New Year's Resolutions

No 1: I am gonna be the Howard Hughes of Hodgkin's disease. Yup -no more going out to restaurants, shops, etc. I followed medical advice to lead as normal a life as possible. And what did it do to me? It made me Mr Hot Water Bag on three horrible occasions. I can't take this temperature yo-yo-ing anymore. So my incarceration begins today. I might not quite wear tissue boxes on my feet like Mr Hughes did to keep germs away but I have gotta do something. Cambridge will miss my spending power...

No 2: Iraq and new labour. What did they do to me? I can't take their criminal distortions anymore and I have to reaffirm my faith in things. So 2005, cancer permitting, I have got to do my bit for some of the things we value: honesty, decency, beauty, truth, e/quality, compassion, liberty, peace. Arundathi Roy put it "innocently" and strikingly a few years ago:

To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beauty to its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand.

I will start by designing a "Hang Blair" poster.

Grounded

Hi, Mr Hot Water Bag here. Was topping 39.3 degrees last night. I feel like one of the characters out of The Incredibles - with special powers to heat up and do some damage. Have you seen it? Well worth catching despite the dodgy over-arching message of the film.


"If we let things terrify us, life will not be worth living"

Writing on the wall, Tsunami hit Tamil Nadu.

London

Thought we would get away for a couple of days to London. So we went on boxing day and the very next day, yes you guessed it, my temperature went up. So we came back to Cambridge and I am off to the hospital for blood tests. My poor family - they dont even get two days respite.

Merry Christmas

Merry Christmas folks. Trust Santa was good to you.

Tonight a friendly oncologist from ward C10 will come for dinner. Got talking to him one night when he was performing an ECG on me - as one does. I will try to avoid asking him morbid questions. Well over dinner at least.

Better go and set up the game cube for Pavel...

Slap that tumour

It was chemo session 6 today. Things could be worse I suppose. I could be David Blunkett for example. Someone please explain to me how christian thrift can lead one to give a millionairess a rail voucher? And as Neil Kinnock put it, "Exactly which part of the word spouse do you have difficulty with, David?" I am more disillusioned with New Labour than I am with this cancer thing.

M the chemo nurse was in good form and was telling his audience ( Jason et moi) which chemo he would undergo and which not. These nurses are good on the gory stuff. Gave a choc box each to the day unit and to C10.

Nice things people write

Someone sent me this they found on the web:

"Cancer is so limited . . . It cannot cripple Love. It cannot shatter Hope. It cannot corrode Faith. It cannot destroy Peace. It cannot kill Friendship. It cannot suppress Memories. It cannot silence Courage. It cannot invade the Soul. It cannot steal eternal Life. It cannot conquer the Spirit."

Yup I agree but its still a pain in the arse....

Prerequisites

My temperature is finally out of the worry zone after four days.

If you are planning on having a long term illness of some sort make sure you acquire these before settling down to your disease:

1. that you have music. Yesterday i watched a dvd of struggle music in South Africa. Believe me it takes your health worries away... Later in the evening we danced with Pavel to Van's "Brown eyed girl" which came on the radio...

2. that you have a neighbour who is a health professional. I have a health administrator on one side ( advised me with my complaint) and a fantastically knowledgeable heart and lung expert two doors away (reassured me and put medical things in context).

3. Family near you. Not five thousand miles away in Bangladesh or 600 miles away in Scotland.

Light headed and pretty nurses

Yes I came clean and called the doctor this morning. I went in to get blood tests done to see whether i am neutropenic or not. Nurse was C. A young and very personable nurse who always enquires after Pavel. And yup she almost made me lose consciousness. Not because of her charms - but because, i think, she was at it for ages and kept pushing the butterfly in. I started sweating and then felt lightheaded. It was quite a scene. This has never happened to me before. They quickly got two chairs to lie me down flat. They were very good and I found myself uttering "thank you" in the way that helpless people do....

Thankfully i was not neutropenic and came back home clutching a couple of awful tasting packets of antibiotics. A massive book case got installed today. Can't wait to get my books out of storage. Dying without them. Literally.

Naughty me - hospital again?

I hit 38 degrees centigrade twice in the space of an hour at 1.20 am and at 2.20am. That is bad news of course.... I should have phoned in and admitted myself immediately, as it says I should in my DIY cancer manual. BUT at 2.22am I was 37.8 degrees! What was I to do? Being the coward that I am, I put the former reading ( 38) down to instrumental error! The thought of going into C10 Ward in the middle of the night and getting plugged with IV antibiotics was not that palatable. So I did my own quackery. I reckoned this temperature thing was on its way down....and so far I am right. I know its a bit risky because I stand the chance of deepening this infection ( which i think/hope is just a cold). I have promised myself that if I hit 38 again I will have to come clean and phone the hospital.

