Oncology nurses and cancer patients share the stories of their connections.

By Diana Price

Theresa Back was 26 years old in October 2007 when she was diagnosed with Stage IIA infiltrating ductal carcinoma, a form of breast cancer. Her treatment plan has included a lumpectomy, a sentinel lymph node biopsy, and chemotherapy and Herceptin® (trastuzumab) infusions - and will continue with tamoxifen (Nolvadex®) for the next five years.

Throughout her difficult treatment, the Vancouver, Washington, resident says that there has been a consistent bright spot amid the many challenges of her journey: “My nurse, Jessica, has been very important to me.

“Jessica knows that I need a Jolly Rancher to suck on before she flushes my port because I gag on the taste of the medicine,” Theresa says. “She knows where my port is and knows that I need a longer needle; she also knows my past side-effect issues. She knows when the doc forgets to ask for a liver enzyme test and knows to ask me about how my bowels are doing; she literally knows me inside and out.”

Most important, Theresa says, is the sense that Jessica takes the time to relate to her and to understand her concerns. “Jessica is near my age. Having someone who understands my struggles as a young cancer patient is very helpful. Without explanation, she knows how I struggle with dating, family, work, and juggling a cancer diagnosis. She is encouraging, compassionate, strong, and supportive.”

Importance of Relationship

Brenda Nevidjon, MS, RN, FAAN, president of the Oncology Nursing Society (ONS), says that relationships like the one between Theresa and Jessica are one of the hallmarks of oncology nursing. “As oncology nurses, we are privileged to assist and support people facing huge physical and emotional challenges through their journey with cancer.

Because we have longer contact with our patients than many other nursing specialties do, we develop a depth of relationship that is quite special.” The value of these relationships, Brenda says, has long been noted as essential: “Virginia Henderson, an early nurse theorist, noted that central to helping patients is empathetic understanding grounded in a genuine interest in the patient and family.”

And, she says, it’s this desire to truly get to know each patient and create a productive, meaningful relationship that draws many nurses to the field, creating an inspiring and committed population who are also aware, Brenda says, of the benefits they reap. Oncology nurses “will tell you that the rewards from those relationships exceed expectations.”

This has certainly been the case for Liz Johnson, a clinical nurse specialist currently caring for women with acute gynecologic malignancies at Massachusetts General Hospital in Boston. “It’s a profound privilege to accompany patients with cancer through the treatment process,” Liz says.

“The patients really understand what’s important and how to prioritize. And, in my experience, they are so open to inviting nurses and other providers into their lives, sharing their deepest thoughts and concerns.” The opportunity for relationship that exists as a result, she says, has made her work with oncology patients transformative:

“Oncology care is intensely personal and can be exhausting, but it’s also full of meaning, opportunities to grow and to make significant human connections.”

Ultimately, it is these valuable relationships that allow nurses and patients to feel that they are giving and receiving the best possible care. “My very first goal is to relieve suffering in what can be a very stressful situation,” Liz says, “and a close second is to help patients find meaning in their cancer experience. Relationship is the key to realizing these goals.”

Recognizing the Individual

Feeling as though your provider is not truly listening to you or understanding your perspective can be profoundly demoralizing for many patients undergoing treatment. Debra Bufton actually switched oncologists twice during her treatment for breast cancer, largely as a result of the nursing staff in both offices.

“In the first case,” Debra says, “the infusion nurses were very patronizing,” an attitude that led her to feel as though her concerns were not being heard. “I was an active researcher during my care, and whenever I brought something up, I always felt as though I was being treated with a pat-on-the-hand response.”

In describing the positive experiences that she has had at another of her providers’ offices, the difference is obvious: “Every time I’m there, people remember me, they ask about my kids, they listen when I respond - and it’s not an act; they are truly interested.”

Liz Johnson knows that recognizing her patients as individuals and listening to their needs is critical:

“The most important thing, I think, is to approach patients as adults - as real people first and patients second - and then to validate with genuineness the importance of their thoughts, perceptions, and input by carefully listening to them and working with them not on them.”

And it’s clear that patients respond to this approach. Feeling that her nurse had a genuine interest in her life and in the success of her treatment went a long way toward helping Janet Gaston through her recent treatment for breast cancer.

In describing the way she connected with her regular infusion nurse, Mara, Janet says, “She listened to me in a calm and caring manner. She treated me like what I had to say was very valuable.” It helped, Janet says, that Mara was good at accessing her port and got treatment under way easily each time, but it was the emotional connection that saw her through some of her darkest days.

“Mara and I had a lot in common. She laughed with me as we shared funny stories about our sons - three of whom were around the same age - and she came and visited me in the hospital the day after I had my surgery and brought me a funny little snowman. Her visit was very encouraging to me, and I appreciated it.”

