John vs. Cancer #13: The Moving Finger Writes

***Previously on John vs. Cancer: our hero limbered up for his donor stem cell transplant, which mercifully didn’t take place on Ed Balls Day.***

I think this will be my final blog.

For the record, this isn’t because I’m dying, which I’m not – I’ve just run out of things to say. In the last year, I’ve repeatedly and loudly given thanks to the appropriate saints (St Peregrine Laziosi for cancer sufferers and St Francis de Sales for journalists) that I, John Underwood, for some time the least successful freelance writer in London, have been handed such a multifaceted and relatable beat to cover. Well, the #unique #content well has at last run dry. I’m in imminent danger of being normal again.

My last transplant, which took place almost three months ago, appears to have gone entirely to plan. Seventy per cent of ‘my’ immune system is now made up of my sister’s intrepid white cells; as my long course of immunosuppressants gradually tapers off to nothing, that proportion should get even better. I’m starting to work again, which is actually a huge relief – it turns out twelve months is my limit for lying around doing nothing. My hair, which came out in handfuls in early May, is staging a more determined comeback than S Club 7 (give it up, guys, we still remember which one’s the racist). My blood results are stable enough that for the past six weeks, I’ve had absolutely no idea what any of them are.

The reason I’ve finally returned to this dusty corner of the internet is that a year ago today, I heard the words ‘hepatosplenic T-cell lymphoma’ for the very first time. (After some consideration, I’ve decided that the word ‘cancerversary’ is completely shit.) Although I’m now one of only a handful of HSTCL patients to make it to any sort of anniversary, I feel more accomplished to have just about kept this blog going for a year, which is an all-time record for me.

Beating the odds of surviving this cancer feels like just that; a lucky break, something I’ve had virtually nothing to do with. My somewhat battered body has been a chessboard, Battleships grid or Hungry Hungry Hippos pond on which my doctors have staged one more round of their endless Tabletop Games Club against Death, the all-time club champion. They seem to have won, for now – but their opponent has the right to call a rematch whenever he fancies.

The events of the last few weeks have hammered home how lucky I’ve been. This month, two women that I knew a little and admired a lot – Alice Byron and Dr Kate Granger – have both died, Alice from complications arising from her stem cell transplant and Kate following five years of sarcoma treatment. Kate’s legacy, the inspired and inspiring #hellomynameis campaign, is visible in every hospital in the country. Alice, who completed her degree while receiving treatment, leaves an incisive and heartfelt blog (which, I was completely choked to discover, she started after reading the first instalments of this one). Both were appallingly young – Kate 34, Alice just 21 – and both had the same world-class treatment that cancer sufferers anywhere in the UK can expect to receive. It’s just the luck of the draw.

Even with the benefit of the best and most advanced treatment options in the world, cancer survival rates remain a bit of a crapshoot. There are risks at every turn, no two cases are alike, and sometimes the cards are stacked against you. Some of you will remember that this time last year I was given a two-thirds chance of responding to chemo, which meant a 33% chance of being sent home to die. I subsequently discovered that each round of the chemo itself had around a 1% chance of killing me. More recently, I was told my stem cell transplant – the one that’s even now wrestling for supremacy with my own cells – carried a 10% mortality risk. Every cancer patient has their own set of numbers like this, a personalised list of ‘chance of death’ cards that we’ve managed to dodge so far. You keep on dodging, or you’re out of the game.

Given all this, when you’re being treated it’s pretty important to know that your doctors will try everything and go to any lengths to give you the best treatment available. Historically, the NHS has meant that this does happen – the quality of your treatment is not dictated by the weight of your wallet. (When we first started raising money last summer, Ella and I were repeatedly asked by American friends how we could afford to fundraise for Anthony Nolan rather than for my medical care. If we’d had to do that, I imagine I’d be dead already.) But the UK’s place in the front rank of cancer-fighting nations is under threat, and I am fucking terrified.

Something that didn’t get a lot of coverage in advance of last month’s referendum (or, indeed, since) is the appalling damage Brexit is likely to inflict on medical research, which is more of an international project than ever before. My cancer colleague Mike Ormerod has covered this at some length on his blog, but in brief: our EU contributions make up a large proportion of the funding paid out by the EU to cancer research projects, whilst our scientists benefit enormously from EU medical research funding in a number of areas. Leaving the EU will gravely limit our ability to benefit from the practical advances made elsewhere in Europe. And that’s without even touching on the profound damage to the NHS that will be caused by any knee-jerk immigration proposals. Last year I said I was glad to have got cancer before the Tories destroyed the NHS; perversely, I feel even luckier that I got the bulk of my treatment in before Brexit.

Still, at least leaving the EU will mean the NHS gets that extra £350m a week, right? Right, guys? Wrong. Obviously this grandiose promise, from which Leave campaigners were scrambling to distance themselves even before all the votes had been counted, was complete bollocks. And it seems the next blow of the austerity axe is aimed squarely at cancer patients. In a cost/benefit review published a couple of weeks ago, NHS England has announced that it will no longer routinely fund second stem cell transplants for relapsed patients.

Lots has been written on this already – here’s Anthony Nolan’s open letter to Jeremy Hunt, signed by a string of leading doctors including my thrice-blessed consultant – and I don’t have much to add except this: unless this decision is reversed, people like me are going to die.

Not many people will die, of course – the NHS only carries out twenty or thirty second transplants a year. So that’s something. What’s more, they won’t all be people who are out there putting in a decent day’s work, cleaning for the Queen or keeping a job out of the thieving hands of an immigrant or whatever it is this government thinks we ought to be doing. I’ve been on various degrees of sick leave for fifty-three weeks, so I doubt my tax contributions are even covering my prescriptions (for which, as a sponging cancer patient, I do not pay). Second transplants aren’t necessarily preserving a give-more-than-they-take citizen to labour for Britain’s future glory. They don’t even, always, work. So what do we really stand to lose?

As far as I’m concerned, what’s at stake here is vastly more important than the trivial number of second transplants that actually occur. There aren’t many upsides to receiving a cancer diagnosis (unless, like me, you’re hugely relieved to finally have something to write about), but the one thing that might offer a crumb of comfort is the knowledge that your consultant, their team, all the nurses and orderlies and researchers that suddenly fan out around you like electrons around the nucleus of an atom, will all be working to save your life. That if you die – and you very well may die – it will not be for want of effort, for want of commitment. That all that can be done will be done.

I’ve got no reason to assume I’ll need a second transplant, beyond the fact that almost nobody has ever survived this disease. (In fact, I’m pretty desperate not to have one, because my sister/donor has moved to Mexico where she’s no use to man or beast.) But if I do need one, and NHS England’s 2016 cost/benefit analysis has not been put aside, then I may find myself right back where I was afraid to end up last summer; finding out that I’d timed my dodge all wrong, and I was going home to die. But next time, if there is a next time, my doctors won’t be losing their game of Hungry Hungry Hippos to Death; they’ll have lost to bureaucracy, to a faceless penny-pinching directive that considers a couple of dozen lives a reasonable sacrifice to take an expensive and elaborate treatment off the NHS’s books.

Perhaps they – we – are a reasonable sacrifice. Cancer kills 450 people every day in the UK, so thirty in a year wouldn’t even show up as a hiccup on the graph. But what we can’t afford to sacrifice is the promise that every cancer patient has the right to hear; that for as long as there is hope, they can expect to be treated. Without that, we lose a little of what separates us from the animals; although so far in 2016, I’ve yet to be convinced that we shouldn’t all drown ourselves and let the insects have a go at running the fucking planet.

If you agree with me, and with Anthony Nolan, that followup transplants should be funded when a patient’s consultant believes them to be the best course of action, please consider contacting your MP to say so. For once, I’m not going to end this blog with a plea for donations (not least because we finally hit our £100,000 target on World Blood Cancer Day back in May – thank you all so much), so if you’re relieved that there’ll be no guilt-tripping epilogue and then feel guilty for feeling relieved, you can consider this your penance. It is so easy, and so quick – you don’t even need to know your MP’s name – and if this issue doesn’t end up affecting you then I guarantee it will affect someone you love. Please write, please tweet, please do anything and everything you can until this appalling decision is reversed.

