Beyond words, disappointed, and "I dont understand?"

pinkkari09
pinkkari09 Member Posts: 877
Below is a PM that I received from Kay U/N heart-in-hand. I'm sure I don't know her and assume she wouldn't know me as well. I didn't know what to say that wouldn't include a big piece of my mind.. I meditated on it for a couple days before I decided that I'm not going to reply, However she came up with this lay down and die thing is beyond me. Anyone who knows me, knows I'm always on the go, even sick, but this isn't about me. I can let this garbage go in one and out the other, maybe that wouldn't be so with someone else. I was so excited to get back in touch, share my story etc., I then purchased a keyboard for my iPad so I can whip it out and get back in touch with the most amazing group I've ever joined I've left this here because I wanted to hear what you all thought, only because I refuse to reply, I'm not in the best of spirits/moods lately which would shine bright. It could also have me reading to far into this beings my whole world is getting stirred messy again. Sorry if I've offended anyone, that would never be my intent. Thank goodness for all the cards, PM's, and encouraging words, MILES OF LOVE, ~Kari



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From: heart-in-hand
To: pinkkari09
Subject: I don't understand?
Date: Fri, 11/02/2012 - 1:27pm

Are you laying down to die? Is that what I am reading between the lines?

Kay

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Comments

  • mamolady
    mamolady Member Posts: 796 Member
    Kari,
    I get your confusion.

    Kari,
    I get your confusion. I am not sure the intent or what she is asking. I think you have the right idea to not respond. Sometimes you just have to "delete" and don't think about it anymore. I can't imagine it was meant to be hurtful, so don't let it be.
    I think you need to only read the good stuff! At least for this evening. Hopefully the messy gets a little better this week.

    Take care,
    Cindy
  • New Flower
    New Flower Member Posts: 4,294
    mamolady said:

    Kari,
    I get your confusion.

    Kari,
    I get your confusion. I am not sure the intent or what she is asking. I think you have the right idea to not respond. Sometimes you just have to "delete" and don't think about it anymore. I can't imagine it was meant to be hurtful, so don't let it be.
    I think you need to only read the good stuff! At least for this evening. Hopefully the messy gets a little better this week.

    Take care,
    Cindy

    Sorry that you have been hurt
    I am sure she will apologize.
    Please know that you always can count on our unconditional support and love.
    Hugs
  • New Flower
    New Flower Member Posts: 4,294
    mamolady said:

    Kari,
    I get your confusion.

    Kari,
    I get your confusion. I am not sure the intent or what she is asking. I think you have the right idea to not respond. Sometimes you just have to "delete" and don't think about it anymore. I can't imagine it was meant to be hurtful, so don't let it be.
    I think you need to only read the good stuff! At least for this evening. Hopefully the messy gets a little better this week.

    Take care,
    Cindy

    Sorry that you have been hurt
    I am sure she will apologize.
    Please know that you always can count on our unconditional support and love.
    Hugs
  • carkris
    carkris Member Posts: 4,553 Member

    Sorry that you have been hurt
    I am sure she will apologize.
    Please know that you always can count on our unconditional support and love.
    Hugs

    perhaps she doesnt know your
    perhaps she doesnt know your story. echo what Olga has said.
  • camul
    camul Member Posts: 2,537
    Apparently,
    she does not know you and all you have been through. I would do whatever it takes to let this one go as it does not deserve a response, nor is it worth your energy. When I was told 3 months ago no more chemo, I was asked if this meant I was giving up the fight. Sometimes when your body does not respond to any treatment, there is no fight to give up.

    This is when it becomes quality over quantity, and quantity isn't even an option when your tumors are unresponsive to the available treatments.

    Kari, whatever you decide at any point, we are behind you.

    Hugs and prayers,
    Carol
  • mollyz
    mollyz Member Posts: 756 Member
    camul said:

    Apparently,
    she does not know you and all you have been through. I would do whatever it takes to let this one go as it does not deserve a response, nor is it worth your energy. When I was told 3 months ago no more chemo, I was asked if this meant I was giving up the fight. Sometimes when your body does not respond to any treatment, there is no fight to give up.

    This is when it becomes quality over quantity, and quantity isn't even an option when your tumors are unresponsive to the available treatments.

