Institutional Knowledge

I’ve been trying to put my finger on the word or phrase to describe the accumulation of common, shared knowledge that comes to a cancer patient participating in one or more social media platforms. I hesitate to use “institutional” when it comes to breast cancer, because it implies the normalcy, the rite-of-passage vibe that surrounds breast cancer, and I hate that—I do not want breast cancer to be thought of as “normal”, as just another step in a woman’s life. It should not be a step for anyone. But institutional knowledge seems the best fit.

The need to describe this shared knowledge among breast cancer patients has been growing for me, but hit a turning point early in 2015 (yes, it takes me a long time to finish some posts, this one a good example). A friend was urging me to enter one of my blog posts into a local writing competition. Every time we began to discuss revisions and editing needed for a particular piece, it became apparent that I would have to add too many sentences (instead of cutting!) to explain a point to people with no knowledge of the issues that continually get debated in breast cancer social medial circles. You know, the mammogram debate, the divisiveness of the pink ribbon and of warrior language, the backlash to Pinktober and sexualization of a disease, and so on. I write my blog for a very narrow target audience: cancer patients or caregivers who generally have similar views; I don’t often bother to even try to persuade anyone to my way of thinking. I’ve generally written posts merely to commiserate with the like-minded. I was too impatient (and still am), and simply did not think it worth my time to revamp an old post so a panel of judges would be informed of the background, the institutional knowledge, needed to understand any of my points.

However, I think there is a slow realization in society about cancer patients’ discomfort with certain social habits that have themselves become institutions. I noted in a few posts in the last year that a local walk for breast cancer added the sub-slogan “a fun event for a serious cause”, resulting I suspect from so many bloggers writing about how tired we are of these fundraisers looking like a celebration. Is the tide turning?

I was delighted last year, along with many cancer patients, to hear about the Empathy Cards. Listening to a segment about them on an NPR podcast while walking a dog caused me to stop and laugh out loud when the reporter said, “There’s apparently a long list of things that people who are struggling with a serious illness do not want to hear.” (Yes, the dog stopped and looked up at me, puzzled.) Her weird “wow-this-is-news-to-me” tone while delivering that line, and the use of the word “apparently”, caused me to imagine a befuddled smile on her face, and that was why I laughed so hard. Take a listen  maybe you won’t hear it the same way—it’s just how I heard it.

To be fair, before I had cancer, I never imagined how awful about 99% of the things said to cancer patients sound to those patients—yes, things I was guilty of saying myself. One of those awful, socially UNacceptable lessons I got from cancer was the eye-opener of how little society has progressed when it comes to cancer/death conversations. As I’ve noted in old posts, I’d like others to learn this lesson (the lesson of Dumb Shit Said to Cancer Patients), but without having to get cancer. Of course now that I’ve had cancer I see there are several books and essays about the subject, but generally those things will only be read by a very small audience already familiar with the topic. Something like a radio segment on Empathy Cards is far more likely to get the attention of those who have never had cause to consider the topic. Or maybe not.

So perhaps the local race organizers and NPR listeners are finally getting it, but that still leaves a large swath of society that is still, not just ignorant, but stuck in a mindset that has not progressed. OK fair enough—people not directly impacted by cancer can maybe have a slight excuse. But medical/oncology organizations, those doing any kind of fundraising, NO! They do NOT get a free pass. The time for this ignorance is over.

I first started pondering this lame ignorance whenever some porn-type of group would do a promo to “raise awareness for breast cancer because everyone loves boobies”. Think Hustler models jumping out of planes while topless or that stupid Coke bottle thing. When some in the breast cancer advocacy sector took these things to task, the porn industry types got all screechy-defensive, the same old excuses: my (insert old relative) has breast cancer and she thinks this is fine, or how dare you criticize us when we want to help you/you’re biting the hand that feeds. While I find these things inexcusable, the cynic in me realizes that these types of viral promos will continue because it has more to do with self-promotion than helping us.

What about the organizations with awful names, some founded by actual breast cancer patients/survivors, like Save the Ta-Tas, Coppafeel, Feel Your Boobies? In short, I hate them. I don’t care how honest and pure their motives are. I hate the excuse of using “light” “humor” to reach “younger” audiences. Not all young people fall for this insulting pandering to their alleged sensibilities (read it, if nothing else).  I know some breast cancer patients love these organizations, don’t have a problem with these names. But I do. And again, the cynic in me thinks the titillating names were chosen BECAUSE so many of us object to the names. Hey, free publicity when we bitch about it, right? For that reason, I end this paragraph here and do not provide links to their shit websites, or even use the names in tags. Plus I’m too angry to be coherent.

