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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19 thoughts on “John vs. Cancer #3: Inconceivable!

  1. So husky Melissa didn’t do it for you? Then again, the weirdness of Joey’s hair/scalp would put anyone off their stroke. So to speak.

    Liked by 1 person

  2. Hoorah! Have been waiting all morning for this installment and was just as much of a treat as I’d hoped. Sorry about you having to pleasure yourself in a grotty cubicle and all but just think how many millions of future literary geniuses have been preserved in that tiny pot. Lets face it – you owe it to humanity.

    Like

  3. Ruth says:

    Brilliant. Have just donated.

    Like

  4. iamamro says:

    Brilliant and very brave. Your writing is razor sharp.

    Liked by 1 person

  5. Jools says:

    I’ve found dignity goes out of the window once you have cancer. I have cervical cancer (diagnosed almost 3 years ago) and have lost count of the number of clinicians who have peered at and prodded my nether regions!
    I’m just hoping that when I die, I’ll be able to do it at home. The thought of being in hospital at that time terrifies me.

    Anyway, I want to wish you all the best. Sending good chemo vibes!

    Like

    • Betty B says:

      Dying at home would be a wonderful option, and one that at the moment is not open to many people. Can I plug the Dignity in Dying campaign which supports the Assisted Suicide Bill which is due to be heard in Parliament on September 11th? It’s not a way for carers to be relieved of their ‘burdens’ as some scaremongers are shouting, but the way for the terminally lll to be in control of their final outcome. Follow the campaign on Twitter, and contact your local MP asking them to get behind the bill. Thanks. My donation to Anthony Nolan is on it’s way.

      Like

  6. Dumb Ug says:

    Ace scribblings Mr Underwood. As for donations… which cup?

    Liked by 1 person

  7. Chloe says:

    John.
    I was diagnosed with Hodgkins in April 2013, two failed chemo regimens later they finally got me into remission for an allogenic SCT in November. Anthony Nolan found me a match and all seems to have gone well. I am about to return to work and am currently sat with a glass of wine watching a sunset. I cannot wait to read on your blog about the day you do the same. Persevere, do what you have to to get through and know that there are thousands of strangers wishing you well.
    Keep inspiring.

    Like

  8. Domi says:

    Hey! Belgium is not depressing!

    Like

  9. Jillian says:

    I was about your age and just had a new baby when I was diagnosed with a rare tumor. Cancer is never easy but seems especially cruel in your twenties, when parents may be there, but can no longer make decisions on your behalf, and friends just don’t understand genuine illness or mortality yet. My friends meant to be supportive, but “I understand because my mother also has cancer” doesn’t really help. I felt so alone, even with the best and most supportive husband in the world. I had no choice but to endure treatment and forge on ahead. The roulette wheel was spun and for me the results were good and I’m still here 20 years later almost to the day of my last treatment. I m thinking of you and sending good thoughts through the ether.

    Like

  10. Alicia says:

    John you are amazing. I am almost four years post breast cancer and wrote like the dickens the whole way through, because I Had to, um, get it off my chest. And guess what – it turned into a published book. Thank you for sharing your experience and in such a way that is off the charts brilliant. I am sorry for what you are going through but we are indeed in an amazing time in the history of medicine. I am praying for you, which I know might sound like hogwash but I’m going to do it anyway.

    Like

  11. Murtagh's Meadow says:

    A friend passed me a link to your post and I am glad they did – I can only echo what iamamro said – very brave and razor sharp. May your good humour and wit get you through this tough time. And don’t stop writing!

    Like

  12. lisa says:

    Keep going and stick it to cancer. Definitely keep going. Definitely.

    Like

  13. Robin Anderson says:

    I am Australian and was diagnosed with Burkitts Leukaemia in Aug 2011 and 4 years later am all clear thanks to the fantastic medical team at Peter Mac Hospital in Melbourne. Remember you have so far proved to be immortal and keep believing it. Love the blog.

    Like

  14. Ian Whitlock says:

    I hope things are going well for you. amazed to see £75k raised for AN so far. as with others myself and my family have enjoyed your various musings and look forward to many more about remission, progress or whatever.
    how strange life is – I narrowly missed going to Shoreham and so missed witnessing the air crash disaster. But it occurs to me that people may well have read your various pieces , puzzled about how fate deal our cards – and then been wiped out in seconds by an exploding Hawker Hunter coming out of a clear blue sky. Life is bizarre.
    Anyway, wishing you every morsel of good luck that might be available.
    Regards
    Ian

    Like

  15. Simon Bostic says:

    Incredibly funny yet very moving. Found via Anthony Nolan – a charity I have been associated with all my life – I shall leave it at that but if you fancy it, you can read about me on their website and all over the web too! Was the first to have a bone marrow transplant from an unrelated donor (which was partially successful for a while) and have lived with blood disease and all its accessories for all my life – they told me I wouldn’t live past the age of 3 then I wouldn’t get through my teens, then would be lucky to reach 30. Still here John – and 44 now. Next milestone is 60! There is always hope (as long as you are not dead!) thanks in part at least, to Anthony Nolan.

    Am rooting for you. (In the hopeful sense of the word if you get what I mean … )

    Like

  16. […] ***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.*** […]

    Like

  17. Gemma says:

    Reading your blog is like deja vu for me and my Husband he was diagnosed with the same lymphoma in November 2014 and after going through 4 grueling courses of I-VAC Chemo, 2 donors who feel through he had his Bone Marrow Transplant on 25th June 2015 and so far so good. Just wanted to say you are doing amazing and to turn your experiences into a way of raising awareness and money for Anthony Nolan is unbelievable commendable. Really hope chemo goes well and best wishes to you and your family.

    Like

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