A Cancer Diary

2010-08-01 — It’s been a long time

2010-08-01T11:05:00.002+02:00

Dear All

It has been a very long time since I last sent one of these broadcast newsletters. Some of you are up to date with my news and others are not and I’m sorry for having been so disorganised over this.

I’m afraid the news is not all that good. I was delighted in January when I passed another one of the check-ups on my lungs. I was really starting to think that the chemo-therapy had really worked. The doctors were optimistic too and increased the interval between check-ups from three months to five months. I even taught a course at Webster University in the Fall.

In April and May I started having a lot of pain from my ribs. Checks were made and little found. I get hay fever in the Spring and that causes me to cough a lot and it seemed that this violent coughing had done some damage to the area of my ribs — this actually did happen some years back and so we all thought this was just a reoccurrence. But it turned out not to be the case.

My check up in June showed real problems. The cancer had reappeared in both my lungs and had also spread to my ribs on the left side (this explains the pain). So now I have a reoccurrence of the lung cancer and also bone cancer. This cannot be operated on so the doctors are doing another round of chemo-therapy.

My oncologist when I pressed him for an honest forecast said that things were by no means hopeless, but it looked likely that my cancer would never be actually cured but would rather be regularly kept at bay with treatment — presumably with chemo-therapy.

Anyway I am now undergoing chemo-therapy — I have had three sessions (each involves three days; that is two nights in hospital) and have another five sessions to go. The sessions happen every two weeks so this will go on until early October.

I had some bad after effects at first and was further ‘disabled’ by the horrendous hot weather we had in Vienna for a while, but now am handling things pretty well and am enjoying life once more — though it is a somewhat less active life than before at the moment.

Margaret (my ex-wife) has been having problems too. She had to have a long course of daily radiation therapy and it is still unclear whether this has worked or not. Her doctors seem to be a bit confused and this is very disturbing. However there has been no actual bad news and there is hope that the doctors will soon come up with an opinion — preferably an optimistic one.

Both Margaret and I have been so pleased that Sarah and her fiancé Ben moved to Vienna a year or so ago. It is so good that both are now settled happily in Vienna and that our family is re-united in one city.

I wish you all the best and am sorry that I have been irregular and inconsistent in keeping in touch with many of you.

David

2009-12-21 — Xmas Letter

2009-12-21T10:38:00.001+01:00

Dear All

I wish I could say that I was not sending proper Xmas cards this year as a gesture to the environment (saving trees and all) but the sordid truth is that I just didn't get round to it. So instead I'm sending this email greetings 'card' to everyone whose email I could find!

I would like to wish you all a happy festive season and all the best for 2010. Many thanks to all of you who have helped and supported me over the year. I may be a bit tardy on replying, but believe me your good wishes have meant much to me.

Our family is re-united in Vienna - after around 9 years in England Sarah moved back to Vienna bringing her fiancé Ben with her. Ben looks to be an ideal son-in-law - certainly a respectful one - he asked me for permission to ask for Sarah's hand in marriage before asking her - so he and I have had a good start. Both of them have jobs in Vienna and have a super flat close to the city centre. The family is being hosted for Christmas dinner at Sarah and Ben's on Friday - which we're looking forward to.

Chris has been to Australia for a long holiday but now is back with a new contract at the IAEA -he is joined at the UN by Sarah - both following their parent's examples.

Healthwise I am doing well - the last round of chemo seems to have worked though it is still early days to be completely sure. Margaret is having to carry on with chemo but is in good spirits. The sad news this year was that Liz, Margaret's twin sister, lost her battle with cancer and passed away in the autumn. She is missed, especially at Christmas.

I have two small cats as flat mates now - Thelma and Louise - Thelma has been trying to help me type this email, all typing mistakes are due to her paws. The two spend half their time running over, under, around and behind everything, unplugging cables and generally indulging in high energy mayhem. The other half of the time they are fast asleep behind the books on the bookshelves where they can be undetected and undisturbed. They are fun but do tire me out sometimes!

I hope you and those close to you are well, and once again I wish you all the best for the upcoming holidays

David

2009-10-08 — Catching up and Good News, and Sad News

2009-10-08T12:11:00.002+02:00

Dear All

It's been a long time since I last sent one of these broadcast emails. The last one was just after the first of the six sessions of my second round of chemo-therapy; back at the end of April.

A number of you are up to date with what happened and with the good news I got this week — you can switch off now — but to some of you I have been remiss in writing too (I apologise for that) and you can read on if you want to.

The chemo-therapy was a bit rougher than the first round, perhaps in part because it came directly after the two lung operations. I had a lot of different side-effects, not all at the same time though, but there was nothing I couldn't manage. I didn't lose my hair this time which greatly pleased me.

The worst problem was a massive attack of lethargy. I lost most of my energy; both mental and physical. Physical wasn't such a great problem as I've never really been one for the energetic life, but I disliked the inability to concentrate on anything. Spent a lot of time re-watching old videos during the day and sleeping twelve, or even more, hours at night.

Anyway the chemo-therapy came to an end and about six weeks later (so at he beginning of August) I suddenly perked up. Everything came back. I was able to rush up stairs and spend long hours doing reasonably serious work on the computer. It was such a welcome change.

And then this week I went back to hospital for a check-up. They did scans of just about everywhere (I am still trying to get my hands on the picture of my whole skeleton) and took at least an armful of blood for testing. This was on Monday. Then on Tuesday the Professor came into my room with a big smile on his face and said "I think you can guess the news from my smile". Anyway there has been no recurrence of the cancer. Not in my mouth or neck, and more importantly now, not in my lungs. While I still need to have checkups on a regular basis and still there is no absolute guarantee this has nevertheless increased my chances hugely.

Such a difference from the check-up at the beginning of the year when the news was all bad. I've been putting on weight too and am now out of the anorexic level. Crossed the 60 kilos mark a couple of weeks ago and feel much healthier.

And what does it mean to me? Well I have this feeling of being able to get on with my life. I shall be teaching a class at Webster University here starting in a couple of weeks and that will take me up to Xmas and will also refill the coffers a bit. I'll also be investigating what surgical possibilities there are for correcting the mouth problems I have so that I can perhaps get off the yogurt only diet and perhaps be able to pronounce the letters "G" and "K" (one of the worst words for me is "Google" but there are many other similar obstacles).

And now the other news; not such good news I'm afraid. Margaret is in a bit of a limbo situation — an ultra-sonic scan showed new problems in her neck area but the doctors doubt whether what the scans show is serious. She will have an MR scan in a week or so to clarify the position.

And the really bad news was concerning Liz, Margaret's twin sister. She had a cancer of the oesophagus which was not able to be treated and she died a month ago. I had not seen much of her for quite a few years and was somewhat surprised at how much this loss disturbed me. But the whole family had always got together at Christmas and earlier, before we both retired, I saw a lot of her at work and she was always a 'feature on the landscape'. The English community here in Vienna is small and nobody is ever that far from anyone else. She will be missed.

Many thanks to you all for your support over the last few months — I'm sorry that I didn't always find the energy to keep in touch with some of you.

Love to all

David

2009-04-27 to 2009-04-29 — Antibody and chemo treatment #1

2009-04-29T19:57:00.004+02:00

This is a slightly more technical version of the last entry — I didn't want too bore everyone on the email list in an email with some of this stuff.

These three days (two nights) in hospital for the antibody and chemo treatment were the first of six sessions which are planned to be done at two-weekly intervals.

It all went well; there were no immediate side effects which is good. I was warned not to drink beer straight from the fridge as very occasionally this can cause severe throat swelling. As I don't drink alcohol any more I was able to tell them there would be no problem.

The advice was then extended to cover any carbonated cold drinks but again these are things I've not been able to drink since the mouth operation, so again no problem.

I've been put on an antibiotic course to cover any other known possible after effects and I'll be taking that for a few weeks apparently. It's apparently something normally given to babies — what with possible spotty complexion does this all mean I'm entering a second childhood?

Provided that my bone marrow regenerates enough platelets (red blood cells, I think) then the oncologist thinks it will all go well. I might get spotty (and have some creams in case this happens) but he doesn't expect my hair to fall out again — which is lucky as I have an appointment at the hairdresser tomorrow and that's be a waste of time and money if all that is left after my new coiffure promptly falls out.

The main reason the treatment is done in hospital and takes three days (two nights) is one of the components of the chemo part is administered with a machine that runs continuously for 48 hours. It's a really cool device — like a large calculator with a strap that goes round my waist or slung over my shoulder. The liquid is enclosed completely in the device so it is really compact and convenient.

Of course nothing is perfect so there were plenty of other normal drips attached for all of the time —- especially on the second day. The actual antibody (antibodies? anti-bodys? — who knows?) is (or are) administered on the second day by conventional drip feed but there are loads of other drip sessions with things to add vitamins, things to protect my stomach and so on. I asked for photocopy of the three day's schedule but then went and forgot to pick it up when I left — so I have no real idea of what was put into me.

This morning, whilst still in the hospital I made a spreadsheet list of all the hospital stays over this whole cancer period. I had to wait until I got home to fill in all the dates involved and might produce a graph or something sometime, but in the meantime only little data factoid for you:

It has been 617 days since the first stay in a hospital (August 21st, 2007 for my mouth tattoo)
Since then I have spent 145 days and 128 nights in hospital (23.5% and 20.7% respectively)
Depending on whether you count days or nights that somewhere around a fifth to a quarter of my life in a that period
Some say I'm a computer nerd for doing this sort of thing?

Enough! Will go and watch something light-hearted on DVD

2009-04-29 — Newsletter — Antibodies and chemo

2009-04-29T19:41:00.001+02:00

Dear All

This is just a short note to let you know that I returned today from two nights in hospital for the antibody and chemo treatment — the first of six sessions which are planned to be done at two-weekly intervals.

The stay was quite pleasant as on the Monday (I think by coincidence) I regained my 'full mental capabilities' — until then I'd been a bit lethargic after the second lung operation. I felt good and still do back home.

One great help is that they gave me a different pain killer which is much better than the previous one, and so I am not much troubled by the aches and pains from the operations and the nights are also much easier. Last night I slept untroubled for almost the whole night —interrupted only by just one short 'pit stop' break. Definitely the best night in the last few weeks.

I've been put on an antibiotic course to cover any other known possible after effects and I'll be taking that for a few weeks apparently. It's apparently something normally given to babies — what with possible side effect being a spotty complexion does this all mean I'm entering a second childhood?

I was also warned to avoid cold beer and carbonated drinks — things I don't indulge myself nowadays so this is not any restriction.

I have lots of energy right now, and think I might start another spring cleaning bout tomorrow — then again I might just relax and play on the computer for a day or two.

And the other good news is that I am very unlikely to have my hair fall out this time as the chemo component is much weaker than the last series.

Thanks as always for your emails, phone call, visits and prayers

David

2009-04-16 — and home again

2009-04-16T16:04:00.003+02:00

Dear All

Well the operation went off well and this morning I got back home. I had to stay a little longer in hospital (10 days) than the last two times for this one as they thought it was rather soon after the previous one and I would need a little longer to recover.

Well, they were right. It was a lot more uncomfortable as it was, and still is really, difficult to find a position to be comfortable in. The other side is still sore (looks and feels bruised) and so I can only lie on my back.

But now I'm home and feeling a lot more comfortable physically and very much better mentally and spiritually. The day after the operation I felt pretty low but that only lasted a few hours.

And the good news is… the surgeon removed five suspicious 'things' and only one was malignant. So there has not been a massive new outbreak — just a small localised one. Both the surgeon and my oncologist are very optimistic about this.

For the future, I start a new course of treatment soon. Antibodies (a bit complicated to explain, but new and there is a lot of hope from it — Margaret is already receiving this) coupled with a milder chemo than last time. It will involve two nights in hospital every two weeks for a total period of three months. So I start on Monday the 27th and it'll go on until about the end of July.

Thank you all for your emails, phone calls, visits and also for your thoughts and prayers. I am lucky to have so many good friends.

Love

David

PS Did not get my skeleton picture even though the surgeon promised to try to find it. Will have to try another approach.

2009-04-01 — And yet another operation

2009-04-01T15:44:00.000+02:00

Dear All

Went today to have the stitches taken out and was feeling pretty good physically. Turns out however that they discovered two more small 'things' on the other lung -- they actually found out the day before the operation but thought I'd recover better in ignorance. So now the whole process has to be repeated but on the other lung.

So on Tuesday next week (it seemed a good idea to get it over with) I'll be back in hospital and operated on that afternoon. Should be about a week in hospital as per last time.

Anyway, despite all this my spirits are high and I'm going to enjoy the next 5 days as much as possible!

love to you all

David

PS the surgeon has promised to try to get me the full body scan picture they did last time (shows my skeleton) as I said I wanted to put it on my web site. If that works out you'll all get to see the real inner me!

2009-03-23 — News about Margaret

2009-03-23T18:42:00.001+01:00

By one of those strange coincidences that seem to happen quite often, my ex-wife Margaret has also had a mouth tumour and I've put some stuff about that on this blog.—mostly 'newsletters' that our son Chris and sometimes I have sent out on her case. This below was the latest newsletter to her friends following some very recent developments.

Dear All

I'm sorry to have to tell you all this news, but Margaret had some routine 'control' checks this afternoon and although the lung x-ray proved fine, the ultra-sound scan of her throat area did not. While the person doing the scan won't commit to a definite diagnosis there are definitely new problem lymph nodes -- ones that will have to be investigated further, probably by an MR scan. The person doing the scan is the same one who correctly spotted the last re-occurrence so it is likely that he is correct in thinking there is a new problem.

The new problem areas are under her chin and on the other side of her throat (the opposite side to the last problem area).

Margaret is understandably feeling down about this and that is certainly to be expected, coming as it does right in the middle of her chemo treatment.

She does not want to talk much right now, but if you text her (0664 xxxxxxx) she will certainly reply when she has recovered from this initial shock.

Of course there is a lot to investigate, and probably another operation but while this is upsetting to say the least, nevertheless there are certainly many options left open -- it is probably the uncertainty that is one of the worst things

Your thoughts and prayers would be welcome, for Margaret of course, but perhaps also for Chris and Sarah who have been subjected to a lot of horrible worries from both their parents over the last couple of years.

Best regards to you all

David

2009-03-21 — Tumour news: All going well, home on Monday

2009-03-21T09:29:00.000+01:00

Dear All

First of all thanks to all of you who emailed, texted or phoned me -- it is a great help to know I have so many friends wishing me well.

Things are going well. After two days of tests and scans I had the operation late Tuesday afternoon. It apparently went well (I was asleep during it so cannot confirm that) and I spent a comfortable night in the recovery station. There was a 85 year old lady in the bed next to me (separated by a screen) who was complaining very loudly all night that they had her in the wrong place and wanting to know why she hadn't been operated on (she had of course) so sleep was a bit disturbed but comfortable.

Wednesday and most of Thursday were a bit uncomfortable but I was got out of bed and taken on walks by a young physiotherapist which surprisingly enough helped a lot. Then Thursday evening the drains were removed from the wound and things really looked up. Almost all the discomfort disappeared and there is a great psychological boost in being able to get up and do things without having to call a nurse to be disconnected from pumps and things. Started using the computer and reading books from that point -- before that I just dozed or listened to the radio.

I will be going home Monday which is great but the results of the biopsy won't be known until later next week. Then they will decide on what further treatment is needed. There is a small chance that what was removed was not malignant but that's not something I'm banking on right now.

And the bad news? Well I am having a running Spoon Battle again -- they keep giving me teaspoons to eat my soup and yogurt with (real men don't eat yogurt with baby spoons) so every time I see a real spoon I 'borrow' it and hide it in my room. Then the yogurt (my staple food) comes in bowls covered in cling film which I find almost impossible to remove, the bowl being completely enclosed. Am I alone in the world in thinking that cling film is the Devil's Invention? When you try to put it on it sticks to anything possible except what it is supposed to and once it is stuck it won't come separated.

So you can see my troubles are really rather trivial!

I wish you all a good weekend -- looks sunny out of my window -- I hope you have the same

love to all

David

2009-03-12 — Tumour news: two steps forward, one back...

2009-03-12T10:20:00.001+01:00

Dear All

It's been a long time since I last wrote one of these newsletters. I have improved so much since the end of the chemo-therapy and was planning to announce this week after spending Monday to Wednesday in hospital for a whole set of what were expected to be routine tests and scans … so much for the "best laid plans of mice and men" (* see note at the bottom of this email)…

Unfortunately, although most of the tests proved fine, they found a new thing on my lung. Quite small but definitely new. My oncologist wasn't able to decide whether it was malignant or not and wanted me to go to my original lung surgeon. I was able to get an appointment with the surgeon last night and he said another operation is the only sensible option. Having established that it would be very unwise to wait the 8 weeks until I'd taught my Webster classes we settled for next week. Might as well get it over.

