Probably the most frequent word people use to refer to my breast cancer diagnosis is “survivor” and I use it frequently too because so far I haven’t come up with something better. When I started this journey I had a hard time defining myself as a “survivor”. I’m a “survivor” in another part of my life and never really embraced that label. I felt like it was a way point but not a destination. I wanted to go beyond surviving to thriving. I didn’t want to be defined by what had happened to me that was beyond my control. I often tell my kids that you don’t get to choose the cards you are dealt in life, and sometimes you get a really crappy hand. The important thing is how you choose to play the game. Some of the most amazing people I have met received the worst possible hand in one way or another, yet played it so well that when you look at their life as a whole, the bad cards are only a tiny part of a life well lived. Yet some of the people who seem to have been dealt all aces haven’t done much with their lives. I want to be remembered for how I lived – for bringing a little light into this world. When people remember me I want them to do so with a smile. I want the bad things that have happened to me to be a footnote in a really thick book full of adventure, light, laughter and love.
When I was diagnosed with breast cancer I started hearing the word “survivor” and my first thought was “not again!” Then I wasn’t sure it even applied. I couldn’t figure out at what point you were given that label. At the end of treatment? When you are officially dancing with N.E.D.? At 5 years? At 10? I hesitated to use the term as I wasn’t really sure it fit. Later I heard a few people state that you are a survivor the minute you get the diagnosis. That makes more sense to me. There is a clear starting point with no room for debate. By defining it from diagnosis it no longer appears to be a goal to achieve. If we have the diagnosis and we are still here, we should qualify for the designation. It says we are all in this together. That at least makes it a little more comfortable.
While contemplating this post and having “I will survive…” rapidly attaining ear worm status in my head, I looked up the definition for “survivor”. I used Google because as we all know, Google knows everything. The definition that popped up surprised me. It really threw me for a loop – “a person who survives, especially a person remaining alive after an event in which others have died”. I wasn’t expecting that. I don’t want a label that is defined by the death of anyone. So then I checked Oxford online as I thought they might have a broader definition that wouldn’t be so uncomfortable and found that google pulled the definition from the first one offered by Oxford. Yikes! Their second definition – “The remainder of a group of people or things”. So kind of the last man standing? I had to stop and really think about that for a minute. I had so many mixed feelings as I thought about all of those with the same diagnosis who aren’t here today. Do I want to have a label that means I didn’t die when others weren’t so fortunate? Do I have a choice?
In the end I decided to do my best to accept the term because I can’t think of another one that is any better. I need a way to talk about myself when I want to convey the fact that I am a member of this club that no one wants to join. I will try to see it as a label that doesn’t define me by my diagnosis but by the amazing group of people who share my journey. When I hear the word survivor I will remember all of those who have gone before. Those who participated in clinical trials that led to the treatment I received. Those who fought to bring breast cancer out of the closet and remove the veil of shame. I will think about all of the amazing people I have met who are not only fighting their own battle with this disease, but devoting themselves to advocacy for all of us. I will think of those with metastatic breast cancer and pray we find a cure in time. And I will think about those who are just getting the news. Those whose world is turning upside down as they hear the words “you have cancer”.
I’m still looking for something better to define this part of my journey. When I take the time to contemplate my identity, there are so many terms that come to mind that help define who I am. I’m a wacky collage of nouns, verbs, adjectives and even a few adverbs here and there. Some of the words used to describe people affected by cancer just don’t seem to fit. They mess up my collage as if someone spilled paint on it in a color I don’t like. I laugh too much to feel like a warrior. Fighter seems to make my journey a contest with a winner, a loser and a final bell. Cancer patient reminds me of chemo and I get queasy just thinking about it. But I think I can give “survivor” a small inconspicuous place up in the corner almost but not quite hidden from view. I’ll write it in a pretty font in a color I like with a border around it to keep it contained. And I’ll keep searching for a better word. If you think of something, please let me know. If you see me out and about, just call me Trip.
I never thought of myself as a survivor, just someone living with cancer. 13 years later it has returned, now I get to be a metavivor
I really struggle with it but I haven’t found an alternative. I usually say something like “I was diagnosed with breast cancer.” Or “I have/had breast cancer” but even the tense is problematic because while I hope it is past tense, I’ve met so many people like you who are now metavivors so I know it can come back. Thank you for reading my post and taking the time to comment. I know that I can’t begin to imagine what it is like to be a metavivor but I hope that in some way I can contribute to changing the misconceptions about breast cancer, especially metastatic breast cancer so we can truly find a cure.
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Lifer is another term. Oh hell let’s not label it!
I’m game! Another take on the subject by Maiken Scott over at Newsworks