John vs. Cancer #4: Give Me Cytotoxins or Give Me Death

***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.***

Following the excitement/trauma detailed at self-indulgent length in the last instalment of this blog, I had a few days more or less to myself before starting chemotherapy. Whilst they quietly pass in the background (you’re not missing much; various pals came to visit and I spent a lot of time watching clips of Robot Wars and eating smuggled meatballs), I thought it might be a good idea to explain a little about how chemo works both generally and in my case – it’s taken me weeks to get a handle on it all, so I might as well pass on what I’ve picked up. By all means skip this bit and head down to the as-yet unwritten paragraphs in which I intend to bitch at length about my roommates, but I think it’s all quite interesting.

Chemotherapy (from the Arabic and Greek for ‘alchemy’ and ‘healing’), is the treatment of cancer using drugs. Other options include radiotherapy (also very good), petitionary prayer (logically inconsistent and theologically bankrupt) and ozone therapy (utter fucking bollocks, despite the recent protestations of one awful knob on Twitter; apparently anyone who’ll take a doctor’s advice rather than self-medicating with cannabis oil is a shill for Big Pharma). I didn’t fancy the last two, and radiation only really works on solid tumours, so chemo it was.

As a rule, chemo is delivered in preset regimens that combine the effects of various drugs over a series of short, intense cycles. As it happens, the first successful chemo regimen was developed to treat lymphoma, and fifty-odd years on there are all sorts of shiny new treatments for what I now fondly think of as the shit-for-blood brigade. These days, the favourite treatment for non-Hodgkin’s lymphomas is a nifty little set menu called R-CHOP, which is both an acronym for the drugs it contains and the sort of name I’d have given to a droid if I’d ever had few enough friends to write Star Wars fanfic.

Unfortunately, for reasons I haven’t had any inclination to discover, one of the very few things we know about hepatosplenic T-cell lymphoma (that’s my cancer, do try to keep up) is that R-CHOP doesn’t work on it – in fact, there’s some evidence that it may have a negative effect. Told you it was a hipster one, didn’t I? This means that I’m on a slightly more retro treatment called ESHAP, which stands for:

Etoposide, a topoisomerase inhibitor. As far as I can make out, this means it attacks a particularly crucial enzyme during cell division, compromising the genome and leading to cell death. The other week one of my cannulae got dislodged and some of this spilt on my leg while I was having lunch. I was going to wipe it up and apply myself to that day’s cheery mound of stodge-and-custard, but a nurse drifted in, went fully mental and fetched a special ‘cytotoxic spillage kit’ with which to sterilise everything in a half-mile radius, so I’m guessing it’s not an especially caszh-caszh kind of drug.
Solu-Medrol, which is the American brand name for a steroid known over here as Methylprednisolone. Straight up dissolves lymphocytes, no messing. Also the thing that’s continuing to give me steroid-induced diabetes, although that’s pretty much calmed down now (he says, typing with one hand because he’s currently eating a biscuit).
High-dose Ara-C. Otherwise known as Cytarabine, this is a really clever one. It’s a combination of cytosine, a DNA base, with an arabinose sugar (I thought sugar just came in ‘white’, ‘brown’ and ‘blood’ flavours, but what do I know?). Cytosine normally combines with a sugar called deoxyribose to make deoxycytidine, which is an important constituent part of human DNA (that’s deoxyribonucleic acid – come on, I know you remember this stuff from GCSE Biology). Cancer cells are absolute whales for sugar, so they hoover up the Cytarabine – which looks pretty much like deoxycytidine in a poor light – and incorporate it into their DNA when they divide. Then it kills them.
Platinol – we say Cisplatin, the Americans say Platinol, let’s call the whole thing off. It’s made from actual platinum because I make it raiiin, and it causes DNA crosslinking (exactly like mustard gas), which causes cell death and, if you’re not careful, person death. This is the real bastard – my dose, which is pretty high because I’m a massive human, is 55mg delivered over 24 hours, with a couple of litres of saline to dilute it. In terms of actual weight of drugs, that’s 11% of the quantity of active ingredients you’d find in a single tablet of paracetamol. It’s also why every bag of actual chemo (in this list, that’s everything but the steroids) has to be checked off by two nurses, one of them reading the bag and the other one checking my hospital bracelet, to make sure it’s definitely my dose – I’d probably be alright with someone else’s (see above re: being a massive human), but if some little seven-stone weakling on the verge of an immune crisis got my Cisplatin it would fuck. them. up.

