Kill the “Cancer Survivor”

cancer survivor

This is not one of those essays about how empowering it is to deal with cancer. You’ve read all of those. Those stories are laid out like this: Mother of three diagnosed with breast cancer. She undergoes surgery, chemotherapy, and radiation. She loses her hair, forgets her kids’ names, and misplaces her mind. With just enough healthy cells remaining in her body to drag herself out of bed each morning, her doctor sprinkles the fairy dust of remission over her medical file, and she is entrusted with the title “cancer survivor.”

She has just defeated the enemy for women everywhere. She lifted her sword. She fought bravely. She believes she has won the battle, although she knows deep inside: There is no definite cure for breast cancer.

Guess what? That’s not me. So as you read these words, don’t assume that I’m striking a blow for my girlfriends (and guyfriends) across the globe, don’t think that I’m courageous or gallant, and, above all, do not presume I’ve survived the battle with cancer.

However, you can feel free to stop reading and go find cancer survivors. There are plenty of men and women who balance on that pedestal and, if that’s your thing, I’m happy to wipe the dust off your plinth, honestly. But that’s not me, I am not your poster girl, let alone an example of an exemplary soldier.

I was never a warrior. I was just trying to live.

So, why write about myself and my cancer when I’m sick and tired of the finger being pointed at my breasts? Because “cancer survivor” is one of those annoying terms that we need to get rid of, but can’t. It is ingrained within the media systems that control the way we discuss cancer as a disease.

Healthcare professionals ensure the battlefield myth survives when they discuss the functional status of their patients as ones who are warriors battling cancer. When researchers examine long-term survivors, it’s pretty obvious their survivorship studies exclude the survivors who got sniped. Journalists and authors perpetuate the war-rich verbiage by promoting gut-wrenching stories of “cancer survivors” as those who scuffle through the minefields and return as heroes.

We all know it’s easier to sell a good story when there’s a metaphor attached. But expecting those with a cancer diagnosis to load their rifles and sharpen their knives leaves a negative mental impact that far outweighs the disease itself. This battle-laden metaphor draws line, attaches labels, and spreads lies. I’m not suggesting a peace treaty with the term. I intend to aim a missile at it.

Labels suck

Cancer has always had an inflated reputation of being one of the worst diseases known to mankind. To receive a diagnosis of cancer implied victimization and passiveness. A cancer diagnosis meant it was time to start penning your eulogy and figuring out how you wanted to be remembered. Between treatments and the side effects of those treatments, lack of control, pity, and isolation were laced with terror and dread. But in the 1980s one physician set out to change all that.

Fitzhugh Mullan, MD founded the National Coalition for Cancer Survivorship, a nonprofit advocacy group for “cancer survivors.” The new term included everyone from the moment of cancer diagnosis through death and, eventually, guzzled up those nearby, the families of the front-line survivors.

How could Mullen get away with this? A tumor in his chest (primary mediastinal seminoma) drafted him into cancer combat; he battled through surgery, radiation, and chemotherapy, putting in his time and earning his chest candy like all the other cancer patients.

Mullan went on to popularize the term in 1985 with his influential essay, Seasons of Survival: Reflections of a Physician with Cancer. It wasn’t long until the National Cancer Institute, the American Cancer Society, and the American Society of Cancer Oncology scooped up the survivor label and the war metaphor. We all know the media adores a good metaphor. The idea of battling cancer became a healthy marketing and branding tactic for these organizations as those with cancer were quickly tagged as warriors, heroes, and even veterans.

When I was diagnosed with breast cancer, my first thought wasn’t “will I survive this?” It was more like “will I die from this?” You can’t have a front without a back. Yes has no meaning without no. You can’t have survivors without implying there are those who do not survive.

To really understand the progress of cancer and the success of survivorship — as Mullan promoted it — oncologists and researchers still measure cancer mortality. It’s odd though. In Mullan’s hast, he failed to coin a new term for those who died of cancer. The media could have helped him by borrowing casualty or fallen hero from the military jargon list but that would have made it blatantly obvious that the war-torn verbiage was all wrong.

