I don't know what to say

Lisa13Q
Lisa13Q Member Posts: 677
It's been exactly 5 months since my mother died of this disease. I lurk on the board. I come and see new names and want to offer hope and support....and realize I haven't any to provide. then I see Linda P's post and am sickened. Then I see old names who were my life for so long, LeesaG, Carlene Hissy Fitz, Kayandok, and am soo thrilled they are still hanging in....In many ways I don't feel like I belong here anymore as my mother's fight is over and I am cancer free. This board has just become another loss like so many I realize I am grieving since the death of my mother. I haven't spoken to my brother for numerous reasons....my sister and I are trying to put lives back together....I may want a divorce....and now Linda P. I am headed to Phoenix for the winter. I leave November 11th....for 3 months....with my spouse....I am going to train my new little puppy for agility. I wish I could do something to fight this disease.... I am just deeply saddened again by Linda's post.....I want this cancer to go away.......I would like to be happy again....i want to go back to pre-cancer......i know that will never happen...and I feel such respect for all of you..and soo sorry you have to have this illness....
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Comments

  • leesag
    leesag Member Posts: 621 Member
    Lisa,
    I lost my mother to

    Lisa,

    I lost my mother to mental illness when I was 20. Quite honestly, there is no easy way to get past the pain of a loss like that. 26 years later, I still tear up when I talk about her for extended times. Cancer sucks, I won't deny that at all, but the grief that you're feeling will gradually be replaced with the fond memories that you shared with your mom.

    You are always welcome here, but we also understand if you need to move on (and you will someday if not right now.) As for those of us who continue to press on....and those of us who will eventually rest... I am fond of this poem:
    Native American Prayer

    I give you this one thought to keep -
    I am with you still - I do not sleep.
    I am a thousand winds that blow,
    I am the diamond glints on snow,
    I am sunlight on ripened grain,
    I am the gentle autumn rain.
    When you awake in the morning's hush
    I am the swift, uplifting rush
    Of quiet birds in circled flight.
    I am the soft stars that shine at night.
    Do not think of me as gone -
    I am with you still - in each new dawn.


    My body may not always be here, but my spirit will remain. ;)

    Hugs Honey!

    Leesa
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    leesag said:

    Lisa,
    I lost my mother to

    Lisa,

    I lost my mother to mental illness when I was 20. Quite honestly, there is no easy way to get past the pain of a loss like that. 26 years later, I still tear up when I talk about her for extended times. Cancer sucks, I won't deny that at all, but the grief that you're feeling will gradually be replaced with the fond memories that you shared with your mom.

    You are always welcome here, but we also understand if you need to move on (and you will someday if not right now.) As for those of us who continue to press on....and those of us who will eventually rest... I am fond of this poem:
    Native American Prayer

    I give you this one thought to keep -
    I am with you still - I do not sleep.
    I am a thousand winds that blow,
    I am the diamond glints on snow,
    I am sunlight on ripened grain,
    I am the gentle autumn rain.
    When you awake in the morning's hush
    I am the swift, uplifting rush
    Of quiet birds in circled flight.
    I am the soft stars that shine at night.
    Do not think of me as gone -
    I am with you still - in each new dawn.


    My body may not always be here, but my spirit will remain. ;)

    Hugs Honey!

    Leesa

    YOU DO BELONG HERE
    we all really need you. You have been part of our lives for a very long time. Please feel free to post. you always put a different spin on things. I know it has been very hard for you. I pray you can work out your family issues. A new puupy sounds like fun. A move to Az. for a while will be good for you too. Some new sisters are very young and could use your ideas or comments. We are here and we need you...val
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    Phoenix
    You are coming to my town well kinda I am in glendale you should post when you get here and maybe if I am up to it we can meet

    Anne
  • marilyn jarvis
    marilyn jarvis Member Posts: 2
    I have a daughter too
    Hi Lisa13Q I'm new to this site and so glad I read your comments. I have Ovarian 3C and have been in remission for 3 months and yes I'm fighting this disease and hoping to win. My youngest child and only daughter has been an angel through all this. I love her dearly and if I died I wouldn't want her to grieve too long and I certainly wouldn't want my death to affect her life the way it's affecting yours. It's bad enough that she felt she had to go through this journey with me - I never was too happy about that. Like you, she took my cancer on as her fight to help me and I let her because I knew that this was what she needed to do. Your Mom and all the rest of us who have this life threatening disease are on our own journey and we may have to leave this world but I firmly believe that your Mom's soul and my soul will still be around to keep you girls in line when we're not around anymore. The reason I believe this is because I can feel my own Mom around at times, especially when I need her and she died many years ago. So please do not grieve too much longer because I know for sure that this is not what your Mom would want for you.
  • mopar
    mopar Member Posts: 1,972 Member
    HUGS TO YOU, LISA
    A great loss such as yours is never easy to 'get over'. Five months is really not a long time. I say that because, for me, all the 'firsts' seemed to be difficult - the first Christmas, the first birthday, etc., etc. Those events seemed to bring it home even more as each were celebrated without our loved one. October 23'rd was the 7th anniversary of my mother's passing from colon cancer. To this day I consider myself blessed to have been with her as she took her last breath. As difficult as it was for me, I was comforted knowing she was not alone, and that it was a final small-something that I could do for her after all she had done for me all of my life.

