Heartstrings

My cancer “story” is not cute, nor triumphant (arguably, I mean, I AM alive still), and it does not tug any heartstrings. I put story in scare quotes because lately I’ve been so very tired of every single cliché in cancer—even clichés I use, like “tell your story”. I don’t really object to the phrase, I just hear it too much. Anyway, enough of that ramble.

I’m responding to the Dog Day picture posted by Komen, of dogs wearing bras with balloons in them—you know, for “the cause”, for “awareness”. I and so many cancer bloggers I read objected vehemently to the photo. How can those of us objecting to the sexualization of breast cancer combat this?

Well, for years bloggers have been combating this by writing about the other side—the one that includes pictures of ugly scars, stories of failed treatment/surgery, stories of recurrence or metastasis, stories of the lovely side effects of treatment (hemorrhoids + diarrhea, anyone? no? just me?). But the mainstream media (I swear, I’m not Sarah Palin the way I go on about the mainstream media, there is just no other way to phrase it) prefers the pretty boas on women who kicked cancer’s ass. That does not represent me.

But neither do some of the stories that tell the other side.

I “only” had a lumpectomy, luckily because my 5×6 cm tumor was shrunk by chemo (I’ve had an ugly post about breast cancer competition stories in the works for ages, and one day I’ll calm down enough to finish and post). So I have no traumatic surgery photos to post. In fact, the photos on this blog show a masterfully completed surgery with a neat and tidy scar, covered with a tattoo I got in “triumph”. I have no photos of my hairless self, pics of me in chemo. I didn’t want to document or remember any of that. I was photographed when my hair first started coming back for a work event; I felt I could not object to the photo being taken since it was publicity for the event. These days I wish I’d refused, that the photo did not exist.

I mean, I do have my original images of my first mammogram, that show a big white blob in the left breast, with no matching white blob in the right. It could be a cautionary image-story of how a tumor fools a radiologist into believing a woman just has dense breasts. But it isn’t impressive, eye-catching stuff.

I did not have as hard a time with side effects as other patients I’ve met in real life and online. I won’t say I “breezed through” treatment. Indeed, the fight with the nurse practitioner over whether I had shingles or Staph was a pain in the ass. Especially being put on meds I did not need and did not solve the problem, and the tenacity I had to use after chemo and surgery to get a correct diagnosis. But that is a minor speed bump compared to horrible stories I read.

Lots of metastatic stories I read bring up the fear of dying before seeing children grow up, go to college, get married, have grandchildren. I don’t have kids and never wanted them. So my story is not poignant, would not work in one of those ads designed to make people reach for tissues and credit cards. My story has no such tragic element.

Furthermore, I’ve made no grand contribution to society. Other than my parents and a few random relatives and friends, I’ve made no mark on the world. I’m just a smartass more interested in pets than people. My personality and my story will not send the masses to wipe tears and open checkbooks. My story and (lack of) pictures cannot combat and get attention for breast cancer awareness the way images of women doffing bras for the cause, funny dogs in bras, women pulling a warrior pose, and mothers afraid of not seeing their children grow up, can to get the public eye.

Of course, I am doing the thing I hate most: comparing cancers, getting into the cancer Olympics, who has it worse bullshit. I don’t have it bad—I participate in discounting, I “only” had stage 3, I “just” had a few side effects. Again, that comparison, who-has-it-worse, crap is a story for not just one, but two, future painful posts.

So why participate in all the “tell your cancer story” activity? I’ve admitted a few times here on this blog and other social media that at this point, this blog is mostly for self-therapy. And to lend a digital hand to others who have had or currently have cancer, who have similar crotchety views like mine—to let them know they are not alone—the way I felt in that post-treatment depression period. I’ve given up trying to convince those without cancer and those that embrace Pink-rah-rah-fight-like-a-girl stuff around to my way of thinking.

But then I think, perhaps the blandness, the ordinary-ness, of my story is in fact what is so horrific about it. Sure I had some family history—certainly not as much history as others I know of. I was just going along in my life, figuring cancer was a likely eventuality for me, although I expected blood pressure/cholesterol/heart disease issues first—that was the more common family history. Cancer would be my post-retirement issue.

I wonder what the non-cancer general public thinks when they see the trying-to-make-you-cry cancer ads. Do they hug their children, pause in momentary gratitude, and then move on, figuring “it won’t happen to me“? I mean, I sure thought that way. Even now, 5 years later, I’m still vaguely surprised I had cancer—that it happened to me. Shocking getting-cancer-young stories always happened to somebody else.

