Month: September 2016

Complaining, Commiserating, and….Convincing?

my_logoComplaining doesn’t change anything, only actions make change. Be the change you want to see in the world.

I see these types of phrases tossed around a bit in Pinktober. Last year seemed to me particularly harsh in terms of those folks who embrace Pink (breast cancer patients, relatives, and patients with other cancers who resent the attention breast cancer gets) harshly reacting to any criticism of Pink. We should just be grateful, or “do something” to change this Pink nonsense if we don’t like it, I often read.

I surprise no one by saying that many folks find change difficult. Even those who say they like it, often don’t actively change as much as they could (yours truly falls in that category more often than I’d like). Cultural change is especially hard, even harder when most of society thinks everything is hunky dory.

I confess when I began this blog nearly four years ago I was all fired up—I was so excited to see other blogs criticizing the dominant Pink narrative, I added my voice and I thought surely, SURELY, the general public would HEAR US and begin to SEE. Ah, so young at age 40, wasn’t I?

OK fine, at least I found others who understood, even if the world ignored us and kept right on pouring Pink all over everything. So this blog mostly became a place for me to complain, and I hoped a place for like-minded patients to read my thoughts and feel a bit less alone, and to say so. Complaining and commiserating, that’s the ticket.

That said, I’ve often taken it a bit personally when I’ve read blogs or essays or even comments critical of the backlash to Pink—a backlash to the backlash I guess I’d call such pieces. Hell, I’ve even actually been called out once or twice, challenged to stop complaining and “do something”, though that “something” has never been specified.

I’ve said here and in other places that I do not consider myself an advocate. I am wary of that word. There are many leaders in the breast cancer community doing “real” work—going to health or cancer symposiums and the like. Still others know influential people and politicians and work hard to challenge and change laws. I would not be any good at either. My grasp on the science and medical knowledge to attend cancer seminars is tenuous at best. My patience and diplomatic skills are slim to none. And my primary interest in all of this anyway is the sociology of it all—why the hell society behaves this way, accepts Pink each year.

But how does one change culture? What can I possibly do? Nothing, I’ve told myself. Cultural change is too tricky and there are no measurable outcomes that make a big, earth-shaking impact. No new laws passed; no new treatment discovered, no change in medical protocols. So why bother? Do I like ramming my head into a wall?

But a challenge I heard recently and keep coming back to is this: how will people know why this Pink crap makes us crazy if we don’t tell them? Yes, there is a part of me that still is resistant here—after all, not long ago I wrote a post about how I refuse to provide a list of “cancer patient approved things that are OK to say to cancer patients”. I still hold that point of view (hint, because if people listen—they will KNOW what to say to their individual patient, and most importantly, what is OK to say to one of us will be horrible for another of us).

This year I just cannot bear another round of “Awareness”. This year, I will explain to anyone who will listen that Pinktober has become stagnant, we need to evolve from mere awareness to education, to full understanding of the even less-than-rah-rah-cheerful facts of breast cancer.

I start today, October 1, with our #BreastCancerRealityCheck✅ campaign. When asked, if you don’t like something, why don’t you change it, I have an answer. I AM trying to change it. Things are not hunky dory with the same tired old Pinktober. I will tell you all about it. I hope others do too. My question now to those call those of us who criticize Pink “complainers” is: Will you listen? Will you let us convince you?  

Join us in this change won’t you? Use #BreastCancerRealityCheck✅ when you tell it like it is today (now until Midnight Pacific Time). Keep it real. Join our Thunderclap. For more details, see my #BreastCancerRealityCheck page. Shout out the TRUTH!

Now, GO!!!

Thank YOU!!

You did it! Now 100 of us have signed up for the Thunderclap on Oct 1! Now we know our social media message will be sent out at 7am PDT/10am EDT/3pm BST. Thanks to everyone who signed up and shared our tweets, posts, and blog messages, urging your friends to join in to inject some reality into the same old tired pink narrative this Breast Cancer Awareness Month!

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We still have much to do, of course. Keep urging others to sign up–the more tweets that go out at that moment on Saturday will only make our voices louder–and HEARD! Not only that, but continue to tweet out as many realities of your experience ALL DAY on Saturday. I know, I know. It is so much easier to just nod when someone says something irritating and clueless–because they have not had cancer and just don’t know. Well, rather than rolling our eyes and shrugging–let’s clue them in! Affect some change!

But right now, I’m taking a moment to breathe, to revel in my gratitude to all of you, for joining us on this crazy quest to try and start changing the narrative just a little. It’s true, I am a Curmudgeon–that will never change. But I am gleeful that so many of us share this load–and are willing to shout it out!

I can never thank you all enough!

Loud!

