John vs. Cancer #6: Hitting The Wall

***Previously on John vs. Cancer: Having manfully sucked up his first dose of chemo through rapidly disintegrating forearms, our hero took possession of a bicep-mounted catheter to ease the trauma of future treatments, should there be any. He’s now… now… oh god, there’s far too much to sum up. Just give up on this bit and scroll down to the meat. Hasn’t Twitter taught you to skim read?***

Yesterday, my friend Clara told me something vaguely troubling: I haven’t updated this blog in so long that some of her friends, who know we’re acquainted in real life, have genuinely asked her whether or not I’m dead. As ‘get on and write a blog’ guilt trips go, this is pretty much the daddy.

I’d like to take this opportunity to a) confirm my continuing commitment to being alive and b) explain, if not entirely excuse, my absence. I haven’t published anything on here for more than a month, and the last blog deals with events that took place on or around August 10th, so John vs. Cancer is now trailing at least two months behind real life.

Two months ago, we still didn’t know if the first round of chemo had had an effect, and hence weren’t sure if I’d be going back into hospital for round two or going home to demolish as much of my wine rack as possible before I became too sickly and skeletal to lift a glass. I had recently been released from hospital, just four days after finishing said first round, and was hoping against hope that I’d manage to stay at home until my birthday without being recalled to the ward with neutropenic sepsis (infections prompted by a pitiful white count). I was thinking about getting my head shaved. Everything was quite exciting, and quite scary, and very much all to play for.

Since then, my life has been very boring. I don’t mean that nothing good has happened – or, for that matter, nothing bad – or that I’ve had nothing at all to write about, or that I’ve been too ill to write. I haven’t been ill at all, with the exception of a mercifully brief flirtation with anaemia and, obviously, the continuing presence of the high-grade lymphoma that may yet pursue me back to the ward, then to an even cleaner and shinier ward, and then to a little vase or a Tupperware or whatever Ella has to hand for my ashes. (My money’s actually on a Kilner jar, assuming she can bear to part with one of her bloody speciality flours.)

Plenty of good things have happened – both of our birthdays, a dear pal and my sister completing marathons for Anthony Nolan, being given a sword and immortalised in cocktail form and generally allowed to amuse myself as I like. Medically interesting things have happened to and around me, from the fun and frolics of last week’s stem cell harvest (more on which in a future blog) to the plodding tedium of another blood sugar balls-up. The first round of chemotherapy turned out to have had an “immediate and profound” effect – hurrah! – so I had two more rounds in just under a calendar month, before being discharged in late September to spend a month mostly at home.

In preparation for said harvest, I spent the first thirteen days of my time at home religiously filling myself with something called Granulocyte-colony stimulating factor, which comes in a tiny vial and has to be rehydrated with saline and then injected into the stomach or the top of the thigh. In happier times I’d have got fifteen hundred words out of that little adventure alone. Needles! Drugs! Blood all up my t-shirt! I’ve got a secure box for used sharps in my living room, for fuck’s sake. It was just like Trainspotting, if Rents and company had really cared about the safety of their bin men.

Anyhow, all this gay talk of drugs and ashes has distracted me from my point, which is to spend at least a thousand words sulking. You see, it turns out that the worst thing about cancer, the thing that can completely put the kibosh on your hitherto-successful blog and determined fundraising efforts, is not ‘it might kill you’. It’s ‘it gets in the fucking way’. I absolutely cannot tell you how sick I am of being in this flat, surrounded by things I love and never used to get enough time with – books, Ella, the classic board game ‘Kingmaker’ – and just wanting to be doing. Just out in the world, in the office or having a wander or whatever, without having to check that the walk’s manageable and I can get a cab if I need to and I’m not going to miss my evening pills. I want to see friends and not say a word about how I am or how we’re coping or when I’m going back into hospital. I do not want, ever again, to explain how a stem cell transplant works.

