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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!
It’s exactly a year today since my Leukaemia diagnosis. I don’t know what it is about anniversaries but there’s something neat in looking back at a year passed, and something makes me want to mark it in some way. It’s been a hell of a year alright, and I really had no idea what I was facing into 365 days ago, but maybe that’s a good thing!
The best thing I can say is that, a year on, I’m healthy and happy and have an even better perspective on life than I had before now. In many ways I’m happier than I’ve ever been. I had 5-6months of in-hospital treatment and then have been recovering for the last 6 months (I’m still in treatment, and will be for another 18months or so, but it’s very light and is more of a “just in case” treatment in my case (APML) than a necessary one.), but I’ve been negative since round 1- which I underwent in Aug/Sep of last year- and thankfully it’s stayed that way.
It’s a funny thing; because the treatment is rolling you don’t really ever feel like you’ve reached a time when you can celebrate the Leukaemia being gone, and maybe that comes after the 2-year maintenance treatment is over, or maybe there’s a 5 year mark that you can celebrate, or maybe you never really trust that it’s gone. A year later I’m certainly not ready to “celebrate’ an all-clear just yet, so instead I’m really just having mini celebrations in my head. Every time I go to a gig, a movie, a gallery, a show, out to dinner, to see friends, talk to my bff’s about their upcoming weddings – which I get to go to later this year, go for a walk, go outside, drive my car, anything really, I tend to think how great it is to be well, how great it is to be out and about, and what a privilege it is. I’m probably 99% back to normal health wise, and it feels wonderful. Although physical strength returning has been slow – not in an obvious way perhaps, but more that your ability to stand for a long time, to go for long walks, to exert yourself in anyway is seriously diminished – Pilates has helped enormously (total convert- it’s amazing, go do it) though and the fatigue has passed which is a godsend. Having to take things slow is one thing, and to be welcomed, fatigue is quite another.
I guess the purpose of this little post is to mark the diagnosis anniversary, to give a little update on how I’m doing a year later, and to say thank you to all my family, friends and the lovely people I’ve met along the way that provided the support to get me through. People are pretty wonderful, given half the chance, and this whole experience has just made me realise that even more. It’s also turned me into a giddy monster; I’m so giddy for Electric Picnic this year, and hoping to dance around a field instead of being stuck in a bed like I was for last years festival, I’m giddy for my two main ladies’ weddings that are coming up before christmas, I giddy to get back to work, I’m giddy to head back to Edinburgh (where I first fell ill) next week, and spend some time there with my whole family to reclaim the city for myself, and I’m generally just giddy for everything and anything I can get my hands on to do, giddy for the future I guess, which is no bad thing. Long may it last.
If you’ve found this post because you or a friend/relative has been diagnosed with APML and you have any specific questions feel free to leave me a comment and I’ll be happy to reply or email you direct. See all Leukaemia related posts here
In a week where there’s been much debate on the HSE, and what the incoming parties might do to/with it, if/when they get their hands on it after the election, I’ve been reflecting on my own recent HSE experience. While I understand that it’s far from a perfect system I think we hear far too much about the negative and not enough about the positive. The well acknowledged problem is of course the existence of a two-tier health system in many aspects of healthcare, but it’s reassuring to know that when things are really bad, when something very serious is happening to you, the public healthcare service is more than capable of responding, and responding at the highest level.
I was diagnosed with Leukemia back in August (which I’ve posted about a little) while I was in the UK, and excellent public care on the NHS (a reciprocal NHS/HSE arrangement exists to extend cover to public patients in either territory) was swiftly followed by excellent care in St. James’ Hospital in Dublin.
I was an in-patient on Burkitt’s Ward for pretty much the guts of 5 months, staying in for stints of 3-4 weeks, then out for 2-3 weeks, then in again and so on. For the five months I was there, being treated in a specialist unit, I encountered at least 80 people, all of whom were friendly, helpful, reassuring, professional and great at their job. Consultants, Care Assistants, Nurses, Cleaners, Doctors, Catering Staff, Nutritionists, Physios, Students, Nuns and Social Workers; every single person I encountered did their job exceptionally well and made my time in hospital all the easier. No doubt inefficiencies exist but when Fine Gael talk about cutting 8,000 jobs and abolishing the HSE I sincerely hope they know what they’re talking about and not just playing to the crowd – of course I may admittedly be feeling jumpy given that they’ve just launched a frankly staggeringly awful Valentines Day “viral” on their website which does little to instill confidence, but I digress.
While I was in hospital I was cared for by so many people, many of whom were already under real pressure due to staff cuts in their departments. For many of them when a colleague was on holiday they weren’t replaced for the duration of their time off, and optimum scheduling numbers for nurses in particular was almost never met. As far as I could see they all managed to complete their primary work every day , and of course that alone leads to questions about how well resourced they actually need to be if the work is being done, but coming from a sector myself (the arts) which is often similarly under resourced at a personnel level, I know only two well of the long term damage such under resourcing lends itself to. If people are good at their job they will do anything to complete their jobsworth in the short term, but stressed workers are not happy workers, and in time things slip or job attrition takes hold.
I am sure that any patient that has experienced excellent care will attest to the quality of the front line staff int he HSE, but it’s just not commented on enough. So with Valentines Day upon us I want to send my Valentine, not via Fine Gael, but to all the brilliant brilliant staff that work in or on or around the Denis Burkitt Ward in St. James’ Hospital. It’s a public ward and I was a public patient and received outstanding public care for 5 months, and continue to receive excellent care on the Day Ward. I won’t name them all or I’d be here all day, but literally every single person I encountered in some way made that particular day better or easier, so my heartfelt thanks and appreciation goes to them, every one.
I’d also like to send out a much belated thank you to every single person who donates blood. I forgot to keep count but I’d say I easily had 15-20 blood transfusions and at least as many platelet transfusions over the time I was inside. So few people can actually donate blood (far less than you’d imagine) and it’s a pretty exceptional civic service from those that can. I can literally attest to the advertising – I’m not sure how I’d be faring right now if I couldn’t have got the blood I needed while I was most unwell, so to all those anonymous donors I thank you from the bottom of my heart. I’m sure giving blood is no big fun, and remembering to donate again and again is even less fun, but on behalf of all of us that need it, I thank you. I thought about you every time I was hooked up to another transfusion, and thought about everyone in the blood transfusion service that work with blood. So, if you’re reading this and looking for a tangible way to help people in this country of ours maybe think about giving blood – it’s free, doesn’t require a huge time commitment, but it helps so many. A real civic service and a way better Valentine than the boys in blue want you to send…