Tired of hearing about "Survivors"
Comments
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Wow, Phyllis. What a story. You have certainly suffered from this horrible disease, both directly and indirectly, for most of your life.
I feel, like most here, that "survivors" just doesn't fit as a term because none of us know if we are going to survive the disease, or not.
I don't think most people want to be labled with a term of any kind, and because each of us has a unique cancer, we can't really be lumped into a neat little box. Most of us here are just living with cancer, one way or another, but we don't want to be defined by it, or by our relation to it.
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Hey there GrammaDebbie,
I'm not stage IV but am TN and feel like I should say "Surviving" (so far) and not "Survivor". I felt good the other day and picked out a pink ribbon design for a new tattoo (small) on my shoulder blade where a little butterfly tattoo has resided for years. I started to look at the word "Survivor" and thought...what will my daughter think if she has to bury me and I have that stupid tattoo on my back?
Lori
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Sandilee:
Amen! Oh, BTW, my sister who has had no reaccurance for 20 year does consider herself a survivor, but does not participate in any walks or wear a pink ribbon or any other thing. She says it is too grim of a reminder. I totally do understand what you are saying, but if it helps anyone with BC to cope and they want to call themselves a survivor, I understand that too. I do not consider myself a survivor as I still have a lot to go through and I know that even though I had both breast removed, my chances are greatly reduced, but it is not a guarantee. I will be forever looking over my shoulder. I think this was a great discussion too!
Phyllis
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I can't contain myself from jumping in here. Please forgive me for I am a Stage I but the difference being after this last year I am not fooling myself. I have made it plain & straightforward to my family, my onco and everyone else. I am done. I don't want any regular scanning, testing, or poking & prodding me. I am more interested in the quality of life rather than quanity of life. I felt like I bought time to spend with my one & only grandchild knowing there was no guarantees.............this BC s**t is nothing more than a crap shoot with the roll of the dice.
I too hate pink, ripped all the magnetic "ribbons" off the vehicles in the family. DD said "there are also people at work with BC that I support". My response...........support & honor your mother first and while you can. She never said another word.
Survivor ??? Only time will tell and the clock is ticking. I told my family & friends, I will not let this define who I am nor will I walk around feeling like I have BC stamped on my forehead. BC belongs in Hell, for that matter all cancers belong there as we don't have a corner on the CA thing.
I am glad to know that I am not the only one out here that voices their feelings and my onco would say to me that I need an attitude adjustment !!! I have straightened him out on that one too !!
Hugs to you all.
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BC is hell.
BC treatment is hell.
That's it, I'm calling myself:
A BREAST CANCER DEVIL.
Leah
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I call myself a cancer patient, and I am fine with it. It is the truth and no label will change it. As for how I feel, I want the freedom to decide that for myself; not live under the tyranny of idiotic names such as "pink survivor." We didn't choose the disease, nor to die from it, for those who will, so we should AT LEAST not be commerced, profited, raced and exploited into having a political identity.
The pink movement is often defended on the grounds that it attracts funding. That is a fallacious argument, IMO. Funding would have happened with or without it.
Edited.
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And where does that pink funding go? Pat steeg showed in her paper that in the US it is 2% overall to Stage IV - in the UK it is 5% except for Switzerland where it is 11.4%. No wonder celebreties go to Switzerland - but they still die of S4.
LindaBB
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Tell it, LindaBB!!
From the NYT:
Since it is metastasis that ultimately kills, some advocates want more resources devoted to its study and treatment. Even though many cancer drugs are initially tested on patients with advanced disease, Danny Welch, an expert on metastasis, says only a few hundred scientists in the world are trying to understand the process.
"It's responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget," said Dr. Welch, a senior scientist at the Comprehensive Cancer Center at the University of Alabama at Birmingham, who studies genes that suppress metastasis. (Those genes are turned off when cancer is advanced.) "Funding agencies as a rule want to say their research portfolio is successful - they want a return on their investment very quickly."
Patients with metastatic disease are frustrated because they are often barred from clinical trials if a certain number of chemotherapy regimens have failed to work for them.
See the whole article here:
http://www.heraldtribune.com/article/20110118/znyt04/101183004?p=4&tc=pg
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What a great topic. I, too am not into the whole pink campaign. I don't participate in the walks/runs or relays - I feel that I am contibuting to cancer research just by having the disease and being in treatment!!
