Monthly Archives: April 2016

John vs. Cancer #12: Transplant Day

***Previously on John vs. Cancer: missing a) some gigs and b) the chance to save a life put our hero into an uncharacteristically introspective mood. He’s not quite shaken it off yet.***

Well, here we are. Nine months to the day after getting my diagnosis, five months on from my last hospital stay, one month after we hoped it’d happen, I’m about to have my allograft – the donor transplant that’s my absolute best shot at a cure. It’s happening today! Hopefully.

As it turns out, the process of mechanically harvesting the essence of one human being to artificially enrich another is a lot more complicated than Bioshock had led me to believe. Even now, as I’m sitting snug in a pub just next to Barts (but drinking an orange juice in concession to both the hour and the day’s events), my little sister is seven floors up having her blood drained from one arm, spun through a centrifuge and pumped back into the other one.

Above the centrifuge, a plastic bag is slowly filling with the stem cells that her bone marrow has been painfully forced to overproduce all this week. If she can offer up enough cells in one session, I’ll be receiving them before the day is out; if the yield’s a bit low, we’ll do it all again tomorrow. Either way, the endgame is upon us. And there’s a 50/50 chance my marrowversary will be Ed Balls Day.

Since we’ve got a few hours to kill before anything else happens, I thought now would be a good opportunity to explain what’s been happening this week and how an allograft actually works; that way, if I die in the next few weeks I will at least have taken you through the practicalities of my treatment from soup to nuts. (The likelihood of me dying, incidentally, stands around ten per cent; more on that story later.)

At its simplest, the principle behind an allogeneic (or ‘donor’) stem cell transplant is this. If you have cancer, your own white blood cells aren’t able to find and destroy it as they would with a normal infection, because it’s got the same DNA as your normal cells. But if you can find someone with a very, very similar tissue type to yours, then their immune system should be able to root out your cancer without your body enduring too many friendly fire incidents in the process.

The friendly fire is the stem cell equivalent of tissue rejection with an organ transplant, and it’s called graft versus host disease (GVHD). In an ideal world, you’ll get just enough to prove that the donor cells are alive and aggressive; if they’re too happy with their new surroundings, odds are on that they won’t spot your cancer either. (This, interestingly, is why you can’t have a stem cell transplant from an identical twin; their white blood cells are indistinguishable from yours, which means they’ll be completely useless.)

A bit of GVHD, then, is par for the course. The most frequently affected organs are the liver, stomach and skin, so I’ll be expecting some combination of rashes, jaundice and low-grade IBS over the next few months. And once my sister’s cells have asserted their primacy, they’ll get on with the real work; the graft versus lymphoma effect, which should see them track down any remaining traces of cancer in my system and kick the little chancers to fuck.

Somewhere in the middle of all this is where that ten per cent chance of death comes in. If your allograft proves fatal, it’s not actually the cancer OR the new cells that actually do you in; the danger is that you’ll develop such bad GVHD that your brand new, donor immune system has to be suppressed with cask-strength immunosuppressants. Obviously, these also hit your home-grown white cells, and while you’re going full Bubble Boy there’s an appreciable chance that you’ll get a cold and die.

If I’m lucky (scratch that, if I’m very lucky) I’ll just have a flicker of GVHD – say, three square inches of eczema and a single, elegantly executed burst of projectile vomiting – and then shape up and be fine. The likely outcome is somewhere in the middle; somewhere between a few months and a couple of years with what looks and feels like an autoimmune disease, and maybe a couple of chronic effects like dry skin or (please, God) long-term difficulty gaining weight.

To get me ready for the above, I’ve spent the past week enjoying a fifth round of chemotherapy. It’s the first one I’ve been allowed to have as an outpatient, which hasn’t been quite the godsend I anticipated. Instead of settling onto the ward and generally taking a load off, I’ve been back and forth to Barts every day, feeling gradually weaker as my doses of Fludarabine (pretty tame) and Cyclophosphamide (absolute bastard, basically just mustard gas again) wear down my immune system in preparation for the transplant.

I can see, of course, the astonishing gall of me daring to complain about any of this. I’m very fortunate to still be a) well enough to travel back and forth, b) based close enough to Barts that I don’t have to go into the onsite hostel and c) solvent enough to spend £20 a day on cabs rather than risk getting a cold on the Tube. I’ve had absolutely faultless support from my employer, my family, my friends. My sister has endured weeks of blood tests, injections and now the inconvenience of a stem cell harvest; my mum has travelled a hundred miles to sit by her bed.

