Lets do a Sh*t People say to Metastatic BC Patients
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I have been upset by responses to a post I made here a couple of days ago. I posted a sorry about having used the word "terminal" to describe my prognosis. I recounted that my Aunt called me later to suggest I not use that word as it could be upsetting to other people. I posted this on "S**t people say" because, at the time, it was difficult & upsetting for me to understand that making other people comfortable was my job in that situation. I thought that "S**t people say" might be a place where I would find understanding & recognition of my situation.
I understand that "terminal" is a hard word and that there are many words which leave room for hope and time and other positive things. I don't use the word very often, at the time I used it partially because of its seriousness but that isn't really important now.
The response to my post was to suggest other words I might have used. Words which were less stressful to other people. Words that members of our "Stage IV Club" have found helpful to describe our diagnosis. I didn't ask for help finding better words, I know there are better words. I certainly didn't hope to, in essence, be told that my Aunt was right, I could have used a better word.
When we express frustration about comments referring to "being hit by a bus" or "at least you're loosing weight" we aren't asking to be reminded that these people love us, that they don't mean to upset us, that they didn't really think about what they were saying, that they didn't really mean that. We are asking for understanding, support & fellowship.
I thought long and hard about not mentioning this. I really don't like to upset people or seem bitchy and self-centered. I don't want to make anyone feel uncomfortable but I actually considered not coming back to this feed because I felt so misunderstood. That seems particularly ironic, since the whole point of this particular conversation is to find understanding and support when people's responses to us and our cancer diagnosis leaves us feeling misunderstood and even dismissed.
I apologize if I'm being too sensitive. Especially if that means I upset one of you in the process! This has just been a particularly difficult theme in some of my family conversations. While wanting to remain positive and hopeful it is really important for me that people understand the reality of my diagnosis. It hurts to have my fears dismissed because "they are doing such amazing things in cancer research." I need those who care about me to understand the whole picture. That is what led me to use the word terminal in the first place.
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vadre,
I, for one, think you have nothing to apologize for. I have no problem with any of the words we choose to use to describe ourselves. There is a reason my extended family doesn't know about my current medical status. I simply am not interested in the type of discussions you have had with this aunt. And again, you chose to share. Of course, I wish that you had found the support and compassion that you were craving.
Your aunt wasn't right. And she tried to dismiss your greatest reality which is really not okay.
Take care.... and please, continue to share with this group even if the responses aren't exactly what you are hoping for. Humans have opinions!
*susan*
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Another Susan chiming in to say that I also completely understand where you're coming from, Vadre. I posted earlier that my in-laws sent me an e-mail saying "We hope it's nothing serious". I wrote back that it is in fact very serious and they should think about how they can support my husband and children in the future. I also stressed to them that metastatic cancer is incurable since, as you pointed out, otherwise they are likely to keep talking about how I'll get better.
Mom wanted me to be just blindly positive. "You'll live for a long time!", etc. I told my husband that stresses me out. I'm doing all I can to live as long as I can but these conditions can turn on a dime and get suddenly worse. I don't want to feel that I have somehow failed if that happens. I'm trying hard to live in and enjoy the present because that is all any of us can be sure of.
Appreciate your thoughts and opinions!
Best, Susan
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vadre, I agree that it was not cool or kind of your aunt to reprimand you that way. I am continually reprimanded that way by my aforementioned boss, when I make an off hand comment about funeral planning or what my new reality is. It makes me feel like she isn't taking my feelings seriously or that I am purposely raining on her parade. Or heaven forbid, using a thoracotomy as an excuse to work from home for a couple of weeks. I'm sorry that you had to deal with this from a family member.
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Susan, Susan & Sheila,
Thank you so much for your understanding & support. Sometimes I just want to know that there is someone out there who hears me! I so appreciate how "real" everyone here has been. Sometimes it feels like there isn't time for the social niceties - I just want to get to the things that are really frightening, maddening and wonderful!
Susan, I really get what you mean about not wanting to accept, IN ANY WAY, that not being optimistic enough makes me accountable for the path that Cancer takes. That kind of talk really alarms me.
I wish that I didn't have metastatic BC, but I have "met" some of the most amazing women in the world. That has been quite a gift.
Virginia
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Vadre, it certainly wasn't my intent to cause you to be upset in any way. Your aunt was completely out of line asking you to not use the word terminal. You have every right to explain on this forum that the responses to your post upset you and I don't take any offense at all. I don't think you're being too sensitive. I am always in favor of airing open and honest comments.
