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