Here is an experience I had back in 2005-06 that I keep reminding myself about, (on REPEAT):
I worked at a non-profit, running many monthly outreach film-based programs. I had a kids’ film thing at a local library. I used money from my budget to create thousands of paper(!) flyers for local elementary schools to distribute. I spent time convincing school officials to let me distribute them (each month–for some reason the permission didn’t stay in place), then getting the flyers to the schools. All this for just ONE of my several monthly events. I would get about 10 to 15 kids and their parents to attend. After a few months of what I considered out-sized effort for such ridiculous results, I stopped using the money and the time for the advertising efforts. After that, I think I got maybe 1, or 2 kids, to attend. Moral of the story: it takes A LOT of advertising/screaming-into-the-void to get even a little bit of attention.
I keep reminding myself of this frustrating episode from my life, over and over, lately. As I’ve pointed out many times here, I haven’t had time to write my own blogs, read others’ blogs, or participate, even a little bit, in the cancer community in which I was a minuscule, fringe part of in the years since I began this site. I don’t have the spoons, the emotional bandwidth. I think I popped in on Twitter a few weeks ago and found someone wondering if there is a hierarchy in cancer, and I just….navigated away. I’ve written about it extensively, others have written about it over and over. It’s not this person’s fault, they are likely new-ish to cancer, waking up to things I realized in my progression out from the first confusing years of treatment and moved on to dealing with aftermath. But I just get frustrated that we cannot move forward (see most any blog post I’ve written in recent years).
So I think back to my story and remind myself, with gritted teeth, that it takes mammoth effort to move forward even a millimeter. In fact, I repeated this story to someone involved in local politics, and I will tell this story in a speech I have to give in a few hours to local political activists.
Why do I tell this story here and now? Well, you might have noticed that we did not have a day set aside this Pinktober for #BreastCancerRealityCheck. It’s still going on, we still encourage everyone to use the hashtag. Primarily, we were unable to create a Thunderclap–the site was just not there. I personally was unable to get any of the comparable platforms to work (they kept kicking me out). Without that Thunderclap, and a concerted effort to get people to REALLY use the hashtag around the time the T-clap happens, well, I’m not seeing much use. Heck, I’m not even using it much. I’m having too much car and computer trouble and have been so distracted I don’t do more than the bare minimum of my volunteer activities.
Then I opened Twitter upon waking up on Saturday and saw No Bra Day trending. I know that the algorithm picks things it thinks a user wants to see–but I wasn’t even using my @curmudgeo account, I was using one of my political accounts. About an hour later it wasn’t popping up on any of my accounts, but my FB feed was full of outrage from my friends who hate the day. I toyed with re-posting my own screed against No Bra Day, but within seconds went into my “why bother we never move forward no matter how hard we scream” mode.
Earlier this week I stumbled across this picture and Banksy quote. I generally roll my eyes at inspirational quotes, but I liked this one. (The art is not Banksy’s, and the argument around even that, where I found the pic, just made me tired).
I’m not exactly resting right now–I cannot. I have too many obligations (not here in CancerLand) and too many personal troubles, I am unable to rest. But I remember that I must keep trying. I must be patient. A change in Cancer Culture will take longer than I can imagine. But that doesn’t mean I should just quit.
I cannot promise I’ll be involved as much as I like. As stated before, I’ve said nearly all I have to say about the horribleness that is cancer–I’ve said it repeatedly. But I encourage others to say their truth, their reality. Use #BreastCancerRealityCheck. There is so much bullshit out there–and we need to set the record straight. I’ll try if you try, OK?
A GIGANTIC thank you to all participants of Saturday’s Tweetstorm and/or Thunderclap!
While we did not get #BreastCancerRealityCheck trending, we did make an impact. Over 3,000 tweets last Saturday, far exceeding last year’s 1,000! We couldn’t have done it without you!
Of course, we (@barbieslosingit, @bccww, @abcdiagnosis) keep checking in on the hashtag in Twitter, and we are encouraged to see everyone keeping it going, continuing to share all the realities of this horrible disease we share. By continuing to shine a light on these realities, we remind the world that the sanitized story repeated adnauseam is FAR from the whole picture.
Keep sharing YOUR reality, don’t let anyone stop you. You are NOT being depressing, or merely complaining. You are telling YOUR truth, and letting others who may get sucker punched in the future with a diagnosis, that they will not be alone.
Now is the time, and the hour will soon be upon us. It is now up to you to make it happen!
What is the reality YOU want everyone to know?
I think about how the months from October 2010 to the end of 2012 were what I still call “the lost time”, because I was in treatment, and then dealing with depression and fatigue even after treatment ended in January 2012. An event from that time comes up in conversations, and I just don’t remember it–just one of the million little ways cancer still impacts me.
