The dumbest things people have said to you/about you
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I'd rather have misplaced positivity than predictions of doom. When I had endometrial cancer, all I told my Mom was that I needed a hysterectomy for bleeding problems. Her mother had died from uterine cancer back in the 1930s, and although I know it must have been a traumatic time for Mom as a teenager, she had a bad habit of reciting the whole sad story in unchanging words at the least opportunity. She was kind of like the old grandmother in Cold Comfort Farm who always told the same damn story over and over. So I didn't tell my Mom before the surgery, and as we pulled out of her driveway at the last visit before my surgery, she screeched from the porch, "YOU'RE LUCKY IT'S NOT CANCER!!! MY MOTHER DIED FROM THAT!!!" I'm sure everyone in her neighborhood was fascinated. So, at our first visit after the surgery, I finally told her, and sure enough, she said, "That's what my mother died from" and went on to talk about that whole experience. She forgot to ask how I was doing. 😡 So, I finally asked her if I should apologize for having survived. It worked and she got the point!
It was an odd but annoying trait in a woman who otherwise had a great sense of humor and was a lot of fun.
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AliceB, you say you'd rather have misplaced positivity than predictions of doom. As if these are the only choices we have. They aren't. And refusing one (no pointless positivity) does NOT mean that you have to accept the other, predictions of doom. There is a middle ground to aim for, a balanced view. At least to my way of thinking. (by the way, this is not an attack on you in any way, but wrestling with an idea)
I am not a fan of pointless positivity. It slips too often, for my taste, into denial. Which I admit is a warm, comfy bath to float in. Who wants to admit there are sharks in the tub with you? Who wants to admit that gnawing feeling in your ass might be a shark sinking his teeth into you again? He bit you once while you were minding your own business, and yes, you took out your baseball bat and whalloped the sucker a good one, got a few scars to show for your efforts. Is he gone? Maybe. Will he stay gone? Maybe. Will he come back? Maybe. If he comes back will he take another bite out of your backside? Maybe. Will he kill you? Maybe. Some try to obliterate all these unknowns with pointless positivity. They are trying to make their positive words and positive affirmations and positive wishes build a great, big force field around them that keeps all sharks out of the tub. They have to believe that they can create this net of safety with the force of their mind. They MUST believe this, because believing anything else is just too damn terrifying. Looking into the water and realizing that whatever roils up out of the depths is out of your control, is a permanently unsettling and rattling realization. Some people just cannot cope with that truth. So they say it ain't so and call themselves positive.
Now, an optimistic world view IS NOT the same as pointless positivity. An optimistic world view says, "well, yes, I had cancer, and it might come back and I think about that alot. So I give it 10 minutes every morning and then, with deliberate force, shove it to the back of my mind so that I can function with a clear vision of how I want this day, week, month to go. I KNOW I am in jeopardy every day of my life but I'm not letting it stop me from living. I am moving forward despite the very scary reality that I can't un-know. " THAT is the way it should be done. Fortitude. Forward moving. Admitting there might be a shark in the tub and conducting your life as best you can in spite of it! Tally-ho! Bravo! (Lita and her cooking and wicked humour come to mind!)
Pointless positivity are the people who say they never think about cancer because they just made up their minds to be well. Yes they did. They just focus on the good and now everything is peachy keen, yes it is. You just need to see the glass as half full and the cancer is gonegonegone and I am going to be finefinefine and if I say it often enough with enough conviction, then it will be true. True, damnit! Magic thinking. If wishes were horses, beggars would ride.
Admitting that the shark in the tub might come back to bite your ass is NOT a prediction of doom. It is a statement or truth. Now, the pointlessly positive and the optimistic are still both in the tub, with the same chances of being bitten again. So what is the difference between optimistic and pointlessly positive? To recognize an incoming problem you must know what that problem looks like, know that its arrival is a possibility and be prepared. Stay in the tub, enjoy the bubbles but keep one eye peeled for that fin breaking the surface and maybe you can mash that sucker flat or at the very least not be taken by total surprise. The Pointlessly Positive, if bitten a second time will holler in outraged disbelief that their magic force field failed and will splash around instead of having their weapons at the ready and a battle plan in place. I think being Pointlessly Positive leaves you vulnerable and exposed where being optimistic means you have looked at the reality, put on your big girl panties and are living your best life anyway. Living a good life knowing that there are sharks in the water is not negative. It is not declaring doom. It is being wise to the truth and moving forward anyway.
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Alice, please please get genetic testing for Lynch syndrome mutations.
