Still in Treatment Bells

Yes, the title is correct. I have read a number of End of Treatment Bell posts over the years. This one has a twist.

Today’s post may be unpopular and upset women and men dealing with metastatic cancer. I am sorry if my words cause distress. There is enough of that in your life and mine. I welcome respectful comments and will respond respectfully in turn.

For those readers who aren’t familiar with an end of treatment bell, it is a bell rung by patients at the end of a final treatment to celebrate the occasion.

If you are a new reader, it’s important to know I’ve had metastatic breast cancer from the start of treatment back in 2012.

Prepare for Controversial View #1.

There was a time when I actively advocated for bringing one of these bells to my treatment center. I supported it for others even though I had metastatic cancer. Even if I would never ring it, I wanted others to have the opportunity. I truly didn’t think hearing it would bother me. I thought I would equate the sound as hope for someone’s future. My intentions were good. I didn’t understand the arguments I read from others because my perspective was different. My plan was to set benchmarks in time and ring it purposefully at those points in time.

I didn’t understand.

I have read. I have reflected. I have changed my opinion. I am deeply sorry I haven’t understood and that it’s taken me longer to get where so many are in their beliefs. I was wrong. I am grateful that the idea for a bell was rejected.

I was told no for the exact reasons so many others have mentioned: Some patients would never get to ring it. It would not be sensitive to their needs.

I have read other reasons on social media from those who do have to hear the clanging of end of treatment bells where they receive treatments and these brief accounts have been gut-wrenching to read. There is trauma in the sound that is beyond painful and harsh. One description compared it to being kicked in the teeth. My perspective has changed. Hearing these bells now would make me feel discouraged, depressed, and envious. One person’s celebration would be my despair. I would not feel good about these feelings or thoughts.

I believe the initial intentions of these bells were good, but also that the decisions were not well thought through and inclusive of all patients. The repercussions have not been positive for everyone. I haven’t read anything about end of treatment bells being removed from treatment areas that have them.

Prepare for Controversial View #2.

Ring the bell.

Ring the bell every chance you get. Ring it when you arrive at your office visit appointment, after your office visit, when you enter the treatment area, and when you finish treatment.  Ring it SEVERAL TIMES DURING ONE VISIT. Ring it because it wasn’t intended for us. Ring it because we weren’t valued in the decision.

My point is if they can’t see us (those with metastatic cancer often are the unseen patients in news or fundraiser campaigns), then we are going to be heard every opportunity we have.

Change the meaning of the bell. It would either become meaningless because we are removing its purpose . . . or something else could happen. Is it completely crazy to think over time a shift could occur where the only people ringing the bell would be stage IV metastatic patients? Could ringing it become a reminder that 30% of patients will become metastatic if more research isn’t dedicated to more effective treatments, medications, and a cure for us? Could it be recognition that 10% are already metastatic at the time of diagnosis?

There are die-ins. Protests. There are many forms of advocating for change. A Still in Treatment Bell could be one more way to use our voice.

Does changing the word end to still make you feel differently or pretty much the same?

Ringing the bell would likely not be welcomed. Good. Let more research happen and then maybe no one has to hear it ring. I really don’t want to ring it but I will ring it with a vengeance if one ever appears where I receive treatment.

I imagine I’d shout, “MORE FOR STAGE IV” as I ring the bell. No rhyming poem. No plaque. No explanation. Just a clear and emphatic shout for what is desperately needed.

I imagine I might be told:

“Please don’t ring the bell. It’s for end of treatment survivors.”

“That bell is not for you.”

“The other patients feel uncomfortable with the constant ringing.”

“You are ruining it for other patients.”

 

How I’d hope to respectfully respond:

“Wouldn’t it be something if no one had to ring the bell? More research is needed for all of us. MORE FOR STAGE IV.”

 

Cancer has changed me. There are times I feel like I’m going nuts. Maybe I need to embrace it and live more of the way I feel.

What does that mean?

It means I should bring my own damn bell to ring at treatments. Maybe I will.

 

Consider responding:

  • How have conversations you’ve had been received in places where bells are present?
  • What are your thoughts on still in treatment cymbals?

Author: Kristie Konsoer

I am a breast cancer survivor, living well with MBC since 2012. This blog is a place where I can share thoughts and ideas on how I feel perceptions on cancer must change, and how I am finding a way to live with strength, hope, meaning, resiliency, humor, and hopefully a little wisdom, all while living with what I call a Stage V lifestyle. For me, there is no Stage IV. I am Stage V. I am powerful, I am well, and I am relentless.

4 thoughts on “Still in Treatment Bells”

  1. Ringing bells are closely associated with celebrations, milestones. Celebrating every milestone becomes pretty darn important when ones life expectancy is cut short. With that said, I suppose I’m still in the anti bell ringing camp generally. My cancer center has a bell outside the infusion room but it’s so loud, you can hear it all over the building.

    Like

    1. I haven’t heard the bell ring and I don’t know how I would feel if I did in real life. I know I have tuned people out – sometimes successfully and sometimes not. I don’t know if I could do the same with a bell. I think I’d be compelled to ring it and shout stuff, then reflect on if it made me feel better or worse. Thank you for commenting. Peace.

      Liked by 1 person

  2. You express the pros and cons of ringing the bell as a celebration to the end of chemo but also your distress and anger over its exclusivity to a “lucky few”. The scenario reminded me of an organization that played a lullaby overhead whenever a baby was born in their hospital. Everyone who heard the tune was “warmed” by the arrival of new life into the world. However, at the same time there was a woman experiencing a miscarriage who was saddened and angered by the lullaby. It reminded her of her loss and what she could not have at that moment. She addressed her concerns later to the organization and the procedure was changed to not play the lullaby at that time when other patients were experiencing a fetal loss. Both views were respected in this scenario.

    In real life being empowered to express what we need to change is critical to our well-being. Not at the expense of others …but in collaboration with them.

    Like

    1. This is so well said and an excellent example that both illustrates and honors different feelings. I saw an interview recently where a bell ringer supporter and opponent were interviewed side by side. It was such a positive and beautiful discussion. Your comments remind me how we must continue to have empathy with one another. You are so right that collaboration is the key. Thank you so much for responding.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s