How to: live when you’re dying
My friends probably know me as an over-sharer – if you’ve ever dated me they know all about that thing you like. (Hey, I liked it too). But writers communicate in metaphors. Fictionally. Generally, I’m pretty private about private things. But some things, I think, are important to just get out there.
So here are some facts.
You’re dying. We all are. Some of us sooner than others.
It has struck me that I want a record of this somewhere, not veiled in imagery or attempted technique. But also, I honestly believe that if we’d acted sooner, if I’d listened to my instinct, and pushed, things could be very different now. Something about telling people this seems important. I’m a writer. I’m not sure what other vehicles I have other than these words.
They gave us his birthday, which is buttercup and green and perfect in my memory, it involves cake and photographs and love. But the next day we got the news and I’ll remember how it rained the day I drove my mum to a hospital in a town that’s not home, wipers beating in the wet. The exact moment hearts broke – my brother’s cancer is terminal. Now then. We could wallow – he’s 36. he has no children. Yet! Yet! Because there was also supposed to be . . . more. We could clench our fists – fuck cancer. There are inspirational stories everywhere about such responses. These are, you know, proper nice, and cheer me, though not everyone laughs when their hair blows away in a gust of wind. Not everyone approaches such news with vim and vigour. It’s also important to acknowledge that, I think.
When someone you love is going through this, you will love more than you ever thought capable, and you will mourn more than you ever have. Your heart will break every day, for big and little reasons. Because it shouldn’t be them, should it? It could be you, you want it to be you, it would be better if it was, My brother is physics and I am art. His mind is big. Infinity is just a word to me, a concept. My brother can envision its sheer scale. His brain is always busy, it plays with the secrets of our universe. Crouches and picks them up, turns them over and analyses them like a geologist and asks for answers, finding some. There. My fiction is showing. But how, why, should a mind like that be stopped?
You remember how you always tagged along for bike rides as a kid. The annoying little sister. Fearless boys pelting down a hill, when this life was all before us. You’re still stuck at the top of the hill they’ve all coursed ddown. ‘Come on, Sarah!’ So you go. And god! It’s fast! You nearly come off more than once, everything juddering. But your brother is proud and so, then, are you.
But this isn’t a photograph album.
This is another thing that changes. Your roles and relationships. You’ll lose friends and gain them in surprising places. You know quietly that you’ll love those you gained forever. There will be no petty fall-outs. If you love someone at that moment, they might cease to matter. They might be great, they might not. It’s nobody’s fault. The loneliness of this will be awful, for everyone, because everyone is alone with their different perspective. so hey, it’s not a competition. Try and be lonely together. There will be these moments: You’re in a bar in Manchester looking, talking, drinking decaf green fucking tea (because it’s good against cancer) like a human being, saying all the right things, but your heart and head is settled alongside your brother. Willing him on. Be strong. Hear me. Live.
Okay. Less of that.
So what can you do? This is what we have done. Maybe it will help, I hope so.
Find what works for you.
Read
This book is wonderful.
(You want it?) Thought so.
The book talks about the importance of diet, emotional and psychological state. It’s backed up by research and personal experience. Oncologists (almost universally) say: eat loads of chocolate and cake. Yay. What fuckwits. (I get why, really). But we think, maybe not. Maybe sugar feeds cancer. It makes sense to me that if a diabetic should take care of their diet, so should someone with cancer. There are various ideas going around, but Steven does the alkaline diet. The idea being that your body’s PH levels need to be of the right balance. This website was helpful in finding out what levels various foods were. Lemons are alkaline – I know, shocking!
Indulgent-yet-truthful quotation: Only put off until tomorrow what you are willing to die have left undone (Pablo Picasso)
Reduce stress
If you hate your job, leave it
If you hate your wife, leave her
If you can’t pay your mortgage, go and live on a boat
(You get the picture…)
Take drugs?
