Julie prided herself on her hopefulness. When she finished her chemo and radiation several months earlier, she was told she was cancer free and promptly gave herself a celebratory party. Then she started having back pain. At first she thought she had thrown her back out, but when the pain persisted, she mentioned it to her medical oncologist. Scans showed bone mets in several places.
She arrived for her consult in rad/onc wearing a yellow and orange hippie-dippie skirt that floated out behind her and a smile as bright as the colors in her skirt. “I’m back,” she chirped.
When Julie met with the radiation oncologist, she said, “I want you to know I’m not in denial. I know how bad my cancer is but I prefer to focus on the positive.” She told us she knew it was bad news before she had the scans. “It’s like I can feel the cancer growing.” Even so she cried when the radiation oncologist told her the results and that she needed more radiation. A few minutes later she composed herself, “Okay, it is what it is. Let’s get this party started!”
Julie hinted at a dark past. She was divorced with no children. When we asked about family, she paused before saying, “No one I stay in touch with.” Her friend Mimi brought her to her appointments, but we were never clear if they were partners or close friends. The relationship didn’t matter, but the secrecy did not jive with Julie’s otherwise open personality. Our team worked with her to manage the pain. She was one of the most compliant patients I have ever worked with. “I will do whatever you say,” she said. It was not that she went blindly forward, she needed explanations and rationale, but once things were explained, she followed our recommendations to a T. And she did so with a smile.
Her pain issues were complex: she had back pain, bone pain in her hips, and neuropathy in her feet and hands from previous rounds of chemo, and she was highly anxious. Her smiling calm exterior may have been a façade, but it was one she was comfortable maintaining. Because of her cluster of symptoms, a member of our team checked on her almost every day. As I reviewed her symptoms after her second treatment, Julie blurted out, “My father was a bastard. I didn’t even go to his funeral.” Her comment came out of left field, so it took a moment before I managed to respond. “I’m sorry to hear that,” I said.
Julie smiled but said no more, not until I next saw her. “It was just me and my brother growing up,” she said. “With everything that went on with my jerk of a father you’d think we would be close, but it was just the opposite. I haven’t talked to him in years.”
I was used to how open she was about all things related to her cancer, but these conversations were different. I knew what to say when it came to symptoms and was comfortable with her talking about end of life concerns. But the comments about her family and her past were awkward; they hinted at abuse and left me uncertain of what to say. I nodded encouragingly but that was the end of her revelation for the day.
I knew she wanted something from me but I wasn’t sure what. I asked our social worker for recommendations for the next time Julie divulged something new. She suggested I have a planned response, something like, “You seem to be thinking a lot about the past,” and then to follow Julie’s lead.
In the ELNEC (End of Life Nursing Education Consortium) class I took, we practiced mock scenarios and learned strategies for encouraging dialogue. We learned how to respond to family conflict, but most of the focus was on immediate conflict issues not about how to deal with a family history of conflict.
Julie’s pain had lessened after several weeks of radiation, but she was getting progressively weaker. Fatigue consumed her and her normally bright affect was dimmed. Mimi accompanied her on most of her visits, but Julie preferred to have her stay in the waiting room.
One day she said to me, “My brother wants to see me before I die.” I said, “How do you feel about that?” She looked up and away, as if she were looking at something in the distance. She replied, “The thing is he doesn’t approve of my relationship with Mimi,” and then she shrugged as she added, “Mimi thinks it’s a bad idea.” Julie looked at me then, expectantly. Maybe because I had answers to her physical symptoms she thought I would have answers to her other questions too.
I let the silence hang between us for a few moments before I asked, “What do you want to do?” Tears welled in her sunken eyes, “I think I’d like to see him, but I’m not sure.” I sat down next to her and told her exactly what I was thinking. “I honestly don’t know what to say next.” Julie laughed, “That’s honest. That works for me. Every time I try to talk to Mimi about my cancer and dying or about seeing my brother, she changes the subject or tells me she can’t talk about it now.”
We sat for a couple of minutes while Julie collected herself. “So, it was like this …” Once she started in, she didn’t stop.
I listened as she told me about her father and brother and as she told me all the things she had hinted at: Mimi was her partner, her father had been abusive, she was estranged from her brother because he did not approve of her lifestyle. Julie called her brother a holy roller with little tolerance for her lesbian lifestyle.
“I’d like to see him but I don’t have the strength to deal with him if he is just going to try to save me.” From what she told me it sounded like a distinct possibility. I understood why Mimi was reluctant to have Julie exposed to that.
I was trying to come up with a wise response when Julie added, “I call this the Happy Crappy. Everything in my life has gone to crap. I’m dying. And then this one thing I have wanted for a long time, to see my brother, becomes a possibility.”
Once again I was at a loss for what to say. It wasn’t that I didn’t have ideas; it was that I was afraid of saying the wrong thing at a time when Julie needed only the right things to be said.
All of us have stories of someone saying the worst possible thing at the wrong time. This was a delicate situation, and I wanted to get it right. I thought about what the social worker had recommended: “Follow her lead.”
And so I said, “Yeah, it sounds like Happy Crappy to me.” Julie laughed then and surprised me with her next comment, “You always say the right thing.”
I wanted to say, “Are you crazy?”
While I was miserably trying to sort through what to say next, I had somehow managed to say the right thing.
When I think of communication, I think of two people talking together, but in this case, most of my communication was conducted in silence. I was glad she thought I had gotten it right. I didn’t tell her that the whole time she was talking I was straining to think of what to say, that some of my lapses in conversation were more because I was thinking about what to say than about being strategic.
In the midst of a difficult situation something good emerged. Maybe that was my Happy Crappy moment. I had followed Julie’s lead, and it took me to where she needed to be, not to where I thought she should be or to where I needed to be.
In the end, that was the happy part for both of us.ONA
Ann Brady is the symptom management care coordinator at the Cancer Center, Huntington Hospital, Pasadena, California.
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