If I knew of a way to post a picture or to distill my cancer experience into a pithy quip or soundbite that would gather attention, that would combat the clichéd ads and pictures already creeping in before October, I would do it. But, I don’t believe in creating some pink boxing glove inspirational image, I have no tragic pictures or stories. All I have is an ordinary tale: I got cancer when I did not expect it; I elected to get treated; and now, so far so good. No heartstrings can be tugged—and I’m not the type that likes that kind of thing anyway.

Of course, it isn’t really that simple.

Cancer continues to have a profound impact on my life. Some of it is still physical; the tiredness unnatural for one in her 40s, the remnants of brain fog, the pain and tenderness to the point of abhorring touch on the breast that had cancer—and of course that dip where the nipple used to be. Much of the remaining impact is mental and emotional, and altered views—I won’t say cancer lessons. They are lessons, just not socially acceptable lessons—again, blog posts for future days.

I’m just so tired of cancer culture, especially breast cancer culture. And I’ve only loathed it for 5 years; I know there are other bloggers out there who’ve been criticizing this mess far longer—and so much of the culture remains unchanged.

At this point, my cancer experience is not one of inspiration, not one to tug any heartstrings—it just a story of weariness. It is not good copy for ads that get attention and money.

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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.

22 thoughts on “Heartstrings”

  1. I think the ordinariness of your story is what makes it important. Not all people who get cancer are mothers of small children or marathon runners, and thought their stories are important, so is yours and mine and everyone else’s.

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    1. Thanks Kym. I guess that is what I was trying to sort out here. Many of the scientific articles about unnecessary mastectomies point out that people don’t react to stats and facts, but to the personal story. And personal, tragic, extreme stories abound in cancer culture. It is hard enough as a patient to feel like a statistic, but I was feeling even more so–by not having the “personal story” that moves anyone. But I cannot help but wonder how my views would’ve been different, if I was aware of the sheer number of bland un-tragic stories in existence
      Just thoughts.

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  2. Ah, man….yes, yes, yes. I can’t say that breast cancer was a mere speed bump in my life, but I’m still here, able to work & pay my bills (mostly), laugh & have a life. I have no treatment pix either, unless you count the one where I am wearing my prosthesis on the outside of my clothes & showing off the Celtic knot tattoo I got on my leg because I was annoyed that the radiology techs got to tattoo me first. I didn’t lose my hair. I gained 20 pounds or so from the fatigue, but eventually lost it when I got more vertical. I think that’s what is hard about us ‘ordinary’ folks. I never really looked like I had cancer. But I still struggle with getting perspective on it. And I’m still tired. And that damn dog photo….Oh, that just begs for me to do a Photoshop lampoon of it…

    Glad you wrote this. xo, Kathi

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    1. Thanks Kathi. Oh no cancer was NOT a mere speed bump for me either, just the rash is-it-shingles-or-staph thing that delayed my radiation. Others I know had blood transfusions, delayed chemo, vomiting, multiple surgery and so on. Luckily I escaped that stuff.
      Oy yeah, the weight gain, and early menopause, I forgot that crap (I’m so used to breaking out in sweats I’ve finally learned to think it normal).
      Uh, please do a photoshop lampoon. This post was in response to another blogger suggesting people send Komen alternate pictures that prove cancer isn’t cute in protest. I just felt I could not do that–my story and pictures just won’t catch any eyes.
      Thanks as always for your comments–you always cheer me up! xoxo

      Liked by 1 person

  3. Thanks for this post. I’m with you on that whole weary of cancer culture thing… I am too, but I keep plugging away and I keep churning out blog posts and sometimes I do ask myself why. Many days, okay, for years now even, I wonder if we are all just beating up against a brick wall. I don’t have any profound story to tell either and I sure as heck have not had any cancer epiphany. But I do believe that everyone’s story matters, including yours. And I happen to believe that telling it like it is and sharing your cancer truths, whatever they might be, is inspirational. So you, my friend, are inspirational for sharing your “ordinary” story. You are inspirational to me. I know that.