So I'm in the Confraternität hospital (I might write a 'Patient's Guide to Vienna's Hospitals' with 'bedpan' ratings instead of stars — am certainly getting to know them all) on Monday and will operated on Tuesday. If it is anything like last time I'll be in hospital about a week. Maybe 10 days. Operation-wise it's not a big deal if I remember rightly from last time. I know I spent quite a lot of time in their garden and didn't feel too bad.

Still at least I've got my weight up a bit and am feeling good physically right now so I should be able to handle the thing well. I was (and still am) more upset about letting down Webster and the students than I am about the bad news itself — this is what you get from missionary parents I think — but there is no alternative. I contacted the head of faculty last night and he has already a plan in place to replace me. So that is working out as well as it can under the circumstances.

Apart from the news above I'd managed to add a new problem — a delayed reaction to the chemo-therapy — this new thing is called polyneuropathy — it's a sort of pins-and-needles tingling in my toes and now in my finger tips. Makes doing up shirt buttons difficult but otherwise is just a little uncomfortable — not painful. But they are treating that now and I'm on a course of medication.

Anyway, I'm still in good spirits and once again am grateful that this thing, like the other things that have been detected, was found while it is small and not when it had a chance to grow (actually it might not be malignant but they don't want to chance that). Luckily all the chemo side-effects (apart from the tingly toes thing) are well in the past and so I'm expecting a quick recovery.

Best wishes to you all

David

* do mice really plan things? Or is that the point? Apparently the real quote is "The best laid schemes o' mice an' men gang aft a-gley" which doesn't clarify things much.

2009-01-23 -- A milestone

2009-01-23T15:16:00.004+01:00

I've not been keeping up to date with the blog but today felt so good I thought I'd write down one, to me, significant event; I got a haircut today!

All my hair started falling out after the first chemo session and Chris used his hair trimmer to remove what was left so I didn't look so patchy. Now, I know it is not a big deal to be bald, especially for a man but I hated it. Everytime I saw myself in a mirror, I thought "Who's that old man?" For those with long British memories I thought I looked like Albert Steptoe.

There have been much more serious things happening to me, much more unpleasant things, and overall my experience with chemo has been much lighter than many other people I've heard from, but still I hated losing my hair!

When the dosage was reduced my hair started to grow back. Very slowly, but still it was growing. And this month it reached the point where a visit to the hairdresser was in order. More for a trim than a full blown shearing event, but it was so good to have another 'normal life' back in place.

The staff of the salon (I go to a hairdresser in a building called "The House of Beauty" -- actually "Haus der Schoenheit") were really friendly and pleased to see me and it was nice to be back in the land of the living.

Life is good

David

2008-12-15 Newsletter: End of chemo!

2008-12-15T14:36:00.001+01:00

Dear All

It is along time since I last sent one of these newsletters though of course I have been in touch with many of you individually in that period.

When I last wrote I had finished the 4th of the 8 chemo sessions — each 3 days in hospital and held at three weekly intervals. Sessions #5 and #6 went without problem, but the side effects were a bit more pronounced on the last two sessions, particularly the last which finished on the 3rd December. I was subjected to extreme lethargy — very little energy, unable to do much except the minimum to feed and wash myself. After the last session I also had nausea and felt queasy — something that did not happen after any of the other sessions. In both cases the return to normalcy was almost miraculous — essential an overnight phenomenon. So last Sunday (yesterday) I woke up feeling fine and got lots done in the day — today I was able to successfully brave Vienna's main shopping street and got all the presents that I'd not managed to get through the Internet. So feel very self-satisfied and very happy to be alive and back in the living.

And it is so good to know that the chemo is over and so all physical progress from now on will not be pushed back by yet another dose of 'poisoning'. I have some weight to recover and my blood values are all far to low but my body, which is a bit slow to recover in that area, will at least have a chance to get on with recovery without being thwarted! Great!

Margaret (my ex-wife) had new lumps appear in her neck — under a little pressure from the family doctor the hospital (which had just ignored them it seemed) woke up and scheduled an almost immediate operation. The operation went well and Margaret has recovered well. We will know next week what further treatment she gets.

But for now we are going to have a good Christmas with Sarah and Ben coming over for about ten days (they arrive this coming Thursday) and on the 25th we will all be celebrating together in my flat (at long last with all non-smokers — even cancer had its silver lining) even though one of us (me) will be more involved in the cooking side of the 'groaning board' and will be confined to the usual coffee flavoured yogurt!

I wish you all a very Merry Christmas and a Happy New Year. Thank you all for your messages of support and love over the year.

Love to you all

David

2008-12-11 — Margaret Update

2008-12-11T14:35:00.000+01:00

Another newsletter from Chris giving an update on Margaret

Dear all,

A short e-mail on behalf of Mum, she is now back at home and doing very well. She's been signed off the sick leave, and is ready for work again (a fast recovery).

In terms of the operation, the results came back and it was indeed malignant, but was localised and they have removed all of the cancer. It was a spread from the original cancer as well which is actually good news (means it hasn't come from somewhere else they might not have known about). The next step is to see what treatment they will use, it is not 100% sure if they will do just Radiation, or a mixture of Radiation & Chemo therapy.

Other than that all is well & seasons greetings to you all.

Apologies to those that have sent me e-mails, I haven't had much time to respond lately...

Best regards,

Chris.

David adds…

Margaret has an appointment next Monday (22nd December) with the oncologists and radiologists who will discuss with her what treatment she needs. I'll be accompanying her as translator and moral supporter.

2008-12-03 — Margaret Update

2008-12-03T14:33:00.000+01:00

Another newsletter from Chris giving an update on Margaret

Dear All,

Some of you might have heard, others not but here a short update on Mums situation. Last week after a scan they found in the right side of her neck some 'flecks' that needed to be quickly removed. The preparation process for the operation went through very fast (6 days actually) and today at 10:00am she had her operation to remove further lymph nodes in the neck. The operation lasted roughly 4 hours, ending today at 14:00 and the doctors inform us that all went very well which is great news.

The lymph nodes that were removed will have to be sent to the lab for testing, and if the results comes back negative (malignant), then they will have to schedule therapy sessions, which would most likely start early 2009...

For now though, Mum is recovering in the SMZ Ost and she will remain there until roughly Wednesday next week. As most of you know she recovers very fast, and her main worry is always boredom, so visitors are most welcome

With best regards as always,

Chris.

2008-09-29 -- Chemo #5

2008-09-29T19:17:00.003+02:00

So this is the start of the 5th session of chemo if my reckoning is right. One at the AKH and now this is the fourth here at the Döbling Private Clinic. So three more to go after this, except that they may do more sessions as the dose was lowered last time and remains low this time too. I asked the oncologist (he is really nice and friendly -- and answers questions) but he said it really depends on my bone marrow and how fast it can regenerate platelets.

The room is not as nice as last time but it's OK -- it is cold though, which has always been true of all the rooms (or it's me, going from 90 kilos to 57 does lose an amount of padding and inulation) -- there is a temperature control which goes from '+' to '-' but nobody knows whether '+' is more heat or more air conditioning (i.e. colder).

We seemed to start off slow, so I am only on the third bottle of whatever it is, and this at 19:30. This, like the first one, has the 'Vorsicht' label stuck on it so I guess it is the real stuff. The second was saline solution I think.

My blood counts are still not good so I'm getting two bags of someone else's blood whilst I'm here. By the way, Dr Bach (the 'Guardian Angel' was here when the nurse came in to tell me about the blood transfusions and why. She did that in German. I said I didn't understand so Dr Bach said it in English and I still didn't understand! It wasn't the language -- it was the medical terminology. When they said it in plain English (or German) I was fine. This is a revenge on me for being a computer person -- we do this to others with our jargon.

Had a strange feeling earlier, one I haven't had for about a year. There was a mix-up over my midday meal (no reason, I was here at 10:00 and saw the dietician almost immediately) but anyway I didn't get my meal until nearly 14:00 and I was feeling hungry! Haven't experienced that for a long, long, time! Been mostly on drip feeds or dosing myself at regular times with yogurt just to keep my weight up, and never eating either for fun or because of hunger.

Asked Dr Bach if she thought I was right in postponing the mouth operation (now it is only a correction to my speech and eating ability rather than a medical necessity) from February to June so I could do the Webster courses (and the Inter-Agency Games thing). She said I should try to live a normal life as much as possible and said if I didn't mind the yogurt diet then I should go ahead with Webster -- she said my speech was understandable enough, and getting back to doing what I did before was more important. She's about the only person who understands my feeling of preferring to teach my classes than get back to real food. Of course I'd prefer both immediately, but it is clear that won't happen.

At home my burst of energy that suddenly sprung up about two months ago is still there. It is so good to be feeling so energetic. The dry mouth is a nuisance at night, but it has been worse and I have come to terms with it. Then to confuse things, in the day it is the opposite, it is floods of mucus every now and then, no predictable pattern I can detect -- this is an effect of the the chemo apparently. But these are little things compared to some of the other things over the last year and they are easy to live with.

While I'm not at all being pessimistic, I'm aware that my life expectancy is not infinite and is probably less because of the cancer, and particularly the metastasis to my lungs. I want to get as much as I can out of what time I have. I also want a lot of time of course! And there is no real reason for despair, but getting the most out of each day seems a sensible tactic (and it gets things done and is fun).

Am I have been doing lots since I was here in the hospital last. Most important is that I'm teaching again. It's just one hour a week and only two weeks out of three (to allow for chemo) but it is real -- me in front of a class. And I do love doing it! Am doing Word 2007 for the staff of Webster University (I teach student classes there but had to cancel two because of the operations and long recovery periods) and so am especially pleased to be back. Spent days on preparation and was worried about 'The Voice' but it seems to be going well -- certainly I'm having a ball.

Then there is Spring Cleaning (I am obviously six months out of phase) -- I am really having a major tidying-up drive, so the flat is looking so much better, though the study has a way to go still. Getting really obsessive about it -- sit down in the evening to watch a DVD or read and I'm jumping up every few minutes to rearrange something.

And I've been active on the computer, setting up for the InterAgency Games next May/June (I do registration so it is early but not that early), doing the Cinema Club, and keeping one step ahead of the training I am doing for the Webster staff.

Enough for the first day in hospital, been on the computer long enough!

David

2008-09-15 — Newsletter — Good News

2008-09-15T16:36:00.002+02:00

Dear All

Today was a day I'd been somewhat dreading. I had a check-up scheduled at the AKH (the General Hospital). This one was with the mouth surgeon Professor Ewers. The reason for the appointment was to check the problem with my jaw caused by the radiation last year.

The necrosis (horrible word, sort of a "I'd rather be dead than have necrosis" type of word) was being treated with long doses of antibiotics and this was the acid test — had anything improved?

And the answer is YES! The problem has gone away. The open 'sore' (it didn't hurt but apparently was an open thing) has healed completely. This is an enormous relief, as the worst case scenario, had it remained, was a bone transplant —- replacing that part of my jaw with bone taken from somewhere like my thighbone. This is how I understand it anyway.

But now all is well and I don't need to see the surgeon until after the chemo has ended, and that just to discuss the timing of the much smaller operation to free my tongue and correct my speech and allow me to eat something more substantial than yogurt.

That operation though will not be possible at earliest January or February as I'll need time to get properly in balance (chemically that is) from the chemo. In actual fact it will much more likely to be much later — June is a probable month — as I have two classes scheduled at Webster University for March onwards and look like being involved in the UN Interagency Games after that.

My feeling at the moment is I'd rather have a longer period without chemo and operations and be able to do the thing I really enjoy which is the teaching. Eating yogurt for a couple months is a price I can handle.

Got home this afternoon and checked my mail. There was a letter from the Finance Ministry. I've never yet filled in an income tax form in Austria (didn't need to when I was working tax-free, but the Webster income is taxable — Webster deducts tax, but only relatively recently) and I've had a background feeling of foreboding that someone is going to catch up with me.

So with fear and trepidation I opened the letter and they owe me €167 and want to know how to pay it to me!

It's cold and raining in Vienna, but from my side today has been a great day!

I am hoping the new chemo schedule and my reaction to it goes smoothly from now on and so don't expect I will have anything dramatic to send out in a newsletter for quite a while. I am working (very slowly) on filling in gaps in my blog (my on-line diary) and it can be accessed, should you have any interest in it, from my main web site www.misterwhite.info — I am planning on putting some photos and even some sound recordings on it, but have so many other things I want to also do. It is so great to have recovered my energy and enthusiasm.

Many thanks to you all for your prayers, thoughts, visits and good wishes

Love to you all

David

2008-09-10 — After Chemo #4

2008-09-10T16:34:00.002+02:00

I had the fourth session from the 8th to the 10th. They lowered the dose yet again, not because I was feeling bad — I was feeling really great considering — but because of the values from the blood tests they take regularly.

The other change, because my body just doesn't seem to be very good at handling these types of poisons, is to increase the interval between sessions from every two weeks to every three weeks.

This change means that the last session will be early December, unless they add more sessions to compensate for the lower dosage, in which case it will go on longer.

But I felt good, the room was the best I've had at that hospital, the nurses were friendly and helpful and all in all the three days were a little like having a mini-break holiday!

2008-08-28 — Newsletter, short news

2008-08-29T12:08:00.001+02:00

Dear All

Just a short note to keep you up to date and to share some good news.

The last I told you all was that I was home after nearly three weeks in hospital. Well now the new chemo regime is under way. I have had two sessions (five more to go). They are held every two weeks and involve spending Monday to Wednesday (so two nights) in hospital. So it will go on until early November. But the doses are lower and of course it is much more controlled.

After the first of these I felt a little low but snapped out of it after a few days. This last time (it finished earlier this week) I feel really fine so far. Am in high spirits and full of energy. Really good to be back into my normal mode.

I am also still relieved that the doctors seem to be in control of all aspects of the thing and that I am not feeling somewhat isolated from them as was the case before.

Anyway, it's nice to be back in the land of the living!

Many thanks to the so many of you who sent me good wishes -- by telephone, by email and by hospital visits -- it is so greatly appreciated

best regards and love

David

2008-08-02 — Newsletter — Back home

2008-08-02T12:22:00.004+02:00

Well actually it was yesterday late afternoon that I got home but I was very tired and did only the minimum I needed to do. But it is good to be home.

There were two criteria that need to be fulfilled before I could leave.

First the drainage tube from the abscess had to be removed and the blood infection levels had to be lowered considerably.

For the first, they were very pleased with the progress of the shrinking of the abscess, which was pretty lucky as the drain couldn't be used any more as the abscess had broken open connecting with my lungs — the breathing part. So if the drain were open I'd be breathing in and out through the bag. This suddenly happened on breakfast when I coughed and the bag blew up like a balloon.

Anyway on Monday the 28th, they told me it would the 29th or the 30th. I told them it had been hurting in the night and had to call for a painkiller. About an hour later two nurses wheeled me in my bed down to X-Ray and they did the deed. I was a bit scared about it hurt — but the surgeon told me that the only pain would be them pulling off the bandage, but in fact while this was true, I have an advantage — regarding armpits I am androgynous — for my lung operation I was completely shaved on the left side (leaving me with a slight tendency to move in large diameter circles) — anyway this was the same lung and side. He then told me to breathe in and out deeply for about 7 times and during this he suddenly pulled and it was out — no pain at all. They took a couple X-Rays and it was over.

For the second criteria, the blood infect levels, they were getting very pleased with a new approach — instead of a mixture of antibiotics they replaced them all with just one new one — I'm not too sure when this happened, but they were seriously talking about Friday — which is what happened.

There was a near miss though — after breakfast I was messing about on the computer when they connected the antibiotic. I switched the computer off, and went to lie on the bed to write some notes. No way! My hands were freezing and shaking in a very extreme manner. I pressed the 'panic button' and the main sister came — she immediately called the ward doctor. They were talking about tremens (not delirium though). They couldn't get through to my doctor, so they called for a neurologist. And they detached me from all drips — food and antibiotic.

Then suddenly after 30 minutes it stopped completely. They wanted to reconnect me to both drips but I refused the antibiotic. The neurologist arrived and did some waggling of my hands and blamed it on large amount of antibiotics I'd had.

After that everything went well.

Margaret had stocked me up with food and got some more today. I manage the shorter trip to the place that sells lottery tickets — I have a good feel for this and expect to be rich. On the way back I got kitchen rolls, rubbish bags and that sort of thing. Only just time I stopping buying hair shampoo — and now I realise you don't know why.

