Daily Archives: November 13, 2015

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.***
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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