Words matter when you talk about cancer.
I stuck the "Survivor" ribbon for my nametag in my bag and thought about it for an hour. It wasn't the best way to start my experience at a huge oncology conference in Chicago held a little over a month ago.
While I can't get behind expressions like “lost her battle,” which are so often seen when we talk about cancer, and I seriously dislike the whole cancer "journey" baloney — I’m not "losing" to cancer and I am not on a trip that will lead to enlightenment. But the battlefield term that really makes me cringe is “survivor.”
I understand that it is a hopeful and positive term to a lot of people. I absolutely get it. To be a survivor means whatever had hurt you or threatened you is in the past. You survived and now you are a survivor. But do you know an estimated 30 percent of people diagnosed with early-stage breast cancer progress to metastatic disease? That's 30 people out of 100. That's a lot of people who may have been called survivors. What do they call themselves now? Because they have been calling themselves survivors, are they now losers in that cancer battle?
I'm not one of that 30 percent though. I was diagnosed with metastatic breast cancer right off the bat. The word "survivor" has never applied to me if cancer is the subject. People try to convince me otherwise. A nurse at my hospital says that I am definitely a survivor since I'm alive three and a half years into my diagnosis. A respected doctor tweets that people living with metastatic cancer should be included since we, "are all surviving."
And then there is that ribbon for my week of cancer at the American Society of Clinical Oncology (ASCO) 2018 meeting. Like the "Patient Advocate" ribbon I didn't hesitate to attach to my nametag, the "Survivor" ribbon allows others to easily identify my possible perspective. The ribbons, for good or bad, differentiate us. I suspect that the Survivor ribbon is viewed by the organizers as a badge of honor and reassurance that research
makes a difference. They don't know my personal story, but oncologists should know that "Survivor" is a loaded term and may or may not be used to describe people still in the midst of cancer treatment.
What that ribbon really provides, for someone like me, is a reminder that I will probably never be a survivor, and that if I have to use the term "survive" in my life, it is always with a lot of pain. Words matter, and wearing this one on my chest at an event that was awe-inspiring in its aim to improve cancer treatment for everyone, felt like a lie. No, I didn't have to put it on. I didn't have to obediently agree to label myself with a word that isn't the truth. If I get to attend next year, I'll leave that ribbon off so that what I remember first isn't the Survivor ribbon and the difficult divide between how I am sometimes labeled and what I truly am.