On top of the above, my personal chemo-plus regime also includes intravenous Ondansetron (for nausea) and daily or twice-daily tablets of folic acid (boosts red blood cell production), Fluconazole (warns off oral funguses that might otherwise take advantage of my damaged immune system), Aciclovir (ditto, but for viruses generally), Allopurinol (stops my kidneys packing up from all the extra dead white cells they’re having to shift), Ciprofloxacin (antibiotic), Gliclazide (for that pesky blood sugar), Lansoprazole (protects against steroid-induced stomach ulcers) and Domperidone (even more antinausea, and THRICE daily). It’s a wonder I ever have time to get round to any Premium Creamed Potato, frankly.

Right, now you’re basically up to speed I’ll get back to poorly constructed anecdotes and swearing. (If you chose to skim through the pharmacology lesson – and why wouldn’t you? – this is probably a good place to rejoin the group.) I was told that my first (and, of course, quite possibly only – more details in blog #2, where I went on at some length about my chances of not responding to treatment) round of ESHAP would last four and a half days, which turned out to be arrant nonsense of the sort that we all blithely accept from people who, like doctors, plumbers and Amazon couriers, have access to forbidden knowledge. (We should do less of this, because if everyone made a fuss about the sheer frequency with which sentences like “It’s already out for delivery, sir” or “I’ll have that part before the weekend, squire, and I’ll definitely remember to come and fit it” are employed in our day-to-day lives then we might get something done.)

ANYWAY, it transpires that chemo days not only bear no relation to the calendar but also exhibit no internal consistency either. Exhibit A: the first four days of my chemo regimen each consist of 46 hours and 45 minutes of intravenous drugs, except for day one which is 48 hours and 45 minutes. Happily, the two longest infusions (24 hours of Cisplatin and 19 hours of saline) are able to run concurrently, taking the total down to a broadly manageable twenty-seven and three quarter hours (again, plus two on day one). You might, on this basis, assume that the half-day at the end would be somewhere in the fourteen-hour range, but in fact (Exhibit B) it’s a baffling thirty minutes long – just enough to squeeze in one extra bag of steroids and make sure I have an extra few days of shying away from cake and being stabbed in the fingers every six hours. That’s the sort of logic we’re dealing with here.

Once you factor in the need to flush every line between every dose, the double-stamp requirement on every chemo bag, the fact that even when you only need one nurse you’re inevitably competing with other patients, the speed with which chemo destroys your veins and wears out your cannulae, the challenge of fitting in an occasional shower and all the rest of it, a full day of chemo can take anything between about thirty and thirty-six hours. My first cycle ran from 3pm on the Monday after my diagnosis to about 11am on the Sunday, which was actually on the prompt side, but my God, it felt endless at the time.

To be fair, though, ‘a bit fidgety’ is a pretty good way to feel when you’re on high-strength chemo for an ultra-aggressive lymphoma that had you, ten days beforehand, on the genuine verge of death. The truth (and I know this isn’t very interesting if you’re here for gory details) is that since about a day after being put on steroids back in July, I haven’t felt ill at all. The classic chemo symptoms – nausea and vomiting, loss of appetite, swollen and ulcerated mouth, tendonitis, all the rest of it – have completely passed me by both during and since my initial round of treatment, probably through a combination of good luck and being reasonably young and robust. Whatever the reason, the chemo itself was pretty solidly anticlimactic; and while it’s always nice to be the most boring patient on the cancer ward, I was less thrilled with also being the most bored one.

