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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Chats with My Friend Greg

I learned of Ms. Keller’s essay via someone I follow on WordPress. I found Mr. Keller’s via my Tumblr buddy Greg, late Sunday night, while watching the Golden Globes (reading is a great way to tune out the more boring self-congratulatory speeches). Here is a link to Greg’s brief thoughts on a portion of this mess, via my added comments. I post this link because I value and treasure Greg’s thoughts and think them most worthy of reading, as I’ve done in the past. For those unfamiliar with past links I’ve posted, Greg is living with Stage 4 Prostate Cancer.

http://anotheronewiththecancer.tumblr.com/post/73239150634/further-thoughts-on-the-heroic-measures-article

So Let Me See If I Have This Right (In A Nutshell)

If you have breast cancer, and you dance around before your mastectomy for the willfully ignorant masses and post it online, you get to be hailed as an inspiration, and have mainstream media journalists proclaim your actions as THE way to do cancer.

But.

If you have breast cancer, Stage 4 no less, spend many years using social media to try to tell another side of cancer, the one the mainstream media will not show because it is ugly, involves the likelihood of death (“losing the battle”), the one that defies Pink, and you get not one, but two, insensitive op-eds written about you? You are called unethical? Judgment of you is called for and encouraged in regards to your behavior? And you are called a standard bearer for warrior culture when you’ve rejected the battle metaphors?

So, do I have this right?

Okay. Just checking.

Thanks, y’all. It’s been an eye-opener. Oh who am I kidding? No, it is not such a surprise as I step back and reflect (not reflexing, you know what I’m talking about). Same shit, different day, just more extreme.

Oh I’m Sorry, Is MY Life-Threatening Cancer Making YOU Uncomfortable?

There have a been a few times comments on my posts have made me think and made me want to expand on the idea into another post. I try to respond to all comments as best I can, and the discussions can be quite good. But I think maybe some folks don’t read the comments sections on blogs, which is a shame; I’ve found some of the best ideas, thoughts, and conversations in comments not only  on my blog but others. So sometimes it is a good idea to write a brand new post. I just haven’t done it before because of time constraints or I was on to some other topic, or I was just being lazy.

Swoosieque just made a comment on my previous post that made me think of an idea that is a small part of one of my motivations for blogging. This one motivation—among a few others very important to me—is to challenge the status quo of cancer culture and conversations. (Pssst, for those new to my blog, I don’t like Pink and all that rah-rah that goes with it, and I’m alone and surrounded by it in my rural area, so online, this blog, is a great way to rebel when smacking my head against the wall in dealing with people in real life gets to be too much.)

The previous post addresses one of the dumbass things people say to cancer patients. As I mentioned in that post, I’m not really interested in that topic anymore; I guess it just doesn’t bother me as much because there are so many other irritating aspects of cancer culture. But Swoosieque’s comment made me realize that maybe the dumbass things people say is a small part of the bigger picture, so I’ll address that big picture using the example of these dumbass things.

Swoosieque talked about (seriously, click over there and read our discussion) how she too was uncomfortable and did not know what to say to a person with cancer 27 years ago. Her larger point is about how, until she got cancer her own self, she just did not know what to say to cancer patients. I KNOW I’ve said dumb, maybe offensive, things to cancer patients my own self too, before I got cancer, and I wrote about it.

But that’s not really what I want to talk about. She pointed out that back then, cancer was not spoken of. That got me thinking. She is right, one of the points I hear in cancer conversations is that the taboos around cancer, especially regarding breast cancer, are now broken. We have indeed, as a society, come a long way.

But we have not come far enough.

I truly dislike it when anyone uses the argument or example of how “breast cancer used to never be spoken of, and look at it now”. Folks will point to all the damn Pink as evidence of how far we’ve come. While I dislike Brinker (and Komen and Pink), I agree with the sentiment behind a statement she once made, something along the lines of until breast cancer is eradicated, there is not enough Pink.

