Lets do a Sh*t People say to Metastatic BC Patients
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Yep - just when I thought I had heard it all...My 32 yr old daughter is pregnant with her first child. As people in our small town pass the news around, several of them have approached me in our local grocery store or drugstore, given me a big hug and actually say, "Now you really have something to live for". WTH! Actually, WTF! As if my family and three grandchildren I have now are not enough to "live for", or that I have a choice of whether I want to "live for" something or not. OMG. I stocked up big time on groceries this week as I do not want to leave my safe haven (little cottage at base of a mountain), for several days. Just want to be with my grandchildren, the deer in my yard, and you guys for now!
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Reality, I'd have to say something to those people like, "You know, that's a really weird statement." They're making it sound like getting cancer was your way of giving up on life (you know, 'your' fault) and feel like there's nothing to live for. I would have stocked up on groceries, too!
SPAMgirl, my mother was a (mentally ill) drama queen before the term became popular. That's a shame it's all about *her*.
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A friend of ours just got a biopsy of a lump she found and my very own HUSBAND says to me "See, you're not alone. Others are going through this too." What? We don't even know if she has cancer! Getting a biopsy is very different from having stage IV, incurable cancer.
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Today the person in HR who is handling my disability application told me she really understands my situation because she had her first cancer at age 38 when her kids were little, and then a recurrence that was Stage 2! So she really understands how I feel and I must never give up.
I let her blather on and then I said, "Well that doesn't really help me because I know and you know that I'm going to die from this, and one day you'll be reading my obituary."
I have to figure out a snappier reply. Maybe: "Congratulations on being a survivor! And hey, thanks for reminding me that I'm not a survivor, cause that just made my day."
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"Don't give up."
Jayzus, do people have any idea how idiotic they are? Serves me right for telling this lady about my disease. I should have just said "cancer" and left it at that.
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So....I got an email from a cousin. He's a vegan and his message is - eat a vegan diet and it will cure your cancer. He's sending me some books about this (gosh I just can't wait to get them) and the email contained an excerpt from one of the books explaining how mushrooms contain natural aromatase inhibitors (the effect being enhanced by green tea). Hey, he's not a fanatic or anything. He concedes that it's harder to cure cancer with this diet than prevent it.
So now I have a choice:
1. Throw out my Aromisin and Afiinitor and eat mushrooms and drink green tea.
or
2. Delete the email.
Anyone wanna guess what I'll do?
Leah
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Leah - I know what you mean - I actually had a friend give me ground up mushrooms that "some guy in town" gave her. I was supposed to make tea with them. She did not even know the guy's name. We live in quite an eccentric town. We are nestled between two colleges, so often have people who drop in for a semester or two and then leave. We always have a few "trustafarians" - (from the word, "Rastafarians"). They are generally friendly, nice people, who just want to be "hippies" for awhile - they can afford to as they do not have to work due to trust funds or inheritances...thus, the term: Trustafarians. Oh yeah, I'm going to trust a city kid, acting out a hippie fantasy, and make tea from mushrooms he dug up.
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Too bad they gave you ground up mushrooms, because they're really good battered and floured and fried! Of course, they probably won't cure your cancer that way ;-)
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Me too. My family keeps saying "See you're cured." "Why do you need to keep getting scans? That negative attitude will make it more likely to come back." "Since they didn't find cancer in your mastectomy, you should stop the herceptin infusions."
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surfdreams - thanks for starting my a.m. out with a smile! Yes, battered, fried, mushrooms. I may just have to order-out for lunch today. A little pizzeria in my town makes the best one - they air-fry them instead of deep-frying them.
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to all: I just re-read my post from last night - Please do not take offense if anyone is a practicing Rastafarian. The term: "Trustafarian" is in no-way meant to be prejudiced. The young people who come to my little town to try a new life-style, often decide to wear their hair in dread-locks. That's why the term developed, as many Rastafarians wear dread-locks as part of their culture.
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I love mushrooms! All kinds of them. I put them in everything. Guess I'm not getting the right kind.
The only reply I have for "You have to eat blah blah to cure it" is that people who've eaten blah blah their whole lives still get cancer!!
It drives me nuts that people still think there is a way to 100% prevent BC, or any kind of cancer. This is also where my issue with the pink crap comes from. Awareness. Pfft. I knew nothing before I got BC and the little I thought I did know was wrong!
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Stormy, I couldn't agree more on your point about the pink stuff creating this huge myth that if we all only "fight hard enough" or stay positive, or walk enough miles, or watch other women walk enough miles, that will keep the breast cancer boogie monster away. There is so much misinformation out there, in spite of, and actually BECAUSE of all of these "awareness" programs that I could just spit. Talk about a perfect example of "magical thinking"! Then, on top of it all, on top of all we are already going through, we have to deal with the fall out from all that crap. It's honestly almost too much for me sometimes.
The thing that REALLY gets to me personally, in my life, is that I have a neice, who is a diabetic, and every October rants on and on on her facebook page about how "unfair" it is that Diabetes doesn't have an awareness month (um, it does actually), and that it's not "sexy" and not about "boobs", and how it's a REAL disease too!
Really?
Ok - trade ya'. You win.
This year, I'm not sure I will be able to restrain myself from responding to her borderline cruel, and insensitive posts. I know she's only 23, I KNOW that - but honest to God, I'm no saint. And this year, I may just lose it on her.
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Liz, I hear ya. I don't know if I could keep my thoughts to myself on that one either. BC isn't sexy by any stretch of the imagination. I can get where she is coming from, but that is so very insensitive. Even more so knowing you can see her posts.
