The dumbest things people have said to you/about you
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Meow--the whole "be strong"and "fighting cancer" thing drives me nuts. Whenever I read So-and-so "lost the fight with cancer" my mind is translating "So-and-so didn't try hard enough to beat cancer".We should be saying "Medical science failed to cure So-and-so of cancer" or "So-and-so died when medicine did not eradicate cancer from her body".Those would be more accurate statements.In my opinion, the most accurate statement would be "So-and-so died from complication of failed cancer treatment" since that is what many, many people with cancer actually die from.
PingPong--it does take a huge amount of strength to hear that and do that. A huge amount.
Lula--I'm sort of with you.To me a Survivor is someone who has lived through a life-threatening occurrence that is now over and done with. With the recurrence risk and possibility of mets developing 20+ years after diagnosis, bc is never "over", so I can't say I've survived it, yet. I will only be able to say I am a survivor when I die of something else. Not really sure what to call myself, though. Good for you to be still standing, however it happens!
Seachain--I would love to see the looks on the faces of the people you've said that to!
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I'm not a fan of the term 'survivor'. 'It' is always going to be there the rest of my days as Native pointed out. If folks want to call me a survivor I'm not going to quibble about it, or tell them the term is a label that draws my mind back to the 'dark' days every time I hear the word. Their intentions are good so why quibble? I guess, for me, the word survivor represents a flashing 'big C' neon sign over my head. A reminder that I'll always be viewed as (and if I can borrow Seachain's dulcet tone) 'the one with cancer'. Not one of my friends or family has a permanent memory of my tonsillectomy or appendectomy. Wasn't I a 'survivor' after those surgeries too? Yeah, I get it, those weren't possibly fatal diseases, but the fact remains that they, along with me, moved on afterwards. I think when I'm asked what I want for Christmas this year I may reply "I'd REALLY love a big box of The Way You Used To See Me". Calling me a survivor is only yanking us back in time and keeping the memory alive. I did nothing special, I did what I had to do. That doesn't make me brave & strong. Brave & strong is the fireman that single handily rescues 14 old ladies from a raging nursing home fire. The frustrating part of the whole debacle is that cancer didn't just change me, it changed them too. Poked all of us in the eye and blinded us to what lies underneath the chemo needle or bald head....blind to the good part, the part that really hasn't changed much. Me. I'm still me. The me they knew before....an average joe plodding along in life. I've come full circle, and I need them to catch up, like yesterday. Until they do, and because their hearts are in the right place, I'll just smile and nod, hoping they take my lead one day.
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All of you said exactly what I feel. I survived round 1 but there's always that round 2 lurking in my head, and I keep looking over my shoulder, waiting.....
Egads - I'm not sure I am the same me that everyone knew before last May. I had to find a new normal and I've not only changed physically, I do feel like I've changed inside. I do still take things for granted, but I now pray that I live to see my 4 granddaughters grow up, live to travel with my DH as we had planned, and the list goes on.
My wonderful mum died at 104 from natural causes (I know, right??? Who does that??) and I can only hope that I see my 90's and be as healthy as she was. Well, almost. She drank a Guinness every single day with lunch and I swear that's what made her so healthy. We all learned to pour it the "right way" - even her caregivers at the end got the raised eyebrow if it had too much head!! I miss her so much but I thank God she was gone before my diagnosis.
I
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Snickersmom , I'm sorry you lost your mom, and that you miss her so much. Lost my Dad to cancer in 99, so I know where you're at. Thank god he didn't have to endure my cancer. At the point you are now I felt very much the same way, that it did change me and I couldn't see it ever going back. Over the last 5 years I changed again, and feel much more like the old me....not perfect, but close enough for now. Who knows, it could all flip right over on me again. I only can hope I can hold on tight to the 'basic me' I came back to. I'm hoping your new normal is a good place for you, and giving you peace of mind. You sure do deserve it!
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Thanks, Egads. I don't think we ever stop missing our parents. The me that everyone sees is the old me. But inside, there's so much stuff brewing and it just hasn't come out yet. I am at my calmest when I am in my she shack (otherwise known as my sewing room) working on a quilt. i can lose myself for hours and I love being able to do that. I do feel like I am getting better but I know I have a long way to go. I will get there!!
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Not happy. Not happy at all.
I was changing PS's to have my surgery in the proper treatment window indicated for my type of cancer after neoadjuvant chemo because the date I was given really is too far out for my type of cancer...I had to go in person to do this because I didn't have the number I needed and the general number for the office was just a recording asking me to leave a message. I finally got in touch with the right person but now my BS, who I like, can't do the surgery much sooner and the ORs are all booked up. I don't want to leave my current facility but I would also like to not die so I decided to check around at other facilities.
