John vs. Cancer #11: I Can I Can’t

***Previously on John vs. Cancer: burying the lede like nobody’s business, our hero announced his remission in a blog full of terrible jokes.***

Something very strange happened to me today.

In fact, it was so strange that it now happened yesterday. I tend to sit down and bash these things out more or less in one sitting, but yesterday I really couldn’t marshal my thoughts. In part, I think this was because it’s all starting to happen again – by the time this is published I’ll be back at Barts having my blood tested, the last bit of prep before I have another bastard PICC fitted on Monday and get involved in some more chemo. If all goes well, a fortnight today I’ll finally be having my transplant. And it’s only now, as I edge into my tenth month of treatment, that I’ve really been struck by what a profound effect this illness has had, and will continue to have, on my life.

Expressions like ‘life-limiting’ don’t come readily to me. I have not considered myself to have a life-limiting condition because it doesn’t seem either accurate or helpful to do so; either I’ll get better and my life won’t be limited, or I won’t and the proper expression will be ‘life-ending’. The nice thing about this sort of cancer is that there’s not much chance of a middle ground.

Even with a kill-or-cure prognosis like mine, though, there’s a little room for manoeuvre. This week I’ve run headlong into two things that haven’t been part of my life for a while, but that I’d always assumed I’d be able to pick back up as it suited me. Well, it turns out I can’t, and – much though I resent admitting it – there’s no avoiding the fact that my life has been limited.

The first Impossible Thing was a concert. It’s not the first one I’ve missed because of this tiresome illness – the week after my first transplant in November, my beloved Greyhounds Greyhounds Greyhounds and the majestic Felix Hagan and the Family BOTH had gigs (the gits) that I attended in spirit only. The difference is that I’ve seen them since, and the gig I’ve had to pass up this week will never happen again.

My beloved Funeral for a Friend, soundtrackers of my teenage years and the only band I’ve gone to see three times without being acquainted with any of the musicians, are currently in the middle of their farewell tour. They’ve scheduled two nights per city, playing their first album in full on night #1 and their second on night #2. Those two albums came out when I was 14 and 15, and I adore them still – these gigs might have been designed with me in mind (as might the tour title, Last Chance to Dance). But when they were announced in September, I was in the middle of chemo and had no idea whether I’d be a) alive, b) out of hospital or c) medically fit to mosh by the time April came around. Of course I didn’t book tickets. It would have been mad to book tickets.

As it turns out, the original gig dates are this weekend and I’m absolutely well enough to go – but, in easily this year’s most annoying quirk of fate, the roof of the Shepherd’s Bush Empire has fallen in or something and forced a reschedule. Funeral for a Friend’s last two gigs ever will now take place five miles from my front door and three weeks after I’ve been given my sister’s stem cells, just as the first flickers of graft versus host disease are likely to be assailing my system. (Medical ephemera fans, take heart – there’ll be much more on GvHD and the mechanics of an allograft in a future, less whiny blog.)

When I realised this on Tuesday, I sat at the kitchen table and cried. I haven’t seen FfaF in a dog’s age, and I haven’t been much interested in their last few albums, but this seemed like such a perfect opportunity to pick up where I left off – ten years to the week, now I think about it, from the first time I saw them. A cynic might suggest that I’m redirecting my fear and frustration about the transplant onto the relatively trivial matter of getting to see a Welsh post-hardcore band for the fourth time, and I would invite that cynic to fuck off. If you’re going to leave a snarky comment about my taste in music, likewise fuck off. Not in the mood.

Having got myself into a right old tizz for most of Tuesday afternoon, I pulled myself out of my appropriately emo pit of despair (this is a lie, Ella pulled me out with clams and The Railway Children) and resolved to start Wednesday with a smile on my lips and a song in my heart. And so I did. Until, that is, I got an email that started like this:

Subject: British Bone Marrow Registry

Dear John,

You are registered as a volunteer bone marrow donor with the British Bone Marrow Registry, a part of NHS Blood and Transplant.

We have found that you are a potential match for one of our patients, and would very much like to speak to you as soon as possible.

I mean, fucking hell.

