How to talk about your cancer

Yesterday we told you how to talk to someone with cancer. Now patients, it's your turn for pointers

By Mary Elizabeth Williams

Published December 14, 2011 1:00AM (EST)

  (iStockphoto/Akin Bostanci)
(iStockphoto/Akin Bostanci)

Lots of stories have been written on how to talk to someone with cancer -- the subtle protocols for tactfully dealing with such an emotionally challenging ordeal. I wrote one of them myself, just yesterday, from the authoritative perch of someone who has Stage 4 cancer. But this year I've also dealt with a close friend's cancer, and the loss of a family member to it, so I know what it feels like to stand in the frustrated, terrified place of watching a loved one go through hospital trips and weird side effects and the ravages of disease. Those of us who care about people with cancer need support, guidance and tactful handling, too. So gather 'round and listen up, cancer peeps. Here's what your posse may be too polite to tell you.

Rule 1: You have to take responsibility for setting the tone.

Perhaps you're a total ham. Maybe you've never enjoyed the limelight. It doesn't matter. Because unless you've got a neighbor going through an ugly divorce, you are the top news of the day in your social circle. Get used to attention. And accept that it's your job now to figure out how to play this.

Are you a reluctant, "don't ask, don't tell" cancer person, an in-your-face pink ribbon lady, or something in between? It's time to become the person you need to be to thrive during this thing -- which is not, by the way, the person you imagine your friends or colleagues or even your kids want you to be. So say, "I promise I'll tell you if there's news" if you don't feel like talking. Joke around if it all seems absurd. But understand that no one will know how to talk to you if you don't start talking first.

Rule 2: Don't go pity fishing.

It's a dangerously easy thing to do, what with everybody looking so sad whenever they run into you. And yes, it sucks to be you right now. But if you've ever posted a status update that includes the sentence, "Sigh." – cut it out. If you're having a rough day and need to talk to someone, talk to someone. But just because you have cancer, it's no excuse to start sounding like a person who should have a sad trombone wah-wahing every time she opens her mouth.

Rule 3: You are a person with cancer, not a cult leader.

It's great that this experience has lit a fire within you. And if you can use it to encourage others to get mammograms or wear sunscreen, that is fantastic. Be an advocate! But don't be a scoldy pants.

Your new vegan Buddhist path is all yours to tread. Your mom, however, may well want to go right on microwaving her leftovers in old plastic, and your college roommate may not be moved to give up her Camels. Likewise, your friends who have or have had cancer are probably pretty comfortable with the choices they already have made regarding their health plans and maintenance. You don't need to lecture anybody. You don't need to gas on about your awesome new juicer. Rest assured that your loved ones are plenty wigged out about health and mortality now anyway. Let them deal with it in their own ways.

Rule 4: Don't pretend nothing has changed.

You may not be the type to wear your cancer on your sleeve, but you have to let people know your changing limits. Otherwise, you're selling the people in your life short – and potentially setting them up for disappointment – by acting like it's all business as usual around here.

Especially around the holidays, it's tempting to go all people-pleasing superhero. Yet as a friend sagely observed recently, Wonder Woman didn't have cancer. I know it is heartbreaking to realize you can't do all the things you used to do. But be honest with your boss if your new vomiting routine is getting in the way of paperwork. Tell the PTA to get another cupcake baker this year. Admit to your girlfriend you're too wiped out for sex. You are not doing anybody any favors by letting the people who count on you expect more than you can give.

Rule 5: But remember the cancer card is not a hall pass.

You may not be as emotionally or physically available these days, but you have not been entirely relieved of your duties as a friend, lover or family member. The people in your life are still losing jobs and going through heartaches and having their parents die. Be sensitive to that. You are not allowed to get through an entire conversation with someone who cares enough about you to be dealing with your crap without asking, "And how are you?" And then really listening to the answer.

Rule 6: Let the people who can help you, help you.

I know it's bad for you, but I really cannot begin to tell you how awful your cancer is to the people who love you. It is making them very angry and scared. They are losing sleep over this. And frankly, unless they're oncologists, there's not a whole lot they can do about it. That's why it is not selfish to let them bake you cookies and take your kids to the park. It is some seriously life-affirming magic, is what that is.

A lot of people you thought you could count on have been dropping the ball all over the place these days anyway, haven't they? So don't be stoic. Let other people be generous. Let them feel a measure of control in a terribly out-of-control situation. Grant them a little flipping of the bird at death itself – they deserve that pleasure.

Rule 7: Be kind.

People can say some really stupid stuff. They will charge at you with their irrational fears and their tactless advice. Some of them may, in fact, behave in ways that make you realize you need to cut them off. That's OK – it's imperative to have boundaries, and toxic people need to be on the other side of them. You're likely pretty cranky lately anyway.

But a lot of other people in your life are trying. They're worried about you. They want to help, but they don't know what to say. They don't know what to do. So they goof up sometimes, say the wrong things and behave in imperfect, human ways. Be gentle with them. Explain that you'd rather not talk about horrible side effects right now, thanks, or admit that you need to go home and take a nap. And go right on loving them. This is new and difficult territory for them, too. But you can show them how to get through this. You need to. Because someday they may be right where you are now. And when that day comes, they're going to need help. They're going to need it from someone wise and giving and, unfortunately, experienced. Someone just like you.

Mary Elizabeth Williams

Mary Elizabeth Williams is a senior writer for Salon and author of "A Series of Catastrophes & Miracles."

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