Oligodendroglioma, Radiotherapy

Being brave

You’re so brave!

This is what people say to you when you’re going through something like this. Nah. It’s not bravery, it’s lack of choicery.  Life lobs these boulders in all of our paths, and you either climb over them or sit down and give up. No one makes it through unscathed, and we all tend to start clambering up that boulder, no matter how slippy, how difficult and how much we don’t want to. The only times I have been brave during this brain tumour palarver are when I’ve gone through with something I was terrified of – the biopsy and turning up to get the results. Even then, it only seems brave in retrospect.  My tool of choice in the climb is humour.  This Carrie Fisher quote recently popped up on Twitter and never has such a short phrase resonated so hard.

That’s not to say there aren’t other examples of Being Brave.

During my first meeting with Paula the Oncologist, I asked whether it would be OK to go on a ketogenic diet. This involves cutting out all sugar and virtually all carbohydrates except for leafy vegetables. It’s a diet made up of vegetables, meat, fish and some dairy.  No sweets, bread, pasta, potatoes, or even fruit.

Now, as any fule no, there is nothing like cancer to bring out the snake oil salesmen, and there seems to be thousands of people who cured their cancer by rubbing watermelon on their ankles, or never looking upwards or somesuch. If it was that simple, no one would have cancer and everyone would recover. However, there is increasing evidence that sugar is not good for any of us, and recent developments on the Warburg Effect suggest that cancer cells are reliant on sugar whereas normal cells can use sugar or ketones for energy. So the idea is you feed your normal cells and starve the cancers cells which supports your treatment.

It may be absolute bollocks, but it feels like doing something proactive for myself, rather than being a passive recipient of a load of treatment, and even if it isn’t helpful, if it’s not actively unhelpful, why not? The other benefit is that a ketogenic diet has long been used to treat epilepsy, and is known to reduce or even control seizures, so if all it does is reduce my chances of more seizures, then I’m in. It’s no bother to me, I’ve been keto on and off (mostly off) for the past 4 or 5 years, so I know that way of eating suits me.

The idea horrified my wonderful sister Frances, because she is a self confessed sugar addict. She is definitely Being Brave by joining me in giving up carbs (even cake!) and getting sponsored to do it, raising money for The Brain Tumour Charity in the process. She’s now at the stage of wanting to punch innocent puppies, so please sponsor her here: https://www.justgiving.com/fundraising/frances-singleton

Paula does not mind me going ketogenic at all, but doesn’t want to me to lose any weight in case my radiotherapy mask becomes too loose. Having done the ketogenic diet many times, I assure her there’s not much sodding chance of that. What we hadn’t bargained on was that the sheer amount of hair I have lost means that my head circumference is now a full 1.5 inches smaller than it was when the mask was made. The once super-tight mask is now more like a space helmet. As I’ve only got a few sessions left, we agree that I’ll just have to stay really still during zapping sessions.

My hair has been falling out steadily for two weeks. Fuck, it’s depressing. If, or more likely when, I have to do this again, I’ll just shave it all off beforehand and donate it to a wig making charity. The bald patch has grown from a palm sized amount on the right side to the whole of the top of my head except for a tiny bit at the widow’s peak, and most of the way down both sides and the back. The length of what’s left means wigs won’t fit properly, and the amount of baldness means headscarves and hats don’t fully cover it. Still desperate to try and have the best of both worlds, I call Jonny, my lovely, but ridiculously young hairdresser.

Me: Please can you sort it out Jonny? When it grows back, it’ll be a total mullet, like Billy Ray Cyrus. You’re probably too young to know who he is aren’t you?

Jonny: Chuh, I know who Miley Cyrus is, I’m not daft!

Me: No, not her, her dad.

Jonny: How do you know what her dad looks like?

Me: *old person’s sigh*

Lovely Jonny books me in to the beauty room so no one else in the salon will see my bald shame, and promises to help me make the most of what’s left. It’s a relatively successful attempt, but that evening, pretty much the rest of the widow’s peak goes. I now have actual male pattern baldness. The resemblance between me and my Grandad is unmistakeable. During the next day’s radiotherapy session, my favourite radiographer, Irish Anna With the Improbably Long Eyelashes plays music in to the room for me. The song is Valerie.

