Doing the Radiotherapy: An Unhelpful Guide

Ed, an old mate from advertising days called me up the other day to ask me what radiotherapy was like. I was on his very niche call list of ‘people I like who’ve had radiotherapy’ because he might have to face it himself soon. So, this is for Ed.

The first thing you learn before you start having radio, or any cancer treatment for that matter, is that everyone reacts differently and there’s no way of predicting how your body will respond. So, you’ll get a list of potential symptoms, which you may or may not get, and you’ll promptly disregard said list because you just assume that this is a list for everyone else and you, for some reason, are exempt. Probably because the list is ‘exaggerated’ or, more likely, you don’t want the symptoms.

And then you might find yourself actually quite liking the routine of radiotherapy, or at least coping better than you might imagine. You’ll have a block-booking of sessions, delivering a whopping dose over time, broken down into smaller hits your body can tolerate. You’ll trot in each day and leave and, for the most part, probably feel OK.

Personally, I quite liked radiotherapy. I liked the routine of going in every day, even though it was a different time most days and nearly an hour in to the hospital and an hour back. I took good coffee. Dressed nicely. Lippy on. Radio 4 in the car. Bought a crap magazine on the way in, got angry at the magazine on the way out for being crap. I had a pink ticket for free parking for the duration (which always made me feel like I’d got one over on the general population, one fleeting moment). I felt well. I had that feeling of doing well, marking them down day by day, conquering. I started to take personal credit for the radiotherapy machine blitzing the cancer cells and personal pride built daily. I bought myself little sweet treats from WHsmith on the way out. Often chocolate. Go me.  One more done. Little kick of the heels on the way out.

I liked the big radio machine thing. A-sexual, futuristic and bulbous-cute, and usually called something less friendly but reassuringly techy like Varian 6, it was a lot less intimidating than I thought it would be. Think baby of Starship Enterprise and Wall-E.

Invisible gamma rays blast invisible cancer cells, painlessly, noiselessly, quickly, just in the bits of you that need it, and off you trot again till the next dose (gallopy gallopy). So far as treatment goes surely it’s the kindest, the one that makes the most sense, none of this complete whole-body fuckery like chemo or hormone treatment.

There is that tits out business though. I arrive and I’m directed to a bit of wall in the radiotherapy room that has a modesty curtain to de-robe. I strip to the waist and hang my top and bra on the hook. I am given, for the first few sessions, basically a bit of kitchen roll to cover my boobs for the short walk (4 paces tops) from the shelter of the modesty curtain to the radiotherapy bench. From there, you hand the piece of kitchen roll back to the radiographer that gave it to you 4 paces previously, & lie down. He or she puts the kitchen roll in the bin. There comes a point where I don’t bother with the modesty curtain or the kitchen roll but it never stops feeling odd walking those 4 paces topless across the room and doing “Good Mornings” and ‘how was your weekends” . Just less absurd than going through the kitchen roll rigmarole.

Arms over head in the stirrups. boobs out. Your team need to line your body up to the lazer beams to make sure Varian 6 has been rigged up to your dimensions.  You’re not supposed to assist in any way so need to master the art of lying there like a lifeless naked cadaver whilst they inch you about. Your people have to get in nice and close here. Sometimes you can feel their breath on you. Sometimes you realise you haven’t shaved your pits or have forgotten to wear deodorant. Or they, evidently.

And then everyone evacuates the room to the loud beeps of the ‘last man out’ button ( “saaaaave yooourselves”), and you are left with your breathing and your thoughts. I kept it basic. Best not to think too much about what’s really happening.  What’s for lunch? My fingers have pins and needles. I need a wee.

And then on your last day, you might, for some unfathomable reason, which takes you completely by surprise, because obviously you’ve been doing  perfectly well, cry. Perhaps because you feel like these lovely amazing NHSers that you’ve got to know are like your saviours and you’ll never see them again, and you’ll make some joke to that effect, that you hope you don’t, see them again I mean, even as you’re saying it knowing full well it’s probably been said 1000 times before and everyone who says it thinks they’re really funny for saying it. But you can’t think of anything else to say because obviously it’s about more than that. Or you won’t. And then when you leave, you’ll either feel really up-beat and air-punchy, or you might just feel a bit flat and think, “right then”.

And then your skin will probably get worse, that’s a certainty, because that’s the one thing you DO remember the nurse saying, that it will get worse before it gets better.  It’ll either be awful, less than awful or maybe OK. You’ll either be a bit tired or absolutely shattered, maybe a bit in between, but most certainly occasionally wiped out and not quite your usual self, but no one can advise you which way it’ll go, you’ll just stumble over your own symptoms when they stop dead in front of you. And that will be annoying because you thought you’d got away with it and you wish you’d taken the nurse seriously or at least not chucked the bloody leaflet in the bin.

But one way or another you’ll come out the other side of it, and after a while, realise that what just happened feels bigger now than it did then and you’ll think, “well, that was alright wasn’t it? We did it, my body and I”.