Crucially, because being in hospital is lonely and draining even at the best of times, I’ve had Ella with me every single day, putting up with the endless back-and-forth without even having me out of her hair in the evenings to make up for it. And all of us have had the impeccable support of the NHS, even in this week of (entirely justified) strike action, even with the entire service under imminent threat. If I actually survive all this, it will be an absolute group effort.

Not for the first time, I’m inclined to feel that I’ve got about the easiest deal of anyone involved in my cancer; I just drift about, making the most of the care and rest and medicine that nobody would think to deny me, and everyone else slaves away to make it all work. Realising that your continued convalescence is more or less totally reliant on the altruism of others is more than a little discomfiting. But then again, that’s what’s so incredible about stem cell transplants in the first place; they’re completely selfless acts, offering no benefit to the donor beyond the knowledge that they’ve given someone another shot at life. I’ll never be able to adequately thank my sister for what she’s doing today; for people who find an anonymous match through Anthony Nolan, there’s seldom even the opportunity to try. You don’t meet your donor, except on a cellular level.

I’m very aware that these blogs have stopped being funny, and that if I’d been this ponderous and emotional back in August you’d never have started reading in the first place. Maybe it’s because of where we’ve got to. When I was dying, I couldn’t do anything but make jokes, because the alternative was stopping and looking death in the face. Now I’m a few hours from the treatment that might save my life, it’s all a bit too amazing to be funny. I have been so unbelievably fortunate, and I am so grateful for every bit of support I’ve had these last nine months – every tweet, every comment, and of course every donation. One more treatment, just one more go at dodging the bullets, and then I’ll have a lifetime to look back at just what an extraordinary year it’s been.

Wish me luck.
 
***Next time on John vs. Cancer: absolutely no idea, I’m afraid. Quite looking forward to finding out.***
 
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 saves three people like me every single day by finding them a stem cell donor. 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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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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John vs. Cancer #10: Big News, Big News

***Previously on John vs. Cancer: having gone two months without blogging, being in hospital or feeling even remotely ill, our hero had a bit of a time finding something to write about. Today, and for the foreseeable future, he has no such problem.***

Hi everyone. This is Ella, and I’m afraid I have some terrible news.

 

 

 

 

 

 

April Fool. OH, SNAP!

As Twitter erupts with its annual, and quite correct, lack of tolerance for horrendous corporate gags, I thought I’d write my own – because if there’s one thing about which people are generally po-faced, it’s bloody cancer.

We had Harry round for some ham last night (got a lot of ham at the moment, not really relevant), and he asked if it was okay to make some gently comic remark about my potential death. This is, just to be clear, my best friend talking after eight solid months of helping keep me alive. If he feels like he can’t make a joke, then as a population we’re basically fucked for ‘cancer humour’.

What we have instead are things like Cancer Research’s awful tone-deaf ‘cancer is happening RIGHT NOW’ advert, which has been carefully included in every Tube carriage and 4OD programme with which I’ve interacted since about October. CHEERS, GUYS. GOT THE MESSAGE. This sort of bollocks just hammers home our mad view of cancer as an impossible massive fairytale monster-type illness, about which nothing can really be done bar solemn head-nodding, the occasional mournful editorial and lots of well-intentioned but basically pointless fun runs. Just so we’re clear (and I’m going to drop a line and go bold to emphasis this):

None of those things is true. Cancer is just another illness, and it is a pain in the fucking arse but given time and funds we will cure it. Hence the fun runs. Until then, STOP MOPING.

Obviously, if you have cancer then mope away. Serve yourself a double portion of self-pity pie, have a doleful look at yourself in the back of your spoon and chow down. If someone you know has died, you are also permitted a reasonable sulk. I am not going to tell you not to be pissed off about having cancer in your life.

But I am going to tell you it won’t help. If you’ve got cancer, I know FOR A FACT that you hate people tiptoeing around it and treating you like an inherited china figurine – something to be cooed over briefly, sure, but in the long run absurdly fragile, of absolutely no practical use and the cause of a whole lot of extra dusting. I’ve talked to a lot of other cancer-people these last eight months, and I have never encountered an opinion that departs from the above. We all fucking hate being fussed over, and people thinking that cancer ‘isn’t something to joke about’ is maybe the worst bit of all.

Don’t worry, this isn’t going to become an unduly positive self-helpy type blog (in fact, my one cast-iron insistence during the negotiation stage of our Cancer Book was that I would not ever write anything deliberately heartwarming or inspirational), but I do reserve the right to tell you, and anyone who wilfully mopes in my earshot, that you’re wasting time you could spend on playing Trivial Pursuit or learning how to make an Old Fashioned or, I don’t know, going to Stonehenge or fucking jogging or whatever it is you would otherwise like to do with your remaining stock of days and hours. Personally, what I like to do is make light of the world while I can, because in eight months’ time President Drumpf will have me and all the other media scum in internment camps.

