Oesophageal Cancer

Eulogy

2009-10-24T09:17:00.003+11:00

Note: I have placed Peter's eulogy on his "Pete's Place" site.

Memorial and Preparation

2009-10-17T18:47:00.002+11:00

Please go to "Pete's Place" blog for a run down on the memorial gathering on 15 October 2009. I thought it best to place everything on that blog site, rather than the Oesophageal Cancer site. The program and eulogy will also be published there shortly. Thanks - Leanne

Memorial Service 15 October 2009

2009-10-03T08:46:00.004+10:00

The Memorial Ceremony/Service/gathering is tentatively scheduled as follows:

Time: 2.30 - 4.30pm with afternoon tea provided in the last hour
Date: Thursday 15 October 2009
Venue:
Lakeview Ballroom
Tuggeranong Community Centre
Cowlishaw Street
Tuggeranong ACT
RSVP:
If possible to pgaras@gmail.com or my email address or by text or phone.

The community centre is next to the Library, with pay parking available across the road and adjacent to the centre.

I am just waiting to hear back from the centre about the availability of some equipment that I need and will advise if the venue or details change via this blog. If they do it will only be to move to another venue in Tuggeranong, but I am fairly sure this will not need to change.

If you wish to attend, you would be very welcome. An RSVP would be helpful so I can organise seating and catering, but is not essential for those of you who may not see this until late in the day or who are unsure if you can attend or not until the last moment.

Further updates, information and advice will continue to be posted on this blog or Pete's Place
blog.

Leanne

Peter's Funeral on 22 September 2009

2009-10-01T09:22:00.003+10:00

The funeral at Macquarie Park Cemetery in North Ryde, NSW was held at 12.30pm on an unseasonably hot, windy day for Spring. Peter hated the cold and hated Canberra in the winter with a mortal dread, so it is fitting that it was warm for his last day with us.

The Ohel Chaim chapel, in this huge cemetery, is a simple place and suitable to the dignified and restrained service which Rabbi Jacobson performed. There were no flowers, just the simple black coffin draped in a fringed, velvet cloth to the left of the seating, with the rabbi on the right.

Not everything can be controlled for, however, even at the last, and the sound of a mechanical digger working at some distance was annoying from time to time but I did not think it politic to rise in the middle of the service to close the doors.

The rabbi delivered the Eulogy I had written sincerely and movingly and I was glad he did not ask me to edit it down, because how do you fit a 60 year life into less than 20 minutes? I still know that it could, in no way, really do Peter justice. But I think he would have been pleased, although I have no doubts whatsoever, that he would have read through it and made a number of suggestions.

Some of Peter's friends/colleagues drove the 300 kilometres from Canberra and 3 longtime workmates, with whom Peter was close, came from the various Centrelink office or retirement to pay their respects. Also present, were people whom I had never met who formed part of Peter's early life in Sydney as well as a representative group of my nuclear and extended family. It was not a large group because the timing of the funeral was quite quick, in accordance with Jewish tradition, and most people with whom Peter had had contact over the past 15 years of our time in Canberra could not make the journey.

After the service, we walked the short distance of about 30 metres or so to the burial plot, where there were more prayers and words of comfort. Then 4 shovels were planted in the earth and we were invited to take a shovel, one at a time and place three spades of earth on the coffin. I was first and then others followed, as it is traditional that "we bury our own". Next, the rabbi invited me to step up onto the path near the grave with the other mourners adjacent to me in 2 parallel rows, so that I might "step off into a new life" and be greeted or comforted by the others present. I found these small traditions, which were new to me, to be exceptionally moving and meaningful.

Some of us gathered after the service to have coffee and cake at the cafe, although that is not traditional to do so in Jewish rites. But that evening, the rabbi also held a Minyan prayer meeting at Peter's only distant relatives' home which was attended by a small number of old friends, some of whom could not make the funeral. Peter had mentioned this in some notes he left me and so I was really glad the Rabbi was available for this quiet and moving service.

That night a wind storm blew up and the next morning Sydney was shrouded in a bright orange shroud of dust, the worst such storm for over 70 years according to meteorologists. Visibility was low, ferries on the harbour were cancelled, and the city remained under the influence of the yellowish/orange haze until it all blew out to sea later in the day. Thousands of millions of tonnes of red dust had blown from the red centre around Lake Eyre, over almost the entire eastern seaboard or Australia. I know that it is a long bow to mention this, but I can't help but feeling a degree of "old Testament" significance about the end of a 5,770 year history for Peter and his family, being marked with such a huge natural event!

Some people have asked that I publish the Eulogy and I will be happy to do so later this month on this blog site. I will continue to use the blog site to keep you informed, as I know many people have been used to seeing it, especially those overseas and for whom I don't have contact details.

I am working on the memorial service and venue at the moment and it is tentatively to be held on Thursday October 15th in Canberra, around 2 or 2.30pm, most probably in Tuggeranong, close to our home, with afternoon tea afterwards. Peter would have wanted a "good spread" so I hope those of you who are within driving distance can place this in your diaries. I will also text and email people for whom I have contact information.

I was very moved by the emails and cards that have been sent to me in recent days. Some I read left me weeping with great, fat tears falling onto my lap and wracking sobs that I found took some time to subside. I was also moved by a letter I received from Dr Yip and a phone call I received yesterday from Dr P about Peter. How many specialists do you know who would take the time to do such an immensely personal thing? It is a measure of their unique and special qualities and also, I think, the esteem in which they held Peter.

To all of you who have been in touch with phone calls, emails and cards, I thank you so very much and will get to reply to each of you individually in time. I am devastated, I am shattered, I am bereft. I sit here alone in Peter's study, writing this, surrounded by all the small markers of his life and I have to say, unlike Edith Piaf, I do have regrets and would have done some things differently had I known then what I know now.

I also miss, with an intense and deep physicality, the Peter who I know, is his "earthly shell". Because it was his hands that I held, his feet I massaged, his brow I kissed and his body that I held, protected and fought for in these last days and years. I know the essence of who he was is not there, but the anguish of knowing his body is interred is deep and final.

Please keep looking at this blog and his "Pete's Place" blog or contact me via email either on Peter's or my email address.

Many thanks
Leanne

Funeral Advice

2009-09-20T21:18:00.003+10:00

Peter's funeral will be held at Macquarie Park Cemetery, Corner Delhi and Plassey Roads
North Ryde NSW on Tuesday 22 September 2009 commencing at 12.30pm.

I know that most of you reading this will not be able to attend, but for those of you who can do so, it would be wonderful to see you there. (This is the cemetery in which his parents are also buried.)

No flowers please, however, he would like to have found a cure for his cancer and often said that he thought within 5 years of his demise, there would be a breakthrough. So please feel free to make a donation to Cancer research.

I intend to hold a Memorial Service in Canberra in a few weeks and will advise of date and location in the blog and via email or SMS for those of you whose mobile numbers I have.

Leanne

The Tragedy Ends and Garpet is No More

2009-09-19T12:09:00.004+10:00

At sometime before 2.50am today, Saturday 19 September 2009, Peter died in his sleep at the Clare Holland House hospice.

He had a reasonable week, after a brilliant weekend (which I know he really tried hard to make good for me) with a few ups and downs, including needing to have his Peg feeding tube replaced on Thursday which required a trip in the ambulance to the Angiography suite at Calvary John James Hospital. He was stressed about the Peg tube simply falling out but having it replaced is something we have done before and I was able to provide the registrar at the hospice with their phone number and details so we had an emergency appointment and got it done without too much ado within a few hours.

Over the past couple of days I had noticed Peter looked a little more tired around the eyes and also had a bit more congestion than previously but I thought that if we could get his evening sleep to be more settled he would be in a better position to respond to the events during the day. To that end we were trialling Temazapam as a little helper for sleep.

However, we had an excellent game of Scrabble on Wednesday when he thrashed me by 100 points and he also did a personal best at walking on the spot of 250 steps in one session. We also enjoyed watching parts of Series 2 of "Hamish Macbeth" on DVD.

As a measure that Peter was still keen to keep on keeping on he told the ambulance men that he wanted to be resuscitated if something happened while he was en route to the hospital. On the other hand he was fearful of passing away at night and rang me at 2.40am on Friday morning finding it difficult to breathe. I spoke to one of the night nurses and asked her to provide some saline nebuliser and assistance to calm Peter and help him breathe, so Morphine was given but he passed an unsettled night and early morning.

On Friday he was a bit sleepy in the morning but at 11.30am he had 1 and 1/2 hours of lymphoedema drainage massage with the physiotherapist and me; he read his emails and had an hour long conversation with Dr P about trialling going home for a 48 hour period to see how we would go and Peter was concerned about how we would manage but thought we might trial some things in advance of doing that. I reinforced that I didn't want him to use up his strength doing something which he didn't want to do and if he was happy in the hospice then I would continue to do what was necessary and support him there. He said he felt he was getting a bit worse and Dr P said that the XRay taken last week showed that the right lung had, once again, "white out". Meaning that the lung was congested with infectious muck and that with my care he could have a few more months, but that the path was leading inexorably to a terminal end at some stage.

Peter was worried that he would die in the night over this weekend and that I should be with him during the night, which seems very prescient. On the other hand he had expressed this fear many time over the past 5 or so years and Dr P said he didn't look as if he would die imminently and after 10 or so hours at his side during the day I just had to plead that I needed to go home to my own bed so I could be refreshed the next day.

After that, we started another scrabble game before he had a bit more trouble breathing and needed to sit up and over the edge of the bed, so the scrabble was aborted - the last word he made was "fluid" - very relevant given he had started to retain fluid in the abdomen and legs since last Sunday evening.

We watched a few TV programs and I got him settled into bed with the help of the nursing staff by 7.45pm and kissed him goodnight.

At 10.15pm I got a call from the hospice saying Peter had had a bout of incontinence but they had cleaned him and settled him down again. However, he wanted me to know that they had taken off his TED long socks because they were soiled, so that when I came in tomorrow I would know what had happened. I was a bit perplexed about the incontinence and said that I hadn't taken him to the toilet before I left but perhaps having a full 10mg of Temazepam might had relaxed him so much he wasn't as in control of his bowels as before. However, they weren't concerned and I went to sleep. At a few minutes after 3am, I received a call and thought that it would be Peter calling as he had done the night before but it was the nurses to say they had given him midnight medications and then checked and talked with him at 1.30am but when they checked again at 2.50am he had passed away.

I know that the time around 2.30am to 3.30am was always crucial for Peter and he needed support, assistance to clear his chest and airways from phlegm and medication or some other comforting aid. Clearly this proved to be the case again this morning when it proved to be one time he didn't come through.

Dr P, as usual has been superb. He was contacted by the nurses a few minutes ahead of me and when I arrived around 4.00am he was there. He sat with me for a couple of hours and we talked of Peter. He told me that he had checked for any signs of asphyxia or choking and there were no signs. I asked whether it could have been his sleep apnoea just failing to breathe after a break and he said that was most likely; the death certificate, apparently, states lung failure as a result of complications of pneumonia and cancer, but I have yet to see it.

I spent 6 hours with Peter this morning and had 2 good friends come to be with me while I did so. I didn't want to leave Peter without some other friends being with me for my last visit with him. I held his left hand for hours and kept it warm in mine. I took photos of him (which some people will find weird). However, I want to remember his lovely hands and have the photos, not for display, but for my own private need to remember how he was when I last saw him. Too many false memories can be created after times of stress and I need to remember all of him and what he was like at the end. I think it so crucial to face the full effects of things head on and there is then no room for false memories or fantasies about what might have been.

Forty days and forty nights had elapsed since he was meant to have died following his intensive care stay. He also died on the sabbath and on Jewish New Year - a fitting time for Moshe Avraham ben Leev ha Cohen (Peter's Hebrew names), given that as a Cohen, he was of the priestly tribe. As all of you know, Peter was not religious and did not tell people of his birth religion because he said he wanted people to know him as he was and not as their perceptions or views might inform them of how they thought he should be. A wise view given the sometimes continuing prejudices colour modern society.

Peter will be buried at the Macquarie Park cemetery in North Ryde sometime next week.I will post details as and when I know them.

I salute you Peter! You have been the most vexing person in the known universe at times but also the most inspiring, frank and fearless, bright, intellectually uncompromising, challenging, stimulating, strategic and ethical person I have ever met. I was lucky you found me and we shared wonderful travel times together as well as some really close, deeply meaningful and loving moments over the years and during the course of this illness. "Vale" my loved one! You will never be forgotten while I have a breath left in me. I loved you and loved you and loved you and I know that you returned that love and we were precious to each other.

Leanne

A quick update - Is life a Greek tragedy? Yes

2009-09-13T09:07:00.004+10:00

Peter had a CT scan on Friday, as he wanted to see if there was any improvement in the cancer that was at the base of his throat following the treatment in June and July. Unfortunately the news was bad. While there was nothing to be said about the throat there are bone metastases in the spine at C7, T1 and T11 of the vertebrae with a high risk of spinal compression. I know that those of you with medical backgrounds will know immediately that this is very bad - as it means that as it progresses, every function below that level of the spine will cease to function. At C7 and T1 that means quadriplegia. At T11 that means paraplegia.

Peter and I are, of course, appalled at this possibility. It is and has been his worst nightmare for many years. It is also ironic as the last 3 days he has been so very much better. Getting dressed in clothing for the first time in 8 weeks, doing more exercises, being brighter and cheekier and engaged. His immediate response to the news as brought in by the Registrar was to get up and do more walking exercises. Once we had seen Dr P and talked over it more with him, Peter's immediate response was to get on with our game of Scrabble because thinking about it or talking about it were just too hard. That night, he dreamt he was well and healthy and when he woke he was unsure why I wasn't in bed with him and so he tried to find me. Which meant, unfortunately, trying to get out of bed and past the bed rails. This was not, as is sometimes characterised, "being out of it". He literally had some moments where he didn't realise he was ill and in the hospice. Of course, he came crashing back to reality when nurses tried to restrain him and dosed him with Morphine. So that when I arrived he was concerned he had done the wrong thing but he was only dreaming (having not had morphine beforehand). The tragedy of life is that dreams try to sort through and repair what is troubling us and in Peter's he was well again. The despair he felt when he realised he was, in fact, in his severely compromised health situation was heartbreaking to witness. I wept as he told me.

On a lighter note, he is still very much able to direct certain things. Yesterday was my birthday (one with a 0 at the end) and as usual I arrived at the hospice for a usual day nursing Peter. Some minutes later a cake and candles arrived that Peter had organised through the volunteers to purchase for me. He also had 2 nurses and a volunteer sing Happy Birthday to me. I cried at his thoughtfulness at such a time when he is so incapacitated!

Later 3 sets of other friends surprised me with a visit, edibles, cards, a fantastic bunch of flowers and some lovely gifts. So Peter was wheeled to the sliding door to the outside world so he could be a witness to our outdoor gathering with the first fabulous spring day we have had. I wish I had a magic wand to cure him, so that we could share things more actively again. His mental acuity is still very intact and when he is feeling reasonable, he is a delight to be with and share things with him.

I still hold out some hopes of bringing him home. Eight weeks in hospital and the hospice is taking its toll on both of us. It is not easy to be at other people's beck and call and unfortunately, there is no peace, privacy or free will in institutions, no matter where you are.

Leanne

2009-09-06T08:51:00.003+10:00

This week has seen a few changes for Peter. First he is now on a more "elemental" liquid food to try to help with his tolerance of the food (to stop nausea) and also assist with improving liquid bowel motions (sorry for the detail here...). it has been gong since Friday and there seems to have a slight improvement in the first of these but no change so far with the second.

Also he has had blood in his urine this week and so the Heparin (blood thinner) has been ceased and that has fixed that but the side issue is that he has to exercise more as there is a risk of blood clotting from inactivity. This is not easy as I need to have another person and the nurses are so focused on medication and quick tasks that they are not really easily engaged in helping me with the exercises. So Peter and I have been doing them largely on our own, which is not ideal and this was shown to be so when he nearly fell the other day while using the forearm walker for balance and there was only me to hang onto him.

Peter asked for a blood test this week as he was concerned his electrolytes would be down given his diarrhoea. The results were that they were okay but he is pretty anaemic. So another blood test on Monday to monitor how that's going.

Peter remains anxious when I leave in the evenings and we have been trialling the use of anti-anxiety medication but these have not been successful as they knock him out and leave him with a "hang-over" for several hours afterwards which sees him unable to distinguish dreams from reality. So that remains an issue.

None the less, I am undertaking almost all of the daily care for Peter. I should say I want to do this as then I can check out his condition and keep a monitoring eye on everything as I am the one person, apart from Peter who is consistently around and can advocate on his behalf. This includes showering, exercising, chest physio to assist him to expectorate the phlegm, all other personal care and comfort tasks. I also do most of the drug administration. This saves the nurses time and I am also keen to do it so that Peter gets his full dose of medication. It is also because I seem to be almost the only person who knows how to use his peg tube properly, despite Peter or I providing assistance and advice when we are able to do so.

Apart from these daily issues, we are continuing to enjoy each other's company as well as the DVD's, Scrabble and visitors. We also remain exceptionally grateful for Dr P___ who has continued to keep Peter as his patient despite his role being patients in the other hospitals at the moment. He is great and is very patient and engaged with both Peter and I. Thank goodness he has "kept the faith" with our aims to get Peter home. I am hopeful this might be able to be achieved within the next 4 weeks.

Leanne

More than 40 days and 40 nights

2009-08-31T08:44:00.004+10:00

It is now 6 weeks to the day since I took Peter into the Nat Cap Private Hospital and he was admitted to the Intensive Care unit. It is also 4 weeks and 1 day since the Intensivists said it was all going to be over for Peter within a week and they withdrew the hydration and nutrition.

In that 4 week time period (since 2 August) he has made some good progress and I was thinking about some of the "gains" he has made in that time due, primarily, to food, ongoing medication (Antibiotics in the main) hydration, not to mention support and care of course:
1) Bed sores are healing
2) Sputum now has no sign of Pseudomonas bacteria
3) Peter is able to raise himself from the bed and get onto his feet without assistance
4) He is able to speak more than 1 word without taking a breath (in fact several at a time now)
5) He is now down from 14 litres of oxygen to 8 litres
6) He is sitting up in a deluxe chair with air pillows for around 6 or more hours per day
7) He is able to walk on the spot for 40 steps using a "forearm walker"
8) He looks better
9) He is engaged with me and visitors when he is feeling rested and okay.

On the opposite end of the spectrum he still has issues with the food intake and outflow - we need to get that balance right; he needs to build up strength and his capacity to take a few steps; I am unsure whether he will be able to do without the oxygen altogether anymore; I am unsure whether he would go downhill again if the antibiotics were withdrawn.

But I can say he is still as alert as ever when he has had sleep, is still a very good Scrabble adversary and his repartee has not lost its accuracy or barb. We are enjoying various movies on DVD and BBC series or dramas and he likes visitors when he is up to it.

I am okay but remain feeling tired at times. I enjoy doing things for and with Peter and being with him for the 10 - 12 hours a day but it can be "full-on".

Message for today: Enjoy the small things - the ordinariness of an independent life, breathing without assistance, independence, privacy, dignity, control over your body and the capacity to do all these things without even having to think or ask someone else's permission. Because illness and being cared for can rob you of some, if not all, of these.

Leanne

Not much to report

2009-08-26T07:56:00.003+10:00

Peter had a few really good days (over the weekend) which were a lot to do with getting more sleep. However, the last couple of days he has had less sleep and is feeling more exhausted as a result. He has also developed some nausea which is proving difficult to ease and this, coupled with the need to cough up phlegm "plugs", means he has been draining energy reserves and finding it difficult to recover. I am hopeful that he might have got some more sleep last night but he says he is "scared stiff" at night and as he has only 1 functional hand, he is in difficulty often at night because he needs 3 hands to help him hold a sputum bowl, wipe his mouth and hold his oxygen mask. Unfortunately the night staff are busy and don't offer Peter the kind of support he needs so he has escalating stress at night.

I spent the early hours of Saturday morning with him after he called me at 1.40am. It was a long day - 12 hours through Friday, then 3 hours sleep and then another 11 hours, before going home on Saturday afternoon for a couple of hours sleep and returning for another 3 hours until a volunteer could arrive to be with him overnight.

Meanwhile we continue to work on his feeds with the nutritionist, who is a joy to work with; and today, if Peter is up to it, he has asked the physio if he could take some steps using the "Forearm" walker and 3 people to assist so he can do more than walk on the spot. We have to be careful as his calf muscles have shrunk away and so he needs to be supported and gradually built back up if that is at all possible.

Doctors still think this is a gradual downward path. I remain "pragmatically optimistic" about daily gains and hope I can get Peter home in some weeks.

Leanne

"Plateaued"

2009-08-20T08:52:00.002+10:00

Peter has reached a plateau according to the specialist, Dr P., which I think means the medico's still think he is on the way out. But I have to say I think he is doing well at very small improvements every few days, but I suppose doctors are more objective and less close on a day by day basis. However, the infection in the Peg tube seems to have cleared up according to the latest swabs, the skin has healed around the Peg site and so that is one less issue with which we have to deal. And to me those small things just make life that much easier or more difficult depending on which way they are going and also make Peter more or less depressed.

Peter is also breathing more clearly and has less phlegm to bring up and he has been able to stand without assistance from the bed and do a few dozen "walking on the spot" exercises. All huge leaps of positive progress as far as I am concerned. I know this is due to the continuation of fluids, food and most crucially, the antibiotics which are holding everything (infection-wise) in check. I am hoping that they continue to do so, to allow Peter to get on top of the infection.

On the other hand, he is more anxious and distressed when I leave in the evening and has had to have some anti-anxiety medication. Sometimes I get phone calls after I have come home in the evening, which has necessitated me ringing the staff on his behalf, which I am sure is not something they are too thrilled about especially when busy.

We have not been playing too much scrabble lately as peter has been sleeping a fair bit when he has done his exercises. I have started to find his strategies also work for me and I think that Peter doesn't enjoy losing to me on rare occasions (but then I hate losing too).

Physios and Nutritionist continue to be super helpful and very positive about Peter's progress. He is tolerating the liquid food but is still having "clinical diarrhoea" which the nutritionist is now treating with Hi Maize, a starchy fibre supplement which looks like corn flour and apparently is good for easing those symptoms. I hope in a couple of days the diarrhoea will be a thing of the past.

I am getting a bit worn down by the relentlessness of each day by the bedside, but the few hours at home each night are an island of bliss in the sea of stress.

Leanne

Stable and making a little progress

2009-08-14T08:48:00.002+10:00

Peter has seen the dietitian and she has confirmed our understanding that he should be on full strength liquid food and have it gradually introduced with ever increasing amounts if he tolerates it, so that he gets back to a normal amount of calories and protein. So now the watering down of his food and the 30% amount regime has been changed, fibre increased and a review will occur on Monday to see how it's been tolerated. Dr P said he was happy to take advice on that as he wasn't an expert in nutrition and was willing to learn. So that's very positive. Thank goodness for skilled allied health staff.

Peter has been able to stand up from the bed with assistance (often not requiring it but having it there in case he has a moment of weakness). He is also relieved to be able to be wheeled to the toilet a couple of times a day. He has also been assiduous in doing his leg exercises in bed and feel the benefit of them already although his calf muscles are incredibly reduced in size and strength after the 3 weeks in bed. Again, many thanks to the physiotherapists who have been helping us with that.

He is still very tired much of the time, especially after exertion but I can see colour returning to his cheeks and Dr P said yesterday how much better he is looking and that clearly I should keep doing what I have been doing because it is working. I don't know whether Peter will be able to come home, but it remains our aim and perhaps in a week or two he will have gathered more reserves of strength from the full strength food to be able to build up his strength. He is still needing to bring up the sputum which is infecting his lungs and get on top of that if at all possible. I am hoping his system can recover from this terrible illness. Whether it can or not, time will tell.

Will keep you posted as and when I can.

Leanne

Some positives

2009-08-10T08:26:00.003+10:00

On the weekend I asked if Peter could be assisted to stand out of bed to see if it was a possibility. This caused some concern that I was seeking to ask Peter to do things he couldn't do any more. After consultation with the weekend doctor, I was assisted to do so on Saturday after lunch. Peter was unsure whether he could stand or not but he did it with very little assistance even though he has lost a lot of his calf muscles because of being in bed.

As the next step, I asked that if he succeeded with that milestone, he be placed in the commode chair and wheeled to the toilet so he didn't have to be toileted in bed - a very distressing situation for Peter. He managed this well and was relieved to be able to do so. The next thing I asked was that he have a shower if possible (sitting on the commode chair in the shower) . He managed this well and really enjoyed having his first shower in 20 days. Afterwards he looked better and felt better but was advised that perhaps he should only do that every 2nd day.

We were also told that if he wanted to get out of bed and should happen to fall then no one would catch him because nurses are not covered for injuries sustained in this way. This frightened Peter a great deal. So I said that while ever I was there and he wanted to get up I would support him physically and if he should want to get up to the toilet when I wasn't there then he should ask for the lifting machine or a bedpan and as a last resort, the adult incontinence pad.

We were also told that if he wanted more active treatment then he would need to go to a hospital. I am keen for him to be able to stand and walk 4 steps so I can take him home if at all possible. I know this might not be possible, but we would both want to be able to do so if we could.

Yesterday, Sunday, he asked to go to the toilet in the same manner and also asked for another shower and hair-wash, which he accomplished well. An hour or so later he asked if he could get up into a chair and a deluxe chair was provided which has air cells in the seat to support but not add to pressure problems. It was a real pleasure for Peter to have a different outlook through the sliding doors and to be able to be out of the bed. He said he didn't want to be bedridden.

He sat in the chair for 3 hours, played scrabble (and beat me YET AGAIN!) and had a visitor before asking to go back to bed. That was 2 hours longer than anticipated. Also he got up successfully again about an hour later for another toilet stop. As he said "I'm not aware that lying in your own mess is considered a beauty product for the skin!"

I have just received an SMS from Peter now (8.44am) asking when I cam coming in as he is waiting on me to have another shower. So he is still with us and very engaged.

We understand from the weekend doctor that perhaps all we can hope for is a suppression of the pneumonia with antibiotics and that this may still kill Peter and we don't know how long that might be. However, as Peter has expressed very clearly: "While I am alert and compus mentus I want to keep living."

So on that basis I have asked the physiotherapist to come to see him to help with his leg strength and standing stability, as well as what we can do to keep up the drainage of the fluid on his immobile right arm while trying to avoid the pressure area on his elbow getting worse; also to keep up the clearing of his chest - the most important thing of all. Also I hope the nutritionist can visit today so we can adjust his feeds to allow for his condition and the fact he wasn't on enteral feeds for 2 and a half weeks.

So, in Peter's current situation, I am reminded of the famous Monty Python "Plague" skit : "I'm not dead yet......" and what a wonderful thing that is.

Motto for this week: Don't ever give up and don't take everything someone else tells you as read!

In Situ at the Hospice

2009-08-06T08:14:00.002+10:00

Peter is now in Clare Holland House. He has a lovely room and it is large enough for a sofa bed so I can stay if needed. Although I find that the 11 or so hours a day I am there is very full on and it is a good break to drive home and crawl into my own bed.

There are still a few glitches with Peter's care and with the staff understanding what his frustrations and anxieties are. Mostly Peter gets angry when people can't hear him or don't do things he needs when he needs them. This is because he can't help himself, can't get out of bed now, can't get a glass of water to rinse out his parched mouth, can't sometimes reach the call button if it hasn't been put in his reach and can't call for help because his the oxygen dries him out so much he can only whisper until he has a reviving rinse with water. There is also a difference between his anxiety and frustration about these care related items and the overall possible end stage palliative care issues. Yesterday, it was interpreted that he was in respiratory distress so some Valium-type drug was given and he slept for 3 hours. But he woke wondering why he had been asleep and where the 3 hours had gone. He says he doesn't need that kind if intervention unless he asks for it, which he has done in the past in the hospital, and that all he was, was frustrated and angry.