I think about how I celebrated the first time, somewhere in 2013, I was able to stay awake from about 7AM until the 11PM news without a nap (note I don’t say I got to watch the whole news program, I only made it to 11, ha ha).
I remember having insomnia, and reading to pass the night away, and found an article about how insomnia can cause cancer, which….gave me more insomnia.
I think about bigger issues, less personal stories, that are my personal pet peeves in cancer advocacy world. If I see one more BCAM tweet equating early detection with early prevention, I swear, my head will start spinning, Exorcist-style.
What are the realities YOU will share?
Flex those fingers hovering over keyboards and smart phones…
We cannot say we’ve exactly “enjoyed” reading all the tweets/stories that ARE your personal realities. Because, well, it sucks that any of us had cancer, it sucks we have to do this reality check to counter all the fairy tale stuff out there. But there is a lot of clever humor in some of your tweets. But most importantly, these tweets and stories remind us all that we are not alone.
That said, we cannot say that we exactly “look forward” to all your tweets during the hour-long tweets storm (10amPDT/1:00pmEDT/6:00pmBST), but we look forward to all the witty, funny, sometimes sad, community-building that will take place.
A Few Tips for Tomorrow:
While we all strive to get #BreastCancerRealityCheck THE trending hashtag for the hour (10amPDT/1:00pmEDT/6:00pmBST), we encourage everyone to use ONLY #BreastCancerRealityCheck in the tweets. Hashtags such as BreastCancerAwarenessMonth, ThinkPink, PinkIsNotACure are pretty well used!
Not going to be near social media at the appointed hour tomorrow? No sweat! Use Tweet Deck or some other dashboard application management tool and schedule tweets ahead!
Be real, be you. A reality check is about informing others what having this disease is REALLY like. We know some businesses will (again) see the hashtag and use it to shill pizza or something (yes, that happened). But that is not what this is about. Move beyond the dominate narrative, the crass cause marketing. Above all BE REAL.
Yesterday was a difficult day in America. To be honest, for the Ol’ Curmudgeon, everyday for the past year has been an overwhelming cascade of outrage after outrage. I’m stretched pretty thin, and admit–I don’t really “see” some of the Pink Nonsense that I recognize is irritating so many of you out there. See, I’ve seen it so much in the past 7 years that it seems like “old news”.
But I am reminded by so many of you–this is still VERY important. How can we expect to change the culture unless we keep up the pressure, unless we keep pointing out how wrong society gets cancer, unless we keep educating?
There is so much going on, it is like a ongoing din in the back of the brain. I write this with ALL my media turned off (I usually have at least some music on), just pure quiet, and I still hear the din in my mind. I imagine it is like this for many of you.
But I will shout and be heard above the noise, both in my head and the stuff coming at us from every device we own.
This still matters, too. My–OUR–friends are STILL dying from mets breast cancer, and every damn October that just gets buried under a lot of pink fluff and smiley races. I just..can’t…I refuse to shut up about it. My resolve is stronger than ever. How about you?
Join @barbieslosingit, @bccww, @abcdiagnosis, and yours truly Saturday. Sign up for the Thunderclap and then tweet out your reality using #BreastCancerRealityCheck
I sit here a few hours away from the start of Pinktober, hating myself for writing Pinktober, because all I wanna do is buy Halloween decorations, costumes, pumpkins, peruse candy selections, and put on my new purple-with-bats-on-it dress. I want to immerse in Halloween. In fact, in a few minutes I will watch The Wolf Man (the Universal classic Lon Chaney Jr. version of course) on some silly old-timers TV channel.
But I was reminded throughout the day that breast cancer awareness wants to quash my orange gourd dreams. And it has just been too hard for me to let that pass. Too many newly diagnosed cancer patients, too many people dying, too much crass opportunism profiting off of “my” disease. Too many brews and boobs events being advertised as I wander around town. Worse, a local support group sent out a newsletter referring to October as “our” favorite month of the year, since it is “our” month. I had to laugh, knowing so many friends who LOATHE it.
So we have to speak up, speak out, and try, TRY again, to inject some reality into this madness.
Stay tuned this week to sign up for our Thunderclap. We hope to get #BreastCancerRealityCheck trending next Saturday, October 7. We ask everyone tweet the heck out of the hashtag during the 30 minutes before and after the scheduled Thunderclap; hopefully the concentrated tweet storm will get reality trending.
