What do you think is the most commonly asked question of a person who has, or has had, cancer? If you guessed, “How are you?” you got it right.
But as caring as those words may seem, they are often not helpful and may even be harmful. At a celebratory family gathering a year after my own cancer treatment, a distant relative asked me just that. I answered, “I’m fine.” She then pressed, “How are you really?”
“Really” I was fine, I told her. But what if I hadn’t been? Would I have wanted to launch into a description of bad medical news at what was supposed to be a fun event? Would I have wanted even to be reminded of a bout with cancer? Although my relative undoubtedly meant well, the way her concern was expressed struck me as intrusive.
A diagnosis of cancer can tie the tongues of friends and family members or prompt them to utter inappropriate, albeit well-meaning, comments. Some who don’t know what to say simply avoid the cancer patient altogether, an act that can be more painful than if they said or did the wrong thing.
A new book, “Loving, Supporting, and Caring for the Cancer Patient,” by a man who has been treated for a potentially life-threatening cancer and who has counseled dozens of others dealing with this disease, got me thinking about the best ways to talk with someone facing cancer — its diagnosis, treatment and aftermath. The book’s author, Stan Goldberg, happens to be a communications specialist, a professor emeritus of communicative disorders at San Francisco State University.
Dr. Goldberg learned at age 57 that he had an aggressive form of prostate cancer. He said in an interview that cancer patients too often encounter people who assume the role of cheerleader, saying things like “Don’t worry about it,” “You’ll be fine,” “We’ll battle this together,” “They’ll find a cure.”
However, he observed, “Words of optimism may work in the short run, but in the long run they can induce guilt if the cancer is more virulent and defeats a person’s best effort.
“I was dealing with the possibility that my life would end shortly, or if it didn’t, it would be changed dramatically. False optimism devalued what was going on in my body. People were insensitive not from a lack of compassion but from not knowing what is really helpful.”
What he and those he’s counseled have found to be most helpful were not words but actions, not “Let me know what I can do to help” which places the burden on the patient, but “I’ll be bringing dinner for your family this week. What day is best for you?”
As a self-described “independent cuss” reluctant to ask anyone for help, Dr. Goldberg said his son taught him this important lesson. “He came to my house during my recovery from surgery and said ‘Stop lifting those boxes, Dad. I’ll do it for you.’”
Another author of very helpful books on living with cancer is Dr. Wendy Schlessel Harpham, who has had a recurring cancer for more than two decades. She suggests that people offer specific ways they can help. For example, they may say they can shop for groceries, care for children, take the dog for a run, or accompany the patient to the doctor, and then be sure to follow through with the offer.
Many people now use online sites like caringbridge.org to keep people up to date on their health and needs and or organizing platforms such as mealtrain.com or lotsahelpinghands.com to ask for specific help.
Dr. Harpham said she came to dread the query “How are you?” because “no matter how it was intended, being asked ‘How are you?’ rattled my heightened sense of vulnerability. I found myself consoling those who asked and then fighting the contagion of grief and fear. Even when the news was good, I didn’t have the energy to include all the people who wanted updates.”
Dr. Goldberg suggests that when visiting a cancer patient, people talk less and listen more. ”Often the greatest support comes from silently witnessing what a person with cancer is experiencing,” he wrote. “Sometimes only a calm presence and compassionate listening are necessary. Silence becomes the breathing space in which people living with cancer can begin difficult conversations.”
In an article in Prevention magazine, Melissa Fiorenza offered this helpful suggestion for what to say to someone you deeply care for: “Feel free to cry with me, to talk, or not to talk. I’ll take my lead from you.”
When talking, Dr. Goldberg suggested, “engage more in conversations and less in question-and-answer interactions.” But if questions are asked, they should be open-ended ones like “Do you want to tell me about your cancer and what you’re going through? Maybe I can find ways to be helpful.”
Among the many suggested “don’ts” are these:
• Don’t make light of a patient’s physical changes by saying things like “At least you finally lost those extra pounds.”
• Don’t talk about other patients with similar cancers, even if they fared well – no two cancers are alike. It’s fine, though, to ask if the patient would like to talk with someone else who’s been through it.
• Don’t say the patient is lucky to have one kind of cancer rather than another, which downplays what the person is going through. There’s nothing lucky about having cancer even if it’s a “good” cancer.
• Don’t say “I know how you feel” because you can’t possibly know. Better to ask, “Do you want to talk about how you feel, how having cancer is affecting you?”
• Don’t offer information about unproven treatments or referrals to doctors with questionable credentials.
• Don’t suggest that the person’s lifestyle is to blame for the disease, even if it may have been a contributing cause. Blame is not helpful. Many factors influence cancer risk; even for lifelong smokers, getting cancer is often just bad luck.
• Don’t preach to the patient about staying positive, which can induce feelings of guilt in the patient if things don’t go well. Better to say, “I’m here for you no matter what happens,” and mean it.
• Don’t ask about prognosis. If the patient volunteers that information, it’s O.K. to talk further about its implications. Otherwise, it’s better to stifle your curiosity.
• Don’t burden the patient with your own feelings of distress, although it’s fine to say, “I’m so sorry this happened to you.” If you feel overwhelmed by the prospect of interacting with a person with cancer, it’s better to say, “I don’t know what to say” than to say nothing at all or to avoid the person entirely, who may then feel abandoned and think you don’t care.