Well, I’ve said my piece. There’s plenty more mouthing off about this stupid illness for me to do – just as well, since we’ve got a book to finish – but I don’t think I’ll be back here any time soon. Thank you all for reading, for tweeting, for donating money and spit and time, for talking to me on the wards and encouraging me to eat more sausage sandwiches than any one body (particularly this one) could be expected to withstand. This has been a fucking odd year, but I wouldn’t have changed it for the world. John Underwood, Cancer Hero, signing out.

 
***Next time on John vs. Cancer: n/a***
 

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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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John vs. Cancer #9: Back on the Horse

***Previously on John vs. Cancer: whilst waiting to be saved from certain death by an autologous stem cell transplant, our hero got extremely fighty about his beloved NHS. He returns to this blog after an unprecedented two-month absence***

“Slow down. You’re moving too fast.”
“What’s he saying? Do I need to stop? Has the sedative worn off?”
“It’s alright, he’s just… singing.”

I’ve learnt a lot over the past six months, but there’s one piece of advice that I’m especially keen to share; when a doctor is drilling into your hip bone with a gigantic, bladed syringe, it’s an exceptionally bad idea to start murmuring a song with lyrics that sound in any way like an instruction. In my case, it was the 59th Street Bridge Song – a soothing number, sure, but one that would have caused a lot less trouble if I’d skipped straight to the second verse (which opens with the oblique but clearly not-actual-chat line “Hello, lamppost”).

Other life lessons I’ve internalised recently include ‘washing down chalky pills with wine makes the wine taste nasty’, ‘it doesn’t matter how nice your flat is, after six months of sick leave you’re going to want to set fire to it and move continents’, and that perennial favourite ‘if you neglect your cancer blog for too long, people start asking your mum if you’ve died’. Sorry, Friends Of My Mum. Next time you’re worried, check Twitter.

Eleven weeks of radio silence is a long time, mind, and I’ve had lots of plans to write a new blog – one for Christmas summing up the year, one for NYE with plans for 2016, one on the seximensiversary (!) of my initial admission (last Thursday) or my diagnosis (yesterday). The reason I haven’t is simple: I’ve had nothing to write. Long-memoried readers will recall that my last blog was written in the fun little 26-hour window between being fatally poisoned with mustard gas and given a literally lifesaving transfusion of my own stem cells, which took about forty-five minutes and involved huge needles, ‘CryoGloves’ and a terrifying wheely cauldron of dry ice and scarlet cellular matter, about three feet tall and looking for all the world as if a grenade had gone off inside R2D2 before Kenny Baker got out. This was the ‘autograft’, the first of two transplants that will hopefully effect a cure.

I’ve said before that the worst thing about being severely ill is the sitting about, and it’s never been truer than in the past couple of months. Like Homer Simpson waiting to pick up his gun as ducks, rabbits, Flanderses and Tom Petty taunt him from a safe distance, the first hundred days following my autograft – after which I’ll be able to have the all-important PET scan that determines my current closeness to death – seem to be stretching out into infinity. We’re currently on day 77, and if someone could arrange to slingshot me fowards in time by three and a half weeks I’d gladly trade them ten years down the line. (I obviously might not have ten years in the bank with which to honour this deal, but caveat emptor.)

Just as odd and discombobulating as the waiting itself, though, is the long process of adjusting to what Ella calls our ‘new normal’. I’m very slowly starting to work again, because it was that or go around setting fire to postboxes just for something to bloody do, and I’ve sadly accepted that if I drink beer on anything approaching an empty stomach, twenty to forty minutes later I will be very violently sick. I’ve got used to the pills I’ll be taking for at least the next year, the weird soft baby-hair that’s finally started to make its way out of my scalp, the very occasional walking stick. Most harrowing of all, I’ve got used to having a grown-up’s railcard, although that one isn’t strictly the lymphoma’s fault – it would much rather I’d checked out whilst my 16-25 card was valid.

And now, just as I’ve got used to being quietly at home, coping without the daily reassurance of blood tests and gradually weaning myself off Premium Creamed Potato, it’s time to remount the pale horse and head back to 5D. Back to Stew-on-the-Ward. Back to Cancerville. But for all that it’ll be hard to re-readjust, it’s going to be worth it. Yesterday I spent nine solid hours at Barts, and came away with the most concretely reassuring thing I’ve heard since last July: if these last two tests come out well, in two months’ time it’ll be full steam ahead with the donor transplant. A few days of immune suppression, a big glug of my sister’s stem cells, a dose of graft-versus-host disease as her white cells beat my ravaged body into submission, and then… that’s it. There’s about a ten per cent chance I’ll die, because these days I find things with no risk of death too boring to contemplate, but if I don’t die there’s a good chance I’ll be cured. Cured by the summer. Cancer-free just in time to get skin cancer or barbecue cancer or whatever it is people do when it’s hot.

That’s why, despite having previously said that “if anyone wants to cut into my bones for a third time they’ll have to kill me first”, this time yesterday I lay down like a good boy and let a charming registrar carve chunks out of my pelvis with her giant apple corer. I’d had an armful of Midazolam and an arseful of Lidocaine first, of course, but I was still EXTREMELY BRAVE and I’ll fight you if you say any different.

(I’d like to make it very clear that I was injected with Lidocaine in the general hip/arse area – the NHS frowns upon both anaesthetic suppositories and drug muling. Unfortunately, the apple corer still hurt like a bastard because, in the exquisitely tactful words of the registrar, “[my] hip bone is quite a long way from [my] skin”. I commend this turn of phrase to all doctors who need to stick sharp things into fat patients.)

So, that’s the big update. In three weeks or so we’ll find out whether my bone marrow remains clogged with evil lymphocytes, and a few days after that we should know whether my liver and spleen still glow like cancerous Christmas decorations when they get the rad-sugar treatment. If all’s well (and my consultant, whom God preserve, says he’s “very optimistic”) then we move into the final lap.

In conclusion: sorry about not blogging, but at least it wasn’t because I’m dead. I’m not dead. I may not even be dying.

***Next time on John vs. Cancer: your guess is as good as mine, guys. Maybe a Q&A? If there’s something you’d like better explained or an anecdote that you think I could tell in an even more self-aggrandising way, feel free to comment, email or (for preference) tweet.***

BUT WAIT, THERE’S MORE!

This is where I normally put the little blurb encouraging you to give to Anthony Nolan, which well over 4,400 of you have now done – thank you! (Can you believe we’ve raised ninety-two grand? Mental.) However, on this occasion I’m borrowing the space back for a fun, final bit of news that you may already have seen on Twitter and that didn’t fit into the blog proper. I’m thrilled to announce that Ella and I will be writing a book about what twats might be inclined to call our ‘cancer journey’. It’s being published by Picador, and all being well I imagine it’ll be out next year. Huge thanks to the thrice-blessed Daisy Parente, the justly exalted Francesca Main and everyone whose months of heartfelt support I will be cynically parlaying into jokes, and let no man say I haven’t made the absolute most of nearly dying.

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John vs. Cancer #8: Timing Is Everything

***Previously on John vs. Cancer: Rested, harvested and full of convoluted video game analogies, our hero finally got himself ready to head back to Barts and start preparing for a stem cell transplant, auspiciously scheduled for Friday 13th. That’d be today.***

I wasn’t planning to write a blog this week. In fact, part of the reason I wanted to bash one out just before being readmitted was to make absolutely sure I didn’t feel guilty or lazy during my pre-transplant chemo – I’d been told that this cycle could be an awful lot more grim than my previous rounds, and writing coherently on a cancer ward is difficult enough even when you’re not shitting water or croaking through a throatful of blisters. As it happens, the last six days of LEAM chemo have actually proved to be pretty manageable (although I’m assured that my galloping mucositis and total hair loss are definitely in the post). And since I’ve still got about six hours before the ‘high dose chemo’ is followed up by its traditional dancing partner, ‘stem cell rescue’, what I’m technically doing today is dying.