The day I went to hospital my hair started falling out in clumps. It is horrible in the shower, like having wet cobwebs over your face and your towel doesn't help. Anyway when Chris and Margaret visited on the first Friday, Chris brought his hair cutting device and he set it to the lowest setting and you can now call me Baldilocks!

My email system has 105 unread emails, 51 of which are replies to the newsletters. I have read the text of them all using the preview pane, but will properly answer every one, but please bear with me if it takes a few days!

I return to the hospital on the 11th for the second chemo session which they will spread over three days. Meanwhile I have no medicines at all to take and am happy to be home.

Love to all of you my friends

David

2008-07-30 — Newsletter — Anniversary Edition

2008-07-30T11:37:00.003+02:00

There is no new medical news yet so I am sending a very different type of newsletter, and possibly one day too early.

It was on the 31st July 2007 that my dentist — God bless him — discovered there was nothing wrong with my teeth (a first for me) but there was something very worrying on the floor of my mouth. He had me rushed off to a mouth surgeon and this whole story started.

I started sending out newsletter or bulletins particularly when I was in hospital (I think I have spent about four months in hospital — one third of the year. When I was unable to send anything — like the three weeks I spent in intensive care — Chris, my son, stepped in brilliantly.

I'm too sure how the original list formed but it grows — I have had two requests to be added in the last week. There about 100 on the list right now.

Each time I send out a bulletin I get lots of replies — by email, my phone or face to face. Many of these comment on 'how brave I am' and sometimes on what an inspiration I am. And it is on that I want to write about now.

If I am an inspiration and if my experience helps anyone who is going through, or who might in the future go through something like this then that is great, and I would be grateful that this seemingly interminable process had helped someone other than just me.

But I am not brave. And never have been. Ever. I am scared stiff of dentists, just to mention one thing.

And I really don't want anyone to think "Well I could handle it like David, but I can't because I'm not brave."

Firstly I believe that when serious diseases occur, then people rise to the occasion. The person who complains all the time about trivial colds — usually calling them flu — stop the whinging and whining when something serious comes along. I've witnessed this often and I expect you have too.

Secondly having a group of friends offering their support, visiting me, emailing me, lighting candles for me is a humbling experience and has a positive experience. Let your friends know — you will be amazed how many you have and how much they care.

And thirdly, fourthly and fifthly I have a method.

#3 is simple, and is easiest expressed as a metaphor. I imagine myself walking on away from whatever last — sometimes unpleasant — thing happened. And I look forward and look from side to side — and I enjoy the scenery on both sides and that in front of me. Or I enjoy the people I meet. The world is so beautiful that all this is not difficult.

I don't look back until the side views and the next destination — the journey really — has settled me down and I can look back and learn from it.

There is a song by Johnny Nash (which I found on a multi-volume collection of Caribbean music — why I bought it I have no idea — called "I can see clearly now" which expresses the same idea but using weather as the metaphor. It is on my IPod here and I play it often.

#4 might not be so easy for everyone. For most of my life I have been an out and out atheist. Probably a backlash against my missionary parents but absolutely a backlash against the boarding school I was sent to at the age 13 (and leaving at 18). Eltham College, with a subtitle name of "School for the Sons of Missionaries". The stupid rules covering the most minute feature of daily life (you were only allowed to use the indoor toilets if you had your pyjamas on, at all other time you had to go to outside toilets about 50 metres away — come rain (this in England) or snow. So I mixed the stupid rules and the over-excessive church-going (more often than my parents ever did) and emerged an active atheist — and reasonably successful rebel — except in the classrooms which I enjoyed.

Just over twelve and a half years ago this changed. I now believe in a loving God who looks after me and to whom I pray daily. And mostly my prayers are answered — though not always in the way I expected.

I do not belong to any church of any kind — I am unhappy about creeds and the like, I believe the trinity is far too complicated — but praying to this loving God works for me and helps me greatly.

Some people may find this a difficult or impossible thing to do and I do understand. But I learned it through a technique called "Fake it until you make it" — and that leads into the fifth point.

#5 is a bit long and you might want to skim read it, as it very personal to me though perhaps to me the most important. I do not want you to become a drunk just to get the help AA can give!

So #5 will be news to some of you but I know many of you know it. I am what is known as a "Recovering Alcoholic". I have had no alcohol for a little over twelve and a half years, but if I have one drink today then within a week I will be back to exactly where I was then — or much more likely worse. I have witnessed this happening and heard of many more instances.

I am a member of Alcoholic Anonymous (AA) — we have some 7 meetings a week in English in Vienna, and I try to go two a week at a minimum.

Some people get sober inside AA, some get sober in a treatment centre (the IAEA and Van Breda made it possible for me attend a prestigious centre in England — this was my "last chance", I'd been in a mess for a long time, but just refused to admit it). But the real trick is staying sober, and for me this was where AA came in.

But AA is about so much more than just not drinking. The 12 steps (a bit like the 10 Commandments but really the 12 Suggestions) only mention the word "alcohol" once. AA is about leading a honest life, a life that is helpful to others, and one that is "happy, joyous and free".

Just one example of the honesty thing, alcoholics lie, almost continually as they fall deeper into addition. My example — I was called in by my unit head and asked, as politely as is possible under the circumstances, how many beers did I drink at lunchtime. My answer was "Two". He was a little shocked, thinking one was perhaps even too much. I left his office extremely angry, went directly to the bar and had two more beers to punish him.

And the honest answer to his original question? "Five. Everyday".

An AA meeting is a form of Group Therapy; we have a shared phone list — so we have a phone network.

Little phrases like "One Day at a Time" which was designed to help those newly sober members who couldn't accept the idea of a lifetime of sobriety to just concentrate on the one day — "Just don't drink today, that's not so hard". This concept is used for life. We do plan ahead, we book flights but we don't worry about spilling our air line food over our clothes. And we learn from the past, but only to try not to repeat errors.

I have received so much help from the programme of AA and the individuals in it. Especially this last year.

On three occasions when I had been in hospital for a long time, a meeting was brought to me. Three or four members came and sat around my bed and a real meeting was held.

English meetings in Vienna http://www.aa-europe.net/countries/austria.htm

I am not a brave man. I am a man with much help.

Much love to you all — the next newsletter will be a normal medical one — it was just that one whole year of this seemed to deserve some special treat.

Much love to you all

David

2008-07-23 — Newsletter — from the PrivatKlinik

2008-07-23T08:25:00.000+02:00

Dear friends and family

Chris has done his usual great job of keeping you all informed. Now it is my turn. This will be a short summary but the details will be filled in, for those who are interested, on the blog when I get home, whenever that is.

I had chemo and for 4 days felt reasonably good — a little headache and minor nausea, but I really thought this it this was going to go well.

Then on the Sunday, my whole world fell in. Absolutely no energy; neither physical nor mental. To get up I would swing my legs over to sit on the edge of the bed, and then have to think what I had to do next. After 2 days of this, I phoned the chemo department 'help line' — this was a Tuesday and was told to phone next Monday for an appointment.

My close friends Don and Lucille knew of a doctor working out of this private hospital — a doctor they thought excellent. This was Saturday and they phoned her and she said she'd see me Monday (14th July).

Which I did, and she is an Angel.

She hospitalised me immediately. It turned out that in addition to the chemo effects my blood was all wrong because of a jaw infection I have that was caused by the radiation of last year. I mentioned I thought I had been coughing up blood and so they did an X-ray and they found I had a lung infection too.

So all this had to be tackled. There was some optimism on Monday (21st July) but a CT scan showed a new thing — an abscess on my lung 7 cm by 6 cm, so this had to be dealt with.

And it was yesterday. A local anaesthetic and they poked a needle straight through my chest into the lung and into the abscess. I will post details later on the blog as it was most interesting. I now have a drain tube going to a bag which goes everywhere I do.

So I now have to wait for that to heal.

The Angel doctor is taking over my complete cancer case and coordinating everything. Already she has had scans made of my lower abdomen and we now know there is no spread there. This is such a relief.

All future chemo sessions will also be done here probable as an inpatient while they monitor my reaction.

I am so happy that finally someone is really looking after me.

My confidence and optimism have returned and life is good

Many thanks to all of you, who have emailed, phoned and visited me. I am humbled to have such good friends

Much love

David

2008-07-21 — Newsletter — from Chris #2

2008-07-21T12:31:00.002+02:00

Dear All,

Just a short note on behalf of Dad, since his return to Hospital he is in much better health, as it turns out he was suffering 3 fold;

1) Bad Chemotherapy reaction,

2) Lung infection &

3) Inflammed (infection in the) mouth… So certainly very understandable to as why he was feeling so bad.

Like I said, he is doing better now, but during the course of the day he is taking onboard many drips that last for hours on end and as a result he is still very tired and using his laptop can be a bit of a hassle, he would like you all to know that once he is back home - which should be sometime during this week, depending on the test results that should be coming back very soon.

I am off to the UK tomorrow, but once my Dad is back home he will do his best to send out an update.

Cheers & Best Regards to all.

Chris.

2008-07-14 — Newsletter — from Chris

2008-07-14T12:29:00.001+02:00

Dear All,

Some of you by now might have already heard the news, but I'm sure most of you will not and so I send a short update on the current situation regarding my Dad. Today, after a horrible last week, Dad has been re-admitted into Hospital. It has been 2 weeks since his first proper Chemotherapy and it appears to have hit him hard. He is very weak, all motor skills have been drastically reduced, sleeping consumes most of the day and last week he was definitely suffering from depression. This weekend he stayed with Don & Lucille whom many of you know, and I think this was good for him, but now that he is in Hospital he already feels much better.

I don't know too much more on the situation as yet, but my understanding is that they will do some tests to find out exactly what is going on with his body at the moment, and keep him on a drip to pump him with calories and all the things the body has been lacking of late. My personal opinion was that if the reaction to the therapy is so extreme that they would probably put the next session on hold, but apparently they have mentioned that they will most likely go ahead with the next session on the 22nd of July in the hospital he currently resides in.

The details are as follows:

Hospital; Privatklinik Döbling
Address: Heiligenstädter Str. 57-63, A - 1190 Vienna
Web Address: http://www.privatklinik-doebling.at/index_en.php

For those who wish to visit, this is not a problem, he is in a single room and the room number is currently 266, but I would suggest that if you do wish to visit that you send him a text message in advance so that he can confirm or advise on a better day or time if necessary. For those that do not have his mobile number it is: xxxxxxxxxx. It's also advised to leave your name in the message just in case he does not have your number stored… He is currently not available via e-mails, but should have his computer with him come the end of the week.

Other than this there really is not much more I can say, as soon as I hear anything more concrete on test results or how the doctors plan on proceeding I shall inform you of it.

With best regards,
Chris.

2008-07-01 — More on the chemo-therapy

2008-07-01T21:56:00.003+02:00

I was quite impressed with the efficiency of the procedure. Arrived just before 9:00 (my appointed time) and by 9:15 there was a thing in my vein and the first litre of whatever was dripping in. This is a marvel for a hospital where they continually say "Ein bißchen Geduld" ("have a little patience") but they really mean "have an enormous amount of patience". But then I realised there were no Professor's directly involved. So it worked like clockwork.

When each liquid draining into my vein finished, the machine gives out incredibly loud beeping — really annoying — and I have to buzz for a nurse. They come promptly, disconnect the tubes and within five minutes connect the next one. Very efficient.

We were in a room for three that had four beds crammed in. When I got in the room there were already two people there — Mr Happy by the window and Mr Grumpy at the other end. Mr Grumpy was being 'tubed' and he was moaning and grumbling non-stop — not at the nurses and doctor, but at his wife. He hardly ever stopped being rude to her. She just accepted it all and kept trying to please him — to no avail.

I chose the bed next to Mr Happy and we chatted a bit. He was 72 years old, severe lung cancer and was still smoking — "but only 10 a day" — but he seemed pretty jolly about it all.

We were joined by Mr Spoon (actually Herr Löffel, but this is an English document). He was in and out in 20 minutes. Mr Happy's stay was also pretty short. There are different treatments, quantities, durations and frequencies for each patient and cancer variation.

Mr Grumpy left just before me, and left me feeling a bit guilty as he wished me good-bye and wished me well in a very nice way — so not an all bad man — and I am a critical bastard!

Incidentally my newsletter of earlier today got bounced from one English web site for inappropriate language. I replaced "F word" with "a naughty word" and re-sent the message but it still got bounced. So I gave up — actually I didn't; I wrote a silly letter of complaint which I know will get dumped in the waste basket straight away. But it puzzles me as to what was the thing the computer objected to. Machines!

I was told not to expect any bad effects today so took advantage of this to go out in the evening. Not all, but many of you, know I am a member of AA and have attended meetings for more than 12 years regularly. So I went to a meeting — where I was able to share some of my experience and also listen to people with problems that are much more serious than any of mine. I am lucky to be alive and there is so much in each day to enjoy and be grateful for.

Tomorrow I may not feel so good — or maybe the bad effects won't happen or won't be that bad — but for now things are good. So I'll crack open another coffee flavoured yogurt and eat it while watching an old episode of "The West Wing" — one of my favourite TV series ever.

Life is good.

2008-07-01 — Newsletter — the first chemo-therapy

2008-07-01T16:48:00.001+02:00

It is a month since I last sent out a newsletter and there have been some developments. When I last wrote I had just had the lung operation.

What was removed was confirmed to be secondary cancer (metastasis from the original mouth tumour — apparently a rather low probability of occurring and I have been very lucky in that it was detected almost by chance).

A return to my mouth surgeon doctor started up a plan involving a full body PET scan, a visit to the chemo department (a new Professor, Professor Kornek —she is blonde which makes a change for the generally balding ones I get).

The plan was to do a quick mouth operation to free my tongue and to let me speak and eat properly and then start on the chemo-therapy.

However before all this, the surgeon started a quick inspection of my mouth which turned into a bit of a flap with two assistants holding those dental mirrors on sticks inside my mouth while he prodded and poked with a sharp instrument, and then took out two smallish slivers of what looked like bone. This was not a painless event and it is possible that I uttered the F word while he was at it.

Anyway he bottled the extracted bits and they were sent for tests.

A week later the results came back — 'not a tumour or anything malignant' he said with obvious relief but signs of a bone infection which involves a course of antibiotics and means the operation has to be postponed — indeed also that the chemo-therapy must now come first.

This means my dreams of talking better — I had planned on asking for an improved voice (Richard Burton, or even better Alan Rickman) while they were at it will have to wait and instead the chemo-therapy may well result in my becoming instead a Yul Brynner with a speech impediment! But bald will be beautiful!

Anyway there will be four chemo-therapy sessions spaced out every three weeks. And today was the first one. It is done as an out-patient, arriving at 9:00 and today it finished at 14:00 — so five hours. They attached a tap to a vein in my arm and then pumped in four liquids. The first and last were some sort of electrolyte fluid (a litre each) — the third was, no kidding, a litre of Cooking Salt ("Kochsalz") so I am well seasoned. The second infusion (is that the English word) was smaller and was the real chemo stuff.

I have a set of medications to take over the next few days including the World's Most Expensive Injection — €1,900 for one dose — which I have to jab into my thigh. They anticipate some nausea and I have something to take if that occurs.

I am in good spirits though. The day's session went well and efficiently which is always a help and I am tending to dwell on other things which are coming up —some Webster University staff training I will conduct, a real course for the students, some work for the Photo Club, taking my web page photographs — I am definitely back in the land of the living after the setbacks of last year.

I do not have much mortality worries, and am full of confidence, though of course the severity of an illness such as this cannot be ignored. But rather than brooding on a possible life shortening I find myself concentrating instead more on getting full value out of each day. I am feeling very much more aware of quality of life rather than just quantity of life. However, despite all this I still anticipate keeping to my original plan of at least exceeding age 82 as by this age I will have received my pension for longer than I paid in to it, and I will have beaten my mother and my grandfather in longevity!

I have been collecting these newsletter plus the brilliant ones Chris sent out, and am putting them in Blog form. There are still gaps to fill but there is more detail than in just the newsletters — if you are interested and don't think it too much of a self-glorifying exercise by me (I am still not sure of this) then it is here http://just-another-cancer.blogspot.com/ — the first thing you see may well be this newsletter again — use the link Older Posts at the bottom to step backwards or use the dated links at the side.