Funny all this. Yesterday morning I called clinical oncology to find out if we could travel to Paris by train. The sister's concern was exactly this temperature spiking . Nevertheless, she said she would talk to the boffins and she would get a letter written for me to take with me And then out of the blue and in the middle of the night I hit this temperature spike! Its made me realise how precarious this whole thing is. I have been overdoing it a bit - meeting friends, going on trips to restaurants and a trip to London on sunday...I had better calm down.

Mice

I wonder what mice make of cancer treatment? Poor chaps are experimental creatures in every cancer research lab going I guess. If they feel anything like I do, they must be pretty cheesed off.

I have three or five more months of this. HELP! I am a cancer patient...get me out of here!

Responses to cancer

I have to say that I have found the response to my cancer news among certain sections of south asians - both family and friends - very strange. My mother has not informed anyone in my family with the exception of one cousin. And that was only under pressure from me. My cousin had been in touch by email in the past - but after the news - not a sausage. I had the mother of one childhood friend refuse to tell her son three times the news of my cancer etc. More on this weird stuff and my take on it some other day. I would also be grateful for any sociological analysis of this....

Today I came across a gulf news site. Cancer is a difficult subject everywhere but some places are more problematic than others it seems. Bahrain for example: women don't come forward if they suspect they have breast cancer. "We have a real social problem because some men have divorced their wives or married a second wife when their wives have been diagnosed."
Check it out here.

Chemo day 5

Guy next to me at chemo told me how he had taken a fall and cracked his back. They did a CT scan of his backbone and found that he had a tumour sitting behind his heart. I asked him how he felt when the doctors told him this.... you gotta laugh. He was impressed by my two general anaesthesia operations. We almost compared scars....Thankfully he has recovered from his backbone fracture and is taking the chemo well.

A festive looking Clinical Oncology, Addenbrookes, Cambridge:

Round two

I received an appointment card last week for a CT scan on the 23rd of December. I was curious. Its not everyday that one is asked to get zapped by rays and ions and stuff. I emailed my consultant and of course received no reply. I emailed him again and yup I got no response. I then went down one notch in technology and used the telephone. The clinical oncology nurse managed to produce a convoluted response basically trying to avoid the phrase " there has been a mistake." What if I had turned up on the 23rd? They would have scanned me for no reason whatsoever. Another typical Addenbrookes cock up.

I have mulled over the response from the hospital complaints team. That document contained, as i have mentioned before, unreserved apologies, evasions and downright lies. I am now about to submit my response. This is when it hits the fan.

The Urban Cancer look

Hat by Maeldoon ( thanks mate)
Coat by Versace ( £15. Silk Market, Beijing).

The News

Incredible stuff gets published about cancer every day with catchy headlines. Orange juice is good for fighting cancer - the citrus growers down under are behind reports and studies concerning this. . Bees and honey are good for you ( from a croatian lot writing in some agricultural journal), sunshine is good against non-hodgkins etc etc. Look around you. There are bloody hundreds of things that will help you against cancer. Yet how come one in three of us will get it? Oh yes do try and avoid Brazil nuts this xmas. Some toxin will give you liver cancer....

Inex shares are down by a staggering 86 percent. Their main cancer drug is n0t getting fast -tracked by the FDA in the states. What kind of incentives are set up if such is the financial scenario behind cancer drugs?? I particularly mean testing and trials. Something ain't right.

Above links work at the mo. Don't know whether they will expire or not.

MRSA

Addenbrookes hosptial - my local and one of the top teaching hospitals on the planet -has a bad reputation when it comes to MRSA infections . Yup, surprise, surprise - its one of the worst hospitals for the super bug. So i thought it was great news when yesterday John Reid - the health secretary, ex-commie and champion of working class smokers - described some new products that would combat the super bug. Not surprisingly his department also made clear that there was no extra finance available to purchase these things.....

We blew out on Asian fusion cuisine last night. Yakitori, tempura ( did not brave sushi or sashimi cos of potentially low white blood cells), Ramen and Udon with a variety of meat toppings. Pavel loved it. And incredibly I ate everything that came my way...Nice atmosphere. Better than Wagamama's in London for sure. Teryi - aki iz the place. If you are in Cambridge, go there today!

Too soon

The December sun is pouring into my study and its really warming. The garden was very frosty and wintry looking this morning. This year winter has given me an opportunity to wear my cap without arousing suspicion - only because I was foolish enough to chop my hair off last week in anticipation of all the hair falling out. Well nothing much has happened - in fact the bloody hair is growing back. There was a bit of falling out around week 3/4 after chemo and there has been some thinning since then but I don't think I merit a no.1 yet. And having to wear a hat as a result of my rash action is a complete pain. Braved London yesterday by train. Tried to run for the train on the way back. Got totally puffed out and ended up with a very wet and hot bald head.