The dumbest things people have said to you/about you
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They told me that they couldn't wait until I was already under anesthesia because it would take a while for it to migrate to the sentinel node, and that they couldn't numb it because that could interfere with the migration. I was lucky - it hurt, but not as badly as I was expecting.
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I think you can't do the sentinel node mapping while you're under for the surgery because it takes time for the tracer to travel through the lymph. It's not like blood which circulates quickly, kwim? Lymph is slow moving so you'd end up being under for way longer, and that is not safe plus you'd take up space in the OR.
Mine did a bit of a local freezing before injecting the radioactive tracer & it didn't hurt at all. I'm sorry that some of you had to have it done in places which don't have that protocol.The current fashion is for snarky comments so it seems people say the first thing that comes to their head, no matter how dumb or cruel. I find I'm getting more judgy and impatient with immature idiots... cut them out of your life if they're people you actually know. If it's essentially strangers, walk on by. Time is precious - don't waste it on these people. Practice saying to yourself (or out loud to the person lol) "Why should I care what you think about this???"
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I am TIRED of my boss asking about my fatigue. As if that is the only SE I have had...I want to scream what about my hair, nails, hands, feet, skin, etc. etc.? It seems he is only asking because of wondering about my ability to work. I only missed ONE day that I did not work during the evenings or weekends to make up my time. Then he is surprised when I tell him I will be off next Friday for an infusion. He says “I thought you were finished with treatment" Uh no, one year of Herceptin means one year. I finally told him that I am as good as I will get. If anyone has a better response should he ask again, please post it!
I also hated the comments of “wow, you are finished with chemo already? That went by fast." Uh, sit in my infusion chair for 12 weeks and see if it feels like it went by fast.
BC does define relationships. People who I thought would be there disappeared. That hurt. And unlikely ones stepped up. That heals
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OMG, "that went by fast", "done with chemo already?". Anything is easy for the man who doesn't have to do it himself. I got that as a fortune in a fortune cookie once.
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Lovepugs, moth, I think I don't care about taking up time in the OR.Yes, Iknow, the more cases per room the more $ for the hospital, but I really do not care. Those injections HURT. I was essentially being told that the hospital's money was more important than causing me pain. And after being told that someone from anesthesia would be there to give me pain medication during the procedure and then not having that happen, I felt like I couldn't trust anything I was being told from that point on. It's been 11 years and I still have nightmares about that shot and the stinging, burning pain that lasted up until they finally put me to sleep for the lumpectomy. I still remember being told after I moved to the operating table that I had to stop writhing around or I would fall off and my trying to yell through my tears that I couldn't, my breast and nipple hurt so much. While waiting to go into the OR I overhead the nurse saying that it was too bad they stopped giving pre-op sedation and pain medication, it "really made a difference in breast cases."
Stawzie--the idea that cancer treatment is over and done within a matter of weeks is still pretty common out there. I still remember the looks on peoples' faces when I told them the hormonal aspect of treatment went for 5 years. "But aren't you cured?" was the most common response. The look on those same faces when I told them I will only be considered cured when I die of something else was amazing and priceless, sometimes. As to responses to your boss about fatigue, that's a hard one. Perhaps, "Yes I am still covered under the ADA and reasonable accommodations must still be made for me."Or maybe "Is there something wrong with my performance that you need to let me know about?" Or "Why do you keep asking me about fatigue?"
Meow--good point!
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Nativemainer, I too had traumatic pain from the nipple injections. So much so that when my margins were not clear I decided on a BMX. No one would ever put me through that kind of pain again. I had a lot of anxiety going into the mapping process before the lumpectomy...I was incorrectly told that I would receive an IV drip to relax me as soon as I checked in to the hospital. When my pre-op nurse placed my IV, I asked when they would start the drip. She looked puzzled and said I wouldn't be getting anything until just before surgery. I was begging for a Valium or Xanax. She said I couldn't have it because my BS didn't order it. He was right down the hall. My husband couldn't be with me during this time and I had no one to advocate for me. It is barbaric to think you can inject an isotope or dye into a nipple and not cause traumatic pain. When my BS found out after the fact he was furious that no one contacted him. He said of course I could have been given something for my anxiety.
The reason I was told that I could not have anesthesia for the mapping was because I needed to be conscious with total awareness to speak with the anesthesiologist and sign the documents prior to the lumpectomy. I have a lot to say about how the process could be improved.