Still missing but coming in a few weeks are my recollections of the period in intensive care — I was not going to write about that but it comes back on and off, and I'd like to set it out before it really fades. So that will be something to look forward to — David searching for the embedded hard disk in his back; David being blackmailed by one of the nurses; the all night party held in the intensive care ward; the trivial pursuit game in the next room where I heard all the questions and knew all the answers; and why the English volunteers ignored me. All good stuff and all totally hallucinatory.

Much love to all of you my friends. I am very aware of being in your thoughts and prayers and you are in mine.

David

2008-06-26 — Big jar

2008-06-26T14:30:00.004+02:00

I mentioned that I needed some tests done before the chemo could start. Well I went off this morning to have those done — that is they took the blood to do the tests. I also had to provide a urine sample.

Now normally you get this little jar and often enough I have problems providing enough for them to work with. This time it was different. They wanted samples gathered over a 24 hour period and had given me a jar for this purpose. I thought I'd share with everyone the scale of the task.

Anyway went off in the bus today with Big Jar in a plastic bag — all the while praying that it wouldn't break or leak or something on the way.

2008-06-26 — Margaret Newsletter #10

2008-06-26T13:52:00.001+02:00

Another newsletter from Chris giving an update on Margaret

Dear All,

It has been a while since any contact, but I am writing a short note just to give you the latest news on Mum. Tuesday the 24th of June marked the last day of Radiation Therapy. Mums reaction to the radiation treatment was good with minimum irritation.

The end of the treatment marks the end of this chapter. All her tests have come back positive so far, and hopefully they will remain so in the future.

Mum remains in very good spirit, and I think the only thing that she is/has and will continue to complain about is the fact that I still have not acquired her a bicycle! It will be coming soon.

Like I said, a short note. I hope you are all well,

Best Regards,

Chris.

2008-06-24 — More Oncology

2008-06-24T13:26:00.001+02:00

So went in early to the hospital and — this is hard to believe — didn't have to wait at all! This is a first. I was seen by Professor Kornek's assistant — a younger male doctor, Doctor Vormittag — his name means 'morning' — must come from a family of early risers — no wonder he didn't keep me waiting, but he's not on the right track to be a professor!

We talked quite a bit about what was involved and a date was set for the first session — Tuesday the first of July. I have to be there about 9:00 and it'll be over at around 16:00. It's in a day-clinic high up in one of the two towers of the hospital where the normal wards are. It'll be a 'two books and an IPod' occasion.

There's a whole list of medications I have to take at home in the two or three days following each session and he went over these for me. Before all that I have to have some tests done and the results faxed through to him — tedious but nothing special.

2008-06-24 — and Margaret’s milestone

2008-06-24T11:26:00.002+02:00

Although this blog is primarily an account of my encounter with mouth cancer (and now the spread of that to my lungs), it also touches on the case of Margaret, my ex-wife. By what seems a very unlikely coincidence, Margaret was also diagnosed with a mouth cancer. Hers is a tumour on the tongue rather than one on the floor of the mouth, but still it does seem a coincidence. We are able to compare notes and give each other a certain amount of support.

Margaret had her last radiation therapy session today. Her mouth has started hurting more over the last week or so — making it impossible to eat normal food but her doctors say it should improve over the next week. She seems to be handling it all well and certainly likes the doctors who have been treating her.

2008-06-23 — Oncology and more

2008-06-23T16:10:00.001+02:00

So I set off early today to the AKH. After waiting until 10:30 for my 9:00 appointment I was about to check I'd not been overlooked when my name was called. I've seen Professor Kornek once before — in August when she signed off on the chemo dosage.

She explained that the procedure whereby the first surgeon to handle a cancer stayed as lead doctor for the cancer was normal, but now that it had spread this changes and she would be taking over except in matters specifically involving my mouth. This is good as this was something that was worrying me — I wanted a 'cancer supreme commander' and not just a series of isolated or localised surgeons and now I have that.

She outlined a course of chemo-therapy involving 4 sessions (as an out patient but taking most of the day) spread out at three weekly intervals. She wanted to start next week but when I told her about the planned mouth operation (planned for 2^nd July) she said we'd start a couple of weeks after the operation.

She gave me some prescriptions for medication I will have to take after each session — these medications cost the earth — the chemist didn't have them all in so have to pick them up tomorrow when a juggling act with credit and debit cards will have to be done. I can't imagine what the stuff for the chemo-therapy itself will cost!

I then dropped in to see if Professor Ewers had any news on the operation — he was actually operating at the time, but I was asked to return in two hours as he wanted to see me. Another spell of waiting and general hanging about!

When he came he had a visiting Professor from South Carolina with him so we spoke English for the first time. The good news is that the slivers he took out (see June 6th) are not anything malignant but the tests do indicate I have some kind of bone infection.

He prodded around (agony!) and took another bit out, and said I need antibiotics but that the operation cannot now be done when planned. The infection must clear first and the operation will now have to be done after the chemo-therapy. So it's another three months of talking funny and eating yogurt!

Yogurt shares rose on the Austrian stock exchange when the news leaked.

As I left the hospital I was called and an appointment had been made for tomorrow at sparrow's fart (i.e. early) for me to see the oncologist again and start setting the plan for the chemo-therapy.

Anyway — a nuisance about the operation but the slivers were not anything life-threatening, Professor Kornek is taking the lead role in treating cancer wherever it may come and she also said that while there are never guarantees, nevertheless the survival chances still remained excellent for my case. Brilliant overall!

2008-06-18 — the PET scan

2008-06-18T16:31:00.001+02:00

This was not what I remembered from last year. I was sent to the same place as last time (in the basement) but they had no knowledge of my appointment so phoned around and sent me down to the sub-basement — next door to where my radiation took place.

I had to wait a while but this time it was my fault as I arrived early. At exactly the right time (Professors, take note) I was called in. They injected three assorted liquids into a vein and told me to wait, lying down, so that my muscles would relax. This is where I do badly — without a book I get so bored and uncomfortable.

When the time was up we went down yet another level (obviously these radiation people are put well out of the way from normal people — rather like businesses do with their computer sections).

The machine was similar to a CT scanner — the bed went in and out of the scanning ring twice, moving a step every four minutes (their briefing to me — I couldn't see my watch). Lasted 40 minutes and was just uncomfortable to lie in one position so long. Otherwise OK, but nice when it was over.

So that is done and the next thing is the oncologist next Monday.

Had to skip breakfast so had 2 big yogurts when I got home — oh the exciting life I live.

2008-06-17 — The AKH phone me — twice

2008-06-17T18:07:00.002+02:00

The secretary to Prof Ewers called me today and said the two surgeon Professors discussed my case and have setup an appointment to see — wait for it — another Professor! This is to be next Monday, early in the morning.

What is the name for a collection of Professors? Couldn't find one on the internet. Anyway I've got one of them. An Appointment of Professors?

I asked what was the speciality of the new Professor (Professor Kornek, I think she said — actually Frau Professor Kornek — so a lady professor). An oncologist was the answer. This is what I wanted yesterday — someone whose job with me is not over once a particular operation is over. Great!

I mentioned that I had not heard from the PET people (see yesterday's posts). She said she'd check.

I got a second phone call from the secretary and the PET is all setup for tomorrow. I have to be five hours 'nüchtern' (I don't know the English word, have I lived here too long? — it means without food) and the appointment is for 11:00 in the morning. The secretary said that I should get up a bit before 6:00 and have breakfast then, but I think I'll just skip that.

So things are moving, and both new things are addressed at the detection or elimination of possible new cancers and so I am pleased with this news.

Yesterday I was feeling a bit isolated — had a feeling that a lot was being left to me or — even worse — to chance. Now suddenly the holes I could see look like being plugged — I am very grateful for this.

So, a good day and I went out with the camera to celebrate. Photographed some enormous football boots (the European Championship is on in Vienna at the moment), walked around a bit and got thoroughly exhausted physically. Forgot that it was only a few weeks ago I was in hospital. Last time this happened to me I was in London with my daughter and she carried my camera for me (I was that tired) — no such luck this time, but still a good day.

2008-06-16 — Postscript

2008-06-16T18:04:00.000+02:00

I forgot to say that the full body PET scan was not quite set-up — everything was done except to set a day and time. The PET people will phone me — but I do have the all the necessary paperwork (and in the AKH this is a very important step).

2008-06-16 — Back to the AKH, and some confusion

2008-06-16T17:01:00.002+02:00

So Prof Klepetko (the lung surgeon) sent out a letter to my other doctors stating what he'd done and suggesting my mouth surgeon (Professor Ewers) and an oncologist consider further treatment. He also suggested that a PET scan (full body nuclear scan — have had one of these last year) be done.

So I'd made an appointment for today with Professor Ewers. Also up for discussion was the next operation on my mouth — we had booked 2^nd July tentatively for this operation which is to free up my tongue movement.

We had (why do I write 'we had'? — it's 'I had') the obligatory one hour wait before seeing the Prof. He looked into my mouth and suddenly swung into action. With a bit of prodding and poking, helped by two other people holding those mirror-on-a-handle things dentists use (and a level of discomfort on my part) he removed two objects with tweezers. The first looked like a pointed sliver of bone (about 3 or 4 mm long) — the second seemed smaller. They put them in little jars which they labelled.

There was a bit of bleeding so I had to spend the next 10 or 20 minutes clenching a bit of cloth between my teeth — answering questions even less distinctly than I do normally these days.

I then had to go next door for a mouth X-Ray and then wait to see the Prof again. He asked me how I felt and the conversation seemed to swing around to the operation taking place — provided the analysis on the things he removed was ok.

The analysis can take 2 weeks and the operation is also in 2 weeks and when I pointed this out we came to a sort of a Heath-Robinson solution whereby we'll phone around (labs, me, the Prof) next Monday to decide.

There was no mention of the secondary cancers taken from my lungs — so I raised this. He said it was up to Prof Klepetko — I pointed out that Klepetko had written that it was for Prof Ewers and an oncologist to handle — a bit of muttering and checking the letter ensued — the solution is that they will check with Klepetko.

What is of concern to me, is that there seems to be no overall chief dealing with my cancer. Rather I have specialist surgeons, each dealing with a specific part of my body. If I did not raise the question it might never have been addressed — luckily I can read medical German at a sufficient level, and also that I make a point of actually doing so with the letters I get for handing over from one doctor to another.

And the things they removed from my mouth? I had to ask and am not still not sure what the answer is. Probably not cancerous things, probably 'necrosis' — which doesn't look too good on the internet so I stopped reading about that — and probably a side effect of the radiation. I guess this will be clearer next week.

2008-06-03 — Newsletter

2008-06-03T14:47:00.003+02:00

Dear Friends

It has been a long time since I wrote one of these letters.

Many of you know the latest news (if so then just delete this, and I'm sorry to bother you) but I am not sure who has and who hasn't.

The good news is that I've been feeling really great since getting over the mouth operation and the intensive care episode — am still confined to essentially a liquid diet but you get used to anything — the weight I lost was a 'good thing' and I have felt much fitter and much more comfortable. A recent CT scan of my mouth and throat area has provided good news and shown no return of the tumour. Essentially, apart from a minor speech problem which sometimes confuses people in shops and makes them treat me like a Dorftrottel (village idiot), I have been in pretty well top form.

I no longer have to take my blood pressure medicine (before I stopped it I had one day with very low pressure which prompted me to faint and involved a trip to hospital in an ambulance as a suspected stroke victim — turned out ok but was scary, and I was very lucky that Margaret was here at the time and acted promptly)

The bad news is that a routine lung scan suggested by one of my normal routine pre-tumour doctors showed up two new things on my left lung (they are called Rundherde in German — which directly translates as 'circular stoves' — obviously not things you'd want in your lungs! In real English they are/were circular lesions).

Despite this news, the scan was really a piece of good luck — almost as much a random coincidence as the dentist visit which caused the detection of the original tumour — I am feeling a very lucky person and am exceedingly grateful for that

I was immediately sent to a lung surgeon (yet another Professor for my collection) and he made an appointment for an operation to remove them — this was all about 3 weeks ago.

The operation was done on Tuesday night, 27th May and on Monday 2nd June I got home. So no nasty complications this time thank God! I was not in the AKH (the large state central hospital) this time but in the Confraternität — a private hospital with very friendly and helpful staff and a beautiful shady rose garden where I spent much of the weekend reading, listening to my IPod and sipping coffee).

I have yet another scar to show for it — a year ago there I was with perfect unblemished body (dream on, David) and now I am starting to look like a practice stand-in target for a circus knife throwing school

While the lab tests won't come through until Wednesday, the surgeon says they were certainly secondary cancers — offspring of the late but not lamented mouth tumour. He is pretty sure he got everything out but it is almost certain I will be in for chemo-therapy treatment. This will all be carried out by oncologists under the supervision of my original mouth surgeon but it'll take a week or two before details and plans are clear

Meantime I am feeling in good spirits, am confident and have been very grateful for the visits, phone calls and emails from many of you, my friends. Many, many, thanks!

love to you all

David

2008-04-17 — Margaret Newsletter #9

2008-04-17T08:21:00.001+02:00

Another newsletter from Chris giving an update on Margaret

Dear All,

A very short update indeed, my Mum just wanted everyone to know that today she received the news from the Doctors that there will be no need for Chemotherapy. There will be, starting on the 9th of May, 5 or 6 weeks of Radiation Therapy though.

Well, like I said, very short. She is available of course on her home, and mobile phone.

I think she much prefers text messages or phone calls to e-mails as connecting to the Internet seems to be a bit of a hassle and is very slow with a dial up modem.

Cheers,

Chris.

2008-03-26 — Margaret Newsletter #8

2008-03-26T18:20:00.000+01:00

Dear All

Just a short addition to Chris' email. Margaret called me a little while ago to say that she has been told that the biopsy from the node removed in the second operation proved to be benign — so this is very good news.

She also said she will definitely be leaving the hospital on Friday

cheers

David

2008-03-26 — Margaret Newsletter #7

2008-03-26T08:19:00.002+01:00

Another newsletter from Chris giving an update on Margaret

Dear all,

I return after a nice long Easter weekend (5 Days), which was well enjoyed.

Now it's back to work.

I short update on my Mum, the operation went well, and it's just a matter of waiting until they remove the stitches and she should then be set free. We are expecting that to be this coming Friday, the doctor will only inform Mum on Friday when she will be released, so it could also be Saturday when she gets out.

With the operations all having been a good success, we are now waiting for results back from the lab. This is expected to be with us on Thursday, the results are those of the second lymph gland that was removed. Not sure about the implications of the results, we shall cross that bridge when we get there. Assuming all is fine, the next phase will be for Mum to recover from these past 3 operations. Once that is over, roughly 3-4 weeks we think, then a new phase begins, therapy. I don't want to speculate on how this will be, it varies from person to person, we will once again cross that bridge when we get there.

So again, those living in Vienna - visits are welcome, but Fri/Sat Mum will be out of hospital.

Best regards,

Chris

2008-03-20 — Margaret Newsletter #6

2008-03-20T08:18:00.002+01:00

Another newsletter from giving an update on Margaret — Chris has delegated this email to me, but he will be back in the chair on Wednesday

Dear All

Sarah and I took Margaret to the hospital this morning for 8:00 — she was quickly booked in and of course, as is the way with hospitals, then had ages to just hang around waiting. I left her around noon in the care of Sarah, and Chris will be going round after work.

Everything seems to be going smoothly and her operation will take place first thing tomorrow. They estimate about two hours for the operation and so it is highly likely she will be back on the ward early afternoon (if not earlier).

Margaret is on the same ward as before (ward 64 — HNO, room 23) and she has her mobile with her. She will be able to receive calls and visitors as of Saturday for sure (or even tomorrow if she recovers as quickly as she did last time)

Chris and Sarah join me in wishing you all a happy Easter break

David

2008-03-15 — A reply from Margaret

2008-03-15T08:15:00.000+01:00

Dear All,

Just a quick note to say THANK YOU to everyone for your thoughts, visits, hugs, kind words and support - you have all been the most tremendous help to me at this time. It was not good to hear that I needed the second op but that will be over this time next week and all should be well (hopefully), thereafter it's a case of waiting for the therapy - don't know when that will be yet.

Once again, thanks to everyone.

Much love

Maggie

2008-03-12 — Margaret Newsletter #5

2008-03-12T08:14:00.001+01:00

Another newsletter from Chris giving an update on Margaret

Dear all,

Just a short message this time to inform you that our patient is back at home now. She has been added onto this distribution list so feel free to e-mail her directly or those that call can still call.

Like I mentioned previously our Sarah arrives on Tuesday, so Mum has time to spend with her, but it's back to Hospital on Thursday for her Friday operation followed by a week of waiting for stitches to be removed. 3 or 4 weeks later they will start preparations for the therapy treatments to come.

