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Ringing of the bell. A perspective from someone with MBC. Please share yours!

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moderators
moderators Posts: 8,204

Thanks to Jaimee for sharing her perspective!

Please share yours below!

Does your treatment center do this? If so, how does it make you feel? Share your thoughts.

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  • mkestrel
    mkestrel Member Posts: 164
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    There is a bell in the hallway by the door with a poem about finishing treatment and moving on. I have mixed feelings. When I finished radiation there after my first surgeries for breast cancer, I rang the bell with a couple of friends. Some of the treatment team clapped and gave hugs. I made them toffee candy and thank you cards. I had the illusion that I was finished, but kept coming for follow up visits. Then two years later the volcano blew and the metastatic cancer that was probably already there when I rang the bell took over my life. I have to walk past the bell to get to the other room with the treatment chairs, knowing my treatment won't end. Sometimes I want to smash the bell through the wall. I heard it ring and everyone cheer while the doc was telling me about changing my treatments because of progression. It wasn't a great feeling but I also hoped the person had a happy day after weeks of daily treatments. Maybe they should put it where it's not so loud, away from the exam rooms. I also have the opinion that there is too much pinkwash about "fighting and beating" cancer, early detection being pretty much the "cure" and not enough attention to close followup including scans after finishing the usual treatment for early stage cancer. Nobody wants to think about the supposedly small percentage who end up with metastatic disease. I certainly didn't think it would happen to me. It was early stage and I had all the treatment recommended. I'm in my 40s and had no other health issues, no genetic mutations. The 13% recurrence risk wouldn't be me; just think positive ring the bell and move on, etc. Illusion, mirage. Now doc says we treat this like a chronic disease. I had radiation again this year but didn't ring the bell. There is no finish bell now. There is nothing wrong with celebrating the end of some stage of treatment though. Anyway, mixed feelings.

  • moderators
    moderators Posts: 8,204
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    Thank you for sharing your perspective as well, @mkestrel! This is certainly not a cut-and-dry discussion, so we appreciate everyone's thoughts. Hugs to you! ❤️

  • dancemom
    dancemom Member Posts: 404
    edited September 2023
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    The day I went in to finish my nearly 7 weeks of Rads, I brought fancy chocolate to my tech team as a thank you. While I was changing, someone rang the bell after much encouragement from the nurses (you finished! You deserve this.. ). After my treatment was over, I was asked to ring the bell. I said I wasn't comfortable celebrating "completion"and I hope to leave all treatment options open for a long time! They didn't push it.

    The bell made me very sad. It reminded me that my de novo diagnosis means constant treatment. I'm happy for people who have the hope that the bell is an end to that treatment. But some of us were never given that stage 1,2 3 hope. I like that idea of having it be in a different area, to celebrate with the team if you feel so inclined.

    Edit to add: I agree about the "fighting" and " early" pinkwashing. I'm 100% sure those do make a difference for many, but it's not the whole story. I had regular annual mammograms, no genetic factors, healthy diet, breastfed for a total of 5 years, no Hormonal birth control, loads of exercise...

  • moderators
    moderators Posts: 8,204
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    Thank you for sharing, @dancemom ❤️

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,956
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    I had rads to my bone met and they had a bell there as well. To be honest, I actually can’t remember if I rang it or not, though I’m inclined to think not. Being stage IV de novo, I understood that my path would not end and there would always be treatment. But I also understood that those with better prognoses should have that special moment if they want to. I’m in rarefied stage IV territory (12 years NEAD with a generally easier time of it) but I don’t want my mbc to take away joy from others.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    I rang the bell after the first time and really thought I would be done. I rang the bell the second time I felt like a fraud. Now I have it again, and if there is rads in my future I won’t ring it again.

    The sense of relief for finishing radiation. It’s a great feeling, but when you have to go back again, it’s not so great all the techs and everybody rah rah you did it no, no more for me.

  • elderberry
    elderberry Member Posts: 1,065
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    There is no bell at my cancer centre. If there is one, I have never seen it nor heard it rung. One woman came in with a hand made sign about her "last treatment" and she had pink balloons (baarf) and posed with the nurses. I was happy for her and hoped it really was the last treatment.

    Even if I had what I thought was my last I would not ring a bell. Bells are for ships going down or the last call at an English pub.

  • olma61
    olma61 Member Posts: 1,025
    edited September 2023
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    Other people celebrating the end (hopefully) of their treatment takes nothing away from me. Hell, I am happy for anyone that can go on and live their life and put cancer (and the lovely treatment for it!) behind them. I made a comment on here one time in a discussion of “the bell” about a gentlemen who was in the infusion room with me - when his infusion was over he said “Today is my last day of chemo!!” And no one really said anything, a couple of nurses said oh that’s nice, kind of blasé about it….I told him Congratulations with some enthusiasm, I felt bad that he was pretty much ignored. It does feel appropriate to celebrate putting chemo behind you if you can.

