The dumbest things people have said to you/about you
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Dental assistant when I explained why she needed to put the blood pressure cuff not on my at-risk arm: "Oh, you're a survivor! Congratulations!" Um, thanks? (Note stats below.)
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People can't seem to grasp that my cancer is "forever". They keep asking when will it all be over.
"When will you get your port removed? When do you get to stop treatment?" It doesn't bother me most of the time, but every now and then I start to pity myself, because not one member of my family or friends or coworkers or even my acupuncturist, apparently, could bother to google "Stage IV cancer".
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You know it's almost asparagus season, then I'm sure we'all all be grand. 🙄
People don't get it, until they get it. Even then it's not going to be the same experience as someone older or younger, depending on their stats and stage.
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Some people leave me speechless
At a cancer support group meeting a woman who had uterine cancer said "I wished I had had breast cancer because then I could have just had surgery."
Another woman I've known well for several years did not call me for many months while I still was going through treatment. When I had just finished active treatment, she called to ask point-blank if I was now "cancer-free." After my politely dodging the question she asked "Well, what did the doctor say?" Dodged that one, too. She immediately replied she was busy and had to go. Haven't heard from her since.
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The other night I was meeting a friend and a group of her friends that I don't know to celebrate her 55th Bday. In this case no one in this group except my friend knows that I have stage iv breast cancer. So I arrived to the restaurant a little flustered because I was very late and was the last one to join the table. I was taking my coat off and making my apologies and there was lots of chatter among the 5 women. The woman I sat next to was a very upbeat gregarious person and was suggesting to me that I get a Lychee martini because not only are they delicious but they prevent breast cancer. I was in the middle of settling down in my seat and taking off my scarf as she made this statement in her very bubbly way and I simply replied with a focus on putting my scarf away - "oh well, it's a little late for that..." Without a blink of eye she looked at me with a big smile and the palm of her hand up in the air for a high five and shrieked with glee "oh, you are a survivor!" I smiled at her and responded rather matter of factly "well, I'm stage iv" and I kind of shrugged. She then proceeded to tell me all about her mother who had breast cancer and how she herself had thyroid cancer and on and on and on. I was kind of glad she took off on her stories and didn't get all down and dour about me and didn't ask me anything about my situation. No one else at the table seemed to have heard any of this exchange (it was quite a noisy place) which I was also grateful for. But I was simply struck by how openly and obliviously people can spout out about breast cancer to total strangers and then I was also struck by my own nonchalant reaction. It used to be that people would whisper about such things and there could certainly be no laughter associated with the big C. My how things have changed.
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nine twelve - my answer to those questions - my port will be cremated with my body and I will be able to stop treatments at the same time.
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I could be a bit evil when people tried to tell me what whacko treatment I should be doing to cure my cancer. My response the 2 times it happened was to ask, with a great look of concern on my face, "Oh honey, when were your last MRI and CAT scans? Breast cancer is frighteningly common. Maybe it would be best if you went on an all beet/asparagus/coffee enema diet. You never know what you have lurking in your body."
I too got the "inspirational" story about the local woman who was running road races, cooking amazing meals from scratch for her kids, never missed a day of work and always looked perfectly put together while being treated for BC. I wanted to strangle the "helpful" woman offering to connect me with this paragon of virtue. My private fantasy was that I'd meet the BC idol at some event and she'd tell me it was all bullshit-that she'd spent a full 9 months dragging ass like the majority of us.
On a personal note, I'm over 5 years out from my first diagnosis and 2 from my second and other than the SE's from Exemestane I'm pretty much back to normal, but... both of my parents and my husband have recently been diagnosed with different cancers so that old anxiety has crept back in and BC.org is helping to keep me sane and giving me a place to vent. Thank you ladies and gentlemen for creating a great community! My husband, who most people don't know has Stage 3 melanoma, has gotten a few "dumbest thing" comments, including the ever-lovely "I know someone who had the same cancer. Let me tell you about their horrible death..." Ugh.
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Oh hahahaha! NativeMaine, perfect comeback.....
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I am currently being bombarded with the "radiation is easier than chemo" chant. Really? They don't know how disappointed I am about not to going into reconstruction for months. I think I like the RO, but I am just barely to the point I can discuss my radiation, ovary removal, and LD rebuild. Everyone wants to know about the date of the last Chemo because then it is "over".
