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“Sticks and stones may break your bones, but words will never hurt you,” was a phrase uttered in my household growing up. This was usually preceded by an insult or verbal nastiness from a cousin or sibling. With all due respect to the adults who doled out this prescription…Worst. Advice. Ever.
Words do hurt and have the power to evoke the strongest emotions. Chances are, if you’re reading this, cancer has been one of the most powerful, painful, transformative, definitive words of your life. It’s a word that takes less than a couple seconds to say, but its effects permeate a lifetime.
Through personal trial and error, I’ve found that after spending some time thinking about the vocabulary, it is possible to transfer some of the control from cancer to myself, which is a welcomed feeling considering how powerless cancer makes me feel. I’ve also learned that the vocabulary is different from person to person. If you’re not sure where to start, below are a few of the guidelines I’ve created for myself when talking cancer. Hopefully some of these will get you inspired to create your own list.
I have chosen not to claim cancer. Don’t want it. Never have. Never will. Therefore, it’s not “my” cancer, but “the” cancer. “I don’t have cancer,” but “there is cancer inside my body.” Sure, it’s a play on words, but this is how I make sure cancer knows it will never be mine no matter how hard it tries. Also, something about the word “patient” makes me feel helpless, which is why I refer to myself as a “survivor”, which makes me feel powerful. This is a label I attached to myself the day I was diagnosed and not the day I heard, “no evidence of disease.” There are many definitions of “survivor” but it’s pure context is, “to endure or live through (an affliction, adversity, misery, etc.)” so I am surviving no matter my current medical status.
One of the many things cancer has taught me is that most people do not know how to respond when I tell them how it has impacted my life. I can easily predict the deer in headlights look as the person searches for the right words. Naturally, they respond with a cliché, pre-packaged, canned and sometimes offensive response. I totally get it. I used to be this person. I still am this person sometimes. Cancer is so awkward and uncomfortable. However, what I have found useful is to tell my friends and family what’s up, ahead of time, if possible, through an email message, so they have time to process and formulate a response. In addition, I’ve also found it helpful to tell them what they can say to encourage and support me. Doing this has made it easier on both of us. Our friends and family want to be a source of encouragement and support and it’s unreasonable that we expect them to say the right thing when they have no idea what we need or want to hear. Here’s a couple suggestions I’ve used in the past:
Instead of saying, “I’m so sorry you’re going through this,” I ask that they say, “I know you have the strength to get through this,” because I do. The former invokes feelings of pity, while the latter makes me feel strong and supported. I also asked for my supporters not use battle language or tell me to beat it, stay strong or positive. My feeling towards these phrases is that they imply if I just try a little harder, then I will be healed. Being the recipient of these words only invokes feelings of guilt if I don’t beat it or have the inevitable and normal periods of weakness or negativity. Cancer is not a matter of trying hard enough. And when all else fails, I enjoy the honest simplicity of, “I don’t know what to say.”
And for the love of all that is holy and sacred in this world, please, I beg of you, do not say that someone, “lost the battle” if they pass away. We don’t describe death from heart disease, freak accidents or natural causes in this manner. Using this phrase implies if the person only fought harder, they would have not died. “Loser” is the exact opposite word I would use to describe someone who’s been through cancer treatments. Those impacted by cancer endure surgeries, toxic chemicals, crazy side effects – cancer survivors are hard core, bad-asses. The strongest of the strong. Not defeated losers. In fact, in the Sorcerer’s Stone, Dumbledore wisely says, “Death is but the next great adventure,” which seems like a fitting description for those in the First Descents tribe, who have passed on.
Again, these are the terms that work for me. Just like every cancer is different, the words we find comfort and power in will be different. I encourage you to spend some time thinking about your vocabulary and once you’ve built your dictionary, tell your support team.
Stacie Chevrier grew up in Detroit, Michigan, the state who’s locals often refer to it as, the Mitten, which just happens to be her FD name. Mitten moved to Nashville, TN in 2011 by way of short stints of living abroad in France and China. She was outliving it before her diagnosis of a rare Neuroendocrine Tumor (NET) in September 2014 and cancer only intensified her thirst for adventure. She ran her 10th half marathon days before starting chemotherapy. Then six months after treatment, she hiked the last 300 miles of the Camino de Santiago, a trail across northern Spain…alone. In September 2016, Mitten participated in a First Descents surf program in Santa Cruz, California. When she’s not plotting some big adventure, Mitten is busy practicing yoga, writing a novel, blogging at www.staciechevrier.com and spreading awareness for NETs, which has the highest growing incident rate of all cancers. In January 2017, she was appointed as a Patient Representative with the FDA to speak on behalf of those impacted by Neuroendocrine Tumors in clinical trials and approval hearings.