The lines get blurry as I move on. Remember the partnership between Young Survivor Coalition—a group I’m aware many hold in high esteem, but I don’t because I’m sick of the age division thing, ugh, whole ‘nother story—and Spencer’s with their “boobies make me smile” bracelets? How could YSC not know that there has long been grumbling within the cancer community about sexualization of a disease? I don’t remember much of what happened during this relatively recent fracas. I had to look it up, to make sure I was remembering correctly that it was indeed YSC, and I was right, the link to Spencer’s is still on their site. Lesson NOT learned I guess.

The ad campaign that most frustrates me these days however is American Cancer Society’s. Lots of bloggers have spoken out about it, particularly the war metaphors. Personally I cannot tolerate the silly anthropomorphization of cancer. But the point is, the criticism of the war metaphors has been going on for quite some time—before I got cancer for sure, and became awake to it—there are studies about it, and yes *sigh* I’m sure there are studies showing the positive side to it (Respect and Reciprocity). Not interested in a battle of citing and linking studies. The point is, ACS should be sensitive to the community it is serving/using-to-fundraise. How could they not know about this ongoing discussion? Or did they know and figure that it is just a small portion, a few grumblers? And maybe it is just a small group of us, and my POV is skewed because I mostly follow and chat with those with my same view? I don’t know. Am I wrong here?

The thing is though, it isn’t just fundraising/support organizations. The language or habits are so entrenched I don’t even think the medical community even gets it. Just yesterday I kept seeing a piece from Dana-Farber about fighting women’s cancer from within. Fight, not treat—how did those words swap? I am baffled. Hell, here’s an awful anecdote. When I started going to my local support group of other young(er) women with cancer, a patient navigator/nurse/social worker led the group. I remember two of us pointing out the offensiveness of phrases like “save the ta-tas”. What about saving our lives, we said. She said she’d never thought of like that. Granted, the group had only existed about a year before I joined, but damn! She’s in a cancer treatment center with tons of patients every day—how? What? Again, baffled.

There are other examples of course. There was a major cancer center that put up an offensive billboard last year, I think, implying those dying of cancer did not fight hard enough. My memory is fuzzy, and I’m just too worn out now to look it up and provide a link. If anyone remembers, put a link in the comments, please, would you? Hell, there may be more than one and my chemo addled brain is mashing stuff up. It is all too much for one person to keep track of—or at least for this person.

But this brings me to another, uncomfortable point: there is a need for some kind of cancer history lesson. I’m not talking about a book about the nuts, bolts, and science—although that is a pretty good start. As much as I love books and film (before my attention span was wrecked, that is, thanks cancer!), even great things like “Pink Ribbon Blues” or the “Pink Ribbons, Inc.” book and film are already almost hopelessly dated. Not knocking them, they are good jumping off points, to be sure. But a more up to the minute solution is needed. And a way to alert the newly annoyed (whoops I mean diagnosed but not a Pink fan) to these things. Let me explain.

When I was diagnosed I was overwhelmed, and all these “resources” were handed to me; brochures, cards with numbers for mentor systems, bags with “goodies”, and for me it was just too much to take. I suspect this is the case for many others. As I progressed in treatment, I grew more uncomfortable with the “be positive”, run-a-pink-race crap. What I needed was some fellow outcast to approach me back by the dumpsters or something, secretive like a resistance member or some stupid Hollywood thing, and push me in the direction of others that held my disgruntled views. Oh I know, I know, it isn’t that hard, just Google stuff, Curmudgeon! But back then, as mentioned before, I didn’t use the internet/social media for much other than my work. But it did take me a day or so to keep searching things like “I hate pink” to finally stumble on the bloggers who had been at this grousing thing for a long while. And still, even 4 years later, I am not aware of every piece of criticism leveled at the very things I despise in cancer culture. Just yesterday I ran across a news article about Ehrenreich’s legendary article/chapter that thoroughly rips Pink a new one—and the article was published before I was even diagnosed. See what I mean?

TL;DR version: this shit has been going on a loooooong time.

I constantly run into women angry and fired up like I once was—or I used to before I had to back away from some of the social media a couple of months ago to keep sane. I pointed out to one person, maybe not as nicely as I should’ve, that the White House has been lit up pink every October for many, many years, there was no reason for her to act like it was a brand new outrage. She fired back at me in such a way that I interpreted it as: well, if I’d known about it so long, why had I, personally, not done more about it? The answer to that is, for me at this stage in the game, the lights are a symptom, not the whole problem. Telling anyone to stop with the lit up buildings without making them understand the big cultural picture of why we hate it so much is useless. Or maybe I’m just too tired.

