Why I don’t call myself a Survivor.

And, then the internet exploded.

Ha, not really, but the fervor of the ensuing debate, especially in the groups that have both early stagers and metsters blindsided me.  I completely get that there are differences of opinion and different experiences and I’m all for differing points of view.  While we all have breast cancer, there is a variety of experiences and backgrounds, all of which are valid.

Yet, this word “survivor” is much more polarizing than I realized.  I suppose I should not have been surprised since I have very strong feelings about it too and I’ve taken a bit of heat when I’ve resisted the label.   It took me a bit to figure out why I have such strong feelings and that’s not a situation I find myself in very often–I am usually able to define and explain the why behind my positions fairly quickly.

Survivor is a word with many nuanced meanings.  As I’ve been drafting this post, I googled the definition of survivor and read pages of explanations and definitions.  I am aware that the American Cancer Society’s definition of the word survivor does include anyone who has been diagnosed with cancer, period, and that the survivorship starts right after diagnosis.  This sounds nice and inclusive and I know that many accept this view.

Yet, survivor is past tense, meaning that the experience is in the past, it is over.  Without getting too detailed on the diagram of a sentence (I took several classes on linguistics, folks), and the transitive or intransitive nature of this verb; let me say clearly that this is an issue with a lot of tangible and intangible moving parts.  I really don’t think that there is a hard and fast right or wrong answer on this one.

At the same time, I do have an opinion as to how this label applies to me …

While cancer is a diagnosis that never actually ends despite what some doctors say or early stagers hope, there are truly those people who look at having cancer as something in the past, over.  Some doctors use the word “cured” with early stagers when they are done with active treatment.  I totally understand that in order to live life without feeling as though the sword of Damocles is hanging over one’s head, it is preferable to believe that you “survived” cancer, that is in the rear view mirror, that you are indeed “cured.”

Well, those of us metsters are always in #CancerLand; that sword is a permanent fixture over our heads; and the experience of cancer will never be in the past.  For me, utilizing the term and celebrating “survivors,” only drives home to me that I (and my friends who are also metastatic) will never not have cancer, that we are excluded from that club.

Stage IV metastatic breast cancer is the only stage of breast cancer that is 100% fatal.  Unless there is a cure found before I die, I will either die of metastatic breast cancer or the side effects of the cancer or the side effects of all the medication I’m taking.  There’s no relief from that reality for me.

Please stop and think about that for just a minute.

I WILL NEVER NOT HAVE CANCER.

I am angry about this.

The fact that there is no cure right now, for me, is infuriating and devastating.

Any time I’m reminded of my impending mortality, it cuts my heart open again.

Any time I’m reminded that I won’t get the chance to see my children reach adulthood, I am overcome.

That’s quite a bit of feeling roiling around, all the time, just beneath the surface.  It honestly doesn’t take much for those feelings to come out, to boil over.  Sometimes that comes out in unkind ways, as much as I try not to.  Being a terminal cancer patient is freaking hard.

As I struggled with my feelings about the label survivor when I was diagnosed in 2017 and all things cancery, I began following Beth Caldwell’s blog at The Cult of Perfect Motherhood (it’s more than amazing!).  She utilized the following analogies to help explain why she did not subscribe to the label “survivor” for herself …

“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.” **

Beth was a great writer and the world is poorer for her absence–I wish I had had a chance to meet her before Cancer murdered her.

Beth’s words resonated with me the first time I read her blog and still do.

Beth’s analogies laid out a logical explanation for why the word “survivor” just didn’t work for her and doesn’t for me either.  In fact, after I dug deeper into my feelings and examined the foundation underlying them, I think I resent it more now that I’ve considered it carefully.

Bottom line for me, that word is the embodiment of what I can’t have; what will never be for me. That word highlights how I am excluded from the celebrations, the bell ringing and and the fluffy pink tutus.  That word highlights that unless there is a breakthrough in research, I will never be cured.

I fully take responsibility for my own relationship with the word, “survivor.”  That’s my issue, my opinion, my perspective.  If no one agrees with me, that’s ok.  If this explanation resonates with no other person in the world, that’s just fine.  The point of the matter is that this is how I view the world.  This is how I view how I fit into the world.  This is part of how I cope with having a terminal illness.

Just don’t call me a survivor.

** You can read Beth’s full post about being a survivor here: http://metup.org/index.php/about-us/not-a-survivor/.