By default, that left the word statistic to describe the cancer non-survivors. Not as all-empowering as “cancer survivor” but, I mean, we have to label them too don’t we?

Those with cancer need some way to think about their plight, to talk about their disease, and to understand their options, believe me I know. But dropping word bombs that imply surviving and not surviving, that suggest winning and losing is wrong. It’s an issue that can no longer be ignored because it’s leaving cancer sufferers full of doubt and void of calm.

Do you want to know what the cheers of successful outcomes from “cancer survivors” sound like to “cancer survivors” who have unfavorable cancer outcomes? If I die, I’ve failed. If the cancer returns, I’ve failed. I’m losing the battle. I have to fight harder.

Lines drawn in all the wrong places

When stamped with the ink of “cancer survivor,” lines are drawn that divide the winners from the losers because every war has those who live and those who die. When the title “cancer survivor” is stripped away at death, it disrespects those who died of cancer. Too often cancer outcomes are discussed, which can be favorable or unfavorable, as a clever way to avoid pointing out the winners and the losers.

For me, I will not let cancer draw a line through my life, dividing it into before and after the battle. I do not want my identity wrapped around the chaos of mutant cells that refuse to cooperate with the real me. I have no desire to lower myself to the war-like mindset claimed by fellow humans with cancer who have gone before me. Nor do I see myself as a worthy opponent against this monstrous disease. Cancer sideswiped my existence, kicked my butt to the curb, and left me to pick up the pieces. The emotional upheaval of cancer — the diagnosis, the disease, the treatment — is brutal, traumatic. We don’t survive it and then continue living on the way we were. We’ve undergone trauma and, the truth is, it changes who we are. That’s not winning. But it’s not losing either.

If cancer is a battle, then you might as well say that Olivia Newton-John is losing, Judy Bloom won, and Elizabeth Edwards lost. But you won’t hear me say that because cancer isn’t about dividing the winners from the losers.

If anything needs to be divided and redrawn, it’s the battle lines we’ve etched around this disease. I say redraw the battle lines to exclude “cancer survivor” from every sentence or paragraph ever written about the disease and put the battle verbiage to rest. Stop preserving the notion that a cancer diagnosis means this disease now resides on the front lines of my existence until the day I die.

The lie is in the language

The term “cancer survivor” perpetuates the lie of survivorship. The language we use to discuss cancer creates needless anxiety and emotional harm because the lines drawn underscore false hope and indifference.

I have two daughters. There was no way in hell I was going to encourage the idea that if I just fought hard enough and long enough, I could win this battle against cancer. That would have been a horrible idea to put in their little hearts. What would they think about their mamma if the cancer spread rather than retreated? If I had died sooner rather than later? That I didn’t fight? That I didn’t battle hard enough? That their mother was a fallen soldier? Fuck that!

Seated deep within the term “cancer survivor” is if you had only fought hard enough. It points the finger of fault suggesting that my mind is spindly and my body is a co-conspirator against me. It implies I should paste on a brave smile and fight. That I should battle harder, smarter, faster. It marks cancer as the opponent and me as the challenger. Sorry to burst your bubble, but that’s a lie. Cancer is not the adversary. It doesn’t care one tiny bit how hard I fight, how hard I work at surviving, or how badly I want to live. Cancer is a disease. And I worry every single day if it will return.

When the mega-cancer organizations examine my life and my cancer in terms of survivorship, are they suggesting that I’ve recovered? When they speak about how I’ve failed chemotherapy, does that mean I’ve failed? The language that surrounds our discussions about cancer needs an overhaul. The terminology dismisses the fact that many people may be living with and through remissions and recurrences. It ignores that a new diagnosis of no evidence of disease doesn’t mean we suddenly feel better about all things cancer-related. When the media continues to perpetrate the idea of a survivor pool, it disregards the ever-present fear of recurrence.

