Q&A with Doctor Doom
Well, actually he was quite a pleasant and likeable chap, but I just thought that title sounded neat. Anyway, I went into the Marsden yesterday for the melanoma clinic, armed with a list of questions I wanted to ask. In summary, my prognosis is as follows:
The Whole Brain radiation’s purpose is to stop the growth of the cancer. Not to kill it, but to slow it down/freeze it in place for a period of time. The median life expectancy for a melanoma patient similar to me (youngish, single lesion, otherwise asymptomatic) treated only with WBR is fifteen months. This is apparently a “not unreasonable” estimate for me. Could be worse, I suppose.
Surgery is not possible at the moment. To remove the tumour and leave a margin would mean removing a lump around the size of a large chicken egg, which is a considerable chunk of the brain, and would leave me with “serious problems”. And when an oncologist says ‘serious’, you know he’s not kidding. Surgery may be possible at a later stage, but it’s unlikely.
Chemotherapy is a possibility. The standard treatment is dacarbazine, which could slow the cancer down, but is unlikely to kill it. Unfortunately, dacarbazine doesn’t cross the blood-brain barrier very well, so it would be even less effective than usual. However, there is a new drug called temozolamide which goes into the brain much better–but it’s essentially the same thing as dacarbazine. It’s not covered as standard treatment by the NHS, but my oncologist says I fit the criteria for getting it, so he’s going to prepare a begging letter for my Primary Care Trust; it’s their decision whether to fund it or not.
Clinical trials at the moment are out. If there’s no movement from the tumour for a few months, then it may be possible. But the trial teams don’t want to enter people who have recently had WBR, as it may mess up their data. Which is fair enough, I guess.
And finally, it’s possible that my immune system may stop being so dopey and wake up to the melanoma. If it does, the spectrum of possibilities range from spontaneous remission to the tumour not growing for an extended period of time. However, this would be like “winning the lottery” (quoted from the oncologist), so I’m not going to be counting on it. (Seeing as how I’ve never won anything on the damned lottery.)
So that’s how things are at the moment. The situation could go downhill rapidly if the melanoma turns rampant, or they could just pootle along without much changing for quite some time.
What is clear to me is that I need to start improving my general health as much as possible. Running will commence next week–the boys and I are off on a holiday to Norfolk (Fon is still in Thailand)–and running on the beach in the morning sounds a lot more enticing than pounding along pavements in Watford.






I returned to your website meaning to re-read the brilliant stories you and everyone wrote during my Creative Writing course in 2009. It was my favourite class from my exchange period and I’m so sorry to read that things have changed so drastically in your life.
Life indeed is not fair (to put it mildly)!
I will never forget the writing tips you gave us and I hope you won’t forget how you’ve influenced so many lives in such positive ways! I am sure you will keep doing so for a long period of time to come!
My thoughts are with you and your family.
Mieke
Mieke Bakx
29 Nov 10 at 11:17