Until then. This is me signing off for a while,

Chris

2008-03-11 — Margaret Newsletter #4

2008-03-11T08:13:00.001+01:00

Another newsletter from Chris giving an update on Margaret

That there was a possibility of a second operation had never been mentioned to Margaret by any of the doctors, so this came as an unpleasant shock to her. In my case I was warned that this would be a distinct possibility but I was lucky and it was decided not to be necessary. It does show how varied the information given (or not given) by doctors can be.

Dear All,

Since Update 3, things have changed. I was round yesterday, and have just now spoken with Mum and things are now somewhat clearer. It is so: The lymph gland that was removed was malignant, because of this they have now decided that they must operate again, and remove the other (left) lymph gland. Once all has healed (usually about 3 or 4 weeks) then they will start the preparations for therapy. So the timeline currently looks like this:

Tonight will be the last night in hospital for this stay as Mum is being released tomorrow. Sarah will arrive next Tuesday so good for them to spend time together.

Mum will then go back in for the operation which is scheduled for next week Friday. After that operation it is apparently a 7 day stay in the hospital until the stitches are removed, and then comes the rest and recovery period. Once they feel everything is ready, somewhere between 3 and 4 weeks later, they will start with the Therapy.

So, visits still welcome tonight, but as of tomorrow she will be at home.

For the time being, thanks again for all the support, I know my Mum really appreciates it.

Chris

2008-03-10 — Margaret Newsletter #3

2008-03-10T08:12:00.001+01:00

Another newsletter from Chris giving an update on Margaret

Dear all,

So it has now been one week since my Mum went into hospital, and she really is making good progress. Those that have visited or talked with her on the phone know just how well she is doing because she able to talk without any problems. We now know that they started the operation using laser surgery, which lessens the bleeding and swelling, but that they could not do the whole thing with laser so it was finished off with traditional methods, sharp knife and then stitched. Although I have not seen for myself, but my Mum has - the scar on her neck seems to be pretty good, tidy and apparently shaped like the letter T.

Psychologically she is doing fine, in fact her main concern at the moment is the state of her hair... All in all she is looking good, the swelling doesn't look at all bad and her main battle is that against boredom.

On a more unfortunate note, it was a 99% possibility but has now been confirmed as 100%, is that therapy will have to take place. The results of the lymph gland came back as malignant, so It will be a combination of Chemo & Radiation Therapy. I'm not exactly sure when this starts, or how it will work, but I will have more information on this later on.

Today they start preparing things for the radiation therapy, they have to create some sort of mask thing, and tomorrow I understand the stitches in both her tongue and neck will be removed. Tomorrow they will also start feeding proper food, and depending on how well that goes, she should be out of hospital later on this week. BTW, she has in the last 7 days actually gained 2 kilos, so that good news.

Today also marks her '1 week' anniversary of quitting smoking.

Once again, thank you all for your support, those that have visited I think you know it means a lot to my Mum and she really appreciates it.

Until the next update,
Take care,

Chris

2008-03-04 — Margaret Newsletter #2

2008-03-04T08:09:00.001+01:00

Another newsletter from Chris giving an update on his mother Margaret (my ex-wife).

Dear All,

Super busy at work, got a Japanese delegation coming in, and it's fallen on me to prepare!!!

Bottom line, operation is over, and Mum is doing just fine. She's being well looked after, but will have more details later. My Dad briefly popped in to say hi, and he said she looks very good, not so much swelling, and she is aware of everything - and looks forward to her visits in the next couple days.

Will get back with more once I've sorted the Japanese out.

Chris

2008-03-03 — Margaret Newsletter #1

2008-03-03T13:10:00.002+01:00

Although this blog is primarily an account of my encounter with mouth cancer, it also touches on the case of Margaret, my ex-wife. By what seems a very unlikely coincidence, Margaret was also diagnosed with a mouth cancer. Hers is a tumour on the tongue rather than one on the floor of the mouth, but still it does seem a coincidence. We are able to compare notes and give each other a certain amount of support. This entry is the first of a number of newsletters that our son Chris sent out to Margaret's friends and family

Dear all,

I have compiled a distribution list of those who have requested, and those who I thought might be interested in my Mothers progress. Please feel free to forward onto others whom I might have missed out or to those that might also have an interest.

To give you all a brief idea of where we are; Today at 09:30 she went into the SMZ Ost and is scheduled to have her operation tomorrow morning. For those that don't know the details, it is a tumour in the tongue, with a 2cm diameter. This will be removed, but also her lymph gland on the right side of her neck. The operation will take around 4 or 5 hours, and barring any complications she will be monitored for a further 3 hours before being returned to her room at around 16:00.

The next step will be recovery. Apparently my Mum is known for being a fast healer, and I hope this is the case. Her tongue will inevitably be swollen and will have to be rested for the healing process, so communication will take place with pen and paper, for some of us this is quite a bonus :)

For those who wish to visit, the hours are as follows: 14:00 - 17:00, and 17:00 - 20:00. In the evening visiting session the visit is restricted to outside the actual room where patients reside, I guess so that others in the room get their peace, but there are apparently smaller rooms that one can sit in and that are quite nice.

I will be visiting her this evening, and will make my plans with her for the rest of the week. Tomorrow either my Dad or myself will be in contact with the hospital to find out how things went and as soon as I have any news I shall let you all know. I would not recommend a visit tomorrow, unless of course my Mum tells me that this is what she wants in which case I shall let you know.

Well, I will leave it there as a first update. I know my Mum is very touched that so many people are thinking about her, and I thank all of you for your support and your strength.

Until tomorrow, have a nice evening, and best regards,

Chris

2008-02-23 — Email extract

2008-02-23T14:59:00.002+01:00

How are you? Hope all is well. Very sorry I missed you when you were here in December.

I am very much improved now. Last week I got the teeth — they are removable and temporary teeth, I'll get better and permanent ones in a few months when my jaw and gum have settled down. So now the 6 tooth gap at the front of my mouth is plugged. I still talk with a bit of a lisp (my tongue has a way to go to regain flexibility) but it all looks better and eating, and even drinking, is easier.

Basically I can do everything that I could do before the whole thing started apart from still having to rely on fairly liquid foods and so life is good.

Will be going to England on 6th March to stay with my brother for about 12 days and also visit my daughter who only saw me in hospital on her last two visits here.

Meanwhile by a strange coincidence my ex-wife Margaret has also got a tumour in her mouth. Hers in on the tongue rather than the floor of the mouth. She has the operation in a week's time and will probably have radiation and chemo therapy afterwards — for me it was in the other order. We are on a friendly basis and so I'm using my experience to try to help her through this — also go on the doctor appointments as her German is pretty shaky. Feel sorry for the children who have to go through this a second time.

Still at least the prognosis is good for both of us which is something to be very grateful for

All the best

David

2008-01-24 — Newsletter – Progress report, from Home!

2008-01-24T15:03:00.002+01:00

Dear All

I hope that I've managed to get everyone that Chris used for his bulletins into this email. I sent out an email a week or so but for reasons I don't understand it got rejected for a large number of people — am trying a new approach.

Anyway, I have now been at home for just over a week. Am mobile, though the stairs to my flat were a trial at first, and am restricted to liquid foods — soups and yogurts. I can eat (drink) with much less mess than before — before was dribbling and spurting all over the place! The muscles and nerves in the left side of my face were bruised from the operation and have not come back properly to life yet — have exercises to do and there is progress.

On the cancer front — the tumour is gone and there are no traces of any spreading. So very good news on that front.

The intensive care episode was well described by Chris and there is little I can add to what he wrote. It was a horror. Apparently quite common that this sort of thing results in a temporary psychosis due to the drugs. There were periods of lucidity though and of great happiness — the attached photo was from Xmas day where I was reasonably normal and so happy to see Chris and Sarah.

Chris and Sarah had to put up with a lot in this period and I am so proud of them both. Chris in particular had to do a lot by virtue of being the one on the spot and his visits were such a pleasure to me and his bulletins gave me great pride in him. Poor Sarah came over for Xmas and just got to see a fairly mad father!

Now I'm waiting for teeth. They had to remove a part of my lower jaw at the front and 6 teeth went with that. My surgeon is 'the Professor' and he works with a dentist who is also a Professor — to get started the receptionist needs to find a time when both professors are free — so far impossible. There are times when it's much better to have a normal doctor or dentist! When the teeth are done then eating and talking will be easier.

Lastly, many many thanks to you all for your help and encouragement — by email, by visits, by phone, food parcels, and by your prayers. I am so touched and honoured by the concern shown by so many people.

Much love to you all

David

2008-01-14 — Newsletter – Tubeless and going home

2008-01-14T15:10:00.002+01:00

"TUBES? WE DON'T NEED NO STINKIN' TUBES"

Dear All

Progress has been so fast that tomorrow morning I am being sent home. Since getting out of intensive care I relearned to stand and walk in the first week and the second week was re-learning to eat.

I have had a tube down my nose and direct to my stomach since September last year, and then an operation affecting my mouth leaving me missing the bottom 6 front teeth and with a tongue feeling like a slab of alien matter just lolling about in my mouth so with all this eating, even though it was and remains only pureed food is difficult

And very inelegant. Dribbling and slurping and a real battle. I've had the help of a therapist who gave me mouth exercise to do which have really helped. Fighting both the incredible horribleness of some of the food (for those of you who know Austrian knödels, they are unpleasant when liquidised), and my own temptation to sneak into the bathroom and pour most down the toilet —finally some results showed.

I ate 'real food' the whole weekend and never once used the tube and so it was removed this morning. I need work done on teeth replacements but that will be done as an out-patient — just like visiting a dentist.

Chris picks me up tomorrow and will help me get settled in and get some supplies in.

To all of you who have expressed so much love and support to me — I am so very grateful. God bless you all — you really have all made this rather unpleasant experience so much easier to bear.

In a week or two I will perhaps send you a photo taken of me with Chris and Sarah on Xmas Day (one of my more lucid days) and also perhaps some photos of the cool scars on my arm, but for now all the best to you all

David

2008-01-11 — Email extract

2008-01-11T15:06:00.002+01:00

…

Am well on the track to recovery now. Am mobile and have my single room back (with its own shower etc) and that makes life more comfortable. Am now getting speech therapy (actually mostly eating therapy). I've been on a feeding tube for over 3 months and need to re-learn eating plus the operation numbed some nerves/muscles and they need training. So I get 4 or 5 bowls of liquidised things (mostly horrible) each meal time and have to do my best with them. It is a terrible mess — dribbling and spluttering — but there is progress.

Still very tired and only get round to using the computer once a day (hence the slow delay in answering)

…

David

2008-01-08 — Newsletter – Back Alive

2008-01-08T15:13:00.001+01:00

My very dear friends

Some of you have been aware that there was a problem after the operation and that I spent a total of 21 days in intensive care instead of the 2 or 3 expected. Many thanks to my son Chris for finding as many of my email addresses as he could (without access to my computer).

The intensive care experience was very frightening and Chris has given a good indication of why, so for now I'd rather concentrate on the progress since I came back to the normal ward on the 31st.

I had to learn to stand, balance and walk again. That took about 4 days (quicker than I'd feared). It is so good to have a degree of independence. My speech is a bit weird but today I started work with speech therapist who is also helping me on my drinking problem (I dribble all over the place).

I do get tired easily and the computer is more difficult to handle than I'd expected. You can email me, but don't expect a fast response. Telephone is good though. I have my mobile and can receive messages and calls.

For now I just want to thank you all for your messages of love and support. I feel truly honoured and am very, very, grateful.

Much love

David

2008-01-02 — Newsletter from Chris to All

2008-01-02T11:07:00.001+01:00

Dear all,
I knew that my last e-mail was unlikely to have been my last update, but this is just a short message rather than a lengthily update on my Dad. He is in excellent spirits, he is feeling very well, getting good nights sleep now, and very much looking forward to his recovery.

He just wanted me to send out one e-mail to all informing them of the current situation concerning contact/visits. As he is still relatively weak, and needs some time to regain his strength, he would like you to know that although e-mails are always welcome, that he would not be checking his e-mails, nor sending any out for about a week. After having been laid down in bed for 3 weeks he needs a bit of therapy on the walking front ;) This will start tomorrow - it shouldn't take long really, maybe 3 or 4 days.

He can however be reached on his mobile phone, best is to send messages (please leave your name in case he hasn't got your number).

He is able to speak, but with the bottom front 6 teeth gone, it can be tricky to understand some words. So calling is do-able, he is happy to talk, I guess it's also training for him, but be warned; for some people it might be hard to make out what he's saying…

With visits, he is happy to have visitors, but for this first week it would be best to keep it minimal (while he regains strength/mobility), and better to send a message beforehand - this way he can 'control' the flow so to speak.

Other than that, he sends his love to everyone, wishes all a Happy New Year and most of all thanks everyone for all the support.

Cheers,

Chris

2007-12-31 — Newsletter from Chris to All

2007-12-31T21:52:00.002+01:00

Dear All,

Once again I take the opportunity to send out my final update on my Father. It is December 31st, and yes, I am at work. Hopefully we will be let out of here at 13:00, although rumours are such that we might have to work the full day! I'm hoping not.

I send my last update with a smile on my face, and a sense of huge relief. It has now been 1 day short of 3 weeks since my Dad underwent surgery, and has spent these last 20 days in intensive care. The first week, he spent sleeping; The second week, a rollercoaster ride; The third week, getting back on the road to good health.

The 25th, Christmas Day, was a decisive day in my Dads recovery. He had successfully gone through the stages of confusion, tiredness, panic and many more, but on this day he informed my Sister and I that he was now a new man, that he was ready to move on and get better. This was a good day for the family, it meant that the medication he was on was lessened and he was much more aware of everything. I unfortunately managed to catch a cold on Christmas day, and with intensive care it is not permitted really to visit when ill, the risk of infecting others is too great. My Sister did go visit on boxing day, but this was her last visit as her & Ben had to depart to the UK early the next morning. The 27th, 28th, 29th, & 30th my Dad spent alone. I would call everyday and pass messages onto the nurses to forward onto my dad, informing him of the unfortunate situation with not being able to visit. I'm sure he understood, but would have never the less loved some company.

Anyhow, to cut the story short, today they have decided that my Dad is fit to leave the intensive care unit and will be moved out at 11:00. His lungs are much better and his breathing and other vital signs have much improved. They will move him back up to the 18th floor where he used to be (for those that had visited during his therapy) but for how long he will remain there I'm not sure.

It's good news for my Dad has he will now be open for visitors. He'll be out of a room filled with loud peeping machines and hopefully have a more comfortable stay now. I will be going today after work, I'm hoping I'll be there at 14:00 (depending on when they let us out of here). Hopefully we can set up his computer with internet access and he will be able to send out his message(s), and inform you all of his journey from his perspective.

This should be my last update (definitely the last for 2007), it has been quite a privilege keeping so many of you concerned friends of my Dad informed and posted on his developments, and I thank you all for your well wishes, your wonderful and kind words and let me take this opportunity now to wish you all a Happy New Year, may 2008 be a prosperous year, filled with health and happiness for you all!

With Best Regards,

Family White.

2007-12-24 — Newsletter from Chris to All

2007-12-24T21:49:00.002+01:00

Dear All,

I take this opportunity, being perhaps one of only a handful of staff members left in the VIC on Christmas Eve with really not much work to be done at all, to send out a further update on my Dads situation as it is now.

I must first say that it has, since my last update, been somewhat of a rollercoaster ride for us, and I think that could be putting it lightly when viewing it from my Dads perspective. I think he will perhaps describe it as having been to hell and back, and perhaps more than just the once. A negative start to an update, but I can assure you that although I start negatively that in the big picture things are looking positive.

It's hard to sometimes put things in an understandable order, so I will try to keep it to the point. In my last update there were hopes of my Dad being out of intensive care by the time my sister arrives on Friday the 21st (1 or 2 days the doctors said, and the phrase '1 or 2 days' is becoming an all to familiar one to me now). He is still in intensive care. It has now been 13 days and from what the doctor told me yesterday he could still be in intensive care for a further '1 or 2 days…'.

Day by Day;

Thursday:

It was decided that my Dad should come off the breathing aid, unfortunately he was not ready, so they had to put him on some other type of breathing aid that pressurises the lungs, so when I saw him that afternoon, he looked very distressed. He had what appeared to be a special space helmet around his head that pumps oxygen and pressurises the lungs. With this contraption on is head it meant that because he no longer had the breathing tube through the nose and down the throat he was able to try speak. That was nice. He wasn't very clear, but with practice that would come. His words though where not words of happiness and joy, he was very distressed. Since his awakening on Tuesday he apparently had had no sleep. From one extreme to the other it would appear. For him, a nightmare, he looked exhausted, he was exhausted, but his body rejected sleep. This, according to the professionals is completely normal, it is a type of withdrawal from the previous 7 days induced sleep. The body is trying to regulate itself, but for my Dad this of course meant nothing. He wanted desperately to go back to sleep.