Place #2, which originally told me they could do it in the necessary time frame, said I need to have a follow up with the BS I had a consultation with months ago...understood, but there is not an appointment for that until AFTER the soonest my current place can do the surgery, ok, understood, I don't have a problem seeing a different BS, only they will not let me see a BS there who has sooner availability because their policy is you can only see the surgeon you saw at your first consultation. WTF? Well ok, if I am still considered a patient and they won't let me see someone who can get the cancer out of me in the proper time frame, as a matter of policy and not lack of availability, then my policy is reporting policies that needlessly endanger patient lives to JCHO.
Place #3 is happy to see me this week for a consultation but is out of network with my insurance.
I am positive I did not have a pCR to my chemotherapy because the tumor is still visible on MRI so those resistant cells will get almost a full tumor doubling time to multiply unless something can get worked out. In the month before my chemotherapy it was growing so fast it was visible. To make matters worse, I have increased angiogenesis and I now theoretically have more TMEM sites, in other words, more doors, more highways for cancer cells.
My surgery was supposed to be 3 to 4 weeks from my last infusion, 6 weeks max.
I'm just very upset about all of this. Why was I was even assigned a PS who wanted to book so far out to begin with?
The surgery scheduler for the new PS recommended I see if my oncologist can do anything about and I sent a message but if the BS no longer has anything sooner and there are no OR slots then I don't know what can be done other than find another facility, or just sit here twiddling my thumbs while my odds of survival drop.
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WC3-Unbelievable. I don't even know what to say. I hope and pray this can be quickly resolved for you.
Ann
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The most stupidest thing people told me are "you are eating potato chips so you got cancer" "you tried to have another baby and you got cancer" "you are not eating organic food so you got cancer" and million more. I really hate this type of comments. People have no idea ehat they are talking about. I would rather sit with a person with awkward silance in the room.
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Snickersmom:
Thank you. A way to cut down the surgery time just dawned on me so I just left them a message asking if that would move the date up. Hopefully.
I moved my post to the Steam Room for Anger thread, by the way.
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Egads--I'm with you, people's intentions are usually good, and I try to stay focused on the intent and not so much what is actually said, but with Pinktober in full swing and "fight" and "survivor" and such being bandied about all the time it gets tiresome. To add to your definition of brave and strong, the fireman CHOSE to go into the fire and rescue those old ladies. I most definitely did not CHOOSE to get bc! And I do hope everyone else catches up to us, someday.
SnickersMom--Your Mum sounds like a delightful woman! And I've got to wonder if the Guinness didn't have something to do with her longevity.
Bubbly--I hear you. I just think "How do youknow that?How can you be so sure?" someday I'm going to actually ask that of someone.
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So I've been having some fatigue and new pain. To make a long story short, went to see MO, he ordered Pet/CT, a few lymph nodes lit up, seeing the breast oncology surgeon tomorrow for him to decide if he wants to go directly biopsy or U/S or what. Woman messaged me on Facebook "I hope that now that you saw your oncologist you feel better and you'll have a fast recovery ".
Sure, lady. Seeing the dr. cures you of everything
I can't even.
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Don't report abuse and sexual abuse unless you have evidence. That is the stupidest thing anyone has ever said to me. Sorry couldn't help it.
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Meow - That statement hits stupid then advances into the reprehensible zone! I have a feeling you didn’t let that be the last thing said
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You know I had an abusive male boss when I was very young about 26 years old brand new software engineer the human resources person told me to take another job at the company. I moved to the new job never filing a complaint. This stuff happens I support the metoo movement and would hope that no one would say don't say anything.
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Don't drop in here too often but when I do I am always mortified by what people say.
Egads, I am particularly disturbed by this person claiming to be your friend. That is some serious passive aggressive bullshit she's got going on! This is Egad, she used to be fat. Are you joking? Man, you should pipe up, "And this is Betty, she used to be a bitch. No, wait, still is."
Regarding nipple injections, the day before my lumpectomy I had three injections of radioactive dye into my nipple. No freezing or numbing of any sort. It was not nearly as bad as I expected. I reminded myself that I'd had a baby and had 30 stitches in my hoohoo, with pretty much no freezing. I felt every stitch! If I can survive that (and I did) I will survive the booby needle - and I did. Needle lady marked my armpit with a Sharpie where the nodes lit up under x-ray (or whatever, maybe it was kryptonite?)
On the day of my lumpectomy they injected green dye into me to find the nodes, but they did this after I was out so I never felt it. However I did wake up with a few red marks on my arms and the surgeon telling me of within moments of being injected I had an abrupt and vivid all-over body allergic reaction to the dye and was spotted like a leopard, only naked, flabby, on a table, covered in a surgical drape and bright red welts head to toe. Now my chart says I am allergic to dye # whatever. Who knew!?
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runor - I was just about peeing my pants when I read your description of your dye reaction! Can't imagine what you looked like!
Evidence? What the hell evidence do they want???
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Snickersmom, I guess they think that everybody who had this experience has a blue dress hidden in the closet.
