The cancer experience is not always universal

 

When I was having cancer treatment I went through it around the same time as a famous (in the UK and Australia) person: singer and actress Kylie Minogue. Like me, Kylie was a relatively young cancer patient.

No person should be under a microscope during such a time. Every day there would be a new story about how great she looked, or how ill she looked. They could never make up their minds.

The fact that no editors at any of the trashy rags “reporting” on her story gave her an ounce of grace disturbed me. Why did getting cancer make it open season on her?

I found the endless scrutiny of her physical appearance upsetting, and yet I could not help but internalize some of it as my own appearance had been greatly impacted by chemo. Kylie gained a little weight, but she quickly went back to looking like herself, with her post chemo pixie cut giving her an elfin glow.

I felt unrecognizable post chemo. I gained almost thirty pounds with the chemo steroids. My chemo moon face did not look adorable with no or short hair.

I couldn’t help but wonder if the press would have been so kind to Kylie if she had not gone back to looking attractive relatively quickly.

Many people told me not to worry about how I looked, that being alive was the main thing. But that is a hard pill to swallow when you are a young woman with cancer. My new scars didn’t help my self confidence, either.

This week two public figures have been in the news regarding their cancer. First we had supermodel Elle Macpherson, jumping on the “wellness cures cancer” clown train.

She deliberated for several weeks, seeking advice from 32 doctors and experts. In the end she went to a beach in Miami, prayed and meditated, and made one of the biggest decisions of her life: Not to undergo chemotherapy. Instead, Elle opted for “an intuitive, heart-led, holistic approach” to treating her cancer*

She gave interviews about her rejection of chemo and other standard treatments and “success” with holistic care during her stage I breast cancer.

Macpherson’s magical unrealism cancer cure story was in part a lie of omission, as her stage and type of cancer do not always require chemo et al. But the peanut gallery eats up this b.s. about beating cancer without traditional medicine the same way anti-vaxxers cling to their delusional stories.

I have been riled by the phenomenon before. When cancer survivors Melissa Etheridge and Sheryl Crow did an interview with AARP magazine a few years ago it was full of the false promises of wellness.

I can’t find the original article online now, just a bullet pointed version on the AARP site that has redacted many of the worst lines of the interview after widespread criticism.

The overall tone is still there though. “How Sheryl Crow Beat Cancer”, including meditation helping her “cells”, organic food, “stress” caused it and all the rest of the usual hokum. There is scant mention of the medical treatment that actually saved her.

Sometimes it seems like every time a famous person gets cancer, a wellness fairy spreading rampant disinformation gains its wings.

Now we have Elle Macpherson, Aussie hawker of green juice powders extraordinaire, claiming she cured her cancer holistically, thus proving that cancer does not always make us smarter.

The harm caused by the wildfire spread of what amounts to holistic snake oil via celebrity cancer mouthpiece is not insignificant to the life of an average person with cancer.

Know that I say this as someone who meditates, does yoga, and had Reiki during my own cancer treatment. Holistic assistance is fine – doing whatever you can to feel better is good. Just stop pretending it is doing the work of actual medicine.

We are who will suffer the brunt of this disinformation plague from the numerous “experts” we are bound to encounter who regurgitate this mindless babble in life, in our feeds and emails.

Sometimes it feels like everyone wants to believe that cancer has some secret “get out of jail free” card the rest of us dummies with cancer simply haven’t figured out. The othering of people with cancer by wellness smuggery spaces is one of the most toxic (ironically) forms of brain rot we have to deal with.

Macpherson’s comments have been contextualized and argued against by saner voices, which has bizarrely led her to double down.

The Guardian, which came under fire for reporting Macpherson’s story without the correct medical context, at least did a follow up:

In itself, a lumpectomy may in some cases be an appropriate, standard medical treatment for the condition, said Prof Chris Pyke, the director of medical services at the Mater private hospitals in Brisbane.

Pyke, a cancer surgeon and breast cancer risk quantification expert, said HER2 positive oestrogen receptive intraductal carcinoma in many cases could more accurately be described as a type of non-invasive precancer that has the potential to become aggressive if left untreated.

…“Almost everyone does meditation, or takes a vitamin, and I say if it won’t interfere with the treatment, do it. And the second thing I say is that the only things which have been proven to treat cancer are surgery, radiation, chemotherapy and hormone treatments.”**

I wish people weren’t so quick to dismiss decades of medical treatment, research and progress in treating cancer because it frightens or doesn’t appeal to them. I am eternally stupefied by whatever the facet of human psychology is that emboldens some to think they know better than medical professionals.

The article goes on to call out how negative the impact of these often agenda led famous people can be on people’s better instincts.