    Kari, whatever you decide at any point, we are behind you.

    Hugs and prayers,
    Carol

    Just my opinion!!
    I think she read a post with every one saying they're sorry for what your going thru and went from there i myself really don't think she meant anything bad i can't find the post right off but i read one but i didn't chime in because i didn't know your story,but from what i read you where a fighter and not rolling over to this. I hope she can clear this up sometimes if we don't know we should just pray for that person and not say anything.Like camul said we are behind you and we love you dearly.~~MollyZ~~
  • pinkkari09
    pinkkari09 Member Posts: 877
    Thank you.
    Perhaps no harm was meant and it very well could be me. I've had to make some very hard choices lately, Ive been stressed,, and I'm super upset with how things turned out for me, meaning in the back of my mind i wonder if another clinic wouldn't have saved me, like mayo, whole other story. I'll do my best to let this one go and I appreciate all of your opinions, always.
    Miles of Love
    ~Kari
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member

    Thank you.
    Perhaps no harm was meant and it very well could be me. I've had to make some very hard choices lately, Ive been stressed,, and I'm super upset with how things turned out for me, meaning in the back of my mind i wonder if another clinic wouldn't have saved me, like mayo, whole other story. I'll do my best to let this one go and I appreciate all of your opinions, always.
    Miles of Love
    ~Kari

    Kari, I am not sure any harm
    Kari, I am not sure any harm was meant, at least I sincerely hope there wasn't! With that said, unless one is in the same situation, being told chemo is not working and is not going to work, I am not sure you can really comprehend the situation. Like I said on my previous reply to your news, I admire you and am thankful for the opoporunity to "know" you and have all the kudos for you for what you have had to endure. You are a fighter and have always been. I am sorry you wasted even 1 second thinking otherwise.

    Please don't beat yourself up thinking if you had gone to another clinic, like Mayo, your story would/could be different. I can tell you that I am going to Mayo and I have been dx as Stage IV since June 2011. I am on my second type of chemo and will know Thursday, after my scans, if it is still working or if I need to switch to another one. Unfortunately, there is no cure! Not that I don't hope that some miracle will happen and we will ALL be cured. I can only hope that when my body gets to the point of "no more chemo", that I can be as gracious as you! I truly admire your guts!!

    I am here for you sister and sending lots of love and (((hugs))).

    Debbie
  • Kathryn01
    Kathryn01 Member Posts: 1
    All I can think is she must
    All I can think is she must be feeling very insecure right now to have said such an insensitive thing. It is a personal decision we all may have to face. You are a courageous, kind, understanding person. I will choose the same thing as you when, or if, I get to that same point in my disease. My thoughts and prayers are with you.
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member

    Thank you.
    Perhaps no harm was meant and it very well could be me. I've had to make some very hard choices lately, Ive been stressed,, and I'm super upset with how things turned out for me, meaning in the back of my mind i wonder if another clinic wouldn't have saved me, like mayo, whole other story. I'll do my best to let this one go and I appreciate all of your opinions, always.
    Miles of Love
    ~Kari

    My own initial response?
    Anger. Pure and simple anger. Which is very uncharacteristic of my nature.

    Am in agreement with everything posted here (so far). And believe the best thing for you, dear Kari, is to delete the PM and ignore it, without a direct response. As you intend to do. Providing the author with the 'benefit of doubt' allows for forgiveness. Already freely given by many who've posted, which is admirable. Maybe she doesn't know your entire story, hasn't been here with you over these past several years. Still...

    Allowing for the writer's possible lack of knowledge... From my own personal perspective, does not excuse her. Six of one, half dozen of the other. Doesn't really matter if she's completely aware of your current situation and all that's led up to it, or not. Either way - her message seems extremely judgmental, critical and horribly mean-spirited. And so cowardly to send via Personal Message, privately, vs. open thread for all to see.

    I cannot imagine how anyone (clarifying: any basically decent person), under any circumstances, could direct those words to someone in your position.

    Again, shame on her.

    I truly hope this doesn't scare you away from the site, Kari. Especially now, when you need us more than ever before. She (I cannot even bring myself to type her 'name') is only one bad apple in the whole bunch. You hold in your hand the hearts of so many of us here - including mine. Always will.

