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The Rite of Passage

February 2020 Vol 6 No 1
Amy Velasquez, RN, MSN
Palliative Care Nurse Navigator
The University of Kansas Cancer Center
Westwood, KS

Within the oncology world, there is a new controversy thick in the air—“Ringing of the bell.” Historically, when a patient with cancer finishes his or her chemotherapy and/or radiation, the patient has earned the honors of “ringing the bell.” This is a rite of passage and a statement that the patient has completed the chemotherapy, and/or radiation, and has kicked cancer’s butt.

Unspoken Bonds

When patients with cancer are sitting in their “newfound living room”—that is, the waiting room or the treatment chair, they can’t help but make lifetime friends with the other newly bald people and their families. There is an unspoken presence between one patient with cancer and another patient. You can almost feel it.

These people get one another. They understand the 1:00 am organizing of the kitchen because of taking steroids, they understand the midnight alarms set to schedule a medication so they don’t puke or poop on themselves or to keep out of pain. They understand the compulsive handwashing and thousands of hand sanitizer bottles strategically placed all over their house.

They have made a comeback with the “fanny packs,” and have created a fashion statement that it is cool again to be a fanny pack wearer. Day after day they are in the clinic, sometimes for a year, to receive lifesaving medications and/or radiation and get a second chance at living a life without cancer.

Unfortunately, as we know all too well, not everyone gets to live the rest of their years without cancer.

Oncology Nursing

I’ve been an oncology nurse for 20 years, yet I still consider myself in the infantile stages. The oncology nurses from the 1960s to 1980s are the Florence Nightingales of oncology today. They dedicated their soul to their patients. In the past, the oncology nurse’s role was very task-oriented, hanging chemotherapy, ­positioning the patient on the radiation table, following doctor’s orders, and even putting themselves in harm’s way being exposed to chemotherapy and/or radiation.

It wasn’t until the 1960s when clinical trials changed the lives of people with cancer and the role of the oncology nurse as well. The oncology nurse became an integral team member. The nurse began to have an earnest and respected opinion about the patient’s symptoms, and whether the treatment is effective or failing.

Bedside nursing at its best changed the world of oncology nursing forever. They demanded self-governance, knowing that the risk of exposure to toxic drugs and radiation was extremely high when caring for a patient with cancer. Nurses created nursing societies and protocols to protect themselves, because they were not going to stop taking care of their patients with cancer—it was in their soul.

Mike Smith (8/17/1972-1/9/2020), who rang the bell at the end of his palliative radiation.

Bell of Hope

Ringing the “cancer bell” has recently become a hot topic. I have never experienced ringing the bell myself, but I have watched hundreds of people and their family members do so. The bell signifies the end of an era, the completion of the radiation and/or chemotherapy, the start of a life again without cancer. The patient’s family and friends witness the “kong”; staff gather in support. Something is usually said that is meaningful and honest, and then the patient gets to ring that bell.

Having been a part of many bell ringings, it is very emotional. You can see the patient ring the “bell of hope” that the terrible cancer is gone forever, that all this was just a bad dream, and the person can get back to life without cancer. The staff members who have put their own heart and soul into the care of the patient are ever so hopeful that the cancer will never return.

Patients plan for the day they can get to grip the black metal handle and smack the dense gold bell and hear the “gong” bellow throughout the halls of the cancer center. These halls are the place that allowed them to take control of an uncontrollable situation—cancer. The loud gong bellows throughout the treatment area, they are done with their 8 cycles of chemotherapy and 30 radiation treatments. They have conquered cancer.

But some people diagnosed with late-stage cancer will never complete treatment. They may have treatment for years—we hope they will never be done with treatment, because when they are done, this means they have passed away.

Let me make something clear: I have patients young and old who are living their lives with late-stage cancer, and they have been doing this for years! This is not a doom and gloom article—it is real. People with progressive relapsing cancer can live for years, and they can live a good life thanks to the medical advancements; but the reality is, they will never be done with treatment.

Last week during treatment, my physician and I spoke with a patient about her thoughts on the ringing of the bell. The patient stated, “I don’t like that bell; I have never got to ring it, and I never will.” We educated the patient about the controversy, or the controversy related to the bell. The patient stated, “Hearing the bell ring is a reminder that I will never be able to ring that bell!”

Redefining the Bell

A couple of days after that conversation, I was working with a young couple, and the husband’s cancer had progressed through many lines of chemotherapy. It was time to transition him to comfort care—hospice care. After having a very intimate conversation with them about life being taken by cancer, and what “time” looks like, the patient—Mike Smith, a patient and a dear friend—stated, “I want to ring that bell.”

In all my years in oncology, I have never had a patient whom I had placed on hospice ring the bell. But Mike picked up that black handle and nailed the bell, said a few choice words, and sat back down and wept. Family and staff hugged, cried, and clapped as the sounds of the gong bellowed throughout the halls of our cancer center.

As I said, this topic is very controversial, and this article is very real; some of it is painfully real. My message is—let’s change the bell to be rung at the end of each cycle of chemotherapy, at the end of every third cycle, or at the end of palliative radiation to signal a new spot in that patient with late-stage cancer.

Let the oncologist and the patient decide when they want to ring the bell. Let’s take the label off the bell. Cancer survivors can be defined as being cancer- free, but to those people with cancer that won’t go away, they are surviving life simultaneously with cancer.

Key Points

  • Ringing the bell usually signifies the completion of radiation and/or chemotherapy for a patient with cancer
  • Since the 1960s, nurses have become a more integral part of the cancer care team
  • Some patients who may not reach the completion of radiation may want to "ring the bell" as well, making it a hot topic for debate within the nursing world
  • Ringing the bell shouldn't only be reserved for patients who reach the end of their treatment; we should redefine the ringing of the bell to be more inclusive to all patients

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