Eight years ago, someone sat me down and told me I had a rare form of leukaemia, a kind that was very unlikely to be dealt with by just having chemotherapy, and I would need a stem cell transplant. I didn’t need Anthony Nolan that time, because I was lucky enough to have a big sister who was a 100% match for me. What isn’t always immediately mentioned with stem cell transplants is that when dealing with cancer, the doctors want your donor to reject you a little bit, in a condition called Graft vs Host Disease. The donor cells recognise the recipient as foreign and they attack, which can be troublesome, but they also attack any remaining cancer cells lurking in the bone marrow. I didn’t get any GvHD from my sister because she was so good, and four months after my transplant, I found tumours in my face. I’d relapsed. I’d been previously told that if the transplant didn’t work, there wasn’t anything that could be done, but that wasn’t strictly true. I was offered a second transplant, but I had about an 80% chance of dying. I decided it was worth the fight. I couldn’t use my sister again, and we needed to search the world.
We found a donor in Germany, but he was then suspiciously unavailable to donate on the day he was needed, which was the day of a big German football match. We were all set to use my dad’s cells, when a new German came on the scene. He was 18, not as good a match as the previous one, but much, much better than my dad. I got a dangerous amount of GvHD from him, mostly in my gut and liver. The lining of my stomach was destroyed, and I had no enzymes to digest anything, so was IV fed for over a year. Eventually that healed though – my liver was not so lucky. The damage from the GvHD was too great, my bile ducts had shrivelled to nothing, and I was put on the liver transplant list with about a month to live. I got it with just a few days to spare.
However, some of the stem cells that came with my liver went on a journey to my bone marrow, decided they quite liked it there, kicked the German out, and so I effectively had a third, accidental stem cell transplant. This one gave me chronic GvHD in my lungs which prevents me from living anything resembling a normal life, and now I need another liver transplant because my bile ducts are harbouring superbugs which will kill me, but my lungs won’t support me through the operation. However, they’re also not bad enough to warrant replacing, and that isn’t going to change.
My point is this: I am a miracle, indescribably lucky to be alive right now, and I wouldn’t be here without my donor’s decision to register with Anthony Nolan. I am incredibly grateful, but I know that I could have the life that so many of my transplanted friends have, free to live almost as if this never happened. If I’d had a better matched donor, I might be able to walk up the stairs without getting breathless, or wake up each day not worrying about coughing up junk from my lungs. I might not have had to make the phone call to my sister, my original donor, to utter the immortal words, “They said there’s nothing they can do”. That was the hardest thing I have ever had to do. I don’t want anyone else to make that call. That’s why I want as many people as possible to register to save lives. That’s why #IGiveASpit.
Register to donate here.