Friday:

Because the pressurised helmet was not working, they had to put my Dad back onto the original breathing aid, which meant putting this tube back through the nose and down the throat, by no means a pleasant experience. This was done in the morning. My Sister and I arrived at 14:00 that day, and of course an emotional visit as it was my Sisters first. Dad was awake, and although extremely confused, tears expressed his joy that Sarah had arrived. He had also managed to get some sleep which was quite evident.

As speaking was no longer an option, we resorted to pad and paper, which he has now mastered. This is where we understood exactly how he was doing. I don't think anyone other than those who have been through such an ordeal will understand it, but it's extremely hard to have to convince someone that they are alive and not dead, or that they are awake and not in a coma, or that they are sane and not mad. But these are all questions he was asking. Tough on a first visit for Sarah. I think slowly though, through that visit he started really understanding himself where he was, why and that it was a matter of recovery.

Saturday & Sunday:

These two days showed marked improvement. More so from the mental side of things. He is still confused at times, he will wake up in panic, but in general, when Sarah and I are there he is calm, and we just spend the visiting hours communication with him. It is now evident that he is very bored. We have been given special permission to have his laptop in there with him. He now has books, his iPod amongst other items to make him pass the time more easily. I think these are more for his comfort, because the effort it takes to use them is exhausting, but I think knowing they are there gives him that much more motivation perhaps.

All in all, although his lungs are healing very slowly, they are healing and it really is just a matter of time until they can move him up to his own room again. He now knows this. His wounds from the operation are in excellent shape according to the doctors. He is able to smile, and has not lost his humour. He also questions why the are no visitors… I have told him that I'm sure there will be, but he has to wait until he's out of intensive care.

He has asked us to pass on his love to all. He knows there are lots of people out there thinking of him, praying for him, and he appreciates it. He looks forward to seeing you when he is healthy, and is looking forward to visitors as well.

A special note; Don & Lucille, whom many of you might know, have been extremely supportive not only for my Dad but also for Sarah and Me. My Dad really appreciates everyone's support, but I think Don & Lucille in particular. He had requested that they visit, and we managed to squeeze them both in on our Sunday visit. I think this was something my father really appreciated, and Sarah & I were pleased they could make it too. Like I said though, visits are easier to organise when he's out of intensive care, so he knows that for the rest he’ll have to wait.

From Sarah and myself, we wish you all the best, enjoy the holidays, and thank you all for your support.

Christopher.

2007-12-19 — Newsletter from Chris to All

2007-12-19T21:41:00.003+01:00

Dear All,

I take this opportunity to 'Reply All' to David F's 'Seasons Greetings', I didn't have the distribution list before hand, and so have only kept those people updated who have contacted me via E-mail or Phone.

I know that my Dad had kept all of you in the Cinema Club informed to as his development, so I hope most of you will be happy to receive a further update from me now, if there are others who are not on this list that you feel might want to know, please by all means forward this message onto them.

I think you all know that last Tuesday (11th) he underwent the 8-9 hour surgery (Originally scheduled for Wednesday but they pulled it forward a day…) to A) Remove the site of the tumour, and B) To have the lymph glands from the upper neck removed. The operation was a success. They also only removed one of his lymph glands (left side) so the scar my Dad kept talking about will be halved. With the operation being a success, the Professor informed me that the induced sleep he was in should really only last 2 or 3 days, depending on how fast his swelling goes down.

Unfortunately, my Dad had developed a lung infection & fever during that night, and this really slowed everything down. With the lung infection, weakening his lungs, he had to be put on a respirator to aid the breathing. It also slowed down the overall recovery and meant an increased time in the induced sleep. Over the next couple days the treatment for his lung infection was showing positive signs, and the doctors decided to reduce the amount of breathing aid over a couple days to get my Dad to start doing the work himself again. They also started reducing the medication keeping him in his sleep.

So, yesterday, Tuesday the 18th, after 168 Hours, or 7 Days of induced sleep, my Dad woke up. I'm sure he must have been as confused as can be, and perhaps a bit panicked. The nurses strapped his arms to the bed because they feared he might accidentally pull on some of the tubes that he is still connected to. This of course will add to his discomfort. When I appeared at 18:00 last night, he was awake with eyes wide open, and I think the sight of a familiar face sent him into what appeared to be a frenzy - of course he isn't able to speak, arms are strapped, so it just looked like he was in discomfort - but what it was, in my humble opinion, was sheer relief, followed by joy that a recognisable face was there to comfort him and reassure him that he had survived the operation and that family was around

He certainly was wanting to communicate, but with his tongue still being swollen, this won't be an option for him for the time being, but he is fully functional in the upstairs department, and responds to question with nodding the head for 'yes', and shaking the head for 'no'. Through this I established that he is in no pain, but is not as comfortable as he would like to be, especially with the arms being restricted. The nurses and doctors there take care of him very well, and keep him informed so he knows why he is strapped down, and I think with me echoing their words he feels reassured that everything is fine, and moving forward the way it should be.

There was an odd moment a couple minutes into the attempted hugs from my Dad (very difficult as he is laid down flat and 'shackled'), when he started shaking his left hand, without pause, and seemed to be shaking/pointing at his stomach. I asked; "What - pain in your stomach?", 'No' he shook his head. I asked: "Are you hungry", 'No' he shook his head. After a couple 'No's" I got the doctor. She informed me that he had been doing this all day, and that they too had asked the same questions to which he answered 'No' every time. Then it dawned upon me, he's trying to speak, that's not working… I asked: "Hey - do you want a pen?", to which his head started nodding 'YES' with a sign of relief on his face that we finally understood him :)

So, out came the pen and paper, but unfortunately we produced nothing more than Morse Code…(I can't read Morse Code) This is because he is flat on his back, arms strapped, and cannot see the paper - never the less, it's a great sign.

Just a note, since he was admitted into hospital for the operation, I've had many e-mails, and phone calls, people stopping me in corridors wishing him well, and every time a new name would contact me I added the names onto an every growing list that I carried on me, which I read out to him yesterday, it was my 'Well Wishers List'; I think he was overwhelmed, and if he could I'm sure he would have shed a tear - he really does appreciate all the support and thoughts going out to him, I think it's always nice to know that people are thinking of you when in times of hardship. Thank you all.

Today they will complete the final stages of stopping the breathing aid (assuming he reacts well to it) and after that it should be 2 or so days until he can leave intensive care, and reside in his old room on a normal ward. Hopefully by Friday - this is when my little Sister arrives from the UK, so it will be very nice for her if my Dad is able to at least communicate with pen and paper, and probably a lot nicer than having to visit the intensive care ward. Fingers crossed.

So, he's survived the operation, and all he can do now is rest and recover. He knows this will take some time, but I think he's ready for the next stage!

As far as visitors go, it is still restricted to family members, and whilst he can't speak I think he will most likely prefer it to stay with family visits until such time when he is ready. I'm sure that once he is in his room out of intensive care, and has regained some strength, he will be back online, or reachable through SMS. Until then, I remain the contact person for any questions you might have.

With best regards, wishing you all Happy Holidays and a Happy New Year!

Christopher

2007-12-17 (approx) — Email from Chris to Sarah

2007-12-17T15:21:00.002+01:00

This is an email sent by Chris (my son) to his sister warning her about what to expect when she came to Vienna for Christmas and to visit me. A friend was sent a copy and she sent it on to me about the time I got out of hospital. I was so touched by it that I include it here (with his permission).

Morning little Sister,

So, I'm back with an update on our old man. I went yesterday to visit between 18:00 - 19:00. It was definitely a weird experience being in intensive care. I was prepared in terms of Dad being swollen and what not, and so it wasn't so bad when I actually got there, of course seeing your Dad hooked up to countless machines all beeping and making noises while he is fast asleep can be emotional, but I held it together ;).

There are some things I need to make clear though so let me try and order this somehow. Basically Dad underwent surgery on the Tuesday. It was by no means a light operation. 8/9 hours comprising of 2 operations. 1 was to remove the area where the tumour was in his mouth, and the second to take out the lymph glands in the upper region of his neck. They did not take out both top lymph glands, but instead only the one on his left side where they found this speckle. There was actually a mini 3rd operation where they have taken skin/muscle from his left arm to replace it on either his neck or mouth - I'm not quite sure which. In terms of the operation(s) they went very smoothly, and the doctors are pleased with the result. According to everything they have told me, things are going how they should.

Now, just to make this point clear, cause I wasn't aware of it, but it seems logical now. When in intensive care, they keep you asleep. There is no waking up and then dozing off again, they keep you in a 'medically induced coma', a permanent sleep for your duration in intensive care. The reasons for this are that after the operation, especially the removal of his gland, there is swelling, and this is not comfortable, and probably painful and there's tubes and things that are doing jobs that require you to be asleep. So they keep you asleep until swelling is down, and until they think it is clear to wake you up. This is estimated to take about 2 or 3 days. When they decide to wake you up, they don't click their fingers mind, and then you're up, it takes a period of several days apparently, where they slowly reduce the drugs that keep you sleeping, so it's a slow process.

This being said, although it is most weird, and a very strange situation for us to be in - with Dad just being in a 'coma' - it is actually a good thing. Dad is sleeping. He is feeling no pain, and during these days in the 'coma' he is recovering, and when he does wake, those days will be behind him. So don't worry about the 'coma', or better said 'induced sleep'. It is better this way.

Like I said, 2 to 3 days this usually takes for swelling and what not, there was/is however a slight set back now. Dad has generally weak lungs, and what has happened is he has developed an infection. This is nothing to worry about, it is something that does happen, and is treatable, but the implications are that the process is slowed down, and the outcome of that - is a prolonged period in the 'induced sleep'. The doctor I was speaking with yesterday said that we should understand that this will most likely add another 5 days of induced sleep (might be more depending on how things develop). It sounds awful, but these people know what they are doing, and again, from Dads point of view he is sleeping, he is in no pain, and these extra days are days he doesn't have to deal with when awake. He is healing all the time.

I hope this is not worrying you, I know you'd rather be here than there, but there's nothing we can do but wait for the experts (and Dad) to do the best job they can. In all likely hood though, in fact I think it's almost a certainty, you need to know that Dad will not be able to come out on the 25th for this day visit that was an earlier option. I hope that by that time he will at least be awake. Visiting is not a problem, it is currently restricted to only family and limited times during the day, and a maximum of 2 people. So naturally I'll be there with you. Even on the days before Christmas.

Now, just an update from me when I was there last night, like I said above I was prepared for the encounter, and as it turned out it wasn't so bad. He still looks like Dad ;) and the swelling etc is not at all bad. The thing that catches your eye is just the sheer amount of machinery surrounding him. Computers and tubes and just and awful lot of noise. I always imagined it to be somewhat quieter, but there's just constant beeping and all sorts of noises. I did talk to him for a while, sent him all our love and well wishes from the many people who have been calling me and e-mailing me for updates so it will be interesting to see if he remembers any of it when he wakes. You have to speak a little louder though because of the noise. The doctors and staff there are friendly, and of course considerate to the fact that it's pretty emotional, so that's nice. He is being looked after well.

The results from the lymph gland will hopefully be with us next week, but to be honest, this is something we can deal with later, the main thing now, and for the next 3-4 weeks will be concentrating on Dads recovery.

I spoke with Uncle Michael last night, and he will be calling you this evening to have a friendly chat - he's been good on the phone! Mum will call as per usual on Sunday I believe :)

Oh yeah, I call the intensive care unit every morning just to find out how his night was, make sure that everything is still going the way it should, and in any case they have my number and mums number if there was ever to be anything that we should know.

Much Love, and looking forward to seeing you and Ben soon!

You can call anytime!

Chris

2007-12-11 — Calendar entry – the Operation

2007-12-11T08:59:00.000+01:00

The operation was scheduled for about 8:00 in the morning.

I remember being wheeled into this enormous waiting room – there must have been 30 odd people each in their own bed all parked near each other and all, or almost all, with drips and things connected. The individual anaesthetists came and chatted to their specific patients and shortly after that they were wheeled through one of two (I think) large doors.

I was about last. When it came to my turn I remember just after the doors I was transferred onto a different bed and wheeled into a new, but very small waiting room. And to be honest I don't remember anything else

2007-12-10 — Newsletter – an even shorter note

2007-12-10T15:30:00.001+01:00

Dear All

Am now checked in to my room (Station 18D (Green) room 2).

The main news is that the operation has been pushed forward to tomorrow. Which is good as there is already going to be enough waiting about today.

Chris will be phoned after it is over, so he will have the latest news. The ward will presumably also have information. I will be back on the ward one or two days after the operation, all things being well

Filled in a million forms, had talks with anaesthetists and ordinary doctors, have given blood, and have had my mouth shown to a group of 20 students, so things are happening.

love to you all

David

2007-12-05 — Newsletter – A short note

2007-12-05T15:31:00.001+01:00

Dear All

Just a short note to say that the tests etc show me to be in good shape and the operation will go ahead on Wednesday 12th December. I have to go into hospital on the Monday (to rest they said) and will be in hospital for about 3 weeks.

The operation will apparently last 8 to 9 hours — a long time for a 64 year-old surgeon to work you'd think — but they assure me I'll be asleep for it all.

I will have email in hospital but might not be too active on that front for a while. Right now am feeling a bit snowed under with things that need to be done before Xmas, and so take this opportunity to wish you all a Merry Christmas and a Happy New Year.

Your well-wishes and prayers have meant a lot to me over the last few months and I feel confidant that I will be again on top of the world in 2008 (I've already lost 13 very much unwanted kilos — about 29 lbs for you imperial types, and will soon apparently have a dashing looking scar on my throat to enhance my looks).

For those of you in Vienna, don't forget the Bazaar this Saturday at the Austria Center. I will be performing my last public functions of the year then (official photographer and tombola clerk) and you can even buy a poster (called "Faces") featuring some of my pictures from last year. All profits from the Bazaar go to children's charities

love to you all

David

2007-11-29 — Newsletter — “News from the Nosefeeder”

2007-11-29T15:33:00.003+01:00

Dear All

It's a long time since I wrote one of these group letters and thought you deserve an update. Those of you who I meet or talk with more regularly can just ignore it.

The big problem last time I wrote were the ulcers and so on in my mouth and also the disturbed nights. The good news is that things are very much better on both these fronts. Most of the sores are gone (a few isolated ones remain to grumble about). My throat is now very sore (this is a new one to replace the other problem!) but seems to be slowly getting better. My nights are very much better. Perhaps being woken 2 or 3 times instead of the 8 to 10 of before. I still need one or two day time naps but this is no problem.

I have much more energy and am getting things done. I get out more and am back to driving. With one exception, I am in really good shape.

The exception is feeding. I am still on the drip feed — this was necessary until very recently but perhaps is not needed now. But I seem to have a mental aversion to the food I try. The extreme dryness of my mouth is a factor in this — some foods are impossible — but it is also a kind of security thing. I am ok with the drip and seem averse to change! Anyway am working on this (today am cooking a minestrone and also a chicken soup for the freezer to try out) .

In general I am optimistic and quite happy but at times the length of this process does get me down. It has been almost 3 months I think — certainly 2 months since I last ate properly — and it is never ending. But I'm able to shake these times off as I really am so much better and life is very tolerable.

Tomorrow I go for tests (extracting blood, taking the piss, and X-raying) and on Wednesday (5th Dec) the final decision will be made as whether to operate on the 12th or to postpone a while. Will let you know what the decision is. Part of me wants to get it over and part would like to have Christmas with the family before I lose teeth and have all the other indignities performed on me!

Beautiful weather here in Vienna, cold but blue skies — life is good

love to all of you

David

2007-11-23 — Email extract

2007-11-23T15:35:00.002+01:00

…

The operation is not scheduled until 12 December. End of next week I start have tests and X-rays to see I am fit for it (in particular for the anaesthetic) and the final decision is to be made on the 5th.

Still not eating except through the tube but things are very much better. Sleeping quite well now and the overall pain has gone. Just enough to make eating real food unpleasant though I can taste things properly which is a relief.

Needing to naps often in the day, usually 3 times for an hour or two which taken with now 10 hours at night means I have very short day.

