...For Whom the Bell Tolls

Known for his writings that included Elizabethan and Jacobean drama, John Donne wrote his famous Devotions Upon Emergent Occasions during the latter part of his life. Facing his own serious illness, Donne became more aware of belonging to the whole of the human race. He added a personal belief that the death of any individual creates a loss because it has taken something away from humankind.

A well known tradition

In 1996, MD Anderson Medical Center and its renowned cancer program introduced the concept of Ringing the Bell. Surrounded by family, friends, and the cheers of the oncology staff, this tradition celebrates the end of a course of radiation or chemotherapy. Indeed, many patients say they love the graduation-like ceremony and the sense of closure it gives them.

As a new cancer patient, I also looked forward to the day my treatment would end. So this ceremony seemed an excellent way to celebrate a passage and the return to health. But unfortunately, on the very day I completed my first six months of chemotherapy, I was immediately scheduled for a return to the cancer center to start immunotherapy. This event became a striking reality of life with advanced ovarian cancer.

Does the bell bring comfort?

Come to find out, I am not alone in raising a concern. Standing before the staff, I rang an enormous Chinese gong and thanked everyone for being committed to my health outcome. However, I quickly experienced sadness as I realized that my next chapter was beginning. The truth for those with advanced ovarian cancer is that the battle is long and arduous. And, it does not always reach a happy ending.

Research findings

In 2020, the International Journal of Radiation Oncology, Biology, and Physics published an article that studied 200 cancer patients' reactions to ringing the bell. One-half of the patients were completing treatment. However, half needed additional treatment. This group stated that ringing the bell created stress of a painful memory.

In looking further, a December 2018 JAMA Oncology article also added some weight to this finding. While this highly symbolic ceremony may be joyful for those ringing the bell, "not everyone within earshot feels the same."

The practice has received criticism from advocates who note that there are other patients whose treatment may not end on a positive note. For these patients, hearing the bell ring can arouse feelings of anger, resentment, or depression. As a result, ringing the bell will hardly be an option for them.

An irony we all need to face

After experiencing four series of chemotherapy, my wish is that we use this information to better support our teal sisters in facing the reality of this disease. Thank goodness many of us have found a voice as we read articles and exchange information.

While I feel validated that others have a similar experience, the tradition of commemorating the end of treatment is ultimately intended to support. Perhaps it's time to stand on a soap box and encourage the treatment team to lead the way. I can appreciate the need for staff to gain a sense of accomplishment. Day in and day out, they face patients who tolerate the introduction of chemo agents.

I watch the nurses struggle alongside me as I make frequent return trips to maintain hydration and hope to reduce common GI side effects. Finally, when unable to find a vein, my nurses walk away in distress. Perhaps we all need to be truthful about the outcome.

Continuing to live

I often ask myself why I continue the painful toxic experiences that come with life as a cancer patient. For me, the answer is simple. I am not ready to give up. Instead, I hope that in doing my best to tolerate treatment, I can maintain hope to extend a life full of quality time.

Fighting for our lives is perhaps the most challenging of tasks. Encourage conversations that provide clarity to this experience. We no longer need to be alone if we face our affairs honestly and openly.

You may recall that each of us represents a light. When life starts to swell over us, we still have a spirit that reminds us who we are and our value to ourselves, our family, and the world. Honor that being within you.

"Do not go gentle into that night. Old age should burn and rage at the close of day. Rage, rage against the dying of the light."
-Dylan Thomas

Editor’s Note: We are extremely saddened to say that on August 9, 2024, Ellen Reed passed away. Ellen’s advocacy efforts and writing continue to reach many. She will be deeply missed.