Maybe They’ll Listen This Time—Yeah, Right

There are so many issues worthy of discussion raised by the recent Keller mess. And most of the issues are being written about very well, and hopefully meaningful discussion can happen. But what makes me doubt it is that some of the issues are not really all that new to cancer patients. So, I am re-posting something I wrote a few months ago that is directly related to one aspect of this drama, before the drama even happened.

I know other bloggers have also written about this; I’ve seen such posts, I just cannot remember when or where I read them, so I cannot link them. I can only re-post what I wrote.

The main conceit of Emma Keller’s article is that she raises the question of oversharing via social media, seemingly without looking to see if this issue has been raised in cancer social media before. Does she really think cancer patients have not thought about this, written about this before, that she is the first person to consider this? (Eye roll.) How arrogant are these article commenters that tsk tsk cancer patients with their “if you make your illness public, expect controversy” type of criticisms? Very arrogant. I REPEAT: CANCER PATIENTS HAVE ALREADY THOUGHT ABOUT THIS, YOU ARE NOT TELLING US SOMETHING NEW. But of course the general public does not think cancer patients are able to think of any issues on our own—they must still think we do not research our disease and treatment options, given all the unsolicited advice they feel compelled to give. (Read the first paragraph of this re-post, and also see here for more on that.)

One last thing. It has been implied that cancer patients who share personal items so publicly must think we are immune to criticism because of our cancer, like we think our proverbial cancer cards give us a free pass. That would be an interesting thought—IF what the cancer patients were actually saying was being discussed. But given that not only Bill Keller, but MANY people, so totally and utterly got Adams wrong by calling her the standard bearer for warriors when the complete opposite is true, how can this criticism even be true? One cannot be criticized for something that one absolutely did not do!

Real discussion can only happen if listening (or fully reading everything, not “perusing”) is happening. All I see are people wanting to confirm preconceived notions. If some folks would read and listen to how cancer patients are debating the issue of using social media to discuss such personal matters, maybe they could cure some of their ignorance. Being anyone from an allegedly highly professional journalist to a person who thinks they are smart enough to make a comment does not grant immunity from being called out on the unwillingness to shut up, listen, and learn.

Original post link provided in title, to read comments if the reader cares to do so.

If You Don’t Approve of Preventative Mastectomy Don’t Get One

Posted on September 1, 2013 by Cancer Curmudgeon

When I recently came across yet another criticism of “unnecessary preventative mastectomy” I reacted angrily. It was on HuffPo, and the article wasn’t even about the preventative mastectomy or the decision to get one so much as the author describing her husband’s reaction, but of course a commenter started in about “unnecessary mastectomy”, thinking all these BRCA folks with their 90% chance of getting cancer just need a little vitamin D. Puhleeze, so tired of this nonsense—does it not occur to anyone that maybe the author did research, already knows and considered whatever tiny-ass piece of advice someone clearly without experience and knowledge—like that particular commenter—could offer? OK, tiny subsidiary rant over.

I am so tired of people judging others’ medical choices. If you don’t like preventative mastectomy, don’t get one. No one, not even other breast cancer patients, let alone anyone else, has any idea of the millions of little details of another’s situation, medical and otherwise, and therefore are never in a position to criticize the choices of others.

But then I think: by sharing her decision (this blogger had previously written about why she’d had the procedure) and writing about it—and by extension, when any of us who put our stories on the internet—are we inviting this judgment? I’m not suggesting anyone stop sharing, not by a long shot. While I’d like to shout at folks like the commenter, “how are any of our choices impacting you—it’s none of your business,” did we make it public business, by, ya know, sharing our business? She put her story out there and she should not expect only bravos and applause, nor should I, nor should anyone. People judge each other all the time, but do we have a reasonable expectation to have them shut their mouths, not share those judgments, when we publicize our choices?

I’m actually not asking a rhetorical question here.

As I consider this most recent fuss that has come into my line of vision, I revisit what makes me write my story and show my pictures. I put my story and my pic here and the complimentary comments are great—I do feel good when I get that support. And it hurt to be told one time in comments on HuffPo that ugly pictures of breast surgery scars should not be posted on the internet (this was during the Facebook kerfuffle).

I certainly am not providing advice about medical choices by sharing my information (see my About page), nor do I assume anyone else’s information or choices will work for me. The more I haunt the internet, the more I think every single case of breast cancer is totally unlike the next. But I like hearing about other options, about other experiences, and other opinions—it helps me think and process my own experience, my questions. For example, I know most breast cancer patients choose reconstruction.  In fact, I’m starting to feel like a freak more and more for just going with a lumpectomy. It seems everyone I read on the blogs had at least a mastectomy, usually double. I wanted to show–hey there are other options and that’s ok—we all don’t have to do the same. So I present my choice, how I got there and what happened with it, as just another experience or example, and maybe someone can benefit from knowing about it.

