The dumbest things people have said to you/about you
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NativeMainer- yeah, the "new normal" makes me cringe. Partly because everyone refers it to be worse off than we were before. Seems so pessimistic... if only I felt 150% better than before bc... that happens to some people, doesn't it? Some days, I let my optimistic mind wander there. But then again, I am very moody.
![:\](https://community.breastcancer.org/resources/emoji/confused.png ":\")
chicopeach57- that sounds lovely, to be in a place where people don't know about your bc unless you had told them! And gosh yes... my poor hoohaw, as you say. One of the reasons I chose my MO was because she told me before chemo that I was going to want to get a gynecologist and a dermatologist that I really liked... because I would probably want to see them often.
It was eye-opening, but I'm glad she acknowledged the ugly parts of treatment that many people aren't willing to talk about.Falconer- ah, I know that feeling. I'm sorry you had to deal with that moment of ignorance. I find it sad that everyone assumes I'm happy with augmenting given breast reconstruction. But if cancer hadn't made the decision for me, I would've kept my humble small breasts and nipples as they were. In many ways, I have not finished grieving the loss yet.
MJ- glad you were honest with folks. I think we do ourselves a disservice not to be vulnerable and open/honest about how we're feeling to people who matter. It's easy to say that I'm doing just fine if I don't want to strike up a conversation with someone. But it does get exhausting, pretending to feel OK when in fact, my entire body aches, my surgery site is spasming, and the taper effects of chemo (eyes and nose leaking, having no energy, being dried from the inside out, tinnitus, neuropathy), are making feel like a prisoner to my own body. Not to mention all the morbid thoughts running through my head at any given moment. Not that I want to complain all the time to everyone about it, but I do wish people understood just how long the recovery road is, and how hard it can be for some of us.
Big hugs to everyone.
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Chicopeach--LOL!Good response!
Falconer--there is a huge difference between getting desired cosmetic breast surgery and reconstruction. People do not understand that the whole journey is different, and the reactions are very different.
Tappermom--while we know that others are going through worse and more than we ae, what we are going through is what we live with daily, and is our reality. We have reactions to our reality and they are real and immediate, and sometimes overwhelming.
Burner--How does anyone know that they are feeling 150% than they would have if they never went through the whole bc thing? I know that now, 10 years out, I feel good, but I wonder how much better I would be feeling if I never had bc. Ah, well, something I'll never know.
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something I've noticed lately: I use humor to help me cope with all the bad stuff in life. So of course I'm going to joke about having cancer. But I've noticed some people can laugh along with me, and some give me a horrified shocked look, and make a comment to deflect the conversation, and I feel like an attention seeker for making the joke. Here's my discovery: I far prefer being with those people who can laugh along with me. I feel like they're learning to live with this unwelcome presence just like I am, while those who are shocked would rather pretend that the whole thing never happened.
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NativeMainer- good perspective, thank you. I love your avatar photo and that you feel great, 10 years out!
KB870- no need to feel guilty about having an easier time than anticipated with chemo. I understand why you might, though - you sound thoughtful and considerate of others.
It's like that "What it's like to go through cancer treatment" that someone posted a few pages back. No one wants to be fighting any kind of "mountain lion" (cancer).Herculesmulligan- I'm right there with you (when I'm not going through some enormous mood swing). Humor definitely has its place in the survivorship story, as does vulnerability, too.
Sending everyone some kindness over the 'net...
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I have a good one. A few weeks ago I was at a party. This man comes up to me who I have never met and interrupts my conversation. He then asks me, "do you know my daughter in law? She had breast cancer too." Yes, yes we all know each other and trade info at the monthly breast cancer meetings. That was so rude and insensitive. It's also nice to know I am now known as the girl with cancer.
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I visit here periodically, them feel horribly guilty because I was one of those hideous people who said to an acquaintance, "If one has to go through something as horrible as cancer, I guess perkier breasts are about the only consolation." I feel like an idiot now.
In my defense, I've been buxom since 9th grade and a 100+ pound weight loss left my still very large breasts hanging around my waist. I cancelled a planned BMX last minute because of worry about tissue expander issues plus I was extremely disappointed in viewing photos of the plastic surgeon's work for patients with a similar scenario. Now, I'm risking a delay in radiation to get reduction surgery and, in order for insurance to help with the cost, will likely end up much smaller than I would prefer with no knowledge of whether radiation will shrink my affected breast.This is such a good venue to vent, but I don't think most people intend to be rude or insensitive. Thank you for helping me be more aware of comments that might be hurtful.
