Tired of hearing about "Survivors"

I refer to myself as a breast cancer victim.... never a survivor.    I want to seriously punch those people who say "but you ARE a survivor"!   huh???   I am alive with a terminal illiness.  Sorry, it doesn't make sense.  We are victims and as long as we continue to endlessly endure treatment ... we remain victims.

I guess I am getting myself fired up for Pink October hell.

Jennifer

touche, everyone. if anyone else gives me anything with a pink ribbon i think i'll throw up

Oh wow, grammadebbie, am I ever with you on this one -- sick and tired of hearing about "survivors" and, as others have brought up, "previvors" and "metavivors" is RIGHT!

Regarding where you "fit in" with all the pink hoopla crap (races, walks, fundraisers and so on) -- why worry about it? As in who says you have to go to or help finance these things in any capacity at all? I don't. I have never bought or worn any pink ribbons, BC T-shirts or anything else, and I don't go to walks, runs, fundraisers or any of that stuff. Believe it or not some of those BC "awareness" campaigns do show up in the damndest places. Back in June or so (only a few weeks after my BMX), I had met my Pack Rat for lunch in the general store of his town (more like village it's so small, they don't have a traffic light, gas station or bank; population 900-something of houses in the woods in rural New England), and there was a sign outside the general store, and signs all inside, about a fair or festival or carnival thing they were holding to raise money for breast cancer awareness. The woman in charge of it was one of the owners of the general store -- she and her husband own/run it together -- and I KNOW them both, (as acquaintances anyway; we always say hello and chit-chat when I run into them although we don't otherwise socialize). Anyway -- that day I walked in, said hi and we chit-chatted, then I sat down to wait for my Pack Rat to meet me -- and I never said a word about the upcoming breast cancer shindig.  Neither did they (although I couldn't help but wonder if they noticed how utterly flat my chest is!). LOL

Mamanmidwife, YOU have the right idea -- I love your straight strong backbone, that you are able to say "no" to the pink morons and instead, donate/encourage donations solely to RESEARCH. (Personally, I've got enough breast cancer awareness to last me for what's left of the rest of my life!)

About the "fighter" image, though, I'm even MORE sick to death of THAT than I am of the pink awareness/survivor nonsense, at least in the case of Stage IV patients. Some time ago I wrote a major vent intended post (offline) called "World War IV" but still have yet to post it because of all the sisters I think it would most likely offend. Then every once in awhile I see threads like THIS one and think maybe I SHOULD post it -- if I'm not the only sister who hates the pink/survivor crap, maybe I'm also not the only sister who does NOT see herself as a "courageous warrior fighting a battle" and actually resents that image. Well, we'll see....

Donnabee,

   Yanking your chain....hardly!  How about less then 300 people in United States have what I have.  My point was that i consider myself a fighter as well.  Northing wrong with that.  Like the other poster said. I was reminding some of you that some cancers do not get a dime for research.  I pretty much begged doctors to try some treatments for me....Nope, none out there.  Wishing everyone with future cures.

Anne45,

I must have missed your post when i read through the first time.  I like that LIFERS, it kind of says it all.  That is what i want, a new category call LIFERS, don't want to take anything away from those that feel they are survivors, i wouldn't take deNiel away from anyone, it's where i spend most of my time. But it is like a life prison sentence, our bars are different but real.

These walks, benefits, etc. dump SO much money into research.  Targeted molecular therapies will eventually produce specific tumor directed therapies.  At the  ASCO annual meeting the funding is listed for the research presented, and these "pink" fundraisers are at the top of the list.  Maybe it won't benefit me, but I hope it benefits the next generation.  I think that everytime I buy something pink I don't really need.  Hope all are doing well tonight. 

I am glad I'm not alone in my feelings.  My daughter and I both hate October.  I was diagnosed Oct 2007 stage 2 BC and triple negative, went through chemo, surgery, chemo, radiation, more surgery and was clean for almost 2 years then BLAM, diagnosed again Oct 2010 with stage 4 mets to lungs and chest wall.

I've tried 2 clinical trials that didn't work and I'm now back on Gemzar and Carboplatin. They are just throwing drugs at me to see which one will stop the tumors from growing.  I see it as just a matter of time before it takes me out.  I'm sick and tired of being sick and tired.

