Tired of hearing about "Survivors"
Comments
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I just made up this flyer that takes the MBCN's 13 facts about breast cancer, added to the avatar of the f awareness ribbon along with this statement
"BUYING A PINK BLENDER IS NOT GOING TO CURE MY CANCER, ask me my story so it doesnt become your story"
I am gonna put this on the front of my binder @ school and share this with EVERYONE!
I HOPE TO GET A SHIRT MADE UP TOO WHERE I CAN WEAR IT ALL MONTH!
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texasrose - I LOVE that!
My daughter raised ove $1500 and is out participating in the Run for the Cure today. I'm very proud of her...I won't take away anyone's pink efforts, I just don't wish to be defined by a pink ribbon. Seriously though...I am not a fan of Pinktober....Breast Cancer Mushrooms in the produce department of the grocery store....??? C'mon!!!
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I applaud the spirit behind so many of the efforts and have supported many local events. I dislike the crass commercialism, tho....
"Cancer is not a ribbon, a screening test, or a leisure activity. It is not a sassy t-shirt, a proclamation of survivorship, or a gift worth giving. It is a disease.
For 65 percent of those who are diagnosed, it will be the eventual cause of death.
When we ignore reality in exchange for feel-good fund-raising activities, we alienate and forsake those for whom cancer is a major cause of suffering."
-Gayle Sulik, author, "Pink Ribbon Blues"
http://www.facebook.com/pages/Pink-Ribbon-Blues/113230458731603 -
I am really late to this thread, but just wanted to point something out about Komen.
I am about to start a very large clinical trial, one of the few designed just for TNs, and one that is showing some promise. It was funded by Komen. So while awareness is a large part of the organization, research is also there.
And I am a lifer. I'm not brave, courageous, or waging a war. Pink has never been my color. -
It use to be the colors for October were black and orange, not it's "Pink". One can't go into a store, look at a magazine, purchase a cookie, a trowel, a towel without Pink staring at you in the face. Five thousand strong were cheering in pink in my area a few weeks ago and it was still September. Pink is for Breast Cancer Awareness. Is there anyone in this galaxy that is unaware of breast cancer? "Prevention", according to the ACS, NIH, Mayo Clinic, WebMD and every other medical facility all state unequivocally that "the casue of breast cancer is still unknown". You can't prevent when the cause is yet to be discovered. "Early detention", that does help some but, it's not a guarantee. About 25% stage 0 or 1 often morphed to stage IV. You don't hear any of this in the pink hype.
Six billion is raised each year on behalf of breast cancer according to the recent article titled "The Big Business of Breast Cancer".
Yet, there is NO cure! According to Dr. Eric P. Winer, director of the breast oncology center at Dana-Farber Cancer Institute in Boston, "the number of deaths breast cancer causes has remained fairly static". In fact there are only about 100 scientists working on breast cancer metastasis because "Funding agencies as a rule want to say their research portfolio is successful --- they want a return on their investment very quickly" according to Dr. Danny Welch of the Comprehensive Cancer Center at the University of Alabama at Birmingham. Both quotes come from the article title "A Pink Ribbon Race". And do we wonder why there is no cure!!!
All this pinking makes one thing that a celebration of some kind has happened or soon will. The fact remains there is no cure for breast cancer and one isn't even around the corner. A movement began as a positive influence in the 1970's to make women aware that they need no longer whisper about breast cancer anymore. They had options and they could use them. Then in the 1990's the pink ribbon appeared until it has gradually became so overdone by so many who often line their own pockets with the profit.
Why do they believe we need a constant reminder every minute of our day during October about breast cancer. We are all to aware! I wish orange and black would reappear, it is a lot less scarier. Off my soap box!
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Thank you thank you for this post and string of responses. I agree with so much that has been said -- thought I'd add another dimension that I'm sure many of you have encountered. The one where you get the question: "but didn't you get mammograms? Did you do self-check exams?" I have had it from Stage 0-I and from well meaning friends. But THEN, when you explain a clear mammo only six months before the lump was felt, and by then it was at Stage IV because it is invasive lobular that hides from mammos and I went from feeling safe to full-on chemo, surgery, rads...well then they almost shrink away because I did all the right stuff just like they do and boomo, look what happened. I celebrate every woman's success in this horrible fight, no matter what stage she is. It is the lack of understanding, as so many of you have eloquently stated, that is getting perpetuated about survivorship and "winning." This organization is the only place I have found for us whose journey is so unpredictable. Could be a year, could be 5. So yeah. I am ALL FOR the fighter ribbon, and I am so for donating to research as opposed to awareness. Without that research some of us wouldn't even have had a year from dx, let alone the possibility of more. Soldier on fellow fighters. I like the term...that's what we are.
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I don't like survivor either. I feel like that a survivor has finished something that has an end, and I will never have an "end." I do like fighter.
I just signed up for the Making Strides Walk on the 15th. I swore I would never do these and was like one of the other posters in that I didn't want to draw attention. Then, I thought, well why not, it's healthy for me. However, I did not realize they were going to group me and make me wear stuff. I am not wearing a sash, and I don't want to identified and tagged.