So, on this day of calendarily prescribed humour, here are some Cancer Joking Tips. (Use with caution: if someone you know has cancer and is moping about it, it may be worth trying to lift their spirits with non-cancer-based jokes before you hit them with any LOLphoma material.)

1) If you know someone well enough to take the piss out of their hair, you can probably take the piss out of their cancer. (NB: Being physically capable of tweeting a stranger is not the same as knowing them.)
2) Pop culture references with the prefix ‘cancer’ are never not funny. I think I’d been in hospital about 36 hours when my pal Caroline asked me if I wanted to borrow a Game Boy and Pokémon Yellow “to help us understand your evolution from Cancermeleon into Cancerarizard”. I am still chuckling (and waiting for the Game Boy).
3) Saying things are like cancer is generally not funny. Saying cancer is like things is often excellent. eg ‘David Brent is like cancer, because it keeps getting worse and spreading to new areas of the media’ – shit awful. ‘Cancer is like David Brent, because it reminds you of, whilst still being better than, Slough’ – would certainly make me laugh, although if you know someone who’s got cancer AND loves Slough then go easy.
4) If you accidentally say something about death, don’t flap and apologise and try to backtrack. Commit. Paint a vivid conversational picture of your pal’s funeral, threaten to draw a cock on their coffin, whatever. Do not worry that you’ve put death into their mind. They are already thinking about death quite a lot.
5) If you wouldn’t have made a joke about something in particular pre-cancer, stay safe and leave it alone. I was fine with bald jokes whilst I was bald, because I’d never been bald before and wasn’t upset about it. If I’d been wearing a wig or got really into hats, it would probably have been a ‘no bald jokes’ hint. If I’d been on the receiving end of any fat jokes during my bloaty-steroid-face phase last autumn, the joker would have lost a fucking eye.

As someone is no doubt going to point out, this is all relatively easy for me to say now that I’m in remission. I’m in remission, guys! Everyone on Twitter knew a month ago, but I can see the sense in rejecting the hyperactive 24-hour news cycle and enjoying your news nicely aged. When Captain Cook was eaten by Hawaiians the news didn’t get back to England for eleven months, and that didn’t do anyone any harm. But anyway, if your feeling is that I’m in remission so I don’t get to comment on Cancer Stuff any more, my response is this: go to fuck. Go directly to fuck. Do not pass ‘GO’, do not collect £200, just go to fuck and fucking stay there.

I’m not going to go into much medical detail in this blog, but remission is very much not the end of the story and, in my case, the next treatment I’m due to have carries a 10% risk of death. That’s not a huge risk, but it’s there, and it’s going to be hanging over me for a while yet. And the one thing it’s hammered home is that there is Just No Point in getting stressed or upset about what’s coming up. Of course I might die. Will I shave even one basis point off that percentage by staring blankly into the abyss? I will not, and I refuse to waste what might be my last ever healthy month on fretting when there is so much good shit to do.

Good shit I am planning to do this April includes celebrating mine and Ella’s fourth anniversary, lining up a load of new books for hospital and finishing that ham (there really is a lot, hit me up if you want to come over and have some ham). I’m also going to be gritting my teeth for one last Anthony Nolan fundraising push, because we are so bloody close to hitting a hundred grand and I can’t think of a better omen with which to face up to the transplant.

A couple of weeks ago, we went to an AN event to meet some of the people who’ve been supporting us this last year and hear about the groundbreaking work Anthony Nolan is doing – not only in finding matches for people with blood cancer, but in actually advancing our knowledge of how blood and tissue typing works. As of this year, Anthony Nolan has become the first stem cell registry to use ‘Third Generation Sequencing’, which analyses more genetic markers than ever before to offer the world’s most accurate patient-donor matching. If you’ve donated to our JustGiving page, shared one of these blogs or spat in a tube, you are a real, measurable part of this progress and I hope you are as proud as I am grateful. It’s been such a privilege to play a small role in Anthony Nolan’s lifesaving work, and it feels even more important to me and Ella now that we’re expecting to bring our own new life into the world.

 

 

 

 

 

 

Got you again! Praise God for the gift of laughter.
 
***Next time on John vs. Cancer: mate, who knows. I’ve never got a blog into double figures before, we’re off the edge of the map. Probably no more April Fools, though.***
 
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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