Does your oncology practice include a survivorship program? How do you prepare your patients for the end of their cancer treatment?
Have you ever taken care of a patient who had a seizure? Before I worked in oncology, I worked in a pre-op area. One day I was prepping a teenaged girl for a routine surgery. She was anxious, but appropriately so. I was about to start her IV when she said, “I feel funny.” I responded, “It’s scary to have surgery, it’s not unusual to be nervous.” I was trying for a soothing effect as I felt certain she was more nervous than anything. But when I tightened the tourniquet on her arm she grabbed my wrist and squeezed, “No, I mean I really feel strange.” Then, with little warning, she had a grand mal seizure.
Of course, her surgery was cancelled while they tried to figure out what was going on with her. I can picture her lying on the gurney, as pale as the sheets beneath her. And quiet. That was my first exposure to a patient in the postictal phase of a seizure. In truth, the quiet after her seizure was more frightening to me than the seizure itself.
What happens to our cancer patients after treatment? Cancer and seizure disorders are different medical conditions, but the postictal phase can serve as a metaphor for the period of time after cancer treatment is completed. Like a grand mal seizure, the treatment phase of oncology care is a whirl of activity. A lot happens, sometimes in a long sequence of events (symptoms, tests, diagnosis, surgery, the start of chemo) or parts of cancer treatment happen simultaneously (surgery is planned while some test results are pending). There are appointments and treatment regimens to follow. A calendar maps out the patient’s life for the following months or even years. But when treatment is complete, the patient enters a new phase, a surprisingly inactive phase. The predictability of appointments and check-ups with the doctor are now spread out with a chasm of time in between. Often the patient does not know how to fill that chasm. Regardless of the prognosis, once treatment is completed, patients do not go back to where they were before. Their old life is gone. They enter a new phase of cancer care, while the worrying and wondering aspect continues, it is not filled with doing.
Sometimes the trauma of cancer treatment feels more acute once it is completed. This often catches patients and families by surprise. When Susan completed her surgery, followed by chemo and radiation for stage II B breast cancer, she and her husband were elated. But on a follow-up visit a month later, she burst into tears. “I don’t know how to be me anymore.” As we continued talking she told me that friends and family thought her cancer was behind her and that she should “get on with her life.” Even her husband was struggling to understand why Susan was still so upset. He had gone through his own process, which cannot be dismissed, but he felt it was better to just move on and wanted her to do the same.
Mary had a similar experience. Her prognosis was not as positive as Susan’s, yet after her treatment she expressed some of the exact concerns that Susan had. Mary had lung cancer and had finished her radiation therapy, and now was taking an oral chemotherapy drug. On a follow-up visit with her radiation oncologist, she said that while the treatment regimen of XRT had initially seemed daunting, daily treatments for 5 weeks, the predictability of it grounded her. She was having a difficult time adjusting to the passive phase of her cancer. She was relatively symptom free. “I should be happy, right?” Mary had a clear understanding that her cancer was not curable but it was hard getting her family to understand. Surely if she had finished her treatment it meant she would get better, and if it didn’t, then why had she stopped? Her family was invested in her demonstrating a valiant fight against cancer and so the quiet of waiting and watching was difficult for them to bear.