Daily Archives: August 6, 2015

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!**

**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.***
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.

JustGiving - Sponsor me now!