I’ve been aware since I was diagnosed five years ago that my leukaemia could kill me. My version is chronic rather than acute, so I’ve never had that sudden blind panic of imminent death that a cancer diagnosis can lead to. More of an extended — five year long, so far — musing on when and how the point would come when it moves towards being a more immediate death sentence, and the obvious hope that this would not be for many years.
Until today.
This morning, I received – along with one and a half million other people – formal notification from the NHS that I might well die within a few weeks. The letter, of course, is designed to avoid that, recommending that I “shield” myself from as much human contact as possible. And — not being one of the so-called ‘covidiots’ who ignore official advice — I intend to follow its lead. So from now until 14th June it’s me, my bed, my desk (and, if he sneaks in, my cat) and the same four walls.
But the urgent purpose of the letter is to make starkly clear the real threat I and the other 1.5 million of us face. This could be it.
My treatment began in January, in what I now like to think of as a spectacular piece of comic timing. My leukaemia means that my body has been making too many white blood cells which crowd out the red cells. Eventually, left untreated, my organs would not work properly and I would die. For five years, my consultant has observed a “watch and wait” protocol, monitoring me every couple of months until the moment came when that threat became real. That moment was a few weeks ago. I was put on a newly developed targeted treatment which has, so far, followed exactly the expected and hoped for course.
One consequence of the treatment, however, is that my already impaired immune system is even weaker. At exactly the moment when a rampaging virus is on the loose. In my head, this is the opening premise of a dark sitcom in which I am starring.
The coronavirus pandemic has upended almost everything for almost all of us. But it’s upended one particular part of my existence – that section of my mind which has been dealing with my mortality. After the initial shock of the leukaemia diagnosis, my reaction has been a form of denial.
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SubscribeWhat a beautiful, moving piece. All best wishes to you Stephen.
Wow, I’ve read alot if things but this has to be up there with one of the most powerful things I have ever read. I feel your emotions and the intensity of your frustrations. I feel so connected to what your saying its scary. Wishing you nothing but the best to you; sometimes life just isn’t fair sometimes😑
Thank you Stephen.
In 2015 I had what appeared to be a certain death sentence after open heart surgery. Incredibly I have been let off the hook.
You are never the same again after such an experience.
Heartfelt best wishes , my thoughts are with you.
(PS Hope you don’t mind If I cut ‘n paste a copy into word so I can keep re-reading it)
You’ll get through this Stephen. Wishing you all the best. Save those tears for the end of Donald Trump’s second term.
It isn’t or wouldn’t be fair so stay well. Best Wishes
Thank you Stephen; moving and helpful
KBO, Stephen, KBO.
Reality check needed from a fellow chronic leukaemia sufferer. First off, you’re more likely to die with it than of it. I spent the last few days awaiting the “house arrest” letter; I excaped it, but my disabled wife, thanks to more significant problems, is now confined to the house. I log my bloods results, and at this rate I shan’t need treatment for about another 12 years.