The dumbest things people have said to you/about you
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Capecodgirl girl, thank you for the good wishes; I am 2 yrs post rads, & this is my 3rd day of freedom from tamoxifen. Even on low dose, it has worked very effectively in my body, so I'd been struggling w/ its many, many side efx. At the beginning of Nov, had stopped it for 3 mos so I could undergo dermatology patch testing on my safe 1/2 of my back. Patches have to remain dry for the 5 days, so had to stay off tamox until night sweats stopped. During this same time, I started PT for previously injured, stage 4 osteo knees, & shin splints. After 2.5 mos off tamox, the PT said I was a whole 'nother person; therapy became very productive, & therapist had to hold me back! My thinking was clear, getting my words out clearly was back, my costo flared up less easily, my pain level went exponentially down; I felt like there was still a chance to improve my health & have a life again! After 2 wks back on tamox, all the symptoms have resurfaced. After doing even more research on how the blockage of estrogen affects the different organs, yikes, not in good ways, & finally finding the Web tool that gives you your risk assessment for your specific cancer details (I now suspect why every time I asked my med onc for website address, he found excuses for not, right at that moment). When I plugged in my info w/, w/out tamox for 5 yrs, the risk benefit was 1.1 yr lifespan increase! I've already negated that benefit w/ the 20 lbs gained on tamox; I was working on losing weight, suceeding, prior to tamox. I decided to take back as much quality of life as is reasonable for my age, conditions, & LIVE a life, not just barely survive through one. I feel such an uplifting freedom again, w/ no guilt whatsoever!
As for my hub, at the beginning of this journey, I also took the time to research something I had begun to suspect after reading an article by a man w/ Aspberger's, & seeing so much of my spouse in the Aspie character on that series Parenthood. My spouse is almost certainly an undiagnosed Aspie, which means his emotional maturity was stunted, so he's never really had the ability for connecting emotionally w/ others. I learned his annoying, mean, character traits, as well as his funny, eccentric traits, habits-- Aspie thru & thru!
When I was finally able to break thru his many defensive reactive patterns during the course of a 36 hour honest thoughts confrontation, in itself a miracle, coz he'd reached a point yrs before when he'd stated he was just tired of trying to have a close relationship, coz he was tired of the added resonsibility. We'd become surface-friendly roomies, never having any confrontations, but mostly going our own ways. This was the 1st time in yrs there were tears, talking, yelling, etc. When his fog of anger cleared, he was able to tell me for the 1st time in 42 yrs of marriage, that he'd been thinking that his attitude toward me, our marriage, had really been wrong, & he wanted to try harder! He has really, overall, participated in this marriage as a parternership for the 1st time. I so appreciate his help w/ chores, light food shopping, occasionally driving me to drs appts. This has been a real learning experience for him, & he is trying harder than he ever has before.
Right now, he's rather befuddled by how lymphedema is prohibiting other drs from being able to offer intervention to help alleviate my complications from my treatments. Aspies tend to have trouble focusing on reading materials, if it's not about something they are singularly interested in, so he won't try to research it any. He just can't seem to wrap his head around the fact that the lymphedema risk is so strong that it overrides the benefits of active interventions. I need to make a recording of explaining it all to him, so I can just hit "replay". At least he's learning not to repeat his pattern of deciding he knows more than those drs & insisting I should insist on finding dr who'll do it anyway; that was always fun in yrs past! (also an Aspie tendency) Learning that he's not just trying to be a jerk, that these traits are a typical part of his syndrome, have made it so much easier to deal w/ on my part. I can feel amused, or bemused, rather than hurt, or mad. More smiles, ALWAYS a good thing. Hope you & yours frequently have many things to smile about, too. Is this current nor'easter affecting New England? Who knew our whole winter weather would all come at the end of the season!
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3dogs--Hoo boy! Your DH really has a learning curve to deal with. I'm with you on the life is for living and not just surviving.It's so good that you could figure out that your DH has undiagnosed Asperger's. Knowing that must make things much easier for you to deal with.
