The dumbest things people have said to you/about you
Comments
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Gritgirl: My radiated side was so tight that it was suggested doing massage therapy to loosen up before doing the diep. I do think it helped somewhat, but just can't get the tissue on that side under the burnt skin to look as full as the non-cancer side. And who'd a thunk I had different pigment on belly tissue than on breast. Although I don't walk around topless, would have been nice to hear ALL of the changes post-diep.
Glad you had a normal conversation from women at the dentist and could relate your experience. good for you
Shelly
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I think of those responses but never would have the guts to actually USE one. I come here and use them instead.
I was surprised at the color difference after the DIEP, too. And having stretch marks on my foobs is a little odd, especially the direction they go. And having to occasionally pluck a pubic hair off my boob is weird, too! I don't remember if I was told about that part or not. I did hear that DIEP was easier than TRAM and translated that to DIEP was an easy surgery in my mind. THAT was a BIG misunderstanding on my part! Still, I am very happy with the results, and thrilled to not have to wear a bra anymore! Just about the only good thing I got out of all this misery.
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Maybe we can start a list of thinkgs we got out of this misery. For me, it's been the ultimate courage to tell people to piss off (in a polite way). I don't have time for schmucks anymore.
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Native: do you also notice weird cramping in your abdomen muscles when you turn a certain way or pull yourself up after laying down? And for me, it seems like the whole tummy area has been moved up a couple of inches so public line is higher...nice right? not. I guess I shouldn't complain too much since this type of microsurgery wasn't even an option probably just a few years ago. Can I ask how many (or if) you went back for any cosmetic revision?
tks
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Shelly56-- I notice a tight or pulling sensation when I get up from sitting for a long time in certain chairs, like my rocker/recliner, but not when I've been sitting in an office chair. I think that is probably posture related. I don't notice it when I'm getting out of bed, but I think I still do the roll over on the side and pushup gradually thing that minimized the tummy pulling. I definitely notice the pulling after walking about a half mile. The back ache starts at that time too, so I know it's abd muscle weakness and the need to walk more and get them back in better shape (I was walking 3 miles most days of the week). I was VERY overweight at the time of my DIEP (BMI of 36, 232#, 5'4") and the fat was taken from that roll over my pubic area. So my pubic line doesn't seem any higher to me. My belly button seems higher, though, and just a little off center! Not that I really care. As to revision, I was very, very blessed and have not had any revision surgery. The shape and size of my breasts is delightful to me. I went from DDDD to probably a small C. I have chosen not to have nipples done as I am really enjoying going braless and don't see the need to deal with "headlights" again. Funny thing is that I still feel the nipple tightening sensation at times, and even look down to see if they are showing! It's funny, with all the scars the only one that I really notice or sometimes think about is the one across my belly and hips. Being so heavy that incision opened up and had to heal from the bottom up, so the scar is a bit wider than a typical surgical scar and more red than the others. Being historically obese and still overweight I don't wear clothes that show my belly, so it's really nothing for me to care about, but I do. But the breast scar on the left is slightly higher than on the right and does show a tiny bit when I wear certain v-neck tops, and that doesn't bother me at all. Funny how that works out, isn't it? I don't know much my not being involved romantically at the time of diagnosis, treatment, recon and after has influenced my choices. If I were in a committed relationship and my partner valued nipples, I might have had that done, I think, but since there is only myself to consider, I'm not bothering. And yes, 10 years ago, even 5 years ago DIEP wasn't even an option. For me, it wasn't an option available in my home state, I had to go to Boston for it. Worth it, though, as far as I am concerned. And while we feel we SHOULDN'T complain about such minor things, how 'about you and I agreeing to complain to each other? Just knowing that I am not the only one who is very grateful for what I have but still want to complain about some of the little details makes it easier to live with imperfection. Not that my body was perfect before bc, but . . .
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My boss (who is actually a really nice man but for some reason turned into Michael Scott when he found out I had BC) first thing he said was, "oh you must be so worried you're going to die and your husband will marry a younger woman" and that was shortly followed by interrupting me when I was saying it was actually a blessing with, "Why because you are going to die and go to heaven?" (Umm no I was going to say it was a blessing because it was caught so early!) and lastly when I told him I was having a double masectomy he said, "oh no, that's like a man cutting off his penis!" LOL seriously my husband and I have cracked up several times at his inappropriate remarks.
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mepic - OMG - all those from one guy! You must be a very kind and understanding person. I would not have been so understanding. (I do understand, however, that he is your boss, so it's prob. easier to just let it go...sorry you had to endure his crude comments)
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Tell him you are going to out live him
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Good one, gritgirl!
