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?