And I’ve missed your ginger hair
And the way you like to dress

It’s a Sign. I miss my (not very) ginger hair too. Have you ever tried hysterically cry-laughing while trying to remain absolutely still inside a radiotherapy mask that no longer fits? It’s quite tricky.

The time I never thought would come has arrived. I’m ready to Be Brave. It’s all got to go. Having no hair can only be better than having this pathetic patchwork of stringy bumfluff. So for the first time ever, I walk in to a barbershop and sit down on the queue bench. The barber’s at the end of our street and it’s kind of hipsterish. Everyone there has an artfully shaven head, carefully oiled bushy beard and a pair of sleeve tattoos. They all look at me, this middle aged woman with a woollen beanie and a mad look in her eye.  Valerie comes on the radio. Is it even possible for Signs to be delivered more Signily? A softly spoken hipster bear sits me in a seat and I ask him to shave off all my hair. There’s no beauty room here. All the men in the place (and it is only men apart from me) can see. He puts his hand on my shoulder, looks me in the eye via the mirror and says

It’s really brave of you to come in here and do this you know.

For once I agree. He gently shaves off my hair with the minimum of fuss, and when I try to pay, he refuses to take my money. He even tells me to pop in whenever it needs re-doing. It bears repeating; people are fucking wonderful.

Going full bald is both a relief and an excessively final way of cutting my nose off to spite my face.  There’s now no two ways about it. Headscarf, hat or wig, I now look like a cancer patient, and can’t pretend not to be one. I will try to be even more brave in a future post, and show you all the various looks I’m developing. (Spoiler: I’m veering closer to Pat Butcher with each day that passes).

I don’t like to talk too much about my family and how they’re coping with all of this. It isn’t just happening to me, it’s happening to all four of us, but they are all individuals, and much as I might like to talk more about them, I wouldn’t do it without their express permission.  Oversharing about myself is one thing, sharing details of their lives is another.  However, another person who is Being Brave is 9 year old L. She’s reading as I type this and has cleared it. She’s OK generally, but doesn’t like concrete reminders of my tumour. She doesn’t like the radiotherapy mask. It took some getting used to seeing my bald spots and then bald head. Last Friday, my appointment was changed to 7pm, so she and A came with me. Irish Anna With the Improbably Long Eyelashes and the other radiographer (who’s name I’ve shamefully forgotten) invited them in to have a look. L looked worried, but A held on to her, and they watched as I hopped on the bed, put on the swimming hat and then lay in to the mask.  I called to L to tell her I was comfortable in the mask. The radiographers talked A & L through the positioning process, showing them the lasers, and let them go to the control room, where they could see video of me from several angles, the live scan of my skull, how that was composited with the original MRI and watch the whole treatment session. I’m extraordinarily grateful to Anna and the other lady for demystifying the process for L (and kind of jealous, I wanna see the graphics and video!) I’m also so proud of L for being brave enough to be involved even though she didn’t want to at first. It has made her a lot more comfortable. She says she might even write a post for the blog.

Here’s to all of us Being Brave, whether scaling a once in a lifetime crag of a boulder, or just trying not to get worn down by constant cobbles.

5 thoughts on “Being brave”

  1. I came looking for your wonderful website (old customer) and found this. I don’t know what to say without sounding like a total arse. I’ve sat down and read your whole blog and am so moved and choked and humbled…. I want to say I’m sorry and you’re amazing and I’m thinking of you but it feels woefully inadequate. I’m a total stranger but you’ll be in my thoughts so much. All my love to you and your family. Please keep writing. I’ll be here. Anne xxx

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  2. Ruth, you are amazing! You`ve clearly inherited your father`s zany humour and your mothers brains! Being from Barrow I knew your grandparents of course. Maisie, like my mother were both nurses. I once gave a talk to the Retired NHS group. Afterwards, I realised that although your Gran and my mother were deep in conversation with each other, they were both talking about completely different things! I was told it was ever so… Say hello to your parents. They must be so proud. Jenx

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