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Alice, I very much related to your post.
My mother is much the same way-a very selective listener who quite often makes inappropriate or hurtful comments. As an adult I have functioned as my mother’s medical advocate, translating for her and asking the questions she is incapable of asking.
But I have learned through experience that my mother is unable to offer similar support. So with my breast cancer I had to leave out most of the detail, and basically blocked her from updates as I moved through my treatment phases.
Was it disappointing? Sure was. Was it hurtful? At times, very much so. But I knew in my heart that she really did not want to know. Because she has no way to turn information into positive action. It is what it is.
But I was fortunate in that I had long standing friends who I could speak with and who listened to me with a supportive attitude. And an outstanding medical team who individually and collectively uplifted me from day one, and still do.
So I did get what I needed.
Thankfully you sound like a strong person, and made it through some big medical challenges. You have my respect. Continued strength to you
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I don't want reflexive negativity OR mindless positivity. I certainly have had plenty of people who feel compelled to tell me about women in their lives who died from breast cancer as soon as they hear my diagnosis. That's unnecessary. But I am even more bothered by the idea that we can control the outcome just by being positive. I think that's bullshit. And I think it's blaming the victim disguised as support. Often well-meant, but still not helpful. It's most helpful when someone is struggling with something difficult to just acknowledge the difficulty of it. And to acknowledge that you DON'T know what it's like to experience that. When someone has been through something that I haven't, that's what I do. Say, the loss of a child. I have had a miscarriage, but I know that in no way compares to having a child die. So when I encounter someone who has lost a child, I tell them I'm so sorry. I say I can't imagine how difficult that is. Or for something where the outcome is unknown, it's important just to acknowledge that it's scary.Years ago, my son had to have an MRI because of some neurological problems he was having. I found it maddening that people would tell me that it was going to be fine and the scans would be clean. Turns out, he needed brain surgery. All the prayers and positivity on the world weren't gong to change that. So, when someone tells me I'm going to be fine, that the cancer is gone, that everything is peachy, I want to yell, “You have no fucking way of knowing that." I opted for a serious treatment approach and am living my life now in the best way I know how to better my odds, but I'm smart enough to understand the stats on this and to know the aggressiveness of my particular cancer. I'm actually a pretty optimistic person in general, but I'm also a realist. I don't think there's anything wrong with living with your eyes open.
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runor and wanderweg -
I agree with you. There is that old saying that optimists build airplanes and pessimists build parachutes. I would say realists built parachutes and that as a person with ac you can metaphorically build both airplanes and parachutes. One writer on breast cancer asked that people trying to be supportive of women with bc deliver us from the "tyranny of positivity ". I love that phrase. Polly
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Wanderweg, I read. I stood. I cheered. Yes. YES!
Polly413 , tyranny of positivity - perfect.
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I think people tend to repeat themselves if they think their point is not taken or ignored. I simply say I am aware and taking a warning into consideration otherwise ignoring it will not help.
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Traumatic events definitely cause repetition. It's a hallmark of trauma to tell the same story over and over.
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I thin that we also have to ponder a little bit on the mindset and emotions of the people who love us - be they family or friends. They are also terrified that they might lose us, and the positive thinking reinforcing is not directed at us, but it's their way to cope with the situation. It's been discussed many times over how all this affects the ones who love us. True, we can't compare as they aren't the ones going through what we're going through, but on the other hand, it's not good for our own emotional well-being to dismiss the feelings of the ones who love us. As they don't know what we're going through, we don't know what they're going through either. We can't demand love, compassion and understanding all the time, without being willing to give some of the same back.
I had good friends tell me many times this kind of over-positive stuff, and in most cases it wasn't that they didn't understand that I'm never going to be considered cured, or that they were just saying stuff for the sake of saying something - it was because that was what their hope was, and that is how they were trying to cope. People have different pain tolerance levels, be that pain physical or emotional. What we might go through barely giving a thought, might bring others on the brink of a precipice. Compassion has to work both ways.
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Yes, I agree I think people are trying to help not annoy. But it is very good to rant a bit on these boards helps relieve frustration.
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Seachain, yes, well said! I've been in both positions and both are terrifying in different ways. Yes, there are people who do get it. Yes, we must do what we need to do to protect and care for ourselves. But you are right, our lived ones, friends, caregivers, they are hurting too.