We still need a #breastcancerrealitycheck. Let’s do it again. October 7, the first Saturday of the month. Let’s flood all social media #breastcancerrealitycheck. It worked last year, we got noticed (Huffpost UK and The Daily Mail). Let’s make even more people listen. We need to make people AWARE of the reality of this disease. We look forward to the day this is no longer relevant, but until then, we’ll do this annually.
Here are some reasons why we still #breastcancerrealitycheck need :
Because the myths of “early detection and/or mammograms save lives” still persists.
Because “awareness” of breast cancer is not enough, is NOT “saving lives”.
Because we lost too many friends in the past 12 months, since 1,430 people die of metastatic breast cancer each day around the WORLD
Because breast cancer is still not pink/fluffy/a party/an opportunity for anyone to use cause marketing to sell their brand.
Because breast cancer is over-sexualized and we are tired of seeing perfect, healthy breasts shoved in our faces to “call attention” during Breast Cancer Awareness Month
Because Pinktober threatens to suck all the joy out of Autumn: PSLs, jack-o-lanterns, tricks-or-treats, and drench the lovely colors of falling leaves in pepto-pink
What about you? Do you think Pinktober is real enough now—or still selling a fantasy?
Stay tuned to sign up for our Thunderclap and more details.
I’m just gonna copy and paste a 4 year old blog post here, I’m not gonna do much actual writing or work. Why is the Cancer Curmudgeon such a damn broken record? Because people don’t change, won’t GROW THE FUCK UP about breast cancer.
Well, some stuff changed. I’m kinda not raging about No Bra Day here so much as the fact those Facebook secret status games are popping up and annoying people. Not me–most of my FB friends are other cancer patients who hold my views. I’m not being superior–I just don’t make friends easily and my cancer tribe is small, but I love them fiercely. (Y’all know who you are.)
So yeah, I once suggested instead of no bra day how about what cancer really does to breasts day–baring one’s scars I guess some would consider immodest. Not me, I don’t care really.
I re-read this rant and was like, geez, I threw everything but the kitchen sink in here. I even see that I was toying with the warped warrior metaphors in cancer-speak. I don’t think the warrior language commonly used is realistic in actual military sense–but I’ll expand that notion later, I swear, I’ll get around to it soon.
But the 2 things I wanna highlight right now especially those newer in CancerLand–don’t be alarmed by all the women in “awareness” ads with strategically placed arms over their HEALTHY, non-cancer, breasts. Culture demands women be sexy in awareness ads, but women with scars cannot be sexy, they are reduced to being brave-strong-warriors with beatific smiles. Gag. Second thing, there will be a day again this year like last, a reality check day, we are planning, details coming soon. We WILL inject some reality into the fantasy our culture keeps insisting upon.
I wasn’t going to write about No Bra Day, because 1) so many other blogs I read have said most of what needs to be said, 2) why should I give it more exposure and attention, and 3) I wrote an overly long, overly wordy piece this summer already, back when there was this other No Bra Day (how many are there?!). The earlier piece, I Don’t Want to See It, is mostly crap I wish I had not written, only the final 5 or so paragraphs are worth reading, and some of the sentiment of those will be repeated here.
I changed my mind because as I started mentally ranting I realized that ignoring it won’t make it go away any more than giving it more attention will (more on this theory, keep reading). It deserves all the outrage that can be had.
Who the hell organizes these No Bra Days? There is no organizational name on that graphic (everyone has seen it I’m sure), so I guess it is just some idea someone passed around on Facebook (sorry, I still cannot have a FB page for personal, non-cancer related reasons, so I’m dim on Facebook things). How the hell does it benefit anyone? Don’t bullshit me and say it raises awareness, especially when the top line of the graphic reads “support breast cancer”. Sounds like the purpose of the day is to increase the incidence of breast cancer—the graphic doesn’t even bother to discuss support for patients in any way. It’s just another excuse to sexualize a disease, and to be childish and talk about boobies. Again.
What I am saying is divisive and angry; I know and do not care. I am so fond of the quote “just because you’re offended, doesn’t mean you’re right,” (Ricky Gervais) and I know that just because this event and the participants offend me, I’m not right. Lots of folks, including breast cancer patients, think all this is just fine, so it is doubtful that this event will cease to exist. But I AM offended and right or wrong, I’m going to gripe about it.
Setting healthy ta-tas “free” doesn’t support this breast cancer patient, again, not that this event even bothers to pretend to support any patients, it is supporting breast cancer, remember? It just reminds me of what cancer did to my breasts, and to other breasts. The scars, the ugliness, the pain and surgery. Need I go on? While I can begrudgingly accept that people who donate or participate in Pink have good hearts even if I hate Pink, I have NO appreciation for anyone involved in No Bra Day. Do NOT expect any gratitude or applause for the participation from me. I’m glad that these women are still healthy, still have breasts unmarred by cancer, but I really do not want to be reminded of what I lost. To those who organized this No Bra Day, I consider you insensitive, thoughtless jerks.
