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.
Update: On the 22nd of September 2018, I woke up with the same searing pain that landed me in hospital almost exactly five years earlier. I knew the klebsiella was back, and straight to A&E we went, clad in my pyjamas, dressing gown and slippers. I remember being taken through, seeing a doctor, throwing up (and realising things had not been digesting for a good few days), then nothing for about a week. I am told that I was taken to a liver ward and given a morphine PCA to deal with the pain, which I got over-opiated on and had to have Naloxone to cancel out the effects, which was horrific. My blood pressure fell through the floor, and my kidneys stopped working. I went down to ICU, where I was catheterised, had huge line put in my groin (with no sedation - I genuinely have no idea how they did that with me in that state) and started dialysis. I did not sleep for about four days because my adrenalin was all over the place, and we had to keep the room dark because my eyes couldn’t cope with the light so my body clock was totally out of sync. I remember flashes of this, being in immense amounts of pain, feeling like I couldn’t breathe despite my sats being fine, begging the doctors to let me take a lot of Zopiclone or to put me in a coma because I could not envision getting better from this. I pleaded with them to let me kill myself, over and over. Eventually they gave me some Zopiclone (a safe dose) so I would actually sleep, then we sorted out the body clock with midazolam later on. I remember being asked baseline questions, like “Where are you? What day is it?” and I understood why they were asking me these things but I could not get the answers right. I could not connect my mouth to my brain so I’d plan to say one word but another would come out, e.g. “I want Calippos” became “I want mouthwash” and miraculously Christine was able to translate. It is terrifying to not be able to communicate what you mean, and to have such a huge chunk of time be missing from your memory. I’m sure my brain blocked it out because it was too traumatic, but I hate that I was so out of it that I could have just died without any warning, without the chance to say goodbye. I remember Christine asking me what the passcode to my phone was, because they needed to be able to get into it if I no longer could. I’m not sure exactly when I became fully lucid, maybe after I started sleeping, but it got to a point that I could start interacting with people properly again. I started to eat and drink a bit (and I really mean just a bit - a mouthful of ice cream, some instant chicken soup in a polystyrene cup), and the days and nights started to make sense again. The physios came to see me, and it became apparent that because I hadn’t been eating, my body had just eaten my thighs and stomach muscles, because I could only just stand up with the support of two people, and I was still bent over at a good thirty degree angle. Once I was able to drink enough to not need fluid support, and we could stop dialysis, the renal team were happy for me to leave ICU. I went up to the liver ward, where I spent about a week convalescing, regaining enough strength to walk around (albeit with a zimmer frame), eating three meals a day (exhausting), and finishing my antibiotics. The kidneys and the liver have both incredibly bounced back to full function, and people keep telling me I’m resilient. I didn’t feel particularly resilient when I suddenly realised I could have disappeared from the world so quickly and without being able to explain why. It is the most scared I have ever been. But I’m still here, somehow, and we have a plan to stop me ending up in ICU again. I never want to go back there. I never want to be in that position again. I can’t go out like that.