What I’m saying is, every outrage that happens in the cancer community has probably happened before. My early posts on this blog were so full of vigor, I wonder if some of the older (not in age, but as in time spent in CancerLand) bloggers laughed at me–tho’ I doubt many were reading. I’m glad they never said anything to me. I just sigh when I read newer bloggers work through all this mess. In that support group in the early days, I fussed and fought, and got a pat on the head, “I was like you once,” and that sucks. Lately I find myself thinking, yeah, this was just like that time the Kellers came after Adams, or this is like that time Kohl’s and Komen did that extremely stupid elephant thing.

This isn’t limited to cancer cultural issues either. Every few months the mammogram debate rears its ugly head. Just yesterday I read a new piece about combating the over-treatment, unnecessary double mastectomy “epidemic”. This recent article did not use that word, but oh yeah, it has been used—in Orenstein’s 2014 NYT article. Same old reactions, though. I wonder if the next time I read about either too many mammograms or too many mastectomies I will finally have lost it too many times and will start laughing and crying without end.

I’m not good at proposing solutions—I’m a Curmudgeon, a griper. So while I have an idea, I doubt it will work. But here is my fantasy anyway. We need like a Wiki style site that keeps up with all these little cultural things. A quick reference guide that anyone can just pop a link into their piece. For example, anyone reading this very post who might not know about the Kellergate event because they were diagnosed after early 2014—well, presto! I’d have that link in there and they could get the details and know what the hell I’m rambling about. Or it could have longer and longer explanations about the various reasons some of us loathe war metaphors, or hate the way sex sells breast cancer, or how metsters have been generally ignored in the larger pink awareness mess that has been going on for years (or what in fact a metster is—because still some new cancer patients are apparently not told about the risk of metastasis, scary in itself). And maybe this wiki thing can contain every piece written about the mammography debate so it will become clear just how ridiculous the problem has become and why the hell I’m so tired of hearing about it when I never hear of a better way, dammit. Seriously, how many articles claiming mammograms aren’t great and how many articles are there proposing a better method? Yeah that’s what I thought.

Now does everyone see why I’m so tired? Cancer culture is repetitious to the point of being so boring I cannot take it.

Look, it is great so many women out there can still yell things like “cancer is NOT a pink party”. I cannot. It isn’t because I’m suddenly pro-pink, I’m just beyond that slogan and sometimes forget that everyone is not in the same place as I am. I forget it still needs to be yelled because most of society just does NOT get it. In general I dislike slogans anyway. I get it—things like “fight like a girl” get the attention so those of us on “the other side” need a slogan or quip to get attention too—but eventually it just becomes slogan, retaliating slogan, and on and on—and it just ain’t the way to have a real meaningful conversation that results in progress. And I need some progress—because as I keep saying: I’m tired, I’m bored, I’m angry but not in the same way I was when I first got here to CancerLand.

It is too much to expect the newest CancerLand residents to be aware of all that has gone on before, why should they keep up with this stuff—I sure as hell didn’t read much about cancer before. But there has to be a way to get everyone up to speed, quickly, easily.

I say for the bazillionth time, I’m tired. If someone has a feasible solution, I’m all ears. But if there is a need for the person to stand behind the dumpsters to locate the new patients struggling with the Pink and positive crap and point them to those of us whose blogs can maybe give them some solace–well, I can do that probably.

 

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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.

11 thoughts on “Institutional Knowledge”

  1. Oh, gawd…all I can say is, me, too. Thank you for articulating the collective weariness of so many of us long-time bloggers and grumblers. I’ve said the same things about all this crap so many times, I could just keep re-posting older blog posts and they’d still probably be relevant for decades. I don’t know what the solution is, except that it often strikes me, not just in this realm, but in all cultural realms, that we humans are awfully slow learners, rife with knee-jerk reactions, rather than considered responses, clinging to our cherished beliefs, no matter how often they are disproved. I had a chemistry professor once who said we humans are ‘good’ at technology, but pitiful at genuine intellectual progress. *sigh*

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    1. Oh I knew I left some point out–the re-posting of old blog posts–ugh, a thing I’ve done so much it is ridiculous!
      Yes, YOU are one of the ones whose blogs helped me when I stumbled into it. And yes I recognize it takes society a long time to change. Culturally we adapt quickly to technology–look how fast selfie became a thing, yet we’re stuck in the same patterns when talking about illness. But that is why the fund raiser orgs and the medical/cancer centers should no longer get a free pass. Unless they are phenomenally stupid, they have to know about the unease with the war talk, the sexualization issues, and should be avoiding or addressing, rather than just going with the flow.

