Not Behind Me, Woven Into Me

“I don’t think anyone ever gets over anything in life; they merely get used to it.” – Douglas Coupland

In my view, cancer is a two-headed monster. There is the actual disease, the medical condition, to be dealt with as best possible, hopefully to ultimately achieve a NED status. Then there is the other head. I don’t know what to call this head, other than the culture of cancer, which angers and repulses me for the most part. For me this includes everything from the warrior metaphors, the fuzzy-wuzzy, airy-fairy “hope-believe” and tyranny of positive thinking that I do not buy into, and the supposed path a cancer patient is to complete: one of getting treated, taking advantage of the personal growth and enrichment opportunity by learning lessons and accepting cancer as a gift (how do those poor saps who do not get the gift of cancer ever grow to be better people—YES I’M BEING SARCASTIC), and then putting cancer behind once treatment is all done. There is probably more I’m just not thinking of right now.

**Side note: I’ve written about much of the above before, and my feelings and opinions have changed little. See list of related posts at the end.

It is that last notion, the one in which “now that I am done with treatment I am supposed to be over cancer” that is chasing its own tail in my head.

From the day I learned I had cancer, the idea that I’d ever be over cancer just did not make sense. How can one get past cancer? The biggest obstacle to that lofty goal is the constant fear, however sharp and present or dull and distant it is, that cancer will come back—it is always there. Not to mention that I will always have to ‘fess up to having had it, when getting new medical care providers or insurance, or who knows what else; I always have to check that box in medical history. Cancer is my history, and history has everything to do with the present.

I’ve written about the pressure from non-cancer friends and acquaintances to be over cancer, the “aren’t you done yet” question directed at a patient even in the middle of treatment (see list below), because most people cannot understand just how long cancer treatment takes. I may have mentioned in other posts that I’ve seen comments on articles (usually in mainstream outlets, CNN, HuffPo, etc) that say something along the lines of “I had breast cancer and I’m over it now, cancer is behind me, cancer was no big deal”. These comments strike me as disapproving and dismissive. I know I am being judgmental and unfair when I ask: if these people are so over cancer, why are they taking time to read the piece, and taking even more time to comment, often to chastise the author or other commenters for not doing cancer right, or, their way?

I know I am unfairly measuring these folks by my own yardstick. My idea, or ideal, life of being over cancer is the one I had before, in which I did not read, much less comment on, articles, reports, blogs, and books that had anything to do with cancer—treating it, preventing it from coming back, and coping with it. Maybe this is not the ideal life in other patients’ views. But I want back that life in which I did not have scars on my breast and under my arm, in which I did not have little blue dots tattooed all over my torso marking me for radiation, one in which I never lost my hair and it came back kinky and grey in spots, in which my memory is not missing huge pieces of information, in which I do not tire so suddenly and so much faster than someone my age should—need I go on? In short, to be over cancer for me is to return to how I lived before, and that included NOT talking about cancer and having to deal with the everyday fall-out.

I know that I am being childish, that just because the “I put cancer behind me” types of folks have unfairly judged other cancer patients for still “wallowing in cancer”, it does not excuse me from going, “wah-wah, they started it!” and judging them right back. But I just cannot see beyond my own frustration about this right now.

Perhaps my interpretation of the put cancer behind/cancer is in the past concept is way off mark. When I hear or read it, it seems the person saying it is implying that if cancer is behind or in the past, it has no bearing on the present. Like cancer was just part of life’s to-do checklist: go to college, get a career, have kids, get over cancer. But the funny thing is, college, choices made regarding (not) having (how many) kids, and employment, have huge lasting impacts. Why would it not be the same with cancer? Why is the idea to put cancer behind a person, as if over and done with, forgotten almost, or at least be no big deal (really sick of seeing that phrase) so accepted?

french-braid

The language of cancer is rife with metaphors, causing me to start to hate them lately. But as it is impossible to not use them, I propose a different metaphor than this idea of: I crossed cancer off the to-do list, with the tasks neatly tucked in the past, not touching the present. Maybe life and the events contained within it are more like a French braid. The braid starts out with three locks of hair, crossed one over the other, then a new lock of hair is picked up and woven in with each new criss-cross. Cancer is just another one of those locks of hair. For me the cancer lock is one of the damaged and grey locks that I grew back much to my horror (along with my normal brown hair, my new hair is a real odd mix). An old, bad relationship, and the miserable job I left, those are also frizzy, grey locks. If I just put the cancer and the miserable job behind and ignored them, or to keep my stupid metaphor, ignored the objectionable locks of hair and refused to include them in the braid—what kind of braid would that leave?