I have read on BCO that other women breezed through it. Maybe it's the Radiologists technique or maybe it's the location of the tumor and the Sentinel Node. Anyway, procedures need to change
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Thanks Meow and NativeMainer, I am going to use some of those suggestions!
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Nativemainer, they didn’t frame it to me as too much time in the OR. They didn’t want to give me anesthesia for all of that extra time.
It’s amazing how different all of our experiences are. I had the radioactive tracer injection in my left breast for the sentinel node biopsy and a wire localization in the right beause I had DCIS in my right breast. For me, the wire localization hurt worse.
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Bella--I agree, whole-heartedly.
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I really can't buy that time under anesthesia is all that big a concern. My recon surgery was 22 hours and 45 minutes. Nobody said a word about that being too long under anesthesia.
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Exactly, NativeMainer. They likely say that so you won’t question it. It really does come down to time in OR and wanting to move as many patients thru as possible...time is $$$
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My son asked how I was doing, so I told him the fatigue from the radiation had me feeling very weak. He said, "Oh well that's not all of your life, hows the rest of it going?" I just said fine and he said, "That's good!"
Ran into a lady at church, she kept saying, "But you look really good...." Well, I guess that will have to do for now, at least I don't look bad...geez.
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I didn't have to have radiation or chemo but am on Arimidex for 5 years. I had a BMX last year, feel good most of the time, and apparently I look pretty good, too, I take a dance class with some friends/neighbors which is taught by a survivor who had radiation and chemo and really struggled through it all. She's done now, her hair grew back, and she said she feels good. She had reconstruction; I did not. One of my friends has said several times how much she admires this woman, ho strong she must be, how much she went through, etc. I always just shut down when she says this. It doesn't occur to her that she's minimizing what happened to me. My husband says I need to tell her that. I know he's right
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TrailDweller--It's so hard to not be feeling well but looking "normal" or "good". It's almost like if you don't look like a walking cadaver you must not be really sick or have anything going on! People simply DO NOT UNDERSTAND!
Snickersmom--If she is your friend, gently telling her that sharing her admiration of the teacher feels like she is minimizing your experience. If she is your friend, she will want to know she is (inadvertently) hurting you. If I were doing something like that to a friend I would want to know so I could apologize and stop doing it.
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im not sure why it bugs me so much, but it pushes all my buttons when people ask me what I ate, or if I exercised or smoked? Grrrr
I was the health nut people rolled their eyes about...eating whole foods organic everything, little sugar, mostly veggies, nuts and fruits. I was feeling great, had lost weight, was fit and shocked to learn I had cancer.
Since chemo, I've sprained my knee, tore ligaments and the meniscus. I hobble around like ke a 90 year old woman. Everyone supposes I didn't exercise, or they think I ate junk food and sugar. I caused my cancer.
It's my biggest irk. Especially because I pompously thought “I'll never have cancer! No preservatives, no sugar, never artificial sugar, no sodas, no plastics, never used bug or pest control, no lawn control.
Why do I just want to punch people when they ask me if I ate junk food? My good and wise friend says people ask me because if I caused my cancer, then they would not get cancer. It's out of self preservation. For me, it's a God Slap, because I was one of those self righteous intolerable folk and I was “healthy". I wouldn't get cancer.
I thought. WRONG!
How about those well meaning friends that send Facebook internet tidbits? Drink this tea for a cure, take this supplement or eat that, or “don't trust the medical community". I smile at them as I take my chemo, hoping I’m doinf the right thing
Ok... my rant is over.
Thanks for letting me go on about my biggest irk. It's hard to swallow. Does this happen to you?
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I find people say these incredibly stupid things to make themselves feel better. They would rather blame you grasping at straws OMG you drank a diet pepsi. Next time someone says something like that I am going to respond you might be next. Absolutely nothing concrete to alleivate the fear of getting cancer. When your numbers up that's all it is.
Still, can't get over someone saying "done with chemo already? That was fast".
