John vs. Cancer #3: Inconceivable!

***Previously on John vs. Cancer: our hero has finally been forced to accept that he doesn’t just have a rash on his leg and a bit of a bug, he’s got a very rare final-stage lymphoma and there’s a one in three chance it’s untreatable. Big bit of news for a Tuesday morning, that. But on with the story.***
 
With the sort of prosaic beige inevitability that could never have happened if this lymphoma had been set somewhere dramatic like Vienna or Mars, I got the call whilst I was having a plate of pie and mash. And in a first for the opening paragraphs of these blogs, I didn’t tell anyone to fuck off. But I did think it very loudly.

“John, we’ve – oh, sorry, you’re eating – we’ve found you a slot! They can fit you in over at the fertility clinic. But you’ve got to come now.”

Honestly, you’d think the NHS would provide special training in avoiding sentences like that last one. But, monumentally awkward though it was, is and will remain for however long I have left, I knew this moment was coming.

Upon receiving my diagnosis two days before, I’d been told that the huge doses of chemo I was scheduled to receive would more than likely knock out my reproductive potential for good. Steps – specifically, the steps down to the creepy NHS freezer full of sperm samples that I presume is lurking somewhere in the Barts basement – would have to be taken if I didn’t want the broad, leafy avenue of my potential genetic bequests to become a dark and unloved cul-de-sac. Hell of a sentence, that, but hopefully you’ll forgive me – after all, it’s quite likely by now that a really elaborate subclause is the closest I can come to creating life.

As it happens, this was about the best news I’d had since coming into hospital. I’ve always been pretty set on the fact that I don’t want children, because a) there are far too many of them already, b) I’ve got no wish to pass on genes apparently coded for cyclical weight gain, intermittent mental instability and weird big toes and c) Ella and I both have sufficiently uncontrollable hair that any child of ours would more than likely look a bit mid-80s Barbara Dickson meets Stig of the Dump. Besides, what if it was stupid, or liked football or something? There are stupid people AND football fans in my extended family. Can’t take any chances.

…and yet. However anti-breeding I feel as I type this, it seems futile not to acknowledge that something as lifechanging as a cancer diagnosis has the potential to alter your opinions not just now but down the line. I cannot imagine ever wanting kids – not least because if I survive this palaver I intend to live, devoted entirely to my own pleasure, in a castle made of roughly-hewn Turkish delight – but if Future John develops incorrect opinions about fatherhood then he must be left to deal with them as best he can.

The other great thing about getting ahead of yourself re: production, of course, is that you can basically palm off (ahaha) the decisions onto someone else. If I turn out to be dead by Christmas but I’ve taken the appropriate steps to safeguard my legacy, Ella can always conceive and raise my not-even-technically-fatherless child; possibly in the manner popularised by the horrendous film Clone (formerly Womb), in which Eva Green plays an absolute monster who clones her dying boyfriend (Matt Smith, for some reason) and raises him as her son. (I spent six solid hours editing a review of Clone (formerly Womb) in 2012, and I feel like it owes me something. If I want to superimpose its dreadful plot onto the lives of those I leave behind, I damn well will.)

And with that arguably misplaced foray into film journalism – I include these things to remind you that I was once a normal person with a normal job, not just a weird cancer mascot – you’re more or less up to date on my thought processes since being given the ‘use it or lose it’ ultimatum. It was probably worth gritting my teeth and getting the horrible business over with. I was more or less at peace with this decision. But I didn’t expect to be interrupted during my fucking pie.

Nor, alas, was I alone when I got the call. (In the first draft of this blog, which has been really fucking difficult to write, I was alone, because that was easier. But it wasn’t true, and if I start fudging the truth here to give myself a slightly more comfortable time of it then I may as well just crack on and expire.) Ella was there. My mum was there. Obviously, both their presences complicated matters to an extent – I didn’t want to have to get into any gory details in front of Mum, and I felt like Ella and I had had no time at all to discuss the decision I’d been told to make. Forty-eight hours on paper might seem like long enough to really grit your teeth and work out whether you’re ever likely to want to breed with someone, but it was the same forty-eight hours since I first heard the words ‘hepatosplenic’ and ‘one third chance of having no response’ and various other ones which had been much on my mind. And now, when we’d barely skirted around the topic, it turned out there was to be no more discussion at all.