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Click the picture to sign up for the Thunderclap

We all want to give the world a #BreastCancerRealityCheck✅ on October 1, and we want the world to HEAR us! So we gotta get LOUD! To that end, a group of friends on Twitter formed Pink Is Not a Cure (PINC) just so we could create a Thunderclap—a sort of “social media flash mob.”

Some of you may already be familiar with Thunderclap and how it works, but some of you may not. Here’s the deal: We created a single tweet with the #BreastCancerRealityCheck✅ hashtag and everyone who signs up will have that single tweet sent out all at once (7am PDT/10am EDT/3pm BST):

“We don’t sugarcoat the truth: 1,430 will die today!  We need life-saving research. Join #BreastCancerRealityCheck✅”

*See bottom of this post for FAQ.  We need at least 100 of you to sign up so this tweet (and feel free to have the message sent out on your Facebook and Tumblr accounts as well) will be sent out on your behalf—but we’d love 1,000 to sign up! The idea, of course, is the more #BreastCancerRealityCheck✅ is in use, the more likely it will trend and attract attention. Hey, we need something to be heard over the din of Pinkness and whatever celebrity scandal will be happening that day!

Now, that is just the ONE tweet, we are still counting on everyone to craft their OWN creative and inventive tweets and tweet the heck out of them as often as possible, ALL DAY LONG. Which leads me to another exciting aspect: You Could Be Tweeting for Charity!

A panel of US and UK judges will pick the WINNING TWEET that best captures the spirit of this 1st Annual Breast Cancer Reality Check✔ Day. The person who contributes that winning tweet on October 1st will have money donated, in their name, to a US- or UK-based breast cancer charity advancing the kind of education and research that will SAVE LIVES. Symbolizing those 113 people (and many more worldwide!) lost to metastatic breast cancer on October 1st, the donation amount in the winner’s name will be £113 GBP (or $146 USD at current exchange rate). Winner will be announced and notified on Saturday, October 8th.

The general public is so accustomed to the usual pink din of October, they likely tune it out at this point. We wanna shake things up; inject some reality into this stagnant old pink ribbon fairy tale. Help us do that—put YOUR REALITY out there. For me, one of the best feelings I got after I started blogging was meeting people online who were NOT other cancer patients, who came to me and told me “I had no idea,” and now they don’t go along with the same old pink story each year either. They GET IT. It’s a GREAT feeling, being honest and changing minds!

*In case you are hesitant to sign up for this Thunderclap, know that they will not spam your friends, or tweet anything else on your behalf other than this single tweet—yes they do ask for access to your friends list—their FAQ page can explain all this way better, check it out: https://www.thunderclap.it/faq. And you must go there and sign up, not just like this blog post or the tweet inviting you to do this—you gotta go through the steps. It won’t take long and it’s painless. Trust me—I signed up for these things in the past and I have the patience and attention span of a gnat. If I can do it, so can you!

Visit our Thunderclap page by clicking here, the graphic at the top of the page, or the graphic below and please, please, please, sign up and participate!

How Did I Get Here?

This is gonna sound weird coming from someone who 1) is writing a blog about breast cancer and 2) is usually engaged with breast cancer social media users for a good portion of every day. But here goes: sometimes I forget how it is or why it is I came to be so involved. Do you see what I’m saying? I am simultaneously ultra-aware I had breast cancer but get caught up in criticizing Pink culture that when I stop and go to a doctor appointment, I still get that twinge: “How did I get here?” Then I hear the Talking Heads song (Once In a Lifetime) and visualize David Byrne in that damn big suit. “How did I get here,” he infamously asked.

Yes, it is ridiculous that I am still a bit shocked I had cancer. But sometimes I am. It is insane that at age 44, I gathered all my cancer records in my cancer binder and headed out as if it’s all old hat. Well, it IS old hat for me. Need I say it shouldn’t be old hat–not for anyone, not for people under the “average” age? Why the hell should there even BE an average age? Nothing…NOTHING average about the cancer experience–it really is just too strange and unexpected, and wrong.

I admit I get tired of it, of having had cancer and being in CancerLand. Yeah, yeah I know–this is when people could say to me, “then stop blogging, walk away, you’re basically done.” But I know better. I know my risk. And walking away won’t change the fact I still have to see Dr. Onco again a year from today. Pretending doesn’t change anything. Ignoring doesn’t change anything. And I would never be OK with myself for not at least trying to make this hideous experience a little less hideous for the patients diagnosed today, who will go into a sort of shock, who will turn up their nose at the status quo of pinkwashing.

So I do what I do, for better or worse.

20160922_154803-2I take a time out for this martini. Then back to trying to tell it like I see it: that pink drenched crap you see in the fluffy ads and in the stores? Yeah, it ain’t like that AT ALL.

