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.

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13 thoughts on “John vs. Cancer #7: It’s a Kind of Magic

  1. Jools says:

    Good luck! They sound like good odds to me, though I know nothing about betting. I really, really hope it works and you get cured. x

    Like

  2. Gaby Charing says:

    Good luck, John. Rooting for you.

    Like

  3. Fran says:

    I wish I were as eloquent as you and Ella, you are inspirational in how you have both coped with this, wishing you all the luck in the world and a full and speedy recovery x

    Liked by 1 person

  4. Sue Hope says:

    Biology is amazing and the NHS even more so. Wishing you all the best for the next month.

    Liked by 1 person

  5. Ednablip says:

    Hope it works; you’re too interesting to leave us. I had a cushy cancer 17 yrs ago; my husband has just had his 4th skin cancer op. The very word covers such a wide spectrum: yours is A level stuff.

    Like

  6. Amanda says:

    Hope all goes well x

    Like

  7. Lynda Sorenson says:

    A: Given that my first and third doses of chemo damn near killed me, and necessitated the removal of some interior portions unrelated to my cancer I had before then considered essential, I opted not to do dose four.

    B: Bring lots of good books, hospital + neutropenia = no fun except that everyone wears masks.

    C: I went into the same investigative mode with radiation, having learned, by then, to trust but not too blindly.

    Break a leg!

    Like

  8. Sally says:

    It sounds like amazing magic to me John. I’ll be thinking of you on the 13th. All best wishes.

    Like

  9. Ruth Flavell says:

    Will be thinking of you and sending lots of positive thoughts.

    Like

  10. I have to say, I totally enjoy your email overviews of what’s going on in your life. I went through this process, stem cell treatment, with my sister 7 years ago. She was diagnosed with Multiple Myeloma – a five year life span possibility. I want you to know, she is now approaching her 7 year ‘rebirth’ (also on Friday the 13th!). She has more energy and spunk than I do, always on the go, looks great and always feeling pretty damned good too! So YES! All this new technology, chemicals, drugs, etc. can and do work! I believe faith, a positive attitude and outlook also have a whole lot to do with it! So keep on keeping on and I’ll be waiting for your next installment!

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  11. As you rightly say – a lot of this is about the crazily lethal / lifesaving drugs but a significant amount of what keeps you alive is the people working with and behind the chemotherapy. Those who research and develop it and those that administer it and mop up the side effects. The fact that this is free at the point of use and that you do not have a massive insurance bill to add to the list of potential woes is critical, as anyone who has urgently needed the services of the NHS will tell you. It is not perfect but this is a system that works and will continue to work unless politicians with unpleasant ulterior motives deliberately destroy it in order to implement a private system with impunity.

    Sorry to go all political on your ass – top quality blog as always and I am really keeping my fingers crossed for you. If you are looking for something safe and sterile to keep you occupied whilst totally neutropenic then consider a few tweets to Jeremy Hunt et al. I have no doubt that saving the NHS can be added to your extensive list of achievements(although I do understand that staying alive is likely at the top).

    Like

  12. 8ollie8 says:

    I’ve been reading your updates for a while and thinking of you, stranger. I will for sure be thinking of you on Friday.

    I did sign up with Anthony Nolan (after the 2nd or 3rd plug, because I’m not that good of a person) and wanted to thank you for nudging me in that direction. I’ve been scared to in the past because I’m not allowed to give blood, which feels like a personal failing, and I thought if I was rejected as a potential stem cell donor I would feel like I’ve failed harder. But I wasn’t rejected! I have a shiny card and the happy feeling that maybe one day I could help someone who needs it. So, sincerely, thank you. And I wish you all the very best.

    Like

  13. […] ***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.*** […]

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