And you’ll feel quite proud of yourself. Which you should.

And that’s radiotherapy. Well, it’s how it was for me which means it won’t be like that for you. And it’s quite boob specific, so probably not that helpful, given you don’t have breast cancer. But otherwise, hope that helps a bit Ed.

Good luck mate,

Shiv x

I’ve Got Cancer, And Every Reason To Be Glad.

I’ve been wanging on about the Breast surgery for a while –  it’s time to talk about the cancer bit of my Breast Cancer.

This week, my surgeon confirmed that a bit of cancer was found in one of the sentinel lymph nodes that was removed at the time of my mastectomy surgery. I was told that I’ll definitely have radiotherapy, and chemotherapy is highly likely. I left that meeting on cloud nine. Despite the fact that my cancer has spread from its original home in the duct, to my breast tissue (making it ‘invasive’), and thence to a lymph node,  I am still at the ‘curable’ end of the scale. It’s all relative you see. I’m not just looking on the bright side here – there’s no forced positivity when you come out of an appointment and know your life isn’t hanging by a thread.

I had “the cancer fear” much like anyone else. But once you’ve GOT the cancer, the fear scale shifts. All cancer is bad. But there’s bad cancer, and there’s really fucking bad cancer and all the bits in between really matter.

It’s grotesquely over simplified, probably highly offensive, and almost certainly inaccurate, but this is how I understood how to position my own cancer before going into the meeting.

At each point of not-knowing, early on in the process of diagnosis, when I  knew I had “something’ but I didn’t know what the something was yet in wait of the tumour biopsy results, and then again waiting for lymph node biopsies,  I had moments where I mentally placed myself up and down this scale, dialling the fear-factor up and down accordingly. On the left, (American accent) “I can do this. I am going to nail this fucking fucker”. To the right, “Oh fuck. I’m fucked.  Completely and utterly fucked” (definitely a British accent. Probably northern). Squaring up to face death. Most of this happened in my mind , and only fleetingly. I was trying not to think, you see, dealing only with the information in front of me, but the thinking was happening without me even thinking I was thinking it. Damn brain.

Following my last meeting with the surgeon, as of Wednesday the 3rd of April 2019, in spite of this early spread, I am still firmly down at the left hand side of that shitty cancer spectrum.  I have a fairly common cancer, a treatable one, and It’s only been found in one lymph node and that’s now out. The working assumption is that surgery has nailed it, and radio and maybe chemo, plus further hormone treatment,  will do their magic to blitz anything else sinister lurking about and prevent a recurrence (with the understanding that treatment does not come with guarantees). It may not seem like it, but this IS cause for celebration. So many people aren’t this lucky at this moment. Some people, with very few symptoms, get terminal off the bat.

And there’s more.  The gladness comes from something much bigger than “shit but treatable”. My friend Emma pointed me in the direction of an article by George Monbiot, columnist for the guardian, who last year wrote about his prostate cancer.

In his own reflections on being grateful for his diagnosis, Monbiot goes wider in his assessment and creates his own scale – The Shitstorm scale. The Shitstorm Scale doesn’t just consider what might have been had the cancer not been caught early, but also any number of other tragedies and life disasters. It also considers within it other life circumstances to assess his position on the scale, and by his own calculation he’s a 2/10 as opposed to a 7/10, the latter being where he’d be placed on the Prostate cancer scale. Now that’s positivity for you.

My wider circumstances aren’t dissimilar to his; I have the NHS. I have a roof over my head. The love of a bloody good husband. My daughters. Family, here and abroad. A network of people – an extended ‘family’ of friends, neighbours, even acquaintances who hold us aloft, champion us, send us good vibe texts, hug emojis and playlists, and leave Shepherd’s Pie on the doorstep. And a rocking therapist. Helps.

Like George, when I look at my cancer for what it is, and in the context of a Big Life around it, I am one of the lucky ones.

Monbiot also writes about not letting fear rule your life

“There are, I believe, three steps to overcoming fear: name it, normalise it, socialise it. For too long, cancer has been locked in the drawer labelled Things We Don’t Talk About. When we call it the Big C, it becomes, as the term suggests, not smaller, but larger in our minds. He Who Must Not Be Named is diminished by being identified, and diminished further when he becomes a topic of daily conversation.”

George Monbiot

Making ‘cancer chat’ a daily reality through social media and this blog has helped me enormously.  It’s important we all talk about it. Not in hushed tones. Not with pity. Not with fear-faces. But just for what it is. Something that needs to be faced, my new reality, for the time being at least, and yours in part as someone who might know me. Bring it into the light and trust me when I say there is a hell of a lot to be glad about right now, and a bloody good life to be lived as I move through treatment. So let’s just crack on shall we?

{With thanks to George too, for unwittingly helping me to crack the title of this post. I totally remixed you Monbiot}