It’s been a while since I last wrote here mainly because the past month has been one of dealing with a series of side effects from the chemotherapy & I fear that the recitation of all the various symptoms may get boring.

Unlike last year when I was given only one drug 5FU every week, this time they’re using three drugs on me, one of them as part of a clinical trial. When I signed the consent forms for the treatment it was rather chilling to see the aim of treatment as “Palliative, to prolong life” rather than last year’s aim of “Adjuvant therapy to surgery.” Last year I had a 40% chance of surviving 5 years. From now on according to the doctors, I have about 18 months to live.

The clinical trial drug cetuximab is part of the same family of drugs as Avastin, a monoclonal antibody which isn’t a cure for colon cancer but has been shown to prolong life. It is currently one of the most expensive drugs in the world costing £8000 per month, per patient and I am having it once a week. Its major side effect is an acne type rash. If you don’t get the rash it isn’t working. I’ve got it and feel rather fed up to have acne and wrinkles! But it can certainly be worse than I’ve got it. One other patient I’ve met on the same trial has had 80% of his body covered by the rash which looks more like psoriasis than spots on him. He told me that he’s had people flinch when he handed them his credit card recently and that he had thought of wearing a badge announcing that he wasn’t contagious.

The other drug I am supposed to take twice daily is capecitabine, the oral form of 5FU. The week before last I had very bad diahorrea and was advised to stop taking this pill by the hospital until I see a doctor for review on the 29th of this month. At the moment I haven’t taken it for about ten days and have felt a return of energy that I thought had gone forever.

But the worst one of the lot so far has been oxaliplatin which is administered every 3 weeks. On both occasions that I have had this drug so far I have felt almost unable to breathe as I left the hospital, my speech slurred, my eyes half closed and my hands had what felt like currents of electricity going through them. I was also unable to use the arm in which the drug had been administered properly for about a day afterwards. Chris’s daughter Rosie was staying the last time I had it and said that I looked like someone who was taking heroin!

The peripheral neuropathy is disabling. I can’t touch anything that’s even slightly colder than room temperature without pain and then numbness setting in & it makes everyday activities very difficult punctuated as they have to be with me holding my hands under the hot water tap to restore feeling in them. The last time it was intense for about a week and has only recently begun to fade three weeks later. I have been told at Cookridge that I seem to have had an extreme reaction to the drug as most people get this level of side effect after about 3 to 6 months on it. So there’s talk of reducing the dose, again a decision to be made on the 29th.

I am having a break from the treatment for Christmas and at the moment feel quite normal, almost as if there’s nothing wrong with me.

I have to say a special thankyou to those of my friends who have given up their time and taken me to Cookridge, or picked me up. And thanks so much to Mike B for organising this rota.