To everyone that reads this,
I feel that it’s necessary for me to write something following the outpouring of love I have felt from the internet since the Cosmo piece came out. It has been totally overwhelming and truly heartwarming to hear from people saying I’ve inspired or moved them in some way. I try to reply to everyone with a “thank you” but it really doesn’t feel like enough – it does not come close to really conveying how much I appreciate every single message.
The truth is, I never set out to be an “inspiration” of any sort – I just wanted to get through having cancer and return to my normal life. But then the cancer came back. And GvHD happened in my skin and gut. Then it attacked my eyes and I lived in the dark. Then it delivered what would be its ultimately fatal assault, shrivelling the bile ducts in my liver to a degree that left me with days to live and having to accept a sub-standard, unmatched organ because the alternative was to be poisoned by the bile that filled my bloodstream.
No one expected the stem cells from the new liver to move into my bone marrow and expel the German donor, effectively being a third stem cell transplant. How could they, when I’m the only person I’m the world for all this to happen to? It’s great to be a medical marvel, but not when no one knows what to do with you because there’s no precedent, and you’ve got GvHD in your lungs from your liver donor and the damage is irreversible. Now the liver is misbehaving, even after more surgery to reconstruct it in 2012, and it can’t be fixed. I planned on living big, to have people know my name, but I didn’t think it would be for dying.
And there are so many ways this could have been prevented. If there were more people on the Anthony Nolan register, I could’ve had a better donor who wouldn’t have given me quite so much GvHD. Failing that, if there were more people registered to be organ donors and less families who refuse to let their relatives be one, I might have got a better liver which wouldn’t be failing now, or the third stem cell transplant might not have occurred and my lungs would work properly. Or if drug companies had been more interested in new antibiotics ten years ago, the bugs I’m growing now might be treatable.
But that’s not the case, and instead here we are, and my only way to affect the world is to shout from the rooftops about all these issues to try and prevent this from happening to anyone else.
And it seems to be working. At least, I think so. People are tweeting and emailing me saying they’ve signed up or talked to their families and it feels fabulous to know that it’s because of me. If everyone that’s followed me since the article came out signed up, over 150 people could benefit. We still need more though, considering over a thousand people died last year waiting for transplants.
This started off being about gratitude and has ended a bit rantily. It should end with thanks though. I am so grateful for the life that I do have, the people in it and the things I’ve been able to do. I have been so lucky, and am so privileged to affect so many lives. My point is thank you, but please don’t stop here. Keep signing up and talking to people about these things, because if I’m going to live big, I’m going to do it through all of you.