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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22 thoughts on “John vs. Cancer #2: The Road to El Diagnosis

  1. Jo Scott says:

    Dear John (somehow that always sounds wrong?)

    My son was diagnosed with Stage III testicular cancer aged 15. Everyone says ‘that’s a brilliant one to get, totally curable’. ‘Yeah’ said the oncologist, ‘mostly’. Turns out he had some annoying rare and virulent version too.

    So Ed does try to look on the bright side of life, and being a traditional build, decided that actually having cancer might be ok – with chemo as a sort of vomity quick diet he might just be rocking that skinny jeans look that has always evaded him. Hmmm. Not so much. Steroids pumped him up at the same time as he lost his hair. ‘I look like a potato’ he said. I couldn’t argue. And my god a teenage boy with steroid hunger is a sight to behold. His appetite was Olympian level.

    I left the visit to the sperm donation clinic to his father. It’s a boy thing. Poor man was so traumatised that the crashed into a bollard in the car park on the way out, which feels ironic really. Ed was also traumatised but more so. Locked in a smelly room with some well leaved literature. It’s not love’s young dream when you’re 15. He couldn’t perform. In the end we conspired with the doctor that he could knock one out at home, slip it down his trousers to keep it warm and then emerge with a big smile after 5 minutes in the dreaded room. Strictly against the rules as they are supposed to ensure it really belongs to him. I’m looking forward to your take on this experience.

    Ed is pretty well now. The steroids weight fell off and his hair came back.

    The doctors do the gloomy worst case scenario stuff very well to begin with – lots of managing expectations I think. But things did get easier and the outlook less grim once he started responding to treatment.

    I wish you all the best. You really do have to find the humour in this stuff.

    Jo x

    Liked by 2 people

  2. […] John vs. Cancer #2: The Road to El Diagnosis. […]

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  3. Me again. Please ignore the business name, I’m not grooming you for anything. Especially nothing marvellous. Sorry about that. Just thought I would tell you that tonight one of my friends told me she was pregnant. I made tight fists and grinned like an idiot whilst making a NNNGGGHHFFFKL noise and then, the very first words out of my mouth were ‘would you consider donating your baby’s stem cells to Anthony Nolan because…’ and then told her your story. She said YES immediately, and then after some chat, woman do that, we have decided to try to get more woman to do the same. Give a life and save a life in one day. BOOM!

    Liked by 1 person

  4. Sophie King says:

    Dear John, you are a very brave and funny man. I send you all my best wishes and hope with all my heart that you get better – and eventually make a shed-load of money out of what is a really shitty illness. Fingers crossed.

    Like

  5. melissa says:

    I felt the urge to leave a reply because I feel that having a life compromising condition can make you feel isolated yet popular in the same moment! My mother was diagnosed with lymphoma after being initially told she had lung cancer. She became paralysed from the waist down as the tumour they thought was in her lung was actually strangling her spinal chord, stopping the messages getting below the waist. She’s had major spinal surgery and is currently having chemo. On Monday we have the mid way results to see if the chemicals are killing the cancer and therefore giving her more life…. Anyway I didn’t write to you to tell you about my sob story I just wanted you to know that I admire you for writing your blog and for being so real about the situation. Keep fighting John and big hugs for Ella.
    Melissa x

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  6. patcadigan says:

    Greetings from the recurrent uterine cancer region of Cancerland, where there are also no cures and all treatments are categorised as palliative, even when they’re effective. I’ve been defying this malignancy since last Christmas (“What did Santa bring you?” “Fuck off.”)

    I love your blog already.

    One note about chemo: I don’t know what they’ll be giving you, of course, but some of these drugs have alcohol in them. Mine did; every three weeks, I’d spend most of a day getting smashed (but then I’ve always been a cheap drunk).

    Write on, fellow denizen of Cancerland. Punch it in the face whenever you can and when you can’t, tell it to fuck off.