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When I told a dear family friend about being diagnosed with IBC, the FIRST thing she said was, "That is the cancer my niece died from." Gee, thanks.
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Mexico,
Somehow I think people hear the chemo horror stories and not the radiation horror stories. Radiation wiped me out, even though I kept going to work, I can't really remember what it was like. Everything about me was fried.
I'm sick of female acquaintances offering me their belly fat so that I can get bigger boobs when I have DIEP Flap surgery next month.
Meadow, sorry for the insensitivity of your old friend. You can look back on that comment 20 years from now with a smirk on your beautiful face!
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Thank you Falconer, your post made me smile!
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Radiation is not easy. Sorry to whoever says that. Maybe it's easier than chemo, not having had chemo I guess I can't really say with any authority. But radiation sucked, a LOT.
Stupid things people have said to me:
"oh honey, you'll be fine, no one dies from breast cancer anymore."
"well, at least it's not completely devastating." ??????!!!!!!!!!!
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And that's the reason why I took the risk and refused radiation. I went into a compromise with my BOS, if the ALND would show no positive nodes I wouldn't have radiation. I explained to him that I see no reason why I would get radiation in a spot where there were no more lymph nodes as I had no LV invasion. He first threw a few tantrums but when I didn't budge he accepted it.
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seachain--GOOD FOR YOU!!!
MexicoHeather--you can always tell your "friends" my horror story about radiation damage forcing me to have a mastectomy because the "saved" breast was rotting from the inside out, and how I now have lung damage and have been told to expect heart damage to show up any year now, both of which are COMMON long term side effects of radiation treatment. And don't forget to tell them about the need to be monitored for the rest of our lives for secondary cancers caused by the radiation treatment.
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I think a lot of people don't get the concept of the circles (people in the inner circles can dump to those in the outer circles, but not the other way around.) They seem to think it's comforting to give advice or offer platitudes like "radiation is easier than chemo."
I said a lot of things to make myself feel better during treatment. "At least it's not a body part I can't do without." "Being bald isn't so bad!" "Now that treatment's ending I can start to put this in the rear view mirror." If anyone else had said any of these things to me I would have wanted to kick them in the teeth.
Everyone's experience in dealing with this monster is different and hearing something like "at least it's not stage 4" or "at least they caught it early" or "your type isn't the worst type" first of all may not even be true, but even if it is it minimizes the emotional toll battling cancer takes. No one wants to be told how to feel about their own disease or to be told that at least their crappy situation isn't as crappy as that of someone else.
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Hey there:
When I was dx with BC second time, I told my boss and HR person I am taking short term disability for treatment. My boss was compassionate, but did want me to continue working and staff would "support" me and the HR person flat out said, "what stage is it? A woman who used to work here was diagnosed with BC and she came back to work 3 days after surgery and worked right through her chemo. She's fine now. No one dies from BC anymore. I think you just want time off from work and I doubt insurance will approve your request and even if they do, they start payments a month after you start short term disability."
I of course was upset by this attitude. Incidentally, the insurance company immediately approved my request and there was no delay in any payments from day one. They approved the time off until at least June 4 (from Feb 1) and will extend if needed. The HR woman was out of line.
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That HR woman was most definitely out of line. Have you considered reporting what she said?
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Absolutely report her. Everybody has a boss....let them deal with her and her bad job skills.
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Hey ladies:
Maybe I will report her.
Its just a stupid thing and attitude someone had.
It does surprise me some of things people think and say about BC. They can be so insensitive.
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Not only is what she said insensitive, it may also be a violation of ADA regulations. Cancer is a disability under the ADA.
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Hi NativeMainer:
You are right. After I had this discussion with HR, (she also said that I would likely be let go when I returned if I was not up to the standard of work right away), I went to a lawyer and asked her my options if I am let go and the lawyer said she did violate the law and I need to document everything. She then said it will be a fight in court likely for any increase in severance pay if I am let go and may not be worth the stress and expense.
So... since my short term disability came thru and I am facing the stress of treatment and all that entails, I am waiting until I return to work to address this more. I am too tired right now.
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Wallan--I can understand not pursuing the issue right now. I'm glad you talked to a lawyer, Always best to know all your options.