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mepic,
You could tell him that after your BMX you will still have your brain...the man without the penis???
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Actually, tell him you have a friend with stage iv who will outlive him too. I need more goals to reach for.
And also tell him that hope he doesn't get cancer of the penis because then he'd die of it since he's unwilling to cut it off.0 -
Gosh mepic, that boss of yours just opened his mouth to change feet!
gritgirl, you have a great sense of humor, and a wonderful turn of phrase. I really enjoy reading your posts.
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Native: I have since asked my PS and he thinks the cramping is scar tissue, which I guess makes sense. I didn't do nips either and glad I don't ever have anyone ask "is it cold in here" ?? HAA HA - I don't go "bra-less" even though I probably could, but am seriously considering another revision this year -- just to take some fat off one side to even out. I was only a "B" cup before diep, but am VERY much a C or D now. Have also noticed now have to buy bigger blouses/tops. I have to be careful wearing my halter top swimsuit too, since it shows the scar somewhat close to midline on my chest. GRRRR I think at this point I don't care though. When your abd scar opened up were you taken into surgery to redo at that time? I'm glad you like your "shape" also. Yep I am amazed at what they can do nowadays, but also am one of these people that want "perfection" or as close to it as possible!!
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Shelly: Have you checked into physical therapy? I see a physical therapist who does deep tissue and myofascial release. I was in excruciating muscle pain before that.For me, I'm just grateful to have the breast tissue gone and to be alive, even if I do have scars. :-)
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Shelly--No, I didn't go back to surgery to close up the part the opened, I did dressings and it healed from the bottom up. That's why the scar is wider in that area. I went from very large to much smaller in size, and love not having to by big tops that would fit the shoulders and boobs and hang like a bag on the rest of me. I could have revision surgery to minimize that part of the scar, but I just don't care about it enough to warrant another surgery.
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Gritgirl: Before the diep, I did a few months of massage therapy to loosen up the lumps under the arm and stretch the tissue. I really felt good after those sessions but noticed somewhat went back to being tight - not completely though. Still lumpy but have bought a door gym (similar to 'pull-up' bar) and I hang from that once in a while like a bat-- lol. It was recommended by my PS but I should do it all the time and don't. I also go for massage once in a while, but that is mainly for neck and back tension, because I sit all day for my job and it creates some of that.
Native: You went smaller on top & I went much bigger. What size tops do you wear now? I was always medium or like size 12 but now into large, extra large.
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Shelly--I went from 1x, 2x to large tops, can even get into a 16 or 18 if the cut is right. Of course, the tummy fat does make a difference in the fit, too! I had always wanted a breast reduction but could never afford it. It's the only good thing I've gotten out of this bc crap thing.
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Reality...has anyone else been triggered by this Angelina Jolie stuff? People keep saying "well, if I knew I had the gene, I would have a double mastectomy too" and "if I had a diagnosis of breast cancer, I'd..." implying what? That I was an idiot for having 'only' a lumpectomy and radiation...I just about lost my mind on someone last week...first time in over a year I have felt like that. I wanted to say " How do YOU know what you would do? you don't have cancer or the gene....you CANNOT predict or say what you would do in that situation because you are not in that situation...and it somehow demeans those of us whohave made life-saving decisions already"...then i went home and cried and decided I was being too darn sensitive..that any exposure regarding breast cancer and possible treatments is good for survivors...but boy...it made me mad.
The other thing that has been said to me in the past 6 months that sent shock waves through me was being introduced to Terry Fox's sister as "one of Terry's team" (when I didn't know that anyone at the school knew...I certainly had not told the person who "outed" me!) and then the comment " but you are here now making the big bucks and so you can forget about all of that now"....I smirked in shock....I know the person who said it did not mean anything mean...she meant 'it is all over now and you are living your life' but....ow...
ah well..just needed to verbalize that
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"well, if I knew I had the gene, I would have a double mastectomy too"
When will you get your BRCA test results? You haven't been tested yet? Oh, so when is your testing appointment? You don't have an appointment yet? Why not? Don't you want to get this info so you can have the mastectomy as soon as possible to protect yourself? Or do you have to save up the $3600 testing fee and $30000 surgery and hospital cost first?
"if I had a diagnosis of breast cancer, I'd..."
Wow, you're really prepared to know that your insurance will cover that and to have done all that research ahead of time. What are you plans if you have a heart attack? Do you have your knee and hip replacements all planned out too? How did you find out ahead of time what medical emergencies to plan for?