The plan, obviously, is to swoop in before I actually finish dying and sort things out a bit – but even being temporarily fatally poisoned feels like quite the daring gambit on a murky Friday morning. Yesterday’s infusion of Melphalan (you remember, the mustard gas from my last blog) is even now charging round my body killing every stem cell it can get its hands on. Once 24 hours have elapsed and it’s gone off the clock, I’ll be receiving five bags of my own defrosted cells with the intention of restoring my crippled immune system. I’ll have a week or ten days of being at enormous risk of infection, then with any luck I’ll start to get back to normal; normal levels of white blood cells, and a normal absence of lymphoma. It’s all pretty amazing stuff.

This is my fourth hospital stay and fourth round of chemo since July, and whilst the last couple of visits have been relatively samey I’m noticing some real differences in my treatment this time round. Before I say anything else, I want to be absolutely clear that this doesn’t mean I feel less well looked after, or less of a priority (although God knows I’m never sorry to be one of the less urgently ill patients on the ward). But what with one thing and another, this has been a very different experience.

The first and most noticeable departure from my previous chemo routine is the sudden importance of timing. Whilst the 30-hour days of ESHAP meant that rounds 1-3 inevitably ran late, this cycle has been reliant on fairly rigid timing and incredibly disciplined, well-structured care. In the last week I’ve been having two bags of IV Cytarabine a day, and although they’re relatively small they can’t be administered within roughly eleven hours of each other. That generally means that one bag is given by the night nurse and one by the day nurse, either at the very end or very beginning of their respective shifts. Somewhere in the middle I’ve been having several hours’ worth of Etoposide, which has to be delivered very carefully because, given half a chance, the drug can precipitate out of its saline bath. I’ve also needed two blood-thinning injections per day to guard against DVT – again, delivered just far enough apart to necessitate the involvement of two separate nurses on two barely intersecting twelve-and-a-half-hour shifts.

All of the above, however, paled into insignificance yesterday when I reached Transplant Day -1; the final day of chemo, and the one that earns this cycle its ‘high dose’ moniker. Once mixed in the chemo pharmacy, Melphalan has a shelf life of just ninety minutes, so getting it upstairs, onto a stand and into the patient (who must be given an hour’s worth of saline, plus IV steroids and antiemetics, immediately before the main event) is an incredibly precise affair. Yesterday, that meant the ward sister forgoing her break to make sure I got my treatment at the right time. “They won’t stop until we’re on the floor,” she said cheerfully, before heading off to work another three hours on top of the nine she’d already completed.

But the importance of timing goes far beyond fast-expiring drugs. Just as crucial as the to-the-minute delivery of my Melphalan yesterday were the conversations I had across the day with five or six members of staff, all of whom realised I was frightened and took a few minutes to chat and calm me down. The duty doctor talked me through some changes to my pills, one of the nurses commiserated with me over the miserable necessity of daily weigh-ins, and another teased me about my ongoing horror of the blood sugar monitor. Best of all, when the dinner trolley turned out to have one extra curry it was immediately given to Ella so we could have a rare meal together.

Nor does this consistently above-and-beyond standard of care stop once you’ve finished being actually treated for the day. Yesterday evening, my night nurse made a point of telling me she’d get my catheter redressed before the end of her shift, and then stayed late this morning to do so. The nurse who took my pulse and blood pressure at 6am fastened the inflatable cuff in near darkness rather than wake me up by putting the light on. Only this afternoon, my consultant popped in and asked about the progress of my NaNoWriMo novel (impressively static at fourteen words), and then let me babble on and ask convoluted medical questions until I was visibly more relaxed; never mind that I’m only one of some thirty-five or forty patients he’ll be personally visiting this afternoon.

With the ward currently almost at capacity, slightly understaffed and liberally decorated with ‘Enteric Exclusion Zone’ notices that indicate the rooms of patients in the grip of a chemo shitstorm (all shitstorms are enteric if you get right down to it), every single doctor, nurse and orderly on this floor and in this hospital is working all hours to keep us safe, get us well and make the experience of inpatient cancer treatment less unpleasant than it could very easily be.

Since I was admitted on Saturday night I’ve been visited by seven doctors, two physiotherapists, the ward manager, a clinical nurse practitioner, a dietitian, twenty-odd nurses of varying stripes, cleaners, dinner ladies, orderlies, hospital volunteers and a chap who came to test the smoke alarm. I have not had a moment’s cause to doubt any of their commitment to their jobs or to my welfare, whether their contribution to that is working all weekend to oversee my admission or mopping the floor of my room when I’ve carelessly wandered about with a dripping teabag. Everything that needs to be done is done, in good time and with good cheer, and when there’s not enough time then more is found – from coffee breaks, or lunch breaks, or time that should be spent at home and asleep. And I have never, not once in four months of regular inpatient care, heard anyone complain.

The NHS is not buildings or scanners or drugs, it is not holistic treatment for the deliberately obese or dance classes for otherkin or a massive con to give all our donated organs to immigrants, or whatever the Mail is telling you this week. It is people – people who earn less and work harder than they’d have to in the private sector, because the NHS has got a good case for being humanity’s proudest achievement to date and some things are more important than a pay rise. But not asking for a pay rise isn’t the same as mutely accepting a pay cut, or enduring even more difficult working conditions, or looking the other way whilst the flimsy safeguards protecting you from working dangerous hours are cut in the name of an unachievable, undesirable ‘7-day NHS’ that prioritises snappy headlines and dogmatic austerity measures over patient care. Of course the junior doctors are going to strike. Wouldn’t you?

As a patient who will most likely be directly affected by the industrial action planned for next month, I think it’s worth really nailing my colours to the mast. I fully support whatever action the BMA feels justified in taking in the face of this, the latest and most shameless in a series of capricious, underhand attacks on the majesty of the welfare state. What’s more, I think it’s extremely telling that the first junior doctors’ strike in our history will likely take place during the first months of the first Conservative government in 18 years. Like the National Minimum Wage, like tax credits, like the institution of the fucking weekend, the NHS is an achievement to which the Tories can lay absolutely no claim – as with all policies designed to support the many rather than the few, it is the exclusive work of the labour, and Labour, movement.

So when that festering zealot Jeremy Hunt has the gall, the absolute fucking brass neck to suggest that the proposed strikes will erode patients’ faith in the NHS and its dedicated, underappreciated workforce, I would like to respond thus: not in my name, you conniving fucking hypocritical management consultancy ideologue cunt. And if the incredible men and women in this hospital manage to cure me before you’ve driven them all overseas or out of the public sector, I will never forget that they did it against a backdrop of constant abuse and misrepresentation from your department. The continuing efficacy of the NHS in these trying times is a testament to its superhuman staff; your willingness to attack it in pursuit of short-sighted savings and the prospect of a political legacy is your lasting shame. Get fucked.

***Next time on John vs. Cancer: just a series of sketches showing the Cabinet dying from preventable diseases, I think. Nice to keep it simple once in a while.***
 
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 #7: It’s a Kind of Magic

***Previously on John vs. Cancer: After three months of blessedly uneventful hospital stays and frustratingly uneventful home visits, our hero descended into a sort of distilled sulk and insisted on blogging about it. He’s pulled himself together now, thank Christ.***

Well, here we are again. The pumpkins are in the outside bin, the sparklers have been conscientiously buried in sand, the sky has assumed the uniform grey it will now wear until March and there are fucking chocolate reindeer in the Co-Op. It’s November, and I’m going back inside.

It’s so long since these blogs were anything approaching current that it feels very odd to be writing about things from the very near past (or very near future) rather than retelling stories I’ve already told on Twitter. I suppose that’s the upside of having an extremely quiet couple of months – one mopey, self-indulgent blog was all it took to get up to date. And after the longest, slowest, least exciting autumn on record, stuff is finally starting to happen again.

Tomorrow – four months to the day after I left London for what then felt like ‘the holiday where I feel too crap to join in’ and what I now realise was ‘the holiday where I was on the brink of death’ – I’m heading back to Barts to resume treatment. I’ve now had three rounds of ESHAP chemotherapy, the last in late September, and I won’t be having any more. Although the typical number of cycles can vary widely, most chemo treatments exhibit distinctly diminishing returns, damaging the patient more and providing a reduced therapeutic effect with each cycle. In extremis, I could perhaps have got away with one more round of ESHAP; given that it involves 130+ hours of almost constant intravenous fluids, most of them extravagantly toxic, I’m glad I don’t have to.

