Olivia Newton-John shares her views on cancer terminology. Photo / Getty Images
Comment:
There's one word Olivia Newton-John doesn't like using.
And she's not alone. Many patients, their families and doctors feel the same.
I too have struggled with my own, sometimes unconscious, use of the word.
In the cancer world, even saying struggled wouldn't be acceptable because the word everyone has a problem with is 'battle'.
I only just got into a discussion with a reader on Twitter about her issue with my use of battle the other day, and reading the latest on Newton-John's health, there it was reminding me again.
This reader had tagged me in an article posted by Cancer Institute NSW.
They shared their own guidelines on how to write about cancer, and an article from NBC News tweeted by a health professional.
The headline - John McCain did not 'lose' his battle with glioblastoma — because cancer is not a war - tells a story that many like Newton-John are sharing.
What do people impacted by cancer think about 'battle' language? We've developed guidelines to help everyone talk and write about cancer: https://t.co/4Bhlfkrv7O https://t.co/fAScS5PGfC
— Cancer Institute NSW (@cancerNSW) August 31, 2018
In September, Newton-John told Sunrise she preferred not to refer to her cancer as a "battle".
"I like to say 'win over' because battle sets up this inflammation and anger that you don't want, so I'm going to win over it again," she said.
Newton-John was talking about her third recurrence of the deadly disease, which started in her breast and is now in the base of her spine.
Despite rumours this week her health was deteriorating, the Grease star hit back sending a message for her fans that she is not on death's door.
The thing is, the rumours only incited the spread of the word battle.
Nearly every story - ours included - featured the word in the copy if not the headline.
And it's been the case for any star reported on lately - A Country Practice star Penny Cook's death (who I was messaged about) last week, Curb Your Enthusiasm Bob Einstein's death on Thursday, and Billy Connolly "battling" cancer and Parkinson's disease.
Well, Newton-John prefers to use different language.
In a sit-down interview with Australian Women's Weekly last year she pointed out she's not a cancer "survivor" – she's a cancer "thriver".
She also doesn't like the world cancer, or describing it as "my cancer".
"It's the cancer. You don't own it. I don't like it when they talk about fighting cancer because that sets up a war in your body, which can cause inflammation, and that is the very thing you're trying to settle down," she said.
"I use the words 'winning over' and 'living with' because there comes a point where you can't get rid of every cancer cell in your body. Everybody is dealing with them all the time. Some people don't even know they've got it. It's a normal part of the cycle. Cells are programmed to die. Cancer cells, too."
I can empathise with a person's personal view on the matter. Personally, I tend not to agree and, professionally it's even more difficult.
Had rumours this week turned out to be true, following the star's preferences, our story would have had to read something like: '...the cancer thriver did not win over the disease she was living with'.
But the problem I have with such a description is more personal. Having a mum who has faced similar problems Newton-John has - breast cancer that has spread - I can definitely say she isn't "living with the disease".
Sure, everyone is different, but it's a disease that's ultimately ruled the past 14 years of my mum's life.
It's stopped her from exercising, doing the things she loved and made her feel horribly ill with multiple side effects.
In fact, it's been one hell of a battle, and one that cost her her arm. Because in battles - or wars - there are serious injuries, if not fatalities.
And while readers might think I'm being dramatic because I'm a journalist who only "sensationalises" headlines to get attention, I believe my own experience makes my insight even more valuable.
Having been a health reporter for most of my career, my mum's story is also one of many I've covered with care and compassion.
Following Cancer Institute NSW's guidelines, people writing about the disease should say 'people with cancer' instead of 'cancer patients'.
I agree in that if a person isn't undergoing treatment, they are not a patient.
But the next section on 'battle language' is where things get trickier.
It's become a common way to write about the disease since President Richard Nixon declared "war on cancer" in 1971.
"However, cancer is not a win/lose situation. To imply there is a loser, or a fight to be won or lost, is not an accurate or fair analogy," the institute's guidelines say.
"Cancer is something people live with — deal with, manage, experience — and sometimes people die from the disease. Using 'battle' language to emphasise someone's experience with cancer can be misguiding and insensitive."
They share views from the New York Times where Dana Jennings wrote those words made her "cringe and bristle" and Michael O'Reilly in the Sydney Morning Heraldwho said he never would have called his sister a "loser".
"I would like to see no more talk of 'losing'," he says.
"We should rather remember that every day of life lived with cancer is a victory."
I too would never call my mum a loser. But I also wouldn't say every day is a victory.
Instead, I have great admiration for someone who bravely and courageously goes down with one hell of a fight.
The reader who messaged me said she prefers calling it a cancer journey.
My own use of the word journey has been ruined (I confess) by too many stars on The Bachelor and Bachelorette using that word to reference their quest for true love.
AND WHAT ABOUT THE EXPERTS?
Dr Darren Saunders wrote a piece for the ABC with the headline 'How should we talk about cancer?'.
The Sydney cancer biologist is often pulling up journalists on Twitter for their reporting on all kinds of health matters.
The question he included, which was posed by Erica Ruck, asked, "If I fell off a cliff, would you say I lost my battle with gravity?".
I would probably say you lost your balance, if that was what had happened.
Dr Saunders said we often "personify the disease as a cunning and relentless foe" when it's better described as a "blind, emotionless alien".
"We try to destroy or annihilate tumours, deploying weaponised molecules, smart bombs, and magic/silver bullets, all while trying to minimise collateral damage and measuring survival rates," he wrote.
"In a research context, this macho language of action can be a motivating, focusing influence.
"Maybe in ascribing bravery, we're projecting our own fear as a defence mechanism against grief."
Perhaps that is the case. And with so many people trying to find the right way to say things, let alone write them, it can be a confusing and daunting space to navigate.
The truth is, yes, there are people who are living long and happy lives who don't like reading about battles or being bombarded by cancer stories - and impeding deaths that aren't real.
And maybe if my mum was completely honest, she might not have been pleased when I told her I was going to write about this topic.
But the reality is when I asked her what she thought about the word she said, "It's a battle. It's a struggle. It's hard. I guess fighting cancer is a battle against the fear?".
As long as we figure out how to navigate the right language to use with our loved ones, who should tell us what's right for everyone?
I'm sure those close to Newton-John have taken on board what she prefers.
Still, it doesn't hurt to find more encouraging ways to write things, and there are many in the cute cartoons and drawings so many talented artists on Instagram share.
For video producer Briony Benjamin, who "just kicked cancer's butt", reframing things had been "incredibly helpful", she said when she shared this post from Mari Andrew.
View this post on InstagramA post shared by Briony B (@briony_benjamin) on
And hopefully we've all moved on from this cliche, in this tactful empathy artwork by Emily McDowell.
View this post on InstagramA post shared by Emily McDowell & Friends (@emilymcdowell_) on
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