    My first two treatment centers did not have a bell, that I know of, but the other day at my infusion I do think I heard a bell in the background and some talking so maybe someone was celebrating. I would not have been aware of what that sound might have been had I not read about “the bell” online.

    A milestone for me was ending taxol and moving on to just H&P every three weeks and I was happy to put THAT behind me. If there was a bell or any kind of celebration for that, I would have rung it or participated in whatever it was. My sister and I did go out and have a celebratory lunch that day, even though I was very aware that things might still be haywire and that I could have chemo again in my near future.

    If doing away with the bell did anything to further a cure for us metastatic folks, I would be in favor of doing away with it. But it doesn’t change anything for me whether people ring it or not. IF those who can ring it like it, I am happy for them.

  • wondering33756
    wondering33756 Member Posts: 3
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    They do not have a bell where I go, or else i have not noticed it.
    I think i agree with others who think maybe it should be stopped altogether, Or maybe moved to some other area, not sure, but i understood the feelings of the others above. Made sense to me.
    It was easy for me to understand how upsetting hearing that bell could be for someone who also had thought it was their "last" treatment, too. Sending hugs, wish i could help.

  • rebzamy
    rebzamy Member Posts: 49
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    Bells were not a thing when I had my treatment back in 2007. I am pleased they weren't a thing because I wouldn't want to ring it knowing that some people having treatment were on treatment for life and wouldn't get to ring it. Even more so now because my husband has terminal cancer and won't get to ring it. Not that I've seen one at all in the hospital he is being treated in! I'm in the UK by the way, and I do know that some hospitals do have it. People can leave the hospital and celebrate with friends and family away from the hospital setting.

  • olma61
    olma61 Member Posts: 1,025
    edited September 2023
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    Hey wondering33756, I just saw your signature and wanted to let you know —- though I am not on Verzenio, the Herceptin & Perjeta I am on also causes diarrhea and the Imodium works pretty well for me, in fact sometimes I hesitate and wait til I really know I need it because it winds up getting me constipated.

    The only time Imodium has not worked for me was when I was having serious ”D” due to heavy duty IV antibiotics to treat an infection from an animal bite. But for my treatment-caused diarrhea it works great. Immodium has gotten me through trips involving four-hour airplane flights without any “mishap” so I hope it will work for you too, if you wind up needing it.

    Another thing for me is - after being on these drugs a couple of years my body seems to have adjusted and I do not experience the side effects as intensely as I did in the beginning.

    Hope this info helps to allay any anxiety you might feel, a little bit anyway, and I apologize to the mods for going off-topic in this thread. Back to the bell discussion!

  • dragonfly71
    dragonfly71 Member Posts: 1
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    After the second round of radiation for pelvic bone MBC, i was encouraged to "ring the bell"…and as I did i was weeping. Not tears of joy but oh so sad because this was going to one of many treatments for the rest of my life. MBC is a spectacularly isolating disease… you are living with this forever. "When are your treatments ending?" I'm asked…and I just have to say not until I die. Look, it's great for a breast cancer survivor to ring their bell..but it rings so hollow for us. Too many women will be re-diagnosed soon after with MBC. It's bitter-sweet.

  • brandie1
    brandie1 Member Posts: 2
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    I am newly diagnosed: straight to stage IV. We were at the oncologist for only the second time. There was a celebration, about 20 family members in the small room, and a ringing of the bell. The nurses even told patients what the crowd was for. It is important to note that this effects the families of patients just as much. My spouse was angry and crying realizing this would never be our family.

  • elderberry
    elderberry Member Posts: 1,065
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    brandie1: I hear you!! Fortunately, I have never been in earshot of bell ringing. Maybe my centre doesn't do it. But I do remember a woman with balloons and flowers and posing with nurses. She was holding up a sign saying "Keep Calm. This Is My Last Chemo" . There was too much pink. Pink cardboard, pink balloons, pink flowers.As she was leaving she said to me, looking joyful as she spoke " I am having surgery next month. I am Stage III C" I really hope she doesn't find herself back in the centre in a few years time.

    brandi: there is a thread for us De Novo.

  • moderators
    moderators Posts: 8,204
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    Hi @brandie1, Here is the link to the De Novo MBC thread that @elderberry mentions:

    We look forward to supporting you!

    —The Mods