Anyway, my mother is here with me now and she said the moment I walked in the door and he told me about his issues, and I said I would sort them our, Peter visibly relaxed and let go with relief. I certainly spend most of my time with Peter letting the shifts of staff know about how Peter likes to be cared for, what his history is, what he wants, doing chest physio and arm work to reduce the swelling in his immobile right arm, doing mouth and nose care, sorting out medications (trying to ensure he gets what he needs from both the ongoing drugs he was used to at home and the newer ones he has had in hospital) as well as his oxygen flows etc. It's more than a full time job and I do end up very tired at the end of the day (around 8 or 8.30pm).

We have seen Dr P a few times. Peter still believes that there is a chance he can recover and he has said so to me and to the evening nurse. Yesterday he continues to try to clear his lungs, do the chest physio, lying on his side to give his pressure sores a rest as well as drain his right lung. He was also allowed to return to his liquid food through the Peg site on the proviso that it didn't cause fluid overload in his lungs etc. I was so relieved at that and we were able to start it again on Tuesday night as I had brought a supply and the pump with me. I am concerned about his kidneys and hope that they can keep going.

I know the hospice staff think that I have unrealistic expectations of the chance of a recovery and that Peter and I are kidding ourselves if we think he will get over this illness. But I cannot sit by and do nothing while he continues to have confidence in me and looks to me for the relief of his situation. While ever he remains as totally switched on as he is and continues to ask me for help I will do everything in my power to assist him. And if there is a slim chance of recovery and we get it, then I will be so relieved and Peter will feel vindicated about never giving up, as he has come back from pneumonia and infections before.

We both know there is always the cancer or the next illness and we will probably be equally unprepared to give up on him at that point, if we have another chance. But when you love someone and can actually assist to help improve their comfort, reduce their anxiety and advocate on their behalf, then, for me, there is absolutely no other path than to continue to do so while ever there is a tiny hope and Peter wants me to do so, which he does.

Thanks for the emails, phone calls, flowers and visits. All very appreciated. Sorry if I haven't responded to you personally, but I feel sure you understand.

Leanne

Moving to Hospice

2009-08-04T07:31:00.002+10:00

Yesterday we were able to see Dr P___ the very excellent palliative care specialist whom Peter has been seeing for over 18 months and who knows him very well. Peter trusts him absolutely and he has shown himself to be, time and again, the very best doctor we have encountered. His knowledge is huge, his capacity to patiently explain things is boundless and his compassion, friendliness and support has been second to none.

Peter's first question was "Can I fight this and recover or is it going to be the end?" Dr P said there was a very slender possibility that Peter could recover from the pneumonia but that the likelihood was that this would be his terminal illness.

I asked whether he could be saved if he showed signs of improvement and DR P said yes, which was a relief to me that the course of action could be changed if there was that miracle.

Peter said: "You said a long time ago that if the time came you could help me by making things painless, panic and anxiety free and you could keep my airways clear so I wouldn't suffocate or choke. Can you do that for me"" Dr P said that if that was what he wanted then it was not only Peter's right to have that care but it would be Dr P's personal honour to assist him to do so. peter said he didn't want to die but if he had to then he wanted to "drift off" as if gently going to sleep.

Dr P said he could do that and more to help Peter and that the best thing was for him to be moved to the hospice where he, Dr P, would also be on duty for the next 2 weeks. Suddenly we both felt marginally better. Me, because the struggle with the Intensivists to keep Peter going and to see him as more than just his illnesses on paper has been taken over by an excellent and caring doctor who will do whatever he can; and Peter because I think he trusts Dr P implicitly. Peter said to me after his first meeting with Dr P early in 2008 "If his is the last face I ever see, I will be happy". At the time I thought: "That's a relief to finally find a doctor who is so good and caring and will be here if we come to that point". I am so glad that Dr P has just come back from leave yesterday and so should be able to be with us throughout this period.

So Peter will be moving to Clare Holland House after 9am today sometime, having medications through the Peg tube again and I hope that he can be kept hydrated enough with that, despite the leakage problems we have been experiencing. I am going to ask Dr P if we can introduce some of Peter's liquid food again, even tiny amounts, as I am physically ill to think that he may end up dehydrated and starved, as I want to grab that slim chance that we can revive him. I know that there is still the cancer to answer to but this may have a tiny chance to be beaten and I want to do every single thing in my power to grab it if it comes within reach.

Will update again as soon as I can.

Leanne

Bad News

2009-08-02T13:53:00.003+10:00

Peter has come towards the end of his journey and I weep while writing this at his hospital chair side. Today the Intensivist said that while he has made some progress that he hasn't improved as much as they had hoped and that he is getting weaker.

We have had a very harrowing discussion - Peter, the Intensivist(a good one who has been on for the last 4 days and has taken a lot of time to talk with us) and I - I can't see why they can't keep actively treating him but the doctor says that she can see he is battling but not winning.

Peter is so tired, he says he just wants to drift away as painlessly and comfortably as possible now. I have found this too difficult to bear as he has come through other fights!! I know how he has shown them before that they were wrong but he seems to have lost his strength now. He said this morning: "I feel like I have come to the end of my rope". He is also getting more anxious and distressed, and so Valium and morphine are being used in small regular doses to help as I think it is all too much for him - he is very scared. Soon they will end his intravenous feeding and revert to fluids only (glucose and water intravenously).

This weekend is our 16th anniversary of being together. Today is our 4-week anniversary of being married.

They say he may only last a few more days, maybe not through to this time next week. I have tried so hard to keep him with me over the past 5 and 1/2 years and nothing I do now seems to be able to convince the doctors, and now Peter, that there is hope still. They are telling me there is none and that Pseudonmonas pneumonia is very life threatening and with his cancer and the chemotherapy the risk factors are even higher.

It is 2.07pm Sunday 2 August and they have just switched off his food intravenously and are now putting up the glucose fluids. He is still on one antibiotic. This is the beginning of the end I think. He is awake but a little groggy. I have been holding his hand. Nothing more to say right now. Don't want him to go. Am frightened for him and he is scared too. This is one of the worst days we have ever had to face.

Leanne

Some Positive Progress

2009-08-01T08:03:00.003+10:00

Yesterday (Friday 31 July) Peter was able to fit in his full exercise plan by getting the nurses to start him early (6am) and then have the physio take over during the day and the last one of the day with me and 1 nurse. This involves getting the electric recliner chair to stand him up and then he walks on the spot for 25 steps and takes 3 deep breaths, with a rest in between each of these things. After each of the 6 occasions on which he did this he was totally exhausted and breathless, but did recover quite well especially earlier in the day. The last time was at 5 pm and he took longer to recover but still did well. He slept at intervals after the exercises until the next set of observations or his next exercise.

The new Intensivist he has (until Monday morning when they rotate again) is also a lung doctor and she was pleased with his progress yesterday. He moved from the "non re-breather mask" to the "Hudson mask" without much difficulty yesterday although he was reluctant to give it up the day before. He was largely able to maintain good oxygen saturation levels on the Hudson mask.

I also took in my laptop and organised a mobile broadband USB key so he was briefly able to see what I had written on the blogs and also check out a few emails, which kept him interested for a while.

If all goes well over this weekend (fingers and toes crossed) then they may see if they can change his Peg tube early next week as it is still leaking a lot of bright yellow intestinal juices which are causing pain because they excoriate the skin and make it raw.

Peter has also been moved into a room rather than being in the open ICU area, which is a bit more comfortable for me and he gets to see outside, but he is not in view of the nurses station and that has been worrying him in case he is in need but they don't respond quickly enough. He has also been sitting up and sleeping in the electric recliner chair as that is better for his lung expansion. Although, as you can imagine, only getting out of the chair 6 times a day for a few minutes, means he is having some painful pressure areas on his bottom.

He has had a few welcome visitors from work colleagues, which he has really appreciated, although the visits have to be necessarily very brief to either fit in with his regime or because he is so tired after each one. The nurses have said 5 - 10 minutes only per visit and 2 people per time. But Peter has been very interested in what everyone is doing now. His observation that not a lot seemed to have changed in the 3 years since he had left is probably true of many large organisations.

So the challenge continues over this next 2 days - more exercises with the hope that they shift the phlegm in his lungs and the doctors will continue to treat him as he wishes, which is that they don't give up on him.

Leanne

Four Crucial Days

2009-07-30T08:51:00.004+10:00

Doctors told Peter and I last night that he has 4 days to show significant improvement before they cease to actively fight the pneumonia!

This is another major blow! Apparently he has been showing some improvement but not fast enough and so he now has to get up and try to walk around, get rid of the fluid/phlegm on his lungs and stay off the Cpapp mask (which helps him breathe both in and out breaths) as much as possible. Yesterday Peter did stay off the mask 11 and 1/2 hours which is his longest since coming into hospital last week. So that's a positive step. He has to try to stand and expand his lungs to remove the phlegm on at least 6 occasions today. I know he is determined but also exhausted and gets distressed when pushed too far. But this is the challenge and he has to do it well or die. So I will be trying to encourage him as much as possible over the next few days. I will also be asking what the usual dose of antibiotics is and encouraging the doctors not to abandon him if he is almost there but not quite. Most of the intensivists have pulled out now but one is keeping the faith and is encouraging.

Nothing more to say right now. All is very grim and neither of us can bear the alternative to failure.

Leanne

A Very Distressing Evening

2009-07-28T09:33:00.003+10:00

Peter has had a very trying few days, especially yesterday afternoon. He had a central line changed in his neck to try to stem any possible infection but the arterial line in his arm was not able to be changed and could cause problems if it isn't changes as well as if it is changed. A catch 22 situation.

I have taught Peter how to send SMS texts and he sent several late last night, wanting people to know he was "trapped finally into silence as doctors one by one first project hope and then snatch it away with a new and different crisis". He feels he is the "man in a plastic mask" as the oxygen machine he is on doesn't allow him to talk and he can only communicate by way of a small white board.

He was able to get out into a chair yesterday with the assistance of a lifting machine and several nurses and wardsmen, which was good. He is also having some success with getting off the mask onto a less invasive mask from time to time and he has been maintaining a reasonably good oxygen saturation during those times.

He has been told that he may not leave hospital alive this time and that some of the doctors think he should be made comfortable and not treated too actively. The last straw came last night when we were told that his arm could (if things went wrong with the arterial line in his hand) go black and be amputated. SHOCK, HORROR to say the least; not only that but that we should both come to terms with the fact he is going to die in the near future and that it is clear we haven't been able to do so. I have to say that went down like a lead balloon between us both!! I told the doctor that the theory of "acceptance" of death and the reality when faced with it are two very different things. My theory is that there are many factors which affect one's view on death and unless you have a strong religious faith or have had enough, then the only people who aren't frightened of death are those that don't know it's about to happen. Anyway, all in all we did not a happy time yesterday.

Peter is keen to see friends as he is fearful he may not live long. However, my only proviso is don't come if you or anyone you come into contact is sick - as he is on every conceivable antibiotic now and can't cope with more infection.

Leanne

X-Rays Show Some Improvement

2009-07-26T09:39:00.004+10:00

Yesterday Peter's daily chest X-Ray showed an improvement.

This is as a result of the sputum culture showing that the bacteria responsible for Peter's Pneumonia is "Pseudomonas" and the doctors are now giving Peter the specific antibiotics for that bacteria and reducing the broad spectrum ones. That has been happening since Thursday night and the doctors said that the antibiotics would take between 48 and 72 hours to start to show whether there was any improvement.

The Intensivist said to us that if Peter was in poor physical condition or was not a fighter then they would make him comfortable and let the Pneumonia take him. But as we have been able to keep him in good nutritional condition through the Peg tube feeds and he is so determined to try to beat this, they will fight this as aggressively as they can with everything at their disposal. I am so pleased that he has some physical reserves to help him otherwise it would be a very different story I would be writing right now.

So we are starting to be quietly pleased about that small improvement. Although, we both understand that in the overall scheme of things Peter is not going to be cured from the cancer, we are hopeful that he can get over the Pneumonia, come home and maybe resume the chemotherapy so he can gain as much time as is possible.

I am continuing to spend 9 or 10 hours a day with Peter and that is useful for him as he can't talk with the Bipapp mask on and while he has a little whiteboard for messages it's neither easy or quick to communicate his history or his needs with that, which is something I can do.

Will keep you posted as and when I can.

Leanne

Pneumonia

2009-07-23T12:23:00.003+10:00

A quick blog update to let everyone know that Peter's condition worsened on Sunday and on Monday I was advised to take him to the chemotherapy unit for assessment. This quickly turned into a hospital admission at the Nat. Cap. Private Hospital. By Monday evening he was transferred from the ordinary ward to the "critical care" unit (Also known as "intensive care").

That night the Intensive Care Specialist advised things were touch and go and that anyone who Peter would want to see should come in as soon as possible and asked how we wanted Peter to be treated should he have system failure, given his underlying cancer. So that was a huge shock.

Massive antibiotics have been administered and continue to be. Food through an IV drip and a 3 way venous line has been put into his neck. He is on a "Bipapp" mask for assistance with breathing so his oxygen saturation levels increase from the around 77% to 95% and above. The plan is to see how the antibiotics work and see if he can tolerate being weaned off the assistance a few times a day.

The doctors are not saying anything except to ask what's happening and then provide orders until their next visit. The hospital care is excellent and the Intensivists are visiting at least 4 times a day, along with Peter's regular oncologist. He also has one nurse attending him at all times and extras as needed as well as a physio twice or three times a day. I am there mostly from about 9.30am to 7.00pm, although last night I got a call at 12.15am as Peter was panicking and very distressed so I went in from 1.00am to 4.30am and then came back to try to get more sleep - no luck there but hopefully he will be calmer today and I can slip away when the fatigue hits.

Will update when I can but I am sure you understand this is not easy and I can't possibly manage individual phone calls or emails right now.

You should know that Peter remains committed to getting better from this episode and is not giving up.

Leanne

Update for the week.

2009-07-17T15:06:00.005+10:00

Don't you just love it when new things come along to ruin your week?

The PEG tube that is inserted into my duodenum and enables me to have feeds, medicine, water and so on is giving trouble. Somehow - lord only knows how, it seems to be discharging rather nasty looking stuff that is bright yellow in colour, spotted throughout with dark black looking stuff. Wait for it - the description gets worse - it is also somewhat problematic in that it interacts with the skin leaving it raw and very sore.

Well what would you do? We went to see the doctor - the GP of course and when we showed him how the juices just oozed out of the tube's site and within an hour or so had managed to soak through a bandage thing that was gauze on the outside and cotton wool on the inside taped with some very expensive but supposedly resilient tape.

His comment?

'That looks nasty - possibly infected - we have to hit it with some antibiotics.'

So out came the computer and another script was born. Of course there was an additional piece of action - a swab was taken inside the PEG tube and the contents will be sent off for analysis.

Similarly, since I have been hacking up some white bubbly mess and this changed to a light cereal coloured mess that was more sticky and difficult to deal with a small amount into a container was obtained and also left with the doctor to be sent off for analysis. With any luck, by sometime on Monday , we will have an idea about what is going on.

Our good physician suspects that I may need to go back to the hospital and get a new site for the PEG tube and that he can make the necessary referral to get things done.

We also mentioned to the good doctor that I was retaining fluid on the legs and of course he told me to walk and to elevate the feet above my heart. Great advice, but then how and when do I sit and get this blog written.

The very thought that I would have to go on a regimen of diuretics was not one I even wanted to visit.

The new rule is one hour on and one hour off. So if you all have been waiting for the news - sorry about that - with one hand and one hour to do things in stuff will just have to wait. Friday being a nice day enabled us to literally walk around the block. Tired when I got back but am persevering and writing this diatribe for your entertainment and then back to the elevation of feet.

Interestingly, this week's responses to the regime of chemo is different from last weeks and does not seem to have hit me as hard. Maybe that's a good sign. We will see.

Looking forward to hearing from you all through feedback or a phone call if you know me - just to say Hi and well met.

On a completely different subject - while on our walk, we noticed that buds had not only formed on some of the trees but that they were actually in bloom, in July? Marvellous colours - probably a hotter drier winter than we could have expected. Keep your eyes open - for us at least that was surprising.

Tomorrow, I will try and find the time to talk about something pleasant - even if it's a TV show or a video. I can't keep my audience satisfied with discussions about yellow oozing stuff that looks 'nasty' can I?

The Nat Cap Chemo Suite - the team as at 2009.

2009-07-12T19:32:00.006+10:00

These photos were taken of the staff at the National Capital Chemo Suite. A simply fabulous group of nursing staff who help people with the issues that they have with cancer and its treatment. I am sorry to say that while they spend their lives pouring poison into the veins of their customers - or patients, they are extremely helpful, diligent and caring. I may not survive their ministrations, but they do their best for me and I trust them - literally with my life.

Meet them here and get to know them.

Wedding Photos and other chatter.

2009-07-12T15:54:00.009+10:00

Getting to more wedding photos and stories - I have re-opened Pete's Place again to ensure a more appropriate location for information than the Oesophageal Cancer Blog.

Please go there to see more photos and stories about this event

Happy anniversary I was told- at least one week into the "new"relationship. After nearly 16 years it's really difficult to say and feel this as new. Still, that's the way it it is.

First, the giving of the rings. then the surprised couple contemplating their new status.

For all those who wish to see certain wedding photos - please remember that this informant was one of the main participants in the wedding and OTHERS were taking the shots. I have received advice that suggests that many of the people present at the ceremony took photos and will move them to Cd's and will then send them to me via Australia post or actually carry them to me along with Pyrex food containers that they took with them on the day - filled with delicious Moroccan Veal, Posh Fish Pie, home made Spring Rolls, or whatever happened to be available to take away as - well you guessed it, take away or take out as some folks call it in other countries.

Yes, for those not privileged to be in the know, L and I tied the knot officially. The celebrant was wonderful, the whole shebang took place at our home and was always close to a living walking disaster as the time for the event got closer and closer and the ability of the parties - L and I to get ready in time for things also got closer and closer.

I want to thank my personal "valet" Stephen for being absolutely fantastic and available and all those who came to make the event the great turnout that it became.

It was the work of all those who not only came to witness or eat that made the day not only possible, but pure joy.

More about this subject over time.

Yesterday - and the day before

2009-07-06T16:13:00.005+10:00

The day before Sunday was a hoot. I was soundly trounced at Scrabble. The scores were great, the game was enormous fun, the concentration required was enormous, a younger dictionary would perhaps have helped.

Two friends came, especially to take my mind off things. I suspect it was with some reluctance as one (so I have been told) is in the situation where he is beaten at the game most, if not all of the time by the other. I have been curious about this state of affairs for a long time. The day before yesterday insight, understanding and clarity finally filled my being. My partner also complains about losing to me at this board game most of the time as well.

When you play most board games and Scrabble is no exception, the game rules require that the play is in a clockwise direction. This means that the person on your left hand side is left with either the opportunities or the blockages you have left for them. Some how, being a total noodle brain, I invited my guests to sit where they wanted and lo and behold, one sat on my left the other on my right. The one who complains of losing was - yep you guessed it, on my left.

I am not sure how he views the game, but he is great with words. He is less interested in positioning things and so less interested in leaving openings or even more usefully sometimes closing openings, so that the person following him in the game is actually prevented from using their letters in a high scoring way.

We have agreed to have at least two more games - one where he sits on my left, then another where the two highest scorer from that game sit and have a game together. If I can convince my partner to get into the act at this point then she can play with the person who lost the first game - so there are two single matches going on. If I am particularly fortunate there could be a fourth game where all four of us are engaged in a game together. Something that for who knows what reason we have not been able to arrange before.

The battle was so intense that I developed a high temperature and had to leave the field of battle, a loser and apparently wounded to boot. Let me add with a humongous grin, that this all took just an hour or so.

Elsewhere at home, there were other battles going on to prepare for yesterday - to those who participated in those battles - thank you - as you will read next your work was and is appreciated and certainly not in vain.

Yesterday was very very different. It was fabulous and for those who could enjoy the victuals tasty to boot.

It was filled with people. Two had come to stay with us the day before, some flew in from far away and some drove long distances over many hours. You all know who you are so thank you for being here. It was wonderful. It was a celebration of life. In my situation, what more can you want?

I saw our friends and relatives having a wonderful time and enjoying the food and drink that had been prepared - I hasten to acknowledge the days before yesterday with the assistance of many of those who now enjoying the results of their labours.

It was also tiring and stressful of course for those who had worked to make it happen but fabulous none the less.

Thanks to all who could come. For those who were unable to come because they were ill or had someone in their party who was ill - thank you for considering my state of health and making the sacrifice of staying away. You were greatly missed. I hope you are better or getting better and that we can catch up when my ability to receive visitors in between cycles of chemo and your health coincide.

More tomorrow, I hope.

Good and Bad News

2009-07-03T18:08:00.002+10:00

The temperature has come down with the use of antibiotics and Panadol. However, this still means something is not quite right somewhere. the Chemo Unit where I get my treatments has rung back to say that the bloods that were taken today were not substantially different from those that were taken before the last round of treatment.

I guess this is good news.

I just hope that the antibiotics knock the whatever it is on the head and I can face the nest round of chemo treatment nest week.

By the way, when the blood nurse came to take blood it took a fair while to find the entry to a vein. It was a great surprise to me that my suggestion about a vein was taken on board and the required blood just poured into the containers.

That's all for today folks.

A Scare - or What a Day

2009-07-03T11:21:00.009+10:00

If you have been following this blog you will realise that as a result of operation etc in the past my right hand no longer functions. What this means literally, is that I have to do everything with my left hand.

This not only means signing documents, writing notes, using the computer, washing myself and really more personal hygiene things, I blush to mention them, however most people will realise what that means.

With Swine Flu racing around the world - do you blame me for being alert, but not alarmed?

No offence to anyone, but going out with an illness arising from unacceptable use of my left hand is and was was not on my agenda.

Anyway - if you have to use your right hand whenever I have to use my left hand you know what I mean.

Alarmingly, I can no longer type the codes necessary to create accented letters, because for them you have to press the left hand ALT key - while using your right hand to press the numeric keypad at the far right of a keyboard. Damn it!

This is no longer a scare it's just not capable of remedy unless I become an octopus.

Then again, what I have discovered is that all of the time I have been spending in bed, or my lounge while I am really sick with the Taxotere, or or something else. This means that the fingers and thumb of my hand, so long just used for typing has remained without any manly callouses. The net result being that even with the gentle use of skin repair cream, it is breaking up. In other words I am having to wear gloves to try and protect them against the effects of normal use.

For those of you who are still mourning the passing of Michael Jackson, this is NOT an attempt to either emulate or mimic his wearing of gloves, it really is an attempt to save the skin on my left hand and to ensure that the effects of all this typing does not break the skin and so does not expose me to infections that take me off into the wild blue yonder before the cancer does.

Yesterday, for example, I asked to have some band-aids placed over the offending digits. Good idea, wrong instrument. The sharp edges protruding from the front of one digit was particularly sharp, and could actually penetrate certain types of paper. This is not a useful thing to happen. hence the gloves today.

The things I do to bring you the news.

My temperature went up all of a sudden today actually crossing into the 38 degree level - it is most likely that the amount of phlegm that I have had to eject, or the delayed reaction to the chemo drugs, or something else is getting the better of my system. The Oncologist and the lovely people at the chemo unit I attend are going to call me back when the results of my blood work up arrives on the hospital system, so that I can know about the state of my white cells. Thankfully, blood was taken from me today, so the results would be available to the Chemo team later today the very same people who will commence my next round of Chemo next Tuesday

This scare is still on - but I may be able to report further news a little later on.

Meanwhile - there is a major event happening here on Sunday. A really big day. Looking forward to this is all I can say.

More as it happens readers - more as it happens.

The New Week

2009-07-01T09:28:00.015+10:00

There is no chemo therapy, this week. That means that mentally at least, if not physically, I can actually see, hear and do things that become less possible under the influence of the medication with which I am being treated.

The doctors did say that the effects of the regime of this treatment with Taxotere was going to be cumulative. I have no idea what anyone else thinks that this means - but for me - it seems to mean that if something has been ingested then the toxic effects of the stuff remain. So, the potential and in my case real side effects will increase and remain.

I have already warned my contacts and certainly readers that soon I expect to be called 'baldylocks' - or something similar.

I am at present fiddling with my computer to try and get things done that in my medicated condition seem impossible.

To my horror I am discovering what an absence from sitting in front of this machine means. It means being confronted with more than one screen full of new fangled ways of getting to, converting, viewing, doing - stuff.

In the past when I was gainfully employed working with computers on a daily basis, I really thought that anyone who could not get the hang of various programs by different companies was a boob. Boy was I wrong.

'Use it or lose it' - this should be the warning that accompanies any program and work place these days. At present I am not sure how one adjusts to the new offerings from open source software, the free software from Microsoft and of course all the connections that they have with other programs like those dealing with photos, blogs, news, groups where one can comment, where people join in to become part and parcel of the web. I no longer have any idea how to add my meagre contributions to the vast mass of stuff that is 'up there' on the web.

Anyway, one step at a time I am exploring what is available and note with interest that IBM actually states:

Lotus Notes 8 software integrates IBM Lotus Symphony software, office productivity tools that support the Open Document Format (ODF) standard. Open standards means you don't need to worry about end of life uncertainties or expensive, ongoing software licensing and royalty fees. Lotus Symphony software includes word-processing, spreadsheet, and presentation capabilities. Users can create, manage, and edit documents in ODF, as well as import and export Microsoft® Office documents.

How nice to find that to survive in today's marketplace they have gone for the integrated approach.

Why am I still interested after all this time? I guess it 's because I spent so much time over the years with their products - and often with products that they purchased and improved soon after I purchased or won a product and finally learned how to make it sing and dance.

These days I can barely survive trying to understand just a few products that are out there.

Change seems to happen so quickly that I am not likely to keep up. I guess that all this is a regret that I am no longer young enough or well enough to learn and to participate in what I suspect is the fast paced environment that we envisaged but never thought would actually happen.

The question should not really concern me, but it does. How do people actually find the time and energy to refresh their learning and their knowledge as frequently as they seem to have to while providing a knowledgeable competent service AND managing to do their bit at home with those really important things to do with life and living it, with family etc.

Boy the world has changed and all the while the same number of hours exist within which to get things done.

Back to reality for me. While the medications are not being pumped into me I can find the time to learn and develop even with what else is going on. Next week from Tuesday on when the meds are being applied again I suspect that his period of 'grace' will end.

For those who are interested in symptom watch, let me say that during this period that I am off the medication my mouth seems to have really dried out, my sinuses are either very clear or blocked and my need to get things, literally off my chest seem to increase each day, but more specifically when lying down and losing the upright position.

Now i am off to read that book that has been lying around the place for four days or watching a video. Speaking of which, if anyone has seen the movie called "Collateral" with Jamie Foxx and Tom Cruise DO find it and have a look. It is riveting and will keep you glued to your seats. Do turn up the volume to hear every single word.

So enough of me today - I will try and report on things tomorrow.

The Better News and Views I hope

2009-06-29T14:21:00.012+10:00

Having had those wonderful experiences on Saturday I simply cannot wait to tell you all about yesterday and today.

Yesterday I had a visit from one of the 'followers' of this blog. A 'follower', if I may add, with whom I have had the good fortune to work in the past. Through common concerns about cancer treatment in our lives, as well as personal interactions we have managed to have, what I certainly regard, as a warm friendship.

It was fabulous to see her. I am just sad that there are others, also lovely people who are kind enough to be both caring and kind and do not visit, because they have someone in their family who is possibly ill with something. When someone like me is at risk of infection, because of lowered white blood cell count thanks to the chemo therapy, their vigilance in not visiting, is also appreciated.

