2008-12-15 Newsletter: End of chemo!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

"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

…

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

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

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