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    1. Ugh, brick wall head banging, you know it! This summer some days I’ve had to “turn off” and not read some cancer stuff (bookmarked for later, which has created a whole ‘nother problem of backlog!).
      Thank you for your friendship, for YOUR story. In many ways, reading you blog, your grounded views back when I was fresh out of treatment and hot headed with anger at pink, have been MY inspiration for this whole blog thang I do! xoxox

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  4. Thank you for sharing your “ordinary” story but you are extraordinary to me. After our discussion on facebook yesterday, I’ve been thinking about what you were going to write so I’m glad it was the first thing that popped up when I opened my computer today.
    One thing your post made me think of is, what will my POV about all of this be in 5 years? 10 years? If I’m so lucky. Being just one year out from diagnosis, this is all still so fresh for me. I think that’s why I feel like I have a story to share, because I’m in the middle of writing it.
    I think that there are always going to be people who are amused, inspired, or feel a part of the whole “pink” thing. There’s nothing that we can do about that. But I still stand by my opinion that the extraordinary lies in the ordinary every day experiences of the cancer patient. It can happen to anyone. It can be stage 0 or stage 4. You can be young, you can be old. Big breast, small breast. It doesn’t discriminate. That’s why I suggested the “comeback” adds. It’s because of people like us. But, that’s just me. Maybe, one day, I won’t feel the same as I do now.
    Anyway, you’ve given me a lot to think about…great post!!!!

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    1. Ha ha, glad it was the first thing you saw in the AM. I was writing it Saturday, feel asleep watching TV (thanks cancer fatigue!), and couldn’t go to bed until I finished it. And that is the story of how it came to be you saw if first thing Sunday!
      It’s funny, since I started blogging several months after my treatment ended, I think I’ve not really told my story and my experience in a linear way. So many others have written the nastiness or unpretty aspects of each step of treatment–I felt no need to do that. I’ve told my thoughts and views about those things–but not in the order I thought them. If any of that makes sense.
      But yes, my 5 year out blogger self is different than the blogger I began, when my post treatment depression and my anger about pink were hotter and fresher.
      Now I’m just weary and jaded. But I’ll keep at it when I can.
      Thanks–glad you like my stuff!!

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  5. Thank you for your “ordinary” story. In reality, there are no ordinary stories, as we are all individuals, all different. Don’t worry about the lack of drama. Because mine was IBC, I had drama, you don’t want it! But, because I am neither cured (happy ending) or dead (sad ending), I just keep getting scans and taking meds, my story has become boring even if it started with drama. Not that I’m complaining – I’ll take boring over the alternative.
    Tiredness after breast cancer treatment? Gee, I think that is more common than running marathons. It just doesn’t make for good photo ops.
    I, too, am weary of the “cancer culture” stuff. If it went for research rather than awareness, I am sure I would feel differently.
    Dogs with balloons stuffed in bras are an insult to those with mastectomies. (And if I hear one more time I need to lighten up and get a sense of humour………) Just today, someone tried to drag me into one of those stupid awareness games on facebook. I have found when I explain why I do not participate in games or other pink activities, many people actually don’t even care if a real BC person feels hurt or offended, they just wanted to be involved in something “fun.”

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    1. Thank YOU Elizabeth! Ha ha, I wrote about the photo op runners being a bit detrimental a couple of posts ago–I encourage everyone to Take It Easy, Man!
      Oh man, I wasted too much time yesterday with someone on FB over this dog thing–and all I have to show for it is to know I get “butthurt” too easily (yep, I do, that insult actually doesn’t bother me). Yes, I did this in spite of claiming in this post I no longer try to get anyone around to my way of thinking. Guess I still take the bait some days. Oh well.
      Thanks as always for checking in.

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  6. I’d be interested to read your post about cancer competition stories. When I was first diagnosed I encountered an online war among different breast cancer patients. It started because one patient who was stage 4 stated that the “survivor didn’t have it bad.” I didn’t feel comfortable with that statement because my level of fear was at its worst and I was seeking emotional help. I understand some cases are more challenging than others, by far, but all experiences/cancer stages/ages matter.

    I wasn’t a fan of taking pics of myself during cancer either. I am more concerned about the culture in cancerland and the crazy expectations — both areas need a lot of attention (another reason why your voice is so important). I also believe your story is important because there are many people who are desperate to find a way to belong (you’ve given me that so thank you). Your experience makes those people, including myself, feel less alone.