At the risk of wandering into undue seriousness for a bit, this was the worst part of the whole affair. I am so hopelessly devoted to the NHS that I’m reluctant to criticise anything that’s happened this last month, but I do wonder whether the whole fertility thing would have been better handled if, say, Ella and I were married, or older than 25 and 22, or otherwise established in a way that ticked more or better boxes on a form somewhere. Having these conversations, given everything else that’s inevitably going on alongside them, must be fucking odd at any age. But feeling that the conversations themselves are not a priority to anyone but you two is horrible. Of course I understand why everything happened in a hurry; but now, writing a couple of weeks later and looking back at just under a month of varied and eventful treatment, I wish this didn’t stand out as the one bit that felt, then and now, like a genuine trauma.

Of course, the more desperately you need a situation to be handled with absolute solemnity and control. the quicker absurd moments slip in. I asked Ella, Mum and the nurse to leave, changed my shirt and took some deep breaths, then came out of my room just in time to hear Mum asking how long I was likely to be. Jesus. “Well, how long is a piece of string?” replied the nurse – perhaps not an unreasonable response, but one that nevertheless prompted a brief prayer that Ward 5D would just fucking implode before the afternoon got any more awkward. It got more awkward literally within ten seconds, when Mum’s kind, thoughtful followup question: “Shall I pop back in and get him something to read, then?”, which was OBVIOUSLY a reference to the potential waiting time, was met with perhaps the worst six words I have ever, ever heard.

“Oh, it’s alright – they provide materials.”

JESUS. Up until that point I’d been quite nervous about leaving the ward for the first time in five days, let alone walking somewhere else. It turns out that the best cure for being mildly institutionalised is experiencing such a severe full-body cringe that you just want to be outside where you might get struck by lightning or, crushed by a falling tree, or killed in literally any way that’s available. I have never felt so self-conscious or so unhappy or so useless. It was clearly time to become, or at least try to stay, a potential dad.

The fertility clinic at Barts is on the second floor of a drab brown building designed to remind you that whilst Nature is irrefutably gorgeous in its every shimmering facet, Man alone is the progenitor of ugliness and disharmony within the world. Oscar Wilde is supposed to have said that American society was so violent because of the ghastliness of its wallpaper, which served as a constant reminder of just how fucking awful it is to be a human when you could be a flower or a vole or something that doesn’t share chromosomes with Donald Trump. That’s the sort of building we’re talking about. It is ugly in a way that makes you want to lie down, preferably facing away from it, and die.

Of course, it’s silly to judge anything by appearances – I, for example, now have sad little wasted arms all covered with cannula bruises, although I’ve been typing like a menace ever since I came in here and should by rights look like a Machamp – so I did my best to enter the fertility clinic with an open mind. I truly did. But good God, it closed up quickly.

Probably the first thing to note if you’re planning to run a fertility clinic at some point in the future is that nobody there is feeling chirpy, and that’s okay. If you’re at a fertility clinic, it’s either because you want kids and can’t have them on your own, you want them but don’t currently have anyone to have them with, or you’re about to stop being able to have them. None of these are inherently cheery scenarios, and nobody requires them to be. The man asking in broken English about his wife’s endometriosis? Resigned to having a crap morning, I suspect. Ditto the very well-dressed couple who went straight to the corner seats and didn’t bump into the bin like everyone else, suggesting that it wasn’t anywhere near their first time stepping around it. And ditto me.

What I’m getting at here, in a way, is that nobody in that waiting room wanted to be watching reruns of the defunct ABC sitcom Melissa & Joey. But that is what was on, and that is what we did. Melissa Joan Hart had a pink plaster cast on her leg and a sort of honking tone to her voice that I don’t remember from Sabrina the Teenage Witch, and Joey Lawrence did whatever the fuck it is he’s done for the last twenty years – blink and wonder what happened to his childhood, presumably – and we all just sat there watching. It was absolutely the most depressing shared experience of my life, and I have been to both the funeral of a suicide and to Belgium.