Yeah, it irritates me quite a bit. I try to keep my mouth shut, but my mind keeps going!
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Two weeks ago, one day before my 12th & final Taxol, I went to the podiatrist. I thought he would remove my two large toenails. They were loose, had some seepage and odor. He actually used clippers to cut them all the way to the quick with No anesthesia. He bandaged them, and even though he knew my WBC was low and I was in chemo, he didn't give me antibiotics.
Later that same day DH wanted me to go with him to take our daschund, Gus, to the dog park. We took a light lunch & sodas and our books, and agreed I would sit in the van and read while he played ball with the dog.
As soon as we ate he wanted me to get out with him. My nose started to bleed heavily out of both nostrils. I had a few napkins, so I rolled up little pieces of it and inserted it into my nose to staunch the flow. I got into the dog park and one of my toe bandages came off.
Now, I look like a walrus with tissue sticking out of both sides of my nose, toes hurt and one is now unbandaged & vulnerable, walking with my cane, fully fatigued from almost 6 months of chemo.
As soon as reach DH & Gus another man there with his dog strikes up a conversation with DH. They talked the whole time, while I'm thinking, " I could be comfortable in the van reading my book. "
When we started to go back to the van, I was maybe 10 feet behind DH. He turned to me and said, " Come on Paula, its only like 50 feet. ( more like 150 feet over rough terrain for me). I said, " This from a guy who hasn't gone through 6 months of chemo, had toe surgery this morning, and has blood pouring from their face!!! "
I really wanted to thrash him with my cane!
Paula0 -
Paula--have your DH do the same 30 minutes after a vasectomy and see what he says!
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NativeMaine~~I'm 62, so we are a bit old for a vastectomy, but this was from a guy who has to spend 3 days in bed with sniffles or a headache. Lol.
Paula0 -
thanks Native Mainer - good to know I am not being too sensitive...it has driven me nuts!
Paula - good grief....hope you are feeling better now:)
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I am in a relationship with someone who is supportive, but also kind of in denial. I am stage 3C or maybe 4, they can't decide because they are not sure about a suspicious area in my skull. I am 53 years old this week and have had a pretty rigorous time with chemo, hate not being able to be as active as I am used to, and trying to gear up mentally for surgery, radiation, etc. Of course it could be worse, but it could be a hell of a lot better, too. My partner's family is friendly including his first wife, who I see at social events. However she pins me down and wants to talk in detail about my cancer, whjich I would rather not do - then declares "You'll be fine." His son does the same thing - family trait I guess, version of the hearty slap on the back. Also, when I have had side effects, she has declared "that's NOTHING!" and then told me about some one else she knows who threw up their insides, etc. My hand foot syndrome from A-C and severe pain from Taxol are not "nothing," and the reality of my fairly advanced diagnosis and prognosis are hard enough without this sort of remark. What am I supposed to say? I have been avoiding these events lately.
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Andrea, I can relate to the "you'll be fine" remark. So dismissive. Bugs the heck out of me.
What I've started doing when someone brings up the cancer topic is straight up tell them "that topic is off limits today." and try to change the subject. If they keep on with it, I just walk away from them. So far, it has only taken once for my family and friends to figure out I'm not kidding. I will not talk about it at family get togethers, in front of my kids or in the middle of the friggin grocery store of all places.
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My employer's mother actually decided to talk about my cancer to others, of course, without my permission and of course, NOT THINKING that I may not feel comfortable with that. I told my boss it was private and not to put it out there, but I guess it's just too juicy a subject not to.
Andrea - I don't know how you are able to face your partner's ex-wife about this. That would be too weird but perhaps she feels comfortable with you from before.
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Shelly56--your employer's mom talking about your cancer is a clear civil rights violation. You could pursue it if you wanted to. Or maybe if you point out to your employer that you could, he would smarten up about gossiping with his mom. . . .
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Thanks to all who made supportive comments! I do not really have a support group where I am, but these discussion boards are great. Best to all of you and I hope you can keep up the moxie and humor as you deal with everything.
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Native: I'll check into it, but my employer is a personal injury attorney, so if she violated some civil right, I would think he wouldn't have told her in the first place. But then again you never know.
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Shelly,
I don't believe she violated your civil rights. She did, however, break confidentiality disclosing your private health information. And this is a clear violation of HIPPA. There are strict rules as to who and what information may and may not be disclosed. There are penalties for disclosing an employee's private health information. Cannot imagine his mother qualifies as someone on a 'need to know' basis in the law firm.0