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I give up on my Mom too. She recently visited (not because of the recurrence, but because she was already schduled to come for 2 days)... she didn't stay any longer than the pre-planned 2 days... and while she was here, continued to talk of stories such as how awful it was that they were having the deal with her 73-year old friend finding a lump and needing a biopsy... and how awful is a biopsy?? (questions to me)... and so on. She just didn't get it... that, I would love, love, love to see anything near 73 (I am 44)!!!!! I asked for her to take me out of her Will and help us out financially now, and she said she couldn't, she had nothing (not true). She heard me on the phone while she was here, call my HR Dept. and request Living Benefits Form... and she knows what they are because she heard me explain to the woman on the other end of the phone who didn't know what they were... so, my intentions were pretty clear (um, forms for someone who is terminally ill... how could you mistake that?). So, now I pretend with her that since radiation is done, I am done with treatment and I don't talk about it.
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Oh, while she was here, I was on vacation, so not working. I explained to her multiple times that SS disability is 6 months, no work, no pay and we cannot afford it. So, she calls me later in the week when I am getting ready to go back to work, and says "Are you sure you are up to going to work... maybe you should call out sick." Really, are you going to help us pay our bills... oh, wait... no, you are not, so... what don't you get about this???
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OK, last nşight watching TV with DH. There's this really gourgeous girl we see, her body is just yummy. I saw the look on my DH's face as he stared her, then thinking about our last year, my current looks, you know.. smiled & said "and you're stuck with this one!" He immediately turned to me to say "you're much beautiful then her". So sweet of him, but really??? Well the boob-lacking side of me has a hard time being convinced. Anyhow, I try to stay strong with my Kardashian-butt still!!!
Leanna, I am sorry for you to have an HR who knows less of their job than you do, just another bite on your plate! As for your mom, I strongly believe there's something they ate / drank while growing up, causing this denial / misunderstanding in their generation. It is not family or culture specific, trust me. We have them all around the world!
Fitz, I guess it's time you pass this video (or rather epic movie) to 20th Century Fox. We can't even fund for research for the cure, production of his thread will surely be costly
hugs, Ebru
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I get scans every six months. Someone said to me, "that's just like going to the dentist." Yeah, OK.
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4myangels... people who say stuff like that, I repeat it back to them.... "yep, it's JUST like going to the Dentist" and I hope they will replay it in their head later (some day) and realize what they said!
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I once received flowers with GET WELL SOON BALLOONS.
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I am not defending some of the really idiotic things people say to us and there is no defense for family and friends who have clearly been told about our situations, but...most people don't know stage IV from a stagecoach. After all, why should they unless it's effected them or someone they love? Cancer is complicated and unless you have a reason to learn about it, most people don't. I know I didn't know much about bc until it knocked at my door. Since I moved to stage IV so quickly, I took the accelerated course
Caryn0 -
Caryn, an accelerated course, indeed!!!
Ebru
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Leanna - yep, just like going to the dentist - sitting there in a depressing waiting room, worried about scan results, drinking that awful berry smoothie crap - and so much of it. I seldom cry as i am on Prozac and actually can't cry most of the time - even when I need to. But yes, I did cry last month when I finally choked down my first pint of the solution and then the receptionist handed me my second bottle. I know the CT nurse was just making conversation, but when she walked me back to the CT area, she said, "Hi Sher, just in for a routine scan?". I just said yes - I thought: Routine? WTH is routine with this da*mn disease? Yep, routine. Just checking in to see if the the mets in my lungs are still growing at an alarming rate. That's all.
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Caryn - Yep. I took the same course as you did. My onc told me I would have been staged at IV from the day of dx. if they had scanned me and found the mets to lungs them. I somehow feel guilty for not finding the lump sooner, but it just was not detectable before I found it. I had yearly mammos, gyn visit, the whole preventative deal -Never smoked - don't do drugs or alcohol, exercise and eat healthy. There was no way to know sooner. I have to convince myself of that and stop with the guilt trip!
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My coworkers took me for a dinner once... it was very nice of them but all they mostly talked about was how many years they have until retirement. That was almost funny to me. I realized that most of them do not know what stage 4 means. I did not want to explain or complain as I still need this job. They really did not want to hurt my feelings.
My SIL however called me yesterday and said that only if I could ask God for forgiveness… I guess the ending to this sentence was supposed to be “I would be healed”. How evil does she think I am? Anyways, since she went all religious on me, I had to remind her story from the scriptures how Apostle Paul was ill and begged God to make him well and God said “No. But I am with you; that is all you need.” Well, she replied that I am giving up?!?! Maybe she felt lectured as I am usually the one who listens. This was probably my first time speaking up to her.
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svetik - Good for you! I hope you continue speaking up to her! One of my relatives advised me that I have changed since I was first diagnosed. She said i "used to be positive" and think about recovery - not about giving into the disease and "letting it take me over". She thinks I should not "think in stages". She does not want to hear that I am "Stage IV".WTH? It's not like I can will it to stop growing in my lungs! I told her that I am not being negative - I am being realistic. I also advised her that I have not stopped being hopeful. If I was no longer hopeful, I would not be trying Xeloda. I do understand why she is upset. We are very close and she does not want to lose me.
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svetik & Reality, sometimes in the back of my mind, I want to say to these thoughtless souls, "Okay, fine, but when I'm dead and gone, I hope this conversation we're having right now doesn't come back to haunt you." Which would be my way of saying 'I hope it DOES.'
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I wrote off doing a little video because most of this stuff that people say is just sad, not really that funny.
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Thanks for your support! On some days I am more sensitive to what people say than on others. Sometimes I can just laugh (inside) through it and sometimes I cry after.
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Mrs. M - great response! Thanks.
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