Tomorrow is the big day! There’s still time to sign up for the Thunderclap–if you already have, please ask your friends to join in!
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.
Click on image to sign up for Thunderclap!
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.
We have reached our threshold of 100 sign-ups for Saturday’s Thunderclap. That means at 10amPDT/1:00pmEDT/6:00pmBST your–our–message will be sent out into the world:
“Breast cancer stories are NEVER pink fairy tales. ~1,430 die per day. Tweet your truth! #BreastCancerRealityCheck
Y’all who’ve signed up just ROCK!
If you haven’t signed up yet, you still can, and please do! The more of us there are, the louder will shall be.
But it won’t stop there!!
For the hour after the tweet happens, tweet the heck out of the #BreastCancerRealityCheck with YOUR dose of reality.
We WILL be heard!
Again, we cannot thank everyone enough for joining in, for chiming in. We especially thank our friends over at The Underbelly for helping us get the word out–your support is EVERYTHING.
Saturday is just a few days away–the day we want to get #BreastCancerRealityCheck trending!!
Have you signed up for the Thunderclap yet? If not, what are you waiting for? We need AT LEAST 100 people to sign up, or the automated tweet/Facebook post will NOT happen. So sign up, and get your friends to sign up as well!
And get your reality stories ready to tweet out on Saturday as well. What would you like to see different in Breast Cancer Awareness Month? Now is the time to demand that change!
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
Join us for the Second Annual #BreastCancerRealityCheck Thunderclap campaign. In 2016 our message had a social media reach of over 200,000!
The #BreastCancerRealityCheck tweet: “Breast cancer stories are NEVER pink fairy tales. ~1,430 die per day. Tweet your truth!” will be sent out by the automated Thunderclap system at 10amPDT/1:00pmEDT/6:00pmBST on Saturday, October 7th from everyone who signs up.
Click image to sign-up for the Thunderclap!
The more people you sign up, the more ‘social media reach’ it gains as it will go out to all your followers–and maybe they will sign up and reach their followers, and so on…
Then There’s the Twitterstorm
After the automated Thunderclap tweet goes out on Saturday, October 7th it’s your turn to get tweeting!
For an hour, starting at 10amPDT/1:00pmEDT/6:00pmBST, please use #BreastCancerRealityCheck to FILL our timelines with info and personal stories that:
Move beyond superficial “raising awareness” to focus on more education and research that will SAVE LIVES
Dispel the myths about prevention and early detection
Reveal the candid realities of people (women and men) living with ALL stages of breast cancer
Provide less-known, harsh facts about secondary/metastatic breast cancer
One of Breast Cancer Awareness Month’s favorite ‘pink fairy tale’ messages is that early detection saves lives. But what most people still don’t know is 20-30% of all early stage breast cancer will become metastatic breast cancer. THAT is the killer.
You can do your part to help stop that killer. Sign up for the Thunderclap tweet campaign. Participate in the one-hour twitterstorm. And keep using the #BreastCancerRealityCheck hashtag for the rest of October and beyond!
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.
Source: etsy
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
Share anything you want about your cancer diagnosis (or your loved one’s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you’re comfortable sharing.
I went for my first ever mammogram in August of 2010. My maternal aunt had just been diagnosed with Stage 3 breast cancer. Her mother (my maternal grandmother) and aunt had had breast cancer as well. My grandmother was diagnosed with it as she was dying of heart disease, so was never treated for her cancer. Given that both my aunt and mother are on medications for blood pressure and heart issues, I always thought that was my bigger risk.
At any rate, that first mammogram received an “all clear” letter. A few weeks later I noticed my left nipple inverting. After a day of going to my new gynecologist (since the one who’d ordered the mammogram had suddenly left her position), and subjecting myself to numerous tests, well….turns out I wasn’t really “all clear”. On October 25, 2010 I learned via phone call I had breast cancer. An MRI ultimately proved it was about 5x6cm, biopsy proved it to be estrogen and progestogen negative, and HER2 positive.
