The other day I was infusing chemo for an attractive middle-aged women wearing a brunette wig, and I knew that like all the other patients I had been giving chemo to, she would be going home to friends and family with questions and expressions of support, some of it indispensable, some of it unwelcome.
After caring for so many cancer patients at work, I’ve noticed that everyone prefers a very different type of emotional support. Some want to be left alone, some want to be showered with attention. But what they don’t want is dismissive expressions like “everything will be ok,” or “It’s all in God’s hands.”
To gain more perspective, I interviewed several women with breast cancer on their experiences and needs for help. I was amazed at how different their stories were.
I think most people I encounter with cancer share my aunt’s feelings about support. She says she always felt more supported when people called, visited or sent cards. As soon as she got diagnosed she told everyone. She had friends she didn’t expect to hear from offer to accompany her to doctor’s appointments, surgeries, or just dinner or tea. She says that she always wanted to hear from friends and family except in one particular point in her treatment, when she had to make the decision of a single or double mastectomy and what kind of reconstruction to get. My aunt, who’s husband was a career Naval officer, also felt that the support groups and psychologist at the Navy hospital were helpful and encouraging.
An acquaintance from my hometown who survived breast cancer twice, had the opposite opinion. She says support is a tricky thing. People can say the wrong things and mean well, and they can also say the right things and not be genuine. It was hard for her to open herself up to people because she was sensitive to their intention. She believes support is essential, but she was picky about whom she told.”I developed a radar for who was asking questions because they cared and who just wanted information. I had to draw that line because it was life-threatening for me. I knew they didn’t have hope for me.”
Abrupt, invasive questions often came from neighbors. She felt they wanted to know all the details, but they didn’t expect her to live because she had a more aggressive cancer.She felt like people in support groups couldn’t relate to her because at the time of her first diagnosis, she was very young and had a much more aggressive form of cancer than the other women in the group.
When I asked my mom how she felt when family and friends called, visited, or offered help, she explained how support can be, well, a drag.”In the beginning it’s overwhelming to have people call because you’re dealing with the idea that you have cancer, and just that thought alone is overwhelming,” said my mom. “Cards, texts, and emails are nice, but it’s hard when you feel like people expect you to get back to them. It’s too much to worry about their shock. There were days I didn’t even want to think about it, so when people who just found out would ask me about it I didn’t even want to call them back. Later it feels better, and I felt more cared for and loved.
“You want to move on, and you don’t want people to treat you like you’re going to die, but you don’t want them to ignore you either. It’s bigger than having a bad day. It’s a weird mix. When I’m with family, and they don’t ask what the latest is, it makes me feel bad.”A family friend who practices law in the San Francisco Bay Area, endured the gamut, from caring to meddling.
“It was burdensome to have to deal with other peoples’ anxiety about my breast cancer,” she said. “Even though they meant well, they knew some hot-shot doctor somewhere, and they wanted me to send them my test results. I felt resentful that my breast cancer was turning into a vehicle for them to stroke their ego.”She chose not to do chemotherapy, and just do radiation and natural healing like a hard-core, non-fat diet. This was very hard for family and friends to accept. She felt overwhelmed when they tried to give advice or doubted if her medical team and treatment decisions were adequate. “They wanted to fix things,” she said. She feels that for people who have cancer and are not asking for advice or help, then the best way to be show you care is to be supportive of their decisions whether you agree or not. She felt most loved when people offered to come over to have tea or take her out to lunch. It let her know that they enjoyed her company and valued her as a person.
She was reluctant to reveal her diagnosis at work because she was afraid that other people in the professional community would write her off and think that she was toast.
“I’m a lawyer, for goodness sake. I’m middle aged, but I’m at the peak of my career. People are relying on me, looking to me for strength and hope. I’m supposed to be vibrant. I felt self-conscious about living up to that when I was disrupted by health stuff.”
As a daughter of a cancer patient, I too have been buffeted by different types of support. I love it when people ask how my mom is doing, how I’m handling everything, and then just listen and say one or two simple supporting comments. And that’s it.
But lately my patience for not-so-therapeutic listening has vanished. I find myself getting angry when my mom comes up in conversation, and people just want to tell me about their grandma, brother, friend, pastor who had cancer and survived and how, or died. “It’s not about you!” I want to yell. Every cancer is so different. What makes them think my mom’s journey will be anything like theirs?
What I hate the most is the the comment “Everything will be OK.” Even if that were the case, the whole experience is extremely frightening.
The best support you can give a cancer patient is to ask how she’s doing—and to ask like you care—and then just listen. You’re not a fixer; you’re not a cheerleader; you’re not a wise one. You’re a listener.