Visits like this from family and friends are perhaps the most welcome events that can happen for me and also perhaps for others who become more and more isolated thanks to illness. This may not appear to be the case if and when I or someone in a situation like mine becomes unable to take things in and seemingly do little more than survive from one hour to the next.

Nevertheless it's true and even if there is an impression created that there is nothing 'there' often the perception is open even for a little while and the very presence of the visitor is both soothing and welcome. That is to say this how it is with me - yet I recall almost as a clarion call that each person is different, so perhaps I should be advising that asking the ill person as well as his or her carer may be the means for clarifying what is appreciated and what is not.

Failing visits, I welcome calls on the phone or Skype when I can manage to croak with appreciation. Once again thee are many times when the body will simply not cooperate and actually prevents me from taking calls, speaking clearly and thus of course being understood. I can assure you that for someone who used to value and be valued for his communication skills - this is a development that has been almost as hard to bear as having to do without the use of the arm that was designated by our school system as the arm for writing. The great news now is that finally, after more than 50 years, I can and have started to practice writing with my left hand to ensure that it is clear enough and useful enough to be read and used in meeting the needs of daily life out there in the real world that exists outside my home. As for speaking - that's not good, but with any luck the ears are still working and I can hear what is being said to me and respond - even if it is with monosyllabic grunted 'views'.

Today and over the last few days especially, I have had the joy of people I was privileged to work with as a youth worker well over several decades ago, contact me through email or Skype to express their best wishes and their appreciation of our time together - so long ago in Sydney.

Being even remembered - much less appreciated is wonderful and simply brings tears to the eyes. For those of you who have sent best wishes and notes of appreciation - thank you. I hope yo read this blog to know how much I appreciate your notes and best wishes.

I am afraid that all or at least most if not all of the families to which I belong are scattered across the face of the planet.

So it's only in my fantasies that I can meet with them, talk with them, hug them when needed. I guess that Skype and Google talk help when available to them simply because I can see as well as hear them. It's about the closest I can get to being with them.

My most immediate family lives in New York and its environs, then there is one in South Carolina, another in Vermont. There is one in Washington state, then we have to head towards Canada if we are going north or California if we are heading south. Yep, you guessed it - very extended family relatives I grant you - but relatives none the less.

I do not miss out on Chicago Ill. and a number of other places as well.

From here I have to take the plunge and swim back to Europe and especially Hungary - from whence I came into the world and look for the descendants of as number of families all part of the large eventually extended family that remains there. Another time I can perhaps consider how I can tell you about their situation and views in the current financial recession that is reported on elsewhere.

That conversation is not appropriate for this blog.

Anyway, suffice it to say dear readers that when I could travel I did so to meet those relation about whom I was aware. Alas those trips were at a time when the data base about who could be called relations did not exist to the stage that it does today. Thus there are many, and I mean many people around the world, whose connection with me and indeed sometimes with each other has only taken place because they and I were interested in pursuing the exhilarating hunt for ancestors and family. I really wish I could meet and spend time with them. I certainly hope that they will use the genealogical material I have compiled in addition to the material that some of them have gathered and published on their own.

If they happen to contact me, when the effect of the drugs is absent from my body, when the legs work, when the brain works, when I can feel normal and really more alive than just a patient in chemo therapy I am and continue to be delighted by the contact. I am afraid that I may not be able to manage my side of it because of my condition. Today, alone I have tried to manage at least five or more connections with Skype.Some were more successful than others. All of them were wonderful.

In addition, other private, but happy events took place today and I can only report to you how pleasing it has been to be there, fully awake and fully cognisant of what's going on.

As for my health situation. In the last few days I have felt that my system has been drying up inside leaving behind only some stuff that continually expects to be expelled orally. Not really a nice feeling. It is likely that there is another infection spreading in my lungs or something - then again perhaps not. I have just finished one round of treatment - just in case it may be that another one is warranted.

In the last few days we discovered that the so called 'peg tube' that I have been using as my 'feeding station' for the last year or more had a problem. Though it was replaced in a brief procedure a few months ago, the tap we had asked to be inserted had cracked and was leaking. For those with peg tubes I hope that this comes as an appropriate and informative piece of knowledge. The good news is it can and indeed was replaced at the same place where we managed to get the peg tube in the first place.

I am not sure how many others are as restricted by such things as peg tubes - but it is good to know that assistance is available when needed.

To be honest I have so much more to scribble but time is short and I really need to rest.

I will see what I can do tomorrow - with any luck it will be as great as today has been.

A good day Friday - today is going to be even better

2009-06-27T10:26:00.009+10:00

Saturday, today, is going to be another good day.

I am feeling fabulous, and looking forward to getting up and about, walking, building back some leg muscle and finally spending some time with Leanne in a role that is not confined to a bed, an arm chair, a wheelchair etc.

It is amazing to me how a day without nausea can produce a feeling of well being, almost euphoria.

Yesterday, Leanne and I spent not just minutes, but hours undertaking real life activities like going into the market places near us to update bank related issues, take care of health related issues for Leanne, that inveterate favourite - medical bill related issues, clothing issues and in general getting out and about.

Such matters would not normally be within any view of a day that would be shared with others on a blog, they would merely be things you did because they were there to be done. These days, because of my situation, they are triumphs of achievement - at least for me.

My legs held up, my system actually coped with the workload and so on.

When we got home, I have to admit I collapsed into the arm chair in our lounge room and put my feet high on some cushions to try and get the swelling out of them. It took hours of course, but eventually they were being back to the sleek things they were meant to be.

I am certain that we, like the rest of the planet, were overwhelmed with the brouhaha that was made by the media concerning the death of Michael Jackson. I have to say I really enjoy and have enjoyed his music for many years and I did not expect that he would pass before I did. That said, what took place everywhere in the English speaking media world did seem to be an overkill response - was it a slow news day?

Meanwhile in Australia, we have seen a bloody fight between our Prime Minister, Treasurer and the leading lights of the opposition parties. This also is a brouhaha but one with some real impact on our lives here. The allegations, counter allegations, investigations, actions by the AFP or Australian Federal Police are all fascinating grist to the mill.

So what did Leanne and I do with all this?

What would a normal relatively well adjusted couple do, we turned to the video of course and having found the sense to borrow numerous videos from our local library, we selected the most appropriate one from among our borrowings - "Molliere".

Since this was about the playwright, actor, producer and director it served to indicate - at least to me - Leanne can speak for herself - that the bedrock of farce is not necessarily in the mind and skill of the playwright or author, but rather in the thinking and behaviour of the people that they encounter in their lives and then use with all their skills in sorry telling to bring to the attention of others..

The saddest, funniest, most complex and yet simple things that people think, say or do are the foundations of life and its intricacies as we know them.

NEW FLASH!

I am going to finally get assistance with showering, dressing and - yes - wait for it - getting up and about at last. It has been very difficult in the last day or two to keep to a schedule for not only the medications and other matters because Leanne's own medical issues have meant that she is physically less able to take care of my needs. We both hope that her pain is temporary and can be assisted with varied exercise and rest. Coming as this does at this particular time when there are some other major events in our household - known but to few others, this is not a great thing to happen.

However it is happening and I guess that the two of us will simply have to get on and cope with things or if necessary get people in to help further.

Perhaps more later today - but right now I would like to explore my physical self and not just sit at this computer desk like the public servant that I used to be. Being retired does have some real meaning and values - not least of these is not having to do the 8;30 - 4:51 (or whatever this has become)

I hope to be able to do more later.

In the interim, all you who know me please note - a phone call is not contagious so how about a call when you have the time and inclination?

Salut

Peter

Peter's View on Cycle 2 of Chemotherapy, the Universe and Everything....

2009-06-22T10:39:00.004+10:00

Hello everyone, Peter has been well enough to type up his thoughts this week, which is quite an effort given he has only one hand that works now. He starts the 2nd week of the 2nd cycle of chemotherapy with more infusions of Taxotere tomorrow. So, enough from me and here are some of the things that have been occupying his mind over the past couple of days:

To all of those who have followed this blog thus far, I think you need to hear from me - the owner and original writer for this blog. The reality folks is that I am not at all well and this cannot be left at the door of the medications that I have been ingesting nor the simple consequences of such medication - loss of hair, lungs that are filled with crap and need to be emptied so that I can breathe and just function at some basic level. Alas my mind is clear and really quite vividly analysing the situation each blasted moment the day or night - whenever I happen to catch myself in an alert state. What does my analysis tell me?

It tells me simply that I am on my way out. There is no wriggle room out of this analysis and of course as Dr. Kubler Ross branded into my brain cells years ago in what was another life, as part of my bereavement process I really need to:

deal with unfinished business
say and give opportunities to others to say their good byes
finalise any outstanding matters - in my case simply as an example deal with the relationship issues that of course have arisen in a small life time with the wonderful and very loving woman in my life;
the details of where I am to be placed when I can really not get up for another round of the pummelling and punishment that this illness eventually takes.

As to the last matter - I have no idea what other people do. Do they simply contact a funeral director and make the necessary arrangements while they are alive or does one wait and allow a loved one to make the arrangements. Should one take into consideration religious differences that have not impacted on the pathway through life, but which may have a different meaning to the people involved when one passes on and the other remains. Does one factor into consideration that Canberra being a sort of half way house for public servants may well mean that one is left in this city while a partner remains for his or her life span but then wishes to be placed elsewhere than in this fair city - perhaps closer to other extended family members back in the location where that person was born and grew up.

All unfinished business that sadly is becoming more and more urgent with the passing of every day and all unfinished business that takes one back in time over an entire life span raising issues that once produced anger, frustration, sadness, even revulsion and violent disagreement with others.

Business of this kind is generally buried along with other garbage at some lower level of the psyche. It seems only now in the most impossible circumstances to raise its ugly head and demand some form of resolution.

I know that in my life there have been many instances in which my behaviour has been inappropriate and as a result has hurt people. For this, all I can do is to say sorry - and I do. I really wish that the situations could have been otherwise. Of course I say this now with a head that I hope is filled with changed outlooks on life, changed measures of how I look at and value others and of course how my learnt behaviours, attitudes, prejudices, abilities all mix together in this melange that calls itself me.

Each day this changes, for better or worse as internal and external stuff impacts on the what's left. I sincerely hope that it is changing for the better and that I am becoming a better person in the way that I think and go about finding those few things I can change. I also seem to recall some of my teachers telling me the wise advice that I should change what I can, accept what I can't change and just try and deal as well as I can with what is out there.

I have no idea if I can do this but I am trying.

In the interim, while I can, I am happy to have visitors - provided that they understand my levels of incapacity and levels of cell helplessness - ie the current levels to which my entire cell structure is compromised - in other words people who are in good health.

Update Monday 15 June 2009

2009-06-15T20:11:00.003+10:00

This week has been the best week Peter has had since he started the chemotherapy - which is unsurprising given that he has had 1 week off before he starts Cycle 2 tomorrow. I could tell he was improving by his ability to speak more than a word or two and his desire to be up and about in the house. A true benchmark was that he spent half an hour each on two successive days at the computer - something he hasn't done for about 6 weeks or more. He was also quite fiesty with visiting community nurses and engaged in quite a bit of banter, which is always a good sign for him.

In the past 2 days, I have abandoned trying to get on top of all the household tasks and have spent slabs of time having a thorough thrashing at Scrabble. Peter is excellent at it and managed to get 105 points out of a very stingy assortment of letters yesterday, while of course I like to concentrate on interesting words, which is not the way to win a game. Some years ago I banned myself from playing with him because I was sick of being beaten ALL the time. But I realise that he needs to have mental stimulation and daytime television or reading is not the way to do it and he needs that kind of interaction. So I have called a truce and he has responded really well. He has also asked whether there might be a volunteer at the Palliative Care service who might like to come to play board games and cards with him during the day. But we have yet to hear if that's a possibility.

I have also "lambasted" him into doing some exercises occasionally for his legs and he walked about 75 metres down the cul-de-sac this week as well which was also a major effort.

Last week we went to see 3 Occupational Therapists who considered the issues for his right elbow, and how to alleviate recurrence of pressure sores. They gave us some good advice and we are waiting to see if there are any special aids that we can use for removing pressure. Given that Peter's right arm and hand is now entirely paralysed, we have to be very careful to avoid any consistent pressure that could result in another pressure sore opening up. Apparently skin and tissue that has been prone to a pressure sore will only ever be about 80% as strong for a year or more after it heals.

Tomorrow, Peter is due to commence the 2nd cycle of chemotherapy and he is also seeing his medical oncologist to see if he is up to undertaking the 2nd cycle. His bloods seem okay according to our GP who visited this evening. Peter didn't wish to be exposed to ill children at the surgery so he kindly did a home visit tonight.

One thing which has seemed to deteriorate is Peter's voice. It is higher and squeakier and he is more "breathy". I'm not sure what's happening there....

Anyway, if chemo goes ahead tomorrow then if things follow the same pattern as cycle 1, we expect that he will have a pretty rough 2 weeks ahead from Wednesday. So we are bracing ourselves for that. Well, that's about it for now. So much to do and so little energy to do it!!

Best wishes to everyone. Leanne

Endof 1st Cycle of Chemotherapy - Monday 8 June 2009

2009-06-08T18:40:00.003+10:00

Apologies for the delay in writing the blog until today.

Peter had his second infusion of Taxotere on Tuesday last week. He was so weak and low on that day the nurses asked him whether he really wanted to go ahead with the second infusion and he said "What choice do I have?" to which the nurse replied "Well, sometimes it's about quality of life rather than quantity" and Peter's reply was "Just stick the needle into my arm!". A sentiment that I applauded, knowing Peter is so keen to continue to live and I am keen to continue to support him; the quantity versus quality issue seems clear-cut from a distance but when the option is to face death sooner it seems glib and irrelevant at that moment.

So the rest of the week Peter spent the majority of time in bed but seemed a little less nauseated that the week before, if that's possible. He's been keen to get up and spend time in his recliner chair in the family room while I buzz about doing all the things that need to be done. I noticed, however, that his leg muscles are getting smaller and he found it difficult to get out of his chair this evening without assistance. Apart from that, so far there has been no body rash but there is a battle with oral thrush (another side effect) which is not helped when Peter occasionally feels the need to refresh his mouth with lemonade or apple juice - as the sugars help the thrush to grow.

Meanwhile, luckily I've been able to continue his liquid food and that is keeping him in reasonable condition otherwise. Today I can see an improvement and he is watching television now. He doesn't have to start again until next Tuesday so I anticipate he will feel better each day during this coming week. He has said today he is missing human interaction again which I know means he is a little better as last week he could only point and moan for things he needed.

I have been keeping to the house for the majority of the time as Peter has been so sick, only heading out quickly to do key tasks. Also, given that the chemo makes him so prone to infections I have been keeping an informal quarantine and trying not to come into contact with people more generally. Problem is this means Peter is isolated from friends as well. But today is the last day when he is most prone to infections so I hope well friends will be able to visit this week.

Things have been bleak weather-wise with short, coldish (12 degrees C to about 15 degrees C), grey days which don't help Peter feel positive. As he always says" Why do I have to bear all this AND a Canberra winter at the same time!!" Too true Peter... we used to either work harder at work or head to Europe with the onset of a Canberra winter every second year and that was the best use of a Canberra winter I can think of, to tell the truth!

Meanwhile, I am gradually making the junk room back into a real bedroom but that has meant the rumpus room is now the junk room! Next step, is to clear the garage a bit and then move the stuff from the rumpus room to the garage so it has most of the junk! I have set a deadline of the end of this month to try to get that done but my thoughts are more active than my desire to get out into the garage.

Not much on this week apart from taking Peter to meet with 3 occupational Therapists about the pressure area on his right elbow.

Best wishes and special thoughts to our northern hemisphere friends who are on holidays or contemplating one. Our spirits are with you and I only wish Peter was healthy again and we could meet up with you somewhere warm, sunny, picturesque and historic with marvellous food!

Cheers for now - Leanne

End of Week 1 of Chemotherapy: May 31 2009

2009-05-31T13:41:00.003+10:00

This week has been very hard for Peter. The chemo transfusion on Monday was fine - a 2 and 1/2 hour process in the Chemotherapy Clinic of the National Capital Private Hospital where all the staff know Peter from his past courses of treatment. They are exceptionally excellent, efficient and competent nurses who understand Peter, his history, humour and concerns and amazingly have mostly all been there for the past 5 years.

By Tuesday Peter was starting to feel a bit under the weather, but he was able to shower, dress and read in his recliner chair. It was a bit mad as I had the carpets and lounge steam cleaned so the house was in complete uproar (something I had booked before we knew Peter was starting the chemo). By Wednesday, he was very ill with unrelenting nausea and has been in bed since then. I'd say the worst days were Wednesday through to Friday and the nights were bad as well (not much rest for me there). Over the weekend he has been still nauseated but I have been trying to be rigorous in administering the Cyclizine (anti-emetic) every 4 hours to avoid him starting to get unwell and then having to spend an hour or more bringing it back under control.

He couldn't make any of his medical appointments this week as a result and I was, luckily, able to get the community nurse to come out to assess the pressure area on his paralysed right elbow. She says we are doing well with using a memory foam neck pillow to support his arm while he is in bed (courtesy of the OT at the ACT Hospice) to avoid further problems. Also our Homebased Palliative Care nurse came out on Thursday which is always reassuring.

Unfortunately, the longer Peter stays in bed the weaker he is becoming. However, he has been in such a bad state that he really needs to be in bed. He has been pretty monosyllabic for the past few days but today was able to say a few phrases so I think he is pulling out of this round now. The problem is that tomorrow the nurse from ACT Pathology will be coming to take bloods with Peter due to re-commence the 2nd week of this 1st cycle of chemotherapy on Tuesday if his blood count is able to take the next round. However, he said to me today that he feels so sick that he just can't go on. I'm not sure if that means with the treatment or generally. So I will have to wait until tomorrow to broach the subject.

With Peter being so ill, he needs more personal care than before and I am needing to do more to help him with toileting and personal care, which he can't do one-handed and when he is weaker. He is also disturbed a lot throughout the night. During the day I can get him settled and he will be generally get some peaceful rest while I do the household tasks. But at night he seems more disturbed and hence needs me more. So I am now trying to get some rest in the afternoon and we have a quiet time from about 5.30am to around 9.00 or 9.30am when I can often grab a few hours. Any routine I once might have had has now completely gone out the window.

Anyway, I have no idea what next week might bring but thanks for thinking of us with your emails and phone calls. I am not feeling very conversational at the moment, so please accept my apologies in advance if I don't phone. Best wishes to you all - Leanne

News as at Sunday night 24 May 2009

2009-05-24T20:00:00.003+10:00

I am writing on behalf of Peter as he is not feeling too well. Unfortunately, the past 2 weeks have been a bit of a trial. Peter became very nauseated on Monday 11 May and for 4 days we couldn't crack it, that is, none of the usual drugs worked. At the same time he was bringing up a lot of clear, very viscous and bubbly saliva.

The palliative care service sent us out a doctor on Thursday 14 June and she was concerned that Peter was so unwell with the cyclic dry retching that she thought he should be admitted to the hospice but there were no beds. So on consulting with 2 other specialists with whom Peter has been involved, the pall care doctor organised for him to go to the National Capital Private Hospital in Woden with the gastroscopist as the admitting doctor. I took Peter in that afternoon and he stayed for a week. Luckily, his other palliative care doctor, with whom he enjoys a really wonderful and respectful relationship, was able to prescribe 2 drugs which sorted out the nausea and the saliva. One acts to dry up secretions and the other acts on the nausea.

While he was in hospital, the gastroscopy specialist took a look down Peter's oesophagus and the next evening he attempted to dilate it, which was only minimally successful. Unfortunately what he found was that Peter's oesophagus is "caked" in tumour just at the base of the neck and it had closed over so much, I think, that Peter couldn't swallow his own saliva. So the bad news was out! What this means is that no surgery is possible. Our hopes had been that the stricture causing the problem was scar tissue from radiotherapy which could be helped with the insertion of a stent to keep his osophagus open. But this is not possible with the tumour in place.

Surgery is also not possible. So tomorrow, Monday 25 May, Peter will commence another round of chemotherapy. This time he will be using a drug called Taxotere (which is not on the Pharmeceutical Benefits Scheme and so is not low cost) but it is the best hope for some shrinkage of the tumour to allow Peter some extra time with us. The benefit of tumour shrinkage is offset by the nausea, increased susceptibility to infections, body rash, pins and needles in the hands and feet and other side effects. I am hopeful that he can cope with the full 6 cycles of 3 weeks each (18 weeks altogether) as apparently some people can't and don't complete the full period. I know that neither of us is looking forward to the next few weeks but we want to stay together for as long as possible so will take any opportunity which offers some hope of further time together. We will also be trying to avoid people with any infection as we can't afford for even the slightest cold to appear. We have both had our flu shots back in March/April and Peter has also had a pneumonia vaccination which I hope will be helpful in warding off any infections.

Peter has not been using the computer or Skype now for several weeks. So I would suggest if you want to contact you do so by email (if you don't have my email address, write to Peter's and I will log on occasionally to collect them, I just don't want to put my email address into cyberspace) and I will provide his replies to you. Either that or phone calls are okay after 9.30am Australian Eastern Standard time.

I will write in the blog once per week to keep you informed, as best I can. But I know you will understand if, sometimes, it might be too hard to do so.

We send our love, best wishes and thanks to all Peter's friends and relatives. Until next time, as Peter would say "Salut". Leanne

Another AARGH moment or two.

2009-04-21T12:43:00.002+10:00

I am finding myself technologically challenged when I see youngsters playing with their new toys and I guess that is as it should be for an old fogey now out to pasture. I have to say though that I wish I could still compete. Alas for that you need two hands and certainly lower levels of daily pain.

Still, there is the "excitement" of fighting various bureaucracies as they get my papers wrong, ring me in the middle of the day and ask if they can speak with George (my middle name), having angst about item numbers not being on an account sent to Medibank when they are actually there on the bill AFTER the item name etc AAARGH!! You see this is why we social workers were so good on the counters in at least one government Department years ago, we knew first hand the frustrations and had the skills to calm everyone down and get the thing fixed. If only there were real people, like SWs around instead of unending telephone messages inviting you to select from a spoken menu that does not suit your inquiry so you have to wait until all the options are exhausted and THEN finally, maybe, if you are lucky, you get a human at the end of the line you can actually talk to.

Now - finally, I also understand what was ailing all those 60+ folks who used to come and do business where I used to work. They were right to grumble and these days this individual thinks things are actually worse.

I am entitled to say that now that I have reached the magic age at which grumbling is OK.

Have - everyone then write and tell me about it. Even vicarious fun would be welcome at this point- better yet give me a call on Skype or Google Talk or the land line.

Latest News

2009-04-19T13:26:00.003+10:00

Had an ultrasound to see what was happening with the PEG tube and little could be seen by me as they had the very cold but interesting gel spread across the abdomen. I was disappointed not to be able to see the outlines on infant on the screen above my head, thinking of the millions I could have made from a medical miracle. As the headlines: Man has child at the end of his feed tube" disappeared from view, I realised that I really could not see much at all - no doubt the report will be more helpful than that lay person's observation.

I suspect that the tube has been in need of replacement and that the indescribable pain I feel in insides is due to some inflammation as the tube turns and squirms inside my abdomen. We will see.

That's all fort the moment folks, I am going back to my chair for rest and recreation.

Scan results are back

2009-04-16T08:11:00.000+10:00

Scan results are back from CT Scan a few weeks ago. Results are mixed. To the Radiologist the view is that the cancer has returned in two places - one being in the collar bone area where I have been operated before and where they could not get all the bits - this appears to the real danger spot and we are setting up an appointment with a neuro-surgeon to see what if anything can be done there. The other locus is elsewhere and the radiologist suggests that it is simply more of the same old same old while the oncologist disagrees and says that as they are under 1 cm in size they may just be normal tissue.

What does all this mean for my continuing survival?

Buggered if I know.

All I can tell is that I have been asked to get an MRI done and then to see my oncologist after this in six weeks time. So, figuring that he does not want to waste his time and does want to be paid, at WORST I have at least six weeks left - at best, a lot longer.

If anyone wants to know more -I can read you the report and you can prove how smart YOU are by telling me what it means.

Salut

Peter

I'm Back

2009-03-31T08:43:00.003+11:00

At least I am back briefly, to write about what has been happening to me recently, that is in the last month or so. I will try and refrain from being boring, so sit back and enjoy the ride.

As my readers will know, my right hand has been made virtually inactive by some sort of paralysis that appears to have been the result of the removal of a piece of cancerous tissue under the right shoulder which also required the cutting of some major nerves. there are technical names for all of this and I am delighted that my doctors know these names and can pronounce them. It really is to their credit. Suffice it to say that along with a sudden and I have say unexpected paralysis, has now come some quite incredible levels of pain. Since we have discussed these before as well, I will not go back and explore them apart from saying that the doctors and I had hoped to have the pain under control with a regimen of drugs applied in various dosages at various times during the 24 hour period that constitutes a day.

It has not been working as well as expected. Dosages have increased and times for taking the drugs have increased from three times a day to four times a day. In spite of all this, the pain has returned, often with greater ferocity than previously. Just yesterday when I sought an emergency appointment with my main pain doctor it happened to be set at a time that was 30 minutes to the time when my medications were due. On the way to the appointment, I felt strong but endurable levels of pain which built and built in intensity to the point that when the doctor and I were meeting, my breathing was through the mouth, in rapid gasping swallows of air in between pain on three levels, background pain, pain along the nerves still left working in my right hand and occasional shooting pain - pulses of what feel like violent electric jolts of pain whose frequency cannot be anticipated, controlled or managed in any way. Together these pains created a situation in which my doctor called for a nurse to provide me with a "breakthrough" shot of a new type of pain control medication. Suffice it to say that this also took some time to work its way into the system, but eventually left just the background levels of pain in situ. These are now "normal" and what I have managed to get used to.

Anyway, to get past this moment in time, we now have some medication that can be used to provide breakthrough pain control and provided that we use this well I should once again, hopefully, be able to manage the pain that appears to be ever present.

I am not sure how this will affect my ability to be available on line or indeed in person to those of my readers who have been kind enough to follow this saga and visit occasionally. I will not mention some of the other issues we have been having, perhaps it will suffice if I let you know that many of the drugs I have been placed on have certain impact on the bowels, none of them pleasant.

I will try and live up to my obligation to write to this blog as often as I can, but to tell the truth, my heart's not really in it - at least not a daily blast. There is nothing to say. Each day is much like the one before it and so on. However I will try. I will also try and communicate with friends more frequently as I am able, especially if this new drug regime works as well as expected.

So let's hear from you all - if any of you are still reading. I'm back and open for business, in at least a limited sort of way from today on.

Living on the edge

2009-03-07T13:00:00.004+11:00

For some time now I have been wanting to bring to the attention of my readers the nature of my daily regimen, so they can understand the things that take place in my life on a regular basis, things that I regard as an impediment to the daily life that I would like to have and that I suspect most people would like to have.

The daily regimen that is listed below will help all of my readers to understand some of the difficulties that face both Leanne and myself a daily basis. This is why I have called this particular entry "Living on the edge".

I don't think it is possible for many people to realise how difficult it can be for one person to have to wake up out of a lovely nights sleep at 5 AM simply because that person's partner requires assistance with both the preparation and insertion of medication and food into a Peg tube.

It is equally difficult I suspect, for people to understand how difficult it is, to stay up every night until 11 PM and once again both prepare and assist with the delivery of medication and liquid food.

This may not mean full time daily care, it does however mean that a person's life is disrupted and generally unavailable on a full-time basis.

