Rainy Friday

While i was lying on the bed yesterday Pavel clambered onto me and plonked a big kiss on my face. "Daddy is at his weakest today." A sensitive boy well up on his dad's onco-immunology, one might think. Of course earlier he had come up to me, and with his best woody-woodpecker laugh, had tried to rough up my head to see the hair fall.

On a less proud note, one reason I started this blog is so that this lonely journey is not so lonely. Some friends have confided their own health issues since then and they have endured journeys I didnt know about. I feel very negligent that i was not sufficiently in touch to know.

Important dates

In four months they will assess me. They will do a CT scan and some blood tests. At that point they will decide whether the chemo treatment will last for 6 months in total or 8 months. I suppose it will be a bummer if the latter is the case. My chances of a cure are between 50 and 65 percent roughly. I have not tried to understand the algorithm yet. Not sure the consultant who told me does. The treatment itself increases the tendency of other cancers but I will leave that for another day..... If I was at stage 3 then the higher percentage applies to me. However the bone marrow sampling - which tries to determine stage 4 involvement - was taken some weeks prior to starting chemo and so we are not sure what stage i was at. If after eight months, I am still not rid of the thing - they might try radiotherapy. I am not taking any bets but I really want this to be a six month thing. I am thinking of you blog readers too. You will be bored stiff by month six I guess and deleted the bookmark long before....An up and down day in Glasgow yesterday. Dad fell and badly gashed his heady. It could have been much worse.

Glasgow design

When one is in Glasgow one's thoughts turn to design. I am toying with the idea of getting the corbusier lounger. Here it is:

A design classic and cheap too. Perfect for catching up with all the day time TV I will soon be watching? There's another version with sections of cusion. Anyone know it? Rob? Or is it too cliched this thing?

Cancer Services "need shake up"

This is what the All Party Parliamentary Group are saying this morning. There's a bit of a lottery in terms of where one lives. GPs are also failing for not referring quickly enough etc. I also feel they need a shake up. One particular ENT consultant at Addenbrookes hospital needs a bloody spin in a centrifuge in my opinion. As some of you know, he failed to do three tests on me and then one of his junior surgeons managed to turn up at my second operation without any notes. That resulted in another delay....but in my case it has to be said additional delays were caused not by medical consultants and doctors but by the secretaries who type and send the referral letters. They do this pretty much as and when they feel like typing them out and sending them.

Read the BBC story here

In bonnie Scotland today. Flight wasn't too bad. And Pavel kept us amused as usual. And the hair's looking cool. Yeah.

Finance etc

Went to see my sympathetic financial planner and also the doctor. Both re-assuring and helpful. Best to get the paper work out of the way as soon as poss. Needed to see the barber but didnt get a chance. I don't want to have large patchy gaps as I fly upto Scotland tomorrow. Glasgow is a hip place these days and one has to attain a certain minimum before one feels easy stepping into these places. I kid you not. We have been hitting a lot of architecture/interior design type places and of course the cafe scene - and these places are smart. A romanian programmer suggested glue. I am working on his sense of humour - i am gonna pay him less next time. Hope you are reading this Alex.

Its coming off - Yipee!

The wait's over. Its here before they predicted. The hair is dropping - yaba daba doo.

Ramadan and medication

The British Medical Journal online is a good read - believe it or not. They have some quite radical articles eg. on health care in Gaza etc. What grabbed my attention recently is drug intake during the month of Ramadan. Research shows that in certain countries - yup middle east in particular - a large percentage of people stop taking their medication or take it all in one go etc. All this results in a completely arbitrary use of drugs during ramadan with therapeutic failure. So much for the medical experts who come on TV and espouse the virtues of fasting even to those who are ill. Or so my contacts in Bangladesh tell me.

Read the article here.

Anyway, what do you think of my new hat?

Food Tastes

Grapes, HP Sauce, Lychee juice, hot curries, indian vegetable dishes are all a big no no with this ABVD chemo stuff. Steamed sea bass, however, with spring onion tastes absolute heaven. Very soon I shall be bankrupt with this kind of change in diet. The taste buds get it the hardest during the first few days and then it wears off. And then of course the next round kicks in.

On a less savoury note, plenty of fluid, senna and prunes do the trick. Ondansetron is the big culprit and i have got it beat....Hooray!

War

Ah the joys of cancer. The in-laws are visiting again. I recently got Norman Mailer's "Why are we at war" and Michael Moore's DVD which came out on the 18th "Fahrenheit 9/11." I shall leave them in full view of our pro-war guests. Perhaps even put on 9/11 for their edification.

First day after my 2nd chemo - so far so good. Will pass on aunty's 80th birthday over the w/e though. I feel sad about that.

