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Documenting not dying since October 2013.

2018.

2018.

I think 2018 might have been my last "good" year. It was my tenth year of being in remission. Ten years since my liver transplant. Then, just shy of five years since I was told I needed another liver transplant, the superbug that nearly got me five years ago returned, and did so with a vengeance. It set me back further than anything has in a decade, and right now I don't know how much I can regain. When the klebsiella came back, it brought some pneumonia with it, and in just a week it did more damage than the pneumothorax in 2017 did in a month. I can no longer move about my house with ease, and it is not for lack of muscle. What I lost in ICU has come back, for the most part, but somewhere inside me, the mechanism that kept the oxygen levels in my bloodstream high has failed, and I struggle to move from one room to another. I try to remember how far I have come in three short months, but this doesn't feel like something I can work on myself. I now get breathless just standing, never mind the excruciating pain I get in my lower back from my degenerative disc disease. If I were even remotely considering trying any of the opiates for the pain, my experience with the morphine PCA and naloxone in September have ended any thought of that. I really don't know what is left for me to try, if anything.

However, it hasn't all been totally dreadful. The year started off incredibly well, with my Anthony Nolan Still Standing gig selling out, raising over £14,000 and going better than I could have hoped. I rejoined the gym, and really enjoyed working out again, regaining muscles that I hadn't used in a long time. I went to Machynlleth again and had the best time meeting new people and hanging out with my favourites, plus it was warm and there were loads of dogs, so I could not have been more thrilled. In the summer, I finally had the liposuction that fixed the lipoedema that had plagued me for a year and a half, had a breakthrough with the most difficult cat I've ever had to work with, and visited the Wilder-Heritages who are every bit as delightful as you would imagine. I went to Parliament again with Anthony Nolan, where I got to meet Simon Bostic, the first ever recipient of a transplant from an unrelated donor, and reunite with Manos, one of my doctors from BCH who I haven't seen for years. I celebrated ten years since my second transplant, meaning ten years of being in remission, and wrote a poem about it that people seemed to really like. I went to see Janelle Monáe live, which was the most amazing show I have ever been to, watched Christine run her first half-marathon, and represented Anthony Nolan at the 21st birthday celebrations of the Jack Petchey Foundation, all in about a week.

Pretty much immediately after that, I had the terrifying infection and near-death drama, but that didn't put an end to the good times. In November, exactly two months after going to A&E in the worst pain of my life, I was presented with the Anthony Nolan Supporter Award for Individual Fundraiser of the Year at the Tower of London, and got to enjoy the evening with the family who have kept me here for the past eleven years. I got to have another Christmas at home with the people I love.


Even with the klebsiella, this year has been exceptional. I don't know what 2019 will bring; I feel like I will have to fight harder than ever to get through it, but I'm ready for that. I won't give up.

The 30th & 31st; Come at me, 2019.

The 30th & 31st; Come at me, 2019.

The 28th & 29th; There is a tiny dog!

The 28th & 29th; There is a tiny dog!