An oncology nurse learns what it’s like to have cancer — and uses the experience to improve the way patients are treated.
“TERROR. ABSOLUTE TERROR.”
That’s the phrase Oncology Nursing Society (ONS) member Patricia Jakel, RN, M.N., AOCN, uses to describe her breast cancer diagnosis in the winter of 2016. Jakel, a clinical nurse specialist at UCLA, discovered a lump in her breast on that year’s Super Bowl Sunday and knew she had to have it examined.
“I first found it by looking in the mirror, which, at 55, is not something I do very often,” Jakel jokes. “It was only five months after a negative mammogram. Because of some insurance complications at the time, I could get an MRI (magnetic resonance imaging test) only if a surgeon ordered it. So I had to have a surgeon friend of mine examine me in my office to make sure. After he saw me, he ordered the MRI.”
By chance, the MRI results came back to Jakel during an appointment with her gastroenterologist. She was there for a routine colonoscopy when the doctor mentioned that the MRI results were in. Both being part of the medical community, Jakel and her doctor decided to just read the results together.
“I’d had this appointment for months,” Jakel remembers, “and I’d told my doctor about the lump. She said she’d gone through a similar situation with a scare, and everything had worked out fine.” But that wasn’t the case this time. Jakel recalls watching her doctor’s face change after seeing the results.
“She’s one of those doctors who always has the computer turned to face you while she’s talking. I saw this horrified look on her face,” Jakel remembers. “She said, ‘I’m so sorry to be the one to tell you, but you have cancer.’”
The office started spinning. Jakel remembers being in a daze as she left. By the time she’d made it to the elevator, she was in tears. An older woman said, “Honey, don’t worry. It’s going to get better.” Jakel was stunned. Was she now the one being comforted? She’d woken up that morning on one side of the cancer experience and now found herself on the other.
After beginning treatment, Jakel continued to work. She elected not to disclose her diagnosis to her patients, and her colleagues and hospital administrators worked hard to fulfill her wishes.
She started working with a new patient, Nicole, who’d received a diagnosis of lymphoma around the same time Jakel had learned about her breast cancer. Nicole lived more than 100 miles from the hospital, was a young mother with two kids at home and found herself alone a lot. Jakel visited Nicole often during downtime and between patients.
“I used to go sit with her when I had time,” Jakel remembers. “She had bad mucositis, so I’d bring her Slurpees from 7-Eleven, and we really got to know each other. One day, we started talking about her diagnosis, and she told me, ‘It isn’t fear. It isn’t anxiety. It’s all-out terror.’ I hadn’t told her about me, but we’d have these deep conversations about fear and terror. That’s how we bonded.”
It was from those conversations that Jakel’s perspective changed. She learned about unsupportive social interactions and how often they occur after a cancer diagnosis. Jakel noted many well-meaning comments from her own friends, family and co-workers that missed the mark. She suddenly understood the gap in understanding that can exist between patients and oncology professionals.
“I thought of all the stupid things I’d said to patients over the years,” Jakel says. “Stuff like, ‘Oh, come on, you got this! You’re going to be a fighter.’ In fact, I’d had instances in the past where certain patients would blow up at me over saying things like that, and I never really got it — until now.”
“I’ve learned not to gloss over things,” she adds. “Not to just tell a patient, ‘Honey, don’t worry. Everything’s going to get better.’ It’s about listening, reacting and addressing individual needs in a supportive way that’s right for them.”
Since her diagnosis, Jakel has worked to improve the care she and her colleagues provide, specifically when it comes to social interactions.
As part of the ONS Foundation’s Mara Mogensen Flaherty Memorial Lectureship series, Jakel was given the opportunity to share her story, and dual perspectives, at the 2017 ONS Congress in Denver, a national conference for oncology nurses.
Jakel, now in remission, discussed her experiences and touched on unsupportive social interactions between patients and nurses. She explained ways to close the gaps in understanding and encouraged her colleagues to pursue further research in the area. She wants patients to feel supported and understood from initial diagnosis through treatment and into survivorship.
It was through donations and support from the ONS Foundation that Jakel was able to share her story. The lectureship is possible through contributions to the ONS Foundation, and it provided Jakel with the platform to educate her colleagues. For more information about the ONS Foundation, visit ONSFoundation.org.The ONS Foundation is the only entity in the world that directly supports the projects of oncology nurses like Patricia Jakel. For more information about the ONS Foundation and ways to give, visit onsfoundation.org.