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

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Comments

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    Kari,
    I have to assume that

    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
    MsGebby Member Posts: 659
    Gosh
    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
    RE Member Posts: 4,591 Member
    Unaware
    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
    HootieGirl Member Posts: 85
    This is NOT okay.
    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
    ppurdin Member Posts: 1,181
    So sorry
    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
    ppurdin Member Posts: 1,181
    So sorry
    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
    ppurdin Member Posts: 1,181
    So sorry
    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
    salls41 Member Posts: 340
    My opinion
    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
    heart-in-hand Member Posts: 92
    Astonished
    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
    CypressCynthia Member Posts: 4,014 Member

    Astonished
    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

    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
    New Flower Member Posts: 4,294

    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.

    Please forgive each other
    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
    Double Whammy Member Posts: 2,832 Member

    Please forgive each other
    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

    Ditto, New Flower
    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
    laughs_a_lot Member Posts: 1,368 Member
    Well awkward words initially;
    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
    Lynn Smith Member Posts: 1,264 Member

    Well awkward words initially;
    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.

    I don't think she meant
    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