March 24, 2020

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.

Suggested reading
How coronavirus exposes our fragility

By James Kirkup

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.

I’m a good patient who does everything I am told to do. The wonderful staff at the UCLH Macmillan Centre know me so well they call, “Hi, Stephen” as I get out of the lift. I’ve seen more of the truly brilliant phlebotomist — hello, Alex! — than many of my friends. (Incidentally, is there any more undervalued medical skill than the ability to take a blood sample painlessly? Undervalued by medics but so very valued by those of us who need them.) My denial isn’t about the fact of my cancer but, rather, dealing with what it might actually mean. Death, in other words.

I spend hours online reading through research I don’t really understand, but pretend to myself I do. In reality, I know deep down that this is a form of displacement for confronting the reality that this thing could kill me. And I am fine with that displacement because, if I’m being honest, I know that I have spent the past five years deliberately trying to avoid thinking about the prospect of dying early.

I consider myself a rational person. I am Jewish but I have no religious faith (Jew-ish, as Jonathan Miller put it). I have always worshiped at the altar of science and humanity’s capacity for learning — and continue to do so. So I have told myself that I’ve dealt with the diagnosis by parking it at the back of my mind, accepting the consequences but not yet dealing with the emotional impact. Why do that now when there is no need yet? I’m 55 now, and if the treatment works, I could have decades left. Wait until I need to start with the morbid stuff.

It turns out that is all utter rubbish. I realise now — now that my cancer is no longer just a chronic inconvenience which poses a vague threat to my life but something that could lead to my dying within days — that I have been dealing with my death already. I’ve just refused to admit it to myself.

When I set out to write this piece, it was to have two distinct halves — BC and AC, before and after Covid-19. In the BC first half, I was in denial. In the AC second, I was confronting the possibility of imminent death. But as I thought about what I’d say, I realised that almost everything I thought was a new reaction, prompted by the coronavirus, turns out to be something I’ve felt all along.

Suggested reading
Coronavirus will break down our social bonds

By Polly Mackenzie

I have, for example, started crying at night this past week. Everyone says at the moment that we all need to be careful not to overload on the bleak news. Pah! News is my oxygen, I thought. I live for news. And yet, when the gadgets are all off and it’s just my head on the pillow in the dark, I start blubbing. Not a generalised sob but a specific cry, in response to one of the coronavirus stories I’ve seen in the day. This is odd for me because I am not a cryer. Just not my thing.

But then, I think about it and realise that in recent years I have in fact started welling up at the drop of a hat, in the most banal circumstances. I’ve stifled the tears — sometimes it’s been at the cinema watching some awful film with the kids, and I don’t want them or anyone else to see. But tears there are, however much I hide them even from myself .

The kids. Even just typing those words has set me off. I’ve got a 10-year old girl and an 8-year old boy and, while I might not be the best father in the world, I am their only father and I don’t want them to have to confront losing me. I don’t want to have to think about not hearing my daughter sing again or my son play the cello. I don’t want to have to contemplate never cuddling them again. Over the past few days, I’ve had to do all of that and more. Because it’s now a real possibility.

But even though I pretended I wasn’t that affected before coronavirus, I was. And I know why. It’s been precisely when I’ve been doing something banal and inconsequential that it has dawned on me subconsciously that the cancer means that, at some point, I might not be doing this.

There’s a wonderful line in Woody Allen’s Love and Death. Allen’s character asks Diane Keaton’s, “Sonja, are you scared of dying?”. She replies: “Scared is the wrong word. I’m frightened of it.”

Honestly, I am frightened of dying. Specifically, of dying now. I can live with the cancer killing me, as it were. I’ve spent five years adjusting to it. But Covid-19? That’s just not fair.

Comment


  • March 28, 2020
    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... Read more

  • March 26, 2020
    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... Read more

  • March 24, 2020
    KBO, Stephen, KBO. Read more

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