The daily regimen:

5 AM -- medicines inserted into Peg tube
-- food tube detached
-- feed pole and container removed

11 AM
-- medicines inserted into Peg tube

5 PM
--medicines inserted into Peg tube
-- food container attached to feed pole
-- food tube attached to Peg tube

9 PM
--food container detached from feed pole
-- new food container attached to feeding pole

11 PM
-- food tube detached
--medicines inserted into Peg tube
-- food tube reattached

There are of course some different medicines inserted into Peg tube at each of these times, some remain the same. Dosages are generally the same however there is permission provided to alter some of the dosages dependent on the level of pain in my right hand.

Generally the food supply going into the Peg tube ends at just after 5 AM and starts again at 5 PM. This is generally varied only on weekends when some additional food is provided to ensure that the adequate dosage recommended by the nutritionist has been provided.

Suffice it to say that this regimen is enough to eat into a normal "working day" to the point that no working day is really possible.

If the nature of work was such, that it could be done from home with the breaks required by these feeding and medication hiccups, as well as all of the work required to clean and maintain the equipment and of course to assist me, the patient, with daily chores that are required to be done, but which need both hands - everything from tying one's shoe laces to providing assistance with daily ablutions and so on.

We are extremely fortunate to have a workplace that permit carers leave. I have no idea how we would cope were it not for the kindness and understanding of the senior management in the institution in which she works.

Anyway enough of this exploration of the dark side of life.

The bright side of life these days is made up of the opportunities that we have to meet with friends and to enjoy their company in spite of the limitations of the daily regimen. It is these opportunities that I suspect keeps us both sane and able to continue with the daily grind that is imposed by the daily regimen.

News of the day.

2009-02-23T09:12:00.002+11:00

Good morning all, a fine and wonderful Monday to all those of you who are working. A hot steamy Monday for those who are not, unless of course you have air-conditioning or something similar at home.

I woke up this morning after a particularly restful night to find that the temperature was going into the thirties again. It's wonderful to have some form of air-conditioning, however it's not fun if this is not turned on, because you are trying to save the planet, electricity or some similar tomfoolery that makes no sense to me.

It's rather difficult to wake up every morning knowing that your life hangs on a knife's edge.

At present, I seem to be leading a momentary calm, charmed life. Of course I have no problems, besides anaemia for which injections of iron seem to be indicated. Alas we are discovering the hard way that unless the liquid iron is taken immediately after food then all it does is to bring on violent retching and other unpleasant after-effects. So there is one lesson learned folks, have your iron after meals and watch out for constipation (sigh).

Then of course there is the right-hand. This is completely useless at present, an appendage that hangs by my side and provides moments of pain whenever there is movement involved. I'm taking two different drugs to try and control the pain, this works most of the time, but not always.

The Dragon Dictate package is becoming a little bit useless at present as it manages to pick up approximately one in five words that I say, this is possibly because of my pronunciation or my lack of ability to dictate into the microphone. Still it is an amusing attempt at undertaking communications in a most unusual way.

If you are interested, my preferred way of communicating these days is to use either Google talk or Skype. The two means of communication enable me to talk to people and see them at the same time. If this was being done at work using the normal work equipment it would cost a small fortune, however, using the free mechanisms available on the Internet today it becomes a lot easier and a lot cheaper (it's free) than ever before. So if you're interested and you have the time and equipment available, give me a call on one of the two mechanisms or on the phone I would infinitely prefer that to having to type out these sort of missives on a daily basis.

Is there any chance that some of you would like to try doing this with me? Let me know by a response to this blog, or by contacting me one of the media available.

I would close this morning, feeling chatty and await your first experience of chatting with me.

To have fun with this is going to be a new experience for some and overrated for others, but it's worth a try to ask.

Now it's back to the daily grind of reading a book, seeing a video, watching the news, talking with Leanne or maybe even having a day out shopping, visiting a doctor or nurse for some form of treatment or another.

I'm back more or less

2009-02-18T10:10:00.001+11:00

Went to the doctor yesterday and a look at my blood results seems to indicate that the cancer is in abeyance for the time being. I'm not going to make whoopee but, I am grateful for the result.

A left-handed day or two

2009-01-30T08:01:00.002+11:00

I woke up this morning feeling the regular pains that I am getting used to. They are probably from sleeping on too many pillows on the one hand to maintain an upright position and on the other hand to ease some breathing issues. 5 AM is a good time to get up, at least for me it is, it's the time when I get my first round of medications. The downside of waking up at this time is that my partner has to wake up with me and she's the one to make up and deliver the medications that I require. Around 15 minutes is all it takes, but in those 15 minutes sleep patterns are disturbed and for some people this means a great deal of difficulty going back to sleep.

Not me it seems. Since I was a little child I had been able to get back to sleep regardless of the circumstances quite easily. Illness does not seem to have robbed me of facility. Alas my partner is not similarly well endowed.

A few hours later, I gingerly lift the covers, get out of bed and tiptoe into my study, here I can get on with the job of early morning blog writing. There are days like today when this is simply an onerous task. My voice is not really behaving, so the new Dragon Direct dictation package is not working as well as advertised. This means a considerable amount of annoyance as I try to cope with the lack of functionality that my voice provides for this exceptional program.

Still, life is short and is no sense in complaining about things that I can't do anything about. So I will stop complaining right here and move on to more interesting news about cancer and its consequences.

As some of my readers may have become aware, I have lost the use of my right hand this has had some rather interesting side-effects.

I am no longer able to drive. Bleeding obvious you would say and I would agree with you. What you may not have thought about is what happens to a driver's licence in the circumstances. In my case, my driver's license is also proof of identity that I use when I need to. Since I can no longer drive and since this licence has now expired, what can I use instead? Obviously the thought of carrying about a passport is among the possible answers, but not one that I favour. So what else is around?

To get the answers to these questions, I visited an ACT shopfront. When I explained to the young assistant who was there at the counter what my problem was, she was immediately extremely helpful and told me that there was a card available with photograph. I was overjoyed, I mean, an identity card with photograph, what more could I ask for? I sat down at the little cubicle where my photograph was to be taken and waited patiently while the procedures behind the scenes were being taken care of. The camera was set up, I was told to move and squiggle until everything was just right and then snap my photograph was taken.

I was called back to the counter and I was presented with the documentation that needed completion.

Among the items that had to be filled in by me was my signature. I confessed at this point that I was unable to do this because my right hand was no longer functional. This is where the problem started. It became painfully obvious that I could not get a card unless I was able to sign the document from which the signature would be copied onto the card. Of course if I could not sign the document then I could not have the card.

We danced around this little point for some time with me suggesting that the organisation must have come across the problem of people being unable to sign for one reason or another before, in which case what was the parallel process? The young government assistant was unaware of any procedure and called over a supervisor. This is an exceptionally good practice, alas the supervisor did not know either. A call for assistance went out across the office, this was only slightly embarrassing as of course it meant that everybody in the office knew my business, customers and staff alike. Not wishing to have a slight matter like my privacy hold up proceedings I went along with this to no avail. Finally, with an attitude that the customer is always right, I dared to suggest that perhaps a left-handed signature might fit the bill in this case.

Since no one else seemed to be able to come up with a better idea my notion of a left-handed signature was accepted. I then suggested that someone write a note on the documentation concerned that evidenced that while the signature was different from my previous signature this was because I had lost the use of my right hand and had to use my left hand on this occasion. The staff were horrified, there was no precedent for such a thing being done and there was no space on the paper for this purpose.

As I was becoming a circus by this stage, I decided to leave well enough alone and took my new identity card with my photograph and left-handed signature and was about to leave when noted what the card was called. It was called a "Proof of Age Card" and I was informed with a smile that this was actually known as a "pub card" by it's usual holders as it provided young people with the ability to prove that they were of the age when they could go into a pub and order an alcoholic beverage.

Naturally I was delighted with this information and just looked at my nearly 60-year-old face on the photograph and had some thoughts that I decided not to blurt out into public speech in a public place.

Several days later, when I had actually enjoyed my 60th birthday I happened to be in the library in Woden next door to the ACT Shopfront. It occurred to me that I had never acquired a library card in the ACT.

I went up to the counter and asked what I would need to do to obtain a library card. I was told I needed some proof of identity and after that I would simply have a form filled in for me and get my card. Beautiful, I thought, I handed over my recently acquired identity document and I was told that it was inadequate, naturally I asked why. I was told that it did not have my address on it. I then produced my now no longer valid drivers license and the address was taken from this document and I was given a library card. This requires the name and a signature on the card. I did my best with my left hand and it was noted that there was a difference between the signature on the card and my driver's license. I explained about my illness I explained about my operations I explained about the loss of use of my right hand and showed the librarian my proof of age card. She smiled at this strange and somewhat embarrassed creature standing at the counter. I grasped my library card and hoping that I still had some dignity I started to leave. Halfway to the door I remembered another request and reluctantly turned back to the staff who I suspect were still trying to stifle their laughter at my situation. I asked where I could obtain a Seniors Card as I had now reached the august age of 60. " Right here," was the response, so once again we went through the song and dance about my name, my address, and my age, but this time there was no longer a problem about my signature, because we had just been through all that.

I wonder if there is anyone else out there who has the problem of being unable to sign documents because they have lost the use of their right-hand and where they are having to rely upon a right handed signature as the only proof of identity that they have got until they can get new identity documentation. If there are, I would like to hear from you to find out how you resolved your issues and what if anything the government has done for people like us. If the answer is nothing, as I suspect it will be, then I wonder if the Health Care Consumers Association is the right organisation to consult with as a means of getting some action taken by government to help those in similar circumstances.

I appreciated the assistance that I was given, I have no complaint to make about the service that was provided to me, indeed in hind sight, I too would probably have been amused by someone in my circumstances seeking assistance. It really is a bit daft that there is no identity card available which has a person's photograph name and address and date of birth on it so that this can be used in the thousands of different situations when proof of identity is required.

Over to you Health Care Consumers Association, what can you do for me and no doubt the thousands of others like me?

2009-01-28T09:14:00.033+11:00

It's been a while since I've written this blog and this is because I have been writing to Pete's Pages. However there comes a time for updating everything and this is the time for updating this blog.

Over the last month or so I've been experiencing nausea more regularly than not and as a result I have been left virtually incapacitated in bed filled up with anti-nausea drugs which seem to have very little effect on some occasions. On the other hand on the days when I do not have nausea, the day is filled with joy. I seem to have the energy to do virtually anything, provided of course that it is within my physical boundaries.

I've been spending a lot of time with Leanne watching videos and reading books. Thanks to my recent birthday I have received gifts of videos and books which enable us to fill up our time in a constructive fashion. Alas there is no predictability to the sessions of nausea and so I treat each day as it comes and dread each night as it comes. Nights seem to be worse than the days. I'm not sure why this is, perhaps it's a fear of the dark and of the dreams that come and revolve within it.

I wonder if others find it more difficult to get through their nights than their days? I wonder if others find it difficult to differentiate between the dream state that they are in and reality? Sometimes in the middle of the dark and in the middle of a terrifying dream there is confusion between what is real and what is not.

As the waking state increases over the sleeping state there is an ability to differentiate more usefully between the two states, but at that moment in time when the sleep state prevails, getting to grips with what is real and what is not can be a difficult task.

I don't know what that would be like for most of you, but I do know that it is very difficult for me.

As for the nausea what do you do about it when you have it? I think back to the time when I was on a very large boat coming to Australia from Rotterdam. I was a small child at the time so that it seemed to be big. For the first few days as we sailed down the coast of Europe and then Africa until we reached Cape Town I was a sick little puppy. Somehow, after we left Cape Town I acquired my sea legs, then the rolling of the waves no longer seemed to do any harm. indeed I seem to recall that while most of the other passengers were laid up in their beds as we encountered the rolling swells between the Atlantic and Indian oceans a companion and I were sliding on the carpets like surfboards up and down the dining area that was empty except for the two of us. Leading up to that time though, I seem to recall being on my bunk, face up, holding my insides and feeling the roiling and churning of every scrap of liquid and solid than was in there.

Let me assure you that this is not a pleasant feeling and it is a feeling that you want to lose in a big hurry.

What I am experiencing these days is very similar to that early experience. I keep hoping for Cape Town to arrive so that I can start to feel well everyday rather than the opposite.

The New Cycle

2008-12-22T16:26:00.003+11:00

Just imagine your life being regulated by the following hours, five o'clock in the morning, eleven o'clock in the morning, five o'clock in the afternoon, eleven o'clock at night, then the cycle starts all over again.

On each of these occasions Leanne has to provide me with, different forms of medication and of course, water. Since getting into a situation where it is 'nil by mouth' all of my food and all of my liquids come via the 'peg tube'. This of course applies to both food and liquids into the duodenum. Since this is smaller than the stomach, the provision of both food and liquids has to be done slowly and gently and preferably in a state which is neither too cold nor too hot.

I think that we've started to get this cycle into gear, but of course every so often things go awry. One of us is not feeling at our best, or the bodily functions do not permit easy collaborative activity. Take this morning as an example. I have no idea why, but the provision of liquids and food this morning resulted in my feeling nauseous. So I had to be provided with drugs that would counter the nausea. Alas, these do not work all the time.I sometimes wonder what it would be like closer to the end?

I suspect that I will be drugged out of my brain, and lying listlessly in a state of sleeplessness just staring at the ceiling or with my eyes closed.

If you have ever visited the hospice here in the ACT or indeed anywhere else in world, I suspect you'll find people who have drips in their arms, tubes up their noses and God knows where else. It is sad, but it's true that dying is often an unpleasant experience I'm not sure I want to experience that, but I'm not sure I have a choice. To go to sleep, wake up to go to sleep and ------------

Plagues on Peter 2

2008-12-21T09:45:00.003+11:00

To those of you have read my plaint, thank you for your comments and thank you for your interest. I am currently using version 10 of Dragon Speaking Naturally Preferred. I forked out for the product. Can you all believe that? It's that good.

What's more, I am once again using Pete's Place as my blog of choice as this new software permits me to type quite serious and lengthy notes without too much effort.

What is interesting in this program, apart from the ability to train it to my voice and my accent is the ability to do so using its own toys. For example at present I am using a dictation box that enables me to place all of my comments quickly into a box that is most effective within the program and is most receptive to various changes in accent and volume. Then, using a simple verbal command 'transfer' it does take the text to the program I want it placed in. Generally this is a computer program that is less receptive or tuned into collaborative mode interaction with Dragon Speaking.

There is in addition a thing called 'Dragon Pad', this appears to be a light word processing program into which you can type more serious efforts and then use the command structure within the program to bold, capitalise, italicise, create dot points etc.

All in all this is more than I would normally need however I have found that this is not enough for this program. What it also seems to be able to do is to utilise some of the cheapest merchandise around for example a shareware post-it note package for the production of extremely efficient basic text and of course the word processing, while it does not do a good job in open office it certainly does a good job in Word Pro from Lotus. I wonder if this is because the Nuance people are in bed with Lotus Notes production as well as MS products?

Please note that I'm taking my general blog writing out of the oesophageal cancer space to Pete's Place again now that there is more to say and more to say it with.

I am also using my Skype and Google talk programs to chat with people, face to face if they have time to chat.

And just for good measure - my best wishes to all over the holiday season. May you all be well and then have a healthy and happy new year.

The Plagues on Peter

2008-12-13T07:29:00.004+11:00

I have been inflicted with yet another sign which tells me to shut up. I have been deprived of the use of my right hand and instead been inflicted with pain where there was none.

The loss of a right hand to a typist is monumental and since I have also lost the use of most of my vocal cords as well I need to try out the very best of those programs that convert sound into text to see if my now sibilant offerings will do the trick and enable me to type again. If not, then this is the end of my blogging days as well. I simply cannot afford to lose the use of my other hand to typing when I need it desperately for other purposes like dressing myself.

I would now like to ask all of those who are computer literate to an extent I will never be able to reach, to help me with information.

What is currently the very best of those programs that convert conversation into typed English text. At this point I do not much care whether it is 'tuned' to an American accent or indeed any other accent. With the product from my vocal cords I do not expect to be emulating any given accent any time soon.

Advice would be appreciated so that I can give myself a belated Chrissie present or something. However if you have tried it and it works for you then this is the best recommendation if you have not tried it then please do NOT give me the recommendations of the manufacturer, just tell me it's out there and I will try and find someone who has tried it and found it to work and work well.

I do need help of the kind that the choice magazines will not provide, real personal help from people who know, because they have tried to use a product and who as a result are able to tell me all the truths, good bad and ugly.

Thanks in advance to those who make their views known. Thanks to those who will ring me, send an email or a phone message or a reply to this blog via a comment.

I really need the info folks and fast. My lack of ability to communicate is perhaps even more serious than the cancer. It can kill me, the lack of ability to communicate easily just makes the continuation of existence miserable and THAT I think is probably worse than just dying.

Amazing what I value hey?

I wonder what others value and whether being able to reach out and say G'day and then chat is valued by others as much as it appears to be by me? Whether being able to register your thoughts on a daily basis and just get them out either to no one or to a group of people who find some things of value amidst the dross?

Don't really know, but I do want to find out - especially if you are all not too busy to say the magic "G'day."

Garpet

Good News

2008-11-30T10:39:00.002+11:00

It's not often that we get a Christmas wish provided well before the holiday, but Peter D has managed.

This is what I received in the mail this morning:

Hello all,
I am pleased to advise that after a brief consultation with my medical oncologist [Dr Desmond Yip] last Thursday I was given the all clear and told to report back in May 2009. That now entitles me to use the middle name NED [No Evidence of Disease], which I will do with pleasure!!! Next big milestone will be 05 Feb 2009, the one year anniversary of my surgery. Thank you all for you ongoing support.
--
Email from
Peter NED Davis
Canberra, Australia

What a great message to receive on a bright Sunday morning.

Thanks for making today a great day even better Peter by allowing all of us to rejoice in your battle against the beast.

Alas, not all of us have managed such outstanding success. Still, each day above ground is better than one below it, so nothing to complain about.

All the best to those others who are just heading into the maelstrom of this illness. If you are frightened by what is happening to you and most of us have been there, then sharing is one way to alleviate some of your fears. It may also be a way in which the experiences of those who have and are continuing to go before you can help with information and possibly suggestions you might like to consider. I know that both Peter and I are willing to share our experiences if you wish to ask. So don't be shy, just ask.

The Dim and Distant Past

2008-11-25T13:10:00.002+11:00

Got a call from a long haired young fellow of around 15 or so (at least that was my memory of this chap) asking if I was the person who had been a youth worker back in the 1970's when he was last in touch with me.

You could have blown me over with a feather.

After a brief, but intensive "let's check each other out to ensure that neither of us gets hit with Internet identity scams" using Skype, I came upon a hair challenged individual with a great moustache, that bore a resemblance to the young man I had known all those years ago. I could figure that out because I still have pictures, now digitally renewed of those earlier times.

When I sent him a few of the photos, one of his comments proved how priceless the wisdom of time can be.

Here was this man, this father, being asked by his children why they could not have long hair, now surrounded by pictures of himself with long hair.

There is possibly no cure in the comments that I received from John, but they sure made me feel good to know that someone I had interacted with in the 1970's felt strongly enough about the difference our interaction had made to his life to chase me over the Internet to say as much nearly thirty years later. Wow!

I hope we can chat some more so I can learn about him and his life. It would be sad after all this time and effort if the contact was only a "one off."

Thanks John. You have made a difference in my life too. Give me more opportunities to listen to your stories, the brief bits I heard were fascinating.

The day after the day before

2008-11-19T16:06:00.005+11:00

After a really shocking day, when I was able literally only able to get out of bed for "comfort breaks" I started today in deep fear of what the next day (ie. today) was going to be like.

Apart from an early attack of nausea that was fixed with some medication, it's been fine.

Fortunately, I hope that the change in the medication regime which started last night will continue to have the same sound effects they had from now on.

Suffice it to say that I even managed to get some work done on family genealogy AND believe it or not, even rattle the shrunken brain stem that I think I still have left, after all the medication, with a visit to some sites I used to favour when I worked (and I kid you not) in knowledge management, records management, change management and the like.

People do not seem to have advanced much, because I found the following entry on one site called BRINT which claims to be "the World's No. 1 Resource for Business Technology Management and Knowledge Management:"

Hi,

I am trying to get a view of what innovative ways people are applying tools and techniques in knowledge management.

I know the basics like Document Management Systems, Wikis, Blogs, Discussion Forums, Intranets, but what innovative ways are people collaborating/utilising these tools in knowledge management. Furthermore, what sort of techniques are people applying to both capture and disseminate knowledge (i.e. recorded lectures/discussions, presentations, informal discussion (how to capture these I am not sure) etc. )

If anyone has any ideas, or can provide me with any insight as to how they are implementing KM in their organisation I would be greatly appreciative.

Thanks

As a "Registered Affiliate" I could not resist replying with the following:

Have you thought of using the facilities provided by Google ie. the equivalent of their on line and freely available office suite, their linked application suite called "Pcassa2" - an application that stores pictures on line and more and their Google Talk application which enables you to link to users anywhere on the planet with both audio and visual web cam capability to have key conferences about anything and everything?

Personally I use these applications (and indeed other of the Google products such as their Google Earth, Google Desktop, gmail and of course their search engine) as part of knowledge sharing and knowledge management related to Genealogy.

The tools mentioned above can connect anyone with known members of their family available on line to build on individual data and photo collections and then through on line real time document sharing and discussion actually save hundreds of person hours of searching and recording.

Each person in a different country can add to the mix data which only they can easily find in their own country and then through collaboration build on the knowledge of the whole group as well as benefit new family members as they come on line to "join the party" as it were.

The beauty of this collaborative effort can then be further presented through Google Blogs or Google Web pages or for those still addicted to paper through Adobe Acrobat conversion on the fly.

Last, but by no means least, because the products mentioned enable strict security controls on who can read and who can read and edit documentation, view and edit pictures, work together in audio visual conferencing etc. etc. the combination of the products create a better outcome for users within one setting than can be found in most corporate settings where they are still mucking about trying to create networks that operate throughout their corporate structure much less throughout the whole world.

Alas I am not a shareholder of this company, but whether it survives or not is irrelevant to me as their products are FREE.

Is there anyone out there who can match this combination of tools for knowledge gathering and management at the price anywhere?

I suspect not. But, hey, it's just a suggestion"

I waiting to see what sort of thrashing I get on line.

Then I can ask Leanne for some more pain management medication. This time though, I have to confess I have no idea where she can apply it, nor what level of pain I can ascribe to the outcome.

After all, the thrashing will only be applied on line, so the pain as well as its application, will be virtual.

Then again I may have wrecked this 'on line' wonder for those of us who use it. As firms start to find their financial backs to the wall and no longer have the megabucks to purchase corporate licences for other products maybe they will have to resort to my suggestion as the way to go.

It would be interesting to see if there was a corporate take up of the ideas in my suggestion.

I hope not, I really like to see people wasting their time and our money, don't you?

After all, if they work in government, they will get their money back in taxes and if they are in private enterprise they get it back through fees and charges.

Genealogy a treatment for those who are dying

2008-11-13T19:52:00.003+11:00

I have spent the last four days totally immersed in genealogy related work.

I have been given some information about Camden Pioneers and from this information together with my data base and a look at BDM NSW (Births Deaths and Marriages) on line, I have been able to find distant family members with the surname of Adams, Roots, Emery, Buttenshaw and all of their links to the S family and of course to each other. I have confirmed stuff I know, changed stuff where the source from BDM tells me I must and adding rounding out things that are interesting.

In other words I have been working hard, but having fun and realising that while we live one life only, by sharing stuff about ourselves we are contributing to the prolongation of memories that others have about us and also ensuring that those who have never known us can get an idea about who we were and how we lived and enjoyed our lives - or not

What's Happening?

2008-11-10T13:46:00.003+11:00

Hi everyone, it's been a while.

I have not been writing because in all truth the material I want to share is not really suitable for this blog. I want talk about politics, about the financial crisis, change in the world and not the same old same old about me. So from today I will be going BACK to my normal and main blog at Pete's Place

Updates about my illness etc wqill still remain right here but items that I wish to comment on will be placed on the other site.

How is my illness? To be perfectly honest I have no idea.

My oncologist was surprised (hopefully delighted) that I was still around and my doctor from the Hospice was delighted that his suggestions thus far have kept me from oblivion.

I have a lot of oedema in my limbs and pain in my right arm. In discussions about this I have some reading to do about bier blocks and about having a neural block in the arm. Essentially what seems to be proposed is that by killing off the nerves in the arm and the hand the pain will go bye bye as well. Alas what this is also likely to mean is that the arm does not function at all either.

Before I have a completely dead right hand and arm I think I would like to think about the pain and my ability to tolerate it versus having no pain with a dead arm just hanging by my side.

I think I will get back to people about this when I have done all the relevant reading. Off the top of my head I am not sure I can handle a deead hand as the price for lessening of the pain.

Apart from that we have beeb busy with other matters that I wiil now discuss on Pete's Pages.

Birthdays, Friends and genealogy - what more can you want? Freedom from pain and frustration for one thing

2008-11-02T16:52:00.010+11:00

We had a lovely time celebrating a birthday for one of the members of this group of people from l-r Nancy, Steve and Roberta. Leanne and I were both there of course , with me being somewhat worse for wear. The sunshine was very pleasant and by the time the clouds rolled in and the wind turned less than nice the afternoon was over and with it went the joys of the day

The food prepared by our gourmet chef consisted of slow cooked Moroccan veal with cous cous and vegetables, to be followed up with a spectacular desert of home made Tiramisu.

This was so nice in fact, that I actually tried to eat some of the desert and to my surprise I actually succeeded in getting a small portion down my throat. It's nice to know that Marmaduke has competition, albeit in a very small and insignificant way.

Pain is still the major event in my day and at present it requires what is known as breakthrough medication every four to six hours. It appears that the oedema in the right hand and the legs is not getting any better and the pain that accompanies this is excruciating.

I am also troubled by sleep during the night having fears about all sorts of things and being kept awake by all of these. I keep hoping that things will get better, but I suspect that this is not going to be the case.

So now, it's off to my makeshift day lounge where I can elevate those legs and try and reduce the swelling. I then look forward to being reconnected to Marmaduke and with a little luck, get some sleep after all this while the Saturday night movies drone on around me.

Yesterday I was fortunate to have a visit from a former work colleague called Salim who is also doing family research and unfortunately experiencing far more problems than I am. So if anyone knows how to get information from Turkish authorities about the populations of the countries that were part of their empire prior to the first world war, please let me know so that I can pass this on to him. Frankly I am out of my depth for both the periods and the locations of the research. Apart from the Mormons who may have been allowed into the areas that were ruled by the Turks prior to the first world war and who of course may have an office here in town.

PAIN, GENEALOGY and Cirque du Soleil

2008-11-01T11:58:00.006+11:00

It's been a while since I last wrote. Yep, you guessed it, pain.

A couple of weeks ago I had some massage done and it was lovely. Then I had it again and once again it was lovely, then I had another session which I recall as lovely as well. At some point after this though, my right arm started aching more than normal.

We have had this looked at and we think its the pain killing drug I am taking. One of the possible side effects seems to be to cause swelling - oedema I think it's called - in limbs. Since my legs and ONE arm have swollen - its a smallish leap to make this connection. So what to do? In the interim SUFFER - that was written under pain duress - there are other drugs taken for breakthrough pain which I can take four to six hourly. I could of course stop the other drug but that would let through even more pain (go figger)

There may be a hope in the drug's earlier version which does not have the side effect.(No doubt it has others) and do I am not stupid enough to mention its name in the open.

We will see.

Meanwhile genealogy occupies my brain when it's awake and relatively pain free for both my family and Leanne's side.

On my side things are a bit slow, but on Leanne's side may I say in the words of Fats Waller, "The joint is jumpin!"