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Bumping this thread with some recent gems said to me (and have been said to others here):
- "But you'll get great fake boobs for free!" (Breast reconstruction is NOT cosmetic breast surgery!!!)
- "I thought you were done with chemo, though- why are you still sick?" (Said upon seeing that I'm still shedding hair, having side effects, and have an abysmally low blood count)
- "Well, you look great! You'll get it all back." (Said after I told a friend that I didn't really want to talk about new cosmetics and beauty products- despite being a former cosmetics enthusiast- because I haven't tried anything lately given that treatment has taken away my hair, lashes, brows, and scarred my nice skin! And scars notwithstanding, it's not guaranteed that all my hair comes back, and even then... it'll take years upon years to grow the length.)
The last point reminded me that I need to try to move past the comments that upset me when people try to lift my spirits. No matter how many times someone says, "You look great!", I get angry because it's couched with an unsaid, "For someone who's going through (or been through) cancer treatment".
I realized that what I REALLY crave to hear is, "You look like you never had cancer!" And I know that's impossible given how treatment has permanently scarred and altered my appearance.
I know this is what people refer to as adjusting to the "new normal", but the patience and acceptance required for the "new normal" is an unpleasant, long road fraught with concerns about recurrence.
Rant off.
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burner I'd like to give u a big hug, if that would help. I know, we'll never look like we didn't have cancer, but we'll look better again.
I don't mind when someone tells me I look great...I choose to believe I really do look great! (Empirical evidence notwithstanding) What makes me mad is when someone asks how I'm doing, and then after I answer, says "well remember it could have been much worse". Yes of course it could be worse. But u asked how I was doing. If u don't want to know, then just don't ask. But don't ask and then imply I shouldn't complain.
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Thanks, Herculesmulligan!! Yes, this community and your big hug do help. Ranting and journaling help- and knowing that there are so many great ladies that unfortunately go through this process with me helps.
I do have my good days, but those self-confident days are few and far between at this point. I know it'll get better, thank goodness!
I can relate on how you get mad about people who don't really want to talk through how you're doing/feeling - they just want to feel good about themselves, trying to help make you feel gratitude. The sentiment comes from a good place, but it diminishes the loss we are feeling and ignores the whole "quality of life" considerations that we consider. A big hug back to you!!
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Burner--adjusting to the "new normal" is anything but a normal experience. Frankly, that is an oxymoron. Something can't be "normal" and "new" at the same time.
Hercules--I cannot stand it when someone who has never had bc tells me how I should be feeling/acting/looking/coping/reacting/whatever. When you've been through what I've been through, THEN you can tell me how to feel.
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I changed territories with my job for several reasons, no one here knows about my bc unless I tell them. I love getting the reaction 'I would never have known'! It has been three yeears, my hair is thinner but it is to my shoulders, they think this is my normal. In the past sometimes when people would bring up the better boob thing I would tell them 'Yeah but the Meds I am on have given me the hoohaw of an 80yo.', then apologize for the TMI.
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Chico- thanks for making me chuckle- any mention of your hoohaw to anyone else is not TMI- they were asking for it.
I'm here to rant because my friend had a breast lift two weeks before my unilateral DIEP Flap and she called to give me advice. She meant well, but she has no clue that my burnt up, nipple less, tissue expander filled skin that would be replaced with fat from my belly was nothing at all like her cosmetic surgery. And after when she called to check on me and was still complaining about how much pain she was in, I reminded her that before I was Dx with bc I really liked my perky B cup boobs and wouldn't have traded them for anything and instead I'm forced into this game of pretend that i didn't want. Grrrrrr.0 -
Lots of folks mean well and have no idea the impact of their words. One friend, who had a similar diagnosis and treatment protocol to mine 12 years ago, keeps telling me how easy it was for her. Well, maybe it was. Or maybe she's remembering it differently. But her journey has nothing to do with mine (for one thing, we're the same age so she was that much younger when she went through it). It does seem the best thing to do is grit your teeth, smile and say "just fine" when people ask how you are. I let my guard down at church this morning and was honest with folks. They looked shocked! Well, I'm not feeling that great. I'm sore. I'm exhausted. I want this unasked-for adventure to be over. At the same time, I recognize that my adventure pales in comparison to that of many of you here on this thread. I know, however, that you empathize with me as I do with you!
Here's to a good week ahead.
MJ
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