To Educate This October

Most of us acknowledge “awareness” has been achieved, it is time for education. There are so many myths out there about breast cancer to be busted! Like how 1 in 8 is lifetime risk, not the risk a random 40 year old (non-BRCA) woman has. That’s just one of those fuzzy slogans that needs to be cleared up. What are some others? I’m not good with stats and numbers–but so many of you are–help me!

This anotheronewiththecancer blog of mine has been like a 4 years long gripe. I complain a lot, I know. And anyone would be right to ask me what I plan to do instead of just bitching. How can anyone expect people to know what it’s REALLY like to have breast cancer unless we tell people? How can people know that getting reconstruction is not a simple,”boob job” unless we explain how it’s different? How can people know how much we fear recurrence and that can happen even after that magical, mythical 5 year mark? How can people know that completing treatment doesn’t equal being “all done”, that in fact, my oncologist’s phone number will be in my contact list for a whole ten years? For that matter how can people understand that for metastatic patients treatment NEVER ends, until death? (Check out the Laurie Becklund video and my post about these issues in The Next Time Round.)

back-to-school

On October 1st, please join us in educating, in setting the record straight, in injecting some reality into the perky Pink slogans that will saturate all media and even our in real life experiences for 31 days. Use #BreastCancerRealityCheck and tell people all kinds of things that you wish they knew! We’d especially like this to get trending on Twitter–so, tweet, tweet, tweet!

I for one, and I suspect many of you who read my blog, am just so tired of all slogans. I’m compiling a list of things I want people to know. All under 140 characters, which if you’ve read my long-winded blog posts over the years, you know how tough it is for me!

We so often say it is time for education, the time for awareness is over. So, in the spirit of Fall, let’s take the public back to school.

No Participation Award For You

I will try not to be harsh when I say to anyone out there doing the silly “awareness” selfies, doffing your bra (groan), or even buying useless products with ribbons, that you are not accomplishing much of anything. And therefore you do not deserve applause, gratitude, or the right to gloat, “I helped.” Stick with me, and I’ll suggest a few ways to rectify this. But first you need to understand what is going on here.

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Since I do not have children, I don’t really have an opinion about the ongoing issue of so-called participation trophies or entitlement awards—you know, little do-dads given to kids just for playing a sport, showing up, etc. I am not a sociologist/psychologist, so I only have a vague idea of the effect these awards had on those kids—now adults. Apparently they are unable able to handle disappointment and other life issues, because they no longer get recognition for every little thing they do, successful or not. 

Now I must pause to say I do reward myself for the little things, especially these days after cancer. Hey, if I get dressed with matching socks, remember to get something at the store without it being on a list—that is an excuse for a party in my book, thanks to chemo brain. I give myself a mental smiley face sticker for remembering enough of my phone numbers, password codes, and etc. to get through a day. So maybe I’m just as bad here. I don’t know.

That guilty admission out of the way, I am going to criticize the culture of participation awards as I see it in current awareness campaigns. This is an idea that was a mere seed for a long while in my brain, and exploded recently with all the articles written about Wilkinson. I’ve touched on the issue in past posts, so I’m bound to repeat myself here.

(And no, I’m NOT picking on Millennials, I don’t care about that. I’ve seen the “anything for awareness is good no matter how unsavory it is” attitude displayed by people of every generation. So settle down.)

It has been stated many times by my own self and thousands of other cancer social media participants that we have reached awareness of cancer, especially breast cancer. So any time I see “awareness” stunts online, I AM going to call bullshit. True there is still some lack of awareness in under-served communities but I’m not sure a meme is the best way to reach out. If they haven’t become aware with the repeated yearly gimmicks, which only plays to the same target market, they will not now. So shut that shit argument down now.  

Now on to the tougher aspect–all those people who react to angry breast cancer patients’ criticism with these standard replies I’ve seen only about a million times in the past few years:

“Maybe we aren’t making anyone aware, but we’re showing our support for you,”  (see my post Supporting the Show) which leads to–

“Why are you so ungrateful–we’re doing this for you!! If it weren’t for the pink ribbons and races and yes even the boobies games, we’d still be in the dark ages where no one dared to even say ‘breast cancer’,” (see my post Burden of Gratitude) and sometimes this leads to the nastiest reaction of all–

“If you ungrateful breast cancer negative nancies keep complaining and criticizing how we show support, maybe we’ll just stop supporting you.” Interesting. A threat couched in the message that all support–awareness raising or fund raising–is contingent on the recipients showing gratitude for the crumbs of attention. More proof, as if I needed it, that some people support for self-display, not because it is the right thing to do.

Yes, I said crumbs. Because that is how so much of this makes me feel. That I should be “grateful” for the attention–any attention–my disease gets, even if that attention has not reduced the rate of death, the likelihood that I’ll have a metastatic recurrence.  There is a whiff of “take what little you can get and be happy about it” that just unsettles me.

