When an oncology nurse becomes a patient with cancer, the experience can shed light on the cancer journey and help other nurses comprehend what their patients go through. During a session at the 42nd Annual Congress in Denver, CO, as part of the annual Mara Mogensen Flaherty Memorial Lectureship, Patricia Jakel, RN, MN, AOCN®, an advanced practice nurse at UCLA Santa Monica Medical Center and an associate professor in the UCLA School of Nursing, shared her journey, describing the terror that comes with diagnosis, the frequent unsupportive social interactions, and the symptom burden.
She said she wanted to help nursing colleagues “learn what it is like on the other side of the hospital gown.” Along the way, Jakel wove in humor, strategies to help patients endure their suffering, and shared a video interview with a special patient, Nicole, who also described the fear and challenges of a cancer diagnosis.
Jakel discovered a lump in her breast on Super Bowl Sunday 2016. She experienced anxiety and fear in the coming weeks as she sought and waited for a diagnosis. “The wait started. That’s the hardest part,” she said. “It’s more than fear. It’s intense fear. It’s terror.”
When the diagnosis came, it was stage III invasive lobular breast cancer, a large tumor that required mastectomy and 36 sessions of radiation. “I thought, ‘Why me?’” she said. “But why not me? I don’t know why I thought I was above it.”
Jakel framed her experience within a praxis theory of suffering, which maintains the existance of two major behavioral states: enduring, when emotions are suppressed, and emotional suffering, when emotions are released in an overt state of distress. According to the theory, individuals move back and forth between the two states according to their own needs, their recognition and acceptance of events, the context, and the needs and responses of others.
Jakel agreed that she practiced behaviors of enduring mixed with suffering to preserve herself, and she encouraged nurse attendees and all caregivers to maintain a respectful distance from those who are enduring. She suggested using silent compassion, as well as refraining from touching or making empathic and sympathetic statements. “Sometimes empathy is not the answer,” she said. “You can’t always be empathic. We have to put up that wall. If you interrupt our enduring, we suffer more.”
Throughout her journey, Jakel experienced a lot of unsupportive social interactions, as did her patient Nicole. Both described family, friends, coworkers, and even healthcare professionals bumbling, being intrusive, offering advice, using a sad tone, smothering, oversharing other cancer journeys, reacting with intense emotion, distancing themselves, minimizing the problem, being too upbeat, blaming, prematurely grieving, and disclosing the diagnosis to others without permission. For example, a healthcare professional told Jakel, “Your MRI looked so bad, we wanted to rush the biopsy.” And a friend said, “You are so lucky that you don’t need chemotherapy.”
Feeling unsupported can make patients experience additional stress, anxiety, depression, and even post-traumatic stress disorder, as well as alienation from their support networks. To enhance coping, Jakel recommended spending time with family, relying on religious beliefs, exercising, seeking information, and maintaining normalcy by working, caring for children, and completing housework and chores.
Nicole recalled calling her friends during her cancer journey, but all they talked about were her disease and treatment. She wanted a break from that to talk about normal things, such as everyday life and their kids, like they used to. “You forget there’s a human being in there,” she said. “It’s all about the cancer.”
Now in remission, Jakel said she grapples with the fear of recurrence, which is harder than the initial diagnosis. Although all survivors experience transient fear of recurrence, 40%–70% of patients find it to be chronic and disabling. Survivors’ psychosocial needs are not being met, so Jakel encouraged the audience to consider research in this area, because no validated tool measures fear of recurrence and very limited data are available in patient populations other than breast cancer.
“My friend sent me this quote: ‘To conquer fear is the beginning of wisdom.’ I’m conquering my fear,” she concluded. “I’m not sure I’m at the wisdom yet. But I’m conquering my fear and trying to quit all those voices inside me. I thank you all for what you do.”
This session was supported by the ONS Foundation.