My first run in with cancer came when I was 13. Cathy, a new friend and fellow junior counselor at the summer camp where I worked, with bone white skin, a dance of freckles across her nose and a gloss of golden brown hair down her back, was diagnosed with leukemia. We never knew what to say as we watched her waste away that summer, the dark circles under her eyes beneath growing from week to week. Treatment failed her, and she died that fall, never regaining her effervescence or her musical laugh. She could barely manage a thin smile to let us know that she appreciated our visits, and then even that became too hard. I cried for her, was horrified at the fragility of life, and then quickly forgot in the rush to grow up, start high school, have a boyfriend and reclaim my teenage innocence.
Many years later when my best friend, Amy, was diagnosed with lung cancer, my emotions were far more complex. Shock and horror at the diagnosis. Anger that her doctor hadn’t taken her persistent cough more seriously. Fear and sadness as we watched her cancer progress. Tremendous loss and grief when she died. So many different emotions came rushing at me at various times. How could Amy have cancer? How could there not be a cure so that she could live with all the love she fostered? She had introduced me to my husband and given me so much of my life, how could she not be there to share it? I am still processing the grief of losing her and am grateful every year about this time when Amy’s friends and family get together to remember her, sharing stories that bring her love back to life.
My Own Bad News
Nine months had passed between Amy’s death and the day I heard the words, “You’ve got cancer,” but the heartache was still fresh. And my fear was that much greater without Amy there at my side. She would have known just what to say, how to listen and validate my fears while providing comfort and reassurance. My family rallied and I was never without the love and support I needed, but I missed Amy’s guidance. She had been my friend and mentor at the office, in marriage, raising kids. Why was she not here to mentor me through cancer?
Since my own recovery, I’ve supported several friends and neighbors through cancer—their own and that of those they love. And as a peer mentor in two different hospital programs, I’ve now helped many patients get through their ordeals. Throughout, I’ve seen the many ways that people cope with cancer, how they feel, how they express those feelings, what they hide and what they share. But I don’t always know what to say.
While I can bring empathy and compassion to the conversation, I haven’t experienced that special fear of learning your cancer has metastasized or recurred. What do you say to someone who has just heard that the cancer is back? How do you console someone who has learned there is no cure, that her future is limited? Is there anything one can do to help someone who denies the inevitable?
Listening to Learn
My urge to fix things, solve problems, offer advice and take charge can be hard to suppress, but it turns out, one of the best things to say is nothing. So many times, what a friend or patient I am mentoring really wants is someone to listen. I have learned to sit quietly, hold her hand and let her talk. And then, after truly hearing, to offer empathy rather than advice. “I’m here for you.” “I am so sorry you are going through this.” “It takes so much strength to deal with what you are going through.”
Often, patients don’t want to complain about all their physical ailments from cancer and its treatment, and they may have many more fears and scary emotions than they are willing to share. When Nina was struggling with side effects of a clinical trial medication, I was tempted to jump in and tell her to call her doctor right away to switch to a different medication. But what she needed was a reminder to advocate for herself and get the attention of her medical team. So I bit my tongue and said, “I’m sorry you are so uncomfortable. It must be a challenge every day. Does your medical team know how much you are suffering?”
When Gloriana* learned the treatment she was on wasn’t working against the ovarian cancer that had returned a third time, she was scared. An avid gardener, she expressed those concerns as worry about her plants. I knew that wasn’t really her biggest worry but helped her find homes for some of her more portable plants and looked for ways to draw her out. “You are such a loving gardener. It must be hard to give them up. Can I help with anything else you are worried about?”
Talking about death and dying is such a taboo in our society that I don’t have much practice with the very difficult conversations we all face. My mother, still in charge at age 95, has quite literally planned her own funeral, and yet, we tiptoe around the obvious topic of her death, her fear of dying alone, her faith and her emotional needs at this time in her life.
So, it’s no surprise that I struggled when it came time to support Val* after she decided to stop treatment. Her family wanted her to continue, and she needed to talk through how to tell them that it would be her decision, not theirs. I had watched her deteriorate for nearly a year, slowly losing weight, strength, and mobility, but always accompanied by her daughter who offered so much love. I fumbled for something to say that wouldn’t sound like a platitude. “I can only imagine how difficult that conversation will be. How can I help?” She shook her head and squeezed my hand. “This one I have to do on my own,” she said.
An Open Heart and a Closed Mouth
Perhaps the hardest conversation I’ve had was with Stephanie* who hadn’t yet come to terms with her impending death. She was making plans for when the treatment finally kicked in, despite it being clear to those around her that it never would. A wise palliative care doctor had once suggested language to use in such a conversation, “I have all these hopes for you too. But I worry what happens if the treatment continues to fail?” Was it my place to say this? Perhaps her denial was giving her strength and allowing her to process reality on her own timeline? I held her hand and nodded in enthusiasm as she shared her travel plans. I would let someone else say this, and hoped she had a loving friend who would know when it was the right time.
I still have a lot to learn about supporting patients through cancer. The diversity of physical and emotional experiences, variety of coping styles and individual needs of the people we love means there can be no one-size-fits-all approach. And what seems to make sense at one point in time, can be so clearly wrong when I think about it later. But when I fumble for words, the banal clichés come rushing out. “You’re so brave,” and “Of course you will get through this,” and “Everything will be fine,” and “Let’s not worry until there is something to worry about” are not helpful, sometimes even hurtful.
I try to check myself. I take a few deep breaths. I open my heart and listen. But I don’t always get it right. As hard as it was being the patient, I continue to find it challenging to be the patient supporter, the mentor, the friend, the loving caregiver. If only Amy was here to guide me…
*Names changed to protect patient privacy