There’s interesting research on the impact of cannabinoids on cancer (Cancer Research has quite an unbias perspective, surprisingly), a patient’s tolerance to the hideousness that is chemotherapy. The potential for an iron depression after hearing such news. As usual, as with the latest film, we are that little bit behind (some states in) America on this.
Around 2011, I realised quite how stressed my brother was. Constant redundancies, difficult home life, bad diet, no sleep. The Anti-Cancer book says something clever about how when cancer presents, it’s a warning. Your body doesn’t have any near its right conditions, so it goes and fucks about with everything instead. (It doesn’t say it quite like this). But really, what else is it supposed to do? In 2012 I was concerned about my brother’s weight loss. But he’d been dieting cos he was a chubby little bastard who liked creamy curry, crisps and coca cola (coca cola will kill you, stop it now!). My nan died of bowel cancer, fairly young (my mother’s current age), so we thought, well, there’s age on our side. Then there was the bloating, the pneumonia, constant sicknesses, the dog-tiredness. We wondered. It’s the job, the stress. The anaemia that had NO ANSWER from doctors for years. Tests and tests and tests and a shrug of the shoulders. Stop drinking coffee? I suggested. Coffee bloats me. Sage advice. Retrospect.
But that’s three years we had to play with. Three years of a life. Until, finally, a diagnosis, at stage 4 (that’s the shit one).
And yet…
Hope
There is an experiment, and it goes a little something like this: Apparently, where sick mice are given the hope of escape from a maze and healthy mice are given no hope, they give up. Have hope. Whether it’s in the diet you try, the new drug, the fact that Stanford university are doing superhuman things with stem cell research – see the maybe-wonder that is the anti-CD47 antibody , that is currently undergoing phase 1 trials – and hope with all your heart. Maybe even the fact that exercise is supposed to increase people’s chances by 50%. Take your damn steroids. Let people help. ‘People constantly surprise us.’ (- nice oncology nurse, Darlington).
Live
So everyday, I reckon, it’s important to do something that’s part of who you are. You’ll go through a weird evolution, your whole moral and emotional geography will change (It took my brother getting sick to realise I hadn’t quite grown up) and that’s weird. It takes time. Sometimes I’ve dithered days away, and sometimes I commit to writing. I went on holiday and did rude things in the sunshine. Because so what. (Oh, over-share.) I tried to get my brother to do things he loved – everyday, notice something beautiful, do what you’re good at, do what you enjoy. I think we should all do this more. People get knotted up in the net, so to speak.
You visit the past of the person who knows you best, who made you who you are (I would never have ridden down that hillside), contemplate the future without them, eat homegrown tomatoes, stroke the new neighbourhood cats, and enjoy sitting on a bench in the sunshine while everyone else is at work, talking with your brother about the book he’s reading that has cat aliens with three breasts.
Love
See above.
And so maybe, if you look after yourself – the right food, right happy-levels, right amount of lung pumping, you won’t need this how to. Hope not.
x
A-and finally. The financials and forums. These are useful websites – being sick is frigging expensive (I’ll try and build up a better list soon)
Macmillan are god. Seriously. They will help with financials, pain regulation, everything
Pips – Personal Independent Payments (if you can’t work/get about, you’re damn well entitled to stuff. Don’t be a Sindy and pretend you’re Totally Fine. Fill it in properly, worse case scenario) People with long-term illness or disability https://www.gov.uk/pip/overview
Travel – When registered as disabled, you can get a nifty rail card to come visit your sister more :) (1/3 off)
Choice – it’s the person with cancer’s choice what they talk about and when, whether it’s about how different supplements are supposed to be good, or how they want their final moments to be. That anti-cancer book is also useful in considering this, the importance of hope but also talking about how important it is to, potentially, accept. To talk about death with your loved ones.
beating bowel cancer has a bloody nice forum to help you.
Trials – because, just maybe http://www.cancerresearchuk.org/about-cancer/trials/
