I wrote a post last year called Billy Don’t Be A Hero: The War On Cancer. Fred had been diagnosed with Leukaemia 6 weeks earlier and I meant every word – but maybe I didn’t. Maybe I wanted to but deep down, I thought that it just applied to the other kids. Not mine. Because although I hated it, he really was a fighter, and so was I. So we would get through this and I would carry on telling people not to talk about fighting.
If you’ve never met Fred, it’s difficult to describe his invincibility. He was never ill, he was never cold, he never seemed to get hurt and when he did he didn’t seem to mind. He was always looking to go higher, faster, 50% fearless and 50% utterly ridiculous. So cancer was not going to get the better of my boy and one day, he would run inspirational summer camps for children recovering from illness, and they would marvel at his physical strength.
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. The language used usually involves wars, battles, fighting, bravery. In many ways it’s odd. We never say a child lost their battle against an articulated lorry, but cancer it seems is up for the fight.
I look back now on the things that people said when he was diagnosed: that he was a fighter, that he was strong, that he was tough enough, that if any one could beat this then Fred could. People said these things out of love, and kindness and support. They said these things because they were desperate to be helpful, desperate to say something when things were unimaginable. Desperate to make things better.
Every experience is different, and some people do find that fighting talk helps, and there were certainly days when it did. All of these children are warriors and heroes and we need to celebrate that. Sometimes you do need to feel you have to fight to find the energy to get through the day. It gives you a power back when it feels like it’s slipping away.
There is a reason we don’t send children to war. If cancer is a battle, it is that one that nobody volunteered for, that no one understands and everyone would run away from if they could. It feels random and meaningless. To “fight cancer” is a massive generalisation – are we talking a scrap in a pub car park? a skirmish? whilst children are being sent into No Man’s Land with nothing but a bayonet and a tobacco tin for protection.
There aren’t any winners. It’s never over. Long after the end of treatment bells have been rung, the spoils of war can include amputations, long term health complications, PTSD and depression, not to mention the constant threat of the cancer returning. No, our children are not fighting cancer, they are the battleground. The cancer goes to war against the science: the researchers, consultants, nurses and the drugs. The only time I ever got even slightly snippy with our consultant was when she said Fred had failed on a course of treatment. I narrowed my eyes and used my best angry quiet voice to tell her that “No, Fred did not fail, the drugs failed”
I’m a lover not a fighter, and I’ve spent the last 14 years telling him not to fight. The problem with fighting is that it feels more about the 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. 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.
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. What counts is not the willingness to fight, but the willingness to stand, with both feet solidly planted, and look cancer in the eye.
The boy who never gave a fuck about stickers, and laughed in the face of health and safety, triumphed. His ‘fighting’ looked a lot like go-karting, and theme parks, and mini-golf and Halloween parties with friends. It looked like laughter, sadness, fear, joy and most of all love. That’s what keeps you going.
And then he died. To quote Michael Rosen in his simplest purity, “I loved him very very much but he died anyway.”
In reality, Fred didn’t really stand a chance. The type of leukaemia he had didn’t respond to chemotherapy and marched on relentlessly, like an unstoppable force.
It was not that he didn’t fight hard enough. It was not that he lacked strength of character, or courage. It wasn’t because we didn’t have enough faith in him.
He didn’t lose his battle, he was taken. He lost the life he was supposed to have. A life that was full of hope, and adventure. We lost our child, our beautiful, kind and gentle child.
And if there is a fight to be had, it is the fight to rebuild our life without him, to support his brother, now he has no one to fight with. It is the fight to do whatever we can to make sure other families do not have to endure the same.
We have set up Fred Bennett’s Don’t Look Down Fund to research into cures and kinder treatments for Acute Lymphoblastic Leukaemia. The name is in honour of his fearless, risk taking approach to his whole being, but also the way he lived with this illness, eyes forward, resolute and pure of heart.