Anne Katz, PhD, RN, FAAN

Apr 02, 2019

The patient was well over 6 feet tall and looked like he had recently lost weight. When he took off his winter coat and hung it over the back of the chair, I could see his scapulae like wings under his sweater. He folded himself into the chair and carefully crossed his legs. He sighed softly as he arranged his arms across his chest and looked up at me.

“How can I help you?” I asked. This is my usual opening statement, even when I think I know the reason for the appointment. Most of my patients are referred to me by oncologists or the nurses who work with them, and before seeing the patient, I review the notes in the EHR. But it’s important for me to hear from the patient why they think they are seeing me. And I do want to help them in any way I can.

The man’s eyes told me part of his story. He looked tired, beat up, and hovering on the point of hopeless. He was at the tail end of a brutal regimen for his colorectal cancer comprising anterior resection followed by weeks of radiation therapy and concurrent chemotherapy. He’d had all the expected side effects and was tired of all of it. So why was he seeing a sexuality counselor?

As I waited for him to talk, the thought crossed my mind that perhaps the referral had been made some weeks before when perhaps he could contemplate the loss of sexual function that results from his treatment regimen. His next words confirmed my suspicion.

“I told the nurse at my last visit that things weren’t going so well in the sex department,” he said, his voice scratchy and soft. “Is there anything I can do about that? I mean, not that I have the energy or anything but it’s just that I want so bad to be able to do something, anything that I used to do before this damn cancer…”

His voice had risen and become a little angry.

I nodded and allowed him to continue.

“Just look at me!” he almost shouted, his face now energized. “I am half—no, a quarter of the man I used to be! I’ve lost close to 50 lbs, I can’t do any of the things I used to do, I have no energy, no appetite, and I am just so… DIMINISHED!”

That word, diminished, carried so much weight. It captured the feelings and experiences of so many people who have been treated for cancer. Their words flooded my brain in the silence that followed his outburst. In it I recalled the frustrations of women and men who could not parent their children the way they wanted and needed to, who could not walk their kids to school or comfort them in their arms when they cried. In that one word I felt the desperation of the young women who could not afford the money or the time to freeze eggs or embryos, and whose dreams of a family of their own had been taken away with the diagnosis. That word described the fears of men no longer able to function sexually who could not see a way forward without the pleasures they had enjoyed.

I talked with the patient for another 50 minutes. I made some practical suggestions but mostly I listened to him talk because that is what he most needed. In other areas of his life he had to act like his usual self. He had an elderly mother who was heartbroken that her beloved youngest son was ill and tried, within her own limitations, to help him, so he did his best to not burden her any further. He was divorced; his adult children no longer lived close by and they had their own lives and challenges to contend with. His friends had stopped visiting, for the most part, and their energy for providing support had waned after he recovered from the surgery and they too had their own issues to deal with. He had limited time with the nurse he saw every month before his visit with the oncologist, and besides, he didn’t want to complain to her because she was so busy and he didn’t want to waste her time.

He looked embarrassed as he said that. He in no way wanted to imply that I was not busy and that I had time to waste. I laughed and told him that I was here for just that reason—to give patients time to talk, to lighten their emotional load, to help where I can. I do have the time just to listen and, in that listening, to learn more about what my patients are going through.

With time, I hope that his feeling of being diminished, like his body, will heal. That he will regain strength and appetite and begin to see himself as who he used to be, and perhaps even stronger. The word he used—diminished—has informed the care I provide to other patients now. I remind them that they will overcome the loss of sense of self and agency that is so much a part of the cancer experience.


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Mark Notess

May, 13 2019 12:10 AM

I remind them that they will overcome the loss of sense of self and agency that is so much a part of the cancer experience.

I wonder if this isn't overstated. I am a shadow of my former self. I don't expect to recover my former sense of self and agency. Instead, I have to craft a new sense of self--a new identity--and a new realm and set of tools for agency. And they are indeed diminishments of my former self. But they are my new normal. I can either keep trying to be who I used to be before cancer treatments flattened me, or I can accept my diminishment and live the best life I can as a shadow of my former self. That's my choice. The sense of loss remains palpable, even as I adapt to my new normal.

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