It’s become a common practice in oncology institutions across North America: A patient completes their prescribed course of treatment and they ring a bell. Usually it’s a large bell, like one that used to be rung in schools signaling the end of recess. Or it’s a ship’s bell, attached to a wall outside the radiation department or the chemotherapy unit. Often patients have their loved ones with them to witness this sentinel event—the ringing of the bell.
I’ve even used the event as the title of one of my books, After You Ring the Bell: 10 Challenges for the Cancer Survivor. In the introduction to the book I explore the concept of cancer survivorship and what life after cancer might look like for the person who rings the bell at the end of treatment. I tried to be gentle in my caution about expectations for the immediate days and weeks that follow. But as the years have gone by since publishing the book and as a result of many conversations with patients who have rung the bell, I have come to question that practice because of what it means to those patients and those who care for them.
In my appointments with men who have completed radiation therapy for prostate cancer, I discuss the long- and late-term effects of their treatment. Some have the symptoms of radiation damage to bladder and/or bowel and want to know when the these will go away. Almost all who have been treated with androgen deprivation therapy ask about when they can expect to no longer have hot flashes. Men who have had surgery as primary treatment for prostate cancer deal with incontinence and erectile dysfunction for weeks, months, and even years with little or no resolution. So what did ringing the bell mean to them?
I recently met with a young woman who had been treated for anal cancer. I asked her about her experience of radiation therapy as she now needs to use dilators to prevent stenosis of the vagina. She told me that she really didn’t want to ring the bell that day. She was feeling at her worst after weeks of radiation, with multiple symptoms affecting every aspect of her life. She was tired, sore, and generally “beat up.” She was also sad and scared. She felt sad about not coming to the cancer center each day and being cared for by the radiation therapists and nurses who had been so kind to her and who she felt were her allies as she went through treatment. She said she would miss them and that some of them now felt like friends that she would not be seeing regularly. She was also scared about leaving the professional care setting, something that is described in the literature as “deprofessionalization.” She had been encouraged by the staff to bring family and friends with her to that last treatment so that they could witness her ringing the bell but she chose to come by herself, despite her considerable physical discomfort, as she did not feel like celebrating that day. “If you want to know the truth,” she continued, “I was actually in tears that day. It was not a happy day and I did not want to ring that darn bell, but I felt I had to for the staff more than for me!”
However, I have also had patients tell me how wonderful they felt when ringing the bell. One woman talked about it as a source of pride that she had stuck through the radiation treatment as if it were a marathon and had made it through the finish line, battered and bruised, but in her mind, she was done. I do hope that this was true for her and that she never needs additional treatment. What will her memory of the bell feel like then?
What message is sent to those who ring the bell? We all know that this soon after treatment is over no one knows if the treatment has been adequate, never mind “curative.” There are still months and years of scans and anxiety for the patient and their loved ones who are fearful that one day the cancer will be back. So is ringing the bell a false sense of… security, hope, faith? Do their loved ones assume that life is back to normal for them all, when in fact long- and late-term effects may impact their life for many more months or even forever? Does this signal to survivors that they have to hide their ongoing challenges from friends and family because it is expected of them after treatment is over?
And what about the patients who have metastatic cancer and will have ongoing treatments, perhaps separated by weeks or months, who hear the bell but don’t ring it—or if they do, it does not have the same significance as those who have had treatment with curative intent. Many patients today have to use adjuvant therapy for many years—is their treatment ever really over? What do these people think when they hear the bell that does not toll for them?
Perhaps it is time to reconsider the ringing of the bell. Sure, it makes many staff members I have talked to feel good that someone in their care has completed treatment. But this should not be about staff but about the patients they care for. Is there not some other way to signify not only the end of treatment, but the end of one stage and the beginning of another? Cancer is a series of transitions from diagnosis to long-term survival or death and it is up to those most affected, our patients and their families, to mark the transitions in ways that feel right to them and provide hope or solace. Often survivors do not feel like celebrating that day, week, or month because they are feeling the full effects of high treatment-related symptom burden and may prefer to delay anything resembling a celebration until they are feeling better.