With no disrespect at all intended to the many brilliant people who work there, I don’t want to spend another minute of my life at Barts. I don’t want to go back to the lovely, welcoming ward where I spent my first and second rounds of chemo, or the slightly less convivial ward where I moped my way through round three (that was when I went a bit anaemic, and refused visitors, and generally started to work myself up into the filthy mood that I’ve been in for the last three weeks). I don’t want to have to tell another Uber driver that if you turn down Little Britain just as you come off the roundabout by the Museum of London, you can avoid the inevitable traffic jam in the one-way system by St Paul’s station, and I especially don’t want to have to ignore any more fucking strangers who feel entitled to chide me on Twitter for using Uber rather than a black cab. I do not want, really, to be on Twitter at all, because I feel guilty for not replying to well-wishers or drumming up funding or having anything new and witty to say about this incredibly boring process. It’s disproportionately hard to simulate good cheer in 140 characters, and the last thing I want is to stealth-bomb seven thousand innocent timelines with woe-is-meing when they came for light-hearted cancer commentary. (I don’t mind woe-is-meing on here, because you have to go out of your way to read it.)

I want to be able to look in the mirror without being reminded that, following the brief but cherished weight loss that accompanied my first round of chemo, I’m now fat again thanks to a combination of steroids, blood sugar medication, no energy for exercise and a disinclination, given that I can’t do anything else fun, to eat very sensibly. I’m also mostly bald, which seemed like a good idea at the time – get the jump on cancer, make it my decision and so on – but, since my hair hasn’t really fallen out and grows very quickly, has just become a way to spend £16 per fortnight on emphasising the fact that I look like a crooked nightclub owner from an ITV drama set in the North, all ill-fitting suits and cracking walnuts in one meaty fist. For the absolute avoidance of doubt, I do not want to be fat or bald. They are rubbish adjectives. At least ‘dead’ has some élan.

I really thought losing my hair was a good plan – preempting the inevitable in a stylish and controlled way. The idea was that I’d shave my head, what little grew back would fall straight out again, and I’d be a cueball for the duration; in fact, I feel even less in control of my body now that it demands twice-monthly visits to the barber. And at every point in my skinhead-stubble-buzzcut-skinhead cycle, I now look like someone who might actually punch you, although probably only once or twice before getting puffed out and having to have a sit down. (I’ve never made a habit of hitting people, although I used to do a nice line in punching walls when I was a furious youth. You can, perhaps, imagine how badly suited I was to furious-youthdom if I tell you that on several occasions in my first year of uni, I punched walls with such force that I snapped the horrifically naff coconut-shell rings I insisted on buying from Camden market. The only reason I haven’t revived this habit is that we live in a jerry-built flat with walls made of plasterboard and blind hope.) I am extremely bored of going to the barber and, every time my normal chap isn’t free, having to tell a new razor-wielding Turkish bloke why I want a haircut that patently doesn’t suit me. I literally can’t get my hair cut without having to talk about fucking lymphoma. It is so, so dull.

This is the thing nobody warns you about with cancer: you will spend so long being the subject of almost every conversation, explaining your history and worrying about your blood and looking at your results and thinking about your chances and just going ON AND ON, that eventually you just get totally, irredeemably sick of yourself. I don’t especially wish I wasn’t ill, because I’m pretty sure I’m going to get better and it seems a shame to wish away non-fatal learning experiences. But I would fucking love a break from being me. I’d even be happy to take a Being John Malkovich-style holiday in another cancer patient’s head, because at least there’d be some variety – a different strain, an alternative chemo cycle, maybe even a proper prognosis! More importantly, it would offer a fleeting change from just being stuck in here, in this traitorous body, gradually becoming so fucking bored that I convince myself nobody wants to read my blogs at all. After all, what could I write about? I don’t do anything. And that, not the fucking lymphoma, is what feels like it’s killing me.