Of course I’ll never be over cancer; it is woven into my life. It is acceptable for me to make choices regarding my future employment based on wanting to NOT repeat having a job that took up my life 24/7 and made me miserable; why is not acceptable that I bring my experiences with cancer forward as well? That is not to say all the fall-out from the miserable job and cancer was terrible. As loathe as a Cancer Curmudgeon is to admit it, there was some good fall-out. If I’d not made to choices to take on, stay in, and quit the horrible job, there would be people and opportunities missing in my current life. If cancer had not happened to me, there would be other people missing, and other things missing. Just as the bad and good occurrences make the life, the crappy grey hair and the sort of normal brown hair makes the braid.

Putting cancer behind me, getting over cancer, is just another one of those expected behaviors, those parts of cancer culture, like wearing Pink, or calling myself a warrior, or forcing myself and encouraging others to be positive about cancer, that I refuse to take part in.

Posts that have more thoroughly expressed ideas mentioned above, in no certain order:

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Author: Cancer Curmudgeon

Oct 2010 diagnosed with Stage 3, HER2+ Breast Cancer. Completed treatment Jan 2012. Waaaaaay over pink. Applying punk rock sensibility to how I do cancer.

8 thoughts on “Not Behind Me, Woven Into Me”

  1. dear CC,

    it’s a huge challenge facing the truth that our cancer experience is woven into us – not left behind (how could it possibly be THAT?) or glossed over with the warrior mentality, or relegated to pink-washing. I think that as humans it is often the case that we want to escape such a brutal experience, but cancer changes us – forever. owning up to that truth is the first step forward to integrating the experience into our lives. perhaps it’s in the form of grieving our losses, which is so hard, but necessary to our well-being. my hope for myself and for others like you who are reviewing those losses is that we are able to feel compassion for ourselves, to love ourselves, and to look back and wonder at how the hell we made it to where we are now, then to examine in a mindful way of how to go about picking up the pieces – what do we want to save, what can be let go of. it all depends on so many variables, but the big question is, do we want to live authentically, and how do we get there? the act of seeking out those answers is living (literally) proof that we are still here, in the present, right now – and that though cancer may be trying to insinuate itself into every facet of our being, we have choices to prevent us from it defining us. it’s not about, no it is not, about being in denial. it’s about looking at the big picture and deciding where, when, how and which parts of the picture really matter. we may channel our experience to help inform others, we may, like you become advocates, we may dance towards or away from things that were once a huge burden of pain and shock and misery, and we may or may not chose what remains. to me, as far as I have gotten in this current treatment, as well as navigating grieving, the thing I cling to most are the “in between” times when I can savor being alive, feeling happiness, and some modicum of accomplishment however insignificant it may appear to others. and that is a way to take full ownership, but to also make allowances for the possibilities I may not even realize are somewhere in the horizon for me. I am sticking to the message I got in a Chinese fortune cookie today – ‘BE PREPARED TO ACCEPT A WONDROUS OPPORTUNITY IN THE DAYS AHEAD!”
    and as far as facts go – it could happen! great post,CC – keep writing and telling the truth.

    much love and light to you,

    Karen xoxo

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  2. Some time ago, I don’t know how long ago because days have no meaning to me, I don’t have a job nor work from home, most days I feel pretty useless, especially waiting for my next surgery. Anyway, sorry about that, I got off the track. Someone had read a post that I put up and it had nothing to do with my breast cancer but the commentor said something with good intentions about breast cancer or how brave I was and I said something back, like, “yeah, well, I “HAD” breast cancer.

    My response is what bothered me. WTF is with the past tense? Where did that come from? Just because I don’t have breasts anymore doesn’t mean that I am finished with breast cancer, does it? I KNOW that once cancer has lived in one’s body, it leaves relatives behind that may or may not set down roots somewhere else in the body.

    I know why I said what I said, I didn’t feel like getting into a big speel with the commentor, I didn’t want to ‘explain’ anything, but I hated myself for having written about cancer in the past tense. It’s never going to be in the past tense, the thought of it will be with me for the rest of my life as I wait to hear those awful words again, “it’s cancer.”

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    1. Yeah, the past or present tense thing is one I struggle with. I mean, I have no evidence of disease right now, but I still see an oncologist twice a year, so I’m still a cancer patient….and I’ve written before about not knowing what to call myself (I don’t like survivor, insults mets patients, and if it comes back before I have the opportunity to die of something else, well, that would not make me a survivor, so that word just sucks).

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  3. I’ve written about this a lot, too. I’m not feeling very eloquent this evening, but I so get it. Me, I think the best that can be said is if we can use our experience and our reality to help someone else realize they’re not alone, that they don’t have to be in denial, because it doesn’t help anyway, that it’s okay to tell it like it is. An old post of mine: http://accidentalamazon.com/blog/2010/02/02/cancer-happens/

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    1. Thanks Kathi you DO get it. I guess this is all I’ve ever tried to do with this blog–as other blogs from the like-minded helped me right after treatment ended, I’ve tried to do the same here. Thanks.

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