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Im not on a "journey" and Im not a "warrior." Who is with me?

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  • Terricka
    Terricka Member Posts: 1
    edited December 2020
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    I am with you! I don't see this as a fight. That is too much of a burden.

  • olma61
    olma61 Member Posts: 1,024
    edited December 2020
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    Not to veer off the topic at hand, but that info on black women and Herceptin really struck me too. Turns out BCO has an article on this disparity. Since this was a retrospective study of the SEER database, the reasons behind the gap are not known, but the writers are speculating that it may well be due to payment issues, at least in part, as illimae says.

    Since there's a gap with older women in generaltoo, they mention not having a Medicare supplement and not being able to afford the co-pay as a possible reason. Since there are a good number of Stage 1 women in that table too, I'm wondering also,if some patients are declining chemo and maybe doctors aren't pushing hard enough when they do.

    https://www.breastcancer.org/research-news/older-and-black-women-not-getting-herceptin

  • 2019whatayear
    2019whatayear Member Posts: 468
    edited December 2020
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    Olma I wish we had a like button on here. :-)

  • illimae
    illimae Member Posts: 5,607
    edited December 2020
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    Olma, thanks for doing some digging. I really wish these findings would include more detailed info. I hate seeing the disparities but how can we even begin to try solving problems without the root cause, it’s frustrating.

  • shar2020
    shar2020 Member Posts: 196
    edited December 2020
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    I have learned a lot from reading through this thread. Thank you, everyone!

    I have referred to my entire life as a journey-not in an enlightened, new age way, but in reference to moving through life and getting from one point to another. Now that I know the wording may irritate people, I will be mindful of how/when I use it.

    Oh, pink...I avoided it since diagnosis and then as soon as I started wearing my dark winter coats, people were suddenly calling me “Sir". Bring on the pink! Bring on the fushia! I'm not letting cancer ruin a perfectly great color. (I know it's not the disease that has done that. It's all the awareness campaigns and products that associate pink with breast cancer.)

    Katie Couric brought considerable attention and awareness to colon cancer and the importance of early screening, but how many people know the color associated with colon cancer? Or any type of cancer? Pink is not required for effective educational programs and awareness campaigns.

  • flashlight
    flashlight Member Posts: 311
    edited December 2020
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    I was looking at the history of the pink ribbon. As TIME explained, Ford and Rockefeller's candidness helped many others confront "a little understood disease that was once discussed only in whispers." Other notable women who came forward about their experiences with breast cancer in the 1970s included writer Babette Rosmond, actor Shirley Temple Black, chef Julia Child and NBC news correspondent Betty Rollin.

    During the 1980s, AIDS eclipsed cancer as the major health crisis commanding national attention. AIDS activists became known for their confrontational style of politics, as groups like ACT-UP staged theatrical guerilla street protests in order to lobby for government research money. Their use of symbolism, in the form of a red ribbon, and their demands for increased federal funding influenced the next wave of breast cancer activism.

    The pink ribbon became a symbol of breast cancer awareness as the result of efforts by Self Magazine, the cosmetics industry and the Susan G. Komen foundation in the early 1990s. The concept was first inspired by breast cancer patient Charlotte Hayley, who individually distributed thousands of peach colored ribbons in her community, along with cards that encouraged funding for cancer prevention. When representatives from Estee Lauder and Self expressed interest in her idea, Hayley turned them away because she was worried about the cause becoming commercialized—so they changed the color of the ribbon from peach to pink. The first pink ribbons were handed out at the 1991 Susan G. Komen Race for the Cure in New York City, the same year that saw the founding of the National Breast Cancer Coalition.

    Today, activists are pivoting their focus from awareness and early detection towards saving the lives of patients who have progressed to advanced stage IV disease, or metastatic breast cancer. And breast cancer activism has evolved from individual patients voicing their own experiences, to the formation of community support groups for cancer survivors, to political organizing for a cure. It has grown from a small grassroots movement to a widespread network of professional advocacy. Critics point out that, along the way, the struggle against breast cancer has been exploited by companies co-opting the pink ribbon to advertise their own products or bolster their image. But before all of that, it was a movement about giving women the courage to speak openly about their bodies, and the agency to decide their preferred course of treatment when faced with a serious illness.


