February 27th, 2019
| Survivor: Kidney Cancer
Harry Potter is nearly the only character in his book series unafraid to say Voldemort’s name. The wizarding community at large tends to avoid saying it at all costs. While everyone refers to the evil wizard as “He Who Must Not Be Named” or “You Know Who,” Harry defiantly refuses to use a euphemism. As a recent cancer patient, I often feel like the only Harry in a room, while people around me all cower in front of "That Which Must Not Be Named."
People treat cancer as if even whispering the name gives it power. I’ve told many people in my life about my kidney cancer diagnosis over the past two months. Yet, I can only think of two who have said the word “cancer” in my presence. Both of them are cancer survivors who shared their stories with me.
Popular substitutes for the word “cancer” include pronouns like “this” and “it.” This kind of misguided beating around the bush does no one any favors. Cancer has a name. Please use it.
Society’s stigma against openly talking about cancer or other serious illnesses needs to stop. The spread of awareness comes to a dead end when people reserve discussion for whispered conversations behind closed doors. Talking about cancer should be loud and from the rooftops if we have any hope of making progress.
Of course, when talking about specific patients’ stories, supporters have to follow the lead of the fighters and survivors themselves. It’s vital to allow patients to decide how much of their stories they want to share in any given situation.
Not that I have experience with this, but please do not walk up to a random employee in Trader Joe’s and tell them apropos of nothing that your daughter now lacks a kidney. Cancer patients lose enough without having control over their own stories stripped away. Ask your loved ones what parts of their cancer journeys they want you to share.
Sensitivity needs its due. It is a disservice to cancer fighters when people blindly tout their “strength” or “bravery” without acknowledging the realities of individual prognoses. It’s OK for patients to decide to keep parts of their journeys private.
But to spread awareness about deadly diseases and protect those who need it most, the duty of those with loud voices is to make sure they carry.
As a supporter or caregiver of someone with cancer, it is your job to brandish the word “cancer” in meaningful discussion to raise awareness. Beyond that, it’s your responsibility to step back. Let cancer fighters and survivors have their voices heard first and on their own terms.
Childhood leukemia survivor Emily Ransom wrote in a poetic essay in 2010, “I had cancer; cancer never had me.” Like her, I put reins on my cancer instead of following its lead. I define cancer; it does not define me.
I named my cancer Vlad.
Years ago, I heard that people name their diseases to differentiate themselves, find peace with their lives, and take control over their situations. That reasoning made sense to me. So I decided to put a new name on the vampire that was sucking my life out through my kidney. I didn’t know he existed until a couple of years after he spawned, but Vlad was removed on January 3. Sometimes Vlad still whispers to me through sudden pain or dark thoughts.
But now, as if I were a conjurer, I can control this demon.
A new life of survivorship came to me after my surgeon removed Vlad a few weeks ago. It is impossible for me to step back in the crowd and go on as I did before. I’ve thought a lot about what I want to do with Vlad now that I am his master. I decided to summon him into existing initiatives as well as lead my own force for empowerment.
February 4 was World Cancer Day, a day to spread awareness by sharing stories. though a special holiday may pass, cancer remains in this world. Remember that every day is World Cancer Day.
I invite you to use the hashtag #NameCancer to tell the world you do not fear That Which Must Not Be Named. As a supporter, call cancer what it is. As a fighter or survivor, give your own name to it. Cancer is cancer, and cancer just happens. It’s up to us to tell it who’s boss.
I had cancer. I named my cancer Vlad.
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