The dumbest things people have said to you/about you
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astorm/gail, my sister said the same thing about me when she heard the news. I had major back surgery as an 11 yr old, she wished that she could have taken this from me. Last year our local support group in an art therapy sessions made 'art bras' and my sister made a 'brick house' bra and dedicated it to me, my mom and all the other strong women who face this disease and withstand the problems associated with it.
Sheila
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Oh, yes. I was so amazed by the outpouring of support when I had the BMX. My room looked like a florist shop for weeks. Apparently word got out amongst my clients and someone got ahold of my home address... every client sent flowers. And just when the last blossoms were fading, I received the biggest and most beautiful arrangement I've ever seen from DH's aunts. And the clients have been really considerate of my time. Several called me to tell me how much they appreciate me -- as a PERSON and when I walk into an office now I always feel like they are genuinely glad to see me (and not just to fix their problems).
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This is a play, in one act. It took place last night around 11:15 p.m., as I called my prescription drug insurance carrier to see whether (or when) I would need to switch over to the generic version of Arimidex.
Me: "I am on 'Arimidex'. It's a cancer drug. Can you check your computer to see whether I can still get one more refill of my Arimidex prescription before it goes generic? And, can you tell me when the generic form will be in your formulary so it will be covered on my insurance plan?"
Insurance Guy: "Hmmmm...." [long pause, with lots of keyboard sounds] .... "Hmmm.... I don't see 'Arimidex' on our formulary at all."
Me: "I guess that means I'll need to switch to the generic form. I realize the brand-name version is really expensive, so I won't mind switching. Do you know when the generic version will be included in the formulary?"
Insurance Guy: "Hmmmm... .... [pause] ... I don't know. I guess the formulary is in transition ... [pause, with more keyboard sounds] ... Do you realize what that drug COSTS???"
Me: "Um, ... I know it's obscenely expensive. Something like 10 dollars a pill."
Insurance Guy: "Well, I'm looking at it on my computer. Do you want me to tell you what it costs???"
Me: <sigh> "No, not really. I already have a pretty good idea, since you guys have been sending me quarterly claims reports ever since I started taking that drug."
Insurance Guy: "Well, it costs A THOUSAND DOLLARS!!!!"
Me: <sigh> "Yes, I know. But, that's for 90 days, right?"
Insurance Guy: "Yeah -- A THOUSAND DOLLARS, for a 90-day supply!!!"
I can't tell you all the things that were rushing through my mind at that point, as I listened to some d*mned insurance clerk fussing at me about the cost of my cancer meds at 11:15 at night.
"No sh*t, Sherlock." ... "Hey, jerk: do you know anyone who's being treated for cancer?" ... "Do you have a clue what the other phases of cancer treatment cost, in comparison?" ... "How about if I stop taking Arimidex and my cancer metastasizes -- you really think that's gonna be any cheaper???"
Instead, I just muttered something like, yes, well, I just wanted to find out whether I can still get the brand-name version, since the generic probably isn't available in my pharmacy yet. And he said (this is the guy working for the company that makes those decisions, right?): "Ask your pharmacist -- maybe she can find it in her computer."
So I thanked him for his helpfulness (NOT) and hung up the phone and went to bed.
otter
[Edited to change "10 cents a pill" to "10 dollars a pill". Wishful thinking, I suspect. I assumed it was a typo I made in my post; but now I'm wondering if, in my sleep-deprived stupor, I told the insurance guy I thought Arimidex cost 10 cents a pill. No wonder he acted so weird.]
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Otter - well, you should be ashamed for costing them so much money! Sheesh, you'd think you were asking them to cover botox or viagra or something. I think I would have said, "and my LIFE is worth every single penny. Is YOUR life worth $12 per day?"0
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You know they are all in the business to make money! They claim they don't, but when you pay the big-bosses those huge salaries, they have to make it up somewhere.......by denying coverage and limiting tests available.