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Dandelion Hair:
Same. Kind of. I didn't always eat organic because it was out of my price range and I was not sugar free, but my diet was pretty healthful by most standards and I exercised regularly in addition to the fact that I walk everywhere. My lifestyle was healthier than that of anyone in my family. Maybe I drank out of too many BPA containing water bottles. Maybe I did eat too much sugar, but those causes are pretty weak compared to the fact that I have dense breasts, am the 5th woman in my family to get breast cancer. and the 2nd one to get it in her 30s. BPA was not in commercial use when my grandmother and great grandmother had breast cancer. If you wanted a drink of water it was going to come from a cup or drinking fountain or ladle.
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I have had a lot of stupid things said to me - most people really don’t get what a stage IV cancer diagnosis means. The one that bugs me is calling it a chronic disease - I wish but not true right now. I hope someday that will be the case. I think it bothers me so much because I feel it minimizes what I’m going through. For some reason being told I look good doesn’t bother me, we all have different buttons. Like many of you I also lead a very healthy lifestyle and still got cancer. I have not had anyone personally blame me (more surprise that someone so healthy got cancer) but I’m kind of sick of all these articles of how to prevent cancer- did all that and it did not help me. Yes we should try to be healthy but cancer will do what it wants. Even young children get cancer and I’m pretty sure it was not their lifestyle!0
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DandelionHair, this gets to me too. People ask Did you smoke? Or anything like that.... I am growing many of what we eat, the meat we eat comes from animals growing happily nearby and eating just grass and drinking mother's milk (calf, lambs), we live in a nature reserve area, we never use anything artificial in our garden (no fertilizer or weed killer, just compost or manure and hand-weeding), there are even no fields of crop anywhere nearby that may be controlled by herbicides, I had 2 children and breast fed them both untill they were 1,5 years old...we eat o lot of veggies and fruits all bought locally or hand-picked by us and frozen (berries, berries - half of our freezer is taken by them)..... My BMI is 19-20 my whole life (not counting the pregnancies of course)... but I am the 3rd woman in our family to get this, the previous two both were 60 years old. And of course, I never once had even one try of a cigarette in my entire life. But then, I used some plastc bottles in the past... and used birth controll for a few years...
I believe what your friend says, and Meow13 too - people get a feeling of security when they find something you did differently than what they are doing. They think "oh, she used to spent more time in the pub than I do, the poor lady, I can't get cancer since I go there less often" - or whatever.
But this is all moot, since nobody knows for certain (not even the scientists) who's gonna get this and who's not. There are some risk factors (smoking, birth contoll), but then again - some folks are smoking like chimneys and never get cancer. There are some protective factors, like breast feeding, but what about me and many othets who breast fed four children in a row and still get this crap?
Meow13, I like your answer: You might be next. Thats a great answer for people inconsiderate enough to try establish their feeling of security at our expence and making us feeling bad while they are at it.
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KatyK:
I know what you mean about the articles. A lot of them recommend foods I ate in quantity for years or fail to recognize the distinction between foods that may reduce risk and foods that may inhibit cell proliferation once cancer is established. And then there are the fear mongerers telling people Nutella will kill them. Nutella contains palm oil (as do most margerines and commercial baked goods) and palm oil can form carcinogens when improperly heated and contains a lot of palmitic acid which and has been shown to significantly promote metastasis in some cancers/cell lines. However most oils for consumption contain some palmitic acid so avoiding Nutella alone won't mean someone's diet is palmitic acid free, and many other oils also form potential carcinogens when heated to certain temperatures, and if a person doesn't have cancer then palmitic acid isn't going to spread anything. Nutella also ensures the palm oil they use is mot heated to temperatures high enough to form carcinogens. So some Nutella on toast a few times a week is not going to hurt most people, but the articles never mention any of that.
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DandelionHair--of course it pushes your button when people ask questions that are actually asking "What did you do to give yourself bc?" It's a form of blaming the victim. I got it mostly with the "Be Positive" instructions. I am and was overweight, so it was automatically assumed that I got bc because of that and not eating properly and not exercising. I'm sure that subconsciously some people are looking for reassurance that cancer can't happen to them. The reality is that medicine does not know enough about how cancer happens to be able to say that anything we do makes any difference. What about the big study that was done that showed that women who had bc who followed the recommended veggy based, low fat, very little meat diet got recurrences and later mets just as often as women eating the "typical American" diet. That's right, Diet Made NO Difference in recurrence or death rates. But how I ate caused bc?I don't think so.
OK, rant over.