When I got there it was just me and the endometriosis bloke, but gradually the room filled up – all couples, absolutely all couples but me – with various people in leisure slacks and horrible watches and Haircuts. “Thank god you’re having the chance to pass on your genes through the wonders of modern medical science, mate,” I thought absolutely zero times. I became more of a misanthrope during half an hour in that holding pen than I’d managed in the previous 25 years, not to mention the past week (which had actually been fairly quiet on the loathing-everyone front, since everyone’s nice to you when you’re suddenly maybe dying).

I was finally ushered into a tiny room by a cheery embryologist in scrubs. She indicated the range of relaxation options available (hard chair, pleather chair, toilet), demonstrated the weird Borrower anteroom in the wall where I was to leave my sample (open door 1, place jar on ledge, open door 2, close door 1, retreat), and whisked me through a stack of forms covering everything from what happened if I ended up a vegetable but Ella fancied being a single mum to whether I could spare anything for training purposes. As she left, she turned and handed me the box file on which she’d leant her clipboard with a studied insouciance that made me want to tear out my bloated spleen and choke myself with it. “In case,” she said, “you need any inspiration…”

The box file contained a single promotional copy of Razzle, a magazine which I didn’t actually believe existed until that moment. My veneration of the NHS is second to none, but let it never be said that it is a profligate organisation. I closed the file extremely carefully and put it to one side, and – as if by magic – the narrative resumed some minutes later.

(If you are a dying billionaire with a vague concern for the mental wellbeing of ill young men, by the way, maybe consider throwing a few million at the NHS with the specific intention of refurbishing all those terrible little donation rooms. I dare say there is a time and a place for feeling sordid and degraded and so panicky and sick that you have to sit down because your knees are seizing up – for me it’s usually any time I have to visit Primark, or maybe Portsmouth – but this occasion is Not It and the rooms Do Not Help. I’m particularly thinking of the pleather chair.)

Whilst working through another stack of forms with the embryologist, she dropped the second horrendous, earth-shattering sentence of the afternoon. “Of course, we had to hurry you in today since you’re starting chemo in the morning.” As far as I knew, my chemotherapy was due to begin on Monday, on the other side of a long weekend which I’d carefully packed with visitors in order to make the most of my relatively intact immune system. “No, we got the note earlier. Just glad we’ve been able to fit you in.” I fled the building, found Ella having a cry on a Macmillan volunteer, and demanded she take me to the pub.

In the fortnight since these events elapsed, I’ve made it out of the hospital two or three times for a gentle stroll and a breath of fresh air – in fact, last night I got all the way through an actual restaurant meal without collapsing or crying for a nurse – but at the time, I hadn’t so much as seen an open window in better than a week. It was hot, and I was heavily cannulated for antibiotics, and I’d just had two traumatic experiences on the trot (three if you count Melissa & Joey). I should not have gone to the pub. I should certainly not have gone to the pub, slammed both betubed arms down on the counter and croaked “Whisky” at the barman. This is not the way of pubs – it is, at a push, the way of saloons in bad Westerns.

Nevertheless, I got my whisky (Laphroaig, because there’s a time for subtlety and this wasn’t it) and my pint (couldn’t drink the pint) and my packet of crisps (crisps are weird, I’ve gone off crisps), and I sat and shook and muttered for about ten minutes and then we went back to the ward. I don’t think I have ever felt so thoroughly frightened – everything was too loud and too sharp and too saturated. It was as if the entire afternoon had been draped in one of the Instagram filters towards the end of the list, the horrible yellow ones exclusively reserved for twats at festivals. After nine days of steroids and bed rest, I’d more or less forgotten how very ill I’d been the week before – now, not only did every part of me feel like it wanted to fall off and die, but I was about to start chemo without a sniff of the emotional loin-girding I’d painstakingly planned.

Happily, not least for the spiralling word count of this instalment, I can sum up the emergency chemo rescheduling in very few words: it was a fib. The Barts fertility clinic is one of those places that’s always busy despite being incredibly depressing and awful (further shades of Primark and Portsmouth) and in order to make sure getting a slot didn’t unduly delay my chemo start date the latter had been gently massaged to appear more urgent than was the case. Unfortunately, nobody told me this for some hours – nor did they tell the nurses who came to work out my BMI and also thought I was starting in the morning. I spent a few extremely disoriented hours thinking cytotoxic thoughts, then someone came and told me and, broadly speaking, the sunshine re-entered my evening.