I was assaulted when I was 18 years old. Was beaten black and blue, so I guess I had evidence. Although, how could I have proven which particular guy beat me up? Could’ve been anyone, right? I didn’t report it to the authorities, and never even named the guy to my friends. I though it was my fault. It took me 27 years to talk about it, and all I’ve done was to write a short story describing it. It was such a cathartic moment! I was so happy while I was writing. My husband read it and almost cried. He said, I don’t I understand what were you smiling about, it sounds horrendous. And I said, because on paper I was in control. If I wanted to, I could kill him there.0 -
Seachain,
Sorry to hear about the pet scan, and that you'll be needing a biopsy. Hoping for minimal discomfort and good results..
Vickki
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Seachain--sorry to hear about the Pet/CT results. I wish it was as easy as keeping an appointment to make things go away. Praying for B9 causes.
Meow--don't report unless you have evidence? Really? It's the victim's responsibility to provide evidence?Talk about blaming the victim. It's that silence that lets this stuff keep going on.
Runor--Yikes, what a way to find out you are allergic to something! Good thing you were already in the OR where they could manage things before your airway closed up.
Inna--what a good thing to find control in writing about what was done to you!
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My great grandmother once told me of a time when she received a phone call from a friend of hers. They were having a girls night out at a club in the 40s or 50s and one of the women had become quite intoxicated and they wanted to know what to do with her as my great grand mother worked for a doctor. She told them to put her in a cab and send her over to her house, so they did. By the time the cab arrived, the woman was passed out and had clearly been sexually assaulted. My grandmother confronted the cab driver, asking what he did to her, and he just shrugged like he thought the woman was free game. I asked my great grandmother if they reported the guy to the police and she said no, people didn't report things like that in those days.
I have heard lots of incidents of sexual assault from women of generations before and none of them were reported because the women didn't know to report them, or thought it was their fault, or were too ashamed to do so, or were afraid, or the police refused to take the report.
Even today, many victims of sexual assault decline to report because they find it too painful to do so. There is a reddit subforum called TwoXChromosomes that is not sexual assault specific but filled with incidents of sexual assault that girls and women are/were too distraught about to report to the police.
But if they do report it, even if they don't have any evidence, that report will be there and could assist in lending credence to their claim should they decide to come forward publicly in the future or could play a roll in substantiating the claims of others who have been assaulted by the same individual.
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I never reported and not even said one word to anyone just tried to forget it happened. I drank too much and passed out, my fault. But I was in my own home and it was my boyfriend at the time, 20 years old.
I just want to scream it is NOT my fault I got cancer. It has nothing to do with what I did or didn't eat or drink or my exercise level or my weight ......
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Meow13:
Sorry your boyfriend turned out to be such a horrible person and put you through what he did.
I think there is a lot of pressure on women in society to be an infallible judge of character and people don't understand that most bad people are wolves in sheeps clothing.
There was an interesting study on victim blaming a while back that found howca situation was phrased strongly influenced whether or not people blamed the victim.
If it was phrased as "I was out for walk and he/she approached me and robbed me" the victim was more likely to be blamed, than if it were phrased "He/she approached me and robbed me when I was out for a walk".
Maybe we would get less blame for cancer if we said "Cancer has afflicted me" rather than "I got/ have cancer" but that still pegs the burden of avoiding blame on us, unforunately.
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innaB - How awful that it happened but how great that writing it out has been so cathartic for you! And you are right - you can beat the shit out of him on paper, cut off his boys, and then kill him. Even though it will be on paper, it is what you needed. My heart goes out to you
.Ann
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I love when people say “you will grow from cancer
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I guarantee you that guy's dick would have been way too small...
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LiveWellToday, the only thing likely to grow from cancer is more cancer! 🙄0
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I hear you. All my life, two of my four siblings have judged me and talked badly about me to the rest of the family. I used to care and stay in touch anyways, hoping that they would come around, but our conversations always left me feeling rotten. Not anymore, and it feels pretty good. I am thankful and happy for the love I share with my husband, daughter and close friends.
People guilt about families, but it's pretty common for people not to get along with siblings, and life is too short to pretend and to try to preserve unhealthy relationships.
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Meow--it may be your fault you passed out, but what was done to you was not your fault. It was the fault of the boyfriend. I can see how it's really hard to report something like that, though, especially some years ago when the prevailing attitude was that women did "ask" to be raped by what they wore, how much they drank, etc. Now if we can get medicine to get past the idea that women given themselves bc through not exercising, "wrong" diet, etc we might actually make progress.
WC3--that is fascinating about the use of language affecting perceptions. The same thing is taught in nursing school. There is a difference in how people are perceived and treated by medical people when referred to as "the patient with obesity" vs "the obese patient".
LiveWellToday--oh, yes, I have grown from cancer--from financially secure to financially struggling, and in so many other ways!
Pipandor--Well said!
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Another teacher at work was complaining about her periods and I mentioned I stopped having them because of Tomoxifen and she said, “I hate you.” Like she was jealous. I wanted to open up my shirt and show her the carnage on my chest
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Its scary that someone that immature is a teacher. Wow.
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