I found two main ways of passing the time during Chemo Round One. The first was hating my various roommates, who came and went but generally stuck to the principles of a) being worse than the one before, b) staying longer than the one before and b) getting progressively more awful the longer they stayed. Just like with the carefully planned combinations of chemo drugs, these factors combined in what I believe is called a synergistic fashion to make me feel progressively more tempted to smother the fuckers in their sleep. Sam the cheery electrician was the only one I managed to have a normal conversation with, but he left the night before my diagnosis. In fact, my very first use of the cancer card – barely five minutes after I’d actually been issued with it – was to beg my consultant to be allowed to move to the newly empty window end of the room, “given everything that’s happened”. Bless the man, he moved the bed himself.

After Sam’s departure I had a couple of quiet days before being joined by Anonymous Roomie 1. He stayed just one night and wasn’t, to be fair, any real bother, although I did overhear him telling a nurse that he didn’t smoke or drink and “find[s] it difficult to finish sandwiches”, which (assuming none of them were symptoms) made him instantly the most boring man on earth. He disappeared whilst I was having my PET scan the next morning, and I hope that wherever he’s gone he has at least learnt to tackle a sandwich like a grown-up.

Anonymous Roomie 2 was a young man who was admitted from the Barts hostel, a B&B/halfway house for people who live a long way from the hospital or are nearly-but-not-quite ill enough to need admission. In the case of AR2, I think his white count had dropped into the danger zone and he’d been brought onto the ward in the hope of warding off an infection. He spent two days looking basically dead, then perked up and started sneaking in huge volumes of visitors, who typically arrived around an hour after the end of visiting hours and produced endless boxes of chicken and chips, like a slightly more urban version of Brittany Murphy’s creepy dad in Girl, Interrupted. My only real gripe with AR2 was the entire evening which he and a particular mate spent discussing a) AR2’s time on the West Ham youth squad and b) the mate’s plan to get a second-hand Bentley, both of which are shit things to talk about, but having until recently thought he was literally dying in the next bed it was hard to resent him too much. This wasn’t really a problem, though, because it meant I could save up my resentment for my third and final roommate.

I did learn my third roomie’s name, but I feel like it wouldn’t be very fair to use it, so I shall call him the Imam. That’s how he introduced himself to me during our one conversation, which went as follows:

Self: *potters past the Imam’s bed, inadvertently makes eye contact, smiles awkwardly*
The Imam: I am an imam.
Self: Oh, really? Jolly good. I’m John.
The Imam: How many children?
Self: Errm, none. I’m 25.
The Imam: That is very bad.
Self: …
The Imam: *closes eyes*

The Imam served a dual role during our week or so together, uniting the disparate fields of ‘chemotherapeutic cautionary tale’ and ‘raging pain in the arse’ in one grumpy bearded package. He was undergoing a fairly harsh round of chemo – harsh enough that for several days his immune system was being supplemented with his own previously harvested stem cells, which is a thing you only really have to do if the treatment is completely eradicating your bone marrow along with the cancer. This meant a lot of throwing up, which was unpleasant but hard to hold against the poor sod. If he’d stuck to the vomiting I think we might have got on.

He didn’t stick to the vomiting. If he wasn’t throwing up he was being horrible to the nurses, if he couldn’t think of any complaints he was praying in an endless monotone and/or listening to an exceptionally tinny call to prayer on his phone, and if he got bored of that fun little combo he was ignoring his drip stand alarm (which was usually bleeping because he’d gone to the bathroom in the night and neglected to plug it back into the wall) for hours and fucking hours until I had to ring a nurse and beg them to silence either it or him. I tried very hard to be patient, but when he was wheeled off for tests one night and abruptly moved to a side room without ever returning, I offered up a small grateful prayer of my own. (As I type I’m back in Barts, and he’s in the room next door. We haven’t resumed our conversation, and unless I acquire some kids to tell him about I sort of doubt we ever shall.)

