Lets do a Sh*t People say to Metastatic BC Patients
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What??? Smoking causes head scarf wearing? The things you learn on this forum!
Caryn0 -
I think one that bothers me alot is ---U look so good----I do own a mirror and since my color has a different tone now I have a hard time putting makeup on that doesn't look clowny--I wear no makeup to any Drs. appts. cuz they want to always see me color??? and then order ceetain tests what I'm low on. anyway I have dry patches on my skin (never had them) I've got this big old belly with no boobs--so really I know. And there is more LOL So they never said that before, why now?
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Toting around a load of ascites - just waiting for someone to ask when I'm due.... Hmmmm whack em or smile? Hard call on steroids!
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Another guy said to me ( again when I was wearing a scarf) "what kind of a crazy haircut you got under there? It makes you look like you're bald!"
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What really ticks me off is people complaining about getting old. I was sitting next to a lady in the lab the other day and she was complaining because it was her birthday and she's getting old, getting fat and getting wrinkles (she was about 50) .... REALLY? I wanted to say "Well at least you ARE getting old, I probably won't get the chance! I CELEBRATE each Birthday!" People don't realize how lucky they are. If I had the chance to see my 18 year son get married and have children, I wouldn't care what I looked like.
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An old friend from high school was telling me all about a bad tooth, crown or permanent replacement, cost, etc. He asks "How's the wife and kids?" So I tell him Stage IV breast cancer.
He's a good guy and I felt a little bad about hitting him with a club like that but he asked.
Lots of laughs and WTF's. Way to go Fitz.
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My fav is when former BF says "but you're lucky cause you know you have cancer, I don't know what's wrong with me..." Btw, I strongly suspect he suffers from panic attacks.
That and the abuse of positivity, if we were all positive, this wouldn't be happening to us. Read "Bright Sided" by Barbara Ehrenreich. She nails it.
I must admit that I thought everyone got cured from BC too, the pink stuff is so misleading.
Great topic! Hope you'll post the link.
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when I first did chemo and lost my hair.. I was wearing this awful wig for the first time. I played the organ for services and the church is a circle and everyone can see the organ, right next to the altar, kind of.
Pat, was/is an Irish drunk, a gorgeous sounding tenor who sang in my choir and was getting Alzheimer's. He had quit singing a couple years before, but we were still friends. He walked by the organ, grabbed my wig and started running. Everyone gasped and looked at me. They grabbed Pat and brought the wig back which i put on after the song. I had to Keep playing. Never wore the wig again. I am a scarf gal.. I forgave Pat, because well, he was just old Pat. I still like Pat.
My dad died of Alzheimer's. Oddly, Pat is the uncle or maybe Dad, of Theresa, the woman who made the comment.
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I did cry.. right then and there. I didn't want everyone to know I had cancer, altho church congregations are the biggest grapevines ever and it is only a small amount of time before everyone knows anyway.
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As I'm reading all of this I relate so well--I'm sorry u all felt so sad or embarrased--it's bad enough what we're all going thru without outside awful feelings when we are just trying to live a normal???life as we can.
I suffer from extreme sarcasm and when I write it it comes off bad---but it's how I say it that makes a difference---U can tell someone where to go, but if u put the right twist on it they actually smile.
And the baldness has no dobt happened in one way or another to all of us and even thos we're trying to cover up everyone knows and now a days I think everyone should be totally informed of this, but they're not.--I have complimented complete strangers when I think something looks good, but I have never asked about something personal--I don't get it.
And I am thankful for every year that I have with my family and friends (they miht not be) I do wsh I felt like I used to with some energy and no pain, just to be able to do more, but that's the way it goes for now and sometimes I wish I typed better but u uys have to put up with that not me.
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BIL did'nt want to use my pillow while I was on chemo. Thought the possibility of chemo could have rubbed off on my pillow and made his hair fall out.
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Anne45,
You have to be kidding! What on earth would make him think that ?
Caryn0 -
A group of friends (some better than others) that I used to hang out with; we'd all go bowling, the local tavern or dinner together had decided to do a small fund raiser for me when I was first dx'd (stage IV from the get go) to help cover all those co-pays. One of the gentlemen of our group promptly informed me that he wanted his $1.00 back when I got better! WTF!!! Gave him his dollar back right then and there.
DD's FIL would come to my house twice a week with cancer books; and yes Suzanne Sommers was among them. He would also go on and on about PH levels and the benefits of lemon and asparagus. Oh and my own MIL the power of her prayer group! Nope not working out so well for me folks!
Edie
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ANN---that's one of the funniest things anyone said or thought--I would have been laughing right to his face. was he for real???
He's an adult??? is he ond meds??? That is hysterical. Next time u see him give him a mask so he'll feel more comfortable.
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Probably the worst from DH.."Don't worry Terry, I'm not going to let anything happen to you". Poor thing..He just doesn't get it.
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Oh that is so sweet---tho u'r right he doesn't get it--but his heart is in the right place.
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Some people are just plain stupid, but I think for some, these comments are coping mechanisms. DH will give me the "you're going to be OK" line sometimes. I know he knows better, but he just can't think otherwise. I just hug him and fight back tears.
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I was in TJ Maxx last summer and i was wearing a cap instead of my wig. I passed by this little girl - maybe 7 or 8 - and all of a sudden I heard, in her loudest stage voice, "mommy, mommy, I know why that lady is wearing a hat...she doesn't have any hair!!!" Well, I couldn't help laughing and thinking to myself how this poor little urchin was going to get a scolding from her mother for voicing observations like that in public...lol!
