Lets do a Sh*t People say to Metastatic BC Patients
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Nkb: "my MO said it wasn't true" Ha! I love it.
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oh the anti perspirant has been around a long time. I remember it from the 80s and 90s. Theory was that stopping sweat allowed 'toxins' to build up and trigger cancer.
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The concern with anti perspirants was (is) the aluminum salts. There was some research done but no definitive evidence that it’s a direct cause for breast cancer.
https://www.healthline.com/health/what-to-know-about-aluminum-in-deodorant#health-concerns
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I just saw this thread. There are some doozies out there! I think most of my closer friends and family understand and stay supportive. Strangers often notice my Lymphadema sleeve and sometimes ask what it is. I don't mind educating them. But it gets a little weird when people just stare.
but when they ask if I'm over cancer, I am honest and say no. "It came back as metastatic." That brings out the pity and then how to respond?
I have decided to say, "I am thankful for each new day and try to enjoy it for the gift it is!" I want to add " You should try it!" But, I figured being snarky (which can be fun ) wasn't the best response. 😉
Dee
edited to sayHubby- I’m afraid I have worked all these years to enjoy retirement with you and you will be gone. 😪
Friend from Church- (TNBC survivor of 25 years.) You seem so close to God. I wish I had cancer again and be that close. 😳
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Game night, anyone?
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No pink2019
Too funny. I have heard many of those.
I hate the “at least” phrases. I am learning not to say those two words ever!
Dee
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nopink, the Bingo card really speaks volumes! I will seriously consider saying something like, “Oh, great, now I can check that one off my Bingo card.” the next time I have to hear about kale cures, god’s plan or big pharma’s conspiracy.
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Needs a "just be positive" square....
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Nopink, SO true! There are enough phrases for an entire set of cards!
A BC friend who hikes with me suggested replacements for the "Can I bring you a meal" response to her cancer news.
1. take my dog for a walk
2. give my kids rides
3. housecleaning coupons
4. talk to me (instead of about me)
Those would actually be helpful.
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I write- great idea! Let's start a “what would help" list for care givers and friends.
1. take my dog for a walk
2. give my kids rides
3. housecleaning coupons
4. talk to me (instead of about me)
5. Give me a manicure/pedicure (just a fresh coat of polish would be great)
6. Send me encouraging notes or cards (daily text messages can be overwhelming but cards can be opened as able and displayed)
7. Send an In-home massage therapist
more…..(I don’t mean to take over the subject line. Just liked the positive spin)
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Alabama- your list would make a great new topic.
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Yes, this question would make a great thread. There have been times when "Give my kid a ride to _____" has been at the top of my list, along with "Take my kid with you on your fun family outing since DH and I can't manage that right now."
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Some people say inappropriate comments to us because they are thoughtless, trite, "God's messenger" or they are selling some herbal cure, horse de-wormer, etc. But some are deeply concerned about us and are just not familiar with MBC (lucky them). I think this is a concise explanation of treatments that truly caring friends might welcome. They'd be surprised that as MBC patients, we've heard of, understand, and/or tried many of these.
https://www.goodrx.com/conditions/breast-cancer/types-of-chemo-used-for-breast-cancer
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I’ve received this one twice so far: “Well if it had to happen to someone I know, you’re the strongest person and I’m sure you’ll get through this”….
I mean, thanks? Sigh..
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lehrski, "It looks like you and your cat are in a race to the finish"? My throat clutched when I read that. I recalled when I was first diagnosed with breast cancer, way back in '95, my (female) therapist asked me if I thought it was possible that I had developed breast cancer because I was uncomfortable with my femininity. She seemed to think I wanted to lose a part of myself so I'd be less of a woman. When I challenged her, she said that I might also want to look at my decision not to have children. Needless to say, I found another therapist.
I was diagnosed for the third time in 2009 (mets that time around) and with significant cardiac disease in 2015. After 2015 my oncologist told me that I'd probably die of heart disease instead of breast cancer (my cardiologist disagreed).
A month or so ago, when I had a radiation oncology consult, the RO--after telling me that one of my spine lesions might "blow out" and cause all kinds of nasty stuff--said, "Look at it this way: At least you made it 26 years!"
A member of my family recently told me, "Your spirit has always been strong. I think your spirit can beat this!"
I've thought of this thread often over the years.
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Katyblu, what the hell? There are no words for those people.
Brendatrue, wow, multiple stupid things. Unbelievable.
I love my sister-in-law to pieces. She. calls me multiple times a week to see how I’m doing. The problem is her latest mantra is asking how I’m doing, me telling her I feel like shit on this or that day, and her telling me, “But you sound so good.” Well, yippee. If only I felt as good as I sound.0 -
So much weirdness. and victim blaming.
I can't stand "you have bigger fish to fry" If you complain about anything
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After responding to someone who was asking about me with "Good, but I have lost my hair", I received this: "Your head must be cold."