I joined Genes Reunited the other day - a pommy run site, paid my money, and even this non colonial boy is getting a lesson in organisation. I have had hot flashes from people I have never heard of who may turn out to relatives on Leanne's side. Some have been kind enough to send links to their ancestry site and I have had a wonderful time just starting to look at them and see who we have in my data base and who we need to add. It's simply fabulous!

Speaking of fabulous we went to see Cirque du Soleil - THIS is sheer magic.

It's not often that I advertise places but you simply have to check this out. Try Cirque du Soleil

We sat four rows from the front really in the thick of the action and it was fast and furious. At times I thought we would be part of the show like some poor unfortunate (probably a member of the cast) who was behind us at the start and then suddenly at the bidding of one of the clowns (if I dare call them that they were so much more) he was starting to clamber down over the seats to the end of our row (and we were in seats 9, 10 and 11) from whence action began with the clowns chasing him to do things like read the program etc with more jokes happening along the way.

There were people who did things with a trampoline we never learned at school including climbing walls that from my position must have been at least 20 - 30 feet high.

Then there were the acrobats, the fliers, the tumblers, the jugglers etc. but, what flying, what tumbling and what juggling. Amazing stuff.

Don't just read about it, get up off your well polished behinds and go and see them, they are simply magic and not in Canberra all that long.

(Yeah, go on you sceptics do check the site and just TRY and find any ways in which I am making money from this. Just once I am doing it for the lurve!

Immersed in genealogy

2008-10-28T08:41:00.007+11:00

We are delighted to have with us Nancy, Leanne's mother and genealogist extraordinary.

So far, the visit has been wonderful. We are all enjoying it and getting better acquainted by the day. Nancy has brought with her books and books on the extended family and loads of pictures and photographs of relevance to the establishment of sufficient information to write a "book" about her immediate family so that this information can be added to the work already done on other parts of the larger extended family.

I don't know what the rest of you out there would do with such a treasure. I for one am going to use her skills and knowledge while I have the chance. In the process I sincerely hope that both Leanne and I will learn heaps about the family.

For those of you who have not tried it, DO try Picassa Web albums as a place to store pictures and Genes Reunited as a place to store and to find ancestors from the UK in particular.

Never tried them before so this will be an experience.

Genealogy - what of it?

2008-10-24T08:28:00.016+11:00

One of my posts recently received a comment from Kathy, (see "Massage, Fishing, Genealogy and ????") someone who was a relative, for a while.

Let me explain.

Kathy finally pulled the plug on the notion that we were family, long after Leanne and I had visited England, to meet her and her family and reunite a family broken by the tyranny of distance.

England? Yes you all know the place. It's that island off the coast of France, normally our real destination, and one we usually visit, because it is filled with eye popping antiques as well as charming people, a lovely new language and good food to boot. Leanne of course would add fabulous castles, sights, markets, paintings, churches, the Tour de France, museums, etc

Alas, while this country has all these benefits, Leanne's family's name does have other connotations in France and in French that are less desirable and no, I am not going into that

Further research had apparently revealed that we were not related, Kathy wrote, after a period of time when we had returned to Australia.

Australia, a country to which alas, her ancestors had not been able to gain the 1 pound one way trip that other, more privileged migrants like those in Leanne's family had been able to acquire, a trip that cost 10 pounds for my family, probably because of inflation or because of government policies which saw Alexander Downer's father as the Minister of Immigration. (No I am not going to explore the "like father like son" nature of this portfolio.)

Furthermore she did not have ancestors who had earned a FREE trip to Australia, courtesy of the government, a 'reward' if you like, for the work they had done in the home country, not unlike some other of Leanne's ancestors.

It turned out though, that the trip to England was not wasted. All of the now, suddenly non family members, were a joy to meet and get to know. Whether they were family or not did not matter at all.

Furthermore, Kathy is a serious researcher in genealogical matters, unlike myself, who merely has pretensions in this regard, she was and remains a fabulous person to get to know. You will note her offer to assist in the genealogical research when Leanne's mother comes to stay with us for a while. Alas, you will not be able to see the blog where all of this work will be published as it is reserved and secured for family members and of course for friends who have a need to know.

But I digress, while doing some genealogical research myself today, I needed an idle moment, a happy moment, not a frustrated moment and so just for the heck of it and because you always start searching alphabetically, I asked Google to find me connections with the word Auspitz, this being the name of one of the families that make up my genealogical background.

Wikipedia led to at least at least one connections that was of the right era, the right overall location, but at first sight less than useful. Allow me to list it below:

"Auspitz's sign is the appearance of punctate bleeding spots when psoriasis scales are scraped off, named after Heinrich Auspitz. (http://en.wikipedia.org/wiki/Auspitz%27s_sign)
Heinrich Auspitz (1835 in Nikolsburg, Moravia – 1886 in Vienna) was an Austrian dermatologist. Trained at the University of Vienna, he specialised in dermatology and syphilis. He was part of the famous Vienna School of Dermatology, and studied and worked with other eminent dermatologists of the time, Ernst Wilhelm Ritter von Brücke (1819-1892), Carl Freiherr von Rokitansky (1804-1878), Josef Skoda (1805-1881), Johann Ritter von Oppolzer (1808-1871), and Ferdinand Ritter von Hebra (1816-1880). From 1863 to 1886 he worked as a professor of dermatology at the University of Vienna. He was also the director of the general policlinic from 1872 and became the chief of a clinical station upon the death of Hermann Edler von Zeissl (1817-1884).

A pioneer in tissue pathology, he described the pinpoint bleeding on removal of a psoriasis scale that bears his name: Auspitz's sign.
http://en.wikipedia.org/wiki/Heinrich_Auspitz

It is unlikely that this Auspitz was a family member though as we will see the time and place where he was born, has connotations for families with a Jewish background.

Then came the "Auspitz Family Tree" published on line. I was amazed to find this, then quickly disappointed. It was close. Once again it had the right names, the right location and even the right religion with a history of some members incarcerated in German concentration camps and so on.

Alas, still no connection to the Auspitz twig (I am now thinking of it as a mere sapling or a tiny branch of a much larger tree,) to which I and many others that have been located, do belong.

On one site there was a connection simply trawling for people who would pay big bucks to consult their 'superior' databases. As a teaser they listed some free data bases. Of these, some would not connect, others had a simple message, "no results", but then came a link to the US Social Security death index data base and this had names that were either the same or similar to those in my data base, but completely unrelated as they were in the USA and mine were not (for the same period).

Since I had neither the time nor the inclination to pay the big bucks, I kept on trawling myself and found the Lieben - Auspitz Palace in the heart of Vienna. I simply could not resist a look.

The Palais Lieben-Auspitz at the Ringstraße in Vienna, next to the Burgtheater. Former residential seat (Ringstraßenpalais) of the Jewish aristocratic Lieben and Auspitz families. The Nazis "aryanised" the building in 1938 and forced the owners to flee, many of whom died in exile or the concentration camps. The palace used to house a famous literary salon, a plaque next to the Café Landtmann points to it. http://commons.wikimedia.org/wiki/Image:Palais_Lieben-Auspitz_Vienna_June_2006_391.jpg

This was more like it, I thought, these people were the sort of relatives one would want to have. Not knowing any among them however I will have to ask the other relatives.

Sadly, but with a little more hope I scrolled on.

There appears to be a place called Auspitz in the Czech Republic at: Longitude: 16° 44' 0" East
Latitude: 48° 56' 0" North. There was mention of Jewish families in the area, but when there were references to an aristocratic family called Auspitz von Artenegg I simply knew I had probably wandered into the wrong space.

The history of the Jews in Hungary (and what is now the Czech republic) is mixed. Some people loved them, some needed them for commercial purposes and then eliminated them when things were better. Read all about it at the following link: http://www3.sympatico.ca/thidas/Hungarian-history/outline.html

So perhaps my family have a connection with a bunch of tobacco traders who started out from Nikolsburg and ended up in Pest and of course there is a mention of a Simon Auspitz who was a leading member of the Jewish community in Moravia, perhaps not.

But once again I digress, though I could go on , this period is really interesting.

The point I am trying to make is that the search for ancestors, for family can be, an exciting and absorbing hobby not to mention an exciting though often frustrating history lesson. When it really comes right down to it, I am just as interested in Leanne's family history as I am in mine.

My family history teaches me about one large chunk of European history and the start of the new lands of America and to a lesser extent Australia, while Leanne's teaches me about England at its hey day and all those places this little country managed to conquer.

All in all I learn a little more about the world through the multiple lenses of those who came before us.

When the search throws up really nice and helpful people like Kathy and her family, the experience is just fantastic.

However be prepared for rejection too.

The experience also enables me to think about how the wheel turns and about how likely (or not) it is that I may yet see the changing of the guard when what were then the new worlds of Australia and America experience what it was like for the Chinese and the Indians and others around the world who had their empires in former days, and who may now have another "go".

Iran is making noises once again, Russia is pulling together a cartel like OPEC, but with gas supplies, the Chinese have just finished their blockbuster advertising session with the Olympics and through this exercise shown the world what they are capable of. The Indians, once with an empire of their own may not be ready just yet but their turn may yet come again to be the "leader of the pack." After all, they are winning at cricket at last!

I just hope I am around to see the fall out of the current economic gloom and doom, protected in my cocoon by "Kevin 07" in 09 and on.

Recently resurrected from my archives

2008-10-23T19:48:00.001+11:00

Some People may forget but . . . . .

Some people may forget certain photos and remarks, but then again others may not.

I only forget where I got it from. The wording on the photo is not helpful, a Google search did not give me a source, but I assume it was taken in 2000 or thereabouts and in recent times as the race for the presidency takes on a more serious bent it becomes ever more interesting and dare I say appropriate.

Massage, Fishing, Genealogy and ????

2008-10-23T18:46:00.005+11:00

It's not often that I use these pages for an apology to one and all, but I will on this occasion.

I have been off the air now for a few days because parts of my body did not respond well to a massage I received recently. Suffice it to say that I was in agonising pain and thinking that this was neurological pain I just suffered. Stupid me.

Leanne, bless her was smart enough to seek advice. What this has achieved is the intake of some of the pain medication we have available and while not removing this pain in its entirety, it has reduced it to a dull roar, so that I could type this blog entry for example.

All I can say is fantastic and thanks to Joan at the hospice, whose advice has led to this outcome.

As my mind turns to fishing or similar outdoor activities (unlikely, but a nice pipe dream) it can also turn to other activities like genealogy not only for my immediate family on my parent's side, but also for the family of my nearest and dearest.

In other words I will be available again for consultations, visits etc sooner than expected, but will be less available when we receive an important visit from Leanne's mum who is without any doubt the most knowledgeable person in the study of the Sales and Adams genealogy.

I suspect that part of her proposed visit is to gather all the material available and put them together to produce a book. If this turns out to be the case I will be busier than a blue tailed fly!

With summer coming, THAT is busy!

Looking forward to hearing from you all just so I can stay in touch with the real world instead of the world of the past. Though I have to say that with all the sheer terror I feel coming from people frightened for their future because of the financial crisis many of you may be too busy to write or to call - try garpet on Skype instead [grin]

Kathleen and David.

2008-10-18T17:31:00.005+11:00

David and Kathleen paid us a visit today. What welcome visitors they are. I have worked with Kathleen in the past and I hope that those times are remembered as fondly by her as they have been by me.

David, Peter, Kathleen

I honestly cannot recall all of the topics we managed to discuss, but very low among these were the elections in the ACT. Perhaps this was due to the fact that David and Kathleen live interstate from us and so the subject gripping the heart and mind of those living in the ACT did not seem to be as important in their minds as they did, briefly, in ours.

I know that Leanne and I went to the polls at around 10 am and noted that the new rules were in force, preventing anyone from handing out information about the candidates within 100 metres of the polling booths. I wonder if this caused any difficulties for some undecided voters.

Back to our guests. David and Kathleen are really two of the nicest people I know and there are occasions when I wonder how having children has affected them. You see we have not as yet met these children so I call them, 'Phantom Offspring.' I have said to Kathleen and David that I do not believe of their existence. I simply find it difficult to believe that anyone could stay as sane as they both have in the midst of a large growing family. Until I see them, and not just on photos, I choose to remain sceptical.

I think we had a lovely visit and I know that the sunny and mild weather outdoors was really a great backdrop to their visit.

Pleasant Afternoon

2008-10-17T20:34:00.003+11:00

Leanne and I had a very pleasant afternoon entertaining Penny Sullivan, a friend she met on the work scene some time ago.

Leanne and Penny

Penny is living in the ACT now and like Leanne is interested in beading. So far, Leanne has found, or at least gathered around herself a number of people who enjoy this craft or "obsession" as Leanne commented when I asked her what to call beading in this note to you all.

I fully expect the house to be turned into a beading haven on certain days of the week when Marmaduke and I will be surrounded by women making beautiful things. Now if only Leanne would enable this to happen when Marmaduke and I are not connected

I have been engrossed with matters to do with the family Genealogy and have been handed a gold mine by one of my fellow genealogists who lives in Hungary.

He has been fortunate enough to literally bump into relatives visiting Hungary whom he recognised from the pictures that were sent to him by the grandparents. Simply amazing!

Jozsef, who features today on another blog of mine reserved for family members only, has struck a very large bit of information in one sitting so to speak. The collection of names he has sent me will keep me busy for days and it was a great pleasure chatting with him on Skype. Joska and his wife seem to be very nice people, it's sad that they are so far away.

From the BBC - an interesting story

2008-10-17T10:06:00.004+11:00

From the BBC News on 16 Oct 2008 I managed to glean the following tit bit.

Please read this extract, then re-read it and put it into the context of the US Presidential elections in a few weeks time, the current melt down of financial institutions and perhaps even our little Territory wide elections here in Canberra tomorrow:

A US judge has thrown out a case against God, ruling that because the defendant has no address, legal papers cannot be served.
The suit was launched by Nebraska state senator Ernie Chambers, who said he might appeal against the ruling.
He sought a permanent injunction to prevent the "death, destruction and terrorisation" caused by God.
'God knows everything'
Mr Chambers sued God last year. He said God had threatened him and the people of Nebraska and had inflicted "widespread death, destruction and terrorisation of millions upon millions of the Earth's inhabitants".

What can you say to this?

In my case I say:

Thank God we have representatives who have not quite lost their senses
Thank God my father chose to come to this country rather than the USA when we were refugees.
Thank God we managed to land jobs in the ACT where we now have a chance to elect some sensible representatives tomorrow.

A sequence of "Irish jokes" provided for my amusement by my visitor on 13th October - this is the first of three

2008-10-16T09:38:00.004+11:00

Two Irishmen walk into a pet shop in Dingle, they walk over to the bird section and Gerry says to Paddy, 'Dat's dem.'
The owner comes over and asks if he can help them.

'Yeah, we'll take four of dem dere little budgies in dat cage up dere,' says Gerry.

The owner puts the budgies in a cardboard box. Paddy and Gerry pay for the birds, leave the shop and get into Gerry's truck to drive to the top of the ConnorPass.

At the Connor Pass , Gerry looks down at the 1000 foot drop and says, 'Dis looks like a grand place.'

He takes two birds out of the box, puts one on each shoulder and jumps off the cliff. Paddy watches as the budgies
fly off and Gerry falls all the way to the bottom, killing himself stone dead.

Looking down at the remains of his best pal, Paddy shakes his head and says,

'Fook dat. Dis budgie jumping is too fook'n dangerous for me!'

THERE'S MORE...

The second in this sequence of Irish jokes sent to me by my visitor of October 13th

2008-10-16T09:32:00.002+11:00

Moment's later; Seamus arrives up at ConnorPass.
He's been to the pet shop too and walks up to the edge of the cliff carrying another cardboard box in one hand and a shotgun in the other.

'Hi, Paddy, watch dis,' Seamus says.

He takes a parrot from the box and lets him fly free. He then throws himself over the edge of the cliff with the gun.

Paddy watches as half way down, Seamus takes the gun and shoots the parrot.

Seamus continues to plummet down and down until he hits the bottom and breaks every bone in his body.

Paddy shakes his head and says,

'And I'm never trying dat parrot shooting either!'

IT IS NOT OVER YET...

The third and final in this sequence of Irish jokes from my October 13th visitor

2008-10-16T09:28:00.005+11:00

Paddy is just getting over the shock of losing two friends when Sean appears. He's also been to the pet shop and is carrying a cardboard box out of which he pulls a chicken.

Sean then takes the chicken by its legs and hurls himself off the cliff and disappears down and down until he hits
a rock and breaks his spine.

Once more Paddy shakes his head.

'Fook dat, lads. First dere was Gerry with his budgie jumping, den Seamus parrot shooting...and now Sean and his fook'n hengliding!'

What can you say after all that [sigh]

Snusher Meets Garpet or the other way around

2008-10-16T07:32:00.004+11:00

Wow What a Build up!

Set out below is the article published by Peter Davis (aka snusher - something we will discuss a little later on) on his blog "Cancer at the Junction" on Monday, October 13, 2008 under the heading:

Snusher meets Garpet. Hungarian blogging guru rolls out red carpet in Gordon.

"Well at last we have got to meet the man and his wonderful partner Leanne!

Today
Lynne & I headed down the motorway 30 minutes south from Evatt, Belconnen to the far lower reaches of Canberra, Tuggeranong [disparagingly referred to as North Cooma] for a meet with Peter Garas [Garpet] and his partner Leanne at their home in the suburb of Gordon.

Peter describes his occupation in his own blogger profile as a 'blog writer', and his output is indeed prolific. It was the continuing blog http://garpet1.blogspot.com of his own experience with gastro oesophageal cancer, right here in Canberra, that gave me information and encouragement from the first days of my diagnosis in October 2007. He has had the same surgeon & oncologist as me. To meet him and Leanne was a real treat. The man himself was unchained from his feeding pole [nicknamed Marmaduke] and was free to greet us at the door. He & Leanne rolled out the red carpet for us and over several hours we engaged in free flowing
conversation across a whole range of topics. Talk of cancer & its treatment was only a small [but important] part of proceedings. We could not resist the chance to compare scars, made by the same surgeon!

The one on his stomach has healed so well that you can hardly see it!

Garpet now receives all his nutrition via a feeding tube [his oesphagus is constricted so he cannot swallow], and he patiently watched on while Lynne & I enjoyed the salmon, rye bread, capers, gherkins, dolmades, cheese & grapes that Leanne so generously provided. We in turn got to see Peter take on board a ration of fluids skillfully administered through a syringe by Leanne via his feeding tube.

Peter's voice was quiet but firm, and I could feel a real sense of engagement with this intellectual, articulate, urbane and widely travelled man. I had taken over a grab bag of books & CDs that reflected some of my interests...the usual culprits that you all know, sundials, French sundials, Captain Cook, cacti, astronomy, tarot, old maps, baroque music & family history. Lynne & Leanne also found much to discuss and several hours went by in a flash. Peter & Leanne are
gregarious and popular people; while we were there a long time friend from Sydney called in for a quick visit.

The whole episode was a delight, and well, I cannot wait until the next time...perhaps next month? This is one of the up sides of cancer..the lovely people you get to meet by force of circumstance!!

Just for the record today I had my routine 6 weekly port flush at the Belconnen Health Centre.

Thats all for now folks.

Peter Snusher Davis
Canberra, Australia
snusher@gmail.com"

Peter, I have to say that your article was so complimentary that I could do no better than to publish it to my readers as well. Thank you.

It was inspirational to be able to meet you and your delightful wife. It was a rare treat to learn that were it not for an accident of time, I might very well have met her in another capacity at the local hospice.

I have to say that I was awed by the subject matter you carried around in your Green bag. I learned so much on the day about so many things that had previously not entered my range of interests. For example, I was familiar with the Tarot being used in the telling of futures, but not with it's use as a complex card game, that you assured me, was similar to bridge. As a former bridge player of little repute (a fact that can be attested by many of those who have come to know me well since I literally stepped off the boat in 1957) I can tell you that I was completely unaware of this fact.

As for some of your other interests, like sundials, or more narrowly, French sundials, ils sont formidable, mon ami.

To learn that you speak fluent French (and probably other languages) puts you in a class that it is, if not unique, well up there with the most talented people with whom I can claim some connection.

What you may not have seen was that Leanne also very skilfully administered the medication that I had to have at that time of the day. I would literally be nothing without her these days.

Yes indeed all in all an exceptionally enjoyable visit and one that I too hope can repeated, whether in our "north Cooma" residence, perhaps yours or if the time is well chosen, (i.e. between 7 am and 6 pm) a 'neutral' scenic spot of great ambiance.

I promised my readers a brief digression about 'snusher" Apparently this is Peter's ancestral name. That is to say that people in his family once were called snusher and in his genealogical searches, Peter is searching for any connections to this name.

So dear readers, if you wish to be helpful, then please let Peter know as and when you DO come across this name. His email address is listed above.

Monday meeting with the author of Cancer at the Junction - "Snusher" aka Peter Davis

2008-10-11T15:20:00.005+11:00

This is a photo of me taken by Leanne outside 'The Boathouse' in Canberra. Behind me is the lake and some residential units around Kingston (I think). In case you can't read the caption on the T shirt it says: "I'm not INSENSITIVE I just don't give a crap'

This certainly was and indeed is the way I have been feeling all day!

My state of my emotional health has been created by both the neurological pain in my right arm and hand as well as the headlines in the Canberra Times that make reference to "Black Friday"

All this is by way of a 'lead in' to the real story of the day, namely that I will finally get to meet "SNUSHER" aka Peter Davis, a fellow oesophageal cancer victim in Canberra who recently wrote in his blog about me and my blog and who has apparently been finding some of my scribbles (probably the earlier ones) useful in his journey with this horrible illness.

The date for our meeting is Monday next and I look forward to hearing about his journey as I have only been able to see snippets on his blog Cancer at the Junction http://www.ecsnusher.blogspot.com

I look forward to this meeting, but I sincerely hope that Peter's journey will not take the by-way that mine has taken.

It's highly likely that one or both of us will report on the meeting, so you can spend your days searching for the differences.

On the other hand, you could just go fishing or do something else that's useful right?

Hot News

2008-10-08T17:08:00.002+11:00

This is a brief and one off announcement. Following a recent visit to the office of the dietitian I have been advised that my rate of weight gain is too high. Accordingly I am now able to advise my readers that Marmaduke and I will no longer be tethered to one another between the hours of around 7 am and 6 pm.

In short folks, while it is my intention to be with Marmaduke at my side during evenings and nights, my days will once again be free for other things.

As the weather improves and the days increase in temperature it seems that I will be free and hopefully fit enough for daytime assignations.

Seriously for a moment, it means that provided that I am well enough, I should be able do things during the day that were impossible when I had a deadline that required me to be connected to my feeding tube from 2 pm.

I can go on excursions, try fishing in the lake again, find people with similar time frame openings to play cards (just like those old fellers do on the picture post cards from Greece or southern Italy etc.) In other words to be a man of leisure.

I will not be the sort of person who oozes anxiety as I watch what is happening in our and the world's economies, nor will I display anxiety as I read the news and wonder which hell the world is heading for.

No, no my friends all those worries are already behind me.

I look forward to the good times, as well as spending time on the family history, hoping that family in Boston, re-discovered through advice about a 90 th anniversary birthday in that town, will identify at least one family member who has enough time to "download" this matriarch and send me the data that is gathered. In that way I can advance one of my pet projects, putting together as much of the family history as I can so as to provide a legacy for those who remain behind after my demise.

If friends from my past life want to use a lunch time to catch up then a phone call will do the trick to arrange a place and time. The hard part might be to arrange for Leanne to drive me there.

Still, one can but try.

Let's hear from you if you are interested in exploring these new boundaries.

PS I need someone to fish with, that someone being generous enough to help me tie my lures to the line as my right hand is incapacitated.

Saturday and Sunday revisited

2008-10-06T11:54:00.002+11:00

This picture is of Roberta and Stephen two of Leanne's friends who came to visit us. I certainly hope to get to know them better in the near future, they are both delightful people. Alas, when they arrived on this occasion I was both exhausted by an earlier visit to another delightful couple and by something that was happening in my stomach. I know it's the last place from which to expect trouble because I have not been using it for months. Still mysterious things can happen when I am not hooked up to Marmaduke.

Saturday and Sunday were visiting days. Leanne and I were either being visited by people or in the car visiting others. It is really a wonderful feeling to be able to use the few hours when I am unhooked from the feeding tube and actually able to travel.

We were of course embarrassed to realise that we had totally missed the news about it being daylight saving and so we found we had 'lost' an hour and were arriving late on one of our visits. Egg foo yung on face is NOT the most comfortable thing to wear. Thankfully our hosts were very gracious.

Leanne's home made jams appear to be a hit, as has been her first attempt to make a cake from the Vizvari Mariska Hungarian cook book. It was apparently either a great success or people were being unusually kind. The number of pieces scoffed would suggest that the first explanation is the correct one. There is a delightful story about the acquisition of this out of print cook book. However I will not bother to write about it here - you can ask me when we next see each other.

All this lovely tucker being devoured with me looking longingly at certain items but being unable to participate. Sigh!

Actually we will have to talk to the dietitian because I am putting on weight. This was desirable, but now is becoming a pain. If she agrees that I can take less of the Ensure Plus it will mean more time free of Marmaduke - all in all not a bad outcome.

But I digress. It's thanks to all those who came to see us or who were generous enough to have us in their homes.

I have not provided photos of others either because they stated that they did not wish to appear on the blog or because I was idiotic enough to have either left the camera at home or getting so involved in the conversation that I forgot to take photos.

If there are any suggestions from my readers about successfully handling neuropathic pain I would love to hear about their experiences, my right hand and arm is in need of some new ideas.

So that's all for this entry. I sincerely hope that I can write about other world related issues in my other blogs. I am particularly interested in starting a conversation or thread about the economy and what's likely to happen to us all as a result of what is happening elsewhere. Is anyone else interested? If so let me know.

Friday

2008-10-03T21:49:00.006+10:00

Today has been one of the more interesting days since my release from the hospice. It has been filled with fun, sun and excitement.

'Wow, I wish I had days like that,' I hear you all mumbling under your breath while I punch out the details on this page.

The day began as usual with me waking at the crack of dawn and then lying quietly under the covers waiting for Marmaduke (yes you remember Marmaduke, he is the feeding pole and pump) to complete his cycle and beep to announce that finally he had emptied the contents from the one litre flask of nutrients into my body. This was around 7 am.

Leanne, awakened by the sound, was like an athlete in training. She sprang out from under the covers, muttering something about 'coming', then rushing to my side of the bed with a single mission in life, to remove the plug to Marmaduke and then arrange to flush the peg tube with water.

A few more days like today and she will be well enough conditioned to undertake the tasks and then turn around and slip right back under the covers again and continue sleeping until her exhaustion is at least partly assuaged and she rises at another time when she is truly well rested.

Not yet though, not today. Today she stayed awake, though I suspect that every bone in her body was silently screaming at her to get back into bed and to stop playing the heroine carer role thrust upon her by circumstances and recognise that every body has limitations and that she had reached hers.

No, not today. Today meant helping me to shower, dress, receive the morning round of medication and then to take advantage of the streaming sunshine and almost summer temperatures outside in the backyard where the large outdoors umbrella had to be erected, the plastic chairs covered and a large pillow placed on the table so that I could place my big clod hopper like feet on it, well above the heart, thereby hoping to reduce the oedema, a relatively new development, that seems to have overtaken me recently.

If all this was not enough there was of course the need to get herself washed and dressed and ready for the day. This was followed by the preparation of breakfast for one washing up and then more tidying up, with winter gear being packed away and more of the summer gear being made accessible.

Are you tired yet? I am and I was just watching and getting myself underfoot when my 'role' was clear, get the hell out of the way.

Emotions are still raw. When there is something that can remind Leanne about her father and recent events they are overwhelming and require time out and an escape from the daily grind.

No such luck today.