I do not need battle lingo to be brave, to find inspiration, or to live out the time I have left. It’s the human condition to want to survive, I get that. But not at the expense of lying to myself. We need to throw a grenade at this battle metaphor because, like it or not, everybody comes home in a body bag.

Nobody survives

The outcome of a battle is life or death. A survivor, according to the National Cancer Institute, is one who remains alive. This insensitive phrase ignores the fact that nobody comes out alive in the end anyway, cancer or no cancer. Don’t we all remain alive until . . . we don’t anymore? How have we let the term “cancer survivor” distract us from this truth: We all continue to live — to survive — through rotten childhoods, low self-esteem, broken hearts, and the loss of loved ones until we die.

The days of every woman are numbered whether she has breast cancer or not. Whether she hears the words remission or metastasis. We don’t battle heart attacks or diabetes, so why do we battle cancer? If none of us survives this life, what does winning the cancer battle look like? Could it be that, from every angle possible, it doesn’t take cancer to make you a survivor?

Using “cancer survivor” bolsters the fallacy that the whole process of getting and treating cancer is about acts of will such as strength, courage, or determination. But guess what? Cancer doesn’t give a shit how brave I am. Cancer doesn’t blink an eye at my struggle. And cancer certainly doesn’t give a fuck whether I live or die.

Too many women worldwide have had their brains fog over when hearing the diagnosis of cancer. I applaud and admire these women because I know firsthand that the days come and go when fear is thick, tears are heavy, and hope is low. That the moments come and go when faith rings powerful, laughter is easy, and peace runs deep. Together these days and moments mingle into a life that is uniquely hers, with a beginning, a middle, and — yes! — an end that holds a story far beyond surviving life or battling a disease. If we continue to let our culture, under the guise of media reporting, perpetuate the fallacy that receiving a diagnosis of cancer immediately replants your life on to a battlefield, then we are doing more harm than good.

My cancer and my life alone may not prove to anyone that “cancer survivor” is a tired and insulting term that poisons the mind and weakens the spirit. But maybe it will allow everyone to understand that we’re all living — some with cancer and some without cancer. And that the diagnosis and treatment of this disease doesn’t take place on a battlefield, but rather on the acreage of human lives where suffering and hope coexist. My body is not the enemy, there is no white flag of surrender, and cancer cannot be reduced to an agonizing combat. I refuse to use labels. I refuse to draw lines. I refuse to spread the lie of survivorship.

The desire to live and the readiness to die is a personal struggle we all face at some point. Don’t strip me of my inalienable human right to tussle through this effort by calling me a “cancer survivor.” I will not live forever, cancer or no cancer. This is not a battle. I’m not a victim. I’m not a survivor. But I am one badass SOB who is living the best life she can.

As for the term “cancer survivor,” it remains prolific and unrelenting and, unfortunately, will most likely out-survive us all.

One thought on “Kill the “Cancer Survivor”

  1. Danielle Tantone says:

    Hi Julie,

    I came upon your site a few months ago as I’m a nursing student, but only realized last night after reading through some of your other posts how many other things we have in common, such as the fact that you are a writer and that you are a cancer “survivor,” just like me. I really enjoyed your insight in this post, and have wrestled with these very same thoughts you so eloquently shared during my short experience with cancer.

    However, as much as I agree with you that the cancer as battlefield metaphor doesn’t really work, I have yet to hear of a better language with which to describe our plight. While it’s true that we really aren’t even fighting at all, just trying to live, I think there is some merit in making us feel as if we are linking arms with an army against a common enemy, rather than all alone fighting an internal war against a fast increasing army of little cells trying to take over our body.

    Here’s a short article I wrote a few weeks ago that sort of touches on the subject. Hope you enjoy. I’m just getting started on my blog and journey: with nursing, writing as a business, and “fighting cancer.”
    https://www.danielletantone.com/why-pink-makes-me-feel-strong/

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