I think if I'd received a phone call from a relative like you did, my mouth would have just gaped open and hit the floor and I would have been somewhat outraged and hurt. Please accept my apologies.
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You beat it before, you'll beat it again! AS IF?0 -
You beat it before. You'll beat it again! AS IF?
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Vadre, I'm sorry you were upset by my comments. I was picking up on the word terminal instead of the rest of your post about your aunt. You have every right to be upset, and to use whatever terminology you need to get the point across. You should not have to apologize for stating was is, or gloss over terminology for others comfort. It says more about them than it does about you. I was speaking from someone living with stage iv, that for me it is not the right word. I had struggled to find the right word, and wondered out loud what other word I could use other than terminal. Another woman in our support group suggested incurable, and I immediately identified with that.
What should you have said to your aunt? I don't know. Perhaps you may say one day what you had hoped to say as mentioned in you post.
Again, sorry for causing you to feel unheard. Truly not my intention.
Diane
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DivineMrsM & Diane,
You are so lovely. Your apologies and kindness brought tears to my eyes. It is so good to be understood! Thank you. My Aunt is a wonderful woman who would do anything for me but sometimes she speaks without thinking or she doesn't think about the context or something. No matter how well intentioned or how much love is shared, thoughtless words still hurt. You all have done much to make me feel less alone.
What is most ironic is that I, too, am not particularly comfortable with the word terminal. It has come to indicate that the Undertaker is not far away. I'm nowhere near that! I like several of the suggestions that have been made. I like "incurable" because it probably will lead to further conversation.
I see my MO on Thursday. It appears that my three year run with Arimidex may be coming to an end. While I feel blessed to have stayed with my first AI this long, the thought of changing and all the unknown that brings is frightening. I want to stay in my happy, positive place. I'm glad I now have you all there to lean on! Peace!
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vadre- I like "Chronic Illness" and I also have felt misunderstood on another board. No one responds to anything I say and it's even a board I know a little something about! I felt like I had some info to offer and I get shut down. I'm guessing it's because it's a newby board and I'm back with Stage IV. (It's one of those chemo 2014 boards) So I've just decided to stay around here where I'm welcomed. I respect those who have acknowledged you and apologized. The world needs way more of that.
You're aunt doesn't seem to be comfortable with your diagnosis. I feel for her that she is too uncomfortable to allow you to feel and say whatever you need to. After all.. None of us (cancer or not) get out of here alive!
Tyrn- if one more person says that to me I'm gonna give them the dark and gritty truth. No one likes to know the details but they are gonna know! That statement makes me crazy!
My step daughters mother also thinks kittens breed in a certain season. Smh...
I'm in the hospital. Wish me luck, send me a prayer, throw up some peace signs anything. I want outta here!!
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you are a hoot kite! Even in the hospital...although I know sometimes I can get a little punchy when left by myself for too long. Sending prayers and throwing up a peace sign just because I want to
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Kite,
Sorry to hear you're in the hospital and hope you will be out very soon. You could get sick from all the germs in there! ;-)
My mother-in-law (the same one who said she hoped what I had "wasn't too serious" after being told I had metastasis to my brain, lung and eye) just sent me an e-mail saying she is praying for a speedy recovery. I had to explain to her that there was no possible of a recovery, speedy or otherwise, but that I am hoping for a period of remission of at least lack of progression. And this is a woman with a Ph.D from Princeton!
Hugs, Susan
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I usually post on the stage iv forum after similar experiences that you had, Kite. I would post on a very active subject on one of the lower stage threads and suddenly there would be no more comments, or anything I said would not be acknowledged. I just moved on, it's better that way.
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Thanks Ladies! I'm just sorta stuck here until they can for sure find out they don't know what's going on and let me go. I never seem to get an answer. Where is Dr House when you need him?
The divinemrsM- I completely agree with you. No need wasting my time.
I've really fired up about that Pink Ribbon Inc documentary! I have been looking over the Breast Cancer Action website and Barbara Brenner. Pretty interesting stuff. I you have a few I'd love for anyone to check it out and tell me your thoughts.
Here's to have a single room all by myself atleast! It's the payoff for being in ER for 12 hours.
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Kite, I watched the Pink Ribbon Inc movie awhile ago and thought it made some excellent points. I also subscribe to newsletters from Breast Cancer Action.