Today we went into the hospital to try and get a lighter version of Marmaduke, something we managed to partially accomplish. Then with the long weekend being almost upon us we needed to take in supplies and so first a trip to purchase ink cartridges for our printers and then a trip to the local ALDI was indicated and we picked up supplies for one and potential visitors. (So some of you had better come and meet planning expectations by being available to eat the goodies obtained)

I forgot to mention that we had our regular weekly visit from the nursing staff of the Palliative Care program who come to change the dressing on the peg tube. I was meant to take a picture for display here tonight, but she snuck out the door before I could do the deed. Given the quality of the photos I have been taking lately this was probably a good move on her part.

Later in the afternoon one of Leanne's work colleagues arrived with a floral tribute from the colleagues at her work place. I took photos of course but they were SO bad that Leanne has forbidden my placing the results on line.

I am a bad boy, I am disobeying part of her command. I managed to save the shot of the flowers at least so that people can see how lovely they are and how much staff at her work place feel with and for her in this sorrow filled time as she continues to mourn the passing of her beloved dad.

It's now just the time to await Marmaduke completing his duties with yet another flask of goodies and then attach the last of the flasks for the day, then bed, to start the cycle again tomorrow.

Come on Down . . . .

2008-10-02T10:35:00.006+10:00

This is to inform you all that we have more or less settled in and are generally "at home" for those of you who would like to visit. A phone call in advance would be nice just to ensure that we do not have other plans or that I am OK enough to see people without nodding off. Apparently this is disconcerting to some, as they feel it reflects on the content of their conversation when in fact it's merely the side effect of some of my drugs.

The photos above were taken this morning featuring a small portion of the backyard with Leanne,as usual, looking competent and ready for anything while I have had to crop my photo to show my best features while hiding the bald spot and other aberrations.

I have no idea what other people are doing, but we are going to soak up the sunshine and 26 degree temperatures while we can. To hell with the news from Washington and elsewhere that might even as I type, knock off substantial portions of my superannuation.

There is nothing I can do about it. I can however do something about my vitamin D deficiency by exposing my pale winter blanched skin to the suns rays for at least 20 minutes, after which a nice beach umbrella will preserve me from further harm.

All this and fresh air too.

What are you doing today?

We are told the Romans had bread and circuses to entertain them while Rome burnt, Nero had his fiddle. I guess all we can hope for is something similar if we have access to CNN, that way we can all watch the demise of the American Empire.

Now if only I had a violin, two hands that still work and some talent . . . .

Thanks for your condolences

2008-10-01T16:01:00.004+10:00

Many thanks to those of you who have sent messages of condolence at the recent death of my father.

I cannot say how shocked and stunned we all have been. It is still unbelievable as he was fit, healthy, took no medications and this tragic accident seems as if it was so avoidable. It has robbed us of at least 15 years more with him and my family and I are quite inconsolable, as he was in such excellent health, being well on the way to beating his mother's record of 98 years.

The autopsy was inconclusive as to the sequence of events that led to his death and so there will have to be a coroner's inquest which could take more than a year before it is held. My own view is that he was leaning to pick some oranges for me (at my sister's home which is only about 50 metres from my parent's home on their property)and he either tripped and hit his head on the galvanised pipe fence post, falling to hit his neck on the electric fence, the pulse of which then caused his heart beat to falter and stop OR he hit his neck on the fence and then hit his head and then his heart stopped. What the medical examiner did say is that there was absolutely no sign of heart disease, no arterio sclerosis, no sign of an exit site for electrocution so all of them a re ruled out but there was a slightly enlarged heart. Our view is that this was due to the extremely hard physical work he did all his life including working as a blacksmith from a young age with his father, but we may never know the real reason he died.

What I can say is that I tried very hard to bring him back when I found him lying on his side in the paddock about 10 to 15 minutes after he left my mother and I cooking dinner. Unfortunately, either I was just a few minutes too late and/or my attempts at CPR were not successful or not skilled enough. I hoped to bring him back but there was no heartbeat when I found him, although the small amount of blood on his forehead was still wet and warm which would suggest I was not long in finding him.

Anyway, we gave him a very good send off with close to 250 - 300 people in attendance at the funeral and graveside. I wrote the Eulogy (with additions from my sister, mother and brother) which my brother and I delivered and my sister read dad's favourite poem "Bannerman of the Dandenong" by Alice Werner. My sister and I organised the funeral and my mother and brother organised the organist and grave digger. It was a very personal but dignified service. My sister, Narelle, organised Waratahs from the Wollondilly shire, grevilleas from her father in law's garden and other native flowers through the florist which meant the flowers were just beautiful and special.

So dad is buried at St James Anglican Church in Luddenham, only 200 metres from where he lived all his life and from where he was baptised. He knew all the graves, where the stone ridge runs through the church yard and did a lot of work in and around the church. His parents, grandparents, sister, aunts and uncles, cousin and many others are with him there and while the cemetery has been closed, my mother, siblings and I will all be there in due course too.

Thanks once more for all your support whether that's been through email messages, phone calls, flowers, visits and hugs. I appreciate it very much. You've heard it, no doubt, a million times before, but something like this really makes you think about what you want to do with and how you want to live your life, because it can be so shockingly suddenly taken away. The message I take from all this is to cling to the good people and things in life, discard the irrelevant and think about living each week as well as you can.

Salut for now - Leanne

Tethered to Marmaduke and other matters

2008-10-01T15:30:00.004+10:00

I am writing this for Peter as he is feeling confined and frustrated by Marmaduke, also known as the IV drip pole, on which hangs his 1 litre of Ensure Plus.

Today we have been out together, albeit to undertake a few small tasks in Belconnen (northern suburbs of Canberra). The weather was sunny and still, so Peter was keen to take advantage of the softness of the climate and the few hours of freedom from the 16 hours of being tethered to Marmaduke (i.e feeding), to go out from the house. We visited an old acquaintance at her new shop in the Jamieson Centre (selling pearls and jewellery)for a few minutes and then chose some appropriate mounts and framing for a piece of needlework for my sister, from the only place in Canberra that does it properly (Antoinette's Fine Framing).

After that the leisurely 1/2 hour drive back home was punctuated with a couple of other minor stops before getting home in time for more medications and finally Marmaduke at 2pm.

The sheer delight of being out of the house on a lovely, clear and sunny spring day and of being together, rather than separated, cannot be underestimated. The freedom to go somewhere together which was not medically related, after more than 4 months of illness and treatment regimes, was a small but treasured delight.

Poor Peter was, naturally, very tired after this brief excursion and the few hundred metres of walking it entailed. However, I am hopeful that it is the start of being able to gradually reclaim some stamina and also assist in reducing the swelling he has in his ankles which appeared last week.

Trying to get the routine back into synch has been somewhat of a challenge as it is the same but different because the new peg tube we had to have inserted is less malleable and more difficult to use. Also we are unused to each other's habits and requirements at night again and need to re-establish a mechanism that suits both of us not just one or the other. On the home front,Peter is now very keen to have visitors and to see people generally. So please make contact if you are local as we would love to have you drop by. I think that we need to ensure this happens otherwise he will be left with only me for company and that is not optimal when I am so taken up with all the daily practicalities of keeping him and the house in order.

So with the milder weather coming on we may be able to spend a little more time out of doors while ever Peter feels well enough.

Enough for now. Best wishes to you all - Leanne

Days at Home

2008-09-30T20:27:00.002+10:00

Well, back from the hospice and finding things very different. For example, I can't call a nurse when I need one. I can ring Leanne of course, but she is a problem she gets to me without a grumble, but once awake she finds it difficult to get back to sleep. Nurses do things in shifts so they are always available (mind you they can be found to grumble from time to time - it's probably because they are doing a double shift) I simply have to invent a way for getting through the night without assistance. Sigh!

Meanwhile, just for the nursing staff at the hospice, the dressing CAN be changed to a Statlock I now know this for sure because we did it today. Now all I have to figure out is how to clamp it off when required. At the moment we are trying my iron grip in a pinch.

We attended the 3 monthly review with our oncologist and he indicated that my bloods are better, not perfect, but better. That was pleasing, however when I jokingly asked if I was cured he gave me a fixed stare and advised I should be glad I am walking around. THAT was sobering!

Went to quickly meet up with one friend who works across the road at TCH and then it was home.

My hand is at present my sorest point and the drugs for keeping this pain under control are not working well, will have ask about increasing the dose or ???

We have been watching the news and seeing our superannuation going to the dogs while being amused by those ads on the TV that advise people to put their savings into superannuation. All this while at the same time we note how people in situations like mine need some hoard of cash to pay for medicines. Just two boxes of stuff are well over the $100. If those pharmaceutical companies get into problems as a result of the financial crisis I guess they will just raise their prices while we who need them, just have to pay for the privilege of staying alive. "It is always thus" says some sad voice from the ether behind me.

I think I will call it a night and get some sleep then on the other hand Marmaduke or whatever we are going to call the new pole on which hangs my feed will not be ready for hours yet. Sigh!

For those of the Jewish faith who are reading this blog Happy New Year!

Now to sleep, perchance to dream . . .

Retrospective - Part 5

2008-09-28T18:55:00.009+10:00

You all know who you are and all I am allowed to say is "Thank You, It has been a pleasure."

Retrospective - Part 4

2008-09-26T13:47:00.006+10:00

I have not been adding to this blog for a reason (or three). I have discovered that hospice life can be quite busy, leaving little room for little pleasures like writing a blog. No I am NOT referring to the life of the staff, although I suspect the criteria apply to them as well. I am referring to patients.

In my case I wake by at least 6:00 am. This is normal for me and is not the result of some awful tearing pain or mishap caused by medication. Though I have to say that for other inhabitants this may well be the case.

Having woken, if I am not assailed with a desperate need to clear my bronchi, nasal passages or some other part of my anatomy I find that I have time - usually only a few minutes - to rush to what is known as the Family Room where the hospice computer is located.

Here, I have just enough time to check my email and deal with it, before one of the nursing staff locates me and tells me that I have to have my early morning 'meds'.

If the timing is right then there is a chance, just a chance mind you, that the bottle of feed to which I have been attached throughout the night, has run its course and I can be unattached from it and start my favourite time of day at the hospice, the time when I am FREE from any attachments and have to endure only two more rounds of medications at 8:00 am and mid-day. Then it's a hook-up once again to the machine that feeds me, provides my drink and allows medication to be provided to me - the PEG between 1:30 and 2:00 pm. The PEG is simply a tube that has been inserted into my duodenum, (the stomach not being where it should be,) and then secured in place by some ingenious dressings.

'Henry' as I would like to call this appendage is both vital to my well being, but also a nuisance and a worry. The worry being that if it slips out and for some reason cannot be replaced I am 'cactus'.

Still at least at this point, if all is right with the world, I can look out of my window and observe the fish that are jumping (no doubt for insects) and the other water birds going about their routines. For those who are not early risers let me just say, you are missing a really lovely time of the day when all is still, until the morning madness of the rush hour starts at the very periphery of vision on the roads and at the airport.

By 8.00 am I am usually called for my main round of Meds (medications). One of the nursing staff assigned to that part of the building where I am located is the 'chosen one' for the day (and generally for a few days thereafter) to administer the medications and then when this round is completed perhaps assist me with my ablutions. Yes folks, my illness and its ramifications are reducing me to a state of disability and a state where I need help with washing my hair and the rest of my corpus as well. Sine the advent of a loss of functionality in my right hand and arm I need assistance to be able to do the things that can generally only be done with both hands and of course with things that can only be done by the right hand.

I digress.

If the computer terminal is free I can continue to record the events on the blog, until my work is interrupted in the most delightful way by one (or more) of the volunteers. It is generally a welcome interruption and one that I have learnt to take advantage of.

What a wonderful, dedicated and diverse bunch of men and women they are (or in inverse order women and men - I will not have it said that I am sexist)

There seems to be a volunteer here from most walks of life and because of this, engaging in conversation with them provides an opportunity for both parties to learn things about each other of course, but often also about things in the world that, were it not for the encounter at the hospice, I would never have encountered. Perhaps for some of the volunteers, a similar experience arises when they hear about my interests and experiences.

I don't know anything about their training by Palliative Care Society of the ACT, but I am sure that by getting in touch with the organisers, anyone who wishes to consider participating as a volunteer can find out more.

Were it not for them, staying with and just being there, I am not sure I would have survived some of the nights I have had when the effects of the illness in combination with the medication have left me feeling really out of it, scared out of my wits, helpless and very vulnerable.

I hope to be able to feature photos of just some of the wonderful people I have met during my stay at Clare Holland House when I get back home to the equipment that will enable me to undertake those functions. Anyone featured will have been asked for their permission to appear on the site and the vary fact of their appearance will indicate that they have done so. For those whose photos I have not as yet been able to take - please pop around -alas on the weekend - and I will try and get your photo included. To those whom I have encountered to date, thank you I have really valued the contact and your assistance.

If anyone out there in the public has had someone in the family for whom they have cared and who has been in the hospice, please post comments to this blog and tell us all what you encountered during that time. In this way you can also decide whether you wish to remain in touch.

I will be going home soon and I know that I certainly want or at least would like to be able to stay in touch with some of the people I have met at the hospice and if they wish to get in touch with me to write to me at pgaras@google.com or look up this web site for on going material at www.garpet1.blogspot.com .

This is all I have time for today (or at least now) as my 2:00 pm Meds moment arrives and I welcome back my connection with 'Henry'.

2008-09-23T14:16:00.000+10:00

When you are writing these stories, sometime after the events that took place here, it can be a little difficult to raise enthusiasm for the effort required to put the fingers of one hand to work on the key board. This is especially the case when I receive feedback only from a few of you, either in person, (by means of a visit to the hospice) or in writing either by means of a letter to me as the editor of the blog or in person if you know me or as a comment to the blog. For those of you who have managed to write, thank you.

Of course occasionally I do get some really bizarre feedback, as was the case this morning, when I received a note seeking my comments on the American debate between Obama and McClain camps about American Health care.

So I will tease your interest even further than normal by including the exchange as my contribution today instead of an article about what goes on in the hospice

Herewith the exchange with my reply first to the lettter that popped up in my in tray.

Dear Marjorie,

I am an Australian.

I have little knowledge of, or interest in, your health system, I am sufficiently involved in dealing with Australian issues (including my own) to have time to to learn about, much less write about the mess in your country.

All I can perhaps add to the debate is perhaps a very tongue in cheek comment, that those who are still looking for the land of the 'free' need to find 'the home of the brave,' because their search is likely to be a bumpy ride.

I have however forwarded a copy of your note to some other people I know who may have more time to assist you even though they too are from Australia

PG
Editor
Pete's Pages
Written from Care Holland House

2008/9/22 Marjorie Saenz
- Hide quoted text -

Dear Pete's Pages, Administrator

The topic of health care in the 2008 U.S. presidential election is one that is high on the minds of Americans. However, while most people are well aware of the immense challenges facing our health system (rising costs of medical care, malpractice, high prescription drug costs, medical bankruptcies, employers dropping coverage, 47 million uninsured Americans, etc.), they have less understanding of the specific solutions proposed by Senators Obama and McCain.

We invite you to write a post about the topic of health care in '08. There are clear policy differences between the Obama and McCain plans, who come from two differing philosophies on health care reform.

"HealthDecision '08: Obama and McCain on Health Care" is an initiative by HealthCare.com (http://www.healthcare.com) to help potential voters understand each candidate's position. It is an objective comparison of the two platforms, and provides analysis as to the strengths and weaknesses of each. Most importantly, HealthDecision '08 provides an interactive voting tool that allows users to "vote" for a preferred plan. HealthDecision can be accessed at http://decision.healthcare.com/obama-mccain/.

HealthDecision '08 will provide you with much of the primary research with which to form a post. In addition, we provide you with links to third-party election coverage from Health08.org, NPR, The New England Journal of Medicine, NY Times, National Journal, U.S. News, WebMD and many other sites, that may serve as supplemental information sources.

I hope you'll join us in our effort to raise voter understanding on this very important issue. We hope that you will use our information, and also link your readers to our site in order to have their voices heard.

Lastly, if you're interested in posting real-time results of the HealthDecision '08 poll, please reply to this email for instructions on embedded our widget onto your blog.

Thank you.

To your health,

Marjorie Saenz
HealthCare.com
http://decision.healthcare.com/obama-mccain/

A Retrospective - Part 3

2008-09-22T12:26:00.004+10:00

We left the adventures at the hospice at the stage where Leanne was going to go home to get a good night's sleep and then having packed the car with all she would require for her respite period, drop in on me at the hospice in passing.

As for me, my first night was filled with trepidation.

Would the nursing staff be able to handle my sense of humour this being a difficult enough thing for people not under pressure in their work? Alternately could I cease and desist from using this 'feature' of my personality for the duration?

Could they manage with all the complex instructions that had been provided by Leanne (soon to be captured in a 30 page booklet)?

How would they adjust to the 'requirement' stated in the booklet to feed each medication separately with commentary on what each each item was called, what it was for and then ensure that the system was flushed both before and after each item of medication was given. This practice being designed by Leanne to ensure that I received sufficient fluids to help deal with the presence of too much urea in blood tests.

Would people remember to add two sachets of salt to the 'food' being delivered through the peg tube ensuring that the levels were right?

Aside from this, the realisation hit with stunning force and suddenness, that while Leanne and I had been separated for long periods of time in our time together over the years, this was at a time when both of us were 'healthy' (read independent and mobile with the use of all our limbs and faculties).

During the lead up to this stay at the hospice my condition (read physical and probably mental,) had deteriorated to the point where I was unsteady on my feet to the point that I had actually fallen over once and had tried to walk and found myself unable to do so without the aid of the walker and then only for short distances (the length of the hallway connecting the rooms in the house in which we live, being the distance referred to and, unable to communicate because I ran out of air trying to form and state words without my vocal cords operating adequately - and sometimes at all.)

In short, at home, with each passing day, I felt as though I was becoming more and more dependent and frankly, scared of being alone in case anything happened that I could not handle.

We had been taking care of this reality by using the services of volunteers who were kind enough to mind me and look out for me while I lay in bed requiring additional pain medication and really being out of it and generally unable to even communicate with them. Their presence enabled Leanne to meet with friends, find some hours of time away from the grind of dealing with my needs all the time and having access to some life outside of that.

In recognition of this situation and state of affairs, I am embarrassed to report that I asked if it was possible for a volunteer to sit with me. This was made possible and I want to use this opportunity to thank all those who made it possible. I also regret to report that it had been a long day and I was exhausted so the land of nod found me to be a willing and capable resident. I slept through the night waking only when the calls of nature required and recall feeling tremendous guilt along side the gratitude when I saw my 'guardian' perched in one of the chairs with a hand knitted shawl to keep her warm. Thank you!

More to come. (Note: when this has been read andd approved by the hospice management.PG)

A Retrospective - Part 2 Arrival at the Hospice

2008-09-19T12:06:00.004+10:00

Gear packed along with our (read my)anxiety, we arrived at the hospice.

If there was paperwork, I was not aware of it, I was only able to take in "my room."

This is at the end of a long corridor and (I was to learn later on)one of the later additions to the place, thanks to generous donations that helped to convert a four bed ward into four separate private rooms.

What a room!

It is equipped with mod cons that I do not have at home. Just think, a hospital bed that can be raised or lowered in three places, a flat screen TV a HUGE en-suite with every aid to the infirm you can imagine, a bar fridge and of course cupboard space for your clothes WITH coat hangers, a reading light, and, wonder of wonders, a balcony that you can reach via your own sliding door, equipped with two metal garden chairs and a matching table.

Marvellous!

What people should know is that the location of the place is in itself a miracle of sorts. Set on just a small part of the lake that is the heart of Canberra, the view from "my room" is spectacular. A part of the lake foreshore with two black swans from Western Australia majestically gliding on the surface, seemingly the owners of all they can survey until they have to feed. It is at this time that they come close to the shoreline and bob their long necks underwater until there remains only the view of their nether portions, with two webbed feet scrabbling comically for balance and depth.

Other denizens of this vista, include ducks and their cute little ducklings, magpies that swoop on a crow that seems to have passed into their territory, rabbits everywhere along the banks, with at least four burrows immediately identifiable and at least three or four sets of loving pigeons.

The birds that really draw your attention though are superb wrens and some finches where the male of the species is coloured red around the head and neck. There is more wildlife and some cattle wandering around, but frankly, this is all I could see and name in the brief moments I had after arrival.

We settled in.

My gear was unpacked and stored in the cupboard and the bedside set of drawers I seem to have overlooked in my inventory above. The medicines that were brought from home were strategically placed within easy reach and once again it was explained to me what was where. The controls for the bed, TV and other things were explored until I was familiar with them and then my loved one and I entered what I will refer to here as the "separation and departure phase" of arrival at the hospice. We hugged to ensure that we knew what we would be missing (each other in case anyone needs a hint) and said our good-byes. This was made a unique situation by the fact that for the first time in my life I honestly think I understand the meaning of that American phrase "missing you already."

Leanne decided to delay her departure for another day just to see how I would manage without her.

Leanne left and my adventure, my sojourn commenced, albeit with the proviso that I would see her again the next day.

None of my pre-planning or even simply thinking about what it would be like to stay at the hospice prepared me for what was to come next.

"But that's another story" as the barman said in "Irma la Douce."

A Retrospective - Preparation for the big move

2008-09-18T10:57:00.015+10:00

Having finally found the computer terminal in the hospice, learnt to log on, recall my password for the blog etc with great difficulty, through a fog bank of induced memory loss, I stared at the key board, formerly my friend, now my challenge, and then started to compose, this humble and meagre offering.

It attempts to be a little "retrospective", exploring feelings 'views' and incidents or events about coming to and staying in the hospice - later contributions will try and explore snapshots of life in the hospice ......

Coming to a hospice in a palliative care setting is quite a traumatic thing to do. At least it was for us.

Days of mental and physical preparation are required and both Leanne and I had work to do.

Alas I did not want to go so I am afraid that at the time my condition was such that I could well call upon it to explain why I was work shy. My contribution was negligible and really lacking any substance.

Miracle worker that she is, Leanne was able to handle the decision making and associated workload with aplomb while I gibbered with fear at even the prospect of being severed from my safety lines, the familiarity of our home, the incredible levels of personal care provided by Leanne and the unfamiliarity with the hospice settings and its facilities for caring for me and my needs.

Leanne, bless her heart, prepared a "book" for the staff at the hospice outlining my personal and medical needs accompanied by a list of the medication to be taken along with information on when it needed to be taken (for example, if there was a time dependency for a given medicine or a need for one medication to be taken with another so that the impact and efficacy of both were to be enhanced)

All in all a brilliant effort and one to be considered by others.

In the lead up to arrival at the hospice much time was spent, this time by both of us, sharing our misgivings and stating them out loud. There was also time for reflection about the real need for Leanne to have real "Time Out".

We discussed the workload she had shouldered because of my illness and our relationship, a workload that it would now take shifts of nursing staff along with other allied health professionals and shifts of volunteers to undertake.

It was in truth as plain as the nose on my face that the rest was required and nothing my selfish brain could invent about MY needs could even start to compete for attention.

Finally dates were picked, arrangements finalised and it was off to my new 'home' for two weeks.

Leanne was I think in a dreadful state, largely due I feel to my selfish fears and anxieties about the new circumstances and her other real needs to visit with her family and have 'time out'. For this I apologise. I hope I have learnt my lesson and will do my utmost to resolve issues like thiss early. I am afraid I can't promise not to be selfish, the bet I think I can do is to recognise when I am selfish and then deal with it - quickly.

I can only suggest to others, based on my experience to do the exploration and sharing of feelings. These were great value and very useful.

Funeral advice

2008-09-18T10:57:00.013+10:00

Folks,

Just a quick note.

I am led to understand that the funeral of Leanne's father will be on Tuesday next, so if you wish to have your condolences conveyed to the family, the window of opportunity is tight.

It is my expectation at this point that Leanne would wish to have more time out after the funeral and I have some ideas about how long this might be, however they are my ideas and so need her input. I have asked the hospice administration if they could extend my stay and this request will no doubt be passed up the line to wherever decisions are made. I have also told the administrator that Leanne is likely to come back to Canberra to get clothes to wear for the funeral so there may be an opportunity for a face to face discussion to take place. I expects that this is likely to happen on the week-end.

From the Hospice

2008-09-16T08:40:00.002+10:00

Folks, I am sad to say that I am having to try write to this blog myself for the time being, because a most devastating event has taken place that prevents Leanne from continuing her stirling work.

I regret having to be the one to let everyone know that Leanne's father, Colin Sales passed away on the weekend in what appears to have been a bizarre accident at the family home. What's even worse is that Leanne was the one to find him and so have to deal with trying to revive him, call for help and so on.

I am sure that all of you who have come to know Leanne, will want to send your condolences and best wishes to her.

I guess one way you can do this is via email to me (pgaras@gmail.com) I will pass on your messages as best I can to her.

Of course if you would rather send your message to Leanne's in box (leanne_sales3@hotmail.com) and just send a copy to me you will be able to ensure that she gets a personal copy when she is once again in a position to read and to respond to emails again.

I have access to a terminal from here so I can try, when I am well enough, to read and respond to your mails as they arrive.

The news has other implications for my situation and will mean a more extended stay in the hospice than expected. This however is of far lesser importance than ensuring that Leanne is OK

Col was 83 and probably the heathiest of all the family. An amazing man of many talents who is missed greatly by all of us who had the priviledge of knowing him. Personally I can tell you that the news has left me somewaht shell shocked with disbelief.

More when I can persuade the fingers of my left hand to do some more work.

Peter

Peter is in the Hospice

2008-09-08T21:47:00.002+10:00

Hello all - as agreed, I am writing this quick up date to let you know that at 8.30am this morning I rang Clare Holland House and they had a bed reserved for Peter.

So it took me from then until 1.30pm to get Peter, washed, dressed, medicated, packed, and generally organised and we got to the hospice just before 2pm. He has a lovely room (Room 10) overlooking the eastern view of Lake Burley Griffin and has his own bench in the sun out through the sliding glass door. It is a lovely view! I stayed with him until 7pm, completing all the admission documentation and inducting the nurse into the arcane issues of Peter's health and how his feeds have to be done etc. I have taken in his favourite mohair blankets and pillow, remade his bed to provide a "low-sweat" environment with the vinyl covered mattress covered with a cotton blanket, spoken with the doctor, unpacked and adjusted things for him to be easily reached and organised for a nebuliser and oxygen to be at his bedside. I am hopeful that all this will make him feel more secure.

I know Peter feels a sense of abandonment but I have told him that is not the case and this respite is to let me have a break so I can keep on caring for him and also provide time for me to see my family. I left him tonight with 2 nurses offering to massage his feet and rub his back, to which he agreed, so I hope that he has a positive night.

Tomorrow I am taking him to see the Ear, Nose and Throat specialist as we were lucky to get a cancellation, so I will spend more time with him tomorrow and then head up to my parents on Wednesday.

While he is not feeling 100% I think he would appreciate visits from local friends as I think he is worried he may feel lonely from time to time, even if he is not able to talk a great deal. I understand that visiting hours are not fixed, but Peter is probably better during the day than later in the evening, for anyone wishing to visit.

Anyway, I will write again if there's anything of interest from the ENT specialist or later when I return from my parents if there isn't.

Thank you for your emails and phone calls - all of which are very much appreciated even if I don't reply. Cheers for now - Leanne

A slightly better week

2008-09-07T17:51:00.004+10:00

This week has definitely been better than last week, with only a few occurrences which were of concern.

The antibiotics seem to be clearing up Peter's chest infection this week, with the coughing and sputum being greatly reduced. He is currently on the 3rd continuous antibiotic prescription which ends on Tuesday and I really hope this will be enough to get rid of the infection for good. However, the side effects are that he feels dreadfully nauseous and sick and that makes him very miserable.

