The dumbest things people have said to you/about you
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beeline - I got some flak for this before but I’ll say it anyway - if it’s a good friend, I’d say something. Kindly, but I’d say it. Just a explanation that it was a devastating decision to forfeit your breast and also about how the future is no longer a given. I think good friendships grow from that. I’ve had similar conversations with two dear friends who were tremendous supports for me during treatment and both conversations went well and helped them understand my situation a little better. I hope any friend who loves me would explain why a comment I’ve made is hurtful
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that chasm opening up between me and the rest of the world that doesn't have to face Dying Before You Figured You Would.
I have it WAAAY easier than what you've been through but still feel this chasm, especially due to being 35 when it all went down, everyone I know only knows so and so's mom having breast cancer. I feel launched into middle age too soon, "my time is passed" before I knew it could be. Most people are so oblivious...... I still have a cloud of doom over me which nobody I know understands. My mom went through this too but is more like robot that kept on trucking.
When I needed to have a biopsy on a swollen node my friend was like "I don't know what you've been doing in your daily life..." as if it was due to my behavior. He tried texted me "It's environmental factors, and you have a genetic sensitivity that is being predated upon, not that you aw shucks got cancer. There is something you are all getting exposed to and you probably have NO idea what mundane thing it could be. You're an animal, you are a system that has survived across time, clearly some new environmental factor is hitting your line." LOL riiiiiight. People have a hard time realizing that 1) a lot of things happen for no reason that don't make sense 2) the universe doesn't care about you 3) the control you have on things is quite limited.
People also don't understand why I don't want to go out as much. I don't want to waste any more time on bland things or boring conversation etc. Yet here I am sitting at home on a computer screens. This experience didn't make me run out and chase my dreams. My life as always been slow... I think I need a lot of time for it to unfold, OR I will die prematurely and be a waste. I wish this would inspired me to be a bit more active. I try sometimes but then fall back into my natural daydreaming pace.
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And think of it this way: for our friends to TRULY understand, they would have to get cancer! And we would never wish this on anyone, let alone a dear friend!
Honestly, I do not feel the chasm. I do not feel divided from others. Maybe it's because I lost a brother when I was 19 and he was 18. I feel like my last 40 years have been, in a way, gravy.
I feel like well, I got cancer; other people have a child with autism, a physical disability, a cruel parent, a "me too" experience, a cheating spouse, a mental illness, a stillbirth. We are not really divided from everyone else, because (as my therapist said) who doesn't have trauma? Even people we feel have perfect lives... their pain is hidden from us (as ours is hidden from them). We are all in the same boat of impermanence and risk-- so we are really all in this together.
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It's different.....
Cancer is your own body turning against you, at random, on a microscopic level. Sure, there are things we can do to be "healthy" and "prevent" it but really, not that much. And even if you get your treatment etc.. it can always come back. You don't know when or why... and of course we had to fuck up our bodies. Oh, and maybe have our bodies swell afterwards too.
Not all trauma is created equal (not that it's a competition either). I don't like to diminish what I've been through because other people have had it tough. This reminds me of another dumb thing that someone said to me, my mom, who has also had breast cancer - I was expressing my anger/disappointment/annoyance that this happened to me (at 35) as I periodically vent (which I should be able to do with my own mom who also went through this?) and she reminded me that "well women in their 20s get it too" I'm not very responsive to the "it could have been worse" type talk trying to put things in perspective. 85% of women won't go through this at all.
We all have 'negative' things in our lives that shape us but cancer is more of a mindfuck, and unlike someone who cheated on you etc. the threat is always there. Sure other people experience pain and unfavorable things but breast cancer is a very specific angle that most people can't identify with or even have an accurate portrayal of what it entails due to terrible breast cancer foundation marketing etc.
I've often thought in moments where people don't "get it" that "you won't understand until it happens to you." Of course I don't want that to happen but I never thought of it as a positive thing that people don't understand....(like you mention) instead I just realize how oblivious people are and how many don't really face grim existential thoughts... etc0 -
I do not feel my body turned against me. I love and trust my body... still! Mutations of cells are freak events and happen at random, like a car crash or an umbilical cord around a neck. I spent the whole treatment 'talking' to my good, trusty breast and my immune system, praising them and begging them to fight. I even talked to my cancer and asked it to let my immune system eat it up, and live on as energy in my body rather than kill us both.
