John vs. Cancer #8: Timing Is Everything

***Previously on John vs. Cancer: Rested, harvested and full of convoluted video game analogies, our hero finally got himself ready to head back to Barts and start preparing for a stem cell transplant, auspiciously scheduled for Friday 13th. That’d be today.***

I wasn’t planning to write a blog this week. In fact, part of the reason I wanted to bash one out just before being readmitted was to make absolutely sure I didn’t feel guilty or lazy during my pre-transplant chemo – I’d been told that this cycle could be an awful lot more grim than my previous rounds, and writing coherently on a cancer ward is difficult enough even when you’re not shitting water or croaking through a throatful of blisters. As it happens, the last six days of LEAM chemo have actually proved to be pretty manageable (although I’m assured that my galloping mucositis and total hair loss are definitely in the post). And since I’ve still got about six hours before the ‘high dose chemo’ is followed up by its traditional dancing partner, ‘stem cell rescue’, what I’m technically doing today is dying.

The plan, obviously, is to swoop in before I actually finish dying and sort things out a bit – but even being temporarily fatally poisoned feels like quite the daring gambit on a murky Friday morning. Yesterday’s infusion of Melphalan (you remember, the mustard gas from my last blog) is even now charging round my body killing every stem cell it can get its hands on. Once 24 hours have elapsed and it’s gone off the clock, I’ll be receiving five bags of my own defrosted cells with the intention of restoring my crippled immune system. I’ll have a week or ten days of being at enormous risk of infection, then with any luck I’ll start to get back to normal; normal levels of white blood cells, and a normal absence of lymphoma. It’s all pretty amazing stuff.

This is my fourth hospital stay and fourth round of chemo since July, and whilst the last couple of visits have been relatively samey I’m noticing some real differences in my treatment this time round. Before I say anything else, I want to be absolutely clear that this doesn’t mean I feel less well looked after, or less of a priority (although God knows I’m never sorry to be one of the less urgently ill patients on the ward). But what with one thing and another, this has been a very different experience.

The first and most noticeable departure from my previous chemo routine is the sudden importance of timing. Whilst the 30-hour days of ESHAP meant that rounds 1-3 inevitably ran late, this cycle has been reliant on fairly rigid timing and incredibly disciplined, well-structured care. In the last week I’ve been having two bags of IV Cytarabine a day, and although they’re relatively small they can’t be administered within roughly eleven hours of each other. That generally means that one bag is given by the night nurse and one by the day nurse, either at the very end or very beginning of their respective shifts. Somewhere in the middle I’ve been having several hours’ worth of Etoposide, which has to be delivered very carefully because, given half a chance, the drug can precipitate out of its saline bath. I’ve also needed two blood-thinning injections per day to guard against DVT – again, delivered just far enough apart to necessitate the involvement of two separate nurses on two barely intersecting twelve-and-a-half-hour shifts.

All of the above, however, paled into insignificance yesterday when I reached Transplant Day -1; the final day of chemo, and the one that earns this cycle its ‘high dose’ moniker. Once mixed in the chemo pharmacy, Melphalan has a shelf life of just ninety minutes, so getting it upstairs, onto a stand and into the patient (who must be given an hour’s worth of saline, plus IV steroids and antiemetics, immediately before the main event) is an incredibly precise affair. Yesterday, that meant the ward sister forgoing her break to make sure I got my treatment at the right time. “They won’t stop until we’re on the floor,” she said cheerfully, before heading off to work another three hours on top of the nine she’d already completed.

But the importance of timing goes far beyond fast-expiring drugs. Just as crucial as the to-the-minute delivery of my Melphalan yesterday were the conversations I had across the day with five or six members of staff, all of whom realised I was frightened and took a few minutes to chat and calm me down. The duty doctor talked me through some changes to my pills, one of the nurses commiserated with me over the miserable necessity of daily weigh-ins, and another teased me about my ongoing horror of the blood sugar monitor. Best of all, when the dinner trolley turned out to have one extra curry it was immediately given to Ella so we could have a rare meal together.