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In 2008, I found out I had bc....stage IV off the bat. I immediately had a bmx without reconstruction...not really an option for someone at my stage. I don't really care and just go flat...who cares?!
Anyway, I went camping with a large group of friends this weekend and I don't know how it came up, but one of the guys turned to me and said that I was 1/2 a transexual because my breasts were gone. I have one VERY tough skin, so without even taking a pause I shot back......"well, I guess most of you guys qualify as transexuals because you have grown some mighty big man boobs!!! "
I laughed my @ss off and the guy had the most shocked look on his face and ACTUALLY grabbed his chest...LOL!!!! If only that were on video.....classic!!!
We all had a great rest of the weekend and this guy learned not to mess with me cause I would win...LOL!!! I don't get mad....I get even :> lisa
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Lisa - LMAO with you!
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Lisa: Way to go.
Otter: Don't you just love how computers decide things? If one more person tells me, "the computer won't let me do that," I will "go NativeMainer" on them. See what the pharmacist can find in her computer? It's this hidden info only her computer will reveal? I like Astorm's atttitude of "I'm worth every penny."
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Lisa my first smile of the day!!! Great come back......I love it!
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For the most part I only have positive and thoughtful experiences with people from the time of my dx. However,I have one that still stands out in my mind. My husband and I ran in to a business assoc wife We had also done several things together socially as well. Anyway ,we ran in to each other one evening and my husband mentioned that I had been dx with BC,was in the middle of chemo and this was one of my first outings with a wig. She replied "oh my God,I'm so glad to hear that because I knew you wouldn't leave your house with your hair looking like that." I was dumb-founded! I couldn't even think of anything to say. My husband was blowing on my eyes to keep the tears from rolling. I didn't want to burst into tears in front of everyone. We ran in to each other a few months later and she said she was sorry for the comment. She was just trying to be funny. I told her that everything I had been throught so far,she was the only person who had made he feel bad about myself. Not bad but self consience. Another funny thing was a Facebook friend sent me a messgage last March telling me she was sorry she hadn't called me to check up or see if I needed anything but she didn't have my phone number. I had my surgery in Oct,she sent the message in March and we had been Facebook friends for 1 1/2 years. Thank God for friends and family.
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I was having a prescription filled and was asked by the teenage clerk if I had met my deductable yet. (This was the first prescription filled after the New Year). I said "I don't know. Does the chemotherapy I had this morning count?"
Clerk: What was the name of the drug?
Me: Herceptin. It costs a couple thousand dollars.
Clerk: (after taping Herceptin into her computer): Well it hasn't hit your account in the computer yet. Did you get that at Walgreens?
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Chuckling - That would be nice, wouldn't it?!
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squidwitch42 I am doing well. I have huge bruises on my thighs, hips and breast, now they are a yellow-green color that looks so weird. I saw PS on Monday and he said that looks great! This cancer journey makes everything relative! They also removed a lump from my left breast which was negative. I was told while in recovery that the onc surgeon was brought in to check things out. When they told me this it caused me to have 'flashbacks'. What a terrifying moment that was. Whew!!! It never occurred to me that they would have him involved so it really freaked me out! Anyway I can start exercising, running and swimming next week. That's been my therapy so I can't wait to get back. I hope you are doing well. I'm sorry to hear about the experience you had to go through with your sister. It's so hard when we need them to be strong for us and they can't especially when they then go and stick their feet in their mouths. This cancer journey ... what a long, strange trip it is ... and who would ever imagine we'd be here!!!!
Lisa OMG you cracked me up. I'm still snickering! Nothing like a nice set of moobs (man-boobs!)
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That is very interesting about you saying they fling us around like rag dolls. My PS said something about flipping me back and forth and I hadn't really thought about it till now.
NM - I can't imagine how exhausted you must be after that long of a surgery ! I know my was supposed to be 9 and I was worried about it till my wonderful music teacher I had when I was a child and is now in his 80's and wheelchair bound told me his surgery(colon/liver cancer) 6 years ago was 18 hours and within a month he was on a plane to do shows in Europe. So I thought well, then I can surely do the 9. But I think one everyone reacts differently and two my dad had liver cancer and as I remember he bounced back very quickly. So back to the whole throwing us around in there - I do think something "more" must go on in the opertion. Also the whole psychological thing - just so hard!
