Top Ten -- Input Needed!

My top offensive remark was:

Upon hearing I was going to have a mastectomy, a coworker remarked:  "now you can get that boob job you've always wanted."

I went out with a bunch of friends the other night and one guy, ultimate car salesman but really nice guy says, "I don't know what you have been doing for the past year or so but you look better than ever and ten years younger!"  He knows damn well what I have been doing (chemo, surgery, rads, etc) but it was a sweet, funny way to say it!

You're going to get a lot of replies!  There have been a bunch of threads of the worst thing people have said, but not so much of what's the right thing to say.  Some of the things in the past have been so out there you can't believe it. 

I think the worst thing someone can say when they find out you have breast cancer is to tell you about so-and-so who died of it.  And the opposite, is the ones who say "you'll be fine, no one dies from breast cancer any more."

Another one I hate:  "You didn't eat enough broccoli, asparagus, tofu.....whatever."  "You need to get rid of your stress, that's what causes cancer...." 

But then what's the right thing to say?  I'm not religious, so I don't necessarily want prayers, but I do appreciate the thought behind the sentiment.  Mostly I think we just want someone to commiserate with me.... what I most appreciate is something to the tune of "that must really suck!"  And I can nod, and chuckle a bit, and go get in the car and cry a little if I need to.

I think the fact that they even asked you this indicates they'd likely know the things to say or not to say.  I think what really irked me though was being told how good I looked bald (did I look that awful with hair?) and being told countless times by people that they had a "friend" whose hair came in curly.  Ya, what's your prognosis is another irritating one............as is "did they get it all?"

I try not to come back with snappy comments because I think often people say the 'wrong' thing because they are uncomfortable.  I have LE and wear wraps quite often.  I'm quite tired of people asking "what does the other fellow look like?"  (As if I've been in a fight and my arm is injured.)  I'm a bit ashamed at my responce to one person who just happened to comment on the wrong day.  I said, "I have no idea........I had breast cancer".

Most appreciated:

The many people who have told me they are praying for me. I'm religious, so this gives me great comfort.

A few days after I looked in the mirror and was devastated because I thought I looked years older than when I started chemo, a young woman I know told me how much younger I looked with my new wig, and how much it suited me (we're both Orthodox Jews covering hair since marriage, so I've been wearing hats/scares/wigs for years, as had my friend).

The thing that touched me most was not words but an action. A friend was at my house and saw that the dishes weren't washed. All she said was, "You go sit down". Then she cleaned my kitchen. Not only practical, but made me feel so loved.

Also the meals sent over for my family touched me.

Leah

Hi, Webbie ~ These aren't specific comments, but more general suggestions... 

"Let me know if I can do anything."  While well-intentioned, it's kind of empty and meaningless.  Much better to say something specific like,  "Let me make dinner for you and your family.  I'll drop it off.  What day would work for you?" 

And, above all, slow down and be prepared to LISTEN like you really care.  I ran into a friend one day shortly after my dx, and I still recall how she just listened to me pour my heart out about being told unexpectedly that I needed a mast, and not knowing what to do.  I knew she had to get home and had plans that evening, but she stopped everything to focus on me because, as she later told me, she could tell that I really needed to talk.  It still makes me want to cry when I think of how selfless her 1/2 hr. of attention was at that point.  It wasn't what she said -- it was that she listened.   Deanna

The very worse one I have heard way too many times is "You will beat this, you're a strong woman"....NO I'm just a woman who wants to live and will do whatever it takes to do that....do they think that women who aren't so strong are not going to go through it all or what? That's the worse one...I too have gotten so many times stories of how relatives have died from it...I"m like Gee, that's what I wanted to hear...

My favorite thing for them to say is "I will keep you in my prayers".

Exactly Linda, we don't have much of a choice but to go through all we've been through....I get so tired of it, that I feel like screaming at them....I'm not strong, I did not do well thru chemo, the surgery wasn't that bad, but the rads are making me exhausted, I'm not strong....I guess they really Just plain don't understand.

I think one can definately list things that no one with BC wants to hear such as stories about your relative who died from BC or ignorant folk questioning their treatment choices or for those getting reconstruction any remarks envious of the "free boob job".

Coming up with a top 10 for what to say is harder. Its probably impossible. What one person likes to hear another hates. A lot of folks on these boards hate being told they are strong. On the other hand, I enjoyed hearing it from my colleagues. I wanted them to see me as strong and worked at giving that image even during the worst of treatment so I liked knowing I was succeeding. And while many like being told they are being prayed for, some non-religious folks don't.

The thing I liked was when people let me determine how far to carry the BC discussion. If I want to talk about it, ask how I'm doing and listen intently and I'll let you know. If I move the conversation on to something else, let that happen and let me have some time to relate like a regular person rather than a sick one.

lovemyfriend, letting your friend know you are thinking of her and then letting her guide the conversation is a good way to go. 

Like others here, I did appreciate getting a note in the mail or a humorous card that let me know someone was thinking of me. 

Friends dropping off a dinner for thr family has been great. Also the random cards from work. I'm not working during treatment & work is not pressuring me to come back yet, but the rad techs keep asking me if I'm working.

Sometimes people really don't know what to say. When i was at a family function,a cousin came over to talk but was really lost for words, so I filled him in w/ my what the pending treatment was. When we were done talking, he said to me"thank you for that. I really did not know what to say."

One of the best things was when my friend who lives two blocks away would just call and say, "I'm headed to the grocery store -- can I pick something up for you ?"  We both live alone in apartments in the city -- so that was just the best.

I don't think anyone understands you're never "cured" of cancer, you're in remission...

Best: any variation on "I'm so sorry you have to go through this" followed by willingness to listen if I want to talk and go away if I don't

Worst: Anything that intimates that this was somehow my fault. Like the person at church who said, "90% of cancer is avoidable with lifestyle changes. You know, you're not at your optimal weight." I secretly hope she gets lung cancer on my nasty days. (I understand that if you have lung cancer noone will believe you didn't smoke.)

Oh, oh, and I almost forgot. I wasn't receptive to "This journey can be a gift if you allow it to." But it was from another survivor, so I did give her some leeway -- it may have been true for her.

Oh, lest I forget, another pet peeve -



"Chemo is doable!"

. . . and then when I didn't need chemo:

"But you have a positive node! You should do the chemo!!! Fight this aggessively!!!!" (it's a micromet, you idiot and my Oncotype score was 12)



AND- DRUMROLL - THE ULTIMATE WORST THING EVER SAID TO ME:



Said by radiologist and her tech assistant right before my MRI guided biopsy last New Year's Eve:



"You know, you would be better off to have them both taken off, because then you won't have to worry about them anymore because it won't come back!"



IDIOTS again because it can indeed come back, even with a double mast. Believe me, I reported them to my breast surgeon at the time, who was livid at their comments.



I am happy to say the biopsy showed nothing in the other breast and I had a lumpo with one micromet and just finished rads. Now on Tamox.



Ignorance is unstandable. Ignorance with LACK OF TACT is unforgivable.



As an aside - the tech and radiologist were both morbidly obese. Forgive my cattiness . . .

Cathi, I agree with you about the "hero' or "inspiration" labels - like you, I have BC and am dealing with it as best I can. I refuse to have BC as my identity - and I would rather NOT have BC and NOT be a "hero" or an "inspiration" or being called "courageous" or "brave." It just sticks in my craw.