My next treatment goes, like Gandalf and Snoop Dogg, by many names. Some call it hematopoietic stem cell transplantation, some prefer ‘autologous transplantation’, still others substitute ‘autogeneic’ or ‘autogenous’ or ‘autogenic’ (as you’d expect, Autogenic evolves into Autogenous with the use of a Thunder Stone). Those impatient Americans often plump for ‘auto-SCT’, as if something this amazing isn’t worth spelling out. Gits.

It’s often called a bone marrow transplant, which isn’t really accurate – believe me, if anyone wants to cut into my bones for a third time they’ll have to kill me first – and in my experience most medical staff refer to it simply as an autograft. It’s the first treatment I’ve had that’s got a realistic chance of curing me; not just subduing the cancer, but kicking it the fuck off my front lawn for good. Until someone finally cracks the hoverboard, it’s as close to magic as anything else we can do.

I’ve been thinking about magic a lot this week. With the unerringly shit timing of someone who spent most of the summer working in an unventilated greenhouse and was admitted to hospital ONE DAY after moving to a brand new office, I very recently began playing a video game that offers some two hundred hours of gameplay, approximately one hundred and ninety of which will still be untouched when I head back to Barts tomorrow. In keeping with genre conventions, healing in Dragon Age: Inquisition relies on the use of instant-effect potions and twinkly restorative spells. Some games, like my beloved Skyrim, feature a wide range of ingredients and a correspondingly expansive list of potential philtres and decoctions; others prefer a simple bottled panacea, guaranteed to tackle the direst pixellated wound or fictional contagion.

When medical treatment goes beyond the impressive but readily understandable mechanics of cut-this-off-and-sew-that-up, it can be tempting to treat the whole thing as so much sorcery, entirely beyond the comprehension of those without ten years of training and/or a pointy hat. Throughout this odd autumn, I’ve found that knowing more or less what the various drugs and scans do, and why they’re doing it, is more reassuring than simply trusting in the benevolence of the people treating me. I do that too, of course, but it’s much more fun if you can peek behind the curtain once in a while.

Despite all the long words and elaborate chemicals involved, chemotherapy operates on an elegantly simple principle. Cancer in all its forms is uncontrolled, aberrant cellular growth, whether that’s in the form of an ugly great tumour, a patch of melanoma or a swarm of diseased lymphocytes. Cells reproduce by dividing, so if you can step in at just the right moment and stop one cancerous cell from dividing into two more, you can theoretically spoil the party. All classical chemotherapy agents work by in some way fucking up cells as they try to divide – if you want any more info than that, step this way.

The slightly enhanced level of detail you’ll find on the other side of that link represents the most I needed to understand about ESHAP for my own peace of mind. There’s much more to learn than this – I’m vaguely aware, for example, that Etoposide works by battering a particular enzyme that’s vital for cell division to work properly – but since I lack both the time and the inclination to retrain as a doctor, I’ve had to make a call re: the amount of science I really need to grasp, and the amount I’m basically willing to accept as magic. I have no doubt that this threshold is different for every person and every treatment, but that’s where it is for me and chemotherapy; I know the names of the drugs, I know basically what they do, and I’m confident that the combination I’m being given has been rigorously tested, not just inspired by a prayer or based on the doctrine of signatures.

This time round, my comprehension/wizardry threshold is a fair bit lower. An autograft, as I was going to tell you before I accidentally spent four paragraphs talking about magic and enzymes, is a procedure that allows the use of ruinously high levels of chemo without significant risk to the poor sod absorbing them (hi). In my case, this means a treatment called LEAM – six days of chemo, the last of which will feature a drug called Melphalan. Like my old friend Cisplatin, Melphalan is related to mustard gas (in fact, if you get hold of enough of it you can actually use it as a chemical warfare agent), and its speciality is absolutely wrecking your bone marrow. For many cancer patients, this would be a really grim side-effect; for me, since my bone marrow is churning out the cancerous blood cells, it’s rather the point.

The good thing about Melphalan is that it does a very thorough job, and there’s a good chance it will sweep the cancer out of my system for good. The bad thing is that it will leave me without an immune system. That’s why autografts are also referred to as ‘high dose chemo with stem cell rescue’ – after you’ve taken the chemotherapy agents involved, you’ve got a few days to somehow replenish your stem cells or, the next time a cold goes round the office, you’re dead.

Given the amount I witter on about Anthony Nolan, you may be thinking that this is the point a stem cell donor comes into the picture – and you’d be right, sort of, except that in this case the stem cell donor is me. After my last round of chemo, I spent a couple of weeks giving myself injections of a nifty drug that massively boosted my stem cell production. Then, when my overworked bone marrow had given its all, I spent four hours bleeding into a centrifuge (and, once the cannula was removed, all over my trousers – kids, if a nurse tells you to press on a needle site you should ACTUALLY press, not just hold a bit of gauze over it like a ninny). My stem cells were separated, drawn off and biked straight to Harley Street to be frozen, and the day after my chemo finishes they’ll be pumped back into me to replace their dead comrades.

(Yes, this means I’m having my transplant on Friday 13th. I was originally scheduled to do all this three days earlier, but some other idiot actually objected to having a procedure on the 13th itself. I am firmly of the opinion that anyone who turns down medical attention because of the day of the month doesn’t deserve the treatment, or whatever they were going to have for lunch, or oxygen.)

There are all sorts of things about the autograft I don’t understand. I don’t know how my cells can be extracted, frozen, thawed and reinserted, and still do a job of work at the end of it. I don’t know how, as new research is suggesting may be the case, they can be reset by their experience and return with a hitherto-absent ability to spot and attack cancer cells. I don’t even really understand how a freezer works.

I do understand, though, that there’s about a 2% chance of this procedure killing me, because I’ll be completely defenceless for a week or so while my stem cells unpack and settle back in. I understand that even if it’s completely successful, even if I appear to be cured, I may not stay that way. I understand that we are a long fucking way from washing our hands of this raging inconvenience, and that if I make it as far as next year’s planned allograft I’ll be faced with perhaps a 10% chance of dying and a substantially higher likelihood of long-term problems – fatigue, skin complaints, jaundice. This is not a golden ticket.

BUT.

I know all of the above still sounds a damn sight better than dying back in July. I know my doctors, who don’t eventually have to take things on faith but actually understand the science all the way down, think that an autograft transplant, followed by an allograft transplant, represent my best chance of a cure – and that, incredibly, a cure is entirely possible. I am incredibly lucky to know that my sister’s stem cells are a perfect match for mine, so I won’t have to wait and hope for an unrelated donor to sign up to Anthony Nolan. And most importantly, given the ongoing and utterly unconscionable behaviour of the Secretary of State for Health, I know I will be cared for by talented, dedicated, compassionate men and women every step of the way, and that my treatment will be free at the point of use. And that, even more than all the ingenious drugs and futuristic transplants in the world, seems pretty fucking magical to me.

***Next time on John vs. Cancer: who knows, frankly. Best case scenario: good news about the transplant, plans for Christmas, maybe a new hat. Worst case scenario: a very short blog written by Ella. Vote with the red button… NOW.***
 
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 #6: Hitting The Wall

***Previously on John vs. Cancer: Having manfully sucked up his first dose of chemo through rapidly disintegrating forearms, our hero took possession of a bicep-mounted catheter to ease the trauma of future treatments, should there be any. He’s now… now… oh god, there’s far too much to sum up. Just give up on this bit and scroll down to the meat. Hasn’t Twitter taught you to skim read?***

Yesterday, my friend Clara told me something vaguely troubling: I haven’t updated this blog in so long that some of her friends, who know we’re acquainted in real life, have genuinely asked her whether or not I’m dead. As ‘get on and write a blog’ guilt trips go, this is pretty much the daddy.

I’d like to take this opportunity to a) confirm my continuing commitment to being alive and b) explain, if not entirely excuse, my absence. I haven’t published anything on here for more than a month, and the last blog deals with events that took place on or around August 10th, so John vs. Cancer is now trailing at least two months behind real life.