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Recommendation for friends and family:
There Is No Good Card for This: What To Say and Do When Life Is Scary, Awful, and Unfair to People You Love
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ShetlandPony, I met with a genetic counselor last week and we're waiting for insurance approval. I got a letter the other day saying they only pay for Braca 1&2, but then got another letter today authorizing a list of categories, so the councelor may have called them on my behalf. I'll call her Monday to see where my tube of spit is in the chain. 😊
For the others, back to people's reactions and related topics - I like to vent here occasionally, and I also like to see the humorous side of people's cluelessness. Do people irritate me sometimes? Hell yes. But they also irritated me when I didn't have cancer; I just didn't have a safe place to let off steam then. But I'm damned if I'll play Camille when I've never had to have chemo and have no ongoing bad side effects from cancer. I have Stage 4 friends (other cancers) who still find joy in life and keep functioning as best they can.
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runor - Thank you.
As it happened, that particular friend made another comment about it having been a nine-month adventure and me being on the other side of it and done now, so we talked. I told her (gently) what the situation was for me and she listened and understood. Which I think is the kind of genuineness you want in a healthy relationship.
Alice - I don't know who Camille is and I wouldn't dream of comparing my situation to having stage IV. But I did have chemo and do have ongoing effects, so I feel okay about talking about how cancer continues to be part of my life. I don't even see it as venting, just processing. I believe you can talk about difficult or upsetting things and still find joy in life. If anything, I am more focused now on enjoying life while I have it.
ksusan - Thanks for the book recommendation.
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wanderweg
I am glad you had a good talk with your friend. Much better to try to spread understanding than to feel bad around a good friend who is fond of you and speaks the wrong thing out of ignorance.
I also agree with you that talking about our cancer experiences if done in a non dramatic, non tragic way is healthy no matter what we have gone through or not gone through during treatment. I always felt that if I put on a pseudo brave front and denied any side effects to people who had not had cancer then if they got cancer or another friend of theirs did, they would think there is something wrong with me or my friend because Polly just sailed through it. I try to be honest. I did kind of sail through chemo but then am having some problems on letrozole. When someone posts that they are going through a lot of stress and worry about their cancer, I don't care if they are Stage I, Grade 1, neg node and half a centimeter tumor, I think they have a right to speak up and find support here. Here's the truth, even if we start with DCIS, we can end up even decades later with mets and be Stage IV. This is the reality of breast cancer. There is no cure. So we may live to be old ladies and die of something else but not one person of this board can rely on that. Just my two cents. Polly
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polly - Amen to that. I just read “When Breath Becomes Air,” a memoir by a neurosurgeon who dies at 38 oflung cancer. About the stats/prognoses he says, "Could we divide the curve into existential sections, from 'defeated' to 'pessimistic' to 'realistic' to 'hopeful' to 'delusional'? Weren't the numbers just the numbers? Had we all just given into the 'hope' that every patient was above average?" Statistically speaking, someof us will have mets and some of us won’t make it No matter what our initial situation is.
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good thoughts shared here by all.
It speaks to the respect and genuine concern of all here. I can’t think of many places/situations where I can express myself and get honest and sincere input. Says a lot about the quality of this community
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This isn’t the dumbest thing anyone has said to me, but I haven’t been able to shake it so I thought maybe sharing here would help. Last week a friend of mine was asking about treatment details. She has been a huge practical support, picking up my kids, dropping off meals, etc. She asked about my mastectomy and said, you had both off, right? And I said, no, just the one. I’m just small so it’s not very noticeable. She laughed and said, oh you would notice if one of my breasts was removed. Like this was some great joke, or somehow it was less of a loss because my breast was small to begin with. I was so surprised I didn’t say anything at the time, but here I am 5 days later still thinking about it and feeling bad. I know she didn’t mean anything, she has been a great help but just doesn’t understand. And I’m usually quite up for self-deprecating humour, but this didn’t feel like that.
Of course what she doesn’t know is that I go to great effort to make it not noticeable that I am missing a breast. That 8 months out I still have swelling and discomfort that means I can’t wear a bra with a prosthetic. That losing it was a shit option but my only one, but I did it because I want to live. Later in the evening we were talking about my MIL who is 79, and my friend said, “that will be us,” as in old grandmothers should our kids have kids. I didn’t say, I hope so! Because honestly I don’t really dare to hope that I will live to 79 and see my daughters have their own children. I don’t know if I’ll get to see them graduate from high school, though that is my goal. But I definitely don’t take any length of time for granted. How do you relay that in a social setting and not kill everyone else’s good time? Probably you don’t. Anyway, I didn’t.