You may also be interested in Pink Ribbon Blues a website devoted to 'how breast cancer culture undermines women's health'
This is their Facebook Page: Pink Ribbon Blues
For some reason, I can't get the pinkribbonblues.com website to come up, but it's also the name of a book by Gayle Sulik.
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Divine-thank you! I will check it out. I did subscribe to Breast Care Action as well. I feel better about my not so happy thoughts lately. I know we don't need to walk around as big ole anger balls but this attitude of somehow we've been given a gift and new lease on life is nauseating. I'm just glad my feelings were validated.
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Kite, that sucks! I hope you can break out of there soon!Dawn xx
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Vadre- I am not usually on this thread but also stepping in to support you. It is other peoples fear of discussing anything related to death. I hear things all the time. For those who deny their reality wake up. Do the preps like making a will especially a health living will. To blindly deny is not helping others who will com after us. Yes , we would all like a miracle and I pray for one every day.Practicality and nursing experience lead me to make my plan for the inevitable as it may lesson the load for family when that time comes. Hugs to you.
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I was diagnosed stage 4 out of the gate. A good friend of mine was also around the same time. I chose to not have surgery or radiation. She chose to do both.We are both on hormonals. We text each other a few times a week. We talked about her double mastectomy and severe radiation problems. Ive listened to all her horror stories with lymphedema. I truly love and respect her.I very much respect her decisions. One very tough day she said I wasnt saying enough about what im going through.So, i opened up and vented about some pain I was having due to spinal mets, etc. The next day she texted me back, " I love you and care about you, but you chose this."
I was flabbergasted! I didnt choose stage 4 breast cancer! Ive worked closely with my oncologist and came up with the plan that was right for my situation. I never would have thought or said " You chose this. " when she was going through all her very serious side effects from her treatments. That one really hurt.
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Sorry I dropped out of site - house guests were keeping me busy & having fun. Even though I was enjoying myself I kept wondering what was up with my BCO "friends." I do think of you that way because we have many things in common the most important of which is genuine care for other people!
Kite, I am so sorry you are in the hospital! I think that the worst part of this disease is all the time we spend in agonizing waiting. The one thing that makes waiting even more awful is having to do it in the hospital! I am sending peaceful thoughts your way. I do hope that you are home soon! I'm glad you have computer access!! Thank you for reaching out to offer me support.
Grammy R - I think you're correct. I think fear of death, fear of even discussing death, is often behind the dumb things people say and do. I think that's why conversation on these feeds shuts down sometimes. Things just get "too serious" for some people. I stay positive and hopeful but I stay realistic & honest too!
KUDRA, I wish there were words to say that might make some sense of your friends thoughtless, hurtful words. None of us chose this. None of us! Shame on anyone who says otherwise. You deserve a friend who listens without judgment to hear the strength and courage you have even when you are sharing fear or pain. I'm sorry you didn't get the support you deserve.
I'm sending wishes for peaceful sleep, SE-free days and friends who really listen to all of you. Peace,
Virginia
PS. Can't wait to look into all these new places! Pink Ribbon Inc, Breast Care Action & Pink Ribbon Blues....thanks for the tips.
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Vadre, Thank you so much. I just wanted someone to say " That Sucks!" Im so sorry youre aunt was so clueless. Love to all of you. This is an awesome thread.
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Kudra, wow, I would have to question if that woman is truly a friend or not. I could never imagine myself saying something like that to anyone, much less a close friend. I think she was incredibly cowardly to text such a message to you. I think I would have had to go see her face to face as immediately as I could to confront her on something like that, especially after she asked you to open up and you did. Then she just cut you to the core. I mean, where the hell is her compassion? Awful!
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Yeah, Kudra, that really does suck! I've had similar experiences and I think it's important to voice your hurt in a situation like this. She has faulty reasoning and she needs to re-examine her line of thinking at your urging. If she were not a good friend, I'd say let it go, but she is and it's best to clear the air.
My mother was on a crusade to save me over the past 6 months or so. her way of doing this was to call and email about every quack miracle cure she could find. I finally shut her down, telling her that I know she means well, but I have well trained doctors and I am treating my illness with cutting edge treatments that I hope will slow this process down even though I know it won't provide me with a cure. She got angry and told me I wasn't doing everything I could to stay alive for my kids.
However, since then, the miracle cures of every shape and color have ceased.
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I haven't read this thread for a bit, but so glad I came back this AM.It is always good to know we are not alone. DivineMrsM - yes to incurable and unpredictable.Yes it could all turn on a dime and that is something I often put aside so to get through my days and weeks.