Perhaps we should consider a range of options to suggest to patients at the end of active treatment so that this important transition is observed in a way that reflects how they are feeling, physically and emotionally, rather than prescribing a one-size-fits-all approach like ringing the bell. Some may like the idea of a ceremony, attended by those important to them who have supported them during active treatment, to put away the file they have created to house their results, appointments, and other notes about active treatment. Material symbols of change may be appropriate—new bed sheets or bath towels, perhaps, gifted to them by friends and supporters who want to mark their happiness at the transition. Perhaps members of the health care team can give the survivor a card or other written messages conveying our feelings at this important time, because we are often well aware of their struggles and efforts to “get through” the treatment, and often miss our regular contact with them.
For those who are reading this blog, what can you think of that may replace the bell ringing?
Cobie Whitten, PhD
May, 08 2019 5:41 PM
I facilitate a cancer support group and was alerted to issues regarding the bell ceremony from group members. Those with metastatic disease who are literally tethered to their chairs in the infusion suite (with no option of exiting when the bell is ablout to ring) describe the bell as a cruel reminder of their own disease status. While they are happy for those lucky enough to ring the bell, their own trauma and distress are increased each time the bell rings. Even those with no evidence of disease who got to ring the bell descibe great ambivalence or downright negativity to the bell - they know all too well that after a cancer diagnosis, uncertainty is the only certainty. And as my patients have said to me: "Even if some folks like ringing the bell, do we need to continue the public practice if ANY of our most vulnerable patients are hurt by it?" Surely there must be a way that we can acknowledge those who successfully finish treatment (although some do not even want any "celebration") without causing pain to those who never will. Again, I am guided by the wisdom of "First do no harm."
Quotes from my patients:" I am two years into a stage 4 liver cancer diagnosis. The bell has caused me pain. I sat in the infusion room next to a woman who was very excited that she would get to ring the bell that day. I told her I was happy for her. She asked when I would ring the bell – I responded “never.” She did not believe me and kept pushing – if only I have a positive attitude, don’t ever “give up,” etc. Finally, one of the infusion nurses who overheard came over and said to the woman, “She will never ring the bell.” This process is painful enough – I do not want to detract from anyone else’s happiness, but I also do not want to have my pain made worse. And I just heard that darn bell again this week – it made me cringe."
"There were fortunately no bells which I received my treatment. I got a huge hug after the last treatment and it was wonderful and just what I needed and what most people need. On my last day of treatment (and who knows - I may be back in that treatment room one day) there were people all around me suffering. They were very sick. If there had been a bell and they had rung it for me - - well, it would have made me emotionally sick. I should not be celebrating when people around me are so sick."
May, 12 2019 9:41 PM
Great article, Anne. I am another of those non-bell-ringers. I have incurable stage four metastatic prostate cancer. I don't resent it when others ring the bell. But the assumption that we're all living the happy-ending cancer narrative galls me, and is a big motivation for what I'm writing about myself. The majority of people with cancer are not living the happy-ending narrative, yet that's the one everyone wants to hear and promote.
Jul, 26 2022 12:39 AM
I had breast cancer and it was caught early. I was having breast MRI's done every 6 months because of precancerous cells found earlier. I did not ring the bell. I had been going to the infusion center for chemo and you get to know people pretty well. I knew there were people in that building that would never be free of this awful disease and I just couldn't ring it. The nurses got a little upset with me for not doing it but I just kept repeating myself, I ring it when we have cures.
Your points for not ringing it were all the reasons I could not. I didn't feel like it was over for me and it's not. It's always a fear, I have to do scans all the time, surgies to have more things removed, meds that made me hurt and even more sick, it's never ending. I feel empowered by your article that I made the right decision. I knew I couldn't be the only one that felt that way.