***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.***
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.