Dinner that night was braised sausages, which aren’t at all bad even if they do look like they’ve escaped from the pathology museum in the North Wing, and more mash (NHS Premium Creamed Potato is treated much like saline, which is to say ‘something you should probably be having at all times, ideally straight into a vein, just in case’.) It was one of the more satisfying meals of my life, after one of the most ghastly afternoons I could remember. I’m not saying that all life-altering treatment plans should be delivered via the medium of the inverse bait and switch, but – particularly when you’ve spent the afternoon wanking into a cup – the good news doesn’t half give you an appetite.

***NEXT TIME ON JOHN VS CANCER: Chemo Round One, a succession of hats and accidentally becoming the face of Cancer Twitter***

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 #2: The Road to El Diagnosis

***Previously on John vs. Cancer: our unwittingly malignant hero has spent two months ignoring his symptoms, his girlfriend and his common sense on the basis that being alive is enough to make anyone feel like dying. He’s now ensconced in ward 11F (F for ‘fucking hospital’) of the London, having a very dispiriting chat with his doctor. Curtain up.***
 
“John, I’m sorry to tell you that you have a cancer of the blood.”

“Fuck off.”

Not all of these blogs will start with me telling someone to fuck off, although frankly I think I could be forgiven if they did. And anyway, Abbas the haemotology registrar really didn’t deserve this one (although the tone was definitely more ‘gosh, that’s unexpected’ than ‘actually fuck off, Abbas’). There just aren’t a lot of ways to respond to a sentence like the above, particularly when you’ve spent a couple of months hearing something similar every day and dismissing it utterly.

Even that day, which had started with a bevy of doctors pulling the curtain round my bed and explaining that they thought I had a roughly 50-50 chance of being in some way cancery, had been punctuated by attempts to convince Ella (by now afraid to look at anyone in case she accidentally diagnosed them with AIDS or MS or something) that the sheer fact of her insistence that I had was dying made her even less likely to be right. I sort of vaguely thought it was like the Monty Hall problem, but with looming extinction instead of farm animals – first pick Door 1, then switch to Door 2 after you’ve seen the goat* behind Door 3, and you’re more likely to end up with the brand! new! car!**

*cancer
**anything! but! cancer!

Does that make sense? If not, consider it my fault rather than yours. I’ve never really given the Monty Hall problem the time it deserved, and I now have a sneaking suspicion that it’s one of those things you either get to grips with before you’ve started flooding your system with cytotoxins, or leave for other people. But back to the diagnosis.

Having led with the incredibly strong ‘you’ve got cancer’ line, Abbas admitted that that, basically, was all he knew – the horrendous bone marrow biopsy he’d performed that morning had revealed the presence of cancerous cells, but nobody knew whether I was dying of leukaemia or lymphoma, let alone from which specific flavour of either disease. You might be inclined to think that tracking down a precise diagnosis at such an early stage is a bit deckchairs-on-the-Titanic, but blood cancer is a very broad church – there are leukaemias with a 98% remission rate, and lymphomas where the diagnosis is accompanied with a swatch of potential coffin liner fabrics. Abbas explained that to find out more (he says, like someone on fucking Who Do You Think You Are), I was going to have to go on a journey.

Fortunately, the journey was a literal one, because as and when I get sappy enough start talking about my ‘cancer journey’ you must all protest outside Barts until my chemo is withdrawn. I was to be dispatched from the London to its sister hospital, St Bartholemew’s, as soon as a bed could be found for me in the haemato-oncology ward. Once there, I’d have a couple of weeks to wait before my cancer was diagnosed, and then we might finally know what to do with the bastard.

I had one more day to kill at the London, so I spent it sending morose tweets and unsuccessfully trying to get myself off the ‘please give this poor fucker grey soup with every meal, he doesn’t look bilious enough’ list that was evidently hung up somewhere in the nurses’ station. I had a bag of antibiotics, then two bags of blood, then loads more antibiotics because the blood gave me a fever. I ate a Bounty. With an abrupt sense of panic, I realised that there was an appreciable chance I might not outlive Sir Bruce Forsyth – it’s never been one of my main life goals, but as these things go I’d always rather assumed that one was mine to lose. I tweeted my realisation, and eight people promptly offered to kill him.

