The dumbest things people have said to you/about you
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Wanderweg--The whole "fighting cancer" thing drives me crazy. While in treatment, we are "fighting hard." When treatment doesn't work anymore and we focus on comfort and dignity we have "given up." When we die we have "lost the battle." Ah, NO. Not true. Medicine is failing US. Treatments aren't effective sometimes, or not effective enough or too toxic to survive. Comfort care when treatments don't work anymore is addressing the pain and other problems caused by ineffective or failed treatment. Death occurs when treatment fails or from the aftereffects of treatment. It has NOTHING to do with my ability to "fight" cancer.
Sorry for the rant, that just hit me so wrong this morning.
Seachain--I do hope those skeeters died, or had mutant baby skeeters after biting your head!
WC3--That's one way to kill house flies! I find it funny that they tell us not to dispose of unused drugs by flushing because most municipal water treatment plants do not address drugs, yet the same drugs are excreted in our urine and poop, and goes, guess where? Municipal treatment plants that don't address drugs!
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The thing that's getting under my skin these days is people telling me "Well, you LOOK good!". Usually it goes like:
Them: How are you doing?
Me: Honestly, I'm really tired and the nausea is making it hard to not to lose weight.
Them: Well, you LOOK good!
I think it's annoying because, after asking about me, they totally invalidate what I just told them about how I'm actually feeling. It's almost as if feeling crappy is of secondary importance because, hey, my skin isn't like parchment and my color is something other than grey. After all, it is better to look good than to feel good, darling!
I recently had someone actually respond, "Yeah - you kinda look like crap" and I could have hugged them for their honesty! (This is someone I'm very close to, a person who'd go all out for for me, if you know what I mean.) Rather than be insulted, I felt like they heard me that I don't really feel all that great at the moment.
I think it also creates an expectation that I maintain appearances and not make someone uncomfortable with my illness. Look - we all have our own lives and I don't need everyone else to live my experience 24/7. However, I'm not really in a position to be the supportive one right now and if my cancer makes someone uncomfortable, that's ok - we can avoid each other for the time being until I'm not so "awkward"! Just don't expect me to the be the one to pony up extra emotional support because my cancer makes them uneasy.
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Native - I hate the fighting imagery, too. I figure I'm getting the best care they've got so far (and hope better things are in the pipeline) and if I die it's not because I didn't fight but because cancer is an often-lethal disease.
kber - I got a lot of "you look good" comments while I was in chemo. I know people are trying to be encouraging but it did feel like it really minimized what I was going through.
So today a new patient asked, "Why'd you cut off all your hair?" -_-
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Kber--you hit the nail on the head, we spend a lot of time making other people feel better about what WE are going through. So not right, but there it is.
Wanderweg--how'd you answer the question about your hair?
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Lost hair during chemo. It grew back very slowly and much thinner. When there was enough to color and trim I returned to my long time hairdresser (is that the term?). I told him that I was on a long term med (letrozole) that would likely make my hair thinner the longer I took it. Well that happened and every month when I went back I mentioned the thinning aspect. I am a private person and it was hard for me to keep bringing this up because of course others in the shop could hear me. But I wanted him to trim my hair going forward so that as much balding as possible could be covered. I got the feeling that he was ignoring that and trying to shape my hair for a medium haircut that I knew would not work with super thin hair. So last time I said more vehemently that I was getting balder and needed a layered cut that could be "tousled" to cover the bare areas. He said in a somewhat irritated tone "you should go to the doctor and see what is causing this baldness." I wish I had said something like "Wow, that is so insensitive after a year of my discussing this with you, I don't know what to say". But I just explained it for the 10th time or whatever. I have decided to let him keep coloring my hair but go to a woman hairdresser who cuts many men's hair and see what she can do with the cuts going forward.
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Polly--SMH. Why don't people listen?
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Because it's not about themselves. Bellybutton of the Universe and all that.
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I agree enough with the buzz word “fight” for BC or even she lost the fight. fight, etc. I’m not trying to be insensitive but enough with thatword. Newsflash we don’t have control over the outcome whether we fight or not. That word along with all the pink crap is so annoying. As if being a cheerleader has a scintilla to do with the outcome.
How about getting serious about this insidious disease and focusing on ladies who can’t afford treatment or ones who are financially wiped out from medical bills.
I will end with a vent I have about an Xneighbor otherwise known as the town crier. She told anyone who would listen about my breast cancer. I didn’t think I had to tell her not to spread the word but apparently I should have. It was my story to tell.
