Enby BC - 14 - Bell
The Bell.
A bell is a big deal in the cancer world. An aspirational beacon for cancer patients. A moral dilemma for myself.
The bell lives in cancer centers, proving it’s existence in the unpredictable ringing throughout the day, followed by applause. The ringing is done by a often exhausted cancer patient who has completed their assigned treatment. It’s celebratory, it’s bittersweet, its conflicting.
When I first entered chemotherapy I was adamant that I would not ring the bell. Primarily as an act of solidarity due to my stage four counterparts often being unable to ring the bell due to their treatments often lasting a lifetime. Secondarily due to the idea that ringing it would jinx me and the fear that perhaps one day I will have recurrence and need to do this all again. I held fast on this reasoning until a discussion I had with my AYA cancer support group.
There we discussed the meaning of the bell ring, and how it was a very personal one. I wasn’t the only in my group who was against the idea of the bell. In fact some cancer centers have removed their bells because of what I’ve outlined above. - It’s a highly symbolic object, however it is not equitable or reflective of the cancer experience for a key group of cancer patients. For some stage four patients the toll of the bell is a reminder that their chemo is lifetime, their radiation is not curative, and that there is no tangible ending to their cancer journey until death.
For others however, the bell was a sign of celebration and conclusion. A ritual to bring closure to a gruelling process. To hear the bell ring out was proof that happiness and hope existed in the muted walls of the institution. Amongst the isolation and medicalization humanity lived on. The choice to ring is a very personal one, and if we so choose there should be no shame in doing so; only an allowance of personal joy and relief. To showcase joy as a cancer patient is an act of resistance, a re-humanization within the dehuminzing world of cancer treatment.
To even be able to choose to ring the bell is a powerful thing in itself; in the process of becoming a cancer patient you are stripped of autonomy, at the will of your Oncologists scheme. Well, you can say no to treatments, but the implication is that you will be in pain and likely die much sooner and much sicklier. Anyways, after the discussion I had with my group I was still torn on ringing. As I sat more for my multi-hour chemo infusions I would hear the bell ring out followed by clapping and gentle cheers. A sweet ripple through the sour medicine room. I soon found myself joining in with the applause. And by my final infusion I was warmed up to the idea of ringing the bell, however I was still unsure.
As I sat in the infusion chair on my fourth dose of taxol, and eighth and FINAL dose of chemo I mulled over if I was going to ring it or not. Thankfully I had my AYA support group meetings concurrent to my doses, so I was able to discuss my reservations one final time. My group members affirmed that the choice was personal and couldn’t represent the wishes of others. My attending nurse approached as I swirled in Benadryl drowsiness.
“Did you want to ring the bell today?”. Oh god.
“Yes.” I blurted out.
So much for my strong convictions. One last final beep from the machine. She cleaned me up and led me to the bell I’d passed eight times to get to the poison room. Do I deserve this? Am I an asshole for doing this? What if this curses me and my cancer becomes angrier? Well, it will make a cute hopeful video for the family. I handed the nurse my phone.
I rung the bell violently. This is for all the bullshit these treatments put me through. Everyone clapped, including the nurses. It felt good to do it. And then I peaced out. In the elevator someone asked
“Was that you who rung the bell?”
“Yes, I’m done.” I smiled underneath my mask.
“Congrats” She beamed back.
A man crumpled over, his weight on a cane and his mask askew gave me with side glance with tired eyes.
“I wish I could be done, I never will be.” he mumbled with a biting tone, just loud enough for me to hear.
I exited the elevator and walked outside. And I cried. I cried for myself, for all my suffering, for my relief. I cried for the man who would never be finished treatment, and for all the patients who shared the same experience. I cried for my selfishness and my need to be selfish. It was raining so I fit right in.
My mind on the manner was made up, so my decision to ring the bell at the completion of radiation was a much easier one. In fact it was aspirational through my radiation treatment. I was now able to give myself fully to the person ringing the bell and sit in their joy as I waited in the massive lobby for my radiation appointment. And this time I was able to sit in my own joy as I rung the bell for what I hope is the final time!
Enby Breast Cancer is at CIFF!
So exciting! The short student documentary by Ally Ferris featuring me discussing my experience and my first public appearance post-mastectomy in my drag persona Mx Jendr made it into the Calgary International Film Festival. It’s touching and also weird to watch it having experienced chemo and radiation. Check it out here!
Also my wife scored the soundtrack!
WHAT’S NEXT
Endocrine Therapy Consult - September 17th
Canada-wide VACATION!!! Sept 22 - Oct 14
What I need right now, from most involved to least involved:
Donate to my gofundme
Thank you to all who have donated. I hold a lot of gratitude in my heart for this.
Send positive energy: cast a spell, send a prayer, perform a ritual. Have me and my partner in your thoughts
