Lets do a Sh*t People say to Metastatic BC Patients
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Kiwi, I just saw your post. " I guess that's me so you guys are off the hook!"
That's priceless! Do you mind if I borrow it? It made me laugh out loud.
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I found out yesterday, terminally ill isn't that bad a term for some people, apparently. Sigh. Vadre, maybe you should come and join my family.
I was at a family gathering yesterday and my brother (who has had a different kind of cancer and who shares a dark sense of humor with me) said something about doing well, even "those of us who are terminally ill" (it sounds cold in type, but he was teasing me and meant he was glad to see me doing so well right now). To which my mom replied (not joking), "well, we're all terminally ill, we're all going to die."
Yes, we are all going to die, but one of us is in her 40's with stage iv cancer.
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Yes, RosesToeses, I hate when people try to minimize what a person deals with when faced with a stage iv diagnosis. It's not right. I guess some people want us to be writhing in pain with all kinds of other visible physical difficulties before we 'complain'.
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I agree that comments that minimize what we are going through are hard to take. I am stunned at what some of you have had to hear. It really does come down to a fear of death, I think. Sh*t happens, life ends and for some us us the end is closer than we had expected. Horrible to turn 60? From a psychiatrist!!!
I just turned 65, have lived with mets for nearly six years, and welcome 66, 67 and whatever age I am fortunate enough to reach.
I am now, for the first time in my life, I'm not trying to make everyone comfortable (I am more careful with my sons). Kiwi, I love your response to the remark about the 1 in 3! I honestly think it's helpful to gently push people a bit outside their comfort zone because death is real for all of us and it doesn't help anyone to sugar coat the words or blame the person facing it sooner than later.
One of my most painful memories is how isolated and lonely I now realize my mother was when she was dying of stomach cancer. It just wasn't something to talk openly about, maybe to keep giving the person hope (false as it was) and I'm sure she was trying to protect us from her suffering. It still brings tears to me eyes to think about the fear and loneliness she never talked about.
Thank goodness we have this forum to talk openly with people who understand. Nothing is censored here and for that I am grateful. Thank you all for your honesty and for sharing your vulnerable hearts.
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Jill, your description of your mom makes me think of a lady I knew for years at my church. When she passed away, everyone found out that she had been battling leukemia for 10 years...ALONE. She made sure to always wear her wig, makeup, dressed up, etc. So many people admired her strength, but all I could think about were the people who could have helped make her journey easier. I felt more sorry for her than anything else. How lonely she must have been!
As to the 1 in 3 comment, I have a similar response when people who don't think will say, "I heard that (fill in the blank) causes cancer." I just say, "Oh. Oops, too late for me!" and then they look terribly embarrassed. I do try to eat well, but there are times when dang it, a donut is what I want, so a donut is what I'm eating! I'm sure there are those who will shake their heads at my funeral and say, "if only she didn't eat that last donut..." Let them think that the next time THEY eat a flippin' donut!
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I remember thinking when my 60th birthday was approaching that it didn't seem like something to celebrate and asked my DH not to make a fuss. I got my stage iv diagnosis on my 62nd birthday (bummer) but I've made sure to celebrate 63, 64, and 65. Not expecting to have many more makes each one more precious.
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You all know what? If you feel like eating a donut, go for it!!! Next week I'm going to a conference where on Sunday they have donuts! I'll eat one for all of you.
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Tilda, I felt as if I was reading my own words when I read your note! I think I have said exactly those things... maybe even here! I can't believe how insensitive people can be and how much it hurts sometimes! I'm SO glad you have a friend you can count on for those moments when you simply can't stand it anymore.
Romansma, I am at a loss for words when I think of your Mom's terrible remarks. How ANY mother could accuse you of not trying hard enough for your children is awful but for it to be your own mother is beyond understanding. I know that she is overwhelmed & hurting but that is inexcusable. I hope the miracle cure parade has gone for good and that your Mom can find someone to help her get her stuff together so that she can give you the love and support a girl wants from her mother! If you need someone to talk some sense to her I'm happy to take on the job - as would be many of your friends here! Anyone who has read your posts here knows that you are a strong woman who uses everything you have to live your life to the fullest with and for your kids! I hope that you can wrap your Mom's words up in a box and leave them far away from you. You deserve better.
Sweet, pain free dreams friends. You mean so much to me.
Virginia
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I was supposed to die 5 years ago, but here I am. People are just so used to having me around that they probably don't think I have cancer anymore.
How about this scenario:
They ask "How are you?" Instead of saying "Fine", say "Lousy".