A-Storm - I'm so glad your sister turned out to be supportive. Mine sisters tried but maybe we are just too far apart for even cancer to bring us together - so it was sad.
Kate - I agree I found people who came and gave such support that I never expected and close friends came for a quick visit or phone call and disappeared. Very strange how it all plays out.
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Two of my favorites:
"I hate to ask this. But do you think you got breast cancer from having that Botox?" (and this from a semi-famous lawyer/disabilty rights advocate/author)
And from my co worker, after I was diagnosed for the second time:
"So you mean it spread from the other breast?"
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Stanzie - well, you have your sisters here at BCO now.
I think my docs have been pretty gentle with me in the OR -- I've never gotten brusied or anything but they do have to sit you upright to see how the foobs will react to gravity. It did make me a little nervous when I heard that my PS listens to rock music during surgery. There is a surgeon on Grey's Anatomy (which I can't watch anymore since my dx) who listens to heavy metal. Maybe I should add that to my PS questionaire, "and what genre of music to you listen to in the OR?".
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I am amused by this thread and want to share some of my own funny stories. But as I prepare for pbm I need a plan to avoid these nonsensical responses from people. I honestly do not want people to know, other than a few close friends/relatives. Is that doable?
A story to make you chuckle: A priest violated HIPPA policy and found my name on surgery list for breast surgery. apparently there is a code # used by clerics online, and they gain access to all the medical info (this story is 7 yrs old and I did take measures to remedy the situation) anyway, the priest runs into my husband at a church function (we are not parishioners there) and flat out asks "Did Eileen have a lumpectomy or a mastectomy?" My husband, being a man, gives the priest the info and thought nothing of it. I burst into tears when I heard the story. Called the priest the next day. the priest assumed I was calling to thank him for talking to my husband about my illness, which he never should have even known about! Well, I ripped the priest a new one. He started SCREAMING at me that I should show more respect for a priest. somehow I collected myself and said "Father, you have several sisters. ASk them how their body image might be affected in my situation" I heard a few yrs later that he did learn a lesson from our encounter. After his sisters yelled at him for being such a dope.
Not-so-funny story (but hopefully insightful): Everytime I mention to my best friend that I am having a mx she blurts out "My problem is that my boobs are so big that my back hurts. Maybe we could get a two-for-one deal and I can get a reduction while you get reconstructed" I mentioned it to a therapist who asked "Does your friend have a loss related to breast cancer? she sounds like she is telling you it is a subject she just cannot discuss" then I remembered that my friend's mom died suddently of advanced breast cancer. My friend never has had a mammo b/c she is terrified that she will repeat her mom's story. soooooooooo. I am not going to confront my good friend on this hot button issue. she'll be the one to pick up my pain pills in a hurricane, etc. It is what it is. I love her to pieces.
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I have a friend that has fallen out of touch a bit starting a few years ago when I moved to a day shift position (she has remained on nights) and she had a child. But after I told her I had cancer in early Feb., she's really been conspicuous by her absence. Then a couple weeks ago, she called one weekend and I was excited, only to realize she was calling to ask a favor. She'd had a medical emergency with her dog, needed supplies, but had to go to work. Her husband doesn't drive due to epilepsy.
I agreed to get the supplies and let her pay me back. When I arrived at her home, her husband and I chatted a bit, and he asked how I was doing and I said fine, although my hair is mostly gone. When I pulled off my hat, his jaw dropped. "You have cancer?" Awkward.
How in the hell has she not managed to mention to her husband in over 4 months that I have cancer? And now I'm taking a dimmer view of how 'busy' she's been since my diagnosis. What is going on here? She's an intelligent woman who works in health care. Why am I getting the cold shoulder?