Anne - wow, that is really incredible!
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Best one was this week stated to me by a psych Dr. tx'ing my DS in a mental facility...
Dr: "You look wonderful and very strong are you positive you've given us the correct information on your health?? "When your son becomes clear he seems quite confident you may live for several years or more but that your cancer isnt curable"!!
Me: "Sir i've got tumors in my bones from skull to toes and also throughout my liver and am stage IV.. Unless you have a cure for that im afraid my DS is 100% correct"
Of course you should've seen his face.. Was soo mad as he asked me sternly as if there were some mistake in the paperwork
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My sister just said I'm the strongest person she knows. I had to say it doesn't matter how strong I am - I'm still gonna die.
Why don't they get it?0 -
Reesie, maybe people who love you, like your sister, just don't want to get it. The river Denial is wide and deep.
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"Have you heard of the Gerson Therapy, coffee enemas? I decided that if I ever got cancer I'd try that. Either that or mushrooms. Have you tried mushrooms?"
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My gram, love her to pieces, but ugh. She insists her cancer is the same as mine. She had cancerous cells and had to have a hysterectomy. No rads, no chemo, no pills forever. Surgery and she was all good to go. Surgery at 65 or so, her uterus was done doing what it was meant to do.
She is going senile, so I try to just let her ramble about it, but some days it is so hard not to just freak out on her. She tells me how she went through the same thing and understands totally how I'm feeling. Then in the next breath she will tell me that since I had surgery I don't have to do anything else, because look at her, 20 years later and shes still here so that's how it works!
Just makes me want to bang my head on the wall.
Oh, and walnuts, she told me I have to eat walnuts, they will cure me.
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The one I love is....You just have to think POSITIVE!!! I told one old guy that "the cemetary is full of positive thinkers.". He was shocked, but I was sick and tired of that crap.
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I am super positive, I love mushrooms and walnuts, coffee too though not as an enema. Why do I still have cancer? My daughter was cutting up vegetables for dinner and asked me if she should use the green onions that were in the fridge. Of course I told her. Why not? She said she wanted to make sure I hadn't planned to use them for something else. Oh wait, I was going to light the ends and wave them over my head. It cures cancer you know. Caryn
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Sorry if I'm over posting here but just remembered...when I was first diagnosed a coworker of mine said "now you can get pot legally! Lucky!"
So stupid. Especially since maybe I'm a geek but I've never smoked pot. Legally or otherwise. These are the same people who think "free implants." Yeah, they're totally worth having cancer for....NOT!!0 -
Isn't it awful that we have to argue with people about our disease and that we are going to die? Isn't it enough that we have to face it, without everybody else not believing us too? It's just awful. That's why I like my Stage IV sisters - at least you all understand. We know we are dying and don't have long and nobody tries to talk us out of it.
For the daughter who posted, of course you want to believe you mom is going to live a long time. But, she likely won't. Don't know her stats but most of us don't live past five years. So, don't talk her out of what she knows is true, just enjoy her while you have her. People are so afraid of death in this society....
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When I was getting my hair cut a month ago, my hair stylist (whom I won't be seeing for a while because I'm now losing my hair for the second time) told me about shaving the heads of three women who were getting solidarity shaves for their friend who was getting chemo. She thought that was so amazing. And that is a pretty big deal for most women to do. I don't think I'd offer to do that (for other reasons). The solidarity shave has always bothered me. It seems like another way for people to say, "Now I know how you feel!" Somehow it makes it about them--makes them heroic and shines a bright beam on their sacrifice. It also seems to perpetuate the myth that hair loss is the worst part of treatment. When, in fact, hair loss is probably the easiest. A bald head is pretty easy to deal with. I didn't have any scalp pain. I opted for scarves over itchy wigs, so that was easy. Yeah, sometimes they got hot or annoying. I cut 30 minutes out of getting ready in the morning. I saved hundreds of dollars for not needing cuts and color (oh, yeah, I did spend a bunch on scarves though). Admittedly, it's not fun. I didn't feel pretty. I looked like a patient. What's worst is that it makes others uncomfortable and prompts them to say awkward things or, the absolute worst, compels them to give the pity smile, which is sooooo patronizing. I've always been the contrarian (which I'm sure caused my cancer!), and that's what makes me want to say, "A real act of solidarity would be if they cut off a good half pound of breast tissue or at least a nipple and then didn't tell anyone except the friend with cancer."
Tangent alert. Here is a tip FO ANYONE NEEDING SCARF IDEAS. This will sound like a paid endorsement, but it's not. When I lost my hair, I relied almost exclusively on Buff scarves. These are found at REI (http://www.rei.com/product/691367/buff-original-buff) and are about $20 each. They are stretchy and cylincrical--about an 18-inch-long tube--that can be worn numerous ways and come in all kinds of fun patterns and colors. They're made for outdoorsy use around necks or under helmets and can be worn about 10 ways. I wore mine like a do-rag or pirate and then when hair started growing back and was all zany, I wore it like a headband or half-head covering. They made me feel like I had a party going on on top of my head instead of like I should try to fly under the radar like a depressed babushka. So, they're all washed and ready to roll for round 2.
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Surly,
So well said.....
*susan*
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