My leukaemia cure: a month in a hotel
Published: November 20, 2005
I first realised I was ill 18 months ago. My wife is a doctor and she noticed I had lost a lot of weight in the summer of 2004, and persuaded me to visit my GP. I had been doing a lot of jogging and I was feeling supremely fit and proud, at 52, of not getting middle-age spread. I just thought I was shedding the pounds through exercise.
My GP knew straight away something was up. She found lumps in my lymph glands that I hadn’t been aware of and referred me immediately to a specialist.
The leukaemia they found, CLL, is usually a slow-burn disease that strikes those over 60 years old and can creep along for 10 to 15 years. In my case it turned out to be much more aggressive.
My white blood cells were multiplying out of control. At first I was told there was no cure. By the summer I was experiencing terrible tiredness and uncontrollable night sweats. After two courses of chemotherapy all the symptoms vanished and a year after being diagnosed I was able to run in a local charity event faster than ever before. But I knew the underlying disease was still there. I will never forget my consultant’s chilling phrase when I asked him the prognosis: “I think you will be in trouble in about three years.”
Early this year, doctors first suggested that a “mini” stem cell bone marrow transplant might offer a cure. I am one of the first CLL sufferers to be offered a transplant, because most are too old to be given the procedure. The results from transplants are now so good there is a real possibility I will survive for many years to come.
First I had to find a donor — in my case it was my brother Stewart, who turned out to be a 100% match. The cells — looking exactly like smoked salmon — were frozen. The plan was for my white blood cells and bone marrow to be chemically annihilated over a period of a week, before Stewart’s healthy cells were infused into me. It would be a bit like wiping the hard disk of a computer and rebooting it.
The day of the transplant was known as Day Zero. Just over a month later I’m home and apparently doing much better than expected. Perhaps it’s because I was so fit before I started the procedure. Maybe it’s because of my brother’s top-class stem cells.
There’s still a long way to go: I still can’t go to a crowded restaurant or take the bus. I get breathless going upstairs. But I decided not to be embarrassed by my illness and to record my experiences on a personal website, for anyone to read. Sharing my journey with friends — and strangers — has been my chosen way of getting through this.
Meanwhile, I intend to be fit enough to run those 10 kilometres in the Crouch End Fun Run again next May. This time I’ll run on behalf of the Anthony Nolan Trust, the charity that keeps the national bone marrow register and carries out valuable research into transplants. It’s the least I could do.
Without that surreal month in a hotel, I don’t think I’d be running at all.
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