Diane
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The hair dresser might just have been the kind of person who needs people to be more direct in what they want. I can be like that. I was once scheduled to take an exam at a testing center. I hadn't finished reviewing my notes and figured I would rather finish reviewing my notes and be a little late at the cost of some exam time so I sat down on a bench outside and started reviewing. The instructor happened by and told me "I think you should start your exam now," and I told him "I will in a few minutes." We went back and forth like this a few times before I realized what he meant was " Go start your exam now."
I can't see between the lines very well sometimes.
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NativeMainer:
My mother means well, she just completely butchers the phrasing sometimes.
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This lost the fight thing ... it makes me shake my head. If you die in a car crash, did you lose the fight with a vehicle? If you die falling down the stairs, did you lose the fight with the stairway? After choking to death on a hotdog, do you read in someone's obituary "Herman was a long time resident and handyman and made terrible beer in his basement. After a long relationship with barbecued food he finally lost the fight to a processed tubular shaped meat item. " No. Not even if you die of old age do they say you lost the fight with eternity. But cancer? Oh that's a full on David and Goliath type battle and let's all get our popcorn and gather round, place bets maybe, who will win the fight?! Oh my god, it's a real cliff hanger!
Even if you 'win the fight' you still walk around marked and dented. And while you get back to a life that LOOKS the same (oh you look so well!) it is NOT the same, not in any way. You are different. Forever. And in that way I think cancer ALWAYS wins. It's a dormant parasite egg waiting to spring up at any moment and if you are lucky enough to forget that, then you are lucky and it is a blessing ... until that knowledge / thought / reality pops back into your head and you're like, was having a good day, was thinking about other stuff and now, oh shit. When people ask me how I'm doing I often say, "Good. For now." Which is the total truth. It is a bit uncomfortable for them to hear. I get that. It's uncomfortable for me to live. But I do. While looking absolutely normal.
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Runor, you made my day with that fight paragraph. I told my family if anyone says I lost a battle I will come back to haunt them.
My kind oncologist is allowed to say, as she does every appointment, “You look great!" Because that is her professional assessment. When I was on Taxol someone said I looked good and I replied, “I look like hell, but thank you." But another evening when I had done my makeup and put on a very attractive chemo cap (That's a very attractive housecoat, Mrs. Lupner. Oh, Tad!) a friend spontaneously and sincerely exclaimed, “You look beautiful!" That was nice.
Recent comments: “When you get a smaller house, you won't need a house cleaner." Um, what part of tired from chemo and not keeping up did you not understand? And “Your place looks so good now you're not gonna wanna move, he he he!" Well, I don't want to move. Cancer costs and other family health issues have made it so I have to leave the home I love. Thanks, buddy.
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runor ~ Your first paragraph was so brilliant. I want to place it verbatim over an image of a boxing ring and share it around the interwebs!
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My breast cancer was on a tussle level. Endometrial cancer was my first, so more of a sneaky mugging. Mohs surgery for a largish basal cell carcinoma on my face was a switchblade slash. The radical nephrectomy for kidney cancer was a gang attack in an alley. I was a passive participant in all of these. The only fighting I did was when I had a hip replacement, because the physical therapy took a lot of effort. So I guess I'm a hip survivor!
I don't really worry much about recurrences. Random new cancers, a little, but until I run out of body parts, I'll just get them taken care of like I did with the others. I've dodged chemo each time and I'm done with radiation, so except for spending a few hours here and there in Scanville or Mammogrammoramaland in the future, I have no reason to let it be a lurking buzzard on my shoulder. One and done each time for me.
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BA HA HA Alice, I just had a picture of you dressed in a pirate costume, a stuffed buzzard on your shoulder bouncing wildly as you dance to mammo-grammo-ramma-lamma ding dong ! Oh god, now I need a drink!
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runor - Totally with you both on your hilarious description of “losing the fight” and also the paragraph of how you are forever changed. Sometimes I want t shake people and say, ‘“I have a disease that wants me dead - don’t you get that?”
I’m schedueld to meet up with a couple of friends this weekend, both of whole were huge supports throughout my treatment. One is a newer friend who had breast cancer herself a few years ago. The other I’ve known for 25 years and who is one of my closest friends. She has a heart of gold and I know she meant well, but when she asked (by text) why I still had my port, I told her they keep them for a little while in case the cancer comes back quickly. She texted back, “ Well that won't apply to you. That's HISTORY! “ and I just cringed. My response was, “Well. It makes me a little crazy to think of it that way. I'm a realist and know my odds.” No reply to that. So now I’m struggling with whether to just let that go or to try to explain in person why that sort of thing feels like it invalidates the reality of my experience
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Let it go wanderweg. She means well. 25 years has to mean something.