Again, I am 57, not 35, and I can really feel the deep unfairness of younger women with this disease. I have a 32 year old daughter and I would be devastated were she to be diagnosed. And I would absolutely HATE to have a menopause 20 years too early. (Indeed, one of the things I put in my "lucky" column is not being 25 or 30 at diagnosis.) So I feel your situation must be a lot more painful, and much more isolating, especially not having peers who can relate. My best friend was diagnosed with stage 4 de novo lung cancer (never smoker), and three other dear friends have had BC. So I am not alone in the cancer boat at my age. My heart goes out to everyone on this board who is young, who has young kids, or who hasn't had kids yet. Or anyone who is alone in this experience.
But I would SO MUCH RATHER have cancer than a dozen other things I can think of. I have a very dear friend with treatment-resistant depression, and I told her I'd rather have cancer than what she deals with every day, and she cried with gratitude, that I actually understood how bad it feels to be clinically depressed.
I have been extremely lucky all my life, and I still feel lucky. I even feel lucky for getting TNBC instead of a hormone-sensitive cancer... from the angle that I don't have to deal with tamoxifen etc. Either I recur and die fairly rapidly, or I live out my life span. I doubt that many people would choose TNBC, but I am ok with it. It would be a giant bummer not to live out my lifespan, and especially not to meet my grandchildren. Being a grandmother is the role I feel I was BORN for. That was the hardest reckoning I had.
But the other day at rads there was a little boy of about 8 or 9, with a tracheotomy tube in his neck. I look at what his mom is experiencing and would NOT trade places with her.
Anyway, I have a friend who is 40 with two tiny kids, and no help. I decided, screw it, I can grandmother her kids RIGHT NOW, in case I don't get to stick around for my bio grandkids. I go there one afternoon a week to help out. I did it all through chemo, and it has been a huge gift to me to sit on the floor with her three year old and draw, or hold her 9 month old while he sleeps.
I think about bestbird, on this forum, who is stage 4, and who has WRITTEN A BOOK on Metastatic BC, and who has self-published it, and has given it for free to over 3,000 people.... THAT is making lemonade from lemons, and it makes me cry, even as I type this! That is beautiful. We can all do something right now to make our lives richer and more meaningful.
We control very little in life, but we do control our own attitude. Whether we get a long life or a short life, the mental wall paper we live inside is our choice... and how we think either helps or punishes US, more than anyone else! I think it's ok to lie down and cry, grieve, scream into a pillow, and feel like shit -- but I do not choose to stay in that mode. I am not judging anyone who has trouble doing this, I am just sharing my perspective, and I realize there is luck involved in this too.
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Hi. Just last week my husband got a new sales rep. Someone who he has never actually met in person and had maybe one or two phone conversations with. This detail is important because I want to stress that they DON'T know each other well.
Anyway, it came up last Friday that he had to cut the conversation short because he needed to leave to pick me up from chemo. This prompted a few (in my mind) obtrusive questions about what kind of cancer I had (again, he's known this woman for, like, a hot minute) and then a bit of a lecture on the "reality" of a triple negative breast cancer prognosis. Apparently this poor woman had recently lost her mother to TNBC after a reoccurrence, and thought my husband should prepare himself for my eventual fate so he wasn't caught off guard by "false optimism".
Needless to say, he's gone from concerned to terrified and I had to talk him off the ledge. I mean, I know she was grieving and probably does not have her edit function fully engaged, but how is telling my husband that I could very well die soon remotely helpful? I can't even wrap my head around what she thought she was doing.
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Fantastic post Santabarbarian. Great clarity in your writing.
Can't always do it but I try to be accepting as best I can.
It's a tough world - and as I believe Richard Attenborough once said, "everyone has their struggle" even if we can't see it.
I wouldn't trade my struggles for anyone elses. They've been designed with me in mind and only I can struggle through them.
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"probably does not have her edit function fully engaged"
I am in love with this wording. It so perfectly captures something that can happen to the best of us.
I'm sorry, that really sucks. It's sad how trauma kind of snowballs itself out into the world
blah, your friend sounds like one of those men who needs to feel like he has the logical explanation for everything figured out, and cannot wrap his mind around his own human 'animal' limitations! You have more patience than I do!
I lost my biological mom pretty young (I was 20), and then I felt a huge chasm between me and my friends. I experienced something almost none of them did, and my life was different on an everyday and permanent basis because of it. I didn't know how to ask for support, and they had no clue how to support me. It was devastating on many levels.
I lost my non-biological mother and was diagnosed with this cancer in the same year - age 38/39 - relatively young for cancer but still adult. It has been like a revelation to experience how different this whole thing is with friends who are also adults. I have friends and friends of friends who have been through various kinds of cancer themselves, and if not cancer, who have dealt with an array of other illnesses - chronic or acute - and disabilities. More have lost parents in the mean time, or at least seen friends lose parents, and have grown in their maturity and empathy and expression. And of course, I have many more friends now who are older than me, as opposed to when I was 20 and most of my friends were in my exact age band, and who have more experience all around. In general, I feel closer to my friends and communities now, and less chasm-y.