The second way I found to kill time was, as you may know, by becoming an extremely accidental news story. On evening one of my chemo, plodding through the various short bags as I approached that dreaded 24-hour dose of Cisplatin, I set up a JustGiving page in the hope of scraping together a few cancer-fuelled pity pennies for Anthony Nolan (on whom more below, and at the link, and on Twitter, and everywhere really). I thought five hundred quid would be a nice target; it was one that we might feasibly meet by the time I left hospital in three and a half weeks’ time, and funding the inclusion of five new potential donors on the AN stem cell register felt like a worthwhile achievement. Ella (whose idea the fundraiser was) talked me up to a round thousand pounds, which I thought borderline vainglorious but decided probably wouldn’t actively put people off donating. I also wanted to wait and launch the page alongside the first instalment of this blog, which I was planning to write the next day, but we ended up putting it live on its own because, as discussed, chemo is boring.

The fundraiser hit its initial goal of £1,000 in about forty-five minutes, and by the time my first day of chemo wound up we were on just over £15,000. Over the next couple of actual calendar days, I ceased to be John Underwood, sometime journalist, and became “Twitter fan John Underwood” (The Times), “Cancer sufferer John Underwood” (The Daily Telegraph), “Stem Cell John (The Sun) and, unforgettably, “gnarly” (FHM). The very first of these blogs was republished by the New Statesman, then the first two made it into the actual physical Times along with a very flattering profile and some equally unflattering photographs. I somehow developed a habit of wearing increasingly elaborate hats in Instagrams that were then appropriated by the nation’s media. And by the time the last tube was disconnected and my first round of chemo staggered to an overdue halt, we’d raised fifty thousand pounds for Anthony Nolan. (It’s just over seventy-seven grand now – ninety-three when you add Gift Aid – and if you’ve sent a donation or spat in a tube or retweeted one of my endless nagging tweets then I will love you forever).

Becoming very mildly famous because you might be dying is an extremely odd scene, but it has its perks. We managed to keep things from becoming too insane by refusing all broadcast media requests – after all, what could I have told Newsnight about cancer that they didn’t already know? It’s a fucker, and we ought to cure it, and eventually we will. Interview over. Twitter’s been largely brilliant, albeit with a few mad twats cropping up to tell us that chemo only works in 3% of cases and so on. If I survive this whole palaver I’ll come out with my career in its best ever shape. And, displaying a nose for business that rivals her demonstrably impressive nose for cancer, Ella has managed to parlay the inconvenient ‘boyfriend has cancer’ situation into an excellent series of columns on, of all things, lipstick. Anthony Nolan’s registered a 46% rise in requests for stem cell donation test kits, I’ve twice been recognised by strangers (one of them called me “the infamous Underwood”, which was arguably the highlight of my life to date), and my friend Felix has invented a bone marrow cocktail named after me. And, best of all, I ended up not being remotely bored.

***NEXT TIME ON JOHN VS CANCER: Tube is in the Heart, sung to the tune of the Deee-Lite song of nearly the same name.***

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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15 thoughts on “John vs. Cancer #4: Give Me Cytotoxins or Give Me Death

  1. gellybean999 says:

    Keep with it. I had a Hickman line fitted before Chemo started and it was brilliant, two free arms whilst chemo going on, and you could sleep without the line getting a kink in it.

    Like

  2. Jane Cranny says:

    You are truly famous when The Sun gives you a moniker, Stem Cell John, another brilliant blog! My first round of chemo was called FEC..I mean, really?? That was just a gift to go into the chemo ward saying ‘FEC off breast cancer’ and generally behaving like Father Jack. Here’s hoping the poison is kicking the shit out of those nasty little cancer cells xx

    Liked by 1 person

  3. Marea says:

    You’re an inspiration, John. I ‘follow’ you every day so feel like a stalker! I have Stage IV, too, but share your ‘fuck you, cancer’ attitude and feel like you’re my touchstone – (albeit one that’s a bit shit). I’ve given to A.N and love seeing that target tumble and rise, tumble and rise. Live long and prosper, my friend.

    Liked by 1 person

  4. Ian Whitlock says:

    Great to read another instalment. Yes, hating fellow ward-mates is a great game – one of the only games , I guess. I still remember a young fellow who repeatedly glared at me as he walked past my ward door when i was laid low with heart failure. It really was upsetting.
    Excellent that the chemo has not made you feel to poorly in itself. Similarly i didn’t feel unwell at the time when I was being seriously considered for a heart transplant. Also ate a lot of biscuits. What excellent things they are.
    Anyway good luck and keep us informed of progress.

