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

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

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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mamolady's picture
mamolady
Posts: 795
Joined: May 2011

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
Posts: 4140
Joined: Aug 2009

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

New Flower
Posts: 4140
Joined: Aug 2009

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

carkris's picture
carkris
Posts: 4529
Joined: Aug 2009

perhaps she doesnt know your story. echo what Olga has said.

camul's picture
camul
Posts: 2139
Joined: Dec 2010

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's picture
mollyz
Posts: 739
Joined: Sep 2010

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's picture
pinkkari09
Posts: 878
Joined: Sep 2009

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's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

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

Christmas Girl's picture
Christmas Girl
Posts: 3661
Joined: Apr 2009

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

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

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

Kathryn01's picture
Kathryn01
Posts: 1
Joined: Nov 2012

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.

eihtak
Posts: 887
Joined: Oct 2011

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's picture
1surfermom
Posts: 269
Joined: Mar 2009

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

Skeezie's picture
Skeezie
Posts: 585
Joined: Aug 2009

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 :-)

mom62
Posts: 601
Joined: Mar 2004

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

Dot53
Posts: 238
Joined: Nov 2009

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's picture
LoveBabyJesus
Posts: 1659
Joined: Jan 2011

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's picture
lintx
Posts: 456
Joined: Sep 2012

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
Posts: 242
Joined: Apr 2010

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 smartass remark back. This is me tho. You are in my prayers and I hope I have your courage.

carkris's picture
carkris
Posts: 4529
Joined: Aug 2009

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

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

Kari,

I have to assume that Kay is either ignorant of your situation (giving her the benefit of the doubt-which, BTW, she doesn't give you) or she is mental. Either way, please don't give this another thought.

You are one of the most courageous warriors out there and I truly love you. Your amazing spirit shines through every post.

And by the way, it is a complete myth that hospice means that you are "laying down to die." The reason palliative care is being advocated for ALL cancer patients is because of the surprise finding in studies that hospice EXTENDS life. How is that possible? Well (my opinion), 1) our therapies are sometimes very toxic and a rest may help us heal and 2) pain management extends both quantity and quality of life.

Comparing Hospice and Nonhospice Patient Survival Among Patients Who Die Within a Three-Year Window

So, fight on with hospice Kari! All of us with Stage 4 have thought long and hard about what we are going to do next and, I have always said, I want to do exactly what you are doing when I cross the bridge that you have crossed. I hope I have your lovely voice and your amazing courage. Thank you, thank you for being an inspiration. Big, huge hugs!

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

I'm not sure what the intent was from Kay. What I sort of think is she may have thought that hospice care means (__________) I can't even write the words. What I'm reading between her 2 lines is .... she is frightened. Possibly of her own destiny. Fear makes people do and say things OUT LOUD rather than trying to understand a bit more silently.

That's just my take.

However, it is insensitive to utter those words. My heart cries when one of my sisters is having to make such an unspeakable decision. I too am frightened when I hear what this disease can do. But this is life and we all can learn from each other when faced with the most difficult decisions in life.

I am in agreement with the others. I believe that this is one PM you might want to push to the curb and wait for the trash collectors to pick it up. You have so much living to do and the best thing you can do ... is live it.

I applaud your courage and tenacity through it all. You are a role model in more ways than one.

SO ... I have a question for you ... when life throws you lemons, what do you do with them? *grin*

Luvya,
Mary

RE's picture
RE
Posts: 4630
Joined: Feb 2004

Kari you are wise not to respond as it is my belief that this person is unaware of your story and all you have been through and made a huge leap of poor judgement to send a rather off the cuff note most likely in the hopes of shocking you into perhaps changing your decision. I have gone to her page on CSN and she has only been here for a month and has not offered her story for us to read so it is difficult to know even if this person has cancer at all. It may be someone who is a family member of someone who has cancer and in that case they would see things quite differently.

We have YOUR back, we are here for YOU, we love YOU, we understand YOUR choice and want to be here for you as you have always been here for us.

Much Love!!!!