If I inspire, great, if not, great. I’m sure the folks who complained to Facebook about the SCAR project would just accuse me and my posting of my nippleless breast of being some attention seeking exhibitionist. If people think that, I cannot help it. All I know is, it took a long time for me to find images that matched what happened to me (as I’ve mentioned a few times on my blog, I was clumsy at searching cancer issues on the web for a long while). So the more photos of breast surgery examples there are out there for people to find, and if they can help someone else who is just now going through it, then good. I remember how alone I felt, and I remember the relief I got from seeing images similar to mine, when I finally found them. That is why I do it, it is that simple.

I think back to the woman mentioned above who criticized the influx of breast surgery scar photos on the internet, and her comment to me in which she claimed that if she ever got breast cancer she would deal with it with a positive attitude and not post her pictures on the internet. Funny, I once thought I’d never post pictures of myself either. It is impossible to know what you will do in any situation until you are absolutely faced with it. The blogger inspiring this post was indeed BRCA positive. I got the test planning that if it was positive—not realizing how unlikely that would be—I would just get a double mastectomy and be done with it. It wasn’t, obviously, but even now, I don’t know for certain that if I’d gotten a positive result I would’ve gone through with it. I cannot possibly know that unless it actually happened that way. I literally do not know what I would do in any other situation other than the ones I actually faced. If I cannot even know what I’d do with one little situational change—how can anyone have the temerity to call it an unnecessary mastectomy if they’ve never even been close to such a choice? And even if they were close enough—then they should know how awful the choice is, and why not judging others’ decisions is so important.

Ultimately I think it does not matter if the HuffPo blogger, or me, or anyone, posts our story for anyone to read. If I’d just kept the info quiet, restricted to a few IRL people, I would expect none of those people to tell me if they thought I was right or wrong in my choice—I may have shared my business but it’s still not their call. What does it matter if 15 people, or 1500, or a million people know what I did, no one has the right to question my judgment on medical decisions that impact me alone.

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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.

15 thoughts on “Maybe They’ll Listen This Time—Yeah, Right”

  1. I’m new to yor blog and I’m’ enjoying it. It’s helpful for me to remember that I was/am not alone in having to fend off all the “shoulds” from so many people who did not know what they were talking about.

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    1. Well I am so glad you found and like it! Glad it is helping you–that is one of the reasons it is here.
      Oh man, the “should” or “did you” folks…as if sorting through all the info given by a medical professional were not hard enough.
      Hope you like my posts, new and old!

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  2. Damn straight! When I made my decision to go the bilateral mastectomy, I talked with my good friend who seemed to not want to talk about how women make their choice of treatment, kind of like how people shouldn’t talk about politics or religion when they’re drinking. She didn’t want to discuss treatment choices.

    She had had breast cancer in her 30’s and chose the lumpectomy and radiation and when it recurred 30 years later, she chose the same treatment. I asked her ‘why’ and she just said that I would find that any breast cancer survivor will tell you that their choice of treatment is personal.

    I am so thankful for her sharing this information with me. Not that I would have been judgmental of others’ choices, I was just curious as to the ‘why’ and ‘how’ women make these different choices, even though I knew that my decision was the one I wanted right from the moment I heard the diagnosis and would not waiver no matter what.

    I am also thankful for the platform of blogs and facebook where we can share our stories. For me, my breast cancer blogging pals have taught me so much and I’m so grateful for them.

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    1. It IS personal, no doubt, and so complex. Once again you made me think of many things that will someday have to be their own post. I’ve been reluctant to discuss certain aspects of my surgery and how I decided, mainly because I do not feel like dredging up all those emotions. I will say for now, though, is that reading your friend’s story made me think about how so often in blogs I read, or wait, even as I was deciding what to do, it seems many women can do lumpectomy w/ radiation OR mastectomy and “get out of” radiation. I remember having a specific discussion about that, and being told I was absolutely going to have radiation, regardless of what I did surgically. Knowing my own weird mind now, I think I probably thought of it just like this: how can I “get out of” radiation, and since I could not, I thought well, just do the least invasive thing possible.
      Yes, I too am thankful to have found blogs–my only regret is not finding them sooner, as I’ve mentioned in various posts. Reading and writing in this space has made dealing with cancer post-treatment so much easier. While I’ll never be “over” cancer, it just has ceased to be the most difficult thing in my life.