Of course there are some who have said dumb stuff. My supervisor at work, when I mentioned I was building up my energy and stamina again after returning to work from a leave for radiation, said something along the lines of, 'oh yeah, it must be like coming back from summer vacation'. Well, she is my supervisor so I smiled and nodded. But. Nope. No. Not really like that. I think a lot of that stuff comes from people's own fears or traumas. She had a cancer scare in the last couple of years, and I think she really needs to believe that cancer is like a bad flu - miserable for a while and then everything goes back to normal.
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"A lot comes from people's fears and traumas" - yes for sure. Once my husband climbed down from the ceiling, he was actually pretty understanding and gracious. His impression of his "friend" is that she is quite young and processing her mother's passing as best she can. He thought she meant well. (Ah, the many hurts caused by those who "mean well" far outpace those done by people who actually wish to do harm.)
We so want to control our environment and fate to the point where we'd rather accept a bad outcome we "caused", than accept that sometimes bad stuff just happens. Because if we "caused" it, we can prevent it, in theory. Smoking, weight gain, hormones, short skirts, whatever. If we can assign fault, we can avoid it.
I'm still a bit mad, though, because someone I love was hurt and scared. I'd be more forgiving if the comment was directed towards me. I just feel like DH is dealing with enough right now without this "help". But as he has gotten over it (mostly), I will too.
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I don't love my body. I grew up with a rare condition and was just diagnosed with yet another thing I should theoretically not have. I was cleaning my grandmother's place...she is in her 90s and is fairly spiritual and I found a peice of paper on which she had written an affirmation which read "Millions of cells operate in my body flawlessly every day," and the only thing I could think was "Well not in mine!"
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WC3 - I can see how that would have hit hard. It highlights the unfairness and randomness of it all.
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kber - good grief what was she thinking? A virtual stranger no less. I’m sorry she lost her mother but that in no way gives her the right to be the grim reaper with your husband. I bet he was shaken by what she predicted and that’s all it is her prediction.
Diane
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Salmandra you bring up an important point - how old/experienced/mature one's peers are is very relevant to whether or not there is a chasm between the afflicted person and everyone else. When my brother died I was 19 and nobody knew how to talk to me. My parents were walking wounded. I was in college on the other side of the country which was (at least) distracting and I could be sort of anonymous and just carry on. My poor sister at 15 had to deal with both my brother's death, AND the fact that my parents essentially closed up shop emotionally while she was still in need of parents. Through a stroke of luck I got a mature, kind boyfriend about a year later who was very patient with my grief. He simply stroked my back while I cried. Dozens of times. I will never forget that.
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Santabarbarian, yours are among my favorite posts on a variety of forum topics. I haven't liked my body for many years. Indeed, I often find it a major pain in the arse (literally!) when my mind and spirit want to do, go, see and just BE more, but I always find your perspective interesting. Thanks for sharing.
Lyn
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Just got back from my dental appointment. I had to tell the hygienist about my diagnosis for their records. From there it was a very interesting conversation. Among the gems:
"If you are going to get any cancer that's the one to get." - What does that mean? Nobody wants ANY cancer. They all have risks and cause changes to your life somehow.
"Nobody dies of breast cancer any more." - Sadly, yes women and men die of breast cancer &/or treatments.
"One woman I know had both her breasts removed, nipples too. She had reconstruction and they tattooed on nipples. She looks better now than she did before." - Really? After all that radical surgery for cancer she looks better now?
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"No one dies of breast cancer, anymore." Ah, if only that were true.
This week at work I had to explain to a project team that I'm on that, no, I will NOT be delaying my surgery post chemo to accommodate the project plan, as it has been clinically shown that delaying surgery for more than 60 days is associated with statistically significant poorer long term survival outcomes (yes I used those words) and would increase my chances of dying before my daughter graduates from high school by up to 5% (yes I used those words, too).
They got the point!
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Way to be blunt and bad assed!!
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Thanks! My employment situation is one thing I'll definitely be reevaluating once I'm done with treatment. We are very bad at respecting personal boundaries and "work life balance" is for sissies and losers. We pride ourselves on the late nights and long weekends necessary to just keep up with an insane and unrealistic expectations.
I think I'll look for something a bit more humane and less testosterone toxic! I'm not some 20 year old kid - I don't need to prove myself to these myopic and overworked ninnies anymore!
