John vs. Cancer #13: The Moving Finger Writes

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

I think this will be my final blog.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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16 thoughts on “John vs. Cancer #13: The Moving Finger Writes

  1. Have emailed MP. You and Elle really are an inspiration.

    Like

  2. ELLA. You and Ella. I can spell really.

    Like

  3. Ian Whitlock says:

    I will miss your posts but am absolutely delighted at your progress towards normality. Sincerest best of luck to you and yours. Absolutely with you in your opinion of 2016 and giving the insects a chance one day.. But you are a bright spot, it has to be said. Best regards the Whitlocks from Leatherhead..

    Like

  4. Heather Dixon says:

    As usual you have managed to make me laugh and cry. Looking forward to the book (can I buy a signed copy please?). You are a Cancer hero!! I will miss your blog but will continue to follow you and Ella on Twitter and look forward to hearing about your continued return to full health. Best wishes from a virtual friend who has signed up to Delete Blood Cancer, written to my MP and will continue to take any action I can to support the wonderful work of Anthony Nolan and the NHS. Good Luck.

    Like

  5. The Millers Tale says:

    MP duly contacted. The very best of luck and piles of fervent hope that the cockwombling cancer has got bored of you- and every other person on this planet. I want to make a sick comment about Trump as exception but I won’t except in this rather passively-aggressive manner WHICH FOOLS NOBODY.

    Like

  6. Leanne says:

    John – I am thrilled that you have run out of things to write about. My local MP is an utter fucknugget (John Whittingdale, give him a Google for a shits and giggles) but I have written to him anyway. Keep being wonderful.

    Like

  7. andrewj72 says:

    Still slightly annoyed at your chimerism score, because from where I’m sitting it looks a bit like showing off. 🙂 Have thoroughly enjoyed reading these over the past year. Here’s to your continued recovery.

    Like

  8. Alicia says:

    John I was so excited to see your post. Then I read it will be your last, because you are doing so well. Had I not had cancer myself I wouldn’t have been tuned into your story in the first place. I am so glad to know you and would absolutely love to know when your book comes out. Sorry you’ve had your political sh**storm, we here in the U.S. are certainly having ours. Prayers to all of humanity! (I agree maybe the bugs have a better chance of getting things right.) Cheers and love.

    Like

  9. peter hare says:

    Whilst I completely understand your description of the crapshoot that surviving cancer really is, I have to believe that you attitude stacked the cards in your favor John and you have been a terrific role model for many of us if we were to find ourselves in a situation anything similar.
    Thank you for inspiring us on your description of this incredible journey

    Like

  10. Dee says:

    Well said! And my best wishes. Dee

    Like

  11. Gaby Charing says:

    Well done, John. I wish you and Ella the best of everything.

    Like

  12. Matt Smith says:

    MP emailed but he is a Tory so it’s a long shot. Thank you for an amazing and inspiring blog and I look forward to the book. My and I both gave our spit to the good folk at AN and she got the call to donate in Feb. AN looked after her like a star and hopefully someone has benefited and is on the same road as you. Best wishes to you both in the future.

    Like

  13. Miranda says:

    God Bless and thank you darling! You have made a difference with the added bonus (selfishly) that I have really enjoyed your writing. If you do have anything in print coming out soon please do let me know! Have a happy, healthy future xxx

    Like

  14. Alison says:

    I am so happy for your reprieve! I can’t do anything about Brexit from here, but I can do my part to make sure the orangutan-toupeed mentally-ill candidate here doesn’t come anywhere near our Presidency.

    Liked by 1 person

  15. Bernadette OLeary-Profit says:

    Well, you had me at ‘I’! Thank you for posting this update. It’s very disheartening when people who you’ve followed & invested part of your ‘spirit/soul/time/heart’ (multiple choice) disappear! So glad you are using your pen and prose to enlighten the brexiteers. I will miss the blog but glad it’s because the medical news has become ‘normal’. And yes, because of your words, I will be writing to my mp (even though you may be right about the insects) & yes, I will be forwarding your words on to many. So, thank you again on behalf of all of us who need reminding and a kick in the butt to act!! Wishing you well! Berry

    Like

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