***Next time on John vs. Cancer: hopefully, now he’s got all that out of his system, something chirpy about stem cell transplants. Of course he doesn’t mind telling you what they are. Glad to.***
 
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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21 thoughts on “John vs. Cancer #6: Hitting The Wall

  1. teabush says:

    From one equally bored and fed up of talking about it cancer patient, you have all my sympathies. I am now craving some really bad food and am off to make a blackberry sponge and custard. Stick that up your catheter, cancer!

    Like

  2. Hanne says:

    £16?! 16?! Obviously you may want to pay that money for the chance to get out of said flat but if not, buy yourself some clippers! I’ve been cutting OH’s hair for 9 years in this fashio!

    Like

  3. Towcho says:

    Thank you, we’ll take it, all the ranting and raving, that’s what we are here for.

    Like

  4. MrsGooose says:

    John, one of our family sayings is ‘better out than in’.

    Like

  5. Jools says:

    Know the feeling well! My Twitter feed is mainly stuff I retweet, simply because I have very little to talk about. I spend my days on the sofa. When I had my hospital appointment last week, it was the first time I’d left the house in two weeks.

    Having cancer is very frustrating. If the cancer itself is behaving, the side effects cause problems. Every new twinge of pain is analysed. You go to bed and wonder if you’ll wake up in the morning. The list goes on.

    Thanks for the update. I had noticed that you hadn’t tweeted much recently, but figured that you weren’t feeling up to it.

    Liked by 1 person

  6. Ruth Flavell says:

    Thank you so much for sending me this.

    Like

  7. Alicia says:

    Good to hear John. Was thinking of you, how did you know? Right, the whole cancer thing does get tired after a while. When my hair was growing back and still insanely short people didn’t always recognize me and I thought “oh good, I don’t have to have That conversation”. For the cancer patients who might not be able or willing to shine a light on it so superbly the way you do, keep these coming!

    Liked by 2 people

  8. D P says:

    I was worried too! I’ll have to learn how to read Twitter.

    your rants ARE interesting, and still very funny. I admire your talent.

    so very glad that you feel more like you will overcome this rotten thing that so many people have. In my youth I hardly came across anyone who got it. It’s now moving towards 50% of the population will get it at some time.

    Funny, I just wish someone WOULD ask about my cancer, but noone does. It doesn’t help that my mum doesn’t even know – she hasn’t cottoned on that I have so many hospital appointments! But as I don’t need Chemo so far (thank goodness), nothing shows. I look the same. But I am left with the dark cloud over my head – “you won’t make the 5 year survival”. Being optimistic I’ve got 3.5 left to enjoy (assuming I make 4.5 years in total, well. that’s not 5 is it?) I was even in a play last week and I could remember my lines, giggled hysterically a lot though, when others forgot theirs.

    continued good health to you, and keep keeping us all amused please on your fascinating journey.

    I’m too old to give bone marrow and don’t know if they will now want my blood, but I am actually going to find out this week I promise xx

    Like

  9. Jessica Elwes says:

    So glad to read this and know you are still with us and getting better – do keep up the blogs.
    Best wishes.

    Like

  10. karmel80 says:

    Hip Hip Hurrahh! I’ve missed the last few instalments of John vs. Cancer; I had halfway forgotten about you. And then suddenly found your comments on something else on Twitter.

    Please do keep written. You are very funny and entertaining to read. So if cancer is boring you feel free to branch out a little.

    I’ll try to keep better tabs on you from now on.

    Like

  11. Lynda Sorenson says:

    I can tell you that a year later, I’m still f’ing tired of talking about the Cancer as I was tired of living the Cancer life. I should be done with it, no? But it explains so much of where and who I am now. And I loved my bald head! It felt so good. As soon as bald heads for women come into style, I’m rocking it.

    Who am I kidding? No I’m not. I don’t ever want to go back there.