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The worst was from my husband the morning following my bilateral mastectomy. I had to run into the office to sign some papers; the Dean, VP of student affairs, Nursing Program Director were on the first floor near the elevators. (I am a Program Director at the College.) They were obviously shocked to see me there knowing I had the surgery the evening before. They asked how I was doing - and my husband blurted out, "Oh she is great, and we can hardly wait to get the 'anna nicoles' implanted". OMG, I was speechless and so were they ... (oh, and by the way, I am NOT considering reconstruction at this time or in the near future, and yes, I am still married to him.)
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NM---on mark. Nurses KNow everything. For each subject that we know well, no one has a clue how much we study. Oncology nursing is one of the hardest subspecialties if learned well. The frustrating thing I have found in all the areas I've worked, is the nurses who only have put in superficial time learning what they are doing. I had a new grad say once she was so bored since she graduated because she wasn't learning anything new. I said to her now is the time to direct your own learning. Gave her the plan how to do it. She looked at me blankly. She didn't get it. She was on the administrator track and made no bones about it. eck. NM I would like to start a nurse thread I sent you a pm on it , but in case there are other nurses that may read this, we may be able to do something. I have been on a different thread and they are wonderful healing people growing towards normal. But I slip into frustrations known only by nurses who know what ought to be and isn't and into language we know that takes explanation. So, what do you think, we can't be the only two here that are nurses and have BC? PM me back if you are interested?
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I would say it is more like 'one week per hour you were under' for recovery. My surgery took 6.5 hours and I was a complete mess for a week afterward - was sick for 4 days - couldn't eat and had to have regular anti nausea shots to stop the retching - and my mind was mush - couldn't watch the tv or listen to music and I even found it difficult to concentrate on conversations - just lay there like a zombie waiting for time to pass even when I went home on day 5. Took a good two weeks before I was able to watch tv for any length of time and about six weeks until I was able to read again - my brain just didn't want to focus on stuff like that. I was prepared for the nausea but not the brain disturbance and I found it quite disturbing as no one had warned me that this could happen.
Funny thing happened to me this week - my friend had a burst appendix and had to have emergency surgery late one night. I visited her a couple of days later and she was not feeling very well and showed me bruises from her surgery and I boldly said 'well, my surgeon was fantastic, I didn't have any bruising from my BMX, he must have been so careful and gentle'. A couple of minutes later her surgeon walked in and it was MY surgeon! - talk about egg on my face! She was wonderful and didn't let the cat out of the bag and we laughed and laughed when he had gone although it hurt her tummy.
Rae
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I told one lady at work about my diagnosis, her reply was, "you too? Oh my God, this cancer things is such an epidemic! I know of at least 10 other people in my church alone that have been diagnosed with some type of cancer" then, she proceeded to tell about each person she knew of...blah, blah, blah...
All I could say was that it was probably because medical technology has made it easier to detect these things earlier..I didn't know what to say..All I really needed was a hug...
Other folks just tell me, "you are going to be fine. I had a friend who had it and is doing great". Although I appreciate them trying to make me feel better about the situation, it's hard to wrap myself around everything right now...it's still too early in this process and I am still so raw. Most of the these folks I"ve only know for a few months, (because just started this job in March and don't have family or friends around)
So, really nothing too dumb at this point, I'm sure they will be coming and I will be armed with some really good comebacks that is for sure!
Tori
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Claire83--Thanks for all the positivity!
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Sheila - there is a forum for Nurses with Breast Cancer. I bumped it up so if you check "Active Topics" it should be near the top!
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Torigirl
Your word 'raw' is just so true - gave me chills when I read it. I found lots of things really upset me for a long time - made me quite panicky, racing heart and scared. I am not that sort of person at all but I just couldn't stop the stupid thoughts and the bodily reactions they caused. The worst was on the way to and from home as we have to pass our local hospice. I was terrified I would end up there and each time I passed I would be in full panic mode - hot, sweaty, panicky. It was just awful for ages as I couldn't avoid it. But the good news is that today, at 17 months from dx, I drove past for the first time without any reaction! Time does heal as long as you face and accept your emotions - hang in there!
