By Beth Caldwell
I’m gonna rain on everyone’s parade today. I know I sound all super negative these days–maybe it’s having had so much disease progression, maybe it’s feeling like crap from chemo…or maybe it’s just that after over a year of living with metastatic breast cancer, I’ve stopped being polite and started getting real.
If you’ve been reading my blog for a while, y’all know that metastatic breast cancer is incurable. Sure sure, we all hope research will swoop in and save us, and exciting breakthroughs make headlines every day, yadda yadda yadda. Except, we’ve heard about exciting breakthroughs lots of times over the years, and yet, the average lifespan with MBC remains 2-3 years. So, let’s face the reality as it stands today: I will die of or with my disease. (And MBC isn’t the only cancer that falls into the incurable cancer category–many cancers have even worse average lifespans than MBC, and with even less research dollars than us breasties get.)
Which brings me to the topic of this post: the word “survivor.” People always ask me why I don’t like that word, and why I don’t call myself a survivor. Lots of folks don’t understand why it’s such a loaded word for many metsters, why it makes us feel so excluded from the broader cancer community that has a legitimate chance of living a full lifespan and dying of something other than cancer. I can’t speak for everyone, because we all come at these issues a little differently, but I can explain where I personally am coming from.
Let me use an analogy, because y’all know I love analogies. Say you’re in a plane crash, but you don’t die instantly–instead, you linger on in a coma for a day or two, and then you die. Would you say that you survived the plane crash? Of course not, because you died. That day or two of suffering from your injuries doesn’t change the fact that the plane crash was the cause of your death. You didn’t survive that plane crash, you died from it. It killed you.
Or how about another analogy: my grandfather served as a bombardier in the Korean War, but he died when his plane went down during a bombing mission. Would we say he survived the war? Of course not, he died in the war. That he flew quite a few missions before he died doesn’t make him a survivor of the Korean War.
Well, that’s what metastatic breast cancer is like. We might not die right away–we might suffer through treatments for a while, but eventually, nearly all of us will die of our disease, and 100% of us will die with our disease, because it is incurable. So, how can I be a survivor of cancer? I can’t, of course. How can you survive something that will eventually kill you?
For me, hearing the word survivor is a constant reminder that I’m different from non-terminal folks. It’s a button that people push, a button that says “That will never be you. You’re going to die.” I don’t really enjoy thinking about my death if I don’t have to, so I wish people would stop reminding me of what will never be. I will never be cured. I will not survive my disease. And you’d be surprised how often you see the word “survivor” in cancerland. Yesterday was some sort of national survivor day, and I know of two cancer conferences that happened over the weekend with the word “survivor” in their name. I didn’t attend either of these conferences. Just hearing the title of them turns me off and makes me feel like they aren’t for me.
What word do I use instead? I usually call myself a metster in the breast cancer community, and a cancer patient outside that community. I think some folks don’t like being called a patient because sometimes being a patient feels more like being an object than a person. But for me, I mean, it’s not like I can get away from the reality of treatment. I’m a cancer patient, and I will be until I die. What I’m not, and never will be, is a cancer survivor.