'm not a warrior, a soldier, or a hero. I'm not courageous - I had no choice. I'm not on a journey, taking a detour, and my life did not hit a bend in the road!! I don't want to wear pink boas, or tutus. I don't promote awareness by making my status on facebook the colour of my bra. Actually I really don't understand how that promotes awareness....but whatever.
I have a disease. I am dealing with the effects of that disease and it's treatments everyday. I have been very ill and it is going to take some time for me to get my strength back, but I will never be the same person I was a year ago. Sooner or later, the cancer may come back...or not....that is my reality.
My prayers and respect go out to all the stage IV ladies. (((hugs)))
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I look at this as a chronic disease, since November 2009 anyway. My favorite purse is dusty pink and I never gave it any thought until last year during October when someone at the clinic made a "pink" comment about it. I quit carrying it for several months, but gave in to its calling.
Hugs to all.
Pam
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When I was first diagnosed as stage II, my family gave me tons of pink items..charm bracelets, the plastic ones, pink suede jacket, teddy bear, mug, you name it. Fast forward 6 years..now I'm stage iv, and I wonder where are my gifts??? What do you give the stage iv woman...so I guess survivor really isnt the name for me...I'm surviving day by day, trying to do the right things, so I guess it cant be defined.
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Pink October just pisses me off and makes me want to scream. So many companies are making money selling pink everything and so many women/men are being led to believe that if caught early you can be cured! Well, I had Stage 1, node negative disease and guess what? 13 1/2 years later it morphed into Stage IV. I am not a survivor; I am a person living with cancer until the cancer kills us both. Luck of the draw. No history of breast cancer in my family.
Perhaps Pink October should be followed by Black November in memory of the 40,000 women who die of the disease every year. And whoever suggested that the money that is raised go to research instead of awareness is right on. Meanwhile, those of use metsters who are nearing the end of our journey don't need reminding that we should keep a positive attitude, see the glass half full, be thankful for all the wonderful drugs we've poisoned ourselves with, or any of the other platitudes people feel necessary to share. Blech. This just really hit a sore spot for me.
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How about "terminator"
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How about "Terminator"
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Jeanne, liking the "followed by Black November". Can I use that statement?
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http://ihatebreastcancer.wordpress.com/2011/08/20/keep-shining-2/
Last year I created my own holiday, "Breast Cancer Rembrance Day" on Oct. 31....
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Half of November should be black to help raise awareness that it is actually a fatal disease. Everyone around me acts as if this is just side effects of treatment.
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Check this out. My daughter just introduced this website to me. (Sorry, I don't know how to hyper link it, so you have to cut and paste. Can anyone explain to me what I need to do?)
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http://thinkbeforeyoupink.org/
(See other post for how to link)
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Maybe "survivalist" is more apropo. We might not be eking out a mean existence in the woods, but it is definitely a way of life. Not a chosen one but the one life has handed us.
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I have participated in several walks during the 20 years after chemo and before recurrence. I totally get what you all saying though I never really thought about it. I like "surviving" over survivor. One of you mentioned that term. That's really how I feel ... I am surviving each day but really don't consider myself a survivor .... Guess I can start using those pink survivor shirts to clean house in ... Don't care if I spill a little bleach on them ... LOL. Thanks to you all for making me re-think then survivor term. You are awesome!! So glad I found this site. Until I retired I didn't have time to surf the web. Glenna
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I have a different problem - I've always worn pink it's a good color for me. Now I hate it when people assume I'm wearing it because of BC.
We are people who had/have a disease. My oncologist was confused when I told her I didn't consider myself a "survivor." She asked what I called myself, and I answered a person who was sick and isn't now (obviously no guarantees about the future). I don't call myself a survivor because I don't want to define myself by a disease. I'm an artist. I'm an ex-New Yorker. I wasn't in the World Trade Center, so I'm not a survivor. -
guitarGrl, I, too, always wore pink as it looked good on me, and my husband often commented how nice I looked in that color. (My avatar photo was taken pre-bc). Since being dx in January, I have hardly worn anything pink at all. I just don't want people to assume I'm making some kind of bc statement by wearing it.
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"Someone who was sick and isn't now"
Perfect!!