RE

HootieGirl's picture
HootieGirl
Posts: 85
Joined: Feb 2011

Kari,

Okay I am going to be as polite as humanly possible, but this post makes me absolutely furious. How dare someone- ESPECIALLY A PINK SISTER -say something like this to you. This absolutely disgusts me. No one knows what you are dealing with. We are all here fighting this horrible disease, but in no way is your experience the same as anyone else's. We are all given different circumstances and how can you judge someone for the decisions they make when you have every right to do whatever the hell you want. This is YOUR LIFE. Don't let anyone tell you how to live it. The whole point of this board is to be supportive and encouraging and in my opinion, if you are going to private message someone and say something so ridiculously offensive, then you have no right on here. I don't believe that you are laying down to die. You are enjoying every moment you are given and choosing to actually LIVE. Quality of life has always been my highest priority, so I completely understand and back you 100%. You are a freakin rockstar. Don't let anyone else question that. So sorry that you even had to waste your time being confused/hurt/repulsed by this message. Continuing doing what you're doing and forget about this dumb message. You are such a blessing to so many of us and we are all standing behind you a million percent. Praying so hard for you! Keep up that fighting spirit! It truly is amazing!

xx
Kat

ppurdin's picture
ppurdin
Posts: 940
Joined: Jul 2009

I am sorry her words hurt.Surly no one would intently be as mean as it sounds.Some people say things without thinking it out.Don't give up on this web sight.Their is the most wonderful people on here.They helped me so much when I was fighting Cancer.I started a blog on stupid things people say when we are fighting Cancer.You had to laugh at the silly stuff they say or cry.I prefer laughing..I will see if someone knows how to bump the message up again.We have all heard it.When I was getting ready to have my Lumpecktomy and maybe Masectomy my niece was their and she told me she would love to get both her breast removed because they were heavy to carry,I wanted to grab her and scream at her.I chose to think she dint have a clue how I was feeling.And what it felt like to be in my shoes.I Pray she never does.Take care.Love and Prayers.Pat. Please forgive my misspellings.

ppurdin's picture
ppurdin
Posts: 940
Joined: Jul 2009

I am sorry her words hurt.Surly no one would intently be as mean as it sounds.Some people say things without thinking it out.Don't give up on this web sight.Their is the most wonderful people on here.They helped me so much when I was fighting Cancer.I started a blog on stupid things people say when we are fighting Cancer.You had to laugh at the silly stuff they say or cry.I prefer laughing..I will see if someone knows how to bump the message up again.We have all heard it.When I was getting ready to have my Lumpecktomy and maybe Masectomy my niece was their and she told me she would love to get both her breast removed because they were heavy to carry,I wanted to grab her and scream at her.I chose to think she dint have a clue how I was feeling.And what it felt like to be in my shoes.I Pray she never does.Take care.Love and Prayers.Pat. Please forgive my misspellings.

ppurdin's picture
ppurdin
Posts: 940
Joined: Jul 2009

I am sorry her words hurt.Surly no one would intently be as mean as it sounds.Some people say things without thinking it out.Don't give up on this web sight.Their is the most wonderful people on here.They helped me so much when I was fighting Cancer.I started a blog on stupid things people say when we are fighting Cancer.You had to laugh at the silly stuff they say or cry.I prefer laughing..I will see if someone knows how to bump the message up again.We have all heard it.When I was getting ready to have my Lumpecktomy and maybe Masectomy my niece was their and she told me she would love to get both her breast removed because they were heavy to carry,I wanted to grab her and scream at her.I chose to think she dint have a clue how I was feeling.And what it felt like to be in my shoes.I Pray she never does.Take care.Love and Prayers.Pat. Please forgive my misspellings.