Lyn
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just had to share my experiences.. after my BMX and reconstruction, whenever I would bump into a familiar face, automatically they would look at my chest and say, "how are you?" as if the girls could talk. Anyone else had this happen? Luckily I find it funny, and when I point to my eyes, and tell them that "I am fine," they immediately apologize and nervously laugh since they got caught! This goes for men and women alike. Im glad that I'm not so uptight about it, but I know that's some may take offense to it!
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Yay, Wallan, for following up. Just keep the documentation,that was a bad HR thing to say. Nobody should be comparing you to past employees! I have not worked since December 2016. Everyone says, " you did so well!" If I had worked through this, I would be a very unhealthy wreck.
Yay, LuLu22: you are right, when people compare it "minimizes the emotional toll battling cancer takes. No one wants to be told how to feel about their own disease or to be told that at least their crappy situation isn't as crappy as that of someone else." I am writing that down in my journal.
PS. Friend came and we had a good time. She said she needed to see me with her own eyes to know that I was okay.
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Decided to post my experience because I know you'll "get it"...I work in Hospital Pharmacy and rotate thru several different areas including the ER where we interview patients regarding their home meds before admission..this of course can involve being coughed or vomited on and/or exposure to things a breast cancer patient on chemo would best avoid.My boss has received all the necessary paperwork to document my need to avoid the ER shift from my ONC. The other day I expressed my concern about a co worker who was constantly late to work and how it was affecting the timeliness of patient care. His response to me ...after working with him for 12 years with excellent job reviews was..."How is John being late to work every day any different than you not being able to have patient contact due to your cancer?" REALLY?
I have been very upset about it ever since ...reported him to our Department Director who took it very seriously. I did get an apology...sort of...my boss said he was sorry...my BC wasn't a good analogy!
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Wow MN. If only we could control our cancer as easily as we can control our timeliness. Mine is not as insensitive but I just had my BMX 4 days ago. The aide came in to check my vitals and I was eating lemon ice as I was still on liquids after moving from recovery. She asked if she could take my temp under my arm since my mouth was cold. Ummm no! I was not letting her anywhere near my surgical area. Told her to wait a few minutes. This was after she dropped my wound vac power packs on my chest aftermy first trip to the bathroom. Could not wait for that shift to end.
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"The first step to beat cancer is to accept that it is just an illness, not a death sentence. You can be a victim of cancer or a survivor, with cancer it's all about your attitude."
The above is absolute proof of 2 things. 1. Some people just have no idea what stage IV means. 2. IMO cancer should not be a category in greeting cards.
The first sentence was the cover of a card I received today, the second sentence was printed inside the card. I appreciate you thought of me, I dont appreciate the message. I opened the card, read the message, grunted a few swear words, threw card in the fireplace, <sighs>.
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That's a terrible sentence, Freya. They have no clue.
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Freya your card has inspired me. I'm on my way in to work, and because of your card I'm going to approach it differently today. I'm going to tell all my diabetics to just work on their attitudes. Same with the folks losing vision to macular degeneration.......I'll just say it's up to them whether they go blind or not.
JUST KIDDING of course. What upsets me about that card is that it paints the burden of recovery as a voluntary thing. If you want to be well, you will be well. The catch is that, then, logically, if I don't get well I must have not wanted to, or not tried hard enough. Even before I got cancer I was bothered by that train of thought.
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Hercules, I agree totally. One of my pet peeves has always been the "she lost her battle with cancer", or "she fought hard" etc commentary. Dying from no other disease is ever described that way. It almost leaves a whisper of "she could have won if only she tried harder" lingering in the background. It was never a fair fight to start with.
Thanks Bikefam.
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I agree Freya. I once went to a cancer support group and was really put off by the "rah rah, a good attitude is everything" philosophy. The worst part of that meeting was that there was a woman there who was stage IV and quietly said that she was in her last few weeks of life. I hated that she had to hear from other people there that a good attitude had "saved" them! To me the implication was that she didn't try hard enough to have a good attitude. I know everyone there felt bad for her, but it was still kind of insulting in a way.
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I've been to too many memorial services for cancer patients who were positive and upbeat to buy into that line. I've always thought in terms of treating a disease rather than fighting an adversary. The depressing part was the thought that my doctors were selecting medications that were progressively harder and had increasingly debilitating side effects. Well-meaning acquaintances often ask how long I'll be on my current treatment and are left speechless to hear that I'll stay on it until it stops working or the side effects are too bad and then move on to something worse.