Around ten o’clock on Thursday, the stars aligned and I was conveyed by creaking hospital transport to my new home – the second bed in a gleaming two-bunk Hilton on Barts’ newly refurbished fifth floor. My first ever cancer roommate, Sam, was (and presumably remains) a friendly electrician with a lump in his armpit and an excellent line in isn’t-this-a-pain-still-there’s-no-helping-it pragmatism, which was very reassuring – having signally failed to burst into tears or even feel especially woeful, I was starting to worry that I was emotionally stunted. Turns out, of course, that I’m just extremely English. (Or that this is the Sociopath Room.)

After one final night of intermittent vomiting, I woke to my first encounter with the oncology team. Simon, the Platonic form of a clean-cut and reassuring consultant, expressed his suspicion that I was harbouring a lymphoma rather than a leukaemia and boldly cut my expected diagnosis time from two weeks to four days – all being well, I’d know by Tuesday what was wrong with me. Until then, various catch-all therapies could be applied, chief among them a huge dose of steroids to start steamrollering my increasingly arsey white cells.

“The steroids,” said Simon, “could cause some mood swings. Could be good, could be bad. Might not happen. And… we’ll need to keep an eye on your blood sugar.”

Oh Jesus. Oh fucking no. Not blood sugar.

Here’s the thing: I’m not a slender chap. I have been, on occasion, but generally it takes about eight months of obsessive dieting and lasts for anything up to a week, until I see a samosa with a particularly well-coloured shell and revert neatly from miserable worthy abstinence to cheerfully mindless gluttony. I cook all the time. I eat all the time. And I live with Ella, whose first cookery book will be out next year, and who is the next Nigella from top to bottom; brunette curls, zero regard for calories and (now) a journalist partner who’s full of cancer. We are not at home to spiralisers. And I am not at home to thinking about my blood sugar.

When you’ve always been tubby – and particularly if you’ve ever tried being tubby at a boys’ grammar school, full of horrible sharp-elbowed little ectomorphs who put all their calories into learning log tables so they never have any left for puppy fat – you hear a lot about diabetes. Specifically, you hear a lot about having to have your legs cut off. And if you’re anything like me, you never really forget it. I cannot remember any time at which I have not being frightened of developing Type 2 diabetes, the preventable disease of awful fat fucks.

It doesn’t do to lose one’s shit over a passing mention of blood sugar just when you’ve impressed everyone by being so stoic about your looming cancer diagnosis, of course, so I nodded and smiled and promised to go easy on the chocolate care packages. The doctors left, and the drugs were delivered. And I felt fucking marvellous. I’d finally stopped throwing up after a solid fortnight, I had a steroid-enhanced appetite and a steroid-boosted mood, and my mum had dropped off a metric fuckton of biscuits.

I ate like a maniac all day, and when I went to bed my blood sugar level was nearly six times the recommended upper limit. The night nurses put me straight on an insulin driver and started pricking my fingers every hour to check just how much of me had turned into syrup, and I spent the next two days touching every inch of my legs so I’d remember them when they were gone.

The nurses reassured me that lots of people suffer from temporary steroid-induced diabetes, and that it goes away when the steroids do, but there was one piece missing from the puzzle; nobody had thought to check my blood sugar before the treatment started, so for all we knew I’d been a raving diabetic long before I was admitted. And since the absolute best scan for lymphoma uses an injection of radioactive sugar as a trace, this wasn’t something that could be filed under ‘deal with as and when John fails to die of cancer’. Being diabetic, even temporarily, meant not getting the full story.

After a long, lonely weekend of refused puddings and baleful glances at anyone who looked like they weren’t about to go into immediate hyperglycaemic shock, I was thrilled to discover that I still couldn’t have the fucking test because, despite nil-by-mouthing and hourly blood tests and all the rest of it, the slavedrivers in Nuclear Medicine wanted me to have somehow fended off diabetes using willpower alone for the six hours before I went in their bloody machine. We compromised on a CT scan – nearly the same analytical power, and no special diets required – and I returned to my room to wave goodbye to Sam, eat a solitary lamb biryani and await my sentence.

