Today is a damn great day, and I’m borrowing this beautiful pic from Donal Dineen to express it. The pic popped into my inbox today and happens to perfectly sum up my mood – internally I’m jumping for joy, with a whole bunch of open sky ahead of me. Today is the first day I officially don’t have to take medication for Leukaemia in two and half years. It’s been a long time coming, but it tastes all the better for it.
I’ve blogged about my diagnosis before – APML or Acute Promyelocytic Mylogenous Leukemia- which I was diagnosed with in August 2010. In short – I was lucky, as Leukaemias go this one is rare, but very very treatable. I had 6months of in hospital chemo and then 2 years of “maintenance” which is basically chemo-lite – a mix of chemo tablets and ATRA – the APML game changer.
Now, tonight, for the first time in over two years, I don’t have to reach out and take one of those tablets, and it’s an odd feeling. It’s the best thing ever, of course, to know that it’s at my back, but the temptation to add in the caveat “for now” is overwhelming. It seems impossible to think it could be over, just like that. I’m sure it’s not, I’m sure I’ll always hold the possibility of a return, but statistically and medically speaking I’m Leukemia free and highly likely to stay that way forever more.
It’s hard to get my head around – not least of all that I won’t have that nightly reminder, by way of one pill or another, that I’m sick/have been sick (the language can be confusing) and that the time between hospital appointments will stretch out some more so that I can begin to forget. I can’t quite imagine what that will feel like, but in some ways I don’t want to forget.
While I do want to start to reclaim my body, start to take ownership of it again, I don’t want to forget the experience. It’s going to sound odd but there are parts of it that I feel thankful for, thankful for the lessons it taught me about love and support and openness. That there was a whole host of people ready to catch me, in ways that I couldn’t have imagined. It’s utterly impossible to list them, but over the last 2 and a half years, and especially the first 6 months, but I have to say a huge thank you to them all. You all know who you are, the people who sent me things to distract and relax, sent me words and pictures to support and escape, sent me music and love and news and things to laugh about and think about…all those that helped me to stay connected, stay sane, stay hopeful. And since then, all those that check in, and mind me and love me and give me work and guidance and things to do, and helped me ease back in to my life, a life that is forever changed for the better.
There is nothing like an illness to stop you in your tracks. To teach you who you are, who your friends are and how extraordinary people are if you let them in – and actually, even if you don’t. I’ve said it before but if you’ll forgive me saying it again, my family and my friends are the best in the world and so overwhelmed me with their love and support that it’s hard to talk about. That they could be there for me yet normalise it all was the best cure. Not to mention every single nurse, doctor, attendant, caterer, cleaning person, porter, just everyone on Burkitt’s Ward in St. James’ Hospital who took extraordinary care of me, and the team, especially my consultant Patrick Hayden and my specialist nurse Lorraine, who continued to do so as an outpatient.
If I could do one thing to repay them all, it would be to ask everyone who reads this, everyone who can, to give blood. I literally lived off blood transfusions and platlet transfusions while I was at my worst, and it was those anonymous people hadn’t made the ultimate donation things would be very different for me I’m sure.
So, thank you all. It took a village but I couldn’t have done it alone. I just hope you’re all ready and waiting to help me rip it for the the next 2 and a half years- I think I may have earned it!