They will say "What's wrong?" You say " I've been hurting all afternoon."
They'll say "Why?" You'll say "My cancer 's bothering me."
They'll say "Oh. Are you taking anything for it?"
Now, what you want to say is "I'M F****ING DYING AND IT HURTS ALL THE TIME!". " I have a tube in my chest where they periodically pump poison, and I go for tests where they pump more poison into me", but you don't say it because you're too nice.
By the way, "Have a nice day."
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I wish people would stop asking how I feel altogether. It always becomes an exhausting exchange unless I just say fine. It's either something like that scenario or "what hurts?" Or "but you LOOK like you feel good. Or "WHY does your chest/back/whatever hurt?" And why do you continue to ask when I've already told you it hurts every day! I know, good intentions...
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So, I moved from Fort Lauderdale to a very small town several years ago. I bartended in the same place for over 8 years. I literally can't go to a restaurant or the grocery store without running into an old customer. I'm " that bartender from the saloon that has stage 4 cancer."
Most of them are very sweet, but I've had several conversations like you were talking about.
One, with an old customer.
Her- I'm so sorry to hear what you're going through. You look pretty healthy. How are you feeling?
Me- Well, ya know, I have a lot of aches and pains but I'm still here!"
Her- Well, we all have aches and pains. That's just part of getting old.
Me- Yup, I hear ya.
WTF?
It wasn't even upsetting, but like you said, it's just exhausting.
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ahh yes, like REM said, everybody hurts sometimes. Except for us, every little ache reminds you of your impending doom. If I'm feeling fiesty, when I get one of those comparison stories, I just say "that must be terrible!" In return I get a horrified expression and the subject gets changed or it backfires and I get to listen to an even more exhausting "that's not what I meant/I mean that could never compare to what your dealing with/but you are my hero" verbal vomit. Alas, a simple "mm hmm" is so much easier sometimes.
I don't remember who posted about being brave or fighting vs being a patient, but I used that line on my boss today. She was telling me how I'm going to keep kicking cancers ass and prove the drs wrong and that I'm her hero. (I know she's trying to be nice and supportive and I would sure love it if she's right but damn it, she just doesn't GET it). I responded with "I'm just a good patient". It went right over her head. I guess I should have just said thank you.
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Hi Girls.
I have been a participant of Relay For Life for the past 11 years and am an avid fundraiser. Just this last spring me and my team raised $11,000 for the American Cancer Society. I really enjoy doing it and since my last cancer dx most of my neighborhood is 100% with me. Now when I don't work anymore I feel this is a good way of spending my time, I can do it on the days I fell well and when it works for me. Any fundraiser is also a good way to raise awareness and that is just as important as raising funds. Since reading this thread I have felt that I want to raise awareness for metastatic breast cancer too. The word needs to get out. If nothing else, let people know how to speak to a IV patient.... I started a blog on FB with the intention to spread the word and make people more aware. With awareness comes knowledge and understanding and ultimately this might help us get heard. Really, 5% of all research funds is all that is spent on research for mbc. We deserve more... We need drugs that can keep us alive longer and give us less se... If you are interested in reading my blog please visit https://www.facebook.com/pages/My-life-with-metastatic-breast-cancer/293088667519130?ref_type=bookmark I encourage you to share some of your experiences on my blog as well.
Karin
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I can't get over the comments made by co-workers, family and friends. I for one am sick to death of the comments "you look good!" Does that make the cancer go away? The last oncologist I had, had a NP who was just insanely upbeat, cheerful and happy all the time. She would say to me "You look so refreshed!" I complained over and over about insomnia and achiness.. and was met with silence, no support and "you look refreshed!" I finally said, "yes dermablend at 35$ tube can cover the darkest of under eye bags." So we try and muddle through, cover up our cancer and minimize the SE. The world doesn't want to know about the cancer - what happens in cancerland is supposed to stay in cancerland. It's an unfair burden on top of everything else. When family asks how folks are I rattle off about my kids, pets and DH and leave it at that. It's easier.
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"oh, isn't that terminal?!"
"you'll be better by Thanksgiving!"