    Like

  12. Alison says:

    And even yet you make it funny, which is a very needed thing. Thank you for that. Your words get out and about and nothing can stop that part of you from having a good wandering and looking around at things.

    Like

  13. In common with most of the comments here I can empathise with your hitting the wall experience – although indirectly. I get bored of staying chipper when talking about mum’s dementia with family and friends. Although their questions are all very well-intentioned there is a part of me that does not want to be defined by association with a disease. Trying to be funny and lighthearted about it in the blog when actually I just want to rant about the injustice is sometimes hard although probably a good discipline. I have a draft ‘very angry’ blog post filed away that I add to now and again. I know it will not be an easy read but one day I will post it because sometimes people need to understand the crappy days too. And rest assured, even when you are not trying to be a comedic genius your posts are still a joy to read. I, like others, had been missing them immensely.

    Like

  14. Steph Wilson says:

    I too had started to worry. To the extent that I went to the effort of searching you out on Twitter (not a particularly arduous task to be fair, but I bloody hate it) and was relieved to find you alive and tweeting.

    Alas, I like your grumpy demeanour. It’s a good sign, though vile to live with I daresay.

    Glad you’re back…keep blogging my friend and bugger the lymphoma!!!

    Like

  15. tangentiallyTJ says:

    Another well-written blog post. I love your writing; honestly, I’d read your blog, whatever the topic. Mastery of the language, humor (American spelling), and a deep honesty that I admire, all combine to draw me in.

    I follow you on Twitter, too, by the way, but not so you can amuse me with happy Cancer Mascot updates. I follow you and Ella because I care what happens to you. I’m invested in you both, because you are both pretty damned amazing and together you’re a marvel.

    Go ahead and be angry and cranky and curmudgeonly if you want. Say you feel trapped when you’re trapped. Everyone else does, and cancer doesn’t come with cheeriness as an attached superpower.

    Just please, don’t ask for pictures of kittens to brighten your day, or I’ll really start to worry about the state of your health.

    And please, don’t stop writing and publishing what you write. I look forward to it, not for the topic, but for the quality of your work.

    Like

  16. Abriel says:

    John thanks for the update. Nothing exciting to add really but all the best you grumpy fella, good luck with all life throws at you and thanks for your (very funny) rants xx

    Like

  17. Sophie says:

    I know where you’re coming from and it’a why I stopped updating my cancer blog. “Yep, I still have it. No, it’s not dangerously fatal yet. Yep, still having the same old scans I excitedly described a year ago and yep, still convinced every headache or pain will be a symptom of metastasis even though it never is”.

    I never imagined cancer could be this dull. It became almost embarrassing to have no exciting news to tell people when they asked.

    Happily they all lost interest when I managed to get back to my full-time job of making TV and now I occasionally find myself wishing it WOULD metastasise* just so I’d have an excuse not to work another 85-hour fucking week.

    I think cancer patients are never going to be happy with the status quo but boredom and paranoia are better than dead.

    *just a little metastasis; not enough to take all my health points, just enough that people pity me, and let me not work if I don’t want to, and bring me hot food coz I can’t be arsed to cook.

    Liked by 1 person

  18. Amanda Macczak says:

    Your blog is fantastic. Reading it is like someone read my mind and then written the publishable bits down!

    I got the all clear in April after enduring almost year of people telling me how amazingly strong/brave i was, and that i was a warrior. Yuk yuk yuk. Chemo made me vomit twice in 8 months. No amount of ondansetron helped the nausea that well meaning friends and family induced!

    Keep up the magnificent work!

    Like

  19. Ash says:

    Thanks for the update!

    Like

  20. Linzy says:

    Reading Christopher Hitchens’ Mortality about his battle with cancer, the line I found most memorable was “I don’t have a body, I am a body” – which is why illness can be both tedious and vitally important. Not much may be happening, but it’s happening (or not) to the most important thing you have.

    Looking forward to many more posts.

    Like

  21. […] ***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.*** […]

    Like

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