This post was contributed in response to Jessie Gruman's What I Wish I’d Known Earlier about Cancer Survivorship series about the unique needs and responsibilities of people who have been diagnosed and treated for cancer.
I am not proud of this, but the celebratory, heroic use of “cancer survivor” gets me riled up. Every time I am confronted with the ads, the billboards, the walks, and so on, I wish the survivor celebrations didn’t rub me the wrong way. Reading the last few sentences is no doubt causing you to think to yourself – what a jerk this woman is. Why in the world would celebrating cancer survivors make anyone feel angry? Well, because these celebrations cast the survivor in the starring role of hero and winner. The rhetoric tends to make it sound like survivors did something special and deserved to triumph. And then I remember my brother-in-law, a dynamic guy in his early 40’s who died of acute lymphocytic leukemia (ALL). He so wanted to be a survivor.
The heroic use of “cancer survivor” comes wrapped up in all the battlefield analogies used when talking about this terrible set of diseases. In some ways it is peculiar to, and dates back to, the launching of the War on Cancer. Fighting this war requires physicians and individuals diagnosed with cancer to be brave soldiers, to never give up, to try everything possible to beat the enemy: cancer. Underneath it all is the message – if you are cured you won! You’re a winner! But, if you aren’t a winner, then you are…what? A loser?
Why is it that survivors of other devastating personal traumas – fires, floods, tornadoes – rarely use the celebratory hero language? Mostly, they speak of themselves as lucky.
I believe cancer survivors are also lucky. They are lucky if the stochastic spin of the mutation roulette wheel gives them tumors that respond. They are lucky if the idiosyncratic nature of biomedical research has found effective treatments, and they are lucky if the treatment doesn’t destroy some major organ system, or wreck their immune system, or damage their minds. They are lucky if, during the course of never giving up and trying that one more thing, they don’t acquire a drug-resistant infection that kills them.
As Jessie Gruman has eloquently described – survivors get to survive, and it is rarely triumphant.
My sister (a compassionate nurse) shares my feelings, but it is harder for her to talk about them. Her husband was a fighter. He wanted to live. He wanted to beat ALL. He was willing to try anything and everything. His desire to fight till the bitter end meant he did not have what has come to be called a “good death.” He didn’t die because he didn’t try hard enough or because he didn’t want to live enough. He didn’t die because he wasn’t a winner. He died because he was unlucky. He died because he had the wrong kind of tumor.
I also get angry when I think about what it must be like to be someone who, after much soul-searching, bravely decides to forgo end-stage treatment. In my view, this takes a special kind of courage. Does the heroic survivor rhetoric make it hard for those patients who, after weighing all the evidence, looking at the statistics, and considering the odds, decide that they are not going to fight till the bitter end but rather choose, in a what is surely a strange turn of the phrase, to make peace with their disease?
Sometimes I wonder if my negative reactions to the celebrations of survivorship reflect my fear that all the talk of battling, beating, winning, or losing doesn’t reduce cancer to an adversary we can beat if we just stay strong. Unfortunately, strength tends to be one thing serious illness robs from you.
Lastly, the celebration of survivors tends to lump too many people into the same boat. In the celebratory spirit, cancer survivor encompasses everyone from individuals treated for relatively benign conditions to individuals who survive what Jessie Gruman has called devastating diagnoses. Survivors in the latter group know that they didn’t fight harder, or try harder, or want to live more than those who didn’t survive. They were just luckier.