I know everyone means well when they talk to me about staying strong, don't give up, I'm a fighter, you look good........blah blah blah.  I want to scream and slap someone but I just say thanks and smile.

I'm tired of my sister calling me and emailing me every treatment, drug, new medicine and asking me why, why, why can't I take it.  BECAUSE I'M TRIPLE NEGATIVE AND IT WON'T WORK!!!!

A friend called me the other day and said she signed US up for an event coming up and she told me that I'm to send it out to all my friends because I would get more donations.  And she isn't even going to be in town for the event.  I went to the website once and haven't been back.

I'm now so depressed that I don't want to talk to anyone, I don't want to go to work, I don't want any visitors, I just want to be left alone.  I'll shake it but I know I just have to work my way through this and get on with my life and try not to let all this crap get me down.

Well, now I feel a little better.......................

I remember being very surprised when, before I even started chemo, I was referred to as a "survivor".  I had just been diagnosed with IBC and I remember very clearly thinking "I'm not surviving.  I'm dying."  And the phrase made me quite sad.  

I don't like the term, hate the TLC catalogue when it comes - makes me feel sick, and can't stand that f*%$ing pink ribbon.  I don't want to go to a survivor's dinner.

But I get your point, Pastalover,  My daughter is functionally blind with a degenerative condition that will lead to complete vision loss. If we had a fraction of the breast cancer research money, they'd already have a cure or simply use technology to assist her without a 6-figure price tag.  It's actually not a complicated problem, really, but there's not enough money for research.  It is not fatal, but it is heart-wrenching to see your sweet little 7 yr old struggle.

So, many of us understand that it is fortunate that this odd marketing thing has happened with breast cancer, which brings new treatments and improved stats yearly.  And also, realize that if we'd caught any number of diseases or infections at diagnosis, we would have been dead then.  We all cherish, or try to cherish, the extra time we've been given provided by medical intervention.

But that doesn't make having breast cancer suck one bit less...and it does in so many ways. 

Kate33,

Is there a website for the section you quoted? It expresses my feelings on this subject.  I would like to use it as my Facebook status in October.

MJLToday - I love it! "Professional Patient"

Thank you, Kate.  Your link worked perfectly and I have added to my favorites so I can pull it up come October.

Just a couple of points. I lead a stage 4 group that I started when I was told that stage 4's were not really welcomed in the local support groups because the survivors were "afraid of us" and we were there "worst nightmare"  Are you kidding??? thanks alot...I love being their worst nightmare...NOT...so I started a group for women of all ages, all stages of cancer and while most of the stage 0-3's claim to feel like surviors after they have finished active treatment, those of us with stage 4 disease say we are SURVIVING.....some say thriving, but I would say I thrived before and have too many issues to thrive now. I sometimes feel like I am hanging on by a thread wondering where my real body went....

And I loved what you said about giving money to research not awareness. I know someone said they don't like the term metavivors but that group has done tons to give awareness to stage 4 bc and to the lack of funding we truly receive. Out of all that pink money, less than 5% is for metastatic BC....Don't these people realize that its MBC that kills you. Alot more $$$ needs to be given for research specifically for MBC....Metavivors actually raises $$ specifically to support scientist who research MBC....Need to figure out a way to make sure any donations we give go for mbc....enough already.....thanks for indulging the rant and thanks for starting this....christi

I have been recently diagnosed with stage iV, mets and ilc to both breasts, currently on femara and zometa...     my numbers27/29  after one month have gone from 282 to 180... but       I know in my heart I will never be a survivor ! there is no cure and although I am trying to deal with this one day at a time ,I keep thinking I am a STRUGGLER... struggling like the rest of  you to just be able to have some sort of normalacy in what is left of our lives............. 

I wish you all on here the best of luck cause I think thats what it all comes down to ... lucky enough to find a treatment that starves off some of this cancer crap !

I hate that word survivor it implies one has eluded death, and that is impossible, and the word survivor in terms of cancer is insulting to those who "survived" one year, two days or ten years until their death. It implies that if one dies of cancer somehow they were not fighting to live...I hate that word as much as I hate horrible diseases hiding behind those cutesy dumb ribbons.

I got a pink ribbon dish towel what the f!@&$!!!