The importance of recognizing patients’ needs and concerns, of listening to their stories and acknowledging their fears, is heightened during cancer treatment, survivor Jeanne Giles Hackney agrees:

“Top-notch oncology nurses really do stand out. Their above-and-beyond caring matters so much to us as patients.”

During the endless tests and hospital visits and impersonal phone calls, Jeanne says, when your body had been poked and prodded by countless people who don’t always seem to care, it’s easy to feel dehumanized. When you encounter a nurse who makes it a priority to get to know you and to acknowledge your concerns, it makes a big difference. The value of these nurses, she says, is that “they are somehow able to honor [your] individuality.”

In Sickness and in Health

The sense of feeling honored at a time in your life when you might be at your lowest physically and emotionally is powerful medicine for many patients. Jennifer Steen, a young breast cancer survivor from Portland, Oregon, who is herself a nurse, credits her infusion nurse, CJ, with offering unconditional support that helped her bear the worst of her ordeal:

“To be able to share so much personally, to be loved bald, sick, and in pain, and accepted no matter what state of mind I may have been in - that was a gift.”

Also a gift, Jennifer says, was the opportunity to speak about all the issues and ask all the questions with someone who was compassionate and knowledgeable:

“There was no avoidance of the hard questions, no fake attitude about what the disease could do to me, no ‘Let’s look at the bright side’ comments. It was a real relationship - honest, trustworthy. It was a friendship.”

For Jennifer the relationship was crucial:

“CJ was the difference for me in standing or falling; she helped me stand.”

Brenda Nevidjon of ONS says that stories like Jennifer’s that illustrate the profound impact that one caregiver can have speak to the power and the depth of the relationships that often develop between oncology nurses and their patients:

“Patients and families describe so clearly how ‘their nurse’ made a difference for them,” she says.

And it’s clear, in hearing from both nurses and patients, that the interaction and the relationships possible in an oncology setting can be mutually life changing - as well as lifesaving.

Liz Johnson confirms that it is this idea of transformative exchanges that keeps her inspired as an oncology nurse:

“I am reminded,” she says, “of a concept from Hildegard Peplau, a leader in psychiatric nursing in the 1950s, who advanced the notion that the process of providing excellent nursing care not only changes the patient [but] changes the nurse such that both grow from the experience.”

In Liz’s case, each patient represents an opportunity for growth; for patients - like those who have shared their stories here - who meet nurses with the passion and the commitment that mark an exceptional oncology nurse, their willingness to connect can also present an opportunity to find meaning during a difficult time.

When Mary Friedman was diagnosed with ductal carcinoma in situ at age 44, she had been working as an oncology nurse for 20-plus years. But neither her years of experience nor the fact that she was surrounded by information about her diagnosis was always helpful, she says.

“I found being in this situation was both a blessing and a curse. I had great resources available at work: I could get ‘curbside’ opinions from the doctors with whom I worked; I did hours of research during my lunch hour; however, sometimes the information was overwhelming, and I would have to pull back and let it go for a while.”

In addition, because she was constantly interacting with patients who had similar diagnoses, Mary says, she had to work hard not to compare her situation with theirs. The constant questioning that these encounters produced within her mind about the decisions she was making, the information she was receiving, and the potential outcome of her own situation sent her on what she referred to as the “cancer-go-round” - a ride that she says she had a hard time exiting.

Also overwhelming, Mary says, was the sense of guilt that arose when she found herself confronting her fears about her own diagnosis in the face of the sometimes more dire conditions of the patients for whom she was caring.

“I felt that I didn’t have the right to be angry or sad when all around me were women dying of this disease. I knew my diagnosis and prognosis could have been so much worse. I was one of the ‘lucky’ ones - although I didn’t feel lucky!”

And well-intended comments like “Don’t worry - you’re going to be fine” were also frustrating. “I wanted to say to them, ‘Yes, physically I will be fine,’” Mary says, “‘but don’t dismiss the strong emotional toll this whole experience is extracting from me.’”

Throughout her experience Mary was reminded that, as an oncology nurse, she had been trained that pain is what the patient says it is, not what you think; now, as a patient herself, she realized that the emotional trauma experienced by a person receiving a cancer diagnosis is similarly personal - nobody else can judge its intensity.

Relief and guidance on her journey came through work with a healing coach, who helped her sort through her emotions.

“Working with her allowed me to express what I was really feeling,” Mary says, “so I could go to work and function as a nurse and not let my role as a cancer patient interfere with that.”

Now she acknowledges that she has a different perspective when she cares for her patients. “While I don’t feel it’s necessary to be diagnosed with cancer in order to be a good cancer nurse, I am now able to put myself in their shoes. Whether it’s working with someone who has just received her diagnosis or giving someone pre-op information, I’m much more able to understand what she is going through.”

source site: click here