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

I have had communication with Heart-in-Hand as well as some of you have. I do not know her personally. I believe this comment has been totally misinterpreted. But again, I don't know anything for sure. It is not how I would have asked you Kari if your post meant there was no other option. I do not think that Heart knows your story. What I know of Heart is she is overwhelmed by this dx and the process of returning to good health. Her journey so far has not been easy. Chemo was hard on her, her doctors have not been the best, she is beginning her radiation, and has little family support, very few friends. She comes to the boards as many of us do for hope and we have given this to her time and time again.... and I believe Kari that your post was probably the first post she ever read that was the reality that sometimes yes we do lose a pink sister to this horrid beast! Her hope of returning to a normal healthy life slipped out from under her. Read her subject line again.. it states "I don't understand". For months and months we have cheered her on that this whole process is doable and there is light at the end of the tunnel. But reading your post put her light out in her tunnel. We all deal with our dx differently. Some accept it and tackle it and move on.. some breakdown and have a hard time accepting it. I believe Heart to be one that is struggling with her journey.
Again, I do not know for a fact that the PM was not meant to be malicious. I choose to believe that it is not. I hope that you re read it in the spirit of a confused sister that truly does not understand. Crudely stated by all means, but the fear that death may be a tru possibility even after all of the treatments and hell we go through is the last option is what she is asking. She is asking why you are choosing to accept it.
Now for me, I applaud your decision.. I pray that each and every day is an adventure of a lifetime for you. I know that God in His wisdom had a plan for your life and I believe part of His plan for you was to touch all of us and to give us the courage and the strength to fight our battle with dignity and grace as set bet your example. God Bless you dear Kari. xoxoxo
Sandy

heart-in-hand
Posts: 92
Joined: Sep 2012

I was broken hearted to read the posts. I loved you Kari. I didn't want you to give up and die. I loved you.

Apology? Absolutely!! I never meant to hurt you at all. I loved you. As well I loved all of the other sisters. Did I ever post anything that could be construed otherwise? My heart and head bowed in prayer for you. I am very sorry that it came over that way. Please please please, not only you but also all of my sisters know that I loved you. I really did love you.

Goodbye and sending hope, sweet hope to you and all my sisters in the battle.

My true name:
Rebecca

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

Rebecca, Choosing hospice and "giving up and dying" are two totally separate issues. End of life treatment should be between an individual and her or his physician.

I am sorry that you are broken hearted and I know we will move on here, if you decide to stay. All of us have been guilty at times of forgetting to engage our brains before opening our mouths. Of course, I accept your apology.

New Flower
Posts: 4140
Joined: Aug 2009

I really hope we can forgive each other and move on
Unfortunately, there is so much hardship among us, very overwhelming and difficult to find the right words

Double Whammy's picture
Double Whammy
Posts: 2338
Joined: Jun 2010

Let's forgive each other, and BELIEVE that we all have each other's best interests at heart. At different stages of our individual journeys, we experience and feel different things. And sometimes we say things that come across hurtful, but I really doubt any of us means to be hurtful. And it's ok to say "your comment hurt me". I believe that.

Love you all,
Suzanne

laughs_a_lot's picture
laughs_a_lot
Posts: 1369
Joined: Mar 2011

especially now that we have heard from her with further explaination. Kari, it is like this. Forgiveness is probably a good idea. Remaining angry takes so much energy. I think focussing your energy on personal peace and making the remainder of your time as easy and pleasant (or as close to pleasant as one can get given the circumstances) as possible would be doing yourself a favor.

And of course it would also be good for heart-in-hand as well as the entire group. Cancer has already robbed us so so much. Let's not let it rob us further with any bitterness.

Lynn Smith
Posts: 1265
Joined: Mar 2011

I don't think she meant to be insensative. Like someone said she might be a newbie.Just starting her battle and is going to fight. You've been fighting and tired. I think about what I might do if I had to face a decision like yours.I always thought I would stick it out but not so much anymore. Whatever I decide I want to be as brave as you.I bet she is upset now and doesnt know what to say to you.

I've had so many people asking me if my cancer is back.I've lost weight but I had a sickness.It isn't cancer but they are so insensitive.I couldn't ask a friend or someone I hardly knew such a crude question but many people have asked me that. A few I don't think I will be talking to in the future.

This is a hard battle(it's with us forever) and the last thing we need is someone to make us more miserable than we already are. Just what I get to much.

I had a correction to make on this post and just before I made it I saw where Rebecca came to say she was sorry.Like I said she is probably new to having been dx with cancer and doesn't understand the fight you've put up since you started this battle.

Thinking of you Kari.You've changed some thinking for me about decision making.

Lynn Smith

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