So I was pleasantly surprised to find that after two anti-hormonals (fairly easy) and two chemos (fairly unpleasant) I was on to a targeted drug combo with minimal side effects. Kisqali with letrozole is new enough that it doesn't come up in the bc.org list for treatments, but it's a real shock to be feeling better rather than worse after a progression. Of course, I have to wait for scans to know if it's working...
I'm even getting some hair back!
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One time when someone said the good attitude, stay positive thing to me I told them I have always been a positive, bright side person so why in the hell did I get it to begin with.
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Ugh. Freya. So with you. And there's this whole "try hard" thing that the world puts on women, so it's no wonder that the sentiment that you can beat this thing is out there. If only I tried hard enough, I would never have gotten bc! What?! I've been at the beach all week, and all I can do is look at women who have two breasts and wonder, how did this happen to me and not her? Though 1 in 8 of us will receive the dreaded diagnosis. So maybe there are fewer god-given boobs on the beach than I imagine.0
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Chicopeach57--what was the response?Hope it was funny.
Falconer--good question, I wonder how many beach boobs ARE unenhanced, unscarred, disease free perkinesses?
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Cemeteries are full of amazing, loving and positive women (and men).
There are so many "quotes" or commonly repeated phrases that just make no damned sense to me.
"Everything happens for a reason" - Tell me why
"God doesn't give you more than you can handle" - so God gave me cancer?
"Cancer is a gift, it makes you realise what is important" - I already knew, and it's not something you can regift!!
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Freya - I am with you. I am sorry you received that horrid card. I have never liked the whole "a good attitude is crucial to success" or "of all the cancers, breast cancer is not a bad one" or "you can beat this!" People don't realize how randomly insidious cancer can be.
My friend told me "God doesn't give you more than you can handle," and I rolled my eyes and said, "I don't believe in God, but I believe in health insurance, science, and my entire treatment team and support network, but thank you." Perhaps I was being too sassy, but this was after she said, "Did you gain weight? I thought chemo was supposed to make you lose weight?"
UGH! I wanted to punch her in the face.
Falconer- I do the same thing. I look at women now with full heads of hair, eyelashes/brows, and two natural breasts and sometimes audibly sigh given what I don't have. I don't even realize I'm sighing until my husband points it out.
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UGH! I wanted to punch her in the face.
Sometimes when I'm sitting quietly with someone, they might think I am listening, but the reality is I'm imagining punching them in the face. It is therapeutic
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Freya- lol!!!!! THAT is a good coping technique! I am putting that in my mental toolchest, thank you!!!
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Hi all! I'm new to this thread but I'm loving so much about it (& all of you)! One of my personal favorites came from a Breast Navigator at my hospital. I was in the middle of radiation (with the Savi) & she suggested I join her adult coloring class. (Say what?) I declined & told her I'd take a kickboxing session, if she had one!
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Hi and welcome JKL
We got given colouring books and pencils in the chemo room. It is supposed to be calming and relaxing. I have noticed lots of adult colouring books in bookshops over the last year. I managed about half a page before I lost interest. Some of the others seemed to enjoy it though.0 -
Yeah, i dont get the whole coloring book craze. A dear friend gave me one with some pencils during chemo. After an excruciatingly boring two hours of coloring I chucked that business. I'd rather watch paint dry.
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Hi Freya
I can imagine that coloring could be relaxing & I appreciated that this lovely young woman genuinely wanted to help me. But, at that particular moment, I wanted to hit something more than I wanted to relax. I was exhausted (not sleeping much), uncomfortable (my Savi was in an awkward location) & concerned (I had developed an allergic reaction to the antibiotic I was taking & was concerned about the possibility of infection now that I wasn't taking one). Everyone kept telling me that I was strong & that God would not give me more than I can handle & it was just not helping.A trainer at my gym rallied my spirits, though, when she informed me that if she ever got cancer she wanted breast cancer because it was so easy to cure. Made me feel much better.
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how's this one? My friend came up to visit me the other day and her mother in law had just died. She asked my husband and I if we wanted the hospital bed that she had just died in.....
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Artist, I'm speechless.
JKL, those last two sentences you wrote are priceless.
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I'm going to do myself some damage if I keep slapping my forehead, just when you think you've heard it all........speechless too!
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