I just wanted to walk with a few of my friends and maybe raise a little money.
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There was an interview yesterday on the news. The woman being interviewed said to watch where you buy the pink stuff. She said just because they say the money is going to support breast cancer awareness doesn't mean it really is. She said they try to lay guilt trips on you to buy, but think long and hard before you do. Anybody can say anything. You need to know exactly what organization you're supporting.
She also mentioned that more money needs to go to research for a CURE, not just awareness. She stressed this several times.
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I find "Pinktober" and other "pinkness" rather frustrating. I'm not embarrassed or ashamed of my breast cancer....I just don't want to be defined by it.
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I am sorry to intrude on the Stage IV forum, but the title made me want ot read it. I am having a VERY tough time with the whole "survivor" term. Cancer did not suddenly make me a survivor. Yes, I am alive. Yes, I had cancer. But do I feel like I am out of the woods? No. I will be living under the shadow of breast cancer every day of my life. I refuse to live in fear, but I live in reality that it can come back with a vengence. I look at us like soldiers who have been drafted to fight in a horrific battle. Some of us don't make it home. Others come home but the battle continues. I know women who have been in remission for 20 years and but I know plenty more that are seeing a recurrence within 2 years. Yes, the whole "awareness" thing ticks me off too. Frapp I like "fighter".
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I am chiming in again because, as so many of you have stated, no one with cancer is a survivor. You can never say "It's gone and it won't come back". It sneaks up on you when you least suspect it and pounces.
Isn't a survivor a person that goes through an ordeal and lives to tell about it? The "survivor's" ordeal never comes back unless they seek it out again.
I'm Stage IV and was called a survivor last week by a medical professional. I was at a loss for words after all the great comebacks I've read on this forum.
I'm nowhere near being a survivor. For Stage IV, it doesn't go away. If the cancer doesn't kill us the side effects will.
Also since being on this forum, I've been reading the small print on breast cancer awareness items I see. So far, they're pink for bc awareness. Not much is said about donating $ and not where the $ is going.
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I have always been wary of the title of "survivor" but I have used it for lack of a better term.
I was dx in 98 when I was 23. Over the years I've watched the whole "pink" movement grow, and I can remember getting a mammogram at a clinic in Beaverton Oregon when I lived there in 2005 and having a near meltdown. Everything in the mammo clinic was pink, and I mean EVERYTHING. I remember sitting down in the little changing room and crying. It was just too overwhelming, and that was before people really started to complain about the pink. So I really beat myself up over the idea that I was so upset with the immersion of pink.
But you know what? I use it to my advantage now to make an impact on people when I'm out and about.
I have a huge pink suitcase that I use when I go on splashy vacations or business trips. And when someone sneers or makes a joke about my huge pink suitcase, I look right at them and say "why yes, you know, I'm a 13 year survivor of breast cancer" and give them a big ol' smile. That shuts them down quick.
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I can understand why there is a backlash to the "survivor" term as used in many of the Pintober festivities. It's not like our planes went down in the Andes, or we are recipients of a Purple Heart medal and have shrapnel in our butts. We fit the description, if you go strictly by Webster's but a lot feel like it is a misnomer.
It doesn't phase me when the average, non-cancer-y person uses the term "survivor." I know it's because the media popularized the label, so they use the one they have heard and seen most, and because unlike us, they don't have the exposure to all the jargon and nuanced terms we have come to learn. "Fighter," "warrior," "casualty," "victim," "veteran," "ninja," "living with cancer," "NED," "NERD," "stable," "remission," "cancer-free," and more. Once B/C becomes a reality in a woman's life, it's like an Eskimo talking about snow. Individually, you get to settle on the term you subjectively like the most (or hate the least, as the case may be.)
When writing elsewhere about Pinktober today, I came up with the t-shirt I'd be likely to wear...
S U R V I V O R
I've Been Called Worse
If any of my screen-printing cancer sisters ever puts that on a retail product, consider that phrase copyrighted, and get in touch on the profit-sharing.
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Try being a male with Stage IV breast cancer and having pink everything surrounding you.
My husband doesn't complain about it,but this is my first Pinktober and my heart breaks every time I go into a store.
Sometimes I just want to shout out that MEN can get breast cancer too and it's not all about girly pink. If anything,I would like the awareness to emphasize that men can get and do die from breast cancer.I think we need a BC ribbon with one half pink,and one half blue.
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Hansie, I agree - who decided on pink? Has anyone seen the email or website that shows all the different ribbon oclors for all types of cancer? We're color-coded!
Well, I went shopping yesterday and the outlet mall has a marathon pinktober thing going on with tacky pink bows hanging in front of each store that participates. So I was purchasing some clothing and the salesperson told me if I donate $1 to BC I will get 25% off. It caught me of guard....I wanted to ask if I could get a discount because I have BC....but I cheerfully donated because I wanted the 25% off. So it's not all bad......just annoying and EVERYWHERE!!! -
I struggle also and in fact quit going to the "walks" and fundraisers because they made me so mad. I often felt like forming a group of MBC ladies and showing up at the Komen race dressed in black with signs listing those that have died that we know and saying something like we are not survivors or don't forget about us...or something like that.
