New haircut, new treatment, nutrition

 cancer  5 Responses »
Feb 042019
 
New haircut, appropriate to diagnosis

Sorry for the radio silence. You’d think that after several weeks of bouncing between three of the world’s top hospitals for various appointments I’d have more news, but you’d be surprised. Lots of information, plenty of progress, but not much to report. Such as it is, though…

Nutrition and evidence

When you get cancer you get a lot of unsolicited advice. I understand where it comes from – specifically from a place of love and a desire to support people. People have different approaches and love and kindness are always appreciated.

However.

There’s a lot of bad information out there, especially about cancer. My specialist oncologist nurse has a list of trusted sites (Macmillan, sarcoma.org.uk) which hold reliable information, but they are completely overwhelmed in volume and amplitude by the hordes of well-meaning people without an evidence base to back up what they’re saying. New haircut, new treatment, nutritionThere’s a lot of bad information out there, especially about cancer. My specialist oncologist nurse has a list of trusted sites (Macmillan, sarcoma.org.uk) which hold reliable information, but they are completely overwhelmed in volume and amplitude by the hordes of well-meaning people without an evidence base to back up what they’re saying.

A lot of this information is actually harmful. Dangerous. Hypotheses presented as fact that are in fact conjured up from a range of unproven, baseless earlier theories. Often some sort of science is behind them. The worst part is that they’re often buried in with some good advice, typically things like eating plenty of leafy greens, olive oil, brown rice, and following general nutritional guidelines. An example (I’m bloody well not going to link to any of this) might be a suggestion to take large supplements of turmeric, cannabinoids, vitamin c, or whatever. Another might be a suggestion to fast for 24 hours before and after a chemotherapy treatment.

No.

Chemotherapy is very hard on the body and your body needs fuel to help deal with it. They are literally pouring poison into your veins in the hope that it will kill cancer more than it kills you. Overdosing on anything, from turmeric to vitamin c can interfere with your body’s natural ability to absorb nutrients and block receptors. (we’re not talking about adding an extra teaspoon to your dal, we’re talking about supplements approaching a gram of turmeric several times a day)

And cancer is fucking terrifying. It’s a new growth, a mutated part of your own body that wants to eat the rest of your body. Dozens of doctors and specialists come along with treatments that make you feel awful and have side effects as long as your arm any one of which would give you pause if you weren’t potentially dying. All of this means your life becomes one big pile of uncertainty and you don’t feel in control.

The desire to feel in control is completely and utterly understandable.

Every person who gets cancer has to decide what, if any, treatment they will undertake. Some choose a naturopathic route and that works out OK for them. Some take the chemotherapy route and experience all the side effects and they die anyway.

I’ve considered the evidence and I’m going down the chemo route (with all the support, from the dieticians to the physiotherapists to the oncologists to the existentialist psychotherapist and more, that the NHS can and will give me.

So while I recognise that this route doesn’t work for everyone, I ask for any and all of you to respect the choices, however stupid and wrong you think they are, of those who have to make these choices and not foist your own values on them.

Status

Had a bit of a wobble today when I scratched my head and pulled out a pinch of hair. Realised it was time to take back control, and not in the Brexit blue passport sense. Bought a pair of shears and gave myself the lovely new haircut you see in the attached photo.

Have had first round of chemotherapy. I feel… pretty good, actually. Despite the hair. I’m due for the second round on Friday and sort of assumed that side effects from round one were over, hence the wobble. Getting a reasonable amount of exercise, going to work around 3 days a week for around 5 hours at a time (working from home otherwise). Nesta have been incredibly supportive, from moving me onto the investments team (with a lot of fascinating opportunities to work with some really good companies – a good follow-up from my BGV days). I still get tired but it’s almost like I haven’t got a fist-sized lump of mutated me trying to kill the rest of me. Almost.

So, overall, doing well, feeling good, getting stronger, working, and enjoying every sandwich.

How the Wasp Factory made me a writer

 books, Lessons Learned, Writing  2 Responses »
Apr 032013
 

(maybe not a very good one. I know how that sounds)

Some years ago I had a flatmate who had these books by Iain Banks on his bookshelf. He kept telling me I had to read The Bridge, which was his favourite book of all time, so I kept waiting for him to get it back from whoever he’d lent it to. Iain Banks is one of those names you see when browsing used bookshops – they’ve always got a few.

I got tired of waiting, and sat down with The Wasp Factory instead. Then I went out and bought The Bridge. Then scoured San Francisco’s used bookshops ’til I’d devoured Espedair Street, Complicity, The Crow Road, Walking on Glass.

I’d always been a reader, but there was something about this inventive mind that made me want to write. Not that I expected to create something of this quality. The books were astoundingly human: I read Espedair Street on holiday in London, forgoing the attractions of the city I’d flown 11 ½ hours to reach and just spent time reading in my friend Jane’s house in Brixton. My father loved Espedair Street, and it was not his sort of book at all – he was more of a Stranger in a Strange Land or Childhood’s End person. He read for ideas, not for style, catharsis, or any connection to human ideals, but even he was sucked in by the story of the rock star.

Banks never does anything the same way: his books are so different, showing such a breadth of imagination, wit, and gallows humour. When he’s had a flop of a book, it’s been because it’s simply good, and we’d come to expect brilliance out of each and every book of his.

A Glaswegian colleague of mine loaned me a copy of Raw Spirit, which is a brilliant piece of work; I’ve had the fortune to meet the commissioning editor of that piece from Hodder, who’s told me what a wonderful man Banks is. It’s also slightly less directly responsible for my channelling a significant portion of my earnings into the Scottish distillery industry.

I had the chance, very briefly, to meet the man, once, at Foyle’s on Charing Cross Road. He was doing a little talk and a signing for Stonemouth, yet another astonishing glimpse into the human soul.

And then there’s the Iain M. Banks stuff. I can’t even start to talk about the Culture. I don’t know where to begin. There’s amazing world building, in its proper place, as backdrop scenery. He took the most tired of genres – the space opera – and reinvented it to talk about politics, morality, experiments in civilisation – not to mention displaying a wicked and incisive sense of humour. He had to, of course, work in the top echelons of literary fiction, but also in genre as well.

It’s not bloody fair.

But still, reading his stuff made me want to be a writer.

And now he’s going to die. In a horrible way. I’ve seen people going of cancer of the liver & when cancer gets to the lymph nodes. It’s shit. It’s ugly and painful and it’s not bloody fair. So how does he go out? With humour. With sensitivity. With caring for his fans. With a specific call-out to the wonderful NHS that’s served him well – as they’d have served him if he were homeless and penniless, which is as it should be.

So thanks, Iain, for leaving a treasure trove of books behind for us to read at length and pleasure. Thanks for giving me the bug to want to get writing, to spend my evenings slaving over pen & paper or yet another keyboard. Thanks for being a brilliant human being, even – especially – in the face of incredibly good fortune and when the wheel’s turned against you.

It’s not fair, you going out this way, but that’s what we get, sometimes. Just life. And a little laughter.

(Update: It seems I’m not alone. Will Hill had similar, perhaps slightly more articulate, words here. Scott K. Andrews explains why he refuses to read The Bridge here. You can see what other folk are saying to Iain here.)