I know this day, the participants, and whoever organized it will get praise from many corners—but a quick scan on Google and other blogs gives evidence of some criticism about this event. I wish there more outrage about it. While I have no hope these days of the Pink machine slowing down, I yearn for more concrete ways to express my extreme dissatisfaction. This No Bra Day is one of the most egregious examples of how a disease has become the plaything of an adolescent, boobies obsessed culture. If I were rich, I’d buy a million very covering and very supportive bras and throw them—well, somewhere, since there is no physical headquarters for this idiotic nonsense. Maybe I’d just scatter them about a big city street, to stop traffic and get everyone to see how at least this one breast cancer patient really feels. Sure, that would just be me throwing a childish tantrum—but the organizers have proven that they are not emotionally or intellectually adult enough to understand the lengthy, smart essays criticizing the event.
Why doesn’t someone come up with a “What Cancer Really Does to Breasts Day”, gathering and presenting all the pictures of so many bloggers (myself included, I would do this) in various stages of lumpectomy/mastectomy, reconstruction or no reconstruction? There are certainly plenty of said pictures on the internet. I get why established groups or projects cannot do this—with establishment comes the need to “play nice”. Being a socially awkward, complaining Curmudgeon—in real life and in the blogosphere—means I seem unable to play nice.
I’m sure many would find a “What Cancer Really Does to Breasts Day” objectionable and offensive (see this is where I can use the Gervais quote to my advantage). But here’s the thing: not wearing bras, or even those “tasteful” Pink ads featuring topless, strategically covered, healthy-breasted models for that matter, do nothing to make anyone understand the reality of breast cancer—other than show off what to those who objectify boobies will be “missing” should cancer afflict any of these women. The current socially acceptable image of breast cancer is the bald-headed woman in a pink t-shirt at a run or walk, smiling and being strong. To me it’s like a sick before and after scenario: women before cancer can be sexy and flaunt naked breasts for cancer awareness, women after breast cancer surgery need to keep covered, need to become unsexy soldiers to admire for bravery, but not to be desired.
Seeing what breast cancer is capable of, and what women who’ve had scarring surgery are capable of, seems more logical and helpful to me. On a personal level, it certainly would’ve helped me when I was recovering from surgery and follow-up radiation, wondering what to do. Instead I saw bikini clad women in ta-ta breast cancer ads, and felt horrible, my emotional wound constantly re-opened.
I loathe the battle language in cancer, as I’ve mentioned often enough throughout my posts. What I hate most is that it is used mainly to blame “soldiers” who’ve “lost their battle with cancer” because they “didn’t fight hard enough.” I rarely see war talk applied in terms of a grand battle plan. Why isn’t it applied here? A good general goes into battle prepared, knowing as much about the enemy as possible—their weapons, strategies, the size and the location of the enemy, and what the enemy does to prisoners. Would it not make sense to show what the “enemy”, breast cancer, does to these “soldier” women? How can this proverbial “battle” be fought if everyone is refusing to acknowledge the “battle scars”? Oh right, we’re not supposed to be victims or prisoners, cancer happens to us, but there should be no lasting mental effects, and no one wants to see the scars (as the summertime fracas with Facebook and the surrounding conversations proved)—we either win or lose, and it’s all on us, even if the weapons (medicine) fail the soldiers, no matter how hard we fight. Yes I’m being sarcastic.
This mass delusion of only showing healthy breasts in regards to breast cancer has got to stop. Yes, it is good to think positive, to dream, and to champion the bright side of life—even if a Cancer Curmudgeon just won’t do that. But to completely ignore the reality, to not face the ugliness or pain cancer brings, I assure everyone, it doesn’t make the ugliness or pain cease to exist. Furthermore, wouldn’t seeing pictures of women ALIVE after scarring surgery be, I don’t know, positive? I remember being told on HuffPo this summer that these scars should not be shown. Hope she never has to go through it, hope she never has to see that ugliness in the mirror, hope she never needs to see my example of one who turned an ugly scar into a triumph.
I prefer to know what I’m up against and I’m tired of a socially acceptable conversation about cancer in which everyone covers their eyes and ears, singing “la la la”, like nothing bad ever happens. Sometimes, ignoring the bad stuff only results in a sucker punch later.
Only three types of people tell the truth: kids, drunk people, and anyone who is pissed the fuck off.” –Richard Pryor
Sometimes people don’t want to hear the truth because they don’t want their illusions destroyed. –Nietzsche