Vicki Durston, the director of policy, advocacy and support services at Breast Cancer Network Australia, said providing the correct, full context to Macpherson’s treatment and her decisions “are so important to get the messaging right to alleviate fears and cut through the noise”.

She said media reports “are confusing for people that are currently in treatment” and some were now starting to question their own choices and approach.

“It’s important that when high-profile figures like Elle Macpherson share their story, they need to understand that their story has enormous impact and reach,” she said.

Dr Brooke Nickel, a National Health and Medical Research Council emerging leader research fellow with the University of Sydney who has researched media reporting of healthcare, including cancer, said Macpherson also owns a wellness company and patients should factor that in when considering her comments while also consulting doctors.

Speaking generally, Nickel added: “The public and patients alike really need to be wary of celebrities, and increasingly social media influencers, who discuss this kind of wellness or alternative therapy approach and who may be profiting from associations with brands and products.**

Famous people who get cancer and live thinking it is because they are special or know things the rest of us do not should hardly be a surprise.

I know that most sane people will roll their eyes and move on with their lives.

But people with cancer, or those like me who are past it but still occasionally have to deal with it, cannot simply ignore it and hope it will go away.

Because it never does. Because it invades public perception insidiously. From the family member telling me confidently that grapes prevent cancer (because she read it in a magazine), and other near constant disinformation we are forced to either smile and nod at or what, try to change their ill informed opinions? Why is the onus on us?

If eating clean cured cancer I think we all would know by now. I have been sent all of the flavors of cancer quackery emails, after I finished chemo. It was really hard not to wish those people, who are my friends, had to go through it for even a day. Maybe then they would know how insensitive they are being.

Other than known lifestyle factors like drinking, smoking, and weight, there is very little most people with non-hereditary cancers can do.

When I was diagnosed I was a healthy 28 year old non-smoker and vegetarian for much of my life. My type of lymphoma (primary aggressive mediastinal) did not care, because it most commonly occurs in healthy young women.

I get why people with cancer want to feel like they can control their disease by overhauling their diet and lifestyle. I am not saying it can’t help; do whatever you can to feel your best.

But to imply or state that wellness and diet can somehow prevent cancer or stop it returning is patently false, and it results in undeserving weight landing back on the shoulders of the patient.

I wasn’t sure if I would mention Catherine, Princess of Wales’ recent cancer. It has been largely shrouded in mystery. We were told she was having some sort of “preventative” chemotherapy, after surgery to remove an unspecified type of cancer.

The public hasn’t been privy to any details, which I don’t disagree with. And yet. We keep getting these announcements from Kensington Palace that are obviously meant as some sort of gesture of being open that fall flat.

No one wants to see an ailing Kate, but somehow the sight of her looking perfectly healthy, then disappearing from public view, to return this summer looking entirely unscathed by the experience, has been disorienting.

The latest video announcing that she has finished her treatment is a bit tone deaf I feel. It shows Kate and family frolicking in the countryside, having a fun day out. Kate narrates in generic sounding cliches about life and love and family.

While none of the sentiments are untrue, the glossy weirdness of it is the overwhelming takeaway. There is slight mention of the struggles of cancer, almost as an after thought. The film is careful to show only happy, sunlit joy, and imply that life after cancer promises all good things. No mention of the stress of the first few months (and years) of check-ups after treatment, or the related health after effects many with cancer go through.

Do I expect someone with Kate’s highly curated and controlled image to talk about the real feelings of isolation and fear, of staring death in the face changing you forever? Probably not. But it would be a nice change.

Instead, what she, and many famous people with cancer offer is an unrelatable experience covered in the usual glossy sheen of cliches and terrible advice on how to cure yourself with wellness and other nonsense.

This all contributes to the barrier we feel between us as sick people and everyone else, who would rather not deal with us on a real level.

It’s yet another missed opportunity in the true “battle” of many cancer survivors: the battle to feel human again, and not so alone, during and after treatment. To be understood, and not dismissed by people who would rather not dwell on it or think it might affect them in their lives.

So it goes. I found and continue to find hope in real connection, and open discussion of how cancer has affected me.

It’s less easy to share as it’s not delivered in the hazy feel good filter version of cancer that some prefer. I will keep trying, because it never gets better unless we disrupt the invalidating narratives that leave many cancer patients feeling alone.

Because we are not alone, and if nothing else we have each other.

*EXCLUSIVE: Elle Macpherson on what she has learnt about motherhood, business and wellness — WomensWeekly.Com

“You won’t believe what the AARP published about breast cancer!” — Knight Science Journalism:

***“Crucial information missing in Elle Macpherson breast cancer story, experts warn”: The Guardian

This article was originally published by the author on Medium.com

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