Nor does this consistently above-and-beyond standard of care stop once you’ve finished being actually treated for the day. Yesterday evening, my night nurse made a point of telling me she’d get my catheter redressed before the end of her shift, and then stayed late this morning to do so. The nurse who took my pulse and blood pressure at 6am fastened the inflatable cuff in near darkness rather than wake me up by putting the light on. Only this afternoon, my consultant popped in and asked about the progress of my NaNoWriMo novel (impressively static at fourteen words), and then let me babble on and ask convoluted medical questions until I was visibly more relaxed; never mind that I’m only one of some thirty-five or forty patients he’ll be personally visiting this afternoon.

With the ward currently almost at capacity, slightly understaffed and liberally decorated with ‘Enteric Exclusion Zone’ notices that indicate the rooms of patients in the grip of a chemo shitstorm (all shitstorms are enteric if you get right down to it), every single doctor, nurse and orderly on this floor and in this hospital is working all hours to keep us safe, get us well and make the experience of inpatient cancer treatment less unpleasant than it could very easily be.

Since I was admitted on Saturday night I’ve been visited by seven doctors, two physiotherapists, the ward manager, a clinical nurse practitioner, a dietitian, twenty-odd nurses of varying stripes, cleaners, dinner ladies, orderlies, hospital volunteers and a chap who came to test the smoke alarm. I have not had a moment’s cause to doubt any of their commitment to their jobs or to my welfare, whether their contribution to that is working all weekend to oversee my admission or mopping the floor of my room when I’ve carelessly wandered about with a dripping teabag. Everything that needs to be done is done, in good time and with good cheer, and when there’s not enough time then more is found – from coffee breaks, or lunch breaks, or time that should be spent at home and asleep. And I have never, not once in four months of regular inpatient care, heard anyone complain.

The NHS is not buildings or scanners or drugs, it is not holistic treatment for the deliberately obese or dance classes for otherkin or a massive con to give all our donated organs to immigrants, or whatever the Mail is telling you this week. It is people – people who earn less and work harder than they’d have to in the private sector, because the NHS has got a good case for being humanity’s proudest achievement to date and some things are more important than a pay rise. But not asking for a pay rise isn’t the same as mutely accepting a pay cut, or enduring even more difficult working conditions, or looking the other way whilst the flimsy safeguards protecting you from working dangerous hours are cut in the name of an unachievable, undesirable ‘7-day NHS’ that prioritises snappy headlines and dogmatic austerity measures over patient care. Of course the junior doctors are going to strike. Wouldn’t you?

As a patient who will most likely be directly affected by the industrial action planned for next month, I think it’s worth really nailing my colours to the mast. I fully support whatever action the BMA feels justified in taking in the face of this, the latest and most shameless in a series of capricious, underhand attacks on the majesty of the welfare state. What’s more, I think it’s extremely telling that the first junior doctors’ strike in our history will likely take place during the first months of the first Conservative government in 18 years. Like the National Minimum Wage, like tax credits, like the institution of the fucking weekend, the NHS is an achievement to which the Tories can lay absolutely no claim – as with all policies designed to support the many rather than the few, it is the exclusive work of the labour, and Labour, movement.

So when that festering zealot Jeremy Hunt has the gall, the absolute fucking brass neck to suggest that the proposed strikes will erode patients’ faith in the NHS and its dedicated, underappreciated workforce, I would like to respond thus: not in my name, you conniving fucking hypocritical management consultancy ideologue cunt. And if the incredible men and women in this hospital manage to cure me before you’ve driven them all overseas or out of the public sector, I will never forget that they did it against a backdrop of constant abuse and misrepresentation from your department. The continuing efficacy of the NHS in these trying times is a testament to its superhuman staff; your willingness to attack it in pursuit of short-sighted savings and the prospect of a political legacy is your lasting shame. Get fucked.

***Next time on John vs. Cancer: just a series of sketches showing the Cabinet dying from preventable diseases, I think. Nice to keep it simple once in a while.***
 
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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37 thoughts on “John vs. Cancer #8: Timing Is Everything

  1. Jools says:

    Hear, hear! (Gives John a standing ovation.)

    Liked by 1 person

  2. John says:

    This post – with paragraph 10, in particular, an absolute fucking belter – is the single best piece that I’ve read on why the NHS deserves all of our support. Fuck you Jeremy Hunt.

    Like

  3. Alicia says:

    John, you rock. Best post yet.

    Like

  4. Catherine says:

    Again you’ve reduced me to tears totally agree fuck you Jeremy Hunt

    Like

  5. Sally says:

    Three cheers John – I’ve never read a better defence of the NHS and the compassionate, dedicated people who work in it. We all need to stand up to the dodgy politicians and the despicable gutter press who are constantly trying to undermine this amazing institution.

