I’d used the lingo many times, openly, in front of my then, eight-year-old little girl who has had two brain tumours.
“Yeah, she’s a fighter,” I’d say when my words run out at the school gates. “She’s still battling…” or, how about this, “We’re going to win this darling, keep up the fight!”
It’s what everyone says when they talk about cancer, the enemy to be overcome – it’s the jargon, it’s THE thing to say.
Last year, three years into our own ‘battle’ I began to see that it’s not, or at least, I don’t think it should be.
After finally reaching some stabilisation after the catastrophic fallout from her first tumour, my daughter’s tumour grew back silently last year. She had endured two years of tremendous bodily and emotional torment as a result of her first tumour resection, life certainly felt like a battleground. It was a battle to keep her in school for the day, a battle to get through to meals because her brain injury made her hungry all the time. It was a battle to keep her awake because she was so exhausted and it was a battle to get her back to sleep at 4am because her circadian rhythm was wrecked. It was a battle to get her to push through pain with every step just because I needed to go to Woolworths. Her body was morbidly obese, pained and pushed to the very limit. Life was very, very hard.
But this time, when the tumour grew back I witnessed how wrong it was for my little girl to feel that her body was harbouring an enemy that put her under constant threat, an invisible enemy that she was obliged to fight – and my whole outlook on how we use language to help children cope with serious medical conditions became radically transformed in an instant; and as cliché as it may sound, I learnt to teach her about love, not hate.
This is what happened:
She is crying, it’s not time for morning tea, but she wants morning tea. Her tummy is telling her it’s hungry even though the clock says, No! Not yet!
My heart has been shattered so many times over the last two years, I don’t think it will ever go back together again. Yet it shatters one more time and I feel desolate loneliness as I stroke her forehead, her frustrated sobs filling my ears as we sit on the couch, hunger consumes her.
“It’s not your fault,” I murmur automatically, “It’s your condition, because of your tumour.”
Listen: How Samuel Johnson dealt with his sister Connie’s cancer.
She nods miserably, she knows this.
“It’s NOT your fault.”
Then the world stops spinning because for the first time, she screams those words that will change everything:
“I WISH I DIDN’T HAVE A BRAIN TUMOUR!”
Her voice is raw, coming from a dark place where shocking memories are stored but never accessed; it is frightening to hear it.
Rationally I think, but of course she wishes she doesn’t have a brain tumour but then I see the picture in pristine clarity, I can’t believe I haven’t thought of this before. She does have a brain tumour and there is a chance she could get more regrowths over the period of her life time – even if she doesn’t, she is still left with the body she now has as a result of her first, tennis-ball-sized growth. For the time being at least, this is life as we know it.