Dealing with Uncertainty Although patients thought positively about the transition from intensive treatment to scheduled follow-up, some felt as if suddenly they had no one supporting or caring for them. They felt insecure about no longer being monitored, just left on their own to manage treatment side effects and emerging late effects. These patients wondered how long it would take them to return to normal.
Changed Relationships Most of the patients felt lucky to have achieved remission. They felt that their relationships with their partners were now stronger for having gone through the disease process together. However, some relationships were lost when family and friends were uncomfortable and confused about dealing with a cancer diagnosis. On the plus side, patients developed new companionships with fellow patients.
Occupational Engagement For many patients, getting back to normal usually meant going back to work. Although they felt the workplace was a source of emotional support and wanted to return to work, some survivors expressed concern about their ability to do so.
Extended Recovery Time Most of the survivors described lingering effects of their treatment: fatigue, weight gain, and recurrent infections. Some of these effects persisted for months or years, and really hampered survivors’ efforts to get back to normal. Many participants were concerned that what they were feeling were symptoms of recurrence.
Concerns for the Future
The lymphoma survivors continued their follow-up visits with their oncology nurse specialists, which helped them cope with life after the transition. But many reported their fear of recurrence became more intense as they neared each scheduled check-up visit.
A Need for Navigation
Nurse positions in Ireland include clinical nurse specialists (CNSs) and advanced nurse practitioners (ANPs) in hematology/oncology, but they do not have an equivalent to a nurse navigator. Ms Hackett agreed that theirs is an ideal situation for a nurse navigator. “A guidance/sign-posting role is certainly needed to help the patient navigate end of treatment,” she said. “That person would be ideally placed to have a dedicated end-of-treatment clinic visit with each patient to confirm the completion of active treatment; discuss the treatment summary and follow-up plan; provide support; act as a point of contact; and facilitate referrals to support services such as psychology, social work, clinical nutrition, physiotherapy, and the cancer recovery program.”
1. Hackett F, Dowling M. Lymphoma survivors’ experiences at the end of treatment [published online September 4, 2018]. J Clin Nurs.doi: 10.1111/jocn.14658
2. Key statistics for non-Hodgkin lymphoma. American Cancer Society website. https://www.cancer.org/cancer/non-hodgkin-lymphoma/about/key-statistics.html Last revised August 1, 2018. Accessed October 10, 2018.
3. Key statistics for Hodgkin lymphoma. American Cancer Society website. https://www.cancer.org/cancer/hodgkin-lymphoma/about/key-statistics.html Last revised May 1, 2018. Accessed October 10, 2018.