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3dognite-
Happy to hear your husband is recognizing what you are going through and trying harder. That is what we hope for when we have the "honest thoughts' confrontation.
And good for you recognizing his issues with the aspergers. Hopefully that makes it easier for you to cope when he is struggling with his issues.
You asked me before about the weather in New England- lucky for me I am in Florida right now, so not sure. Have been here for the winter. If I never see snow again it will be too soon. I will be heading back at the end of the week however, so there may still be snow when I get there.
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I feel a little sorry for my family sometimes because depending on whatever mood I'm in on that particular day, things they say may or may not bother me. I felt like crap yesterday after getting my TE's filled and my sister asked if I had big boobs yet. (I've been very flat all my life). It completely annoyed me for her to ask me that. However, today I'm feeling good and peppy so I would've found it funny today and joked back with her. I know my situation is not as bad as others but I feel like my mood fluctuates daily. One day, I'm feeling bad I even have to do any of this and the next day I'm realizing how lucky I am.
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So true Nursepatient, I’m sure my husband and mom feel like they walk on egg shells sometimes. My mom especially, she doesn’t have a great way with words and I think sometimes she just wants to connect with mebut sometimes I get aggravated with what she says and sometimes I can be ok with it. They have both been wonderful so I really try to be patient with them but sometimes I set them straight.
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Previously posted rant: My dear mother-in-law told my husband the reason she has not called me since the weekend after my surgery is because I don't require chemo so my cancer just wasn't that bad and she assumed I was ok since I'm a nurse.... However, my oncologist has requested I see the radiation doc to get his opinion because of the positive lymph nodes. Gosh, maybe I'll need radiation and then my mother-in-law will think this whole cancer thing is real.
Update: Saw the radiation oncologist today, simulation scheduled for April 3rd to be followed by 30 sessions of radiation. Guess who just called me? Yep. Dear mother-in-law. She actually said to me "but I thought you were doing so well? Is he sure you need radiation? Isn't that for cancer?" I was literally speechless.
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Hi Everyone,
One of my co-works told me "Oh you look so good its like nothing ever happened" I asked her if she would like to see a picture of my mastectomy scar she said yes. When she saw the picture her jaw dropped and she stopped talking. A picture is worth 1000 dumbest words.
Sending you all lots of Love and Hugs
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After my diagnosis my sister went and got a mammogram/ultrasound because now thanks to me we have a family history. I’d just had a lumpectomy and was swollen, bruised and decidedly asymmetrical. She told me the technician doing her ultrasound had said how symmetrical her boobs were. Probably not what I needed to hear right at that moment. I deadpanned ,”Well my boobs used to be symmetrical.”
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Nursepatient35--I remember the mood swings very well. Sometimes it was even hard to live with myself in the early part of the treatment roller coaster. I spent a lot of time biting my tongue (sometimes literally) and coming here to vent.
LiMa66--I would have been speechless, too! Perhaps she has some early dementia?
SM627--Great idea!
Katiejane777--I can just hear the silence after your response!
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NativeMaine- nope, she just lacks a filter...doesn't think about what she says before or after she says it. LOL
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Shaking my head.
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I was at a cancer survivor dinner last night. My first as a survivor as I usually am a volunteer server. One lady asked me if I was working and I told her no. She asked why and I told her I was diagnosed in July and was not working this year. I was attending. She said “Congratulations!” Ummmm OoKay. (I looked at my friend as said, congrats on getting cancer?
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That is horrible, misery loves company? My husband picks the very week I am diagnosed to talk to me about cremation. Wow.
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one former friend (we don't talk anymore), when I got the diagnosis I called her, and I told her husband (he answered the phone): I have the results,it is cancer, can i stop by? And he said no we are busy....
two days after we met and the first question from her was: But is it really cancer?? Because we all have cancer...
i said, yes it is really cancer and then she takes me to bathroom and shows me her breast and asks: do i also have cancer??
i don't talk to her any more
one thing i have learned since diagn, i have recognized who is really a good friend and who isn't
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An old man at work broke out into a big smile when he saw me after the few months I was gone and said “ You look like a teenager! I thought you’d come back all hunched over” ( then simulated walking hunched over). But he is a simple man and said he had been praying for me, and meant well, so I smiled and thanked him.