Two months ago, we still didn’t know if the first round of chemo had had an effect, and hence weren’t sure if I’d be going back into hospital for round two or going home to demolish as much of my wine rack as possible before I became too sickly and skeletal to lift a glass. I had recently been released from hospital, just four days after finishing said first round, and was hoping against hope that I’d manage to stay at home until my birthday without being recalled to the ward with neutropenic sepsis (infections prompted by a pitiful white count). I was thinking about getting my head shaved. Everything was quite exciting, and quite scary, and very much all to play for.

Since then, my life has been very boring. I don’t mean that nothing good has happened – or, for that matter, nothing bad – or that I’ve had nothing at all to write about, or that I’ve been too ill to write. I haven’t been ill at all, with the exception of a mercifully brief flirtation with anaemia and, obviously, the continuing presence of the high-grade lymphoma that may yet pursue me back to the ward, then to an even cleaner and shinier ward, and then to a little vase or a Tupperware or whatever Ella has to hand for my ashes. (My money’s actually on a Kilner jar, assuming she can bear to part with one of her bloody speciality flours.)

Plenty of good things have happened – both of our birthdays, a dear pal and my sister completing marathons for Anthony Nolan, being given a sword and immortalised in cocktail form and generally allowed to amuse myself as I like. Medically interesting things have happened to and around me, from the fun and frolics of last week’s stem cell harvest (more on which in a future blog) to the plodding tedium of another blood sugar balls-up. The first round of chemotherapy turned out to have had an “immediate and profound” effect – hurrah! – so I had two more rounds in just under a calendar month, before being discharged in late September to spend a month mostly at home.

In preparation for said harvest, I spent the first thirteen days of my time at home religiously filling myself with something called Granulocyte-colony stimulating factor, which comes in a tiny vial and has to be rehydrated with saline and then injected into the stomach or the top of the thigh. In happier times I’d have got fifteen hundred words out of that little adventure alone. Needles! Drugs! Blood all up my t-shirt! I’ve got a secure box for used sharps in my living room, for fuck’s sake. It was just like Trainspotting, if Rents and company had really cared about the safety of their bin men.

Anyhow, all this gay talk of drugs and ashes has distracted me from my point, which is to spend at least a thousand words sulking. You see, it turns out that the worst thing about cancer, the thing that can completely put the kibosh on your hitherto-successful blog and determined fundraising efforts, is not ‘it might kill you’. It’s ‘it gets in the fucking way’. I absolutely cannot tell you how sick I am of being in this flat, surrounded by things I love and never used to get enough time with – books, Ella, the classic board game ‘Kingmaker’ – and just wanting to be doing. Just out in the world, in the office or having a wander or whatever, without having to check that the walk’s manageable and I can get a cab if I need to and I’m not going to miss my evening pills. I want to see friends and not say a word about how I am or how we’re coping or when I’m going back into hospital. I do not want, ever again, to explain how a stem cell transplant works.

With no disrespect at all intended to the many brilliant people who work there, I don’t want to spend another minute of my life at Barts. I don’t want to go back to the lovely, welcoming ward where I spent my first and second rounds of chemo, or the slightly less convivial ward where I moped my way through round three (that was when I went a bit anaemic, and refused visitors, and generally started to work myself up into the filthy mood that I’ve been in for the last three weeks). I don’t want to have to tell another Uber driver that if you turn down Little Britain just as you come off the roundabout by the Museum of London, you can avoid the inevitable traffic jam in the one-way system by St Paul’s station, and I especially don’t want to have to ignore any more fucking strangers who feel entitled to chide me on Twitter for using Uber rather than a black cab. I do not want, really, to be on Twitter at all, because I feel guilty for not replying to well-wishers or drumming up funding or having anything new and witty to say about this incredibly boring process. It’s disproportionately hard to simulate good cheer in 140 characters, and the last thing I want is to stealth-bomb seven thousand innocent timelines with woe-is-meing when they came for light-hearted cancer commentary. (I don’t mind woe-is-meing on here, because you have to go out of your way to read it.)

I want to be able to look in the mirror without being reminded that, following the brief but cherished weight loss that accompanied my first round of chemo, I’m now fat again thanks to a combination of steroids, blood sugar medication, no energy for exercise and a disinclination, given that I can’t do anything else fun, to eat very sensibly. I’m also mostly bald, which seemed like a good idea at the time – get the jump on cancer, make it my decision and so on – but, since my hair hasn’t really fallen out and grows very quickly, has just become a way to spend £16 per fortnight on emphasising the fact that I look like a crooked nightclub owner from an ITV drama set in the North, all ill-fitting suits and cracking walnuts in one meaty fist. For the absolute avoidance of doubt, I do not want to be fat or bald. They are rubbish adjectives. At least ‘dead’ has some élan.

I really thought losing my hair was a good plan – preempting the inevitable in a stylish and controlled way. The idea was that I’d shave my head, what little grew back would fall straight out again, and I’d be a cueball for the duration; in fact, I feel even less in control of my body now that it demands twice-monthly visits to the barber. And at every point in my skinhead-stubble-buzzcut-skinhead cycle, I now look like someone who might actually punch you, although probably only once or twice before getting puffed out and having to have a sit down. (I’ve never made a habit of hitting people, although I used to do a nice line in punching walls when I was a furious youth. You can, perhaps, imagine how badly suited I was to furious-youthdom if I tell you that on several occasions in my first year of uni, I punched walls with such force that I snapped the horrifically naff coconut-shell rings I insisted on buying from Camden market. The only reason I haven’t revived this habit is that we live in a jerry-built flat with walls made of plasterboard and blind hope.) I am extremely bored of going to the barber and, every time my normal chap isn’t free, having to tell a new razor-wielding Turkish bloke why I want a haircut that patently doesn’t suit me. I literally can’t get my hair cut without having to talk about fucking lymphoma. It is so, so dull.

This is the thing nobody warns you about with cancer: you will spend so long being the subject of almost every conversation, explaining your history and worrying about your blood and looking at your results and thinking about your chances and just going ON AND ON, that eventually you just get totally, irredeemably sick of yourself. I don’t especially wish I wasn’t ill, because I’m pretty sure I’m going to get better and it seems a shame to wish away non-fatal learning experiences. But I would fucking love a break from being me. I’d even be happy to take a Being John Malkovich-style holiday in another cancer patient’s head, because at least there’d be some variety – a different strain, an alternative chemo cycle, maybe even a proper prognosis! More importantly, it would offer a fleeting change from just being stuck in here, in this traitorous body, gradually becoming so fucking bored that I convince myself nobody wants to read my blogs at all. After all, what could I write about? I don’t do anything. And that, not the fucking lymphoma, is what feels like it’s killing me.

***Next time on John vs. Cancer: hopefully, now he’s got all that out of his system, something chirpy about stem cell transplants. Of course he doesn’t mind telling you what they are. Glad to.***
 
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 #5: PICC (a tube), I Choose You!

***Previously on John vs. Cancer: after a week or two of hanging around in hospital waiting for something to happen, our heavily cannulated hero cracked on with a) his first and possibly only round of chemo and b) becoming a sort of social media mascot for lymphoma. All a bit odd. We rejoin him more or less as the last tube is disconnected.***
 
Towards the end of Chemo Round One, I began to run into problems. The classic side-effects – nausea and vomiting, ulcerated mouth, suddenly wanting to experience a list of incredibly trite activities – had entirely passed me by, but after a few days of concentrated intravenous poison my veins were in pretty poor shape. My chemo regime (much, much more on which in my last blog) required that I be fitted with two cannulae, one for drugs and one for saline, and although a clear cannula should be good for at least three days’ use (pre-chemo, mine were lasting nearly a week), by day three I was having at least one of them changed every day. I was also being bled every day, in whatever drug-free window the phlembotomist could find. Two or three needles per day may not sound like much, but when you’ve already got three burst veins and scarcely a platelet to call your own, it’s more than enough.