I turned 39 years old on October 29, 2010. Starting in November had chemo, then surgery, then radiation (along with Herceptin infusions, simultaneously). I finished treatment in January 2010. I quit my 60+ hour a week main job to focus on my side hustle, and control my work load. I was exhausted
2.What is the most outrageous thing someone has said to you about your (or your loved one’s) cancer?
Someone told me just to “cut them off”. Ultimately I didn’t do that, I opted for lumpectomy. I’d often thought that about breast cancer patients before my own diagnosis. I found it harder to do when faced with the reality of it.
3.What is your biggest cancer pet peeve? I know it’s hard to choose, as there are many to pick from, right? But what irks you the most?
The sheer unwillingness of most people to understand and/or accept how complex cancer is. It’s not even the fact that people DON’T understand there are several types of breast cancer, not to mention the thousands of other kinds of cancers—it’s the fact they seem to glaze over or look at me like I’m lying when I try to explain E/P negative & HER2 positive. I remember being SHOCKED being in a room of about a dozen other women who had breast cancer, and when I introduced myself and stated my stage and kind of cancer, they had no idea what I was talking about! The nurse leading the seminar had to explain the different kinds of breast cancer. After that I pretty much gave up on local support groups—too uneducated and UNWILLING to learn.
4.What is something you want others to know specifically about breast cancer?
See above. And also, that it is a slog. A marathon not a sprint. It takes a year or so for treatment and then more time to recover from treatment. It ain’t the damn flu.
5.If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?
Always. I especially worry when I feel run down or “off”, like I have been lately. It gets hard to remind myself I’m probably just exhausted because of other stuff in life.
6.Do you feel cancer has made you a better person? Yes, I know this a loaded question. If you do, specifically in what way?
NOOOOOOO! It DID, however, release my inner Curmudgeon. Which is fine.
7.What is your favorite cancer book? (No, I’m not fishing for mentions of mine!)
The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee. Haven’t read many others. I listen to books more than reading these days. #dogwalkerlife
8.Besides your family, where do you turn for emotional support?
Online support more than anything. After all this time blogging, I’ve found my “tribe” of like-minded cancer patients, former and otherwise. A relief.
9.How many cancer blogs do you read and why do you read them?
I don’t know—less than I would like, and less frequently these days. Because I’ve turned to political activism lately, I lack the spoons I’ve had to be as involved in online cancer communities. I hope to return soon.
10.Do you call yourself an advocate? If so, what drives you?
I have a fraught relationship with the idea of calling myself an advocate. I see the work of folks at METUP and how many political and other ties people like that have, and I’m just like, yeah, I can’t do that. I write my blog, I fuss and throw a fit, I muddle along. I accepted the mantle finally last year when I helped bring the #breastcancerrealitycheck tweet storm to fruition. Yes, we’ll do it again this year—working on it now. Also, participating in my local Indivisible showed me how much I learned as a cancer “advocate”, so I realized that yeah, I am an advocate. Ha ha, those cancer lessons—always the crazy stuff with me. Never touchy-feely crap like “life is short, love everyone”. For me always scratchy-bleedy. Just the way I like it.
What drives me? Oh, nothing short of a complete overhaul of the way society thinks about cancer. That’s all, nothing much. HA!
OK, that is some stuff about me in a nutshell. Hope to back soon with more blogs describing the musings of this cranky-pants cancer patient.
Do NOT attempt to keep repealing The Patient Protection and Affordable Care Act. Yes I used the real name, to remind us all what it was meant to do, even though, yes, it failed on some counts (more on that in a minute). I will NOT use the nickname everyone uses derisively, although I am forever grateful to that president.
I am tired. I am tired of living on tenterhooks. I am tired of my phone buzzing with various news alerts, and the constant notifications of tweets by Andy Slavitt, Sarah Kliff, and others fighting the good fight, explaining what the hell is happening, how it will impact regular and poor Americans like me. I’m tired of worrying ALL OF THE TIME.
