How to talk to people about cancer

Peter Rukavina

Seventeen years ago this month Catherine was entering her 8th month of pregnancy. We’d just moved into our house at 100 Prince Street, and complicated, dusty renovations were underway. For Catherine it was a hot, uncomfortable summer, and it was my job to try to make things better.

One August night I went along to the video rental store to get a movie, thinking that would be a good distraction. I came home with a VHS tape of Angela’s Ashes, the film adaptation of Frank McCourt’s book of the same name. I thought it would be a light summer romp through Ireland.

I was wrong.

Here’s the introduction to the Spark Notes summary of the book:

The narrator, Frank McCourt, describes how his parents meet in Brooklyn, New York. After his mother, Angela, becomes pregnant with Frank, she marries Malachy, the father of her child. Angela struggles to feed her growing family of sons, while Malachy spends his wages on alcohol. Frank’s much-loved baby sister, Margaret, dies and Angela falls into depression. The McCourts decide to return to Ireland. More troubles plague the McCourts in Ireland: Angela has a miscarriage, Frank’s two younger brothers die, and Malachy continues to drink away the family’s money.

Careful readers will note that packed into that one brief paragraph is one baby death, the death of two children, and one miscarriage.

Angela’s Ashes, in other words, is not the film you want to watch while you are uncomfortably 8 months pregnant.

A few weeks later, we were over for supper at a friend’s house; sharing the table with us were a couple from Boston, old friends of our host. As the evening progressed, I took the opportunity to relate the story of my ham-handed movie curating.

One of the old friends, perhaps not understanding the larger message of my story, decided this would be a good jumping-off-point for a detailed description of every horrible thing that had ever happened to any of her parents’, grandparents’, cousins’ and in-laws’ pregnancies. “My dear old Aunt Gertie had 17 miscarriages,” she might have said (the details escape me), “including several involving packs of rabid wolves.”

I think of that night often, and I thought of it again this afternoon when I came across a pointer from Jason Kottke to 10 ways to have a better conversation, a TED talk by journalist Celeste Headlee.

Number 6 of the 10 is:

Don’t equate your experience with theirs.

In the video, Headlee elaborates:

If they’re talking about having lost a family member, don’t start talking about the time you lost a family member. If they’re talking about the trouble they’re having at work, don’t tell them about how much you hate your job. It’s not the same. It is never the same. All experiences are individual. And, more importantly, it is not about you. You don’t need to take that moment to prove how amazing you are, or how much you’ve suffered.

I am an offender in this regard as much as anyone: I’m not naturally comfortable relating to other people, and in my discomfort I’ll often reach for an “oh, X happened to you – X happened to me too!”

Sometimes this is fine: it can be a way of establishing common interests, or common struggles; often, though, I should follow Headlee’s advice, and let their X stand on its own, without a need for buttressing by my X.

Since Catherine was diagnosed with metastatic breast cancer three years ago, I’ve had a lot of uncomfortable conversations about cancer.

More than once, while accompanying Catherine to the PEI Cancer Treatment Centre for an appointment, I’ve run into someone I know in the waiting room, someone obviously there for cancer treatment for themselves or a loved one. What do I say?

Conversely, the last three years saw a gradual unflowering of the news of Catherine’s cancer through our community of friends, coworkers, acquaintances, and people we’ve never met before but who seem to know us.

I meet someone on the street who I haven’t seen in a few years; they know about Catherine’s cancer, but we’ve never talked about it. What do they say?

A couple of weekends ago the brake pad warning light came on in our Volkswagen. On Monday morning, I took the car into the shop and Dave, my mechanic, diagnosed the issue as being a stuck caliper on the left side. So while the brake pads on the right were almost brand-new, and had years worth of life in them, on the left side the pads were worn down to the thickness of a couple of quarters. Dave replaced the pads and the rotors, and the busted caliper, and by the end of the day I was on my way.

I’ve related my brake pad adventure a few times in the weeks since, and it’s never proved to be an uncomfortable conversation. None of the friends I’ve told the story to have felt compelled to tell me the story of their brake pads. Or how their father’s brake pads failed once and he plummeted to his death.

But brake pads are not cancer. Cancer is about life and death and struggle and suffering and hospitals and mystery. And talking about it seems almost necessarily uncomfortable. And so we run to conversational tropes to try to rescue ourselves from the discomfort.

Fortunately, despite the shroud of stress that surrounds talking about cancer, the 10 ways to have a better conversation are helpfully universal, and can work for cancer conversations as much as for any other:

  1. Don’t multitask.
  2. Don’t pontificate.
  3. Use open-ended questions.
  4. Go with the flow.
  5. If you don’t know, say that you don’t know.
  6. Don’t equate your experience with theirs.
  7. Try not to repeat yourself.
  8. Stay out of the weeds.
  9. Listen.
  10. Be brief.