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at a look good feel better class a volunteer was telling the story of how the end of her fingernail had fallen off due to an infection. She said "it was the ugliest, nastiest thing ever to have to look at her finger with the nail missing " she went on to say how she felt embarrassed and lost some self esteem Until the nail grew back. I thought , but held my tongue, are you f'ing kiddin me ? A missing nail? Hope she never has to look in the mirror and see a huge scar where her breast were removed or the tender bare gums without my dentures becuz chemo made my teeth brittle and break or the huge scars on my back from reconstruction or a bald head with no lashes and so on. Was she seriously f'ing kiddin ? We were at a look good feel better class surely she realized what people in the class were going thru. Grr
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It's good to hear that I'm not the only one to feel irritated at the superficiality of "Look Good, Feel Better" classes. I'm sure the presenters mean well, but the class I attended spent more than half the scheduled time on applying foundation and lip liner, when most of the women needed to deal with hair and eyebrow loss, and maybe skin and nail care for the estrogen-deprived. I hope someone took your clueless make-up artist aside afterwards to warn her not to compare her trivial issues with the problems cancer patients face.
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Yes, the LGFB program is good in theory, but I'm sure it varies greatly from place to place as to how much of a help it actually is. The one I went to is run by volunteers, and you get well meaning people but not necessarily ones that are clued in.
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Lordy people just don't think before they speak do they. For the most part their well meaning gaffs are like water off a ducks back with me, however when my step mother asked a couple of weeks ago whether I had made any funeral arrangements and would I like her to officiate at it as she is a registered celebrant I was gobsmacked!! WTF I'm stable and still working full time. She is nearly 80 and in ill health. I said rumours of my imminent death have been greatly exaggerated and there was no need to start panicking about funeral arrangements.
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LOL Shazza. No excuse even at 80
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Never occurred to me to attend one of those sessions once I read the "what to expect." Makeup, hair, eyebrows.... I have never bothered with any of it. Now, if they had planned sessions about keeping your IQ up, how to maintain concentration during chemo, and how to keep your job while fighting nausea, I would have been the first in line.
*susan*
p.s. I thought all the volunteers who ran these programs had been through cancer treatment. Is this not the case?
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Absolutely a priceless remark by a mother who thought she was being kindly...thanks for sharing...Carolyn
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Dear me Shazza, I am not sure about any family member or friend who would ask about funeral arrangements. I think that person needs more to do with her time...I think it is outstanding that you are still working and still on the high road...Tell that woman NO ONE knows when our time on this earth ends. It there is one thing I have learned from reading these threads it is that every single person has a different life path while walking the road with breast cancer. And each day there is more hope for another treatment to try....Thanks to everyone for such enlightening comments. Carolyn
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Shazza, I just have to shake my head at your MIL's comments and I got a chuckle out of your Mark Twain quote.
The LGFB program in our area is run by a nun who was very calming and cute but not a person who ever had cancer. The beautician is actually a person I know from my town who is gorgeous, has a heart of gold, lives a wonderful life and had a number of people in her life affected by cancer and she volunteers for this every month as her way of giving back. I'm sure each chapter of the LGFB program operates in its own way.
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I never felt the LGFB sessions were for me. My impression was that they were designed to help people to deal with changes in their appearance while they were in treatment. Tips to help get you to the point when you were "yourself" again. Since these changes aren't temporary I never though they were addressed to me. I actually figured I would end up more marginalized and upset than anything!
Snazzy, I'm so sorry that your step-mother doesn't get it! Seriously? Only YOU get to decide even to make those decisions and who you will honor by asking their participation. How people assume that that is a conversation you want to have at all, let alone casually and at their timing is beyond me! I'm sorry that someone who you should be able to count on was so far away. I'm having this fantasy picture in my mind of you looking at her and saying: "What? Oh my, you're so old I was just assuming that you would go first. I was gonna offer to do your obituary for you. Since we're so close and all!" Yes, I know, I am very passive aggressive and getting more so every day. 😉
These hurtful, thoughtless comments are hard enough to take from people I barely know, even if they are "in the field" and should know better. The ones that hurt so much, and mKe me so tired, are from friends or family who I have explained to, several times what Stage IV is. "No, Aunt Whoever, this isn't like her. She had a lump, yes they had to do some chemo but all along they felt they had it all. Yes, I know it was serious and scary it's just not at all the same thing. Yes, it is breast cancer, not bone cancer. What I mean is that it is N E V E R going away." I so tired of being up against the pink ribbon belief that it's just a matter of fighting back. I've got a family reunion coming up. I adore my family. They mean so well and love me so much. I just wish that they would really listen, get past their fear - I'm afraid too and try to understand. It's not going away.
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a friend of mine was just diagnosed w mbc. She said to me, "we beat it before, and we can do it again". I did not reply!
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bhd, it would seem your friend is in heavy denial!
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Sometimes outstanding examples of "Sh*t People Say to Metastatic BC Patients" turn up as advice in this forum.
Just today I noticed a fabulous example posted recently on this very thread.
LOL!
Tina
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My head's still spinning!!
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