…

David

2007-10-28 — Newsletter

2007-10-28T15:42:00.002+01:00

Dear All

I am now at home with the radiation and chemo-therapy finished at last (finished two weeks ago). What has still not finished is the side effects from those two therapies. The theory was that I would be in hospital just for the first week of the 5 week treatment (the week with the chemo) and then would complete the therapy as an out patient. In reality the ulcers, sore and general nastiness that affected my mouth meant that I couldn't eat or drink and I got in a really bad state after my first week at home and so I returned to hospital for another 4 weeks or so to be on a drip feed and to also get imbalances in my blood sorted out

I'm still on the feed, though at home. My mouth is starting to heal and I think I will able to eat normally in a week or so. Should all go well then they will operate to remove the site of tumour on 4th December.

I said the site of the tumour because while the therapies did collateral damage, they also succeeded magnificently in disappearing the tumour! I am a 'good responder' apparently.

I still can't talk properly or at least not for long, but can get out and about and am generally in good spirits. Am not driving yet but living in Vienna this is not a big problem! Am planning getting back to work with my camera soon — my daily photo site had a full month's lack of addition but is starting up again though it is as yet just with photos taken before I was in hospital — am plotting how to afford a new (and expensive) camera as my Xmas present to myself so you can see I am definitely on the way to recovery

Many thanks for your good wishes

David

2007-10-21 — Newsletter

2007-10-21T15:46:00.002+02:00

Dear All,

I got home on Thursday. To be honest I was a little dreading that — firstly the leaving of the security of the hospital seemed a bit scary (rather like the problem long-term prisoners have on being released) and secondly the actual getting home (I still feel quite weak) seemed an enormous task. Chris was a tower of strength for me in the second thing. Carried all the heavy stuff, was extremely solicitous and I felt really 'taken care' of. I am very, very lucky to have two children (young confident adults actually) who are such a support to me. Margaret had got my shopping in for me and so things went really well

It is a little more difficult being at home — the feeding through the tube takes time where I have to be stuck in one place (surrounded by phones, remotes, water, tissues all of which must be in reach for the nearly 2 hours it takes to get a bag of feed dripped) and so I have plan other things much more carefully — and there are more things to do than in hospital — pay bills, etc — thank God for the Internet!

My mouth is still the pits. Ulcers and sores still come and go. Nights are unpleasant — very broken with an hour sleep at a time usually the longest period I get.

But the good news — there is a delay in the side effects of the radiation and this should be coming to an end around the end of the week so things should get better soonish. Once I can eat normally — even if it is soup and mush at first the it all improves. And on the tumour side — at the last consultation the radiation doctor said it had gone. I asked "completely?" and she said she could prod around to confirm but that would be very painful so we decided to give with the visual result — the area will be removed by surgery anyway.

I am impatient, uncomfortable but optimistic and the light at the end of the tunnel cannot be far.

Of so much importance to me has been your prayers, well wishes, hospital visits, emails, phone calls which have been of great help to me — many, many thanks

I finish with a note of advice — If you have to spend time in an Austrian hospital bring a supply of soft toilet paper — the local issue tissue will wipe the smile of your face otherwise

love and best wishes

David

2007-10-18 – Calendar entry – Back home

2007-10-18T09:06:00.000+02:00

Well, at last, I'm home. Chris took time off work and came in the taxi with me. Needed help to carry the case, laptop and all the stuff I'd gathered over the last few weeks. He was a tower of strength.

From now until the operation I remain with the tube down my nose and 'feeding' off bags of 'food' which I get from the chemist. I setup a clamp on a bookshelf, moved an armchair near to it and settle myself three times a day for a slow leisurely 'meal'. I have to try to remember to bring phones and everything I might need and put them within reach as unlike the hospital where the bag was held in a stand on wheels, here at home it is more fixed.

2007-10-13 — Newsletter

2007-10-13T15:49:00.001+02:00

Dear All,

Well radiation is over — the last session was yesterday. Of course then last night a new crop of assorted ulcers and assorted nasties sprung up to celebrate! It will likely take a week or so for the last effects of radiation to filter through and then things will definitely improve. You can imagine how much I'm looking forward to that!

Seem to be losing hair — close inspection (which I try to avoid doing much) reveals some bald patches but they are at the moment hidden by hair from higher up falling over them. A sort of 'fall-over' rather than a 'comb-over' and with a little more success in concealment (he tries to persuade himself).

But of good news there is still plenty... if my red blood cell count improves by Wednesday (which they seem to think it will and of course tests will prove) then I will go home on Thursday. Even if I can't eat properly — I will do the tube feeding at home. It will be nice to have a comfy chair and all my old familiar things! And I've lost a few kilos (guessing about 7) which still leaves a comfortable reserve for winter and the operations but is a much more comfortable weight.

The tumour itself has shrunk considerably and encapsulated itself — at least that's what I understand (my medical German improves in leaps and bounds but still has a way to go) — but whatever, the doctors are always extremely pleased with its progress (regress?)

Am surrounded by love and friendship from family and friends and this has helped me much and although there are periods of discomfort still there is nothing that I can't handle at the moment and, as I said before, it will all improve soon.

Much love to all of you, my good friends

David

2007-10-12 — Calendar entry — last radiation session

2007-10-12T09:11:00.000+02:00

Today is the last radiation session. Had setup a countdown spreadsheet on my laptop to highlight the remaining number of sessions — as if I need reminding — there is not much responsibility on me here and not a lot to concentrate on!

Depending on how the blood tests go I should be able to go home sometime next week.

2007-10-08 — Newsletter

2007-10-08T15:51:00.001+02:00

Dear All,

Sorry to do this bulk mail to you all instead of individual emails, but I am a bit low on energy and there are so many of you good friends.

The good news is that I'm now in the last week of radiation. Just four more sessions to go. More good news is that the Professor peered into my mouth this morning and said the tumour was "fast weg" ("almost gone").

Not quite such good news is that although the ulcers etc (technical name mucositis) are less and less painful eating is still not possible so I remain on the feeding through nose tube method. My blood counts keep giving them problems too — first T-cells and white cells were low but now those have straightened out and the red cell count is too low. They are deciding in the next day whether I need transfusions or such like. None of this is dangerous but it might well delay my release from hospital. I am expecting to be in next week at least but it all depends

I now get very tired and lose concentration (so sleep a lot) — this is likely due to the red cells. But I'm in a safe place

Nothing is as bad as the time two weeks ago and all this I can handle without problem even though it is not pleasant.

I have had so many phone calls, emails and visits — it is so encouraging to me and really does help in keeping my spirits up. There are so many good people and I do so appreciate them all.

That's more words than the new slowed down David (whose beard has stopped growing and seems to be losing hair — though not yet noticeable except on my pillow) can normally manage in a day, so...

I'll end up with thanking you all again for your love and affection

David

2007-10-05 — Newsletter — to Vienna AA members

2007-10-05T15:53:00.001+02:00

Dear All,

I've tried to find all the Vienna Fellowship email addresses in my address book — I know I don't have all and apologise to those I've missed.

I would like to thank you all so very much for the concern and love you have shown to me whilst I've been in hospital. Your phone calls , emails and visits have meant very much to me — yesterday the meeting was brought to me in my room and that was something very special

It is humbling and very comforting to realise that I am truly in a loving fellowship

The radiation treatment continues but will be finished on Friday next week. Then the mess in my mouth should start clearing and everything will improve. It is still too painful to eat and so I continue on this feeding tube through my nose direct into the stomach — which is really nowhere near as uncomfortable as I'd thought it might be.

Am very much looking forward to seeing you all soon in our natural habitat — a meeting room!

love and best wishes to you all

David

2007-10-03 — Newsletter

2007-10-03T15:54:00.001+02:00

Dear All,

I can definitely see an end to this now. Plus the pain in my mouth is not as bad as last week. Still there and still unpleasant but definitely improved. Found I'm getting tired quite easily — there is no way I could have done any work at the same time as this. My blood cell counts are not good (low white cells) and so they are giving me injections to sort that out — nothing to worry about but needs attention. All of which confirms that I am better off in hospital.

My birthday was really pleasant. Strangely, considering the circumstances, one of the best I've had for a while. I got a number of cards. I had mentioned it was my birthday to the Professor (a nice old guy — probably younger than me thinking about it — though a bit stiff and formal) — and he had a little chat and unwound quite a lot. Then after 'lunch' he came back on his own with a beautiful bunch of flowers!

Then the family, Chris, Sarah and Margaret, all arrived. Chris bundled me into the loo to wait while they set up and then let me out. They'd tied a helium Happy Birthday balloon to the bed and stuck a big Happy Birthday banner across the window. They'd got a little bamboo tree in a pot and pinned 60 instant lottery tickets to it (which yielded prizes of €22)! And there were presents.

They'd put a lot of effort into it all and it was really nice. Chris and Margaret stayed for an hour and Sarah staying for another one (chess — I had to resign so the series is 2-1 to Sarah — honestly, children taking advantage of sick and elderly parents!). Sarah goes back early afternoon today so I won't see her — I'd thought it'd be a bit of a waste of money her coming over with me here but it proved delightful and I'm so glad she did.

Incidentally the radiation has stopped my beard hair growing (will be temporary apparently) so the morning ritual is shorter — and somewhat strange after so many years.

David

2007-10-02 — Calendar Entry — my Birthday

2007-10-02T08:55:00.000+02:00

Well today is my 60^th birthday. Am spending it in hospital which is not the way I planned it earlier in the year. Actually I didn't really have that many plans for an event so can't really grumble.

The family — Margaret, Chris and Sarah laid on a lovely surprise (details in the next post), and though I am not in ideal circumstances nor in an ideal place it was nevertheless one of the nicest birthdays I can remember.

2007-09-28 to 2007-10-03 — Calendar entry — Sarah visits Vienna

2007-09-28T08:54:00.000+02:00

What is a shame is that Sarah is in Vienna and here I am in hospital and not able to see her as much as I'd like. She arrived on Friday (28^th September) and leaves on the 3^rd — the day after my birthday. When this booked it was thought that I'd be having out-patient radiation treatment — so we'd have been able to spend quite a bit of time together. As it is she visits but it isn't the same — though much better than nothing. We play chess — when I lose I console myself that firstly I taught her, and obviously did that well and secondly that I am a poorly man who is currently not at the height of my powers!

2007-09-26 — Newsletter — Tumour progress report

2007-09-26T16:14:00.001+02:00

Dear All,

Was thinking about the last email I broadcast, wondering if I exaggerated for sympathy, but thought if anything it was all much worse.

This week I’m back in hospital, being fed through the nose and am starting to grumble about little things so things are definitely getting better!

Last week I could not see how it could be possible to get through the remaining treatment — this week I know I can do it with all the help I can get here.

So now the problem remains the pain in my mouth. One of the irritations is that it changes every day. Some symptoms persevere, some go away but always something new takes its place. Currently it’s my tongue bleeding.

A morphine based gel was made for me but it doesn’t seem that effective. I have to smear it on affected areas and that’s effort in itself unless I use their ‘patent’ mouthwash first.

This mouthwash has been with me from the first day — comes in enormous bottles when you get it on prescription for home. It is the only thing that seems to help. Problem is that you should take it between 3 and 9 times a day (everyone says something different) and I find it works for about an hour…

And last night’s (Tuesday’s) problem — diarrhoea. About 1:00 am and of course my underpants and pyjama bottoms affected. Not much but enough for me to plot ways of ‘getting away’ with it. I worried about getting new pyjamas, telling people — all good ‘early hours of the morning’ problems that seem immense, insoluble and very important and are of course nothing of the sort.

I was worried about this damn disease taking away my dignity, forgetting that only I can take it away.

David

2007-09-24 — Newsletter — Back in hospital plus David’s unpleasant week

2007-09-24T16:15:00.002+02:00

Dear All

Am sending a group letter as you're at different stages of the 'knowledge' (hence the detail) and all of you have been so kind with help and well wishes

I was released from hospital last Monday (17th) having completed the week of chemo and radiation together. There were minor side effects but from then it all went quickly downhill. I think I can safely say that this was been one of the worst — almost certainly the absolute worst weeks of my life. Every day the symptoms got worse. Ulcers sprung up in my mouth. Some going away after a day or so but always some new to take its place. Saturday it was difficult to speak, Sunday it actually hurt to do so. Sore throat came and stays. I registered the problem Thursday and got a useless painkiller...

I couldn't eat much at the beginning but by Sunday it was impossible to even drink.

I spent quite a lot of each day just huddled up in bed.

Anyway today I had an appointment with 'my Professor' at the hospital and he whisked me back in as in-patient. I was put on two drips (one in a vein, the other a tube down my nose into my stomach — I have an elephant trunk nose, albeit an thin elegant one). My evening meal was chocolate pasta down a tube if I heard right.

Anyway I am really happy to be under safe hands here. At the worst point I was considering close to begging them to take me back. This not needed as the Prof said immediately I must come in — at which point I burst into tears which shows how far from the normal Strong-Silent-David you all know I'd gone

I'd hoped this would happen and so had made piles and lists for Margaret (for those who don't know of her, she is my ex-wife who lives in the same block of flats and who has been an enormous help throughout all this) for packing and Chris (son and another tower of strength) brought it all in tonight — including my laptop hence this message.

A pain specialist has been to see me and I'm getting a morphine based paste to use.

The Prof says that reaction varies from virtual none to extreme like mine. Those who have the least reaction have the downside that the tumour also ignores it. Mine tumour has apparently got significantly smaller.

So the radiation goes on (my blood work has gone haywire and there is a small chance this may make them stop the treatment which they are really hoping not to have to do) but I stay as an in-patient.

I still have the pain but the infusions and the fact I can now just press a button for help has improved my spirits greatly.

Many thanks to all of you for the help you given me with all your thoughts and prayers and emails of support

David

2007-09-17 — Calendar entry — I go home

2007-09-17T08:30:00.000+02:00

As expected I was sent home today after the radiation session was done. So for the next four weeks the plan is that I come in 5 days a week for radiation as an out-patient. Takes a bit over an hour travel time in each direction so this cramps my daily schedules somewhat — but then what else do I really have to do!

2007-09-16 — Newsletter

2007-09-16T15:58:00.005+02:00

Dear All,

Well the chemo part is over and it looks almost certain that I’ll be going home tomorrow after my regular (for the next 4 weeks) midday radiation session.

The last chemo bag (there were a total of five 500 ml bags) finished about 15:00 Saturday. It should have been earlier but the drip feed machine was inaccurate. And of course I calculated it all and made a spreadsheet to chart progress — which the doctors and nurses ignored of course. [It was set to 24 ml per hour but was actually operating at about 19 — anyway end of geek stuff, but when there is not that much to do it is easy to get obsessed].

So I was free of the bag and trolley and could go and buy edible food from the lobby and could bring up yoghurts and things.

The problems have been with side effects — the chemo gives me nausea spells which are not too bad and should reduce now. But the radiation is hurting the inside of my mouth — it is very dry as saliva glands react faster to the radiation than the tumour and on Friday I got an ulcer and today my tongue is red and sore. This is all unpleasant — it is not an extreme problem and I can put up with it but it makes it difficult to eat much of the stuff they bring — fairly dry bread, schnitzels, vinegary salads. So eating has been difficult but when I’m home I’m going to do pasta with ‘gentle’ sauces — so that problem should be minimised.

They took blood samples yesterday and today (these are the deciding factor in whether I can go home Monday) and the duty doctors said the results were excellent so they it almost certain for Monday but the final decision is made by the Professor! But they removed the catheter thing with all its dangling tap things (3 of them) from under my collar bone this morning. That was done by the two young female identical twin doctors who work on the ward.

So, anyway the chemo is over and this hospital stay nearly gone. To come is 4 more weeks of radiation, 8 weeks of recovery from that and then the operation. The operation will be bigger than I originally understood — they remove the upper set of lymph glands in my throat (the Professor made a ‘cutting my throat’ gesture to indicate how they will do this). If those lymph glands are clean then that is it, but if there is anything malignant then they operate a second time to remove the lower set of lymph glands. There is apparently a microscopic ‘fleck’ visibly on the scans and so the upper glands are removed and it will be analysed.

Had one bout of disbelief last night — a “how can this be happening to me” experience but otherwise am in good morale considering and will be a lot better when I get home! It is not that comfortable here and I miss my comfy things!

David

2007-09-11 — Newsletter — Tumour progress report

2007-09-11T14:27:00.000+02:00

Dear All,

The short news is that the tumour has not spread anywhere else and has not grown in the 5 weeks or so since it was detected. This is good as it means that the long-term prognosis is good

The long news follows. It is long basically because I've certainly got time on my hands!

