How we talk about cancer matters. It’s easy to worry about saying the right thing, the wrong thing, and often people end up saying nothing at all, which is the worst of all. So, given September is Childhood Cancer Awareness Month, it seems a good time to get it all out.
The words that readily come to mind are usually around war, battles and fights. Children are warriors, fighters, heroes and it gives everyone some comfort to talk about their strength and courage.
However, recent studies show that using language connected to wars, battles, fights don’t do much good. They are scary, stop people getting symptoms investigated, and have a negative impact on those already diagnosed – and yet is prevails.
I’ve likened it to war in my last post, and in many ways that’s how it feels. Not the Mark Francois Dunkirk Spirit “Don’t like it up ‘em” kind of war, but the horrifying, frightening perpetual assault. Not so much a battle, as running for your life whilst being shot at.
We were halfway through watching Catch 22 when Fred was diagnosed. If cancer is a war, then that’s the kind of war it is – one that nobody volunteered for, that no one understands and everyone would run away from if they could. It feels random and meaningless.
There’s a reason we don’t send children to war. This is too much to put on their shoulders. People are desperate to say positive things to make everyone feel better; “Don’t worry, they’re strong”, “they’re a fighter”, “they’ll beat this”. That’s easier than accepting that all the fighting in the world at the end of the day, doesn’t make a blind bit of difference to the outcome. Only science can do that. And medical teams. And luck.
To “fight cancer” is a massive generalisation. Some are having the equivalent of a scrap in a pub car park, whilst some are being sent into No Man’s Land with nothing but a bayonet and a tobacco tin for protection. Whilst some will win that fight, others will lose – 1 in 5 to be precise.
Loser is not a word that belongs here. It’s a word for cheeky children to use when they beat you Scrabble, but not for this. They don’t ‘lose’ because they weren’t strong enough, or brave enough or they didn’t fight hard enough. They weren’t defeated. There aren’t really any winners either. Long after the bells have been rung, the spoils of war can include long term health complications, PTSD and depression.
The focus on war puts undue prominence on anger, and the hellscape that comes with it. Sure, there’s a lot of that, there’s much more besides. Nobody can fight all the time, and fighting doesn’t always look like war. Quite often, it looks like laughter, sadness, fear, joy and most of all love. That’s what will get everyone through this. The days, or hours, or minutes you want to lie under a blanket are as essential as the battle cries. The trouble is, that focussing on the fight, can make you feel like somehow, you’re letting the side down, or sabotaging recovery.
So why do these words still march on?
Sometimes all the war talks really helps. All of these children are warriors and heroes and celebrating that is all we have. Courage and strength might not be able to get rid of the cancer, but it will get you through the day. It gives you a power back when it feels like it’s slipping away. Fred has always been invincible and, whilst cancer may beg to differ, his ability to stare it in the face has never made me prouder. The boy who never gave a fuck about stickers, and laughed in the face of health and safety, has triumphed, but I’d give anything for it not to have been like this.
Images are stronger than words, and visualising children in this way provides a kind of strength of its own. Stranger Things Series 3 felt strangely cathartic, watching a bunch of kids try to hold back a shapeless, all consuming deadly creature long enough for the grown ups to work out what to do. That’s pretty much where we are.
The victory is not in fighting, but in enduring, showing up every day knowing that you have no choice. The courage is not in fighting cancer but in living with it. The Beads of Courage is a wonderful organisation that doesn’t give rewards for ‘beating cancer’ but marks every needle, test, tablet, anaesthetic, operation and transfusion. It’s a visual representation of everything that has been withstood.
So if battles don’t work, what should we be talking about? Some people like to use ‘journey’ and see this as a more positive image. I can’t really buy into this either. Noone’s buying a ticket here and Reese Witherspoon has yet to show up with her walking boots. It seems a cruel description as we watch our world become measurably smaller. There are no sweeping vistas, or impressive canyons, just hospital curtains and Netflix. Journey my arse, unless it’s a really bad day on the Piccadilly Line. Maybe I’ll feel differently in a few weeks time, maybe I’m just a toddler refusing to get in the car. Who knows?
Maybe some of the comfort for battles and journeys is that it separates it from the everyday, it lends an ‘otherness’ to it that offers everyone else protection. But if it’s not a war, or a journey, then I guess it’s just our life now. It’s harder than some people’s admittedly, but still full of the moments of joy, hilarity, irritation and ordinariness. The cat still needs taking to the vet and the car still needs an MOT and I still need to remember where I’ve put the PE kit.
In short, I don’t really have an answer. I love metaphor as much as the next person but it is what it is. We can talk about it in anyway that feels right today, that helps in this minute and which may be completely in appropriate tomorrow.
In the words of Frank Sinatra “Basically, I’m for anything that gets you through the night“
If you want to support Child Cancer Awareness Month, you can here. Buy a ribbon, sell some ribbons or make a donation. #BeBoldGoGold #CCAM #ChildhoodCancerAwarenessMonth
If you want to find out more about Beads Of Courage in the UK, take a look here