What are the odds of that? I gave a spit sample during one of my blood donations, some time between 2006 and about 2013, and had almost completely forgotten I’d done so. I remember having tests to see if my platelet count was high enough to become a dedicated platelet donor (something I’m amazed – and, now very grateful – that anyone bothers to do, because it’s quite a performance), but I can’t for the life of me work out when I swabbed my cheek.

Of course, being called up is not that unusual in and of itself; thousands of people sign up to the register every year, and each week a handful are mobilised by NHS Blood and Transplant, Delete Blood Cancer and of course Anthony Nolan. That’s part of what makes the whole idea of bone marrow donation so wonderful, at least from where I’m sitting; you do something small now, go to a tiny amount of inconvenience, and twenty years later you could get the call.

Or, obviously, you could ring up NHS Blood and Transplant, explain the situation and listen to a keyboard tapping in Bristol as a nice lady strikes your name and details from the register. That’s the path I went down (trying to pretend I didn’t have cancer seemed like it would probably backfire sooner or later; it certainly did last summer). Impossible Thing #2 is being asked to save a life and having to say no.

I do know, of course, that it wasn’t a case of me saying no, that ‘ought’ implies ‘can’ and it’s not my fault that I can’t donate any more. But I can’t stop thinking about the person who needs my cells, or would have needed them if they didn’t have their own problems. The thing is, odds are on that he’s just like me. He’s probably male, and almost certainly white. He’s here in the UK. Statistically, he’s got a good chance of being somewhere in London and the south-east; and if he’s being treated for a blood or bone marrow cancer, that means he’s got a good chance of being in the same ward as me next week. Perhaps he’s in one of my old beds.

He’ll probably find a match, my tissue twin. Maybe it’ll be my sister; she’s on the register, and if she’s a perfect match for me then she might be for him too. Maybe in a year’s time we’ll be on the same bus, completely unaware that at a cellular level you could barely tell us apart. Maybe we’ll be dead. Who knows. All I’m sure of is that I can’t help – that in however small a way, my misbehaving lymphocytes are now putting someone else’s life at risk too.

I don’t mean to sound unnecessarily bleak (although Ella, leaning over my shoulder, has pointed out that this is shockingly joke-free for the blog called “darkly humorous” by no less a personage than Richard ‘little pot of honey’ Dawkins), but I’m not feeling very witty today. I’ll pull myself together, of course; in a few minutes I’ll be off to the clinic for bloods, and next week I’ll be cracking wise through gritted teeth as the fucking catheter inches back into my arm – but it’s a bit of a shock to realise that really, this won’t ever be over. I’ll never give blood again, and any blood I receive, even if it’s fifty years from now, will have to be irradiated first. I’ll never see that band again. I’m sure I’ll recover – with a bit of luck I’ll even be pronounced cured, which is more than most people get – but like an underresearched tattoo or an impulse-bought pet tortoise, cancer will stay a part of my life for as long as that life, limited, lasts.
 
***Next time on John vs. Cancer: the whys and wherefores of allogeneic hematopoietic stem cell transplantation.***
 
SERIOUS ASIDE
I’m going to keep writing these blogs until I die or get better, probably, and although I don’t really want to sell them (there’s a time and a place for editors), I do want to include a regular plug for Anthony Nolan, the charity that will hopefully save my life with a stem cell transplant some time in the future. I’ve written a thing about them over on JustGiving, and put in a button below to make it as unavoidable as possible. You can give them your spit and maybe save a life sometime down the line, or give them some cash and support the work they’re doing right now. Either way, if you don’t at least have a cursory read then I’ll know, and I’ll lie in my hospital bed wishing you were a better person.

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11 thoughts on “John vs. Cancer #11: I Can I Can’t

  1. janeide2013 says:

    Oh, John. ALL the hugs. And maybe one of the 936 donors (count ’em folks – NINE HUNDRED AND THIRTY SIX) donors that you, personally, have funded will be a better match for your ’tissue twin’ than you’d ever have been. Can’t say anything comforting about the gig though – sorry.