I know, I know. I could turn off phone notifications. I don’t have to wade into Twitter, to be so involved. For starters, I am utterly dependent on ACA remaining the “law of the land” and I do not have the luxury of tuning out. I worry when the notifications are NOT happening too. I have to remain involved and engaged, to do whatever I can, no matter how small. It is frustrating I cannot do more—I would’ve been in Annapolis or D.C. today for Lives on the Line, but I have to work. That’s the breaks you are poor, you are a member of the gig economy and you have to hustle all the time. I just want to slap people who tell me to “turn it off” for a bit. I always notice the people who say that to me can afford health insurance, can afford my services, can afford to go on vacation.
And frankly I am proud to be involved even the little bit I can. I get up every morning and search the news and tweets. And it is horrible. Then I write the tweets for my local Indivisible group. I want to do this; NEED to do it. Because I’d be reading that stuff anyway—might as well use it, make a small contribution.
Since November I have not had one night of sleep in which I did not keep my mouth so clenched I did not wake up with a headache. The past few months have been alarmingly like the two weeks in early 2014, when the new imaging center I used thought I had a recurrence. That wait for the MRI, then the wait for the results–agony. I could barely function. The only thing different now is I’ve learned how to function a little bit.
But I am always in a shitty mood.
There was a tiny bit of reprieve early Friday morning, when 3 Senators voted no. And nearly 48 hours later yet another, a new proposal is being floated to once again repeal the ACA. On top of that, as I write this, the wanna-be Dictator is threatening to de-stabilize the insurance market. Does anyone even understand they are playing with our lives?
THIS. IS. NOT. A. GAME. You all are threatening my life. And I don’t just mean “life”—why is death always the metric. I mean how I die, with a roof over my head because debt hasn’t rendered me homeless.
I’ve written on this blog a little bit about heart disease—readers will know my family has a history of heart disease. My maternal grandmother was diagnosed with breast cancer (left untreated) while she was dying of heart disease. This was one of the reasons I was so blindsided by my own diagnosis. I get frustrated that women’s heart disease awareness movements “use” breast cancer to prove that heart disease is the bigger killer. But right now, I’m thinking this stress will give me a heart attack, maybe I should worry about cancer less? Will I survive a heart attack? What with all the heart damage Herceptin gave me?
The constant stress this administration causes me might kill me, and I’m not being hyperbolic, I HATE hyperbole (though I’ve had to use it lately). Maybe that is the plan—then I guess I won’t care if the ACA gets repealed.
And to be clear, it is this constant living in limbo that I’m speaking of here right now. I’m not even going to touch on the other stuff happening that is giving me worry—the threats to freedom of the press, the clear direction to authoritarianism that we are taking, my very real fear that the American democratic experiment is ending.
So I beg this Congress, stop it. Be the deliberative body you are supposed to be. Who do you serve, WHY do you serve? It isn’t supposed to be about “winning at all costs”, it’s supposed to be about serving us, The People. When so many people are telling you they will hurt—LISTEN TO US.
Yes, I know the ACA hurt many people. So figure out a way to fix it. I cannot believe I am advocating for, or defending insurance companies—the people I fight with on behalf of a provider (as a medical biller). There is a great deal of work to do, so stop with the shit-proposals. Find the way. You are supposed to be smart.
So please, Members of Congress, hear my plea. I want to live. I’ve lived through cancer, I know how much it costs (yep, even before the ACA it was too expensive—Obama didn’t cause that, greed did, read some literature about this). If my cancer comes back, especially metastatic, I’d like to live as long as I can, at least comfortably. I’d like to NOT bankrupt my family. Everyone threatened about government death panels back when the ACA was being written, remember that? Do you even understand that YOU have become the death panel now?
anotheronewiththecancer 