    Liked by 1 person

  5. Keep your chin up John and Ella – you’re both doing astonishingly well in the circumstances and your writings and observations are very, very funny. I shall continue to watch and donate, occasionally.

    Like

  6. Amanda says:

    Have been waiting for the next installment, hoping that you are well enough to write. Here’s hoping the drugs will work.

    Like

  7. Bloody marvellous post, as usual. You’re a total stranger but I feel like I know you very well!

    Your post reminds me about my treatment – BEP (bleomycin, Etoposide, Cisplatin) for testicular cancer. I was on a ward though, so I shared a large room with approximately 23 other men who were all in various stages of dying, throwing up, being disagreeable and flirting with the nurses.
    That was apart from the ones who were flooding the shower room when they tried to have a shower with a cannula in and the pump outside (me), telling the nurses at 3am exactly what the next dose was because they usually had to triple check it (me again)and pleading with the nurses not to let the pump run dry because the cannula would clot and would have to be replaced (yes, you guessed it, me).

    It was a hell of an experience. I always meant to write while I was in but that was four years ago and anyway, I felt like shit all the time and I never got round to it. I’m glad you’re writing. Now hurry up and get better, and I’ll buy you a pint when you do (or any other time the opportunity arises!)

    By the way, I was told that the chemo was so toxic that if I spilt any wee (I was pissing in little cardboard bottles for the first week, and stacking them like milk bottles in a little plastic crate), or if I threw up, or I did anything that caused the drugs going in me to get out, any material they touched would be burnt and everything else would need a hazard team to sterilise it. I felt like a leper.

    Like

  8. Alison says:

    I had a hospital roommate who would argue with her doctor for a cigarette and then sneak out in the middle of the night to smoke anyway and come back in reeking.

    She looked wistfully one day at the bouquet of flowers a friend had brought me.

    Lilies last a long time. Good. I quietly got a nurse to bring me a left-behind bud vase–these were quite easy to find, just go to the nurses’ station–and I put one of my lilies in it for dear roommie to have right by her bedside.

    She sent it home with family. Said it smelled too much.

    Like

  9. BJ Wolf says:

    “apparently anyone who’ll take a doctor’s advice rather than self-medicating with cannabis oil is a shill for Big Pharma)” – the best thing ever written by someone with a life threatening illness about people who never have.

    Liked by 1 person

  10. Sophie says:

    Being somewhat cancery myself, I cannot, alas, donate bone marrow or other bodily fluids. I can, however, donate some cash so that’s what I just did. Hope chemo stays less side effecty than you imagined!

    Like

  11. Tim says:

    Another enjoyable column, pleanslty different to how the mail covers these type of stories…maybe add a link on your twitter page? I had to Google to find the blog

    Like

  12. Alicia says:

    Whew! Glad there wasn’t a quiz after this post. Keep up the great blogging! I hope that chemo continues to be fantastically boring.

    Like

  13. […] ***Previously on John vs. Cancer: after a week or two of hanging around in hospital waiting for something to happen, our heavily cannulated hero cracked on with a) his first and possibly only round of chemo and b) becoming a sort of social media mascot for lymphoma. All a bit odd. We rejoin him more or less as the last tube is disconnected.***   Towards the end of Chemo Round One, I began to run into problems. The classic side-effects – nausea and vomiting, ulcerated mouth, suddenly wanting to experience a list of incredibly trite activities – had entirely passed me by, but after a few days of concentrated intravenous poison my veins were in pretty poor shape. My chemo regime (much, much more on which in my last blog) required that I be fitted with two cannulae, one for drugs and one for saline, and although a clear cannula should be good for at least three days’ use (pre-chemo, mine were lasting nearly a week), by day three I was having at least one of them changed every day. I was also being bled every day, in whatever drug-free window the phlembotomist could find. Two or three needles per day may not sound like much, but when you’ve already got three burst veins and scarcely a platelet to call your own, it’s more than enough. […]

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  14. […] 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. […]

    Like

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