Reading through that list I realize that I’m not particularly accomplished at any of them, although I’m trying. Headlee says number 9, “Listen,” is the most important, and I agree: we’re not very good at listening, most of us, especially when there is quiet to be filled up, and it’s in not listening where things often go off the rails.

Which is all to say that the way to talk to people about cancer is the way to talk to people about anything else.

Go with the flow. Ask open-ended questions. Stay out of the weeds. Listen.

Stuck?

Here’s a good place to start:

How are you?

Comments

Submitted by Andrea on

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This is really good. And I will need to read it again, and then again, and think about it. I know I'm quite guilty of the effort to relate through my own experience. But I'd love it if you could unpack the whole staying out the weeds business for me.

“Stay out of the weeds” is an interesting one.

In her TED Talk, Headlee focuses on the utility of leaving out the minutiae:

Frankly, people don’t care about the year, the names, the dates, all those details that you’re struggling to come up with in your mind: they don’t care. What they care about is you. They care about what you’re like. What you have in common. So forget the details. Leave ‘em out.

When talking about cancer, I’d define “the weeds” differently, and would recommend avoiding any of the following:

  • Relating the details of your own stories about cancer in a family member or friend. “My Dad had cancer; I know it’s hard” is fine. But anything more is bound to be weedy: hopeful stories (“My Dad fought really hard and he beat cancer”) are unhelpful to hear for those dealing with incurable cancers, and depressing stories are just, well, depressing.
  • Suggesting treatments or cures is most certainly the weeds. People living with cancer are already well-informed about their cancers and the range of treatment options available to them; hearing that your Aunt Gertie had success with Follicle Abrasion Therapy, that’s only offered in Austria, is unhelpful.
  • Presupposing that the metaphor in play regarding cancer is a military one: if you don’t know, don’t assume. “You’re going to beat this,” or “we’re pulling for you in this battle” might be helpful to some people, but not for others.
  • Don’t mention God. Ever. In any context.

(As a side-note, all of these are also best avoided in conversations about autism).

As to what’s not the weeds, I think everyone has their own comfort level. I have friends living with conditions that they have no interest in talking with others about at all, and I respect that. I also have friends with whom I’ve had helpful conversations about the ins-and-outs of their portable drug pumps.

That’s why asking open-ended questions, and then listening, is so important: it lets you gauge the comfort level. So if you ask “How is your chemotherapy going?” and the response is “Ok,” that’s going to take the conversation in a different direction than a response of “Well, I had a really bad reaction the first time, and so they’ve adjusted my dosage and I’m going in again on Monday.”

I think the most weedy aspect of all of this is one that’s hard to get around, which is that the process of living with incurable cancer, or supporting someone who is, changes a lot of things about time and distance and expectations and the future and how you regard life and death; this can lead to dissonance when talking with people haven’t yet had to confront this. Figuring out how to bridge that dissonance is a challenge for both sides of any dialogue; but when a way across the divide is found, it can lead to very powerful conversations.

Thanks for that. Considering that we all will eventually die, we really haven't developed much of an ability to discuss it. Nor health issues in general. And many other things. Are we any good at communicating anything at all? I will continue to ponder this topic.

I think there are two things working against the free and open discussion of death and dying:

  1. A fear that talking about something will increase the chance of it happening. This is irrational, but I think it’s a deep-seated human eccentricity.
  2. A fear that causes of death are contagious. I don’t mean physically contagious, but rather emotionally contagious. If we admit to ourselves that maladies can strike any of us, at any time, without warning, that opens up a kettle of fish that we’d all rather not have to deal with.

There’s also the fact that talking about living is, in general, more fun than talking about dying.

Interestingly, the most free and open discussion I’ve ever had about death and dying was with Shayne Connolly, who sold me my life insurance. The core of Shayne’s business is helping people realize that death and malady can strike at any time, so he’s very experienced at having conversations where talking about this seems like the most natural thing in the world.

Speaking of which: if you have dependents, get life insurance. Right now. One of the most bracing things Shayne ever said to me was that after you receive a cancer diagnosis you’ll never get insured for anything. So you need to get it before. And that’s right now.

Also, take out twice as much as you think you need.

Submitted by Laurie Kingston on

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https://emilymcdowell.com/collections/empathy-cards/products/died-of-lemons-empathy-card

and this one made me giggle:

https://emilymcdowell.com/collections/empathy-cards/products/smothered-with-kale-card

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Photo of Peter RukavinaI am . I am a writer, letterpress printer, and a curious person.

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