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