what you should say

A lot has been written about what you should and shouldn’t say to people who tell you they or their close family member has cancer. Or, to people you see in everyday life who are bald and look sickly.

I don’t really know what you should say. Every cancer patient I have met has his or her own pet-peeves. I myself go through phases where I am annoyed by everything people say, and then, other times, when I’m touched by everything people say. If I try to put myself back in my pre-cancer mindset and think of what I would say if my friend told me they had cancer–or if I Facebook-stalked them and found their blog which revealed it–I’m not certain I would say the right thing either. It’s undeniably awkward.

The most important thing, I think, is to be sincere. And if you sincerely don’t know what to say, to show concern. Or care. Or even curiosity. It’s been a year now: I am adjusted, I am sufficiently supported, I am well-informed, I am well equipped to deal with whatever may come my way. I am most touched, not by all the cliches that people throw at me for lack of anything better to say, but by the people who just say whatever’s in their heart. Everyone has their own way of looking at things–that’s what i’m interested in hearing. Some people will step up and become better friends/family as a result of this–i’m more touched by and grateful for that than anything else. Others will fade into the background–I don’t blame you. It’s to be expected. It’s hard to talk about, it’s hard to hear about. It’s hard to read about. If you made it this far into this blog, you’re doing well.

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The New York Times had an interesting discussion on the topic a few months ago. Among the things you should say, according to them, “Don’t write me back.” “I should be going now.” “Would you like some gossip?” “I love you.” I’m indifferent on these. Though I do like to hear the last one.More controversially, what you shouldn’t say, according to them: “What can I do to help?” “My thoughts and prayers are with you.” “Did you try that mango colonic I recommended?” “Everything will be OK.” “How are we today?” “You look great.”

A lot of these are just cliches that fly in one ear and out the other; people say them all the time. These fade into the background and ultimately don’t mean much so I don’t have huge problems with any of them. I mean, if you can’t say a cliche, what can you say?

That being said, personally, I don’t find “Everything will be OK” in particular to be helpful. If I–or anyone–knew for certain that everything will be OK, I wouldn’t be writing this blog. The movie 50/50 touches on this too–when people say it in the movie, you can almost tell that Joseph Gordon-Levitt’s character doesn’t like to hear it either. Similarly, “Are you OK?” implies that i’m not OK. Maybe i’m not OK–I have cancer–but don’t remind me of that by asking such a leading question. Anyway, don’t I look OK?

If you have said this or anything else that I write about as “wrong” to me, I don’t hold it against you. In fact, I probably didn’t really notice. I’m just writing about hypothetical situations here, to help you out if you stumbled upon this and are wondering what you should say to me or to someone else you know.

It’s also not really helpful to tell me about your uncle/father/grandfather/friend’s friend/grandmother/aunt/cousin/cousin’s friend who had cancer, but I don’t know what kind of cancer, and that he/she is fine now, or alternately, not fine/dead now. I am happy/sympathetic for you. But maybe we should talk about it later. What you’re saying has no bearing on my disease, and I thought that’s what we were talking about.

I also hate when people–mostly not my friends or family–ask “How is your pain?” When I was in the hospital, everytime someone came into my room, and now, whenever I go see the doctor, someone asks “How is your pain?” It’s such a weird phrase and I always have to think about the mechanics of it before I answer. My pain? It sounds like my pain is being personified, or that it’s an appendage, like “How is your sister?” Or, “How is your leg?” And, doesn’t it imply that I have pain, when, in fact, I haven’t had much pain since after I recovered from the surgery?

Kristin, another young adult (now former) cancer patient whose blog I read had a great post that goes further into what you shouldn’t say. Like I say, everyone has her own preference. A highlight:

“Don’t stop treating your [young adult with cancer] as the husband, wife, brother, sister, niece, nephew, son, daughter, or friend that they are. While thoughts and conversations of cancer and treatment may dominate practically everything early on, your [young adult with cancer] still wants to be thought of as a friend/partner/sibling/child first. Don’t try to shelter [him or her] from your personal dramas or underplay everything you share with “Of course this doesn’t even compare to what you’re going though…”  Even if that’s true, and it may not be, your [young adult with cancer] probably hasn’t suddenly become a totally self-obsessed narcissist overnight and likely wants to still participate in the give and take that sustains loving relationships.”

Another young adult survivor, Jenna, asked people to dance the twist for her and send a video instead of saying anything.

This is a lot to take in. The short version of this post: I think it is most important, not to say nothing. And, don’t pretend it’s not there. It is there. All the time. And at least for me, it’s not going away.

Postscript: As if this advice wasn’t confusing enough, I touched on the subject again in “switching shoes.”