No, dear. We have hats for warmth. It's more like, when I look in the mirror, I see my own death. But I don't say anything because I don't want to make the whole conversation about me.
Meanwhile, I have two friends with so much anxiety due to pandemic stuff that I have to call or text them every day. I'm sick of being a long distance caretaker!
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Just when you think you've heard it all:
On an Zoom meeting unrelated to cancer, I told the group that I was so happy that I finally found a Stage 4 Zoom meeting.
One of the busybodies said "I'm so jealous" (because she couldn't join). She wants to have her fingers in all the pies!
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I haven't read this thread in years but realized I was steeping myself in too much doom and gloom lately so was glad to find some relief here. I still believe that most people who make questionable comments are not intending to say something questionable. They either don't know what to say or say things based on misinformation or lack of information.
I get weird comments because despite stage IV, I have always looked completely healthy. I was patient with those folks for many years but recently adapted a new strategy. I won't go into each step of it (I detailed it somewhere on bco), but suffice to say it involved slowly exposing each part of my body that bears the marks of bc and it's treatments. The last step involves dropping my pants to reveal radiation tats for rads I received to my femur met. I have never had to go this far, but am perfect willing to should someone push me that far!
I should also add that most folks who are unfamiliar with bc are 100% convinced that my positive attitude is why I am still doing well. I am by nature an optimist and that hasn’t changed much since my dx but it makes me furious to hear it because bc does not care in the least!
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I just edited my former post:
"Just when you think you've heard it all:
On an Zoom meeting unrelated to cancer, I told the group that I was so happy that I finally found a Stage 4 Zoom meeting.
One of the busybodies said "I'm so jealous" (because she couldn't join). She wants to have her fingers in all the pies!"
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Wow, amontro. That takes the cake! Stage 4 is pretty different, imo, from the lesser stages, and it should have a dedicated support group.
Exbrnxgrl, you touched on a lot of the reasons why this disease can feel so lonely. I guess the best we can do is try to figure out whether the person asking us "how are you?" is serious about it, or just being polite. Most of the time, even when it's my own family, I assume politeness. This pandemic just reinforced my natural tendency to assume that people can't follow all my treatments and side effects, or, at least, that there is no one in my life that can do that right now.
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NineTwelve- I do think a lot of it is people don't know what to say- and we all respond differently to what people Do say. I think "how are you?" is mostly a question that wants "good" as the response. people want to be helpful and don't have a clue. it's funny- I noticed while reading that lots of dialog in books has one person saying something important and the other not replying, and the story goes on- in real life that doesn't really seem to happen-
Long ago when my kids were small and I would wonder with my husband if I should say something or stay quiet- and he would say "think about your intentions". I do that often now- am I trying to be right, make them feel bad, elevate myself, be helpful or try to help them feel vindicated, imply told you so etc- if my intentions are not helpful or loving, I try to shut up.
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I love this one "Mother Nature doesn't give you anything you don't need."
I honestly think the person who said this "forgot" my dx, even though it had been discussed several minutes earlier before the discussion progressed to more mundane topics -or- (more likely) just didn't realize the impact of a rather trite statement. I wonder if, later that day, he face palmed and thought to himself, "WTH did I say?!" (As we have probably all done at some point.) Still. SMH.
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I see a post above about a radiation oncologist making a flippant remark. I’m starting to think ROs don’t have good people skills, based on some comments I’ve seen here and my own experience. Maybe they don’t spend as much time with patients as MOs and surgeons do..or maybe you have to have a certain personality type to go into nuclear medicine.
The memorable interaction with my RO went like this -
Me - so radiation to the spine, is it risky since we are close to thespinal cord?
Him - well, I haven’t paralyzed anybody yet!
He did follow up with an explanation of how he would minimize risk, to his credit, but good thing Im a tough broad with my own weird sense of humor. Because wow.
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Olma61- I think you are on to something. the first RO I had 10 years ago told me not to bother with radiation to chest wall and nodes (I didn't have clear borders and had tons of + nodes) he said I wouldn't live long enough for the side effects of the radiation to be worth doing it. he's retired and I am still alive.
these comments are life changing and not helpful. I did call him on it later though.
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Nkb, I love what your husband said, "think about your intentions". I tend to speak my mind and sometimes later regret doing so. Questioning my intention will be a great addition to my current mantra (shut up, just shut the f up) in limiting any verbal D.
I have only had limited interaction with ro's, but I agree, they are a strange breed. Maybe they need a little more training to improve those people skills.
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While reading about radiation oncologists above, I am reminded how rude mine were way back in 2008. I wouldn't stand for that attitude today.
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So sorry your ROs have been unkind over the years. I feel doubly lucky with mine, who has a really lovely calming effect. She just seems so knowledgeable and engaged.
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To Posters: I went back and read older posts. I cannot believe the things people come up with. At least I am not surrounded people who tell me God wouldn't give me something I cannot handle.
Olma61: why did I think of Dr Death (that show has made me terrified to see a back surgeon) when I saw read what your RO said?
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