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  3. All I will say is, I know I’ve helped more than one cancer patient with my explicit blog, and you know what, that is all that matters.

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    1. YES you have–I count myself among those you’ve helped, even though I was done with active treatment by the time I found cancer blogs. It is more about…I don’t want to say normalizing cancer, it will NEVER be normal…just making it less horrible in that the similar experiences are shared and understood by others, it just helps in ways I cannot express, exactly.
      I guess the thing I must often remind myself of is that for every tsk tsking commenter, there are many more who are grateful.

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  4. dear CC,

    I can’t begin to tell you how much your blog, and so many others have helped me. the sense of community, the sharing of stories (and photos that highlight our stories like nothing else can portray) are invaluable to validate and document the reality of what having cancer is about. no matter where we are in midst of cancer – as patients newly diagnosed, in treatment, dealing with the aftermath, taking up the call to being advocates, suffering recurrences, et. al – there are people who give us a safe place to land, to teach, to inspire, to comfort, to encourage, to rant on issues that give voice to what we recognize but might not have been able to articulate ourselves, and they and we are all the better for it.

    the age old bugaboos of being judgmental and critical about issues one knows nothing about because they either have not walked in our shoes, or, more alarming, haven’t taken time nor the opportunity to ask questions and listen carefully to get the proper insight from the best sources – US, WHAT WE WRITE ABOUT AND WHY WE WRITE ABOUT IT – is rampant and insidious, not just with the press, but with those we are surrounded with every single day. it’s just so sad and so frustrating that the public media just keeps reinforcing the very things that are so destructive and irresponsible and hurtful.

    the only answer I can think of is to keep writing, keep being up front and honest, keep calling out those who sensationalize issues with little substance, keep ranting, and keep being curmudgeonly.

    much love and light,

    Karen xoxo

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    1. I second dglassme!
      You make two VERY keen points: “…to validate and document the reality of what having cancer is about.” For me at least, that is a very important piece. My reality of what having cancer is about is definitely not what is shown on TV.
      Which brings me to you next keen point: “…so sad and so frustrating that the public media just keeps reinforcing the very things that are so destructive and irresponsible and hurtful.”
      I do wish, and often think about, a way to change that, but I agree, the only answer is to keep writing, I guess.
      And ha ha, yes, remain a curmudgeon!
      xoxox CC

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  5. Great post CC. In the 70’s here in the UK there was a woman called Mary Whitehouse who constantly complained about tv programmes corrupting us. I was a kid and I remember my dad saying “no-one forces you to watch it so stop trying to censor the rest of us!” I think the same is true today. No-one forces Keller or others of the same ilk to read our blogs, look at our photos or sign up for our twitter feeds. If you don’t like what we’re saying then read something else. What I know for sure is that every honest cancer blog is worth more than all the hospital literature, because the people who write that stuff have to cater for too broad an audience at too scant a level if detail. If you really want to understand what cancer does to someone’s mind, body and spirit, read a cancer blog. And given they think 1 in 3 of us will get cancer in our lifetimes, thank heavens some of us have the ability to write about it so others will not feel quite as alone with their confusion, fears and sadness. Keep writing!

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    1. So funny that you bring up the literature from the hospital or treatment centers. I still have so many brochures and I don’t ever remember taking them too seriously.It IS very generalized info that does not really give nitty gritty details. I finally found blogs that were more in line with my POV after I finished active treatment, and boy was I glad. I may have been “done”, but the writings I found helped me recover.
      Thanks, I will keep writing!

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  6. Such great points. Especially about being judged, which no one likes. What strikes me is the lack of context for these judgments. Until my culture, my age, my social and relationship status, my financial situation, the state of my health plan, and how long I can be off work etc etc etc, are all exactly the same as the person judging me, that person can’t know the reasons I chose as I did.

    The decision I made at age 59 might not have been the decision I might have made with the same diagnosis at age 29. With a full universal health plan (thanks Canada) and sick benefits, I had the luxury of deciding to undergo a year’s worth of treatment and quadruple mastectomy (same two breasts fully removed twice). Could I have done that without the supports in place? If I’d had a simpler type of cancer than the aggressive late stage Triple Negative, what choice might I have made?

    A diagnosis and genetic status are two pieces of information in the complex decision making involved in each person’s choices. It seems that judgment about what I or others ‘should’ have done reduces all the complex and diverse contexts of each life to a flatness of similarity that isn’t real. Thanks for pointing it out so well C.C.
    best wishes as always.

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