The following morning – Tuesday – marked one week since I’d called the GP, got my emergency appointment and departed from the ordinary land of the long-term living. I breakfasted on everything I could possibly find, on the basis that I might not have much of an appetite once I found out how fast I was dying and that every calorie consumed now might carry me through another few seconds in the last desperate weeks to come. (I may also have still been riding the steroid appetite thing a bit. I certainly ate a cold sausage that I didn’t really need.) Simon turned up bright and early with his coterie of registrars, medical students, nurse practitioners and other people from the Playmobil catalogue – and, like Maat with her scale and her cane and her big bloody feather, he held the knowledge of my fate.

When the news came, it actually felt like a bit of an anticlimax. As we’d thought, the cancer was a lymphoma. As we’d also thought, it wasn’t one that turns up on every street corner. In fact, I’ve got quite the hipster diagnosis – my personal flavour of death is hepatosplenic T-cell lymphoma, a cancer that appears only in the fourth and final stage and has been diagnosed some two hundred times since its identification in 1990. I was born in 1989, so my cancer isn’t just infinitely cooler and more alternative than I’ve ever managed to be – it’s also fucking younger.

If you do feel like Googling my cancer, by the way – I know you might, it’s what people do – I beg you not to tell me anything about it. I had a peek immediately after being told the name, and the first words that jumped out at me from my phone were ‘generally incurable’. That’s not what the doctors have told me, so I’m sticking to their advice and leaving Wikipedia to the GCSE biology students. I know three salient facts about hepatosplenic T-cell lymphoma, and they seem to be the only ones that matter. Here we go:

1) Unlike most lymphomas, which manifest as cancers of the lymphatic system, hepatosplenic T-cell lymphoma hangs out mainly in the liver and spleen (hence the name). The first clue my GP had to my condition was that both these organs were palpably swollen with what turned out to be masses of cancerous blood – so much, in fact, that they’d actually made me anaemic. If you imagine a goose being fattened for foie gras but replace ‘delicious mashed grain’ with ‘mutated poisonous blood cells’, you’ve pretty much got the measure of my liver these days. Tasty.
2) Unlike most lymphomas, which like to get out and meet people (someone is diagnosed with blood cancer every twenty minutes in the UK), hepatosplenic T-cell lymphoma is so rare that we don’t really know any of its habits. There haven’t even been enough cases to make a proper graph of what’s happened to the poor sods who developed it, which means I’m in the relatively unusual situation of having a cancer with no prognosis. We just don’t know what the fuck it’s going to get up to.
3) Like most lymphomas, hepatosplenic T-cell lymphoma has a varied response to treatment. Stem cell transplants have been successful in some of the patients who’ve survived long enough to attempt one. Although the current go-to chemo regime for many blood cancers doesn’t really work, others have. And – here’s the big fact, the only statistic I’ve got – in around two thirds of people who acquire this cancer, treatment is possible.

Might repeat that sentence, since it’s probably the most personally important one I’ve ever written. In around two thirds of people who acquire this cancer, treatment is possible.

What this means, in essence, is that I’ve got a roughly two-thirds chance of having any response at all to the chemo currently dripping into my right arm. That’s not the end of the world – it’s a much better chance than you’d have with something truly evil like pancreatic cancer, which killed my dad stone dead within seven weeks of his diagnosis. It’s better than a fifty per cent chance, which is the best I’d give Bruce Forsyth of reaching the end of the month now my boys are on his case. But it’s not great, is it? It’s not great.

I’ll have finished this course of chemo by Monday, and then I’m going to be chilling in hospital for a couple of weeks while my immune system slowly crawls out of the toilet, and by the time I’m well enough to go home we’ll know if it’s worth me coming back. There’s something quite freeing about this, in a way – there’s certainly nothing to be done, so it’s hard to get too emotional. Either I’ll respond to the chemo, in however small a way, and it’ll be worth getting my head down and trying to survive… or I won’t, and all I’ll have to worry about is emptying my wine rack, absolutely not talking to anyone that I’ve ever pretended to like, and squeezing off some really dark tweets. There’s something to be said for an autumn spent like that. But given the choice, it’s not the one I have planned.