    Jane xxx

    Liked by 1 person

  2. Another beautifully written piece, John. I am truly sorry for the limits your illness puts on your life, but am inspired by the manner in which it also seems to have made your life limitless. If that makes any sense. I hope it does. I think you’re fabulously intuitive. I wish you every possible success with the transplant. All of Canada is rooting for you!

    Like

  3. itsathought2 says:

    Fuck Cancer. I hope you and your sister and Barts people kill it dead and you come out stomping. Because its utterly unfair.

    Maybe your unknown stem cell twin will be saved by someone who signed up because of you. If you search for meaning in horrid things – you can at least know that your horror has had many positive implications as well. Not that it feels all that great when you are staring down the tunnel of the transplant. But it remains implacably and strangely true.

    Like

  4. Jane Sargeant says:

    John, have loved reading your blog. I really appreciate you speaking about that small bleak window that you glance through now and again. I love your writing style. My SCT is from an unrelated donor and will be on May 6th. Chemo starts 30 May.
    And clams……nice….I am eating bakes oysters and mussels lots as they will be off the menu for ages afterwards.
    Bon chance my friend….I am hoping for us both. Xx

    Like

  5. Alicia says:

    I felt after my initial cancer year (and ongoing healing) that I had been zapped of numerous potentials, and time had moved on without me somehow. I was jealous of people who were skipping along in their lives, making progress, getting promotions, etc. while I was stuck in my cancer bubble. Knowing you through the miracle of the internet is such a joy. Your world has changed, some things are presently on the back burner. But your exquisite writing and marvelous perspective is powerful. Sorry you had to miss that band and I agree that your reach toward the aid of others has not fallen short.

    Here’s to you and cancer ass kicking.

    Like

  6. Jack says:

    Just to say that I went to see The Damned do a ‘farewell’ gig in 1989 and … it wasn’t their final gig. So never think you won’t see a band you love again just because they’ve split up or stopped touring. I mean I realise there might be another, more permanent reason. Which obviously would suck. But I just wanted to say that bands are weirdly inclined to tour again, no matter what they say now this minute.

    With very best wishes.

    Like

  7. Jo Martin says:

    Wishing you the best of luck with this round of treatment John. I love both yours and Ella’s writing. Your candour and humanity are truly heartwarming and touch others lives in a very positive way. Stay strong and resolute, so many people you will never meet are rooting for you.

    Like

  8. Ruth Flavell says:

    Good blog. Humour isn’t always required. Fingers crossed for you over the weeks coming.

    Like

  9. Miranda says:

    You have already made a huge difference and this blog is real and how you feel so thank you darling. Good luck for your future treatments. Keep on keeping on xxx

    Like

  10. joella says:

    Hello, one of your long time lurkers here. My boyfriend is one of those platelet donors – he does it mainly for good Marxist reasons: he has platelets he can give, other people need platelets. But also because he gets to go for guilt-free fish and chips afterwards to fortify himself for the bike ride home. I love your writing, and thanks for doing it. The bleak stuff is just as good as the funny stuff, at least in my book. X

    Like

  11. Charlotte says:

    Dear John,

    I’m sure that, on a day when you’re feeling less assailed by the lurking demons of anxiety, you would phrase the sentence “just as the first flickers of graft versus host disease are likely to be assailing my system” differently, as I know you will have been informed in detail about this & will know just what that likelihood is. I also know how very scary it is to contemplate.
    However, as this is/was a day when, despite your really remarkable positivity, those demons seem, quite understandably, to have gained the upper hand, please allow me to step in and wrestle them to the floor on your behalf by deleting the words “are likely to” and replacing them with “may”.
    I’m crossing all fingers for you that you will NOT be affected by GvHD, that you will get through your allogeneic transplant without complications, that it will be wholly successful, that you will be allowed to go home early, recover well, and live a long and healthy life.
    Many many congratulations on your extraordinary fund- and awareness raising for Anthony Nolan.
    Love, Charlotte (- MM, autologous transplant last May, was very frightened but it was nothing like as bad as I feared, briefly developed but was quickly treated for engraftment syndrome, now still in stringent remission)

    Like

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