Cat
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i'm not really for all the pinkie stuff but i do indeed like pink much better than black and orange which is just another marketing strategy. it's scary.
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WOW I feel the same way. I don't feel like a survivor...i feel like I am SURVIVING....everyday is fight. Today was one of the days were I could burst into tears. Went in for semi annual CT SCAN and with my life never a dull moment. As I came out the machine I started having allergic reaction...so is life ladies. Continue to keep your heads up.
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I usually do donate a dollar at the check-out stand at our local Safeway just because I feel like a BC Grinch if I don't. We live in a relatively rural area and most people know me and know what I have gone through with breast cancer, but yesterday when I was asked if I wanted to donate a dollar, I told the poor check-out girl that I already donated two boobs, and that's all they get. My husband laughed all the way out to the car.
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Survivor? Yeah, right. Tell that to my breasts, my ovaries, my bones, my pericardium...
My shirt can say
Breast Cancer
ANTAGONIST
And enough pink, already. I'll take mine red, as in mad as hell.
~lulubee
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lorij44-LMAO!
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This is a great article - from Think before you pink
http://thinkbeforeyoupink.org/?p=1772At last we know why we come last in spite of so much pink we are looking at the world like it has conjunctivitis.
Linda
Edited to put the second "c" in conjunctivitis:)
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lorij44 - thanks for the laugh therapy! you spoke for so many that day!!!
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I guess I'm a "Lifer"!
I'm with all of you on this topic. I've just been Dx with IBC, in addition to my TNBC. So the folks at the office are trying to be very supportive, and are very into the pink thing "in honor of you", and walking "in your name". I just haven't the heart to be a grinch with them about that. However, I do emphasize to them to be SURE that anything they buy, or donate to, is for Research. They are generally very open to that, once they see the difference between awareness and research.
And I am honored, and touched, by their efforts in this regard. And I hope I'm spreading just a little more inormation about the other (real?) side of BC, whenever I have a chance. -
I work as an elementary school aide, and there's also a teacher there who learned she had bc a couple years ago. All this month, the school has done stuff for cancer awareness. I sort of cringe but agree with TNBC-er, I don't want to be a grinch about it. They've sold pink T shirts and every Friday lots of employees have worn pink shirts in support, ect. I only wore pink one day this month. I didn't buy any T shirts. I just can't join the hoop-la. I really don't need or want an entire month's reminders at school about bc. Yet I know they are all just trying to be supportive.
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Let's hear a big whoopin' cheer
Cause November's finally here.....We can only hope and think...
that it's "g'bye to pink" ...... until next year
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Hi
I'm glad its not me that just hates the word "survivor". I'm not even sure what word would work, though.
I'll survive until it kills me....does that make me a survivor
Its total bullshit
Mary
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What one word could possibly sum up our experience, fears and hopes? I first thought of 'defender' in the sense that we didn't choose this disease but have been attacked by it out of nowhere. But it still doesn't do the job. We're basically walking through our days with chemicals on one shoulder and Death on the other and hoping the journey will be as long as possible. We are survivors of each day but no more than that. This doesn't mean we can't take pleasure, be positive, doesn't mean we have to obsess about it and make our family and friends permanently miserable, but it does mean that we can never shake of the knowledge that it will get us in the end. We live on a different planet and I can't think of a word for it. Sometimes when I look at strangers, they seem like aliens with no problems or concerns at all (everyone has problems and concerns - I know this - but they often seem so trivial compared with ours).
My old best friend emailed me recently from Vancouver (she has had a brush with breast cancer) to say that she had done a pink awareness run and signed my name for me on a big pink bus. She did it out of love - I didn't have the heart to say anything but thank you, although I detest all that stupid pink hoopla.
I don't know, perhaps we should just be called 'Strugglers' because we are all struggling to muddle through the best we can until we can't.
Hope I haven't depressed anyone - I'm feeling well and positive but this thread brought out a bit of anger and I needed to get it out. Hope you are all having a good day today, if not, then a better one tomorrow - that's how it is, isn't it?
Barbara
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Chicadee, even Stage 1 and 2 can have a recurrence or a second BC, it is not that they are going to have better outcomes, on the other side I have seen women with metastatic cancer live many years.
To be a Survivor is a person that fights to stay with their loved ones. In breast cancer we do not need a caste system.
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Dreaming,
That was very well said - we all share the physical and emotional effects of cancer.
I sometimes do not relate to the word "fight" or "beating cancer" - - I just know now that my body can make cancer cells. I have them removed, take insurance treatments, then wait and see. It feels so passive. But the treatments and anxieties that most of us go through are real and ongoing. Some choose not to want to know much; others can't seem to learn enough about cancer. And for some, sadly, the cancer is always present.
I have yet to find a word for any of this.
All I know is I hate cancer and look forward to the day when the cancer club is disbanded due to no new members.
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