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.