So I ask, how does that braless selfie picture help me–in real, hard, factual terms? Yes, assign it a dollar value. No, I do not want vague explanations of how the spectacle raises the profile of breast cancer, keeps it on people’s minds, so they donate, so politicians assign funding specifically to breast cancer research when federal money is to be granted.

I don’t want the fuzzy intangibles. I want something I can use. I want metsters to NOT die, I want so-called “survivors” (still hate that term), like myself, to have a guarantee that recurrence will NOT happen, and I want future women to NEVER get it. No I don’t think I am asking for too much. 

Or in lieu of funding research, how about this? I’ll assign a different value to a selfie, to a bald cap, to a braless day. Instead of one selfie, one trip to the grocery store for your friend in treatment so they don’t have to go out with their compromised immunity. Yes, you’re buying. I trade one bald cap/solidarity head shave for one ride to the treatment appointment at the cancer center. Keep your damn bra on, and go clean her house.

So I revisit the question I asked at the beginning. Am I being harsh? Yes. This is a topic that makes me as angry as I was in October of 2012, having just finished treatment and dealing with depression when the enormity of how awful Pinktober first REALLY hit me (I was never a fan before, and the first 2 Octobers I spent as a resident in CancerLand, I was just overwhelmed with diagnosis and treatment). My, OUR, needs are tangible, and games, gimmicks, and sexualization that isn’t even original is NOT working. So how can anyone expect me to applaud useless gestures, when those gestures won’t guarantee I make it to 50 or 60 years old?

When I see those comments that if we don’t stop complaining about gimmicks that maybe all support will be pulled from under us like a rug, I just…I’m still astonished. We are telling you what we need, what is better, and you will not listen.

Do the tasks I suggested. Or if you want to simply donate money, look up a reputable charity that actually puts money into science rather than marketing more awareness events. You can do it, if you’re reading this, you’re on the internet with information a click away. Start treating charitable giving like investments, like car-buying. Think!

Am I harsh? Yes. Look back on 4 years of this blog and look at what I call myself–what did you expect? Cancer is not a barrel of laughs, neither am I. Why did you think “fighting” it would be one?

The time for coddling the public is over. Awareness is more or less achieved. It is time to graduate school/college, to roll up the sleeves and get to work. To adult. Yes, I find adulting hard too, even now, after having to adult during cancer. But it must be done. We are grown up now. No more games and silly frat party crap.

Children who got participation awards apparently learned a harsh lesson when they entered the workforce, or were even unable to do so because of a bad economy. They learned there was no trophy for trying–but failing–to get that job, or to succeed. Likewise, there is no “you tried” award ribbon for a useless “awareness” gesture. I hate to be over-dramatic or use the hyperbole so often used in cancer slogans. But cancer can, and often does, lead to death. Or at least to a life with some shitty side effects that last FOREVER. It is a zero-sum game for too many. So I don’t have time for someone’s hurt feelings when I point out that taking off a bra doesn’t help us.

Am I harsh? What the hell do you think cancer is?

Tell Your Truth on Oct 1

OK, I’m sure we’ve all seen the return of that damn No Bra Day/Set the Ta-Tas Free Day graphic on our feeds. A week ago I re-shared my old How About a “What Cancer Really Does to Breasts Day”?  post because I’m just so sick of it! This sparked a chit chat on Twitter with my friend Annie @barbieslosingit. The chatter grew and here’s an idea:

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Use #BreastCancerRealityCheck on October 1, Saturday, and let’s get it trending. How often do we roll our eyes and talk about how people just “don’t get it”? Well, let’s make them get it! We CAN talk back to hit back at all these silly memes and games.  So LET’S!

Addendum: WE HEARD YOU! No, we do NOT wish to hijack September, the month devoted to other cancers (such as ovarian). The pink ribbon bully already does that! So let’s use the first day of Pinktober to get the REAL truth about breast cancer out!!

 

 

 

One Way to Talk Back

OK, I’m sure we’ve all seen the return of that damn No Bra Day/Set the Ta-Tas Free Day graphic on our feeds. A week ago I re-shared my old How About a “What Cancer Really Does to Breasts Day”?  post because I’m just so sick of it! This sparked a chit chat on Twitter with my friend Annie @barbieslosingit. The chatter grew and here’s an idea:

bcrcsummary2016b

Use #BreastCancerRealityCheck on October 1, Saturday, and let’s get it trending. How often do we roll our eyes and talk about how people just “don’t get it”? Well, let’s make them get it! We CAN talk back to hit back at all these silly memes and games.  So LET’S!

 

 

Addendum: WE HEARD YOU! No, we do NOT wish to hijack September, the month devoted to other cancers (such as ovarian). The pink ribbon bully already does that! So let’s use the first day of Pinktober to get the REAL truth about breast cancer out!!

Special thanks to @barbieslosingit and @bbccww for all their efforts with this!!

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