Diane
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edwards - I believe honesty makes friendships deeper. And if I just "let it go," it will happen again. If I said something to a good friend that was hurtful to them, I'd sure want to know. I'd want them to tell me kindly, but I'd still want to know. Maybe this is an opportunity for her to learn something about how cancer works.
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Runor--YES!! Very well put! May I quote the first paragraph on Facebook? I would say it is from a friend, would not use your screen name or name the site, or even mention breast cancer specifically.
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runor, your rant has struck a nerve! Very true!
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wanderweg, as someone who often inadvertently puts foot in mouth, I would want to know from a 25-year friend that I had said something hurtful and why, so I could avoid doing it again with someone else. And so I could truly understand and apologize to my dear friend. For an acquaintance, it's not worth the effort, but a true friend would want to understand why her comments stung. A fellow breast cancer sister and dear friend said, "You've got this!" and it meant something very different and affirming than the same comment made by someone who has not experienced this disease. I knew exactly what she meant, and it was not an empty platitude.
Runor, I love your writing and you so eloquently said it all. Whatever my good prognosis and the "odds" being in my favor, I know that it can come back, no matter what I do. Cancer took my half-full glass and stomped it into shards that cut off my breasts. I won't let it ruin the rest of my life and steal my happiness, but if people act like it was no big deal, I beg to differ.
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It's so true that the same comment from someone who knows you well and someone who doesn't can come across so differently. My mom called me a few days after I told her about my diagnosis to apologize for "doing and saying everything wrong". She had done research on how to support a loved one and what to say and not to say and was horrified that, in her opinion, she had said all the wrong things.
Thing is, I had found our conversation 100% comforting and affirming and supportive because she knows me so well and I know where she's coming from. It never even crossed my mind to be upset. However, I've fielded the exact same comments from people I am not as close to and came out feeling unheard, deflated or annoyed. It's a minefield to be sure.
Maybe the take-away is don't assume familiarity that doesn't exist. And from my end, focus on the intent.
For a few close friends and family members, I have had some gentle conversations about how their words have been less than beneficial. It's been OK because I know they love me and would never hurt me intentionally. (Just had one about "being strong and brave" last night, in fact.) For those further from the center, I'm pretty good at shrugging stuff off. However, I have a pretty warped sense of humor and have a lot of practice with the eye roll. Some of the comments in this thread are pretty funny, if you have a dark sense of humor like I do.
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I have only enough energy to say I love the brilliant women on this thread.
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I appreciate the thoughts on my dilemma with my friend, which helped to clarify for me that I value her enough to talk to her about it, in a loving way. As I would want her to do with me. (And I definitely don't bother with aquaintances - I just shrug that off because they don't matter to me much.)
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In the series this thread was titled for:
Neighbor about my age "I'm gonna nag my hubby to get me a pair of those fake implants to make me perky!"
She couldn't understand why I busted out laughing.
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Wanderweg, I know that you've read a lot of good advice already. If I may add my two bits ... friends of 25 years are mortified at the thought of losing you. It's an idea they do not want to wrap their head around. They want you to live and be well and wear your bikini to a beach again and they wad those good wishes up into some positive. affirming, slug- to- the -shoulder phrase and hurl it at you. It hits you on the forehead leaving you with a bump and a bruise. It was aimed at your heart where it was meant to blossom into a flower of love and hope and support and healing and please don't get cancer and leave me cause I need you around, you old bat. Message; good, aim; rotten.
I know when a person means well and is floundering for the right words. I have floundered myself and often still do. Then there are those who flip those words off to shut you down, shut you out and move on to other topics. The thing is, you KNOW the difference because being hit in the eye with a ball of love or hit in the eye with a ball of ignorance is two different things. You get a black eye either way, maybe, but it will, as you have pointed out, certainly influence how you deal with it. People have bad aim with good intentions. It happens.
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runor~ Between your wisdom here and and your insights on other threads I have bumped into you on, may I say: Start a blog! I will be your first follower. You have a way with words.
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he sounds like an insensitive jerk. Find someone else that is compassionate and human
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runor - I understand what you’re saying, but that actually doesn’t sound much like my friend. It’s more a power of positive thinking approach - if you say it won’t halpen, it won’t happen. And I never suggested her intentions weren’t good - I was only saying I vascillated briefly about whether to explain to her why that’s not helpful. I know her well enough to know she’d welcome the discussion
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Wanderweg, ah, that ever so sneaky denial of reality disguised as the politically correct 'power or positivity'. I get it. I have railed before against what I call Pointless Positivity. If your friend is in denial then I agree, she needs to know that the pleasure of denial and deferred thoughts of mortality have been taken away from you. You have been hit between the eyes with a hard dose of reality. She may indeed need to be clued in.
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