If you’ve been about on Twitter in the last day, you’ll have noticed that when we hit the last fundraising milestone for Anthony Nolan (£25,000 in two days, no big deal) I put the total up to £33,000. I fucking loathe odd numbers, but it seemed like a good one to tackle. After all, if I’ve got a 33% chance of having wasted all this chemo and taken up an NHS bed for no good reason, then that’s a number I want to vanquish as symbolically and over-the-toppedly as possible. Fuck you, 33%. I don’t plan on fucking dying in here.

***NEXT TIME ON JOHN VS CANCER: Inconceivable; or, Fun at the Fertility Clinic. Although I’d almost rather die than tell you what happened.***
 
 
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 #1: Not Having Cancer

***In which our hero doesn’t, and then maybe does, and then definitely does have cancer. Just so we’re clear.***
 
“John, I think you’ve got blood cancer.”

“Fuck off.”

“I just really think you should go to the GP. There’s that rash on your leg, and you keep having nosebleeds, and you’re always tired and-”

“Fuck off. You’re a hypochondriac. What’s worse, you’re being a hypochondriac at me. This is basically Munchausen’s Syndrome by proxy. Fuck off.”

“But-”

“Fuck off.”

The awkward thing about spending two months telling your girlfriend that she’s an idiot for Google-diagnosing you with leukaemia, of course, is when she turns out to be very nearly correct. Ought I to regret, to recant the conversation above and the dozens like it, or is it just inevitable that one nervy partner in a million will accurately call a cancer diagnosis eight weeks before a doctor appears on the scene? I’m more inclined to chalk it up to extremely long odds than insist she does an AMA on how she can smell aberrant cell division, but perhaps that’s just bias. After all, coming to terms with long odds has been very much the order of the day of late.

When I finally went to see my GP, thirteen days ago, I’d been quietly dying of cancer for about three or four months. I hadn’t noticed, because the progressive destruction of my bone marrow began more or less as I started a new job in magazine publishing, which often feels like that anyway. After two years of working from home, the second as an almost entirely idle freelancer, I was suddenly spending 45 solid hours a week in the office and catching a rush hour Tube for the first time since 2011, plus getting up at 5 whenever I could think of something fun to write. Of course I was exhausted. Of course I was getting nosebleeds, and headaches, and weird shadows in the corner of my left eye. Having a job is dreadful. (It’s not, of course. Having a job is just the ticket, except when you’re dying, when it becomes dreadful by virtue of being ‘a thing to do that isn’t lie in bed and whimper’.)

Sometime around the start of the nosebleeds, my long-suffering girlfriend Ella started mentioning leukaemia. The first time it came up, I eventually discovered that her period was a day late and her concern was not so much that I’d die of cancer but that she’d have to raise a fatherless child alone once I did so, which maybe gives you some context re: her capacity to worry about utter bollocks. It certainly wasn’t worrying me. I’ve always been prone to bruises, always at risk of nosebleeds when things are stressful – not sickly by any means, but a bit full of blood. My dad had haemochromatosis, one of the very few diseases for which bloodletting remains the most effective treatment (aren’t you thrilled that there are still some left?), and I’ve got a bundle of the same weird genetic markers – not enough for a diagnosis, but more than enough to keep my cheeks and handkerchiefs regularly topped up with vermilion.

This was the point at which I arguably started to ignore the evidence. I developed weird rashes on both my shins, purply masses that looked like rows and rows of ruptured blood vessels. The Internet called them petechiae and said they were a possible symptom of blood disorders. I decided they were because I had to wear trousers all the time (fucking job again) and there wasn’t any proper aircon in the office. Then I started getting such bad night sweats I had to sleep on a towel and change it at 3am before it could get the mattress wet. I dug out the fan I bought last summer and clocked it up to my usual boom and bust weight routine getting out of sync – normally I try to save being fat for winter, but this year it didn’t work out.