However, the pain has not decreased much and I have increased the number of times he has paracetemol and codeine to assist and there has been some limited success there but only for an hour or two. The pall care specialist was keen for Peter to come into the hospice this week because his medication is not well adjusted at the moment and they also had a bed available but Peter declined on 2 occasions. On Wednesday his right hand, was swollen and bluish purple at the fingers and I was concerned the fluid was either related to medication side effects or circulation problems. Another call to the pall care team and Dr Pacl called our GP who visited at lunch time and suggested that it was all to do with the nerve damage and something called RSD (which sounded reasonable at the time but as I didn't write it down I now no longer know what it is). So nothing much to be done there, perhaps raising it so that the fluid drains and that's about it but definitely not a drug reaction as that would have been in both hands. As previously mentioned the right arm is now entirely without function and is as if Peter has had a stroke. He can't do much with it at all and the hand won't close, the fingers don't work and he finds it incredibly painful (major pins and needles all the time) and distressing.

In the early hours of Friday morning, after a toilet break, Peter felt he couldn't breathe properly and despite me providing him with the nebuliser and ventolin and doing all the things he needs, he felt I wasn't doing enough and was putting his life in jeopardy. So I rang the 24 hour pall care line and they advised me to do as I was doing, give increased oxygen saturation and administer hydromorphone. Peter also talked to them but wasn't happy with that and wanted an ambulance, so I called the emergency number and after discussion and advising them of the situation they spoke with Peter and reassured him (he was in fact breathing okay, if a little laboured and speaking in full sentences etc). So the "link" team nurses came out about 3.30am and by the time they came to see him and I had done all that was suggested, he was calmer, breathing well and the distress had faded. The trouble is that at night Peter gets more worried and distressed and this can escalate, as it did the other evening. I don't blame him as when you are so sick and your nose, throat and chest are all feeling constricted or blocked it's a very distressing thing.

On Friday, during business hours, I rang to try to bring forward the appointment with the Ear Nose and Throat specialist as the restriction in his throat seems to be getting worse and I think that's the thing that frightens him most. I am hopeful there may be a cancellation appointment tomorrow that we can have so we can ask the specialist to look down Peter's throat and see what is happening and whether something can be done to assist him.

Apart from these eventful moments, I was able to go out for a couple of hours on Tuesday and met up with a friend who has moved to Canberra from Darwin with her husband. We had a lovely time albeit it was too short and a bit rushed.

Spring has arrived - pink blossoms on the fruit trees, weekly clothes wash that actually dried outside in the fresh air and we have planted a new Fig tree (Black Genoa) which I hope will thrive and yield lots of fabulous figs in a couple of years.

I have also been trying to get organised in case a bed comes up in the hospice (Clare Holland House) next week, as they have booked Peter in for up to 2 weeks so I can have some respite to visit my parents. Apparently, tomorrow morning I will have to phone to see if there is a vacancy and if so I will take Peter and all his equipment in by early afternoon (as it will take me that long to get everything organised). If there isn't a vacancy then we will meander on as usual here at home.

Peter is not pleased about going but is keen for me to see my parents and have a few days off from the 24 hour care, so he knows there's no alternative. I know we will both miss each other desperately as we have only been apart for no more than 4 days in the past 13 years, but the thought of a night of unbroken sleep, as well as my mother's cakes and chicken roast is a great lure, not to mention playing with my 7 year old niece and hearing dad's stories about the old days - they are all compelling reasons to find some time every now and again to spend with them.

If Peter is admitted to the hospice I will post another message in the next day or so. If not, look out for next Sunday's news. Best wishes to you all - Leanne

Some good and okay news

2008-08-31T13:44:00.003+10:00

What a week we have had! But then, on recollection, I seem to say that each week. Peter's condition worsened on Monday and by Tuesday when we went to see Dr Yip, the oncologist, he was in great pain and feeling pretty poor all round. Dr Yip gave us another script for antibiotics as it is clear this chest infection is more stubborn.

However, there are 3 pieces of good news to gladden my heart.

The first good news is that the blood results show many signs of improvement on a range of the results.

However, there is poor uptake of thyroid medication. This can be attributed to some of the other things he is taking which interact with the effectiveness of the thyroxine and also that I was told to give the tablets to him first thing in the morning, which I have been doing religiously, only to find, when I found a product statement in the box in the fridge that I should have been giving him that either an hour before food or 3 hours after. So giving it to him as soon as his feed had ceased in the morning was not the right time at all and probably inhibited his uptake of the drug. I have since amended that practice and Dr Yip has increased his intake to 100 mcg so we will have to see if both those things make Peter feel better or not.

Starting on the antibiotic again on Tuesday afternoon has started to make a difference to the infection. Dr Yip also said the CT scan showed a large amount of liquid on the right lung.

The second piece of good-ish news is that the CT showed the cancer tumours are stable at the moment and so no extra chemotherapy is currently considered, especially with this infection. I had hoped that the news would be that they had shrunk or gone (that's a faint hope I know), but at least being stable is better than the verdict that they have grown.

The third piece of good news is that since I last weighed Peter a few weeks ago he has put on over 2 kilos in weight and is now about 70 kilos. Needing new batteries for the scales, and forgetting to buy them every time I was at the shops, meant that it's been a while since the last weighing. I can see there's slightly more of Peter now and he looks less malnourished.

Other good news is that Dr Pacl, the pain specialist (and gem beyond price or as Peter says "at last a competent doctor!") has increased his pain medication to 200 mcg of Fentanyl patches every 2 days and has given us a couple of practical hints to assist breathing. One of which is assisting already - "Breathe Easy Nasal strips" to assist in keeping the right nasal passage open. What magic!!

On the pain side, this is continuing to be a battle. Peter is back on Lyrica, an anti-epileptic drug which has been knocking him for six - hallucinations, unsteadiness on his feet, groggy and slurring speech to name a few of the side effects Hopefully these will get under control and Dr Pacl has knocked the dose in half for a few days to see if that helps.

The problem with this is that it has set back his exercise and physical improvement plan as he is so unsteady and groggy that he's not safe on his feet. He has also been having continuous and involuntary body jerking which is worrying in terms of perhaps falling out of the recliner chair or bed.

The issue with the hallucinations is that while some of them are amusing (after the fact), some are dangerous. On Friday night, we had a really bad time. Instead of Peter being up about 3 times in the night and needing some assistance, on Friday it was over 8 times and some were distressing. On one occasion I heard him get up and saw him walking towards the bedroom door with the feed tube still attached and the possibility that the IV pole would fall on top of him and the peg tube be ripped out of his duodenum. I yelled "Stop, stop, stop" and he came to in time for me to get him back to bed before any damage was done. He told me he had to get through the doors as there was a machine there for the French and German governments that he had to see to. Earlier, I heard something happening with the IV pole and found him grabbing it and it leaning at a dangerous angle over him in bed with a full bottle of feed. Previously, when I was in the family room watching TV he had tried to climb over the bed to the phone to ring me as he had dreamt that he had received a message from me that I was in trouble and needed help.

The problem is he currently can't decipher between what is a dream and reality this week and I think it is all connected to the increased and extra medication he is on. Still his "projects" as he calls them are pretty interesting and complex. He just told me he was waiting on some paperwork for some legal cases; yesterday, he was negotiating a multi-million dollar contract and also working on negotiating a resolution in the Balkans as well as being at the UN. He often sees people in the room and talks to them. My main concern is that he doesn't hurt himself, doesn't fall or pull out the peg tube as the latter is a serious problem. Apparently the peg site would close over within 2 hours and he would have to be admitted to hospital for a new one to be put in and this one was very difficult to insert, but without it he has no means of getting fluids or nourishment and that just cannot be allowed to happen. If he falls or can't get around (at least the few steps to and from the bathroom) then that would make it really difficult to be able to keep caring for him at home on my own (unless there are some other you-beaut aids that would assist me) and that is something I just do not want to contemplate.

So at night, the bedroom is very noisy - usually the oxygen machine is on, the feed machine is on, Peter is moving in bed constantly, talking/whispering to his hallucinations, coughing up sputum and his chest is bubbling like a middle eastern water pipe. If I can get to sleep then I am woken by Peter needing to go to the toilet and he needs help to manoeuvre the IV pole around and get safely out of the bathroom. Unfortunately, I don't just go back to sleep so often I am just dozing off again when he needs something else an hour or so later. Some days it is okay and I don't feel too bad but sleep deprivation does make me a bit snappish and so having a nap in the afternoon, wherever possible has now become a must so I can build up a little store of sleep against the evening when it might not be possible to get very much and so I can be as helpful to Peter as possible.

Anyway, as usual our life is full of interesting and challenging things. One of the nice things was a whistle stop visit by Trevor from Sydney who was down for work and popped over for an hour on Thursday evening, which was great and a lovely surprise. I had hoped to schedule a couple of other visits with Peter's friends this week but things have been pretty difficult for Peter and so I have not done so in the hope that he will pick up once the infection and the new drugs are under control. Fingers crossed!!

This week, it's a lower key time with the GP and major house cleaning on Wednesday, pall care nurse on Tuesday and Friday and hopefully my volunteer coming in on Tuesday afternoon. Last week I was able to catch the Charles Bayliss photographic exhibition at the National Library (fabulous images of Sydney, Melbourne etc from 1875 and so on) and a few of the other magnificent photographs of the Northern Territory and Arnhem Land (spectacular is the word) by Richard Green "Wild Places" which I understand from the book shop assistant will be coming out in a book at some stage.

This week I may well catch up on some of the other exhibitions in the Parliamentary Triangle if I can make it. As I can only get around 3 or 3 and 1/2 hours away, it means I can get about 2 hours with some interesting exhibits excluding travel time so that's worthwhile.

Anyway, enough of these ramblings. I am off to attempt an afternoon nap and think of spring which is arriving tomorrow.

Cheers - Leanne

Sunday 24th August 2008

2008-08-24T18:00:00.002+10:00

As predicted last week was particularly hectic.

We had the OT visit on Monday to help us consider what might be useful in terms of grab rails in the bathrooms and toilets and the workman - who was a gem beyond price - came on Friday. After discussions with him and practical assessment of what was going to work and what might not with the actual pieces of hardware in hand, we had a grab rail installed in each shower cubicle, new hand held showers in each with 2 metre long articulated hoses for maximum flexibility and a small vertical grab rail at the toilet. All in all, with the workman's practical assistance, and forebearance with Peter's and my differences of opinion/recollection, that saved us over $400 and we were able to get rails in the almond colour that matches our tiles rather than ghastly stainless steel which always reminds me of hospitals and industrial applications. So that was a success.

We had the pall care nurse and GP visit on Tuesday; the CT scan was scheduled for Wednesday and that occurred reasonably smoothly and Friday we had the pall care nurse, grab rails and delivery of a delightfully named "throne accessory" from the plentiful and free supply from the Canberra Hospital's Equipment Loan Program. This I had to install, with some deft analysing of how the thing worked and manoeuvring of the toilet seat, screws etc out and then a couple of false starts and I got it in successfully. So now the main bathroom toilet has arm rests to assist all and sundry, but particularly Peter, to get off the toilet without having to be creative and perhaps have a potential fall.

Yesterday we also scheduled a visit from Kathleen and Dave who have been great supports over the past many months and with whom Peter has been keen to catch up, along with many others. They came here and the visit went very well. Peter really enjoyed their company and was very engaged but, as is to be expected, he was exhausted at the end of the day and was in pain.

As far as Peter's health goes this week the antibiotics did wonders for the lung infection and they finished on Wednesday. He had a great week, up watching the Olympics for several hours each day, doing his exercises and feeling pretty good and only disturbed once or twice during the nights . Then around Friday his condition started to show some signs of falling away again, especially over the weekend with more congestion/sputum and a very bad night last night - distressed and disturbed, up 5 times to the toilet, unable to breath, panicking and with escalating stress, fears and demands. So today he has not felt able to do any exercises, shower or engage in any way. I have commenced him on a medication the GP suggested which is to loosen the phlegm and help bring it up and while that seems to have started to kick in, like everything, it has its own side effects. So while we had the sweating under control last week, it has now commenced again as a side effect of the Bisolvin and, as usual, has a number of other effects which include breathlessness, nausea etc. I had been weaning Peter off unnecessary medications in the last couple of weeks, on medical advice so that recently he has been only on vitamins/minerals, ventolin, thyroid and arthritic medications (along with the pain medications of course). But now it looks as if we'll have to try to get on top of this chest thing again.

Anyway, today I spent almost all day in the bedroom with him and had a long nap this afternoon to try to catch up as if Peter is disturbed I am lucky to get 1 and 1/2 or 2 hours sleep in a row without disruption and last night's 4 or 5 disruptions meant I was feeling a little tetchy.
Hopefully tonight will be better and if not, then at least I have a small reserve from the nap this afternoon.

This week we have the appointment with the Oncologist, Dr Yip. Hopefully the CT scan and blood tests will be back and we will have some facts to go on in term of what's happening and how to proceed. The problem being Peter is always greatly distressed immediately before and after a visit to Dr Yip as the enormity of what is happening is laid out before us again and again. So I expect a few stressful days ahead for both of us.

Until next time. Salut - Leanne

Sunday 17 August 2008

2008-08-17T09:27:00.002+10:00

Hello everyone.

This week Peter has developed what looks like an infection in the lungs as he was bringing up greenish/yellow phlegm for a few days and sounded like a middle eastern bubble pipe when he lay down. He has started on antibiotics and even after 2 and 1/2 days, it seems to be clearing a little and he is starting to respond well to it - less coughing and less of the green phlegm.

Peter has also been doing some of the exercises the physiotherapist provided us and I think that he is starting to have a little increase in his capacity and also is slightly less unsteady on his feet within the past couple of days. We do the exercises together and when the weather is sunny, mild and still, he will walk up and down the driveway for a few minutes.

Also yesterday, he sat up in the recliner chair in the family room for the majority of the day and we watched some of the Olympic telecasts together. I think this was good as he seemed to sleep better in the evening and also said he felt less isolated as I was buzzing around doing the washing and other things but he was in the main living area while I was doing it. I am not sure whether he will need to rest for most of today as a result but at least he was out of bed.

This coming week we have the occupational therapist coming to see about getting grab rails installed in the bathrooms and toilet areas as Peter feels very unsteady a lot of the time and there's not much to grab onto. Naturally, we don't want him to have a fall in the wet areas as it would not only physically hurt him but shake his confidence again.

I am also attempting to organise a CT scan this week and blood tests but the Medical Imaging department of The Canberra Hospital lost the referral I dropped into them last Tuesday and so I am still waiting for contact about that.

Apart from those we will have the regular twice weekly visit from the palliative care nurse and the GP visit and I hope to be able to get a couple of hours off on Tuesday afternoon.

Nothing much else to report except spring must be coming as the apricot tree is starting to get some buds and flowers, so I am hopeful of another plentiful harvest at Christmas time for some more jam and stewed apricots.

Thanks for your ongoing interest and concern for both of us. Best wishes - Leanne

Monday 11 August 2008

2008-08-11T16:02:00.002+10:00

A week has flown by so quickly and I realise I haven't made an entry into the blog since last Monday.

Minor progress this week. While the pain medication through the patches is not working all the time, we are using the additional break through pain medication only about 2 or 3 times a day, which is apparently not a problem. No weight gain but the dietitian says that stable weight is a good thing and it may well take another few weeks of re-nourishing and building up the essential baseline nutritional elements before weight is gained, if it is going to occur.

Some better nights' sleep to report this week as well, which is helping me a great deal, and the nursing staff have withdrawn now to attending only twice per week. This is because the central line in his arm has been removed so only his peg tube has to be taken care of and I swab and clean the tube site each day. We still haven't got the sweating under control but it seems a little less this week, perhaps due to not using a hot water bottle to warm the right side which ends up overheating the rest of his body.

Most importantly, Peter is looking better in the face each week.

We have had a busy 3 days. Peter had 3 of his oldest friends visit - 2 from Sydney (John and Judy) and one from Zurich (Imre) en route to Armidale. It was not something he was initially wanting to do but, as I thought, he warmed to the idea over a couple of days. So on Saturday I was doing the large weekly wash (it feels like we have a family of 5 now instead of just the two of us), groceries and cooking until late. Sunday, along with the usual medication, showering and other routines, I included further cooking and tidying up so that by their arrival in the afternoon for a late lunch, almost everything was done. Peter, to my surprise, said he would get out of bed and join us at the dining table while we ate - while he was hooked up to his food fluids. This seemed a bit cruel (that he had to watch us eat a lovely meal when he couldn't but it wasn't something about which he seemed concerned.)

He was up for 3 hours or more and was very engaged, despite having had a shot of hydromorphone he seemed to hold his own well and was not too exhausted when they left about 5pm. (I think he enjoyed the stimulation and so I will start to work on having some small visits from other people in the coming days, especially where they don't coincide with medical visits and appointments which he finds tiring.)

On the other hand, after giving Peter further fluids and medications, I dropped into the recliner chair and was out like a light for an hour or so before getting back up to do the rest of the evening routine.

Today we have had the physiotherapist visit to help Peter with some exercises to assist in removing phlegm and help breathing, re-establish some stability and develop strength in the legs and also provide some minor exercises to halt the withering of the right arm, if that's at all possible. Peter is very motivated to try to do some of these exercises and he was very enthusiastic about the ones which he can do in bed.

We have no other appointments until the end of the month when we see Dr Yip the oncologist again, so we have a couple of weeks of relative peace ahead.

In the last week, I have also managed to get a couple of small breaks through the volunteers and was able to go to the National Gallery with a friend on Wednesday for a couple of hours and a very quick 2 hour visit to the craft and quilt fair on Friday - enough to buy some beads and pearls for future jewellery making. It has been great to have these couple of breaks but the time flashes by so quickly that it seems no time before it's time to drive back again. I hope to do a bit of shopping and add a few more interesting visits or catching up with friends over the next couple of weeks.

Other news - it snowed here at our house yesterday (great large floating snowflakes, not the small icy spots of a couple fo weeks ago) for the 1st time ever. It was -4 degrees C to a maximum of 8 degrees C and one of our coldest maximums this year. Both Peter and I couldn't believe it. It only lasted about 25 minutes but I captured a couple of photos, which will show it up, hopefully.

Anyway, that's all for now. Au revoir - Leanne

Monday 4 August 2008

2008-08-04T11:13:00.002+10:00

The past 5 days have been tiring for both Peter and I.

Wednesday afternoon he had the gastroscopy (with dilation of oesophagus) with Dr Thomson and had no ill effects apart from a bit of pink sputum afterwards. Apparently Dr Thomson was able to dilate Peters' oesophagus some more but not to the extent that he can go back to eating anything much again. Peter is too frightened to try to swallow anything at the moment so I have made some chicken broth which I hope he will have a few sips when he feels ready.

On Wednesday we were also changing Peter's pain medication from the Hydromorphone through the syringe driver to Fentanyl patches and there was an imbalance in the pain relief so Peter had a disturbed night and was up 5 times which meant I was also up and we didn't get much sleep. The pain medication also gives him a heightened dream state and so he spends a lot of the night talking to people who are not there - which is a bit disconcerting for him but also doesn't make for a restful night for me either.

So Thursday was tiring from the sleep deprivation. The patches had also come off as Peter has been having problems with uncontrolled body temperature since the 2006 surgery excised half his thyroid, cut the vagus and sympathetic nerves and also took out the tumour under the right collar bone. What this has meant though, is that he is cold on his right side and normal to hot on his left and to warm up the right overheats his left and leads to sweats. The sweating then undermines all dressings and patches in a day rather than the several days for which some of them are meant to last.

Anyway, I think we have found a place (right arm) where it is cooler than the rest and which will mean the patches stay on the skin. If this doesn't work in the long term then we will have to go to an oral solution which I will feed through the peg tube.

Peter was less and less disturbed as the nights wore on but had a very bad one on Saturday night when I had to give him several "break through" medications into the peg tube.

Also of concern, we tried a tiny visit to the outdoors yesterday afternoon, but Peter fell off the roller walker while not having the brakes on and trying to move out of the breeze. He fell directly onto the cement of the front porch near the front door on his right side - lower ribs/waist area. He now has purplish-red bruise there and it was deeply distressing for both of us - as it all happened in a couple of seconds. I was able to lift him up and get him into bed but it was stressful and we were both shaken. He forgets that he doesn't have the strength and that he has to use the brakes. No ill effects this morning though (apart from a little more pain) and the palliative care nurse has seen him and his bruising and is not concerned. So that's a relief, but somewhat shakes Peter's (and my) confidence about trying to get him to walk or go outside.

I hope this week that the pain medication situation is under control and that I might be able to get a few hours off to do a couple of things outside the house. Unless more medical things intervene I have lined up the lovely pall care volunteer we have been allocated to come in to sit with Peter for a few hours. So that should be good, as Peter is understandably more anxious not to be left alone following the fall.

Apart from all of that, he is spending 95% of his time in bed, asleep much of the time.

Tomorrow it will be 4 weeks since we started him on full adult fluid feeding and I can see he looks so much better. Although he says he feels distinctly unwell regardless of how he looks.

I also gave him a haircut and trimmed up his beard on Friday (thanks to the trusty Big W hair clipper set) and he has shed about 20 years from his face in a few minutes. It's amazing what removing some of the grey and bushy hair has done to make such a difference.

However, his right arm is losing more strength and condition and he says it is full of pins and needles and he has lost the sensation of anything but pressure in that arm and hand - a very distressing thing and one which undermines his ability to function independently. Bizarrely, his right leg is stronger than his left so he has this asymmetrical strength which puts him off balance as well.

Hopefully this week will have less in the way of medical interventions and more rest and recreation for Peter, as I need to get the opportunity to try to build him up again both mentally and physically and none of that gets to happen if there's a lot on the schedule.

On other news, my mother is in her final week of radiotherapy and will then see the professor some weeks after that. So far, she reports, all has gone well but I haven't had the opportunity to see her so I can't verify that. However, she sounds good on the phone and her voice is usually a give-away if there's something wrong.

Au revoir for now - Leanne

Wednesday 30th July

2008-07-30T10:45:00.002+10:00

This week we have had further excitement. Finally the electrician arrived on Monday and now the bedroom is well wired for extra plug sockets so hopefully there will be no more tripping over the several extra powerboards and leads I needed previously.

Yesterday, Tuesday, we visited Dr Yip, oncologist for the 3 week follow-up visit after the radiation and he suggested that it might be worthwhile if Dr Thomson (gastroscopist) had a look down Peter's oesophagus to see what's happening there as Peter is unable to swallow anything at all now with all fluids and liquid food being administered by me through the peg tube. Dr Yip thinks Peter is looking much better compared to when he was in hospital earlier this month and wants to see him again in 1 month, prior to which he will have a CT scan and then decisions will be made about what might need to be done in the future on the chemotherapy front.

Peter was feeling reasonably good at the end of the appointment and agreed to go to the Woden Plaza to see about the medical bills with me. So it was his first outing in a busy shopping mall for several months and it went well apart from when he needed to go to the toilet and I, unthinkingly, wheeled him into the men's toilet (not having thought about or seen a disabled one) and caused Peter extreme embarrassment as I pushed him in and proceeded to help him up while a few startled men were at the urinal!!! I, of course, couldn't care less but I feel sure, in hindsight, that some of the men were a bit disconcerted! Anyway, Peter hurriedly told me to get him out and to go to the disabled toilet he had seen (the sign was at his eye level when he was seated in the wheelchair but not at mine so I had totally missed it). Poor Peter he was very embarrassed. but we got through that and finished the tasks I needed to do before going home without further incident.

He was exceptionally tired as a result of the activity and needed some extra pain relief and rest in the afternoon but has recovered now.

Anyway, after we got home we received a call from Dr Thomson's rooms to say that he had a spot in Dr Thomson's list for today at 12.45pm and otherwise there wasn't one for 6 weeks. So, while Peter was not keen to have to take it up today, we have done all the necessary preparations and will be heading off shortly. Unfortunately, I will miss out on a bit of time to go to the National Gallery, which we had been planning for the volunteer to come and sit with Peter for this afternoon, but we will try for that next week.

In the meantime, many thanks to all of you who keep thinking of us both locally in Australia and those overseas. Special hello to our overseas friends and relatives who have been in recent contact: Sylvia and Robbie Rex (South Carolina and Vermont); Andrew Garas and children, Kathy and Ed Brown in New York; Deb and Eugene in New Hampshire in the USA; Jan and Reggy in Holland; Kathy Wallwork in England; Imre Bokor and Bea in Europe; and many others (sorry if I haven't mentioned your name specifically this time around).

I have to go now as I need to drive Peter to the Calvary Hospital for the procedure, so will write more when I have something further to report.

Au revoir - Leanne
Peter Spiro in Canada; George Thompson in Texas;

Friday 28th July

2008-07-25T09:37:00.002+10:00

As predicted we have had a busy week. The painters spent all of Monday here and got the job done with minimal disruption to Peter which was good. Naturally, the 2 days it took beforehand and the several days it is taking afterwards to get the house back into order is more exhausting for me than for Peter.

On Wednesday the GP visited and the blood results were available from the bloods taken on Tuesday. Peter's generally starting to pick up on many of the indicators now which is good. He is still low on a few things - eg. salt and his thyroid function is less than optimal so we have increased his Thyroxine to 75 micrograms and continue to pump him full of fibre, vitamins and his remianing couple of medications along with his fluids and feeds.

Yesterday we also went to see Dr Lyn Austen, radiation oncologist, for a follow-up consultation as it is 2 and 1/2 weeks since the end of the radiation. She was generally pleased with him - she stated he looks better and his strength and resistance when tested was pretty good despite Peter's concerns that he is weak and not feeling well. He has lost strength in his right arm and his motor movements are confirmed as being weak which Dr Austen confirmed could have been from the radiation as the area treated was in that range where it could affect his movement.

Peter was very concerned when she said that we need to keep an eye on how his movements are going as if the tumour moves into the spine he could become a paraplegic. Now this is Peter's 2nd most horrifying nightmare scenario, apart from choking/gasping for breath. So today he is very depressed. (This is not helped by the fact his pain has been breaking through the medication about an hour or so before the nurses arrive). It's very hard to face the thought of increasing decline in function to the point of total vulnerability and we both quake at the thought of what might lie ahead.

As he said to me this morning "I have spent my whole life trying to avoid this" (ie. cancer and physical decline). And isn't that the same for all, or at least most, of us? If we aren't having to face it within our family or friendship network, we live life with the hope that we will go in one fell swoop, without knowing a thing and it will be super quick. While in the meantime we live life as if we will always have health and independence. It's not until you go to the hospital (or work in one) that the vulnerability of the human condition faces you in every way possible. I know Peter always found hospitals hard places to be in and now that's the place or the system in which we spend a lot of time - a hard irony, that one!

Still waiting for the electrician to install the extra power points etc, but after that the house will feel more in order.

I am okay, just very tired this week. The pressure and disruption to get to a hospital appointment and manage all of the fluids and feeds is very tiring. Not helped by the fact that the car battery was flat when we went to go to the appointment and had to change to the other car to get to the appointment (but the NRMA mobile battery service did wonders when I called them later in the afternoon). However, we now have our disability pass so can park in disabled spots which is a very positive thing.

That's all for now. Salut - Leanne

Sunday 20th July 2008

2008-07-20T11:07:00.002+10:00

While the palliative care nurse is here replacing the syringe driver, I will write a few lines.

We have had a few quiet days following last week's frenzy which is good. Peter has spent most of the time sleeping but has also watched a couple of TV programs, which is a good sign. From tomorrow we will have the painters in to patch up some of the cracks that have appeared in the house during the drought and that will be a difficult day. I have put them off coming until 8.30am so I can have a bit of time to prepare for their arrival. Hopefully it will only take a day to do but I know it will be stressful for Peter.

