Lets do a Sh*t People say to Metastatic BC Patients
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I laugh at that, what happens when she ends up with a chemo that doesn't have hair loss as a SE. Wouldn't that suck!
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I think a video would be great!
I also think it would be awesome if all of us living with stage Iv breast cancer could put out a book, or even a pamphlet, with ways loved ones can help support us...and what they do or say, however well meaning, that is not supportive. Who knows better than us what that is? And it sounds like all of us have stories or examples of what not to do or say...and we all know what we wish people could understand about our diagnosis. I just think it would be so interesting to do some type of writing on that from our perspectives. That we and other women like us could pass along to inept family members...with relevant portions highlighted, lol.
Anyone know hOw to get a book deal? ( ;0 -
Hi all thought you may be interested in contributing to this thread. Sassy
http://community.breastcancer.org/forum/102/topic/791442?page=1
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Surly good post.
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OMG EnglishMajor love it!!!!!!!!!!!!!
Surly I can't thank you enough for the scarf recommendation. Your timing is spot on and I hate wigs. Never been happy with my scarves so truly...thanks!!!
Coolbreeze you bring up a fantastic issue--fear of death. I work with elderly people so even though we are having a rocking good time usually it's an inevitable issue.
I get a lot of wisdom from them in terms of their views on death and life and it's a great comfort.
To the woman posting about her mom I would say how terribly sorry I am. I'm not qualified to give advice but I can tell you what my old ladies tell me: don't let your fear of death ruin your enjoyment of the life you have left. Every minute is a blessing. It's ok to feel like, "I'm just happy to be here!" Sometimes that's enough.0 -
Kohl's check out sales clerk to me "But how did you get it?" It being stage four/terminal BC" I wanted to reply at a Kohl's power hour sale or would you like to shake my hand and I can give it to you "cancer being such a gift"; but I restrained myself and replied "thru the lottery of life"
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My 5 yr DS asked that question, but thought you might get it if I coughed or we drank from the same cup, etc. I wonder how long my poor little guy worried about getting it himself.
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Spamgirl,
Kids have such limited life experience. When something new crops up, like bc, they really have no framework for understanding so they fit it into what the do know. Sickness, to them is a cold or a tummy ache. They know that germs for these illnesses can be passed around, so that's the only perspective they have on illness. I am an elementary school teacher and a mom. I have seen kids come to all kinds of interesting conclusions on illness, death, divorce etc. It's endlessly fascinating, sometimes funny, sometimes sad. That's why telling them the truth, in an age appropriate way, is so important. Caryn0 -
I felt do bad that it never occurred to me that he would be concerned about that. We've been very honest with what's going on. But I expect a Kohls store clerk to understand more than my 5 yr old.
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Don't feel bad! Now you have a chance to help him learn that not all illnesses are contagious. As for the Kohl's clerk...service personnel should be trained to stay away fom personal questions! Ask about the weather, the Olympics etc.
Caryn0 -
Penny4cats, I love your answer to the Kohl's clerk - even though she was extremely rude for asking.
Leah
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@ Exbrnxgrl & Camillegal my brother in law is an adult. In his early 30's. He is an only child. (kind of spoiled) There has been no deaths in his family. He still has both sets of grandparents and all uncles and aunts etc. When I think of the excellent gene pool of this family it amazes me. No cancer in the family ever. Just excellent genes. He was just terrified. It was when my hair was falling out and he thought there would be chemo on the ends of my hair that could get on his hair to make it fall out. Hahahaha I still laugh when I think of it.
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I.....I'm flabbergasted at some of the rude, ridiculous comments people make! Amazing! And so many replies to a thread just started a few days ago!
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My MIL brought me a bible and a bottle of water and instructed me to open it to the 23rd psalm and open the bottle of water and leave it by my bed. She insisted it would cure me. I keep telling her that God answers all prayers, we just don't like the answer.
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Older Italian man sitting next to me is chemo room......" where do you have cancer...??? You look so good, you can't be that sick."
me...." I have breast cancer"
Older man...." Oh, well you can have one removed and still have one left for your husband, he only needs one.."
me..." I've had both removed..."
older man..." Oh," and precedes to look at my chest...I wear prosthetics..