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    1. Shudder–the competition stories are hard to write because of the ugliness, for one thing. Another issue is I must face my own pettiness, and another is the delicacy of calling out other cancer or illness communities for the comparison. I’m not sure I’m capable yet of writing these posts.

      That you feel less alone–that is all I ever wanted! I felt alone and began blogging to belong and it morphed into the hope others more recently diagnosed would have more things–my blog included–to find. Since then the reasons have expanded a bit more, but those core reasons are still there.

      So glad we found each other my friend.

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  7. OK, so as I read your post I kept thinking of points I want to make in response but then, reading what others have already posted, I realized I don’t have that much more to say. They took all my arguments!

    So, allow me to say this: people often look at me (stage 4 colon cancer, 5 surgeries between Oct 2011 and Aug 2014, currently in chemo now) and say, “You look so good!” I know what they mean, but I still bristle and think, “What am I supposed to look like?” Instead, I rely on humor and simply say, “I know; it’s like I tell my wife all the time: she’s so lucky, as I haven’t looked this good since high school!”

    People are expected to fill certain roles and, unfortunately, the image of the Breast Cancer Warrior is what has become accepted/acceptable. Allow me to simply reiterate: your reaction, your expression of self, your attitude is neither right nor wrong. It just is and, as with any other attitude/belief, it will piss someone off. The question is: do you really care what others think of you and, the corollary, does it really matter what other people say and do? I’m not so sure…

    Some quippy taglines to consider:

    Cancer – it ain’t just pink anymore.
    Cancer is color blind (thinking Benetton).
    I have cancer; be your own inspiration.
    I have cancer; that doesn’t make me your cause.
    I am a cancer patient, not your daily good deed.
    Cancer does not equal inspiration.
    Cancer – until you’ve had it, you don’t get it. (ooooo! i LIKE that one!)

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    1. Oooooo that last one IS good (rubbing my hands together in glee). And yeah the be your own inspiration–I hope you’ve watched Stella Young’s Ted Talk. brilliant.
      No it doesn’t matter what others think really, in terms of the personal. But as for my desire to make a change in the world, it is a bit different. Yes it is painful to see booby culture–dogs in bras being the latest thing–when I’ve had a minor breast surgery, and for so many women with complete breast amputation. It is more painful to know these images are used to “fight” the very thing that caused our scars. Yes it hurts us personally, but there are A LOT of us that hate it, and as a mass of women, I think that changes the game a bit. So trying to find a way to protest it seems worthwhile. So images of die-ins and of scars seem a viable way to protest it–it is just that my experience lacks a dramatic element–it is not click bait. Not that it is my “job” to come up with a different marketing campaign to make the public understand–but I cannot help but want to do that.
      Hope this is making sense. I’ll repost an angrier reaction and idea I had a couple of years ago–it makes more sense, I hope.
      Alan, so glad we found each other here in cancer blogger land!!

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      1. So, how do we leverage my brilliance?! I think I’d better do a post on that tagline ASAP. Just watched Stella. Thanks for sharing. And, YES, very cool to be friend here. Thank goodness for the Interweb!

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  8. You may feel that you’ve left no mark on the world, but you helped me process the similar feelings I’ve had about my own cancer. I’ve never blogged about my cancer, but now I wish I had. Just know there are a bunch of us who appreciate you.

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  9. You tug at my heartstrings because your feelings mirror the way I feel and I have a very far from normal existence. Other than my newly regrown hair and port scar, you’d never know I have breast cancer. I “don’t look sick.” (another phrase I hate). I hate the pink culture and am all for those of us who continue to jab at it. Keep writing and keep living my friend!

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    1. Thanks, ugh, at times, I do feel like a jerk for jabbing at the pink culture. It isn’t going to go away from griping, I realize that. But I can’t give tacit approval by not doing at least a little griping…

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  10. I really appreciate your writing and thoughts. I also hate the cancer culture, the pink nonsense and the commercialization. But it’s so hard to complain to people who really care about you, and are trying to be supportive when they call you their “warrior” and “inspiration.” So I try not to let my thoughts out there, and try to bite my tongue when my best friend tells me I need to improve my attitude. Damnit, I’ve had seven surgeries in nine months! A DVT! Two transfusions! Three bouts of C.Diff! A month in the hospital! But all I hear is “oh you look great, just the same as always. You must not have been very sick.” I don’t have the energy to argue. So coming here and to some of the other blogs really helps me to know that there are people out there who do understand. Thank you.

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