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  2. Hi CC,
    I hear you. Boy do I. I tell myself over and over that on any given day there might be someone out there who has one of those light-bulb moments and voila, suddenly our messages about all this crap sink in. Or there’s a newbie struggling with the over-the-top pink none sense looking for some sane advice (hope that doesn’t sound arrogant). And you know me, as a teacher I have to keep at it. I guess persistence is something all educators are familiar with and aim for. But we also know about butting our heads against brick walls, burn out and countless other stumbling blocks. And yes, I get frustrated sometimes with the newbies who make me feel like they are the first to stumble upon some of this stuff – those walls… I do know that when the major cancer centers start spewing unrealistic BS in their ads (that billboard post was mine, btw), that is what really gripes me most. Ugh… I love your fantasy about meeting newbies who are struggling with the pink crap behind the dumpster and pointing them in the direction of other like-minded thinkers. That’s priceless. I guess we all just have to do what we feel up to doing and this changes from day to day. My fantasy (one of them) is to gather some of the blog posts from like-minded bloggers together in one PDF and have it available for newbies and others Or even doing this with my own posts and coming up with some catchy title. But being a horribly unorganized person, not to mention tired one, the task feels too monumental. Anyway, great read. Thank you.

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    1. And I envy you your patience–that is one thing I had little of, and post-cancer, it’s just gone!
      I went to all the “predictable” sites upon DX, I mean, there are endless resources for breast cancer patients, but so much of it is in the same vein! I remember thinking, fatefully in October 2012, after treatment was over and the Pink was drowning me–I had to use specific search terms to get to say your blog, or Kathi’s (I just didn’t know who either of you were back then). Just entering pink or breast cancer, and mostly Google shows things to buy (how funny–NOT). True, I didn’t suffer for like days or weeks when I really started looking, but still, obviously any grumbly type opinions are just not as available. And THAT is what needs to change. Add in stuff like how much conversation there was about say, the dancing mastectomy woman, mostly searches will put out the “she is great, doing cancer right” stuff. I cannot imagine having to cope with that as a newbie. Shudder.
      So yeah, and alternate Wikipedia entry is what we need, so we can keep it up to date–but more importantly, the medical/cancer industry has to be more sensitive to the grumbler patient. Yes, the other morning I realized it was 2 things you spoke about: 1-the blog post about a billboard, and 2-a Facebook post about a major hospital website suggesting patients use their cancer as a learning opportunity–I conflated the 2 things in my head. I should write and addendum…tho’ I already did write about how bad the cancer centers are at this stuff. I actually see this as a serious problem.

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  3. I often feel like we have doctorates in “breast cancer studies” but have to teach remedial 100-level courses, year after year, because there is a never-ending supply of fresh-faced freshmen needing to have their eyes opened for the first time. And it’s not fair to expect them to have all the knowledge that years of lived experience has gotten us, but damn if it’s not exhausting.

    Realistically, there probably IS something to be learned from professors of women’s studies and race relations and all the topics that increase in complexity the more you learn. I like to think (or at least desperately want to believe) that over time more of these ideas seep into the world and into popular knowledge. We can only hope that each year the students come in with a teeny bit more exposure to the truth of things than last year’s crop. In the meantime… It’s a long, painful slog.

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    1. Great way to frame it–cancer 101! And yes, cancer-as-slog, oh boy have I said that a few times. Of course Sulik’s book is sort of a cancer studies book, but stuff happens constantly, so updating is always needed. The thing with the Kellers definitely reached a larger group of people than just cancer patients, so maybe that exposed a bit. But like I said to Nancy, cancer centers just push the dominate narrative–there needs to be a way to reach those patients that are not helped by that line of thought. Sigh.
      Thanks for reading!

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  4. Hi all. I am from New Zealand, 18 months on from the bombshell that is a breast cancer diagnosis. I find it incredibly useful when bloggers share who they are following and also when they comment on each others posts. In this way I been able to find my own kind of online support group. Thanks for writing.

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    1. Thanks for reading! Precisely what I did–just read blogs and started checking out comments on the blogs and went from there. Still have not found the best way to keep track of everyone, so I miss some good stuff-there is so much of it out there!!

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