For a little while, it looked as if my arms might be spared the prospect of death by a thousand cuts. In the days preceding my first toothsome bag of Etoposide, several nurses had referred (without elaboration) to me “getting a pick”. Working from context, I assumed that a pick was some sort of heavy-duty cannula – the phlebotomists use ‘butterfly’ needles, so the nickname didn’t seem that odd. I was eventually told that a PICC, or Peripherally Inserted Central Catheter, was one of the preferred delivery methods for chemo. A thin line that enters a vein in the upper arm and heads straight to the top of the heart, it neatly eliminates the need for both cannulae and bleeding – the drugs (and the saline) go in via two dangling plug affairs, and blood can be syringed out for tests without ever needing to break the skin.

A PICC sounded like just the thing. But as Round One, Day One crept closer, I hadn’t heard anything about when mine was going to be fitted (a five-minute procedure, I’d been assured). Finally, the day before my chemo started, I was told that I’d been booked in for the day after it finished. My cannulae were holding up well, the clinic was very busy and, reading between the lines, there were other poor sods whose veins were more in need of a break. This didn’t seem like a problem – there’s something reassuring about being well enough to take the scenic route whilst some other poor sod is rushed to theatre – and I felt obscurely proud of my plucky little blood vessels. They didn’t need some bloody plastic interloper. At least, not yet.

Because here’s the thing: catheters are bad news, aren’t they? Obviously, pretty much everything that’s designed for hospital use – bone saws, Betadine, bedpans, and loads more stuff that doesn’t begin with B – is bad news for someone, but generally medical gear is either pleasantly humdrum or excitingly outré. Gosh, a bone saw! I’ve seen them on House. Ah, a bedpan – just like at Nan’s house. D’you see? Hospital stuff is either dangerous and interesting, or suffused with essence of beige. Catheters – boring but absolutely necessary, keeping you alive in the most cobbled-together, we-designed-this-in-a-shed way possible – aren’t thrillingly rarefied OR reassuringly everyday. A catheter is perhaps the only thing on earth that manages to be both traumatising and dull.

Deriving from the doubly appropriate Greek verb meaning ‘to let down’, the word ‘catheter’ now refers to any tube that’s put into the body when the tubes God put there aren’t doing their job properly. I think this is why they feel so thoroughly depressing – they’re not generally a treatment per se, they’re just a workaround for something that oughtn’t to matter. Catheters are a sheaf of folded beer mats under the leg of the wobbly pub table that is your (or in this case my) living body, and that’s ghastly. They’re not weird or life-threatening enough to be very interesting, but not everyday enough to be normalised. You won’t have come across one unless you or someone you know has the sort of dull chronic condition that means their veins are wearing out, or they can’t piss properly, or their arteries have narrowed and need forcing open with a weird balloon. Maybe it’s to deliver insulin, maybe to drain an abscess. Something fucking rubbish, anyway.

For most people, I expect, ‘catheter’ is permanently allied to ‘urinary’, the Dolorous Adjective. Nothing good ever starts with ‘urinary’, does it? Urologists probably spend all day trying to find ways to talk about their jobs without using it. People who do urinary things for fun definitely don’t use it. Urinary means tract infections, incontinence and, of course, catheterisation. Happily, the closest I’ve come to needing the D.A. scrawled on my chart is when I was tempted, SORELY tempted, to create a urinary disturbance by flinging bottles of piss (mine, anybody’s) at the imam, my last and worst roommate. My catheter was to be strictly venous – a long, blue, damning reminder that when push came to shove, my veins weren’t up to scratch.

Before I started treatment, I was quite excited about having my PICC put in. Once it became apparent that I wasn’t going to get one, I stopped thinking about it (in fact, I was quite relieved to hear that I was well enough not to need one immediately). By the end of the first round of chemo, which dragged on for seven days and left my arms looking like a painting of a warzone rendered entirely in blackberries, I didn’t want to see another needle ever again – and I certainly couldn’t imagine where the nurse, charm she never so wisely, was proposing to introduce a half-centimetre tube into my battered veins.

If you were on Twitter on the morning of August 10th (yep, I’m now blogging nearly a month after the fact, because cancer doesn’t somehow cure you of being a lazy writer), I imagine you’re already cognisant of how nervous I was about having my catheter fitted. I believe the word ‘PICC’ trended worldwide for about half an hour, fuelled exclusively by the eight hundred million whiny tweets I sent immediately prior to visiting the day unit and its array of tubes, blades and people intent on putting both into my precious arm-meat. Of all the times I’ve fled to Twitter in a panic over the last couple of months, this was the occasion when I genuinely don’t know how I’d have coped without a phoneful of cheerful strangers.

In the hour or so before the procedure, I heard from nurses who put PICCs in for a living, patients saying their PICC was the best thing that had ever happened to their treatment, and one chap who’d just let his heal over when it was no longer needed because it wasn’t worth the trouble of removing it. The spectrum of available experience was, as it always is on Twitter when you ask the right questions, completely incredible. Having been so frightened that I was seriously on the verge of withdrawing my permission for the operation, I found myself heading up to the seventh floor (on my own! No wheelchair, no porter!) with a song in my heart, just keeping things warm for the tube that would shortly be joining it.

Obviously, since I’d convinced myself it would be painless and over in a few minutes, the PICC insertion was completely horrible. This was in no way the fault of Stephanie, the absolutely lovely nurse who took care of the actual bloody bit – it was 100% a John-made cockup, meticulously planned and executed by my subconscious without me needing to be involved at all.

The theory behind a PICC insertion is very simple. Using an ultrasound machine, you find a vein in the upper arm that’s at least twice as wide as your intended catheter (otherwise you’re asking for a clot). Having numbed the area, you cut into the vein and insert the catheter, which contains a metal guide wire. Veins all go straight to the heart, so simply feeding the tube into the vessel should see it safely home – but just in case, a metal detector thing on the patient’s chest tracks the wire’s progress. Once it’s made it into the top of the heart, the wire is withdrawn from the catheter and the entry wound dressed. A cursory X-ray checks that everything’s where it should be. And that’s it.

Alas, there’s one main sticking point with the above – if you’re stressed, scared, in pain or simply hyperaware of what’s happening to your right arm, your veins are quite likely to go into spasm, shutting down completely and making it very hard for even the most dexterous nurse to ram a tube up them. Stephanie had no problem finding a nice fat vein, but as soon as she went near it the bastard clamped down like a Tory government determined to solve the problem of welfare by killing all the poor (oh shit, looks like some TOPICAL SATIRE in the middle of this catheter blog! You’d better believe it). And oh god, it hurt. We’re not talking bone marrow biopsy bad, not quite, but it’s worth bearing in mind that this vein was about 3cm into my arm. That’s an inch and a bit of flesh that has to be bisected before the catheter can be poked down and into the pulsing vein beneath.

Stephanie gave me another two shots of local anaesthetic and tried again. I managed not to burst into tears, but only by swearing foully at every inanimate object in my field of vision; I was looking very determinedly away from my right arm, which saved Stephanie from being included in the barrage of abuse. I fucking told that ultrasound monitor where to get off, though. None of it did any good – my vein spasmed shut, the catheter had nowhere to go and the whole thing had to be hauled out again.

On the third attempt, I did burst into tears. I think by now my arm had been anaesthetised six times, and I was still feeling every tug and poke. I’d given up on swearing, and completely lost track of my conversation with Stephanie despite her heroic attempts to keep me chatting. I just lay and whimpered, my whole right side throbbing with every tweak of the tube. Surely she’d give up soon – this was clearly, indisputably not going to work. The way is shut, Stephanie. It was made by those who are dead, and the dead keep it. Bin the tubes, give me a fresh cannula and take an early lunch.

And then, almost without me noticing, it was done. “I felt you give up,” Stephanie told me later. “Your whole body relaxed; you’d obviously just resigned yourself to it being a failure.” Never let it be said that resigning yourself to failure is in any way a bad move – that’s what I’m taking away from this. There wasn’t even much pain, although I was warned that the three failed insertions would mean some (more) fairly spectacular bruising. The whole thing had taken something less than an hour, of which at least twenty minutes had been spent covering every possible surface with those paper blanket affairs. All that remained was the routine X-ray, and then-

“The thing about the X-ray is that, although I used an extra-long catheter, your chest is so broad that the end might not have actually reached your heart. Hopefully it’ll be fine, but if not we’ll need to take it straight out.”