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  7. Dear John,

    Came across your blog and diagnosis. Wondered if you have looked at the Lymphoma Association. We provide information, suppport and education for people affected by lymphoma. We do this through providing specific information about all aspects of lymphoma from disease specific questions to more general treatment and practical advice for people affected.

    Like

  8. DP says:

    Dear John
    I was fascinated by the article about you in the Times today. Like I was meant to read it. You know when you get those annoying people who say “I can go one better” well, in a way I can. You see, 4 months ago I was diagnosed with a cancer so rare, that since first discovered in 1966, there have only been 39 well documented cases in the English speaking world! so noone can tell me anything about it (malignant pilar tumour of scalp) or what will happen. No support groups anywhere, nothing.

    Added to that, I have the most obnoxious consultant in the universe. Maybe it’s because he doesn’t know what to say to me, but my only encounter (2 months after the operation to remove the little demon – cancer, not him!) was,,, “I’m the consultant here, and I understand you wanted to see me – WHY?” and his expresion was “I hate and despise you, and would be extremely happy if you would drop down dead at my feet right now”. Well, I certainly didn’t see that coming – the rest of his team are charm personified, but I didn’t cry, and persevered with my many questions. He was horrid throughout, except twice…. He said I had an excellent pair of t…. (I honestly thought he was going to say tits, as he was standing over my mouth, and I had a stupidly low cut dress) but he actually said tonsils. And he also said that if I had to have cancer at all, it was the best kind to have. Gee Whizz.

    However, no way was I going to ask if I was going to die, didn’t want him to be able to rub his hands gleefully saying oh yessss….. instead, I asked if the tumour would come back (according to google it usually does, well, 3 out of a sample of just 4!) unfortunately he chose to answer the elephant in the room instead, and said…. “well, normally with cancer we talk about a 5 year survival, but in your particular case, because it is so exceptionally rare, and because of the things that have happened to you (previously only half was removed and left to fester (and spread???) for 2 months) I really wouldn’t like to say you will make the 5 years, that’s why you will have lots of follow ups – AND NONE OF THEM WILL BE WITH ME” he spat out at me with another of his, now familiar, glaring expressions. My first follow up is in 2 weeks time, so maybe it will be with the car park attendant? I wait with baited breath.

    I do hope you have kind compassionate doctors looking after you! I believe it makes a big difference to recovery.

    Like you, I ignored family members saying that huge growth on your head looks like cancer. I’d had it since I was a teenager, and was used to it getting bigger then smaller and always being told by GPs that it was nothing, but I admit it suddenly grew rapidly before Christmas, but I wasn’t ill, in fact I felt more well than in any other time of my life! But had to go to GP as people were calling me Diane 2 heads!

    Like you, I refuse to see the future as anything but rosy. When I recount my story, people say that I look amazingly cheerful about the whole business. of course I have my moments, but sometimes I can even forget it. I feel exactly the same now as I did before the big C popped into my life. Here’s to long survival for both of us, and all other people diagnosed with this odd thing that suddenly appears without warning!

    Like

  9. DP says:

    hells, bells, now I have identified myself, maybe dear consultant will trace this post, he’ll probably sue me! can I use a different name please???

    Like

  10. Em Venner says:

    Hi John – I just wanted to say what an amazing blog, I think many people (myself included) are going to be following your story and are already waiting for the next instalment. Your frank account certainly highlights the need for more awareness of blood cancer symptoms but also how important support and information is.

    If you (or anyone else affected by lymphoma who may be reading this) would like to talk to someone or find more information then please do contact the Lymphoma Association.

    http://www.lymphomas.org.uk/how-we-can-support-you

    The confidential Freephone helpline is available to provide support, information and a listening ear Monday to Friday 9am – 5pm. Outside of these hours we have really busy forums where there are so many different conversations going on from diagnosis and different treatments right through to living with lymphoma.

    We’ve also got support groups around the country and a great Buddy scheme where we try and find someone with similar circumstances for people to talk to over the phone or by email.

