Monthly Archives: November 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.***
 
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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John vs. Cancer #7: It’s a Kind of Magic

***Previously on John vs. Cancer: After three months of blessedly uneventful hospital stays and frustratingly uneventful home visits, our hero descended into a sort of distilled sulk and insisted on blogging about it. He’s pulled himself together now, thank Christ.***

Well, here we are again. The pumpkins are in the outside bin, the sparklers have been conscientiously buried in sand, the sky has assumed the uniform grey it will now wear until March and there are fucking chocolate reindeer in the Co-Op. It’s November, and I’m going back inside.

It’s so long since these blogs were anything approaching current that it feels very odd to be writing about things from the very near past (or very near future) rather than retelling stories I’ve already told on Twitter. I suppose that’s the upside of having an extremely quiet couple of months – one mopey, self-indulgent blog was all it took to get up to date. And after the longest, slowest, least exciting autumn on record, stuff is finally starting to happen again.

Tomorrow – four months to the day after I left London for what then felt like ‘the holiday where I feel too crap to join in’ and what I now realise was ‘the holiday where I was on the brink of death’ – I’m heading back to Barts to resume treatment. I’ve now had three rounds of ESHAP chemotherapy, the last in late September, and I won’t be having any more. Although the typical number of cycles can vary widely, most chemo treatments exhibit distinctly diminishing returns, damaging the patient more and providing a reduced therapeutic effect with each cycle. In extremis, I could perhaps have got away with one more round of ESHAP; given that it involves 130+ hours of almost constant intravenous fluids, most of them extravagantly toxic, I’m glad I don’t have to.

My next treatment goes, like Gandalf and Snoop Dogg, by many names. Some call it hematopoietic stem cell transplantation, some prefer ‘autologous transplantation’, still others substitute ‘autogeneic’ or ‘autogenous’ or ‘autogenic’ (as you’d expect, Autogenic evolves into Autogenous with the use of a Thunder Stone). Those impatient Americans often plump for ‘auto-SCT’, as if something this amazing isn’t worth spelling out. Gits.

It’s often called a bone marrow transplant, which isn’t really accurate – believe me, if anyone wants to cut into my bones for a third time they’ll have to kill me first – and in my experience most medical staff refer to it simply as an autograft. It’s the first treatment I’ve had that’s got a realistic chance of curing me; not just subduing the cancer, but kicking it the fuck off my front lawn for good. Until someone finally cracks the hoverboard, it’s as close to magic as anything else we can do.

I’ve been thinking about magic a lot this week. With the unerringly shit timing of someone who spent most of the summer working in an unventilated greenhouse and was admitted to hospital ONE DAY after moving to a brand new office, I very recently began playing a video game that offers some two hundred hours of gameplay, approximately one hundred and ninety of which will still be untouched when I head back to Barts tomorrow. In keeping with genre conventions, healing in Dragon Age: Inquisition relies on the use of instant-effect potions and twinkly restorative spells. Some games, like my beloved Skyrim, feature a wide range of ingredients and a correspondingly expansive list of potential philtres and decoctions; others prefer a simple bottled panacea, guaranteed to tackle the direst pixellated wound or fictional contagion.

When medical treatment goes beyond the impressive but readily understandable mechanics of cut-this-off-and-sew-that-up, it can be tempting to treat the whole thing as so much sorcery, entirely beyond the comprehension of those without ten years of training and/or a pointy hat. Throughout this odd autumn, I’ve found that knowing more or less what the various drugs and scans do, and why they’re doing it, is more reassuring than simply trusting in the benevolence of the people treating me. I do that too, of course, but it’s much more fun if you can peek behind the curtain once in a while.

Despite all the long words and elaborate chemicals involved, chemotherapy operates on an elegantly simple principle. Cancer in all its forms is uncontrolled, aberrant cellular growth, whether that’s in the form of an ugly great tumour, a patch of melanoma or a swarm of diseased lymphocytes. Cells reproduce by dividing, so if you can step in at just the right moment and stop one cancerous cell from dividing into two more, you can theoretically spoil the party. All classical chemotherapy agents work by in some way fucking up cells as they try to divide – if you want any more info than that, step this way.

