Eulogy

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

Memorial and Preparation

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

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

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

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

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

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

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

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

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"

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

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

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

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

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

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

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

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

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

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

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.

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.

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.

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

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

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

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

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

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

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....

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:

1. deal with unfinished business
2. say and give opportunities to others to say their good byes
3. 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;
4. 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

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