When I list the positives, or silver linings, of cancer, achieving the perspective to put my career in its proper place vis a vie my life and my family definitely makes the top 5!
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Yeah, the dental hygienist. I had to mention bc and treatment as it related to my oral health. She got a big excited smile and gushed, "Oh you're a survivor! Congratulations!" Umm...thanks? For heaven's sake, it's not some acheivement or prize I won. I blame the pink balloon people.
Kber, right on! (Did I just say "right on"? I'm not even that old...)
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kber, I figured out long ago that if the place I work doesn't save lives, there is no reason for crazy hours and expectations. It helped that one of my first adult jobs was in an actual hospital. After that, I wound up in a horrible situation where the company I worked for thought they owned the employees - I worked 6 or 7 days a week, 10 to 12 hours a day,. I wasn't allowed to schedule vacation; they'd tell me on a Friday "You're on vacation next week" so I couldn't make plans. If anyone worked enough hours for overtime pay, they'd get reclassified as "manager trainee" and put on a low salary. So once I escaped that, I worked for cultural non-profits - no money-grubbing, and no delusions of life & death importance!
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oh God, "There are other disfigured people out there", gee thanks, Dad!
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CreatureKeeper--SMH.
Kber--good for you! Nothing like bald facts to open people's eyes.
ShetlandPony--"Congrats, you're a survivor" is lot like "Congrats, you paid your taxes, You're a good citizen"
AliceBastable--WELL SAID!
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CreatureKeeper - “No one does of breast cancer anymore.” You might suggest she tell that to the families of the nearly 41K women who died of breast cancer last year alone. And how, exactly, is this the cancer to get? I had cervical cancer and there was a surgical cure that was not disfiguring and no chemo was required. That’s a better cancer to get. Or, even better, basal cell skin cancer that can be removed in an office. Jeez. All three of the statements you heard would have made me livid.
Kber - Nicely done. I favor realistic bluntness, too. And also reassessing my work life I made the decision this week to cut back to four days a week. I realized that if I die early, I wouldn’t be happy that I had focused on working as much as possible
A neighbor the other day saw me working in the yard and said, “We hadn’t seen you out much.” I said, “I hadn’t been well much.” Then he asked if my prognosis was good!
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The few people who have asked about my prognosis have more stated thank asked. "But your prognosis is good, right?"
If I don't know them well, I nod and smile and say "I certainly hope so!"
Come to think of it, no one really close has asked, although I know my mom and sister both looked it up. (My Mom has become a champion researcher, but only shares the good news that she finds with me. She's trying to keep me positive while, frankly, driving herself crazy."
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Don't you just hate that cheery/hopeful "your prognosis is good, right?" or "so...it's all gone?" or "you're cured right?" My general answer - slightly snarky, yes, but effective - is "I'll let you know on my deathbed." It shocks, but reminds them of reality. I am well aware that IDC can certainly come back any time in my life (who knows, there could be a cell out there somewhere doing its dirty work. I also know that my highest risk of recurrence comes after the 3 year mark and I'm only approaching year 1.
I always say I'm not pessimistic, just realistic and grounded in facts; I also focus - happily and positively - on today/now/the moment.
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I had another neighbor who said, “But you’re doing everything you can - you’re not going to let this beat you, are you?” I laughed and said, “Well, that would be my preference, but who knows?
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HI PatsyKB: My diagnosis is the same as yours and I have not heard that my risk for recuis higher after 3 years. Just wondering where you heard this.
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My general responses to "You're going to beat this?" Or "But your prognosis is good, right"? or similar...
"That's the plan!"
"If I have anything to say about it."
"I certainly hope so!"
"God willing and the creek don't rise" (When I'm being especially snarky and feeling my mid-west roots)
Look, I don't want to die just yet, but I can't in good conscience promise I'm going to make it and I'm not going to lie just to make you feel better.
Unless it is to my 13 year old daughter. Then yes, I have lied to make her feel better and promise I'll be ok. But if you aren't my child, I just don't have the capacity to care for your emotions just right this second. It's not my turn to be the strong one today.
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goldfish - glad you responded because I went looking for my source and can't find it; maybe i misinterpreted something? I'll keep looking because I was sure that my early risk of distant recurrence was lower than later on, after 3 years. But, as I always say, I COULD be wrong!
I have read that prognosis for ER+/PR-/HER2- is similar to Triple-Negative.
If anyone can enlighten me as to the early and late risks of distant recurrence for Single Receptor ER+/PR-/HER2- IDC, I'd appreciate feedback.
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