  • olma61
    olma61 Member Posts: 1,024
    edited December 2020
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    flashlight, that’s a good reminder...similar to the word “survivor “ being used instead of “patient” ...at one time, that was considered a step forward, similar to calling sexual assault survivors, survivors instead of “rape victims”

    I am not keen on being called a “cancer patient” outside of my doctors office...even though, for me in Stage IV ,being called a “survivor “ is kinda dicey, too....I prefer to think of myself as “surviving” a day at a time versus being “a patient” for the rest of my life.

  • mountainmia
    mountainmia Member Posts: 857
    edited December 2020
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    Olma, I think the only time I've called myself a "cancer patient" was when my husband took me to the emergency room at the end of last year (2019.) I was diagnosed and treated in 2019, finished treatment in September. But on 12/30 I passed out, hit my head, had concussion. When he rolled me to the check-in counter at ER, first thing I said was, "I'm a cancer patient." I figured they should know that up front.

  • Bennette
    Bennette Member Posts: 10
    edited December 2020
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    I just joined here mainly because I saw this post. It is a whole range of emotions and I'm tired of trying to be positive for others. I tend to be a caretaker anyway, so am really trying to watch this. I grew up with that whole "up by your boot straps", "chin up" bull shit and it didn't serve me well. I'm newly diagnosed and am already feeling some of the my cancer isn't that bad, glad they found it early stuff.

    I have a lumpectomy planned for next Friday. I'm not even sure what half the acronyms are. It's really overwhelming.

    So I have found my people. No pink hats or ribbons for me either.

  • moderators
    moderators Posts: 8,069
    edited December 2020
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    Welcome, Bennette. It can all be so very overwhelming, and we hope this community can be a source of support and encouragement and a place to express yourself and all of the emotions that come with a diagnosis. Best of luck on your lumpectomy, we hope your recovery is swift! Please let us know how it goes, we're here for you.

    The Mods

  • 2019whatayear
    2019whatayear Member Posts: 468
    edited December 2020
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    welcome to the club we’d all love to see disbandBennette! Yes it’s a whole new language to learn -

  • nopink2019
    nopink2019 Member Posts: 384
    edited December 2020
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    MochiPie - You are not the odd one out! While I'll never be finished with treatment, I do not expect to gain enlightment. One of the 1st things I did when I when I could gather my senses after MBC diagnosis was to write a sealed note to my DH that my obit shoulld not include "bravery", "battle", "journey" etc. I will die of breast cancer. Fact.

    LOL re:suing the travel agent! I'll remember that line the next time someone mentions I'm on a journey. And brave for going through treatment? I'll tell them the option is to stop treatment, that's what will take bravery.

  • Nel
    Nel Member Posts: 597
    edited December 2020
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    Love this thread and have only read about half the posts. This is not a journey for me, I am not a survivor (have stage 4 and will eventually die from BC),I will not loose a battle ( it is not my fault I will die, research has not been done or caught up with what I need) and god forbid, I am not an inspiration!!! I am a woman living with breast cancer, the best way I know how. Some days are better than others physically and mentally, but I am doing pretty well.

    Have I changed - I care much less, and I never cared much, about what others think. I speak my mind more frequently and use the word fuck more frequently and was always a part of my vocabularly. I am more me and I try to be more present in the moments

    I am doing the best I can, as we all are in what is a challenging situation

    Be well

    Nel

  • traveltext
    traveltext Member Posts: 1,052
    edited December 2020
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    nopink, this is the absolute truth: “I'll tell them the option is to stop treatment, that's what will take bravery.“

    Another thing to remember is that you don’t fail any treatment, the treatment fails you.

    A few years ago some BCO folks put up this site: http://PinktoberSucks.com



  • micheleh57
    micheleh57 Member Posts: 19
    edited December 2020
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    Thank you! While I'm NOT averse to the use of the term "journey," I sure do not like the term "survivor." And forget "warrior."

    I had a lumpectomy in October and am in the middle of radiation. My experience with cancer will take me into AI in January and

    I will move through that treatment for 5 years.

