What Not to Say

Interesting discussion recently in the support group on the things that people say to cancer patients that they shouldn't say. It was prompted by a posting from a blog at the M.D. Anderson cancxer hospital's web site called "What NOT to Say to People with Cancer." Pretty good advice in the brief posting: pay attention to individual needs, and act accordingly; be careful not to be too upbeat (lots of cancer patients hate to hear "Everything is going to be just fine!" when the patient knows everything isn't fine); be sure not tyo avoid people with cancer just because it's so uncomfortable a situation (which is often the last thing a cancer patient needs -- greater feelings of isolation when cancer can already be an isolating thing).

The article (and the group's discussion) struck me because I've kind of started all over with this. Two years ago, I got all of the sympathetic looks and odd statements of "support," and then things kind of died down as everyone got used to my watching and waiting. Now I'm being treated, and I'm getting the odd looks and awkward attempts at support again.

I've had three or four strange conversations with people in the last couple of weeks that have thrown me just a little. They were people who knew, or who had heard, that I'd started treatment and asked how it was going, and when I told them, they got all negative on me.
"That's horrible," said one.
"Well, I've had two years to get used to it, and I'm dealing with it all OK," I said.
"It still sucks," said my conversation partner.
"Yeah," I said, "but I'm in an OK place emotionally."
"Still," said the person, " It's cancer."
"Well," I said to my friend who couldn't read my 'be positive' cues, "I need to go now," and then I got my laptop and watched an episode of Jersey Shore online to make myself feel better.

But I can't get mad at people. Cancer does suck, and there's really not much good to say -- at least nothing that's going to make it all better. Maybe it's being a teacher that gives me greater tolerance for people saying things without thinking. Maybe it's having two years to get used to it all. But I really don't get sad or angry when people say things to me that they shouldn't say.

Of course, I get pretty angry reading what some of my support group members have had to deal with. One person's wife told the dentist what was going on with her husband, and the dentist's response was, "Well, we all have to go sometime." (Probably the dentist from Little Shop of Horrors.)

Someone else told a friend she was on CHOP chemotherapy, and the friend said, "So if it doesn't work, how long do you have?"

Someone else was told she was getting the wrong kind of chemotherapy, because a friend of hers had a different chemo that didn't make her lose her hair. Then another time a relative told her "If you tell yourself you don't have cancer, then you won't."

Lots of people hate the whole "Well, you have the good kind of cancer, anyway" comment, which lymphoma patients seem to get a lot. And it's really kind of funny -- some people say I have the good kind, Follicular NHL, because it's slow-growing. Others say more aggressive types are the good kind because they are more likely to be cured. I guess it's all in the perspective. (Apparently there's a Curb Your Enthusiasm episode with a running joke about which kind of Lymphoma is "the good kind," but I haven't seen it.)

Anyway, in the end, I think I'd rather have someone say the wrong thing to me than avoid me completely. I can rationalize receiving an insensitive comment -- at least there's some attempt at making a connection there.