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I have a friend who blames everything on diet. The said this to me about other people who recently: 1) were diagnosed with stomach cancer 2) were diagnosed with Parkinson's 3) broke their ankle. I only wonder what she says about me behind my back!! LOL(This same woman doesn't believe in colonoscopies, mammograms, and doesn't vaccinate her dog.
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NativeMainer:
I think diet can be an important component in some cancers, more so if it can be tailored to a person's specific and individual cancer, but I also think there are situations where the cancer is more aggressive than diet alone can handle. When I was first diagnosed I made what changes to my already healthy diet that I could. I cut out sugar, bad oils, went low carb, and cut out dairy. There were about 40 days between my diagnosis and start of treatment and in that time, did the cancer slow? Did it not spread? I don't know, I can only hope, but what I do know is, it did not stop growing and was growing faster enough for me to notice.
My cancer is HER2+ and has something like 2 million HER2 receptors compaired to the 20 or so that a normal cell has.
Sugar and certain componants of dairy can help it grow and I am still limiting them in my diet but the thing that helps it grow the most, my body makes naturally, and I do not know of a diet that can out pace that at this stage. Maybe the right diet could have prevented it or stopped it when it was just a few cells or could have stopped it from becoming invasive but I would have no idea what that diet would be except for the fact that it wasn't a conventionally healthy one.
Maybe I would have had to have eaten a better diet in adolescences. One study found that a poor diet in adolescence was associated with an increased risk in premenopausal breast cancer and researchers speculated it was irriversible. But I didn't control my access to food at that point in my life and my family history kind of indicates my cancer wasn't diet or lifestyle driven.
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I like the post hoc analysis of my treatment choices--I shouldn't have had BMX because it's faddish and unnecessary (never mind that I had no option for lumpectomies given the sites). Am I supposed to hop in my time machine and choose no surgery over BMX?
Bonus comment: "I'd never get a mastectomy because it's maiming and ugly." Thanks. Thanks very much.
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Most of the silly comments I can put behind me, but I just got this one an hour ago: "You don't look sick. Do you feel sick?" "No." "Then I wouldn't have surgery; the doctors just want your money."
Or my all-time fav that will always stick with me: "I'm sure you'll be fine. My husband's uncle had prostate cancer, and he's fine."
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Unbelievably stupid. Early breast cancer usually doesn't have any symptoms whatsoever.
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Stubborn-how does that friend explain the connection between diet and a broken ankle?
WC3--I can accept that diet MAY play a role, but until medicine truly understands how cancer starts and grows and spreads I will consider my getting bc as a failure of the medical system to me, not something I did to myself. If poor diet in adolescence plays a role, then what about diet in infancy? Or the mother's diet prenatally? If the immune system is responsible for killing cancer cells when they first appear, then if a person is eating the "right" diet, do they still get cancer?Or any other infection, for that matter? Shouldn't an immune system able to find and kill single cancer cells be able to totally fight off any viruses or bacteria when just a few have entered the body? The logic just does not follow in my mind. But then, I've been told again and again that I wouldn't have gotten bc if I wasn't overweight. Frankly, being over weight isn't a choice I've made, either, but it's assumed it is. Arrghh.
Ksusan--"I'd never get a mastectomy because it's maiming and ugly."Response: "So you would rather die young with an intact body? Or you would rather not be able to walk and have no scars than replace a bad knee?What are you planning to have made with your skin that it has to be perfect when you die?"
Piksie--REALLY?????And prostate and breast cancer are SO similar. . . .
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Shortly after my bmx I went to a class on meditation. Afterward I was talking to a woman and told her about my surgery. She said she had a “bad” mammogram too and went a different way so she didn’t have bc. I was too stunned to ask her what she did to make her suspicious mass benign.
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Today is my last day at work before my second mastectomy tomorrow for a regional recurrence (same cancer, same boob, positive lymph nodes). I'm expecting many well wishes and probably a few stupid statements. For entertainment, I'll let you know of any zingers. I know they love me (mostly).
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My oncologist had the absolute best line. It still has me smiling. I’m a little on the heavy side and the dr slipped out to calculate dosages and it took him a while. The explanation: My height didn’t exactly match my weight. It took me a min to catch on and I warily responded if I needed to eat less to fix.The answer, nope you are you, and you are perfect just the way you are. It was the best bit of fun I had all day.
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