Rae
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Yeah, I'd like to add my two cents.. my best friend said 2 weeks after my lumpectomy, ok its time for you now to move on and let go.!!!! I said I wish i could, but i have a radiation ahead of me for 6 l/2 weeks, my breast is still sore and I am still a bit traumatized,. I had calcifications and was told my nurses, radiologists, my gyn, friends, they are 85% benign you have nothing to worry about. And lo and behold, I fell in the 15%..so yeah It was a shock. Then a few other relatives told me i should go on an antidepressant, Gee, cant a girl grieve for a few weeks, right away they want the magic pill to make it all go away,well i told them im sorry folks, If you love me, you have to take the good with the bad. sorry I cant be the way everyone wants to see me. If i was sitting home crying and not functioning everyday i would take the damn pill, im not proud. Sure I wish i could have handled it with more grace than throwing myself on the floor and crying at least 3 times.. but everyone handles things differently.. as long as I still go to work and do whatever I need to do, I really dont care what others think about how i handle my stress. I have been very proactive from the beginning and still am, but what can I say, I feel sad. I would only take the advice of someone who was in my same shoes and if they said hey, you need to do this, then i would be more inspired. I do believe they all mean well, and maybe there is some truth in what they are saying but as I told them, if i got to the point where i feel i needed to take something, Im not stupid, I would take it. It just annoys me the whole thing.
If you cant say something positive or helpful or inspiring best to keep your thoughts to yourself.
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Yeah, I'd like to add my two cents.. my best friend said 2 weeks after my lumpectomy, ok its time for you now to move on and let go.!!!! I said I wish i could, but i have a radiation ahead of me for 6 l/2 weeks, my breast is still sore and I am still a bit traumatized,. I had calcifications and was told my nurses, radiologists, my gyn, friends, they are 85% benign you have nothing to worry about. And lo and behold, I fell in the 15%..so yeah It was a shock. Then a few other relatives told me i should go on an antidepressant, Gee, cant a girl grieve for a few weeks, right away they want the magic pill to make it all go away,well i told them im sorry folks, If you love me, you have to take the good with the bad. sorry I cant be the way everyone wants to see me. If i was sitting home crying and not functioning everyday i would take the damn pill, im not proud. Sure I wish i could have handled it with more grace than throwing myself on the floor and crying at least 3 times.. but everyone handles things differently.. as long as I still go to work and do whatever I need to do, I really dont care what others think about how i handle my stress. I have been very proactive from the beginning and still am, but what can I say, I feel sad. I would only take the advice of someone who was in my same shoes and if they said hey, you need to do this, then i would be more inspired. I do believe they all mean well, and maybe there is some truth in what they are saying but as I told them, if i got to the point where i feel i needed to take something, Im not stupid, I would take it. It just annoys me the whole thing.
If you cant say something positive or helpful or inspiring best to keep your thoughts to yourself.
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maryvanessa1
I am sad too, even after 15 months. BC is a very traumatising experience and being - dare I say it - positive, strong, proactive etc is what gets us through what we need to get through but it won't fix sad. We need to grieve for however long it takes - anything up to two years my doctor says.
My thoughts are with you
Rae
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I am still sad too - not all the time, not every day, but often enough.
Ofcourse I'm happy and grateful I'm still here, with all my loved ones.
But I'm also sad at times.
I can't explain to others why this is or what kind of sadness it is, only people who've been there seem to understand.
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Hi, all, just got caught up with this thread--thanks for all the well-wishes! Especially the reminders that it takes time to fully recover from anesthesia. Day 15 and still having trouble concentrating, especially on the computer, but getting to be able to read, one of my favorite passtimes, and that helps. I'm hoping I can get one of the drains out today, will have to wait to hear from the PS office. Mostly I am just sooooo tired of being tired. . . .
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