Thanks for listening.
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beeline, what she said was inexcusable. Stupid really. I haven't had anyone say anything other than a coworker who was suprised I was still "Ok", aka cancer free.
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I think you let it go. You said she was so helpful with picking up your children and bringing meals. That’s what a friend does. I’m sure she didn’t mean anything by the comment. If you told her you were offended I’m sure she would say she didn’t mean to hurt your feelings. I had a so called friend/neighbor tell me she didn’t bring any food over because my husband cooked.
Diane
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beeline - reading it, I took it as a bit of jealousy. That if it had been her there was no way she could’ve disguised the fact and likely would wish she could. Perhaps too she wishes she was smaller overall and you are. We always want what we don’t have until sometimes we get it and see the other side.
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Beeline, I think you realize this is a solid person, who has put her money where her mouth is, come through for you in many real ways, and made a bad step. God knows I struggle with saying the right thing. I think you are raw, sore, scared, your world was knocked off its axis and your ability to let things roll off has been stretched to the limit. I truly believe your friend meant no harm. Her actions must speak louder than her words and her actions have been solid. But still ... I know what you mean.
The next part of your post made my arms break out in goose bumps. Planning for the future. I have not been able to imagine a future since March 2017. I get on with my life and am doing better all the time, mentally. I have days when I don't think about cancer constantly. But I had lots and lots of days when I could think of nothing else. It was a taste in my mouth I couldn't get rid of, it flavoured every single facet of my life. Cancer. Or, Dying Before You Figured You Would. It is a unique and indescribable moment when you listen to your friends talk about the future and you look at them as if they are an alien species and you can no longer remember what it was like when you too looked far into the distance without your viewing being blocked by Big Fat Cancer. It is an isolating feeling. It can leave you feeling excluded from the club of long planning. You are a member of a new club now, a really sucky club, we don't even have a cool handshake or anything, just a pink ribbon and not all of us love that.
Beeline, this is still very new, very raw, very painful and very scary for you. Knowing this please be cautious in your response (if any) to your friend. And know that you are NOT alone in that awful feeling of being excluded from a future. We all know exactly what you mean.
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my dad mentioned on the phone recently that "there are other disfigured people out there." Gee, thanks.
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blah333:
Dad pep talks, lol.
I've got about 5 more health issues on my plate other than cancer, all before the age of 40, despite a "healthy" lifestyle, and the other day when I was telling her about the bad results of a test, my mother asked me, "Why are you so decrepit?!"
But I was glad she recognized it.
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Reminds me of my Mom, when we were still on talking terms. When side effects started hitting all the weak spots I had, and I was slowly getting more disabled, she was like " I don't understand why is this happening to you, all your life you were a vegetarian, ate healthy, were an athlete.. " "Gee, Mom, I don't know, maybe because you smoked and had XRays when you were pregnant with me, I grew up in a house with two smoking adults chainsmoking around me, to name just a few?"
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Thank you meow, edwards, lula. Runor, you have eloquently nailed it, as you so often seem to do. In fact I can’t read your reply without tearing up. You are very right that my friend is one of the good ones, and I know she wouldn’t have said what she did to hurt me. It is just that chasm opening up between me and the rest of the world that doesn’t have to face Dying Before You Figured You Would. It is lonely on this side of it but would be much more so without this community.
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Beeline: I think there is a chasm between us and the rest of the world....but we have this wonderful community of people who know only too well what it feels like to be on the "other side" of the chasm, that we can share our feelings with, this is such a supportive group.
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This one has been bothering me for over a month now. I had my pack o' surgeries last year, plus radiation, and I was finally feeling rested up and over all of it except for the regular exams and scans, just like with any ailment that had been treated successfully. I had a regular appointment with my PCP, and because she was so far out of the loop on what I'd gone through (she hadn't read a single email from the other doctors in all those months until DURING my appointment), she started freaking out and acting like I had CURRENT serious health issues. Dammit, I had those things taken care of! I've been feeling cranky all through February, and I finally realized it was because of that appointment. Why would she see me as still undergoing something that is over and done with? I HAD breast cancer, I HAD kidney cancer, but I don't have them now! I hope I can get her replaced soon, but it's tricky with the HMO I have. I did write her a firm email about not staying current, but I realize that her attitude bothers me even more. It's kind of sad after 25 years with her.
I could have put this in the "steamed" thread, but I'm so flabbergasted at a doctor saying or even implying what she did, just because SHE was late to the information.
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AliceBestable--just shaking my head.
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