From my psychiatrist not long ago - I mentioned I was turning 60 this year. His response "I know how that is, it is horrible isn't it" Really WTF. My response - "Given all I have been through during the last few years, I am very grateful to be turning 60, not sure it was something that was going to happen" Head down no eye contact from him!
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Vadre. What your aunt said is so insensitive. Shame on her. It seems to me that peopke are so afraid of the word dying that they avoid it to all cost. I know I'm going to die from this disease but friends and family members are so afraid of talking about it. I would feel better if my dh and dds would talk about it more openly. I cringe when I hear them say "You'll beat this you're such a strong woman" or "just stay positive and you'll be fine" I want to tell them what I think, what I feel and what I want but nobody wants to listen!!!! Thank God I do have a girlfriend that understand and she is the one I call when I "really need" to talk. People in general really need a lesson in how to talk to Stage 4 cancer patients. Maybe I'll have to start a blog
Cant wait to see if all these comment will end up in video. 0 -
The worst thing is how after someone dies of cancer, people shake there head and kind of blame the person who died for not being aggressive enough with treatment or not having a positive enough attitude. My Mom was telling me that the daughter of a friend of hers died of cancer in her twenties and the Father was criticizing the fact that she ate a bunch of donuts while she was metastatic! First of all, if a dying person wants to eat donuts, they should be able to eat donuts! Secondly, to tell that story after she died as though that was a factor in her death is just horrible. And the thing is, my Mom was telling me that story, not because she thought it was horrible, but because she was lecturing me about what I should eat. BTW, I'm vegan and avoid processed flour and sugar so why do I need a lecture about nutrition?
I've been working hard to explain to my Mom that, while I believe that a positive attitude is important, it's also not good to have unrealistic expectations. For example, she told me, you just have to believe that the treatments are getting rid of all of your cancer. I said, I try to think that but the fact is, I have a gigantic tumor in my breast that I can touch and measure any time so it doesn't make sense for me to think that it is all gone.
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Hi all. Decided to quit lurking and participate a bit in this thread. Kite - so sorry you're in hospital. SusaninSF - so well stated.
I think a lot of it boils down to people a) not knowing what to say, b) people being uncomfortable because they don't know what to say, and c) people not being willing to discuss death.
One of the most inappropriate, but in the end funny, comments made was when I was discussing my cancer with two coworkers. One of them said, "Well, statistics say that one out of every three people die of cancer." Then he clamped his mouth shut as he realised what he had just said. He and the other guy looked at me and I said, "well, I guess that's me so you guys are off the hook!" And we did all laugh. He said it meaning to be comforting, so I didn't take offense.
As to other things - most of them have already been posted. I will admit to laughing out loud at some of them because the comments are just so outrageous (colonoscopy next week comes to mind...) and almost tearing up at others because people are insensitive to the point of being mean.
Worst thing said to me was just after diagnosis. I'm from the US but live in New Zealand. One of my US friends said "well, I'd better come visit soon as I've always wanted to see New Zealand and I won't have a free place to stay much longer" (because I'll be dead). It's her universe but we're welcome to share a small insignificant portion of it.
Take care and hugs to all,
Terre0 -
Yes, my mouth just gapes open as I continue to read these insensitive comments people make to women with mbc.
SusaninSF, your post is so true. A woman in our area passed of bc and someone said, "She had an eating disorder when she was younger and was always worried about her weight." as a way of explaining why she got the disease in the first place and why it took her life.
And I still don't get how people figure being positive or just 'believing' will cure you or keep you alive. If this is the case, why so many deaths from any form of cancer?
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Romansma, I've had a few people that were trying to "save"me in the beginning. Luckily it wasn't my mother. I pretty much just stopped talking to them. I went to a dentist and the nurse saw my chart with "stage 4" on it. She tried to save me right in the office! I went to a different dentist. ( I was already scared because I'm on xgeva.)
Nel,that's almost hilarious if it weren't so inappropriate! I'd love to get to 60!!!! I'll be 55 in a week. That's so weird for a psychiatrist to say that to a cancer patient!
Devine Mrs. M,
I agree with everything you said. I did confront her and she did half apologize but obviously our friendship will never be the same. I give her a little extra room because she's having such a rough go of it. I refused some treatments that she agreed to. I'm sure she thinks, like Romansma's mother, that I'm not fighting hard enough.
I'm doing what's right for me. So far so good.
Romansma, how could your mother think you aren't fighting! I've read your treatments and you are fighting hard! I'm glad you backed her off.
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