Heavens. I’m not a medical man, but I’m certain something could have been done in advance of that incredibly painful and POTENTIALLY USELESS procedure to find out whether the catheter was long enough. Measuring it? Measuring me? Draping it artistically across my chest to see whether it ended up in broadly the right area? Anyway, it all turned out to be fine – better than fine, in fact, because whilst I was in Imaging another patient recognised me from the Times. It would probably have been worth having to have the PICC straight back out for that, if I’m honest.

Nearly a month after being fitted, my PICC is the best friend I’ve ever had. My blood tests are now painless and nearly instant, any amount of chemo can be delivered without the pain or inconvenience of cannulae, and one particularly adept nurse has successfully changed my IVs without even waking me up. I am thrilled to have it and wholeheartedly encourage you to acquire one if you end up in a cancery situation and there’s chemo on your horizon. You do have to wrap your arm in clingfilm when you shower, which will never not be odd, but otherwise it’s a perfect solution to what had been an extremely wearing problem. Catheters, it turns out, are not so bad after all. (Except the piss ones. Piss catheters are still really grim.)

 
***NEXT TIME ON JOHN VS CANCER: Countdown to Neutropenia – John has escaped hospital, but for how long? Place your bets now!***
 
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 #4: Give Me Cytotoxins or Give Me Death

***Previously on John vs. Cancer: with the most violently unpalatable cocktail of his life fast approaching, our hero was faced with the realisation that unless he took matters in hand, he might well be the last in a long line of heroes. Happily, we never have to talk about any of that ever again – which is just as well, because a) he’s still dying quite fast and b) there’s a bag of poison over there with his name on it.***

Following the excitement/trauma detailed at self-indulgent length in the last instalment of this blog, I had a few days more or less to myself before starting chemotherapy. Whilst they quietly pass in the background (you’re not missing much; various pals came to visit and I spent a lot of time watching clips of Robot Wars and eating smuggled meatballs), I thought it might be a good idea to explain a little about how chemo works both generally and in my case – it’s taken me weeks to get a handle on it all, so I might as well pass on what I’ve picked up. By all means skip this bit and head down to the as-yet unwritten paragraphs in which I intend to bitch at length about my roommates, but I think it’s all quite interesting.

Chemotherapy (from the Arabic and Greek for ‘alchemy’ and ‘healing’), is the treatment of cancer using drugs. Other options include radiotherapy (also very good), petitionary prayer (logically inconsistent and theologically bankrupt) and ozone therapy (utter fucking bollocks, despite the recent protestations of one awful knob on Twitter; apparently anyone who’ll take a doctor’s advice rather than self-medicating with cannabis oil is a shill for Big Pharma). I didn’t fancy the last two, and radiation only really works on solid tumours, so chemo it was.

As a rule, chemo is delivered in preset regimens that combine the effects of various drugs over a series of short, intense cycles. As it happens, the first successful chemo regimen was developed to treat lymphoma, and fifty-odd years on there are all sorts of shiny new treatments for what I now fondly think of as the shit-for-blood brigade. These days, the favourite treatment for non-Hodgkin’s lymphomas is a nifty little set menu called R-CHOP, which is both an acronym for the drugs it contains and the sort of name I’d have given to a droid if I’d ever had few enough friends to write Star Wars fanfic.

Unfortunately, for reasons I haven’t had any inclination to discover, one of the very few things we know about hepatosplenic T-cell lymphoma (that’s my cancer, do try to keep up) is that R-CHOP doesn’t work on it – in fact, there’s some evidence that it may have a negative effect. Told you it was a hipster one, didn’t I? This means that I’m on a slightly more retro treatment called ESHAP, which stands for:

Etoposide, a topoisomerase inhibitor. As far as I can make out, this means it attacks a particularly crucial enzyme during cell division, compromising the genome and leading to cell death. The other week one of my cannulae got dislodged and some of this spilt on my leg while I was having lunch. I was going to wipe it up and apply myself to that day’s cheery mound of stodge-and-custard, but a nurse drifted in, went fully mental and fetched a special ‘cytotoxic spillage kit’ with which to sterilise everything in a half-mile radius, so I’m guessing it’s not an especially caszh-caszh kind of drug.
Solu-Medrol, which is the American brand name for a steroid known over here as Methylprednisolone. Straight up dissolves lymphocytes, no messing. Also the thing that’s continuing to give me steroid-induced diabetes, although that’s pretty much calmed down now (he says, typing with one hand because he’s currently eating a biscuit).
High-dose Ara-C. Otherwise known as Cytarabine, this is a really clever one. It’s a combination of cytosine, a DNA base, with an arabinose sugar (I thought sugar just came in ‘white’, ‘brown’ and ‘blood’ flavours, but what do I know?). Cytosine normally combines with a sugar called deoxyribose to make deoxycytidine, which is an important constituent part of human DNA (that’s deoxyribonucleic acid – come on, I know you remember this stuff from GCSE Biology). Cancer cells are absolute whales for sugar, so they hoover up the Cytarabine – which looks pretty much like deoxycytidine in a poor light – and incorporate it into their DNA when they divide. Then it kills them.
Platinol – we say Cisplatin, the Americans say Platinol, let’s call the whole thing off. It’s made from actual platinum because I make it raiiin, and it causes DNA crosslinking (exactly like mustard gas), which causes cell death and, if you’re not careful, person death. This is the real bastard – my dose, which is pretty high because I’m a massive human, is 55mg delivered over 24 hours, with a couple of litres of saline to dilute it. In terms of actual weight of drugs, that’s 11% of the quantity of active ingredients you’d find in a single tablet of paracetamol. It’s also why every bag of actual chemo (in this list, that’s everything but the steroids) has to be checked off by two nurses, one of them reading the bag and the other one checking my hospital bracelet, to make sure it’s definitely my dose – I’d probably be alright with someone else’s (see above re: being a massive human), but if some little seven-stone weakling on the verge of an immune crisis got my Cisplatin it would fuck. them. up.

On top of the above, my personal chemo-plus regime also includes intravenous Ondansetron (for nausea) and daily or twice-daily tablets of folic acid (boosts red blood cell production), Fluconazole (warns off oral funguses that might otherwise take advantage of my damaged immune system), Aciclovir (ditto, but for viruses generally), Allopurinol (stops my kidneys packing up from all the extra dead white cells they’re having to shift), Ciprofloxacin (antibiotic), Gliclazide (for that pesky blood sugar), Lansoprazole (protects against steroid-induced stomach ulcers) and Domperidone (even more antinausea, and THRICE daily). It’s a wonder I ever have time to get round to any Premium Creamed Potato, frankly.

Right, now you’re basically up to speed I’ll get back to poorly constructed anecdotes and swearing. (If you chose to skim through the pharmacology lesson – and why wouldn’t you? – this is probably a good place to rejoin the group.) I was told that my first (and, of course, quite possibly only – more details in blog #2, where I went on at some length about my chances of not responding to treatment) round of ESHAP would last four and a half days, which turned out to be arrant nonsense of the sort that we all blithely accept from people who, like doctors, plumbers and Amazon couriers, have access to forbidden knowledge. (We should do less of this, because if everyone made a fuss about the sheer frequency with which sentences like “It’s already out for delivery, sir” or “I’ll have that part before the weekend, squire, and I’ll definitely remember to come and fit it” are employed in our day-to-day lives then we might get something done.)

ANYWAY, it transpires that chemo days not only bear no relation to the calendar but also exhibit no internal consistency either. Exhibit A: the first four days of my chemo regimen each consist of 46 hours and 45 minutes of intravenous drugs, except for day one which is 48 hours and 45 minutes. Happily, the two longest infusions (24 hours of Cisplatin and 19 hours of saline) are able to run concurrently, taking the total down to a broadly manageable twenty-seven and three quarter hours (again, plus two on day one). You might, on this basis, assume that the half-day at the end would be somewhere in the fourteen-hour range, but in fact (Exhibit B) it’s a baffling thirty minutes long – just enough to squeeze in one extra bag of steroids and make sure I have an extra few days of shying away from cake and being stabbed in the fingers every six hours. That’s the sort of logic we’re dealing with here.