The slightly enhanced level of detail you’ll find on the other side of that link represents the most I needed to understand about ESHAP for my own peace of mind. There’s much more to learn than this – I’m vaguely aware, for example, that Etoposide works by battering a particular enzyme that’s vital for cell division to work properly – but since I lack both the time and the inclination to retrain as a doctor, I’ve had to make a call re: the amount of science I really need to grasp, and the amount I’m basically willing to accept as magic. I have no doubt that this threshold is different for every person and every treatment, but that’s where it is for me and chemotherapy; I know the names of the drugs, I know basically what they do, and I’m confident that the combination I’m being given has been rigorously tested, not just inspired by a prayer or based on the doctrine of signatures.

This time round, my comprehension/wizardry threshold is a fair bit lower. An autograft, as I was going to tell you before I accidentally spent four paragraphs talking about magic and enzymes, is a procedure that allows the use of ruinously high levels of chemo without significant risk to the poor sod absorbing them (hi). In my case, this means a treatment called LEAM – six days of chemo, the last of which will feature a drug called Melphalan. Like my old friend Cisplatin, Melphalan is related to mustard gas (in fact, if you get hold of enough of it you can actually use it as a chemical warfare agent), and its speciality is absolutely wrecking your bone marrow. For many cancer patients, this would be a really grim side-effect; for me, since my bone marrow is churning out the cancerous blood cells, it’s rather the point.

The good thing about Melphalan is that it does a very thorough job, and there’s a good chance it will sweep the cancer out of my system for good. The bad thing is that it will leave me without an immune system. That’s why autografts are also referred to as ‘high dose chemo with stem cell rescue’ – after you’ve taken the chemotherapy agents involved, you’ve got a few days to somehow replenish your stem cells or, the next time a cold goes round the office, you’re dead.

Given the amount I witter on about Anthony Nolan, you may be thinking that this is the point a stem cell donor comes into the picture – and you’d be right, sort of, except that in this case the stem cell donor is me. After my last round of chemo, I spent a couple of weeks giving myself injections of a nifty drug that massively boosted my stem cell production. Then, when my overworked bone marrow had given its all, I spent four hours bleeding into a centrifuge (and, once the cannula was removed, all over my trousers – kids, if a nurse tells you to press on a needle site you should ACTUALLY press, not just hold a bit of gauze over it like a ninny). My stem cells were separated, drawn off and biked straight to Harley Street to be frozen, and the day after my chemo finishes they’ll be pumped back into me to replace their dead comrades.

(Yes, this means I’m having my transplant on Friday 13th. I was originally scheduled to do all this three days earlier, but some other idiot actually objected to having a procedure on the 13th itself. I am firmly of the opinion that anyone who turns down medical attention because of the day of the month doesn’t deserve the treatment, or whatever they were going to have for lunch, or oxygen.)

There are all sorts of things about the autograft I don’t understand. I don’t know how my cells can be extracted, frozen, thawed and reinserted, and still do a job of work at the end of it. I don’t know how, as new research is suggesting may be the case, they can be reset by their experience and return with a hitherto-absent ability to spot and attack cancer cells. I don’t even really understand how a freezer works.

I do understand, though, that there’s about a 2% chance of this procedure killing me, because I’ll be completely defenceless for a week or so while my stem cells unpack and settle back in. I understand that even if it’s completely successful, even if I appear to be cured, I may not stay that way. I understand that we are a long fucking way from washing our hands of this raging inconvenience, and that if I make it as far as next year’s planned allograft I’ll be faced with perhaps a 10% chance of dying and a substantially higher likelihood of long-term problems – fatigue, skin complaints, jaundice. This is not a golden ticket.

BUT.

I know all of the above still sounds a damn sight better than dying back in July. I know my doctors, who don’t eventually have to take things on faith but actually understand the science all the way down, think that an autograft transplant, followed by an allograft transplant, represent my best chance of a cure – and that, incredibly, a cure is entirely possible. I am incredibly lucky to know that my sister’s stem cells are a perfect match for mine, so I won’t have to wait and hope for an unrelated donor to sign up to Anthony Nolan. And most importantly, given the ongoing and utterly unconscionable behaviour of the Secretary of State for Health, I know I will be cared for by talented, dedicated, compassionate men and women every step of the way, and that my treatment will be free at the point of use. And that, even more than all the ingenious drugs and futuristic transplants in the world, seems pretty fucking magical to me.

***Next time on John vs. Cancer: who knows, frankly. Best case scenario: good news about the transplant, plans for Christmas, maybe a new hat. Worst case scenario: a very short blog written by Ella. Vote with the red button… NOW.***
 
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.

JustGiving - Sponsor me now!

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