Cancer etiquette: How to talk to people with a dreaded disease

We desperately need something like a real set of rules when somebody has the illness. It’s easy to recognize the wrong things to say — especially after the fact — but what are the right ones?

(Jimena Estíbaliz for The Washington Post)

Shortly after he died of esophageal cancer, Christopher Hitchens’s book “Mortality,” a collection of essays chronicling his ordeal with the illness, came out and I read it. At one point, the renowned journalist recounts a brief encounter with a fan at a book signing.

The woman — a complete stranger, mind you — told Hitchens that her cousin had suffered from cancer, which had recurred after a remission “much worse than before.” Oh, she prattled on, “It was agonizing” and then he died. She left Hitchens with these words, “Anyway, I just wanted you to know that I understand exactly what you are going through.”

She did not — it’s impossible. One size does not fit all when it comes to cancer. For me, that anecdote brought back a rush of gaffes from friends after I’d been diagnosed with cancer in my 20s. Among the most egregious: I was told I needed to have “a good attitude” to survive (as though a sunny disposition is a cure); that “God is trying to get you to listen” (to what, exactly?); or the one that irked me the most: “everything happens for a reason.” (Note to others: Even if you believe this, keep it to yourself.)

35 years ago, I was diagnosed with cancer. This year, I’m celebrating my ‘cancerversary.’

Hitchens, who died 18 months after his diagnosis, rightfully suggested we need “a short handbook of cancer etiquette.” He outlined some topics: “Talk to me about my cancer, not someone else’s. Tell me uplifting stories, not those that are ‘intensely depressing.’ Don’t regale me with a nasty list of side effects and humiliations you may have suffered. Above all, don’t get ahead of me by suggesting, even with your kindest face, ‘Yes, I suppose a time comes when you have to consider letting go.’ ”

“Cancer etiquette” might seem like an odd concept, but we desperately need direction here. It’s easy to recognize the wrong things to say — especially after the fact — but what are the right ones? As Josette Snyder, a cancer care nurse at the Cleveland Clinic, has written, it’s about “interacting with someone with cancer in friendly, empathetic and appropriate ways. It’s showing that you acknowledge what he or she is going through — both physically and emotionally.” Still, it’s not always easy to be “appropriate.” We may be taken by surprise by devastating news, or stumble into it accidentally — such as by commenting on someone’s new haircut only to learn the hair loss is because of chemotherapy. (Yes, I once did that.)

The first rule of cancer etiquette, then, is to listen. Give your friend the time to say what they want, without interrupting. That can be hard when we want to rush in, try to comfort them or have questions. “Holding space for someone to experience their emotions in your presence … is most helpful for those around you,” said Whitney Read, a clinical social worker In New York who works with people with cancer.

A friend, who has Hodgkin lymphoma, sometimes wants to talk in depth about her treatment; other times not at all. When I’m uncertain, I’ll simply ask: “What’s on your mind today?” I remember when she suggested we get ice cream sundaes, meaning let’s keep it light. I’ve learned to follow her lead — by listening.

Snyder is emphatic about the second rule: “Don’t underestimate the power of nonverbal communication.” A good hug can make all the difference. So, too, can a favorite meal.

But wisely, Snyder added, “If you’re at a loss for words, acknowledge that — it’s a powerful statement.” Another friend whose father had an aggressive cancer told me, “Sometimes words are not necessary.”

Is it better to say nothing for fear of saying the wrong thing? To ignore the cancer, or even the person? No! Cancer is isolating and lonely, which experts say calls for a simple “I’m here for you” or “I love you.” They’re the same person they were before; don’t talk to them in hushed tones, shout at them as though they’re hard of hearing or turn away. So Rule No. 3 is pretty straightforward and comes from a long-term cancer survivor who shouted to me in an email: “DON’T TREAT THEM ANY DIFFERENT.” Okay, I hear you.

A friend who is in treatment for prostate cancer supplied the next rule, which is about the hollow-sounding “please call if there’s anything I can do.” People often don’t know what to ask for. (And it’s hard for some of us to say, “I need …”)

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Better to offer something specific: to deliver a dinner, walk their dog, do the laundry, take out the trash, ferry them to an appointment. Volunteer to set up a calendar on Meal Train or Give In Kind, which make it easy to organize meal deliveries for someone who’s ill. Or ask if they’d like a Caring Bridge site, which allows for private updates to be sent to a preapproved list.

Speaking of privacy, there’s no more important rule of cancer etiquette than this one: If someone has told you about their illness, consider it confidential unless specifically told otherwise. They may have confided in you, but not in other friends or colleagues. Read is unequivocal on this point: “Consent. Consent. Consent. This is not your story to share — double checking with your friend or family member about what they are okay with is most important.”

Another important rule: Unless asked, don’t suggest alternative treatments, practitioners or clinical trials. More often than not, unsolicited medical advice is intrusive. A high school friend of mine was blunt about this: “I do not believe ‘blue scorpion juice’ imported from Mexico will save my husband from his Stage 4 diagnosis.” Your intentions may be good; the impact, aggravating or even anxiety provoking if the person’s health-care adviser hasn’t mentioned blue scorpion juice.

Snyder also cautions us not to assure someone who has cancer that “everything’s going to be okay.” Who can know that? Alas, medical outcomes are not predicated on wishful thinking. Hope for it, but don’t say it.

How to deal with regret and forgive yourself for making imperfect decisions

As for the final rule, forgive yourself for mistakes.

It’s impossible not to say the wrong thing at some point, a friend reminded me, “because there’s no way to fully understand the unique cancer situation of each loved one.”

Who doesn’t make mistakes? We’re human. We bumble along. We’re scared for our loved ones, and for ourselves. When in doubt, ask your friend or loved one with cancer this question: “What do you need to talk about?” And listen to their answer.

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