Here’s the story so far, as concisely as I can put it:
In August 2007, when I was sixteen years old, I was diagnosed with Acute Myeloid Leukaemia M7 with monosomy-7. I started chemotherapy on GCSE results day. I had one course of one regime, then a course of a harsher one, then in December 2007 I had some pre-conditioning chemotherapy and on the 19th, I had a stem cell transplant from my big sister. I recovered fantastically well and went home on New Year’s Day, celebrating just how easy this cancer business had all been.
In April 2008, I noticed some lumps in my face. I had one biopsied, and it turned out to be a malignant tumour. A bone marrow aspirate and trephine confirmed that my marrow was indeed full of leukaemia again and I was given a 1 in 5 chance of survival. My only option was another stem cell transplant from an unrelated donor – using my sister wasn’t an option this time as she had been too good a match, so I got no Graft vs. Host Disease which would have caused Graft vs. Leukaemia and killed any cells that were lurking. This time, I had much more toxic chemotherapy, plus a week of radiotherapy, and on July 31st 2008, I had my second stem cell transplant from a young German fellow. I got GvHD in my skin and we were delighted. Until it got worse and it became incredibly itchy and painful. I also got it in my gut, but it was all treated with IV steroids and after about six weeks, I went home.
I was doing very well, until September 2008 when I got GvHD in my eyes, which meant I lived in the dark for a month and in tremendous pain, until I had eye drops made from my own stem cells from my blood, and they cleared it right up. (Incidentally, this is no longer given automatically and you have to apply for funding to get them, leaving people to develop scarring on their eyelids while they wait. Well done, government.) Then on October 31st 2008, I spiked a temperature, we went to A&E, and I didn’t get discharged until June 11th 2009. I had GvHD of the gut pretty badly, and of the liver in the worst way. In the fatal way. I was unable to eat because my stomach had no enzymes to digest anything, and I was turning more yellow-green by the day. At the beginning of December, my bile ducts had shrivelled away to nothing, I was being poisoned via my own bloodstream, and I was put on the list for a new liver. I got it on the 21st. The doctors had told my parents it was unlikely I would see Christmas. The liver came from an O-neg donor, and I was A-pos. This is not routine; O-neg can only receive from O-neg, so they only give them to other people when they’re nearly dead. At this point, the haematology doctors were still looking after me too, and the discovery was made that I’d had a third stem cell transplant by accident. The stem cells from the liver had gone to my bone marrow, kicked out the German, and completely changed my DNA. I’m the only person in the world all this has ever happened to.
It took six months of physio and healing in my tummy before I could leave. I developed GvHD in my skin again and in my lungs, meaning I only have between 50-60% lung capacity now. That GvHD is being treated with photopheresis, which is a light treatment that is essentially Egyptian witchcraft but it works. I’ve been having it since March 2010. From summer 2009 until summer 2011, life was relatively stable. I had treatment for the eating disorder I’d had since I was 13 but had been exacerbated by my illness, and I was doing a photography course and trying to live as normally as possible. Then I got biliary stones, which are basically gallstones and cause quite literally the worst pain known to humankind. I had an endoscopic procedure done to fix them and that was it. Until they came back. So in February 2012 I had a roux-en-y, which is when the surgeons make a new bile duct from a bit of bowel. It’s delightful. That was supposed to deal with the stones for good. Then this year, I’ve had a lot of infections. It turns out the bile isn’t draining, and when it just sits there, bugs grow. Bugs that are resistant to antibiotics. And that brings us here.
I will continue to blog about it because I think it’s necessary. I am not doing it for sympathy – I hope that if people read this, they will sign up to be a donor of any kind. I need something good to come of this.