    A long time ago, when I was a new member - was warned by another: just because someone's a fellow breast cancer survivor doesn't automatically mean she's a nice person. She was absolutely correct. Those words are now ringing in my ears, yet again.

    You are not a quitter. You never have been, and certainly are not now. You've accepted your reality with an enormous amount of courage, grace and dignity.

    Sending many miles of love backatcha,

    Susan
  • eihtak
    eihtak Member Posts: 1,473 Member
    Confusion...
    That one word probably sums up soooo many aspects of this journey! As great as things like internet, texting, ect. are I always tell my kids to be careful not to mis-understand things when you don't have the "human touch" ( you know, like an old fashioned phone call or face to face conversation) My bet is she feels horrible right now for making you feel so. Best advice... put that comment in a bubble and blow it away! Concentrate on whatever it is that will make you smile today. As always, all in my prayers.
  • 1surfermom
    1surfermom Member Posts: 396 Member
    eihtak said:

    Confusion...
    That one word probably sums up soooo many aspects of this journey! As great as things like internet, texting, ect. are I always tell my kids to be careful not to mis-understand things when you don't have the "human touch" ( you know, like an old fashioned phone call or face to face conversation) My bet is she feels horrible right now for making you feel so. Best advice... put that comment in a bubble and blow it away! Concentrate on whatever it is that will make you smile today. As always, all in my prayers.

    Wildly inappropriate
    I also don't understand.What on earth was this person trying to convey? Perhaps I'm dim witted but I can't possibly see how anyone could read a comment like that and find it to be innocuous. I agree with Susan sometimes we expect everyone to be nice but unfortunately it isn't always the case. Love Surf
  • mom62
    mom62 Member Posts: 604 Member
    Insensitive
    Hi Kari,

    Since she just started on the board she doesn't know your history and all the fighting you have done along the way. I think she didn't mean to be insensitive (I hope) and just didn't get your posting. I think you are right not to answer and keep all negativity out of your life at this point. I admire and applaud you every day. You have made choices that I too have talked about with my husband if things should get to that point in my treatment. We all support and love you hear and want you to enjoy every day you have with your family and friends. What you are sharing with us in unpresidented and maybe some people can't handle that. I find it beautiful, just like you. Thank you for sharing this way we can help you help Kay understand.

    Miles of love and hugs,
    Terry
  • Skeezie
    Skeezie Member Posts: 586 Member

    Wildly inappropriate
    I also don't understand.What on earth was this person trying to convey? Perhaps I'm dim witted but I can't possibly see how anyone could read a comment like that and find it to be innocuous. I agree with Susan sometimes we expect everyone to be nice but unfortunately it isn't always the case. Love Surf

    Totally agree with Christmas Girl
    I tkink she hit the nail on the head. I looked up Heart-In-Hand and she joined on 9-28-12. She has not posted any of her story....

    I think her PM was cruel and heartless and as was said by Christmas Girl, not everyone here is a nice person. If there is one place we can fall softly with our pink sisters closing ranks it is on this board. Please Kari, don't let one foolish and thoughtless comment keep you from your friends here who love you. We all need each other. Although I am shocked at comment, especially the cowardice of it being a PM so no could comment, I guess the world is made up of all kinds. Koodos (spelling?) to you for publishing it. Please try to put her out of your mind and enjoy your new keyboard!

    We all run the "could have, should have" thru our minds, please don't. You have worked so hard these past 3 years, no one could have fought harder, your medical team always sounded right on.

    We all love you and are with you 100% of the way.

    "Miles and Miles" of Hugs,
    Judy :-)
  • Dot53
    Dot53 Member Posts: 239 Member
    Dear Sweet Kari..
    I cannot for the life of me understand why anyone would do a thing like that.. It really upsets me to think that another pink sister would be so callous..

    I guess there will always be someone who has something negative to say but remember there are many of us who love you and are here for you.. I agree with the others just ignore the email..it's not worth a minute of your time..