    I'm not going to die of breast cancer. The possibility of recurrence for me is like 3%. Which is excellent.

    So I'm likely going to live for another 20 to 30 or maybe 40 years. (I'm 63) God willing.

    I really do hope we can update the verbiage and terminology, particularly as we are now in a much better place with *treatments*

    which mean life and better life and long life.

    Yes, I'm sensitive to the whole experience and the grades of experience and severity.

    But the more I learn and the more women I meet up with who've been through this, the more I do believe those terms have just about - almost, on the edge, tipping over, going there in a minute - outlived any real usefulness.


  • angieb92
    angieb92 Member Posts: 291
    edited December 2020
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    I love this thread. I have weighed the many labels given to folks like us and none seemed to fit. Verbiage was very important to me during my cancer experience.
    I hesitate to call it a journey because, as was mentioned before, we’re all on a journey anyway - cancer was just the surprise wrong turn down a road with few streetlights.

    When diagnosed and before I met with my breast surgeon/oncologist, I referred to my situation as “I have been diagnosed with breast cancer.” After I received my treatment plan, I referred to myself as “I am in treatment for breast cancer.” This helped me realize that I was moving forward in fighting breast cancer

    Now that active treatment is over, I can’t quite get the “survivor” word to flow as easily. Same with “warrior.” I may look at myself as a warrior for fighting through chemo, surgery, and Kadcyla- but I survived more than just that. I pulled myself out of despair many, many times.

    I am still on my life’s journey. I am back on a well-lit road. I still can’t all myself “survivor” or “warrior” so I will just call myself Angie. Angie, who went through treatments for breast cancer.

  • mountainmia
    mountainmia Member Posts: 857
    edited December 2020
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    Angie, that's exactly how I phrase it. I was diagnosed with and treated for breast cancer.

  • 2019whatayear
    2019whatayear Member Posts: 468
    edited December 2020
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    I think I like the term Ned'er. No evidence of disease and may it stay that way. :-)

  • WC3
    WC3 Member Posts: 658
    edited December 2020
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    If anything, the doctors and chemo nurses are the warriors...I guess I'm kind of the battle field.

  • moth
    moth Member Posts: 3,293
    edited December 2020
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    lol WC3. MO -> chemical weapons; RO -> nuclear weapons; radiology -> reconnaissance; IR -> spec ops; BS -> combat; GP -> staff sergeant

    nurses -> communications + GI + mechanic + logistics


  • rain88
    rain88 Member Posts: 160
    edited December 2020
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    Happy

  • spookiesmom
    spookiesmom Member Posts: 8,176
    edited December 2020
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    ❤️❤️❤️❤️Moth.

  • illimae
    illimae Member Posts: 5,607
    edited December 2020
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    Thought this group might appreciate this one, lol

    image

  • minustwo
    minustwo Member Posts: 13,116
    edited December 2020
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    Oh yes !!! That's a great one.

  • traveltext
    traveltext Member Posts: 1,052
    edited December 2020
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    illimae, so true. And each time you pass on the disease via your genes, it gets to die again.

    Happy Holidays everyone. Stay safe and fingers’ crossed for a good 2021.


  • angieb92
    angieb92 Member Posts: 291
    edited December 2020
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    Love it! Happy Holidays!!

  • sunshine99
    sunshine99 Member Posts: 2,635
    edited December 2020
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    I love it. I should put that in my obituary: "She died, but the cancer died, too."

    Perfect!

  • mochipie
    mochipie Member Posts: 45
    edited December 2020
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    It’s perfect.

  • cake8icing
    cake8icing Member Posts: 23
    edited December 2020
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    you are safe with me on this. I hate all that survivor/pink ribbon/ this will make you stronger crap. No one asks for this and we all simply deal with it the best we can.

  • Crojas1221
    Crojas1221 Member Posts: 5
    edited December 2020
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    This is such a refreshing (and funny) thread to come across. I'm so uncomfortable with the language of positivity, not just around cancer, but in the general zeitgeist. It's good to be positive. Healthy, yes. But there comes a time for negativity and outrage and just plain feeling like shit. Why not? I'm a human not a perfectly encoded happy robot.