The Bell

Advocacy 3 Minutes

There have been some blog posts disseminated recently about the use of the bell to celebrate the end of treatment in infusion or radiation centers. The vitriol displayed by many has been a surprise to me. As with many elements of the experience in #CancerLand, so many people have strong opinions, yet it is the way that the angst gets personal is still surprising to me.

The divisions among those of us dealing with breast cancer is so sad to me. We are all dealing with breast cancer, it is an awful terrible no good experience. Yes, some people struggle in different ways. Yes, some of us are going to die of breast cancer. We will only accomplish more if we join our voices, join our resources and work together.

The bell has become one of those things that seems to divide the early stage and metastatic communities.

I first learned of the bell when we thought I was Stage II and my oncoytype score had come back high enough for me to need to do chemo. The binder about chemo that my first medical oncologist gave me had a brief paragraph about the bell. I was honestly focused on getting through treatment as quickly as possible and getting back to “normal” that I didn’t pay much attention. I don’t remember hearing the bell being rung during that first treatment of AC when we still thought I might get to ring the bell at some point.

After we’d learned I was actually Stage IV from the beginning and I heard the bell ring during chemo, I simply sobbed. The bell became representative of what I would never do, celebrate the end of treatment. I remember vaguely that a nurse suggested that I ring the bell on the last day of my AC treatment to my sister and she deflected that question carefully because we were all aware that the end of that particular chemo wasn’t the end of treatment.

I’ll never be done with some kind of treatment.

I might be done with various parts of treatment at times, but the end of a treatment usually signals that my cancer is growing, that I have to switch to another medication to handle the progression. Ending a particular treatment isn’t something to celebrate for those of us with metastatic disease, it is a warning, a reminder that Stage IV metastatic breast cancer is terminal.

Ending a treatment usually = progression

I honestly don’t begrudge anyone their parties, their celebrations for whatever reason. Ending a difficult time is worthy of a celebration. I know how hard chemo is. I remember how difficult radiation is and I had far less radiation than most. I get it, I do.

I think the issue is that those of us who are lifers don’t want it rubbed in our faces. We don’t want or need the visual reminder that we are different, that cancer will kill us. For us, the celebrations are usually smaller, quieter, not as ostentatious, not as visible. I think that’s partially because the checkups are more often, the scans more frequent and last longer. I think it’s also partially because we are shoring up our energy, our funds, our resilience for the next encounter.

We’re tired. Lifelong treatment is exhausting.

It is my opinion that some separation is a good thing. My infusion center is pretty big and I usually ask for a bed. The chairs, you see, are at the front. The beds are usually reserved for the sickest patient, the ones who come from a hospital bed. Even though my monthly infusion is only for 30 minutes, I don’t mind laying down. And the bonus is that the beds are the farthest from the bell you can get.

Is that the right answer?

I’ve heard of others asking for additional signs to be put beside the bell, to remind metastatic patients that they can ring the bell too at the end of infusions. That’s a different answer. Maybe that’s the right answer.

Maybe the answer is empathy. Understanding that others have different experiences. Understanding that celebrating a milestone too loudly can affect others. Understanding that celebrating a milestone is a demonstration of hope, of looking forward and leaving bad experiences behind.

Whatever the overall answer, I’m content to sit in my spot towards the back, away from the bell, and leave others to their celebrations. My version of empathy is to keep to myself during those celebrations and not to remind each of them that they have a 30% chance of becoming me, of developing metastatic disease despite finishing treatment, despite ringing the bell.

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

20 thoughts on “The Bell”

  1. I agree. As you may have seen from my Tweets on this, I personally don’t like the bell. But I can accept that for others it is a positive. I have heard that people are attacking others over this issue, but I have not personally seen such attacks. Regardless there is room for a difference of views and certainly no reasons people should be attacking others over it. Thanks for adding perspective.

    Liked by 1 person

    Reply

  2. So very sad all the way around. Sad that we can’t enjoy their celebration because we know what we know. Sad that some feel they shouldn’t celebrate because we can’t, and maybe they’ll be back. Sad that we’ll never end treatment for a good reason. 😢

    Liked by 1 person

    Reply

  3. An engaging and thoughtful post, as always. I may or may not post some of the ideas on the bell that run wild in my thoughts. There is no bell where I receive treatment. I always try to give myself a little boost on treatment days (treat, walk, friend, etc.) because it’s important to find ways to celebrate whenever we have the opportunity.

    Liked by 1 person

    Reply

  4. This bell business makes me so angry. Angry at the oncology centers for not thinking at the very beginning “ we have patients who are terminal, this is in bad taste and so insensitive!”
    I mean , if it was just a cancer ward for early stagers ( for now) then that would an appropriate way to end treatment.
    I wonder if ringing the bell has any ulterior motives with the hospitals… some kind of message that says “ we save lives!”
    I think they should just admit the bell is a bad idea and do away with it.
    When my kids were young and had birthday parties, the rule was to invite EVERYONE in the class, so no one would feel left out.

    Liked by 2 people

    Reply

  5. I guess the right answer for me would’ve been a more quiet announcement. Instead of a bell perhaps a sign, or ribbon. It is a painful reminder of what will never be. Yes. We are all survivors but for some it comes with a future that’s not guaranteed. Live and light to all who carry the burden of this terrible disease.

    Liked by 1 person

    Reply
  6. Pingback: Weekly Round-Up: The Social Media Day Edition | Journeying Beyond Breast Cancer

  8. wow, I never thought of it that way before and I am sorry if people like myself dont consider those that you describe in your post. I have been focused on ringing the bell, even though I wont be finished with my journey, I stll have surgery and radiotherpy to go, so for me ringing he bell is to signify that my chemotherapy for now has done but I will be thoughtful of those around me on that day and I will hold your words in my mind and my heart. x

    Liked by 2 people

    Reply

  9. When I finished my chemo I didn’t ring the bell because I knew that I wasn’t done infusions for at least another 6 months.I did get 30 rounds of radiation after my BMX and I rang that bell because I was so glad to be done with that neverending painful burning! I made it through that and it sucked! Everyone puts off radiation as being so easy .I hated it! And was glad to be done especially after a 3 week day due to the beam being down ,having to adjust for 2 hidays and then getting 5 additional treatments added on.It may seem like nothing but as others were ringing the bell before me it was all I had motivating me I just wanted it to be my turn, because that phase of my treatment was over! I’m still getting infusions every 3 weeks but I’m glad I had a bell to ring to show that yes that was done move forward!

    Liked by 3 people

    Reply

    1. I hear you. For early stagers who are truly done with treatment, I get that the bell is extremely significant and important. I’m sure I would have been ringing the bell if I was an early stager. I do think it’s important to recognize how others are affected and that’s why I’ve tried to raise awareness where I can. Thank you for reading and commenting!! Love and light to you. 😘

      Liked by 2 people

      Reply

  10. I’m not a fan of the bell being rung in front of everyone. I am okay with you ringing it, I just don’t want to hear it. There seems to be an impression now that cancer is a “growth experience” that you fight and survive and come out stronger. That is not my story and will never be my story and it hurts to be reminded of that. It hurts enough that I am in that infusion room with people up to FOUR DECADES older than I am, I really don’t want to see them celebrating their survival when I know that I will be leaving 3 kids motherless. I know that the stats on cancer are changing, but some of us still die young from this. Please, celebrate, but it’s insensitive to ask me to be a part of your forced cheering squad.

    Liked by 2 people

    Reply
  11. Pingback: Medical Update, third of 2021 – No Half Measures

Leave a comment