    Like

  6. Lowri says:

    John, this is air punchingly tremendous.

    Like

  7. Jane Cranny says:

    Brilliant blog and was cheering you on at the last para! I can never hear the name Jeremy Hunt without mentally tagging on ‘-rhymes-with-cunt’. The NHS saved my life and makes me proud!

    Like

  8. Patricia says:

    Moved as always by your post. Heartbreaking to think patients like yourself will be impacted should that fucker Hunt get his way. You’ve written a superb piece demonstrating the care and commitment of NHS staff, and this despicable government should be ashamed. You and Miss Ella battling this illness in your own unique way, continues to be an inspiration xx

    Like

  9. Kelly Doonan says:

    Sheer poetry. Thank you for expressing what so many of us are thinking so articulately.

    Like

  10. Helen says:

    Well said John. My sister had stem cell transplant at the beginning of the year. The care was fantastic. We as a family are so grateful for the NHS and all it’s staff and are 100% behind whatever Dr’s or nurses need to do to get things changed. Good luck with the transplant. Hope the next few days go quickly. You can do it!

    Like

  11. Linda McKellar says:

    Fantastic blog John. Good on you and good on the NHS.

    Linda X

    Sent from my iPad

    >

    Like

  12. anon says:

    I’ve been reading all your posts, and following you on twitter. And this one made me cry. As a junior doctor, on behalf of all of us, thank you for your support. Don’t believe the government – we don’t want to strike, and we don’t want harm to come to any patient. We just think we (and every one who works at the sharp end of the NHS – the nurses, the HCAs, the physios, the OTs, the porters, the radiographers, the domestics and the men who come to fix the fire alarm) and the general public in their turn are being royally fucked over. I wish you all the very very best with your treatment, I hope those cells do their thing and soon cancer is a distant memory to you.

    Like

  13. Claire says:

    You superstar!
    Kick that lymphoma in the balls and give it an extra kick for us NHS docs!
    If only Mr Hunt had a clue what we do and another clue about what he is doing to staff and patients!

    Like

  14. Perfect. The best of luck to you and the junior doctors. Mr Hu*t can go screw himself.

    Like

  15. Jenny says:

    John, you bloody legend. You brought a tear to my eye. Thank you for standing up for us. Now go and kick the shit out of Lymphoma’s arse. Wishing you a very speedy and smooth recovery!!! X

    Like

  16. […] Source: John vs. Cancer #8: Timing Is Everything […]

    Like

  17. Jas Peacham says:

    John you are fantastic and have eloquently and articulately summarised all the dedication and commitment my husband Bill has just received within 5 months continual inpatient chemo fighting lymphoma in Nottingham – hunt and the govt have no clue how they threaten our great NHS institution: you do! I hope Jeremy Corbin is following your blog. Bill is in remission – I hope you get there soon too. Thank you for sharing.

    Like

  18. Ian Whitlock says:

    good luck john.

    a great piece. 100% behind you and the nhs which saved my life 7 years ago and for whom my lovely daughter works as a radiographer working loads of overtime as they are understaffed.

    rooting for you. ian

    Like

  19. Miranda says:

    Not sitting on the fence then?! Long live our NHS and long live you darling. Excellent blog as per usual. I hope all goes well in your next stage and God bless all the lovely staff who take care of us. xx

    Like

  20. Kirsty McQuarrie says:

    I don’t usually read blogs but this one caught me eye. Despite your current situation you have found time to describe your reality in a way which is informative yet humbling and also kicks Jeremy Xunt in the bollix. Top bloke John, I wish you well for your transplant. You are in good hands, Kirsty, proud nurse, xx

    Like

  21. Tracy says:

    5 stars. Don’t stop writing. This is brilliant.

    Like

  22. Lisa says:

    My husband was also in Barts (9 months of treatment for apl and three admissions). The staff there are wonderful – they really do make you feel looked after.
    Your treatment regime sounds very heavy at the moment – hope it goes well and you continue to feel cared for by the staff at Barts.

    Like

  23. Liz says:

    Hear hear! Anthony Nolan charity does amazing work.