    Mountains of love & hugs,
    Dotxxoo
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    Sweet Kari -- I am not going
    Sweet Kari -- I am not going to assume the intentions of the person who wrote that, but I do see an angry tone. Regardless, it should have never been said. Or perhaps, her emotions should have shown differently. But I always say, you can't control other people's actions or what they think...and how they say things. I would do what your heart tells you to do. If you feel you need to ask why, then do so. If it is not that important, I would let it go. I personally think only WE know what needs to be let go and what needs a discussion. And some things may seem so small to others, but sometimes they hurt. I don't believe (refuse to believe), her intentions were to hurt you. I wouldn't stress too much however, because you're loved and cared for on this forum. Please believe that.
  • lintx
    lintx Member Posts: 697

    Sweet Kari -- I am not going
    Sweet Kari -- I am not going to assume the intentions of the person who wrote that, but I do see an angry tone. Regardless, it should have never been said. Or perhaps, her emotions should have shown differently. But I always say, you can't control other people's actions or what they think...and how they say things. I would do what your heart tells you to do. If you feel you need to ask why, then do so. If it is not that important, I would let it go. I personally think only WE know what needs to be let go and what needs a discussion. And some things may seem so small to others, but sometimes they hurt. I don't believe (refuse to believe), her intentions were to hurt you. I wouldn't stress too much however, because you're loved and cared for on this forum. Please believe that.

    Hi Kari
    In general I don't like emails or texts when 1,000 different tones and meanings can ramble through our brains. There is no face to face or voice behind those messages. Know what I mean? What I do know is how your miles of love caught my eye when I finally got the courage to join and post on here. You were one of the people encouraging new members like myself. Everytime I see Pinkkari posting, I want to read it. I look for you on here! My take on the pm is that she chose poor wording. I can't imagine anyone being mean to you:) I hope you have a great week. Hugs, Linda
  • AMomNETN
    AMomNETN Member Posts: 242
    Puzzled
    I'm puzzled by that one. I think you are a very courageous lady. I think you are doing what is right for you. I wouldn't pay it any mind myself or I'd make some **** remark back. This is me tho. You are in my prayers and I hope I have your courage.
  • carkris
    carkris Member Posts: 4,553 Member
    AMomNETN said:

    Puzzled
    I'm puzzled by that one. I think you are a very courageous lady. I think you are doing what is right for you. I wouldn't pay it any mind myself or I'd make some **** remark back. This is me tho. You are in my prayers and I hope I have your courage.

    I dont think any harm was
    I dont think any harm was meant. When you are a newbie at this its all hard to understand.I love the vision of putting it in a bubble and blowing it away. We love you Kari girl
  • SIROD
    SIROD Member Posts: 2,194 Member

    Thank you.
    Perhaps no harm was meant and it very well could be me. I've had to make some very hard choices lately, Ive been stressed,, and I'm super upset with how things turned out for me, meaning in the back of my mind i wonder if another clinic wouldn't have saved me, like mayo, whole other story. I'll do my best to let this one go and I appreciate all of your opinions, always.
    Miles of Love
    ~Kari

    Your Decision Was The Right One!
    Kari:

    I don't know you but I have been reading your posts since I've logged on. You join the ranks of all the brave fighters that I have known in life and online. You have faced the many trials that so many other women and men who are dealing with stage IV now, and in the past, do and have had to endure. You made a very difficult decision that many have to make when they reach the part of the journey when the treatments become more lethal than the disease.

    In the book title "Her2" by Robert Bazell there was a piece I copied.

    ...With it’s return the disease assumes a new status, becoming what doctors euphemistically term “treatable but not curable”. The battle may drag on for years, but the cancer always wins.... Page 19 Chapter 2...

    It was written a few years ago. I haven't read anything that has changed the facts of that statement. There is hope down the line, dealing with the tumors DNA sequencing and finding the mutation that fuels the growth and the right drug. It is not for you, me or the many who are dealing with stage IV now. It will be for those who come after us. You made your decision and it was the right one for you.

    I am an agnostic but always found comfort in the lines from Ecclesiastes: To everything there is a season, and a time to every purpose under the heaven....

    I believe the lady is a newbie who sent the email and is not familiar with the many aspects of breast cancer. It is a difficulty disease to understand and being a toss in a world so very unfamiliar with endless information. After 19th years with this horrible disease, I still learn new information. The written word doesn't often convey what is really meant. We could all read the same sentence and come up with different meanings, depending on are own experiences and mood.

    Wishing that the coming days, and weeks you will find some joy.

    Best to you,

    Doris