Well the treatment has started. After they found the tumour there was a period of about 4 weeks of scans and tests. I've had 'nuclear' scans (a full body bone scan which shows my skeleton and which I want to copy for my web-site, and a 3D scan of my head which was extremely claustrophobic and unpleasant). They've done X-rays and CAT scans and blood tests galore. They made a mask (Hannibal Lector style) of my face and then did a simulation of the radiation with the mask and a CAT scan so as to be able to aim the radiation device accurately. The made teeth and gum shields for wearing during the radiation and also for use as an 'applicator' for a tooth gel to minimise tooth damage.

I was in hospital for two nights while they did an operation to tattoo all round the tumour so as to know where it was after it is shrunk by the radiation therapy. That was a full anaesthetic job.

There are several hospital departments involved (this is the main Vienna hospital) and everyone is nice and seems competent but their coordination is not so good so I ended up making much more visits than strictly necessary (at 90 minutes travel time each way).

Now I'm in the hospital for a week while they do the first week of treatment. This is radiation therapy (two bursts of about 40 seconds each) coupled with chemo-therapy. It is the chemo that is the reason that I have to be an in-patient — it's a 24 hour drip feed — removed only for an hour or so while I go for the radiation. There are only 5 days of this but I had to come in a sparrow's fart on the Sunday for a mini-operation to insert the catheter for the chemo under my collar bone and then when the five days of chemo are over they do blood tests and will hold me here a few days more until everything is settled down.

This whole approach is adopted mainly because it has a good success rate but also because it involves lower doses of chemo and radiation. So the side effects should not be too big. They expect none from the chemo but the radiation will cause dry mouth problems and maybe lethargy as it accumulates. I'm not likely to lose hair though my beard hair may stop growing for a few months

I'm feeling fine, though a little bored. But did bring enough books and my laptop — can get internet though rather slowly and can watch DVD's on the laptop so am OK for entertainment. Have my own room and the food is edible (though only just). Feeling restricted as I have to push the drip feed trolley thing around if I want to move more than a couple of feet. It is a powered thing so also have to plug it in — though it has a certain amount of battery power but essentially I'm fairly confined. The feeling of freedom when they disconnect me for a radiation session is amazing (gives me a chance to shower too and visit the hospital shops).

Overall I have confidence in the hospital but it is clear that their priorities are not the same as mine so there is a lot of waiting for things. I'm trying practising serenity and trying not to get exasperated over things which I will never be able to alter!

After this week is over there are four more weeks of radiation therapy (without the chemo) which is done as an out-patient (5 days a week). This should all shrink or even disappear the tumour. Then they wait 6 to 8 weeks and then operate to cut out the area where it was (plus a safety margin) — which is why they did the tattoo in the beginning. My first tattoo and nobody can see it and it will end up being cut out.

The operation timing depends on how I react to the radiation but looks like it will be early December. Might be sipping a liquidised Christmas turkey through a straw if there is a delay!

David

2009-09-10 — Calendar entry — first radiation, first chemo

2007-09-10T14:25:00.000+02:00

So, my first day of therapy dawned.

My regular time slot for the radiation appointment was set at about 12:30 — once this time has been set you can't change it. As I remember I was offered this slot and an earlier — about 8:00 slot — which would be fine for while in hospital but not so good for the remaining 4 weeks as an out-patient.

You wait outside the radiation machine room and when your name is called you enter, put your teeth shields on (you carry those with you to and from the radiation) and you lie on the bed of the machine. They put your mask on (they keep this for you — not sure why they couldn't keep the teeth shields also). You also have a rubber sort of door-stopper type of thing to put between your teeth to keep your tongue down flat.

For me the radiation took a couple of minutes for each side — a total of about 5 minutes. However in reality aligning the mask normally took quite a lot longer. Towards the end of the therapy when my mouth was really dry and the teeth shields and the rubber stopper hurt my mouth it seemed much longer.

Anyway when I got back to the ward they started the chemo. The chemo is administrated through a sort of powered drip feed — I assume powered so that the amount of flow can be controlled. Because it is powered it has to be plugged into an electrical connection — though it has a smallish battery for in-between times. It is connected to the catheter thing under my collar bone. It should last about 20 hours giving a short gap each day when I go for the radiation and am also free FREE FREE!

2007-09-09 — Calendar entry — back to 18-Dora, an operation

2007-09-09T14:12:00.002+02:00

So this is a Sunday admission as the radiation and chemo treatment starts on Monday and they have to insert a catheter — not sure if that is what it's called — it's to be a 'permanent' IV just below my collar bone.

I had to arrive at the hospital early and not have anything to eat or drink. I spent a load of time just waiting in my room but at least this time I'd brought loads of books and my laptop computer with some DVDs.

It wasn't until about 16:30 that the thing was done. It was done under a local anaesthetic but done in an operating theatre. The area was sort of screened off and a sheet was over my face making it rather hot and a little claustrophobic.

I hate, really hate, this type of thing. I want to know what is happening and how long it is going to last. I also want to know how long it has being on — this is all a control thing — or rather a feeling that I am not in control — which always makes me nervous. Same thing that makes me dislike dental treatment — not pain but not knowing what is happening to me.

Anyway it probably took about 15 minutes though it seemed longer. I swear the assistant asked if he could do it and the surgeon let him —- but I probably invented that.

2007-09-07— Calendar entry — teeth moulds

2007-09-07T14:10:00.001+02:00

I think they forgot to do this stage at an earlier appointment, but I came in so they could make moulds of my teeth — like the ones dentists make when you are going to have crowns made. It was done by Dr Nell, one the nice friendly doctors from the Cranio-, Maxillofacial and Oral Surgery (Mund-, Kiefer- und Gesichtschirurgie) Department.

The moulds are going to be used to make shields to protect my teeth from the radiation. I was to get to really hate those shields over the next few weeks.

2007-09-06 — Calendar entry — Simulation

2007-09-06T14:09:00.000+02:00

Today the radiation people did a simulation run. As far as I understand this is how it worked. I had the mask on and they had the CT scan in some form in the simulation machine. This machine sent a light (laser perhaps) beam out where on a real radiation machine the radiation particle beam would come. Using the position of the tumour from the CT scan they were able make sure that the beam would precisely aim at the tumour and as little as possible anywhere else.

This is how I think it happened but I didn't ask enough (difficult with the mask on) and my medical and technical German didn't help too much. It didn't seem that important to know all the details.

It seemed a funny combination of really high tech (CT data, lasers) and low tech (a red magic marker was used to mark on the mask where the beam should be focused).

It does show how incredibly technical so much medical treatment is these days.

2007-09-03 — Calendar entry — a mask is made

2007-09-03T14:08:00.000+02:00

Back to the radiation people. First of all a mask was made. A sort of semi-transparent material was warmed up and moulded to my face. The mask has a hole where my mouth is but covers my nose and eyes— though it was possible to see through the mask even though it covered my eyes.

I was going to get to know my mask very well over the next month or two.

They then did another CT scan of my face region.

2007-08-28 — Calendar entry — the Radiation and Chemo Departments

2007-08-28T14:07:00.000+02:00

I had two appointments at the General hospital today — one each with the Department of Radiation and the Chemo-Therapy Department.

I don't remember what happed with the Chemo therapy people and as far as I know I never saw them again.

For the radiation, I met with Dr Stromberger — a very pleasant lady doctor. She explained what would happen before the radiation started and also warned me if some of the possible side-effects.

2007-08-24 — Email Extract

2007-08-24T16:20:00.002+02:00

…

Yes, got back at lunch time yesterday. Saw Professor Ewers when I came round after the anaesthetic — he remembered you. Most of the time though I see his number two — a friendly younger doctor.

So it went well though as soon as they wheeled me back to my room I immediately puked all over myself which was a bit embarrassing. Otherwise the principal problem was boredom. When I'm there for the week (will know the dates next week) I'm taking my laptop, DVDs, my IPod, books, anything! The food is crap too!

But the good news is that all the scans came up negative, meaning that it has not spread at all.

…

2007-08-24 — Newsletter — the first newsletter (to the Cinema Club) — an extract

2007-08-24T14:07:00.001+02:00

This is an extract from the first large distribution email I sent out. I run an English Cinema Club here in Vienna and wanted to share the news with the members (they'd have noticed my somewhat stiff face following the tattooing operation and this was also a way to get that out in the open.

…

We will continue with light-hearted movies (there's no real choice actually) with 'Death at a Funeral'. You can read more about it on our website

On a more serious note, a chance visit to the dentist has quickly led me into a treatment for a malignant tumour in my mouth. The chemo and radiation therapy starts in a week or so and the operation will be in December it seems. The prognosis is good as it was found small and early. The club will continue to operate but Helen might on occasion be your vote gatherer if I'm unable to attend on any particular event.

See you Tuesday

David

2007-08-23 — Calendar entry — back home

2007-08-23T14:04:00.000+02:00

I was released from the hospital around noon. The whole morning was spent just hanging around waiting for the release paperwork to get to me.

2007-08-22 — Calendar entry — My first tattoo

2007-08-22T14:04:00.000+02:00

At about 8:00 in the morning I was wheeled off to the operation floor. I don't really remember much of this now — I remember the later operations more vividly. I do remember coming around in a large recovery room and the Professor telling me it had all gone fine.

This is my first tattoo — and they are going to cut it out later in the year.

When I got back to my room I was immediately sick all over myself. It is surprising how embarrassed one (or me anyway) can get when something like this happens in a hospital — I'm mumbling abject apologies and they've probably had this happen hundreds of times and know well it is just one of those things.

Sarah and Ben left some time early in the morning today.

2007-08-21 — Calendar entry — Admission to 18-Dora

2007-08-21T14:03:00.000+02:00

I was asked to present myself at 12:00 at the Cranio-, Maxillofacial and Oral Surgery (Mund-, Kiefer- und Gesichtschirurgie) ward at the AKH in preparation for the tattooing of my mouth. This was ward 'D' on the 18^th floor of the green tower known as ward '18 Dora' for short.

The patients I could see (not so many as I had a single room) mostly had big bandages wrapped their heads — a little scary, especially as I knew this was the type of thing that was to happen to me later on in my treatment.

I just had to hang around waiting for the odd doctor and the anaesthetist to come to me.

2007-08-16 — Calendar entry —- more scans — I am asked to expire

2007-08-16T14:01:00.001+02:00

This one was a simple one. A CT (Computed Tomography) scan of my head. Apart from discovering what a hot flush must be like when they inject an iodine solution into your blood stream CT scans are pretty routine and not all exciting. It was certainly not claustrophobic like the 'nuclear' scan.

Either because of my family name or because of my accent when speaking to the receptionist I was given an English language leaflet and form to fill out. It was a general purpose one that included instructions for lung CTs — was very interested to note that 'einatmen' (breathe-in) and 'ausatmen' (breathe-out) from the German version had been rendered as 'inspire' and 'expire'. It was a shame that my scan was of the head and so I missed the opportunity of a machine telling me to 'expire now'.

2007-08-16 to 2007-08-21 — Sarah and Ben visit Vienna

2007-08-16T14:01:00.000+02:00

Absolutely nothing to do with tumours and the like, but my daughter Sarah and her boyfriend Ben arrived for a few short visit. It is always a delight to see Sarah — Ben too. Their visit slotted just nicely in between my various activities at the AKH.

2007-08-13 — Calendar entry — the Department of Nuclear Medicine

2007-08-13T14:00:00.000+02:00

I thought I was scheduled for just a full body scan but it turned out to be that and a 3D scan of my head. For these I had to take a radio-active material (I can't remember now whether it was something I drank or something dripped in through a needle) and then wait for a couple of hours. I was allowed to wander around the hospital but asked not to leave it.

When the time was up they did the full body scan. When it was over I saw the picture — a really cool picture of my skeleton. I later asked for a copy of the picture — they seemed dubious about this and I never did get it, but it would have been really cool on my web-site. Not everyone gets to see their skeleton.

Then I had the head scan. This was the pits. I'm not particularly claustrophobic but I was close to panic in this. The device was a in the form of a equilateral triangle which rotated round my head. When the flat side of the triangle was directly above me it actually touched my nose — there was that little space inside. It lasted for 20 minutes or so (I'd been told this but there was no way to know how much time had elapsed and how much was left. It got very hot inside and I was about to pull myself out when it finally was over.

2007-08-08 — Calendar entry — the first visit to the AKH

2007-08-08T13:56:00.000+02:00

My earlier appointment with the Professor was in his private surgery — this was in a very busy out-patient department of a very big and crowded hospital.

I had the obligatory waiting period — one thing I have learned over the last year is the patience and serenity to accept the long waiting periods that every medical appointment seems to involve.

Then I was called in to see Dr Schopper. He explained very thoroughly what they suggested be done. He told me that the Department had very good results with my type of tumour and had adopted a programme of chemo and radiation therapy followed by surgery. The first week of the therapy would be chemo and radiation together and would be done with me as an in-patient. The remaining four weeks of therapy would be radiation only and would be done as an out-patient.

The surgery would probably involve not only removing the tumour in the mouth but also one (the left) lymph nodes in my throat. Depending on the result of the operation it might be necessary to have a second operation to remove the lymph node on the other side.

Before all this there would be a et of tests and scans and also a small operation to tattoo around the tumour. This is because the radiation therapy could well actually make the tumour disappear and without the tattooed outline they would not be sure what to cut out!

For the major operation they would build a new floor to my mouth using a graft taken most probably from my wrist.

When he was sure that I understood and agreed to the treatment he outlined the whole thing swung into action. Blood tests were made (well the blood was taken for the tests), a mouth X-ray was made and I was sent to the photography department for photos of the inside of my mouth to be taken.

Lastly a set of appointments were made for further tests and scans.

2007-08-07 — Calendar entry — a phone call from the Professor

2007-08-07T13:55:00.001+02:00

Just after lunch time and I was picking up my camera from the shop where it was being serviced when my mobile rang. The shop was noisy but the message was clear. I had a malignant tumour in my mouth. Professor Ewers apologised for giving me this type of news over the telephone but said that as he was on holiday he was not able to do the face to face discussion that he would normally do.

He had, however, arranged for me to see one of his deputies the next day at the Vienna General Hospital. Professor Ewers is the Head of the Department of Craniomaxillofacial and Oral Surgery in the hospital (www.meduniwien.ac.at/maxillo-facial/home.htm). In German it is the Universitätsklinik für Mund-, Kiefer- und Gesichtschirurgie.

The Vienna General Hospital (the Algemeines Krankenhaus der Stadt Wien or the AKH — pronounced Ah-Kah-Hah) is Austria's biggest hospital and is also a University teaching hospital.

When I got to the hospital I was to go to the seventh floor, find his secretary and she would see that I was taken care of.

2007 08-02 — Calendar entry — a visit to the Professor

2007-08-02T13:53:00.000+02:00

I had to wait quite a while to see the Professor and when I finally did he was everything I ever imagined a Professor to look like. Tall, balding and sporting a bow tie — there was nothing else he could be.

He looked inside my mouth and told me he would do a biopsy straight away. So, a local anaesthetic injection and he did a bit of scraping and cutting inside my mouth. It was actually rather unpleasant but then I've always hated everything dentist types have ever done to me.

He told me the results would be back from the laboratory in a few days and that he would contact me even though he would be on holiday.

2007-07-31 — Calendar entry — a visit to the Dentist

2007-07-31T13:52:00.000+02:00

Another dental first! There was nothing wrong my teeth! But, and it was a big but, the dentist said there was a growth on the floor of my mouth. With the aid of a mirror he showed me a whitish coloured thing under my tongue. I'd had absolutely no idea there was anything there — no pain and nothing obstructing the normal working of my mouth.

The dentist wanted me to make an appointment as a matter of urgency with Professor Ewers whom he considered one of the top experts in this field in Vienna.

It turned out that the Professor was about to go on holiday for a couple of weeks but he was able to fit me in for an appointment in two day's time before he went.

2007-07-30 — Calendar entry — I make an appointment

2007-07-30T13:42:00.000+02:00

I was feeling very virtuous on this day. I'd made appointments for a whole set of routine medical appointments (things like the regular lung CT scan, a prostate check and so on). There was a time when I'd continually put off doing things like this and I was feeling very 'grown-up'.

I suddenly decided to make a dentist appointment — to make it a full house. I'd not been to a dentist for almost five years, since I'd had all my remaining teeth capped. This was the first time in my life that I'd ever made a dentist appointment without being in absolute agony — first time when I'd ever made an appointment without anything being wrong as far as I could see.

The dentist was going on holiday but could fit me in the next day so long as this was just a check-up and not a request for urgent treatment.