    Like

  24. Ginny says:

    This is my favourite take-down of Tory fucking ideology of all time. I don’t know you (obvs.) but I find myself rooting for you and wishing you both only the very best. I work in the NHS and your appraisal of the situation is spot-on – thank you.

    Like

  25. Anthea says:

    Thank you so much as an oncology reg your support is wonderful. Good luck with your treatment, I can’t believe that you can even think of others but the fact you have noticed what we do everyday means so much. Do you fancy a job as health secretary when you are better!

    Like

  26. Another entertaining post. I have enjoyed every one and I think a book of your posts would be a great fundraiser for Anthony Nolan. I hope the stem cell transplant goes well and you return to full invigorating health.

    All the best

    Liked by 1 person

  27. Claire says:

    Great blog

    Like

  28. Berry O'Leary-Profit says:

    Wow. Bravo!Always in awe of human beings who, despite being in the midst of fighting for survival, recognise and salute the dedication meted out by our wonderful underpaid overworked under appreciated NHS staff! Keep writing and fighting with your powerful weapon of words. Wishing you well & thinking of you!

    Like

  29. Lou says:

    Thank you! That’s a heartwarming post for all us doctors.

    Liked by 1 person

  30. Oh my life! I can’t believe you’ve only gone and done it – you smashing chap (see comment on previous post with slightly inappropriate request from me that you put your considerable skill into general saving of NHS). Knew that what this debate needed was an articulate, empassioned patient response. Fab to see it, what with you being fairly busy surviving and all.

    Like

  31. susiegb says:

    I’m an NHL (mantle cell) survivor – been in remission for 8 years so far … I don’t see much sign of you needing reassurance, but just wanted to confirm that there is life after NHL – I go for days without thinking of it nowadays! And, I live in Australia these days but have just come back from a visit to London. Was horrified by the current UK government’s attitude to the NHS, and junior doctors in particular – had relatives among the young doctors going on a big demo a few weeks back. Your blog should be require reading for all NHS bureaucrats and its Minister … (Can anyone explain why someone so anti the NHS should be put in charge of it?!) Hope your post-stem cell transplant recovery is going well and you’ll be strong enough to post another instalment soon!

    Like

  32. Brilliant spokesperson for the NHS John…..thankyou!
    I am an NHS worker, supporting families with babies in Intensive Care. My service has been tendered out. It not only feels like my service is being sold but the 5 staff in it too. The NHS are unlikely to win the tender!!!
    And to you, I applaud you in how you are fighting your disease, your writing and how you show your appreciation of the carers in our dying NHS.
    Wishing you continued strength in your battle, XXX

    Like

  33. Hannah says:

    Hello!
    I have never met you, but just wanted to say THANK YOU for finding time in your busy schedule of unending medical horror to write this entry. As a doctor, I am hugely appreciative that you found the energy to write something coherent yet impassioned about the current situation we currently find ourselves in. Working in the NHS can be a shocker sometimes but reading this is a nice reminder it is entirely worthwhile. Nice one!

    What you are going through sounds extremely shit. I do hope your treatment works completely, and that you go on to live a long life of wittily calling out terrible MP’s using creatively fruity language (along with a family, a nice house, a job etc.)

    Best of luck with everything and I’ll sling some cash Anthony Nolan way (fingers crossed my stem cells match with yours n’ all.)

    x

    Like

  34. Insightful writing, and thank you for supporting junior doctors. I worked on a transplant ward for a while last year and I think it must be one of the most gruelling ordeals the human body can be put through.

    Like

  35. Adam Brown says:

    I worked in this unit as a junior doctor back in 1998-1999. It was the most humbling experience of my life, and I had the honour to work with some amazing and dedicated colleagues, and some amazing and inspiring patients, some of whom I will not forget until the day I die. You have written with such amazing eloquence, and have managed to distill the whole ethos of the unit and indeed the NHS as a whole into one excellent post.
    Your points regarding Mr Hunt are bang on the money.

    Well put, sir. I wish you a speedy recovery and an uneventful transplant.

    Like

  36. Julie says:

    Are you doing okay? Been a while since we have. Heard from you on here.

    Liked by 1 person

  37. […] ***Previously on John vs. Cancer: whilst waiting to be saved from certain death by an autologous stem cell transplant, our hero got extremely fighty about his beloved NHS. He returns to this blog after an unprecedented two-month absence*** […]

    Like

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