On Wednesday I am expecting the electrician to come to install our extra power points to assist with all the extra equipment Peter needs and sensor lights; Thursday is an appointment to see Dr Austen, the radiation oncologist. So I don't expect we will have time to recuperate until Friday.

As for Peter, he has not gained any weight (in fact seems to have lost 30o grams but that could be due to the timing of the liquid food intake or bowel movements). He is starting to feel pain again now an hour or so before the nurses come, which we think may mean he is getting a bit used to the hydromorphone and may need a slightly greater dose for the same effect and that it is wearing off earlier. He has had a few disturbed nights when breaking out in sweat and feeling cold as a result so, I have had to buy in more flannelette pyjamas to back up the supply we had as he is going through 1 or 2 pairs a day now. I think I may have cleaned Canberra out of their supply as we have 8 pairs on the go now!

Breathing easily remains a problem and some days he is on the oxygen for almost 24 hours and others it is only a couple of hours. He only had it for a few hours yesterday but had to have it for the full day, the day before that.

I had the opportunity to have our lovely volunteer, Marg, come over for a few hours on Thursday, which allowed me the time to meet a friend for a quick Malaysian Laksa lunch and then get to the bank, medicare office, chemist and hardware store for some much needed supplies. It's good to know she will be available about once a week for that. I haven't yet had the opportunity to do anything more cultural or relaxing with the time but maybe that will come in the future. I can't really leave Peter before 1pm on any day as there is so much to be done, so afternoons work best for those minor excursions.

I am fine, apart from a fall in the house on wet floors on Wednesday. Only a jarred back and and a sore knee and hands. More concerning was that Peter tottered out to see what had happened, as I must have cried out, and then we were both limping back to the bedroom together, each more concerned about the other - which was quite funny in hindsight, but very worrying at the time! We are both very aware that we can't afford for anything adverse to happen to me or we are both well and truly "stuffed".

Meanwhile, my mother has reported that her radiotherapy treatment has been fine to date and she has not stopped cooking masses of cakes and pies, spring cleaning the house and generally working full on at all times. I really hope they get the remnants of this cancer and she recovers with no recurrence.

No other news to report so I will sign off. Au revoir - Leanne

Thursday 17 July 2008

2008-07-17T08:55:00.002+10:00

We have had a busy few days since the last update.

Yesterday Dr Pacl visited as did our GP, along with the plumber (leaking taps finally had to be dealt with) and the electrician (we need more power points in the bedroom as Peter's equipment, along with the heater, electric blanket, side lamp and TV etc are creating a real OH&S issue for both of us with too many extension cords, power boards and so on creating a trip hazard, not to mention my concern about possible power overloads).

Anyway, taps are dealt with, power points will happen next week and also the painter/plasterer who is coming in to patch up the large cracks opening up in the house due to the drought and our gradual descent down the hill to the end of the cul-de-sac.

Dr Pacl spent considerable time with Peter yesterday and as he hasn't seen him since 19 June, when Peter was only on small amounts of liquid food supplement, he declared that he looked better than the last visit which he felt was as a result of the full amount of nutrition he has been able to take for the past 9 days. I also thanked him for the help in providing the oxygen concentrator and the home nebuliser as that has made a huge difference to Peter's level of comfort both physically and psychologically. Dr Pacl would like to remove the syringe driver but Peter is resistant as it has been the only medication that has really helped him to remove the pain in the past year or so. A compromise has been reached that we will move off the syringe driver over the next few weeks so that Peter has time to process that change and Dr Pacl would like to re-institute the skin patches. Peter's resistance to them is that they didn't work for him and Dr Pacl reassured him that the doses he was on were too low and now we know what works (ie. the hydromorphone) he can work out an equivalent patch dosage that should be effective as well as easier to apply. It would mean we wouldn't need the nurses to visit on a daily basis. But I think Peter feels a sense of comfort that they do come each day to help deal with the daily issues.

For example yesterday the peg feed tube blocked when I was giving the last of the morning medications. Usually if that happens I leave it for 1/2 hour and then give it another attempt. However, after 4 hours I couldn't unblock it. With the help of Joan in the Pall care team, I tried Coca Cola (which apparently is a whizz for unblocking all types of gastric tubes) but I couldn't get any of it in for it to do its work and trying to suck the blockage out didn't work. Anyway, after further consultation with some community nurse specialist and further instructions, Inge (Pall care nurse) was able to unscrew various parts of the tube and clear the blockage with a smaller sized syringe and bicarbonate of soda and water. So now it works smoothly but it was a worrying few hours as we would have had to go to the Emergency department of Canberra Hospital and possibly have had the tube removed and a new one replaced. This was something I definitely did not want to have to do unless totally necessary as I knew that it would not only exhaust and trumatise Peter but he would then not trust me to administer the medications again for fear of what might happen. So finally after the 4 hours all was well and the afternoon and night feeds have gone well.

Anyway, Dr Pacl also talked through some of Peter's fears that have been concerning him. One of which is about suffocating. Dr Pacl discussed with him why his situation is different, medically, to that of Peter's father and how he wouldn't have the same situation occur because his condition is different and things would manifest themselves differently. I thought he did it with great care and openness and that it gave Peter some food for thought as well, perhaps, as some comfort that the fear of suffocating may be only a fear and not the future.

Other news is that there is currently no infection at the Peg tube site, syringe driver is working well, Pic line is clean and okay and I think we have the bowel and bottom side of things under control. My cunning plan for the spenko (wool filled over-mattress) has worked and since Sunday afternoon I have had Peter using it and it is more comfortable. I have laid a big beach towel over it to act as insulation and absorption and a nice fluffy cotton flannelette sheet over the top. So I am using a combination of different sorts of blanket (cotton, mohair or wool quilt) and hot water bottles to get the temperature under control and it seems we have minimised the sweating as a result.

This morning Peter has announced that he will try to put on clothes (rather than pyjamas) and see if he can get up for a little while. This is as a result of Dr Pacl's positive intervention yesterday I think. We need to bottle this doctor as he is a rare and excellent person.

Peter also had 2 visits this week - one from a friend who came over from Perth. Unfortunately Peter was only able to spend about 10 minutes and a further 5 minutes with Stephen. But I know he was touched that he would come all this way to spend some time with Peter. Also a lovely visit from 2 other friends on Sunday afternoon. It may have done me more good than Peter to see both sets of people, but I think there were positive signs for Peter as well. So I am hopeful of introducing some other people back into seeing Peter (those without infections or illness of course as his bloods are still quite low after the chemotherapy etc) over the next week or so, even if only for 10 minutes or so.

Anyway, that's all for now. I will write when I have more news. Cheers - Leanne

Sunday 13 July

2008-07-13T09:05:00.002+10:00

Not a great deal to report since Wednesday - just lots of incremental physical/medical things.

We saw the GP on Friday and he wants to visit Peter at home on a weekly basis. Apparently he feels side-lined when Palliative care services and hospital doctors take over - a bit of a turf war it seems. However, part of me is a bit peeved about that, as Peter has consistently had to be the one to press the GP for referrals and other opinions over the past 4 years as he has missed almost everything of relevance since Peter's diagnosis in 2004 and there has been really nothing that I can think of in the way of proactive assistance.

Still it will be useful for us in the sense that if we need prescriptions etc we will be able to get them more readily and I won't have to cart Peter to the surgery, as he has said he will come to us. Now that does surprise me as they closed their Saturday morning clinic several years ago and I was surprised when I asked if they did home visits to be told they do. That's something we have never been offered and to be frank is something I didn't think they would offer, so didn't ask in the past. Another lesson learnt!

Anyway, Peter's blood test results showed he is still low in salt, protein and albumin (these latter two are due to the malnourishment and should pick up as the full feeds start to take effect). He is high in glucose and urea (the latter one due to not enough fluids, although he is getting almost 3 litres a day with the liquid feeds, so I just have to give him more water through the peg feed tube). As you would expect he is all over the place on the blood count variables - due to the chemo and radiotherapy and these are expected to readjust over the coming weeks.

We also had the community dietitian visit us on Thursday afternoon. Basically it was to go through Peter's history and check that I was comfortable with the regime, understood it and was able to have the initiative to modify things as circumstances arose. One good suggestion was the addition of a soluble fibre supplement, as well as the extra salt I already include, to the peg feeds or flushes, called Benefiber (yes, it is American and hence the different spelling). The minimum adult dose is 2 teaspoons, twice a day in 1/2 cup of fluid. I started yesterday with one dose and will add more today to get to the minimum and see how he is tolerating it. This will, hopefully, assist with bowel movements which have to be urged along with other medications if they are not forthcoming on a daily basis.

So, it is an interesting balancing act to get the right vitamins, minerals and other nutrient requirements into Peter at the moment. Just goes to show how much easier it is if you are able to eat and have a well balanced diet - the moment something goes out of alignment the knock-on effects can be very problematic (for example the seizures Peter had in hospital due to the low calcium levels).

We have had the okay to cease one drug, which helps with nausea and mood etc but can add to grogginess and foggy cognitive function and I can already notice a slight improvement in how Peter responds - just in 36 hours.

Battles still to be overcome/prevented apart from the above are: lungs and breathing (hopefully no further infection there and keeping airways clear); pressure areas (he is so thin that it is something of which I have to be aware); infection at the Peg site (we finished the antibiotics on Monday but there was a lot of yellow discharge there again yesterday) . We really have to keep that in tip top order as it is his only life line now for feeding.

I am hoping he will finally agree to me using the "spenko mattress" which we have on loan from the hospital - it is filled with wool and is a soft addition to put on top of your ordinary mattress. However, Peter hates the vinyl covering as he feels it contributes to his sweating, so I will have to devise a cunning plan to provide some absorbent layers on top, without deflating the loft of the mattress and hope that provides some assistance in the short term.)

Nothing else to report except we are both looking forward to Dr Pacl's visit on Tuesday for another review of pain medication etc. I'm not sure if I mentioned that Dr Pacl is going to keep Peter on as his community outpatient although he is moving to work in the hospitals from this month. This is a great thing for Peter and we are both really touched that he would keep us on (at the urging of one of our lovely Pall care nurses, I think).

I am fine and getting the routines under control. It certainly is a full time job - all hours of the day and night, but I can often get a couple of hours in the afternoon to read or catch up on sleep, emails etc which is positive.

For those of you asking about my mother. She started radiotherapy (30 or 35 treatments) on Tuesday at Nepean Hospital and these will go on for 6 or 7 weeks. I understand from my sister that it was an adenocarcinoma and there was only 0.5 millmetre from the tumour at one part of the site and they couldn't take any more from there. So I am concerned as this was exactly the same for Peter, (both the adenocarcinoma and the size of the buffer zone). I only hope this one can be treated more readily and responds well as I would hate for my poor mum to go through what Peter has had to deal with. Luckily, my exceptionally competent sister, Narelle, who is the scientist in the family, has been marvellous in being the advocate and transport for my parents and will continue to do so.

Anyway, that's all from me for now. Until next time - au revoir. Leanne

Progress at home - Wednesday 9th July 08

2008-07-09T13:31:00.002+10:00

Peter finished his radiotherapy yesterday morning and we are pleased that there are no further sessions to attend at the moment.

So we are starting to get into the routine of care again and are working out the best patterns for feeding etc. The dietitian agreed yesterday that we could increase the feeds to approximately 2 litres of Ensure Plus which provides about 2,800-3000 calories a day. On this regime Peter should be not only able to maintain his weight but hopefully increase. He has remained stable at 66. 7 kilos now for a week and my aim is to try to add a minimum of 10 to 15 kilos to get him back to what he was in early May, if the disease will let me. So I now start the pump feeds between 1 and 2 pm and they run through to 6 or 7am the next morning to deliver the 2 litres at between 100 and 125 mls an hour. My thoughts are that if we can increase his nutrition then he may feel a little better and his cognitive cloudiness will clear. Well, that's my theory anyway.

As you would expect in this situation Peter remains very depressed and sleeps or rests most of the time. The palliative care nurse feels pretty certain that the loss of function in the right arm and hand is nerve related and also we have noticed his voice is fading again - also most likely due to the nerve. We will hopefully see Dr Pacl again early next week for a comprehensive overview and also have appointments booked with the GP on Friday and the specialists (oncologists) for later in the month.

I couldn't believe tiny flakes of snow were falling for 1/4 hour at our place this morning at about 9.15am and the grey, overcast day, with low clouds over the hills in Tuggeranong. It reminded me of some of the European mountain villages Peter and I have visited in the past. It hasn't happened before (although some northern Canberra suburbs have had occasional snow showers over the past decade) since we moved here in 1995. Re the travel, as Peter says, "Thank goodness I didn't put off travel until I retired. How short-changed I would have felt!" Moral of the story, to reprise that famous saying - "Don't put off until tomorrow what you can (or want to) do today" and especially where travel is concerned.

Au revoir - Leanne

Peter has been discharged from hospital - 5 July 08

2008-07-05T17:28:00.002+10:00

After finally getting the necessary equipment to enable overnight feeding to be done at home, Peter was discharged from hospital on Friday 4 July. He has now been home about 28 hours and we are starting to get back into the routine of daily care.

The first 1/2 of the day is intensely busy- starting from about 7 or 7.30am and it is flat out until at least 10.15am - the overnight feeding tube has to be removed, flushed with water then 7 medications are given individually crushed and with plain water flushing in between; then comes the shower and dressing and another feed through a syringe at 10am. In between I fit in my breakfast and shower and then we are ready to face the day. The palliative care or community nurses attend at around 11.30 and on the days when all the dressings need to be changed they are often here for 1 to 1 and 1/2 hours. I have lunch, then another feed at 2.00pm with a 3 and 1/2 hour break until 5.30pm, when I get the next range of medications ready and then hook up the tube feeds at 6.00pm and then the next one at 10.00pm which runs through the night. So that's enough to get me into bed soon after the overnight feed tube is running. Then I wake to get Peter oxygen or the neubuliser if he needs it and to help him go to the toilet as the feed pole (like an IV drip pole) needs to be moved into the ensuite and I am concerned he may trip.

So far Peter has had 10 of his 12 radiotherapy treatments with the last 2 on Monday and Tuesday this coming week. After that the plan is that he will have bloods taken at the end of the week and be reviewed in 3 or 4 weeks by Dr Yip and Dr Austen, the 2 oncologists.

On Thursday evening, Peter asked Dr Yip what the plan was and how he would know if he was improving or how he would measure the progress to the outcome (whatever that might be) - always the "project manager". Dr Yip said that the aim of this treatment is to make Peter comfortable and to try to allow him to have more capacity to swallow, so the relative success is whether he can start to take soft foods at some future stage.

Peter also asked what the prognosis was - "Do I have 1 month, 5 months or 15 months?". Dr Yip said that he didn't know as Peter's tumours hadn't really behaved like others of this type and he hadn't thought he would necessarily last this long, but that it wouldn't be 15 months. This knocked us both for 6 all over again as we have constantly seen, over the 4 years, some small signs of improvement and he has come back from being this low before.

So we are both feeling very low. It's hard to hear that there is little hope of anything except making things as comfortable for Peter as possible. Peter has said to me today: "There's no way back from this and I am sorry." He is feeling like there's little hope now and yet he and I both desperately want a cure and for him to return to normal. While it's been important for us to know the reality, it's hard to hear it and do anything with it apart from feeling depressed and tearful once more in response to it.

Peter has been spending most of his time sleeping and is very physically weak so there really isn't much that he is able to do except lie in bed or sit in the recliner chair. The "quality of life" that the treatment will give him really relates to his swallowing and keeping the cancer at bay for a while - both of us are unsure whether he will be able to reclaim some semblance of independent functioning but I keep hoping.

Thanks for the emails, SMS messages and phone calls. For those of you wondering, the best times to call are between 8.30am and 8.30pm (Australian Eastern Standard Time). We had a nice call from Peter's cousin, Andrew, in New York this morning, which was really wonderful and very welcome, but receiving it at 4.50am was a bit difficult. If we are here I'll be happy to talk and if it's not a good time, I'll let you know and call back another time. I'll write again in the middle of the coming week and let you know how we are getting along. Cheers for now -

Wednesday 2 July 2008

2008-07-02T08:58:00.002+10:00

Peter is not yet home from hospital. The doctor and dietitian think he can come home but Peter is concerned that if he comes home he will not cope or I will not cope. So while I said "yes I can manage him at home" Peter said "no".

He had a fall on Saturday morning at 7.30am before I arrived for the day and that has shaken his confidence once more. Luckily he only sustained some bruising on his back at the lower ribs and the nursing staff heard the "thud" so came immediately to his assistance. But that means he now really wants someone to walk with him to the toilet etc to ensure he doesn't fall again. The reason for the fall, I understand from Peter, is his weakened and deconditioned state, which made him tottery on his legs and made him keel over.

Anyway, the peg tube feeds continue to go well although he has not gained any weight from them. So the dietitian has decided we can try to increase the overnight feed amount from 1 litre to 1.5 litres over a 12 hour period and review that. This increased regimen will commence when he comes home, which I think will be before the end of the week, as long as I can get all the equipment and supplies for the feeds at home.

The plan then is that he will not have any further treatment for the short term and in one month will see Dr Yip again for review, at which time blood tests will be considered. According to Dr Yip and others, the radiotherapy (which continues until 8 July) will take some weeks to months to finally work its way through and finish. At that time they are hoping it will have had a shrinking effect on the oesophageal tumour.

Generally, Peter is not in a good way psychologically at the moment as he cannot see any improvement and he says he is frustrated and I consider he is depressed. He has no interest in anything and is depressed that he is not able to eat or drink anything. He can actually swallow fluids but the problem is that every time he does so it means he brings up a lot of mucous and coughs which exhausts him (but is probably an important thing to do) and so he can't see the point in drinking to then have 5 minutes of exhausting coughing.

I am continuing to shower, clothe, feed, often administer the medication by the tube and attend his needs while he is in hospital. This makes him feel confident I will be able to manage at home and he can see that relatively speaking I am able to do a competent job, which is important. So I think we will manage reasonably well at home especially with the assistance of the palliative and community nurses to change his sterile dressings and pain medication.

Meanwhile I am fine and looking forward to having Peter home again as it is easier to be at home than at the hospital all day. Best wishes to you all. Cheers - Leanne

Saturday 28 June 2008

2008-06-28T08:14:00.002+10:00

Peter has remained in hospital all this week and while the doctor is aiming for his discharge on Monday I am not so sure it will be then. Peter has continued with the Cisplatin and 5FU chemotherapy this week for 5 days through a pump into his Pic line in his arm and he has also commenced radiotherapy and had 5 of the 12 sessions to date. While he has not been as nauseated this time as he was from the last bout of chemotherapy he said yesterday he feel flat and low and is thinking he can't go on. I think that within a week or two some of the nausea and depression may well lift a little as he begins to eliminate the toxins from his system. He currently has a low sodium level and so the IV drip has had to come off and salt added to his tube feeds to try to rectify that. He also has an infection at the Peg tube site and so is now on antibiotics too. The human body is so complex that everything is linked to everything else and one thing out of synch leads to so many other issues.

We have successfully commenced overnight feeding through the Peg tube into his duodenum with a pump and he is now having the 1 litre infused overnight with 2 smaller feeds through the tube during the day. So with that nutrition going in now on a regular basis I think Peter will start to look a little better and start to feel a bit better gradually as well.

I have been at the hospital showering, dressing and administering the extra feeds as well as keeping an eye on the dressing changes and medications as there is a bit of laxness from time to time and things don't get done when you necessarily want them done. I also learnt to do the overnight feeds through the pump so I can do them when he comes home. We are being loaned a special pump to do the feeds and I was keen to use it under nursing supervision before being at home wondering what goes where etc.

This week I managed to take a quick drive up to Sydney to see my mother who has just had a tumour removed from her salivary gland and will now undertake 30 sessions of radiotherapy. I hadn't seen her for more than 6 weeks and so I was glad that Peter was in hospital so I could take the quick trip and be back within 24 hours. Luckily I have an excellently competent sister who is accompanying mum and dad to the specialists etc, in between work and family.

So as for next week, I am hopeful we will see some gradual decreasing of the impacts of the chemotherapy, while the radiotherapy is still continuing. After that, I am unsure as I am not sure how many cycles of the chemotherapy Dr Yip considers appropriate. So I will wait to hear about that next week.

Until then, take care everyone and remember - don't smoke, eat plenty of fruit and vegetables and don't get fat!!! Cheers - Leanne

Monday 23 June 2008

2008-06-23T20:33:00.002+10:00

A hugely busy and tiring day today. Up early and after 2 hours and 45 minutes of feeding Peter and myself, showering Peter and myself, organising a 2nd feed and medications, loading up the car and packing his hospital bag with medications etc we got to the hospital. I know that those of you who have had babies know all about this and so it is not new but it is new for us to have to have one of us do everything for the other.

Anyway, Peter spent up to 3.30pm today getting his next round of chemotherapy, Peg tube wound attended to along with bloods taken etc before being admitted to the National Capital Private Hospital and then having a consultation with the dietitian, another with the registrar, being wheeled across to the Canberra Hospital for radiotherapy at 5pm and then having to be hooked up to drips, have meds injected through the Peg and have a 1 litre bottle of Ensure ("complete food") hooked up for a 12 hour "feed" through the tube. So at 8pm I decided all was well for the night and headed home.

As per the previous blog entries, Pete is scheduled to be in for around 5 days and then will come home and I will need to take him into radiotherapy for another 2 weeks after that. So far he has regained a little cheer at the fact the dietitian has agreed to try him out on higher amounts of tube feeding. I have to say both Peter and I were keen to see if more was possible as he has been loosing condition faster than a speeding bullet and over the past 2 days I have had to help shower him again as he can stand but not do anything much to contribute to the exercise and of course I have to towel him dry and dress him.

I am very hopeful he can cope with the increased feeds and it doesn't put too much adverse pressure on his system as he is now eating nothing - with only an occasional apple juice or broth.

Anyway, stay tuned for the next episode. I can say that on past performance, by tomorrow afternoon or Wednesday morning he will probably be feeling appalling from the effects of the chemotherapy. At least he doesn't have to try to cope with swallowing anything or eating now if the tube feeding works out.

Au revoir - Leanne.

Saturday 21 June 2008

2008-06-21T22:15:00.002+10:00

Saturday 21 June 2008

I am having a go at writing a few lines of my own again to this blog. It is not that I I am unappreciative of the work that Leanne is putting in the opposite in fact. By staring at a screen of data and then trying to emulate the erudite and witty contents I realise how much effort this now requires what with muscles that I actually tried to look up the other day doing a translation from a text book and a mirror image of what I was seeing. It is truly frightening when the differences are in seeing more puny musculature in the mirror image and NOT the text book.

I have not dared to step onto a set of scales but would not be surprised if the weight is down to the 50 -55 kilo range. For those of you who have known me - think abut it - that was usually the size of the conference papers an then there were the working papers and clothes PLUS the bulk of the attendee.

I notice that Leanne waxes lyrical abut those attending to to our needs here at home and I have to say I am empathic to this. However let us not forget those who work at the hospital directly and actually have the permissions to make the visits there as well. These doctors share rounds and patients and are equally dazzling and legendary a fact that they will have to prove again I suspect when the places into which subcut needles can be placed with which a syringe driver can be used. What IS truly amazing is what takes place in the home - I mean seriously folks whatever your fantasies about a former public servant it should not extend to the notion that without attending work there is an income stream available to pay for incurred bills for treattment. Medical supplies are not cheap. Take a few of the 'essentials Leanne has referred to:

a walker,
a wheel chair,
an oxyen concentrator,
a shower chair,
a high back motorized chair to get you into and out of positions of comfort;
wedge for the bed to emulate a hosptial elecrtonic bed;
the real thing if you need one,
pic line;
peg tube;
Injector;
not to mention the costs of visits for the personnel to use all this stuff stuff professionally in your own home and of course their costs (transport etc) as well as medication

If you want to horrify yourself check out prices and costs at Weston creek at the Independent Living Centre - don;t bother with the smalls just check the bigger ticket items only

Then ask your self how ANYONE can afford all this?

The reality is different your Doctor's fees and the medications are a little like death and taxes, there to be paid - and if you have been clever enough to DIRGREGARD the propaganda and take out private health insurance cover when you were in receipt of an income you're laughing now as bills are turned over to them and magic happens - they get paid by the insurance company and you are no worse off.

Explore then the unreal world of leasing the equipment as distinct from BUYING it. The costs will surprise you. They completely left me high and dry with admiration. THEN when you contemplate the overall service and its connectivity if will leave you with a sense of resolve to preserve all that you find intact as you have found it (minimalist position) or ADD value where you can find some (eg donations of your own) or Opimal value position where (assuming you get the chance) you volunteer YOUR TIME to the cause.

Not many things bring grown men to cry but these services up there with the better motivators.

Friday Evening 20 June 2008

2008-06-20T16:37:00.002+10:00

Well the house has been like Pitt Street over the past few days - more visitors than ever before and all due to the helpfulness and resources of the Palliative Home Based Community Care team.

We have had visits from the OT, the pain specialist Dr Pacl (again this man is a legend - so professional yet so caring and engaged with Peter) and the palliative and community nurses (Joan and Colleen in particular are very good with all of Peter's treatments) ; also as a result of Dr Pacl's visit we have had an oxygen concentrator machine delivered to help Peter get some oxygen when needed, a nebuliser to assist in loosening up the bronchial area, and some extra medications to assist. The house is being slowly transformed into a quasi-clinic with all the equipment as the dining room and spare room are filled with aids, equipment and medications. We have also had the first delivery of 48 tins of complete nutritional food preparation "Ensure+"

I've also had contact with a volunteer who will come to sit with Peter for 4 hours per week and we will probably start this once he comes home from hospital in a week or so. As well as that a massage therapist has been in contact and again we will see how he is on release from hospital before booking this service. These are all free and courtesy of the Palliative Care team and the ACT government. How amazing is that!! What a wonderful service - it's truly fabulous and we are both very overwhelmed.

As far as the success of the syringe feeding and the Peg tube - Peter had 2 very painful and uncomfortable nights from the site of the surgery for the Peg tube and we had one less than successful feeding situation which was as a result of the water I used from the tap to flush his tube being too cold. The dietitian said to use tap water and I did but clearly tap water at 5pm in Canberra in winter is not the optimal temperature to inject straight into the duodenum so Peter had a very uncomfortable couple of hours where he broke out into cold sweats and was in cramped pain. I felt terrible and so thought it could only be 1 of 2 things - either the speed with which I had injected the fluid or the temperature of the water and given that the discomfort started immediately following the water flush and I wasn't really rushing it, I realised it had to be the temperature. So I administered a hotwater bottle and after an hour or so it settled down but it is not a good feeling to know that you have, however inadvertently, caused the pain and discomfort of a loved one. So now I zap everything in the microwave for 10 or 20 seconds depending on volume and that makes it tepid or lukewarm which has meant no further problems.

We are still on a mingy 2 cans a day of the fluid (1/3 of the normal dietary requirement) but the dietitian has explained that to give more until the blood tests are taken next week and he is checked for his toleration of the formula, would be unwise to try to increase the intake as the body in starvation mode breaks down and utilises fats and muscle and to increase intake could be detrimental to stopping that breakdown. So it's slow and frustrating as each day Peter is drinking and eating less and so is losing more and more condition. Today, he was very weak in the shower and I had to help him whereas he was improving before the Peg tube but finding it difficult to swallow food and drink. Now the Peg tube is inserted and takes the pressure of the eating and drinking but he is losing strength as he is not able to increase his nutritional intake. I worry that he may starve to death before we get back to the right nutritional intake.

So that's it for now. Peter has to be admitted to the National Capital Private Hospital on Monday for chemotherapy and radiotherapy at Canberra Hospital. I know both of us are not looking forward to that given the toxicity of the chemicals and how totally sick they make him, but we continue to look for the ray of hope that will mean we have been able to "buy" another few months.

Cheers for now - Leanne