Well, I’ve had enough Pink thanks very much, (and I capitalize Pink to include the ribbons and all the party culture and whatnot it represents which I so dislike), but she is right—the conversation and research cannot stop just because we’ve come this far. Just because everyone is so “aware” of breast cancer (don’t even get me started on that topic today), what, we’re all done, problem solved? Excuse me, I still got breast cancer and am likely to get it again—problem NOT solved. While it may be impossible to cure cancer, at least any time soon, that does NOT mean attempts to do so, or at least to prolong life, improve effectiveness of treatment, make treatment less miserable, and so on, should just cease because, hey, look how far we’ve come!

I am of the same opinion regarding the dumbass things people say to cancer patients and the dumbass things they want to hear from cancer patients. Sure, cancer, breast cancer especially, is an acceptable topic even in TV shows now and maybe it wasn’t 20 years ago—but c’mon—that was 20 years ago! Society still cannot seem to get past a few tired old clichés. And I don’t know about others, but I heard the same cliché repeatedly over my treatment timeline, from people I barely knew AND from family members, multiple times from the same people, which kind of made me think everyone was being insincere. But I am sure they were being sincere. What I think is more likely is that while cancer is no longer taboo, it does not mean everyone is all that comfortable with it either. If they were, maybe we could get real and honest, and there would be no need for blogs, essays, and books about all the dumbass things people say. Because real conversations would be taking place, not trite phrases gently spoken to cancer patients so often that we can actually make a list of them (no I don’t have a list, I lost interest, do an internet search for the aforementioned blogs, essays, and books).

I remember once reading in a comments section (see what I mean that the best stuff is in comments?) of an essay that us cancer patients should not be so harsh towards our friends and others, because they too are new at dealing with it. I’ve addressed this before. And I get it, like I said above, I was one of those idiots who did not know what to say and got a harsh lesson by getting cancer my own self. This is one reason I’m driven to talk and write about it. The only way to get past this uncomfortableness is to start a conversation about it. The essay in question addressed how long cancer treatment takes (months!), and how friends and others tend to fall away because they, especially younger people, do not understand or have no experience with serious, long-lasting illnesses such as cancer. The essay introduced the topic, maybe the writer hoped to have a conversation that resulted in change, but that didn’t happen.  Instead of listening, some commenters got defensive. Yes, like I said, I was such an idiot once, so I will try not to be too harsh when I say that I can only understand the “I don’t know what to say” predicament so far. Yes it is hard to know what to say, how to act, but cancer is harder. I want to scream at the commenter, “Oh I’m sorry, is MY life-threatening cancer making YOU uncomfortable?” How can we ever get over this discomfort unless it is confronted?

I’m tired of the “well at least we’re talking about it” and the “treatments are much better now than they were” excuses. I’ve said many times and I will say it a million times more, I AM grateful for all the funding and awareness and so forth that kept me from dying because I was lucky enough to get cancer now, not 30 years ago. But my cancer experience was hardly cushy, and just because we’ve come this far, we should NOT stop. I want more and better (see my About page).

moar-cat

Remember how awesome TV dinners were—pop them in the oven for 45 minutes, go do something else while it cooks and presto! Dinner is served with little effort. Then along came microwaves. I bet women thought those hand operated washboard things were waaaay better than washing clothes in the river, and now we’ve got washing MACHINES. Whoa! Yes, I’m being absurd, but to make a point. There is always a better way and being satisfied with the status quo just leaves everyone in a rut. I want out of the rut.

Science IS still working on “better” for cancer care, why does society and culture lag behind? Sure, sure progress in culture may be objectionable to some. Thirty years ago Madonna was lewd at the VMAs and now we got Miley making Madonna look tame. Some would say that kind of cultural progression is not so good. I don’t care about that. I do care about bringing some honesty into the societal conversations around cancer, breaking out of the mold of overused clichés, only spewing positive, “inspirational” crap, and the idea that Pink is effective. I will continue to push to get real.

So dear Swoosieque, I thank you for making me think—I bet this did NOT go where you thought it would! Does not have much to do with what we were talking about, I guess, but good all the same. You inspired me to think differently about and address something that bothered me that until you came along, I just couldn’t put my finger on it. I think I said somewhere in our chat I’d write a short post. HA! Like I could ever do that. I remain, as ever, yours truly, the very long-winded, Cancer Curmudgeon.