Then Ella and I went on holiday with her entire extended family, and I spent almost every day of it throwing up – sometimes so badly that I’d spontaneously develop more petechiae on my face during the twenty seconds or so I was actually retching. I grimaced at the offensively healthy-looking mountains, swore off booze and crawled into bed for the week, spending more time in my room than I really wanted to because I didn’t want anyone to notice how hard it was for me to manage the stairs. Ella’s grandparents, both pushing seventy, made it to South Base Camp a couple of years ago – they do not fuck about – and the last thing I wanted was to appear as pathetic as I felt.

By the end of the week I’d lost half a stone, passed on dozens of meals that would normally have had me weak at the knees and substantially bolstered my reputation as the lazy boyfriend who didn’t like hiking or joining in. But, thank Christ, it seemed I was going to leave the bug in Scotland, along with the weird yellowish water and the complete lack of WiFi. I got home intact, spent one day at work trying to make sense of an article about tax avoidance, and promptly started throwing up again.

I hadn’t seen my GP for three and a half years – in fact, I hadn’t spoken to a doctor since I discharged myself from a mental hospital in early 2012 (see many, many self-indulgent columns passim) – and I wasn’t keen to break the streak, but I really did need to get this article done and vomiting wasn’t going to do anything for my prose. So I choked down a Berocca, registered with the surgery up the road and secured a ‘new patient checkup’ for the following Wednesday evening, with a vague recommendation to pop to the out-of-hours clinic over the weekend if I still felt rough. I did, so I did, but they aren’t allowed to prescribe anything so I went home again.

By Monday, I was so desperate to work that I’d have cut my legs off and used them as paddles if only I had a canoe and a creek and all the other things this analogy is somehow lacking. Alas, a brand new office meant that my commute had shifted from the air-conned and reasonably salubrious Hammersmith and City line to the steaming green shit serpent that is the District, and after one rush hour trip spent standing in the last carriage I was barely conscious. My boss sent me home comfortably within five minutes of my arrival at work, and I crawled into bed with just enough wherewithal to call my new GP and beg for a telephone consultation the next day.

On Tuesday morning, the doc duly rang and, to my surprise, asked me to come in as soon as I could manage. I expected to be written up for some anti-emetics and sent home, perhaps with a salutary warning about being fat and stressed when it’s hot. I did not expect my GP to palpate my liver, write me a note to bypass the queue at A&E and call me a cab there herself. Neither did I expect to walk into A&E and be in a bed within fifteen minutes. I certainly didn’t expect to be seen by three doctors and then admitted to an urgent care ward. I hadn’t even taken a fucking book with me, and I generally take a book into the shower.

As I settled into my new bed and contemplated the plate of lamb bolognese, pasta shells and baked beans which my immediate predecessor had inexplicably chosen to order before (I hope) dying, a twitchy young registrar popped in and introduced himself. He was from the haemotology team, and he’d been scrambled because there was something amiss with my blood. They’d know more tomorrow.

“We’ll know more tomorrow,” as it turns out, is a deeply loaded phrase when used by a haemotologist, because what it actually means is “we’ll know more when I biopsy your bone marrow with this colossal syringe.” The technique is actually called a ‘punch biopsy’, and I just looked up the tool they used to do it, and now I wish I hadn’t. I had to be sedated eventually, but I’m told I carried on screaming under my breath. The registrar went away with his little tray of aspirated blood and chunks of bone marrow, and I decided I probably wouldn’t ever go to St John again, and that was that.

After a very long, very slow day spent staring blankly at Right Ho, Jeeves and slowly drawing up an armful of antibiotics, I decided to have a horrendous vomiting fit just in time for the haemotologist to come back and see me. It probably wasn’t the worst thing I could have done, because once a relative stranger has found you covered in blood, IV fluids and cottage pie on the floor of a hospital toilet there’s nowhere for the encounter to go but up. Even if, with the sort of nauseating neatness that you’d never write into a proper story, where it was going was here:

“John, I’m sorry to tell you that you have a cancer of the blood.”

“Fuck off.”
 
***NEXT TIME ON JOHN VS CANCER: The Move to Barts, Adventures in Blood Sugar and a Looming Diagnosis. Assuming, of course, that I stay alive long enough to write another column. You don’t get this sort of suspense on Comment is Free***
 
 
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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