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Valentina, that's appalling, and I too have separated the "wheat from the chaff," the truly caring from the hopelessly self-centered.
chronicpain, LOL, hunched over!
I think some people are just deranged when it comes to any mention of cancer. My phone rings even less than it ever did before my diagnosis -- everyone, except a few, is keeping away from me. I'm actually fine with it, probably needed to do some social "housecleaning" anyway.
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miranda 2060, love the idea of "social housecleaning". I've been backing away from social media as well, I'm finding that since my dx I just struggle with wasting time on the superficial.
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yes I love it too!!!
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I love reading all the posts here...let’s me I’m not alone in suffering the slings and arrows of thoughtless statements. Almost 5 years out now and sometimes wonder if some of the things said to me are just big fat faux pas, that the person just doesn’t know what to say to me and everything just comes out sounding wrong. Am I too sensitive? Not sure yet. Still makes me want to slap them though.
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we could all get hit by a bus tomorrow! Hahaha! Gotta love the people who don’t know when to keep their mouth shut!
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I was told this by a doctor just a few days ago at my job. He first asked how I was and what I had. Then he told me he knew a lady who just got diagnosed and was only given 2 months to live. Uh, I'm sorry to hear but why are you telling me this?
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"Yes, I'm about to hear about a doctor who said something stupid and got kicked in the nuts."
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I just need to vent. I just had my last (woohoo) tissue expansion, and my Frankentitties (as I like to call them) are killing me, an expander is stabbing me in the side, I can barely move my shoulder and am having stabbing pains where they removed lymph nodes. to top it off, after shedding a hand full of pubes I realized most of them are gray!! 😝😝
My significant others close cousin posted on FB she had stage 2 cancer, doing bi lateral mx and chemo. I really like this young woman, and my heart goes out to her. That being said, she also posted she wants to talk to others who have been through it, but she only wants to hear positive things.
So should I tell her about the above?!? I sent a nice short private message. Maybe it’s my current mood, or maybe I am just a hag, but her post rubbed me wrong
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I feel exactly the same way!
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StlJoy- Frankentitties....I love it! I call mine Frankenboobs. Pisses off my husband so of course i just keep saying it.
Have a good weekend y'all.
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StlJoy - fwiw, I actually still want to hear only positive things.
There is plenty of time to worry about how bad things can get later on. I think it's difficult because it puts pressure on YOU to not be honest - the whole positive thinking always smiling crap that we're expected to do, even if we don't feel like it. But that just means you need to decide if you can be kind or be honest. And sometimes the kindest thing is to say nothing, kwim?
ksusan - oh that would be a super response LOL0 -
Mind you, I'd never say it, but I'd feel satisfaction to think it.
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Ksusan - thank you!I laughed so hard at your comment that I snorted tea out my nose! Lmao!
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StlJoy: The main takeaway I've had from BC is that a lot of people are just plain cowards. They're afraid to hear anything upsetting, or they're anxious about getting cancer themselves, and they really just don't want to know, so they say a bunch of stupid things to discourage you from talking to them. They don't offer even the minimal amount of sympathy required by good manners, or they minimize your cancer diagnosis, or they indicate in one way or another that you're to blame, or that you are responsible for other people's comfort and have to stay positive, or they give advice about things they know nothing about as a way of warding off real knowledge. For example, my sister stopped talking to me or calling me after I was diagnosed, and started texting me "You should see a therapist." Translation: You should find someone to talk to about your cancer, because I won't".
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4happygirl, I agree with you. Minimizing it will somehow make it go away or it won't happen to them because they exercise, eat right and don't drink. No one wants to hear the truth that anyone can get this, you may catch it early or late sometimes it doesn't matter. People die from this disease even after doing everything "right" or finding it early. Until we really know how to cure it people are going to die maybe not as many people will die.
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