    All our services are for everyone affected, whether you’ve got a diagnosis or know someone who has.

    Best wishes,

    Emma @Em_Ven @LymphomaAssoc

    Like

  11. g2-b51bd84f86f21f3412b06d74f3bd31fe says:

    Type II (i.e., the rarer, more malignant form) metastatic endometrial adenocarcinoma here. Definitely relate to the humour – when the surgical team was prepping me for surgery, I was asked my name, date of birth and what I was having done. Being a former theatre nurse, I said a radical hysterectomy with bilateral salpingo-oophorectomy and probably a few lymph nodes thrown in for good measure. The nurse frowned. “You don’t have to memorise your medical chart,” she scolded. Fine. When she asked me again once we’d reached the surgical suite to confirm my name, date of birth and what I was there for, I told her who I was, when I was born and that I was being spayed. She was even less amused but everyone else laughed.

    Cancer and chemo is different for everyone, but there will be things the doctors and nurses will forget to tell you (they get busy and most of them haven’t had the experience up close and personal themselves anyway) that those of us who’ve been through it can. Little things, like shaving or not shaving your head – even with chemo, there’s still some stubborn prickly hair that acts like velcro on a pillow if you shave it.

    Best of luck, mate. Hope to be reading your blog for quite some time to come.

    Like

  12. margomusing says:

    Good luck. And may I say I am loving your writing (although obviously not the reason for you writing it!)

    I am too old for the Antony Nolan register to want my spit or bones, but it might be worth mentioning that if you are (or sign up as) a blood donor, it is possible also to register as a bone marrow donor, and they will take people up to the age of 59 (AN only accept people under 30). I am on that register.
    http://www.nhsbt.nhs.uk/bonemarrow/

    Like

  13. Nat Davie says:

    Hi John,

    So glad that you are powering through this horrendous situation with grit and humour. Your blog is fantastic reading – I can definitely relate to ignoring the enormous flashing “hey you might have cancer” signs. I was diagnosed with chronic myeloid leukaemia a couple of years ago and spent the better part of a year trying not to throw up on the tube, staring longingly at heaving plates of food that I was inexplicably too full for and putting stomach cramps down to a one day virus. It was only when I got to the hospital room that I looked at myself and realised how skeletal I actually was. I don’t know about you, but it was a weird relief for me to finally have an answer for the bizarre changes in my body.

    The universe throws some shitty plot twists at us, it really does, and all we can do is stay afloat as best we can, hurling abuse at it until it leaves us alone for long enough that we can recover. Keep on keeping on, mate, you have a whole army of support behind you.

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  14. […] cancer ← Previous post Blog at WordPress.com. | The Chunk Theme. /* */ //initialize and attach hovercards to […]

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  15. Gaby Charing says:

    John, I’ve got rectal cancer. I decided at the beginning that you don’t fight cancer, you roll with it. Abandon what doesn’t matter and focus on what does. I admire your spirit and love the blog. Like everyone else, I am cheering you on. You’re a mensch. Very best wishes to you and those who love you. It’s easy to forget how tough it is on carers. Gaby.

    Like

  16. VA says:

    You made me laugh and you’ve made me think.

    Thank you

    Like

  17. ellisl88 says:

    John, your blog is amazing. I feel guilty getting so much enjoyment out of something so bloody awful for you but thanks for writing it. You’re an inspiration.

    Like

  18. John – This is wonderful. Love a bit of black humour and am writing a blog myself http://www.mumhasdementia.com which is fairly self explanatory. Similarly ghastly to your situation but admittedly less threat of imminent mortality. Have started following you on Twitter (like thousands of others) and love your chipper tweets. Good luck.

    Like

  19. […] 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 […]

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  20. Tracey Imotichey says:

    John,
    My finance was also diagnosed with hepatosplenic t cell lymphoma in August of 2015. I am so glad to have found your blog! I have so many questions, I don’t know where to begin. I will start by saying hello from the US.

    Like

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