Notice I didn't say older GENTLEMAN....LOL..
I honestly wanted to say, well, he can play with my fake ones any time he wants..I can just hand them to him....BUT I was still so amazed at his ignorance....
Another time, my mother in law was telling a story of her car that they had years ago, a wood panel station wagon, and said to me, " yeah, it wasn't a good car though it rusted and rotted away like cancer...."....SERIOUSLY...????...my poor father in law turned white then grey...Poor guy....
I also get, " just pray, just pray, it will help, and stay positive" from my mother in law.....really..??? Ya think I'm not doing that everyday...??? Every treatment, every test, every time I hear of another woman with BC...or when another passes here....ughhhh....
I guess we have all heard our share...I guess we should just laugh at the craziness....!!!
KLynn...0 -
I've only confided in family members about the stage iv. I'm starting to get slightly irritated at two of my sisters (one is two years older than me, the other five years older) who often seem to bring up the subject of retiring. I don't say anything while they discuss their two-five-ten-fifteen year plan, and I realize they are getting to be that age, but I think they could be a little more sensitive when I'm around, don't you think? At first it didn't bother me, but lately it seems to always enter the conversation and I'm growing weary of it.
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I was in the ER this week for issues and they did a lung X-ray. After leaving me alone for what seemed like a long while a very young man came in and sat down and took my hand and said "I hate to tell you but you have cancer in your lungs". I looked at him and said "DUUH!!!"
I was in there for a 104 degree fever but I am sure i was aware enough to tell them I was MBC-and I have had scans there so I am sure it was in my medical records.
The point of this was he told me they were fighting over who had to come in and tell me about the lung cancer. He said it makes them feel really bad when they have to tell people news like that? It makes them feel bad?? How bad does he think it makes us feel?
Or even worse that they are paying so little attention to my records before they try to treat me?
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OK a couple of thes stories --let's face it---funny--I'm not putting down any religion but water next to u'r bed? and Lynn the old man was silky funny--u should have said whst u said to us--funny
And it must be hard talking about futures with u'r sisters, I' a little surprised they continue to do it. They don't realize what u'r going thru.
And to JUST be told about u'r cancer seems really odd--I'd be in awe of ignorance at that moment.
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Anne45 I laughed until I cried over your BIL's reaction to your pillow, still laughing now!
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Jac53 there really are a lot of funny stories on here--but so far I too vote for the BIL's reasoning.--that is classic.
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OH MY !! I HAVE ONE..A GOOD ONE..This was just yesterday...
"I dont understand why they cant just replace all the bad blood with new blood." ya know, like a blood transfusion.
Thank you MIL.....Really.....
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Sometimes I want to tell people that I'm going to come back and haunt them.
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Surly, I like that idea!
Caryn0 -
Personally I don't do religion. I have been flabbergasted to read in various posts on other stage iv threads that people have been in some way 'blessed' with this because they are strong enough to handle it! For me this is hands down, the most stupid, ignorant, inhumane thing anyone could ever say to a stage iv woman or man.
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I agree on that one alesta. Being told "it's all part of god's plan" doesn't make me feel any better either. I think it's a pretty crappy plan.
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Oh I cant stand when God's name is beought into this--his plan, we're strong, we'rechosen---Oh please it just happens.
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My ex-husband's new wife waited until there was a lull in conversation at a gathering of about 50 people before asking loudly, "So which breast was the cancer in?"
Somehow I don't think people with lung or kidney cancer get asked which side it's in...
And the sad thing was, she wasn't even being a witch or jerk or whatever. Just really, really naive and ditsy.0 -
You should have said, "The other one."0
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Surly ----LOL
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Cancer is part of life and life goes according to God's plan. Even though He allowed cancer into my life I sure don't see it as a blessing and have never heard anyone else say cancer is a blessing.
What I don't see is how I would be able to make it through this ordeal without God's help. I wouldn't be able to sleep or go to scans without shaking in my boots constantly.
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