Wednesday, November 05, 2008

Rules for talking to people who have cancer. (Or any serious illness, for that matter.)

I'm new at this, so I only have a couple:

1. Do NOT mention people you know who have died from the disease. I mean, Jesus, do I really even need to say this?! WTF?! I don't care how well-meaning you are. I know that you are trying to make a connection and to tell me that this issue has deeply touched your life. But that is not a connection - that is about *your* needs, not about the other person's needs. Along these same lines, do not hint about people who have not done so well, do not make jokes about the other person's potential life span, just do not allow the specter of death to enter the conversation unless the person with the illness wants to bring it up.

2. Please don't look to the person with the illness to reassure *you*. That means not asking hopeful/panicked questions about the stage of cancer, about how early the disease has been caught, etc. If you want to ask about treatment, only do so if you can take it in stride. That means *not* looking or sounding freaked out. A good rule of thumb: you probably don't know much about this person's specific situation, so don't make assumptions, and please don't look worried when someone is telling you that they're feeling very positive - that is extremely off-putting and, for anyone with anxieties, anxiety-provoking.

I'm sure that there will be more to follow.


Daisy Deadhead said...

Am I allowed to suggest herbs? (turkey rhubarb, burdock, slippery elm)

Some people corner me and demand to know what herbs have historically been regarded as anti-tumor, anti-cancer... while still other people act like it's rude if I mention anything like that. It seems to be roughly 50/50. I guess there's no steadfast rules for something as esoteric as that!

Hope you're doing well! WE TOOK BACK THE COUNTRY YESTERDAY!!!!! :D

Green said...

I'd like to know your opinion on having people make suggestions of things you could try, clinical studies you could try to get into, etc.

Thinking good thoughts for you!

Plain(s)feminist said...

Well, here's the thing about offering advice for treatment. First, a lot of natural remedies actually counteract the chemo, so they are best not taken at the same time (my oncologist's approach is to tell me to bring in a list of what people have suggested to me, and we can look them up together). Second, so far, the majority of the advice I've received has been in regard to positive thinking, which I believe in as much as anyone, but which I'm beginning to see as kind of an interesting comment on the way we tend to look at serious illness. When someone has diabetes, for example, we usually respond by assuming they should watch their sugar intake. When someone has cancer, we seem to put our faith in the patient's ability to self-heal. But we do this very selectively - generally, only with the illnesses that really frighten us.

Third, with re. to clinical trials - I think it's always good, in general, to know about clinical trials. In my case, no one has recommended one to me because the treatment is pretty clear cut. If they thought my cancer was incurable, or if they thought that it was unlikely that they could treat it, then I would be looking for a clinical trial. In fact, if my cancer was one that responded to the drug Herceptin, then there was a clinical trial that they would have suggested for me, not because they thought it would necessarily help me, but because I would have been a good research subject for such a trial.

In general, I think that when offering any advice about someone else's medical situation, it's probably best to either wait until they ask you for it or else to ask if they would be interested in hearing what advice you have to offer. This gives the person to say, "yes, thanks," or "actually, I have a team of doctors and I'm going to stick with their plan for now."

It's not just cancer, by the way - I had surgery many years ago, and I was a little put off by the comments and advice I would get from people who knew nothing about my situation and who offered this to me without thinking about what I wanted/needed.

Anonymous said...

I would have to say no, it's not ok to suggest herbs. What someone does with their own body is their choice. And the "self-healing" suggestions are off putting for so many reasons.

Anonymous said...

OMG, as soon as I posted that comment, your word verification came up, "powenis". Lol.

Daisy Deadhead said...

One of the popular things people who are on chemo like is something called GREENS VIBRANCE, which is a freeze-dried greens drink. Unfortunately, yes, it does taste like grass.

Danielle, I certainly agree, but many folks don't know anything about alternative medicine. If I hear someone has a yeast infection, thrush or diarrhea, I WILL suggest probiotics like acidophilus, and sorry, I can't restrain myself from doing that. It's too simple and harmless, and I've had too many people call me at 2 am and thank me profusely for my advice and tell me they had no idea.

That isn't the same as foisting a "cure" on someone, which I feel is probably iffy at best. (I never do that; I just report on what has been historically used.)

The greens drinks are great though--the equivalent of a large salad for someone who can't get one down. If your appetite goes kaput, check em out. :)

Anonymous said...

A yeast infection and diarrhea is not the same as having breast cancer. Another thing to point out is that if someone has breast cancer, most people in their life are going to find out about it. Diarrhea, not so much. The scenarios are very different. If your concern is really that someone doesn't know about alternative methods (which, I can't imagine who doesn't know about them anymore), then I would suggest educating the public in other ways such as writing articles, or other types of advertising to the public. Preaching at someone with a serious illness is rude at best.

Plain(s)feminist said...

I guess I would say, wait until someone asks for advice, or at least until they start complaining about their symptoms. I'd agree with Danielle that mild infections are in a different category. I tell everyone I know to take yogurt when they take antibiotics, for example. People can easily decide to follow or ignore that kind of advice. But when someone has a serious illness, the stakes can often feel a lot higher, and innocent advice can be overwheming (there's also a lot more of it than one normally gets with, say, a cold or diarrhea).

I think it's also ok to say, "I know a bit about alternative medicine, so if you're ever interested in talking about that, let me know."

Anonymous said...

Yes, asking is completely different.

Daisy Deadhead said...

Preaching at someone with a serious illness is rude at best.


I've never done this, and resent the implication that I have. I'm well-known in my community, and people know where to find me.

A yeast infection and diarrhea is not the same as having breast cancer.

I was referring to common side effects of chemo.

Wide Lawns said...

Here's mine: Do not ask people who are having radiation if they glow in the dark. I found this tremendously annoying, especially after the 700th time someone said it, not original at all and just sort of stupid.

Instead ask them if they would like some sorbet.

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