Once you factor in the need to flush every line between every dose, the double-stamp requirement on every chemo bag, the fact that even when you only need one nurse you’re inevitably competing with other patients, the speed with which chemo destroys your veins and wears out your cannulae, the challenge of fitting in an occasional shower and all the rest of it, a full day of chemo can take anything between about thirty and thirty-six hours. My first cycle ran from 3pm on the Monday after my diagnosis to about 11am on the Sunday, which was actually on the prompt side, but my God, it felt endless at the time.

To be fair, though, ‘a bit fidgety’ is a pretty good way to feel when you’re on high-strength chemo for an ultra-aggressive lymphoma that had you, ten days beforehand, on the genuine verge of death. The truth (and I know this isn’t very interesting if you’re here for gory details) is that since about a day after being put on steroids back in July, I haven’t felt ill at all. The classic chemo symptoms – nausea and vomiting, loss of appetite, swollen and ulcerated mouth, tendonitis, all the rest of it – have completely passed me by both during and since my initial round of treatment, probably through a combination of good luck and being reasonably young and robust. Whatever the reason, the chemo itself was pretty solidly anticlimactic; and while it’s always nice to be the most boring patient on the cancer ward, I was less thrilled with also being the most bored one.

I found two main ways of passing the time during Chemo Round One. The first was hating my various roommates, who came and went but generally stuck to the principles of a) being worse than the one before, b) staying longer than the one before and b) getting progressively more awful the longer they stayed. Just like with the carefully planned combinations of chemo drugs, these factors combined in what I believe is called a synergistic fashion to make me feel progressively more tempted to smother the fuckers in their sleep. Sam the cheery electrician was the only one I managed to have a normal conversation with, but he left the night before my diagnosis. In fact, my very first use of the cancer card – barely five minutes after I’d actually been issued with it – was to beg my consultant to be allowed to move to the newly empty window end of the room, “given everything that’s happened”. Bless the man, he moved the bed himself.

After Sam’s departure I had a couple of quiet days before being joined by Anonymous Roomie 1. He stayed just one night and wasn’t, to be fair, any real bother, although I did overhear him telling a nurse that he didn’t smoke or drink and “find[s] it difficult to finish sandwiches”, which (assuming none of them were symptoms) made him instantly the most boring man on earth. He disappeared whilst I was having my PET scan the next morning, and I hope that wherever he’s gone he has at least learnt to tackle a sandwich like a grown-up.

Anonymous Roomie 2 was a young man who was admitted from the Barts hostel, a B&B/halfway house for people who live a long way from the hospital or are nearly-but-not-quite ill enough to need admission. In the case of AR2, I think his white count had dropped into the danger zone and he’d been brought onto the ward in the hope of warding off an infection. He spent two days looking basically dead, then perked up and started sneaking in huge volumes of visitors, who typically arrived around an hour after the end of visiting hours and produced endless boxes of chicken and chips, like a slightly more urban version of Brittany Murphy’s creepy dad in Girl, Interrupted. My only real gripe with AR2 was the entire evening which he and a particular mate spent discussing a) AR2’s time on the West Ham youth squad and b) the mate’s plan to get a second-hand Bentley, both of which are shit things to talk about, but having until recently thought he was literally dying in the next bed it was hard to resent him too much. This wasn’t really a problem, though, because it meant I could save up my resentment for my third and final roommate.

I did learn my third roomie’s name, but I feel like it wouldn’t be very fair to use it, so I shall call him the Imam. That’s how he introduced himself to me during our one conversation, which went as follows:

Self: *potters past the Imam’s bed, inadvertently makes eye contact, smiles awkwardly*
The Imam: I am an imam.
Self: Oh, really? Jolly good. I’m John.
The Imam: How many children?
Self: Errm, none. I’m 25.
The Imam: That is very bad.
Self: …
The Imam: *closes eyes*

The Imam served a dual role during our week or so together, uniting the disparate fields of ‘chemotherapeutic cautionary tale’ and ‘raging pain in the arse’ in one grumpy bearded package. He was undergoing a fairly harsh round of chemo – harsh enough that for several days his immune system was being supplemented with his own previously harvested stem cells, which is a thing you only really have to do if the treatment is completely eradicating your bone marrow along with the cancer. This meant a lot of throwing up, which was unpleasant but hard to hold against the poor sod. If he’d stuck to the vomiting I think we might have got on.

He didn’t stick to the vomiting. If he wasn’t throwing up he was being horrible to the nurses, if he couldn’t think of any complaints he was praying in an endless monotone and/or listening to an exceptionally tinny call to prayer on his phone, and if he got bored of that fun little combo he was ignoring his drip stand alarm (which was usually bleeping because he’d gone to the bathroom in the night and neglected to plug it back into the wall) for hours and fucking hours until I had to ring a nurse and beg them to silence either it or him. I tried very hard to be patient, but when he was wheeled off for tests one night and abruptly moved to a side room without ever returning, I offered up a small grateful prayer of my own. (As I type I’m back in Barts, and he’s in the room next door. We haven’t resumed our conversation, and unless I acquire some kids to tell him about I sort of doubt we ever shall.)

The second way I found to kill time was, as you may know, by becoming an extremely accidental news story. On evening one of my chemo, plodding through the various short bags as I approached that dreaded 24-hour dose of Cisplatin, I set up a JustGiving page in the hope of scraping together a few cancer-fuelled pity pennies for Anthony Nolan (on whom more below, and at the link, and on Twitter, and everywhere really). I thought five hundred quid would be a nice target; it was one that we might feasibly meet by the time I left hospital in three and a half weeks’ time, and funding the inclusion of five new potential donors on the AN stem cell register felt like a worthwhile achievement. Ella (whose idea the fundraiser was) talked me up to a round thousand pounds, which I thought borderline vainglorious but decided probably wouldn’t actively put people off donating. I also wanted to wait and launch the page alongside the first instalment of this blog, which I was planning to write the next day, but we ended up putting it live on its own because, as discussed, chemo is boring.

The fundraiser hit its initial goal of £1,000 in about forty-five minutes, and by the time my first day of chemo wound up we were on just over £15,000. Over the next couple of actual calendar days, I ceased to be John Underwood, sometime journalist, and became “Twitter fan John Underwood” (The Times), “Cancer sufferer John Underwood” (The Daily Telegraph), “Stem Cell John (The Sun) and, unforgettably, “gnarly” (FHM). The very first of these blogs was republished by the New Statesman, then the first two made it into the actual physical Times along with a very flattering profile and some equally unflattering photographs. I somehow developed a habit of wearing increasingly elaborate hats in Instagrams that were then appropriated by the nation’s media. And by the time the last tube was disconnected and my first round of chemo staggered to an overdue halt, we’d raised fifty thousand pounds for Anthony Nolan. (It’s just over seventy-seven grand now – ninety-three when you add Gift Aid – and if you’ve sent a donation or spat in a tube or retweeted one of my endless nagging tweets then I will love you forever).

Becoming very mildly famous because you might be dying is an extremely odd scene, but it has its perks. We managed to keep things from becoming too insane by refusing all broadcast media requests – after all, what could I have told Newsnight about cancer that they didn’t already know? It’s a fucker, and we ought to cure it, and eventually we will. Interview over. Twitter’s been largely brilliant, albeit with a few mad twats cropping up to tell us that chemo only works in 3% of cases and so on. If I survive this whole palaver I’ll come out with my career in its best ever shape. And, displaying a nose for business that rivals her demonstrably impressive nose for cancer, Ella has managed to parlay the inconvenient ‘boyfriend has cancer’ situation into an excellent series of columns on, of all things, lipstick. Anthony Nolan’s registered a 46% rise in requests for stem cell donation test kits, I’ve twice been recognised by strangers (one of them called me “the infamous Underwood”, which was arguably the highlight of my life to date), and my friend Felix has invented a bone marrow cocktail named after me. And, best of all, I ended up not being remotely bored.

***NEXT TIME ON JOHN VS CANCER: Tube is in the Heart, sung to the tune of the Deee-Lite song of nearly the same name.***

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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