Chemo Day

Shot no2. Only two and a half hours late today. Guy beside me was 21 years old. In another room a rather attractive young girl - no more than nineteen i would say - was talking loudly and chatting with the nurses. I must say these chemo nurses talk too much. My nurse took two attempts to get the canula in. I thought to myself that this was a right bloody talk shop. Next minute she was being strapped up for chemo. Dear me and she is only a teenager.

Was seen by Dr B before hand. Very informative guy. I might actually put on weight if I am not careful with the dexamethasone. And got the all clear to visit Glasgow.

OK afterwards and went shopping to fill up the new fridge.

Good day

No problems today. I have even regained some of the weight I lost. The nurse did say that weight loss with ABVD chemotherapy isn't that pronounced. Touch wood. I wouldn't want to lose my plump features after all. I get zapped tomorrow morning. Last time there was a delay of a mere 4.5 hours. Lets see what happens tomorrow.

A new fridge/freezer is coming tomorrow to accomodate my increased food needs. No doctor told me that cancer treatment involves buying white goods. Mind you they didnt tell me a lot of things...and they didn't do a lot of things they should have. My case is with PALS - the patients rights body at my hospital. I will get a response in about two weeks i think to my concerns.

48 hours

Two days left until next chemo zap of tumour. Left hand veins still a bit sore. Got a serious mood- lift today at P's school. Another glowing report.

And an apple a day keeps the cancer away. Read here You gotta eat the skin. Thats where the goodies are apparently.

Ivan Noble

Ivan's online diary on the BBC site is of particular interest to me now. He is the chap who was diagnosed with malignant brain tumour a bit over two years ago. Today he tackles the question of telling his child. He says he has not contemplated it before....I am a bit floored by this revelation. It was one of the first questions I asked the consultant. How and what do i tell my 5 year old? Robert's advice was not to say anything sinister but to keep him informed about the physical changes and that i would be undergoing treatment etc. Indeed when I asked P whether he thought I would look funny or not without hair he gave me an answer which was immediately uplifting and good for me. He said " No - you will look like Beckham!"

Read Ivan's diary here

Maybe he is just plugging Susanne Krejsa's book( it deals with telling children about cancer)? Only kidding...Its not a book I want on my reading list.

The Budwig Diet

There are a lot of crackpots out there but Dr Budwig takes the biscuit. I mean the flax seed oil. Yes this "eminent" doctor has been nominated for the nobel six times...( only six times? ) for finding the right diet to cure cancer. Take a look at this nonsense here

I should be reading Khaled Husseini's The Kite Runner not the drivel thats published on the web about cancer. I have got to a bit where I think I know how the story is going to pan out. I have to bring myself to read on.....Thanks Mike for the book.

Normality

Something puzzling about this whole thing. Saturday could not have been more normal. Took P to tennis in the morning before 9am. We then went shopping till about 2pm. Had Dim Sum at our favourite chinese. We went to visit friends for tea. Came back and had a late dinner. And went to bed around 1am after watching some nonsense on the new tv we bought and then got up about 5 hours later. This is so, err, normal. Except of course things aren't normal anymore. There was only one clue yesterday of the bind that I am in: I couldn't tolerate anything remotely spicy or oily. Andrea wrote from Berlin "Every day is a present and brings its own miracles." In the past I would not understand such a statement apart from the fact it sounds nice and gives hope. But I think i am beginning to understand now.

Day 10

Well despite my sumo-wrestler diet of danish pastries, baklavas, chocs, brittle nut bars, and of course lamb chops, my weight is down by 2.5kg since the start of chemo ten days ago. At the moment I am thinking this is not a bad thing...I need to lose some weight in anycase and get into those tight boot cut jeans so I can go line-dancing again.

Nigella Lawson has an interesting article about her today in The Guardian. Anything written about her is invariably interesting. However I find my courage to read these things a little limited these days....you will find it here

Oh, i woke up in the middle of the night ecstatic that Berti Vogts had resigned. Now i realise it was only a dream. Damn it.

Odd things

Forgot to say
* i am still having to shave eight days after the first shot. They said hair growth often stops immediately but it hasn't...
* I am going to bed about 8.30pm or 9pm and waking around 5.30am properly but quite a few times before that. So a lot more sleep than usual. Yes this does mean friends and family should call
before that watershed!
* Thanks to Chrissie for the hat. Pavel's already laid claim to it....

Robert writes..

My consultant has emailed me an update on the CT scan performed on 6th. The previous one was in July. ( They should have done one two months earlier but hey ....everyone makes mistakes....!!)

CT scan showed no change in size of glands since previous study Widespread low volume disease present but no increase in size of glands Hope all is well Regards Robert

More than a week

So the first lot of chemo went in on 7th October. Ok for the first three days but Sunday and Monday were a bit nauseous and a bit of pain in the veins. Gums have taken a battering recently as they said it would. But in all this I am wondering...is this pregnancy or cancer? I feel hungry every TWO hours. What is going on? Waves of tiredness and then hunger. ABVD please be kind to me in the coming rounds...