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I am so with you on this. I don't want to be the face of breast cancer. I participated for a few years in Relay for Life but have backed off recently because I don't want to be the "Jerry's Kid" of breast cancer. I don't want to parade around with a "Survivor" sticker on me. I have survived 4 1/2 years since my Stage IV diagnosis and have now found out it is growing again. When you are in the midst of a battle, you aren't celebrating surviving, you are just struggling to stay alive.
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Enough with awareness, it's time for a cure!!!! Please look for the thread and contribute!!! You rock it ladies!!!
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Thank you all for your honesty in this thread. I'm new to BC. Local treatment in August (lumpectomy and brachytherapy) left me feeling hurt and sick but victorious. Seeing the oncologist (and then the second oncologist) this past week was a real shock. Wow, those of us with stage 1 have a very real chance of recurrence, and the chance remains for a very long time.I felt a bit betrayed. There's a lot of dishonesty surrounding this disease.
I have noticed that people say things like "you're so strong, of course you'll be fine." That seems so ignorantly judgmental of the women who die of it. It's a nasty, insidious killer and I don't want to kid myself that it can't happen to me. It could. It's happening to a bunch of you right now.
Thanks for teaching me about the pink backlash. I was feeling guilty about not wanting to "go pink" but now I don't.
May you all sleep well at night, free of pain, and find beauty in your days.
Ellen
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Treeskier - Ellen - thanks for mentioning how we stage one ladies must face our fears of the unseen and unknown (the cancer monster).
First, thanks to all of you who educated me ('Think before you pink') and are so honest about your experiences while living with cancer. I never looked good in pink, but I bought a few pink shirts (just before BC) because I mostly wear dark colors and wanted to lighten up. I am rethinking == I don't love pink, or the idea that there may be comments I never near. Or cheers I do not want. I hate superficial.
Second -
I am grateful to be Stage 1, to have had an ambulatory lumpectomy and only SNB; to have had little discomfort; to have missed only 4 days of work; to have been told by 3 doctors that I will be 'FINE'....
Don't get me wrong - it couldn't be much better for me right now as I wait for onco appointment and treatment plan (rads and pills for sure; chemo maybe).
Second....
I returned to work last week after my post surg appt. (clear margins, 0/2 nodes) and 'shared' my great news. What the heck - I was reassuring everyone and telling everyone that I'm FINE, REALLY...FEEL GREAT...BEST NEWS.....and that I just have to wait about the treatment.
I got so depressed that day at work and later at home and didn't know why.
I realized that I didn't like that I shared my personal stuff with impersonal colleagues at work (mostly young males); that my new IDENTITY at work seems to be BC (!!!); and that because I resumed my 'normal' life so quickly, I did not DEAL WITH what was really going on in my soul.
Third....
Here comes Pink October...THANK YOU for giving me permission to not participate, to not like the gifts, and to not take on anyone else's label. (in fact, I love that you don't all agree what to call ourselves - because we are all different.)
My sweet, mature 25 year old hairdresser is a volunteer for a cancer awareness group nearby. I never knew that until I told her I had BC this past weekend. She was SO totally humble and quiet about her efforts, and she did not make me feel like a BC project. I realize that I can allow her to do her work so professionally and that I do not have to get involved with her cause. (I thought about it) She offered to help me with my hair when needed, in a private room, where hugs and tears are allowed. Wow.
Finally,
What do I tell my family? That I'm fine? I think "fine" may be shortchanging my daughters and sons who were very distraught at my diagnosis. If they go "pink" I will deal out of love but encourage research!
What is my word for me? I don't know yet. I want to be an overcomer at work every day; but I decided after my depressed day that I would no longer be FINE but I will be dealing with it.
How to be Stage 1??
I had a lot of guilt talking about my lumpectomy and stage 1 in the presence of UMX, BMX and Stage 4 ladies. So, I thank you ladies for permission to realize we all started with a shocking diagnosis and many of us still have to negotiate the unknown. There are no roadmaps for BC - how it spares some - how it torments others - how it destroys. I love the fact that some of you haven't seen BC for awhile but still come here to talk. I have learned so much from you.
Hugs to all today. -
I plan on wearing my avatar tee-shirt a lot in the coming weeks...
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what stupid is my college books store sells breast cancer crap- like magnets and pink highliters- i wanted to ask what if any of the money you get goes towards anything breast cancer related- probably none.
I am going to do the cancer walk, not becuase i feel like a survivor but because i am me
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