    Once a member here, ALWAYS a member! We are still here for you no matter what. Our commonality with your mother is what brought you here, and it makes you no-less appropriate to be here now. Linda Dorian's daugther still keeps in touch from time to time. Other caregivers stay connected. And it's the simple fact that cancer has touched our lives in one way or another that binds us together.

    We all want this dreaded disease to go away. There is no rhyme or reason to it, no consistency, nothing to truly count on one way or the other. The only thing we CAN count on is eachother, and the hope and faith we all have personally and collectively.

    Enjoy Phoenix - soak up the sun, think on all the good memories of Mom. And training your puppy is going to be great therapy! I miss our precious pooch so much (we lost her last year). She was my 'medicine' every day, especially since we got her when I was first diagnosed in 2000. Losing her was definitely like losing a part of me. Now we have 2 grandsons who are our 'medicine' now!

    Love, Hugs, Prayers,
    Monika
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member

    I have a daughter too
    Hi Lisa13Q I'm new to this site and so glad I read your comments. I have Ovarian 3C and have been in remission for 3 months and yes I'm fighting this disease and hoping to win. My youngest child and only daughter has been an angel through all this. I love her dearly and if I died I wouldn't want her to grieve too long and I certainly wouldn't want my death to affect her life the way it's affecting yours. It's bad enough that she felt she had to go through this journey with me - I never was too happy about that. Like you, she took my cancer on as her fight to help me and I let her because I knew that this was what she needed to do. Your Mom and all the rest of us who have this life threatening disease are on our own journey and we may have to leave this world but I firmly believe that your Mom's soul and my soul will still be around to keep you girls in line when we're not around anymore. The reason I believe this is because I can feel my own Mom around at times, especially when I need her and she died many years ago. So please do not grieve too much longer because I know for sure that this is not what your Mom would want for you.

    (((LIsa))). I'm so sorry that my story has sharpened your grief
    I took each death on this Board very hard, very personally, and know the dispair you talk about. For something so universal and inevitable, death still seems to catch us all unprepared and brings back all of those 'meaning of life' questions, and grief that was getting manageable feels fresh and sharp again. I'm so sorry that I now bring this reality here to the forefront again. I struggled with whether I should tell the final twists and turns of my journey. If it is too painful or frightening, just tell me, and I can keep the details to myself. I have a wonderful support system with my family and friends. I would sure understand; just let me know.

    For me, Bonnie's almost-daily posts on CaringBridge allowed me to see how it might be at the end. As much as it hurt, Bonnie set the bar high on how to pass from this world to the next with incredible grace and until her last breath, she never stopped being the generous loving woman and the relentless FIGHTER we all knew her to be.
    With Linda Dorian, posting from the hospital, she completely opened up with her fears and worries about Meghan, and her dismay at her swollen legs and belly, and tooth-pick arms. Her vulnerability in showing the human side of dying taught me that this was okay, too. Better to be genuine.
    And I guess Nancy's final weeks hurt me the most, for we both had papillary serous cancer, were diagnosed the same month, 1st recurred the same month, and had our CA125 hit the stratosphere at the same time (and never went back down). Because of that, we had a special bond. It seemed we were on the same path, but I never thought she'd get to the end before me. I can't even talk about how sad and painful Nancy's death was for me, and won't go there now. But Nancy's final weeks probably are shaping my own self-care plan more than anyone's. In Hospice care, the materials all say that you don't have to eat if you don't feel like it, and caregivers are told they needn't force fluids. And you can't even imagine how much you DON'T want to eat when your digestive system in full of cancer; it makes you so uncomfortable. But I am drinking 4 cans daily of a 'medical food' so that I know I have at least 1000 calories and all the protein and vitamins/minerals to support life. Then I take a pain killer a half-hour before mealtimes, so that I am comfortable and so that I can easily eat at least something. And if it's something YUMMY, sometimes I can eat it all.

    I'm way off track here. I really just wanted to give you a hug ((((Lisa)))) and find out if anyone else here would really like to see what hospice is like and if I should post details.
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    Lisa
    Time is your friend and your new puppy :) We love to hear from you because you are family here. If you graduate to not needing us that is a good thing. This board is like life itself always changing, good news ,bad news and everything in between.
    I love that poem that was posted I would like my children to think of me that way when the time comes. Linda anything you can share is greatly appreciated and I hope that you can lean on us if you need to. We are bound by terrible circumstances but there is something special on this board that I am so thankful to be a part of. I consider each one of you as my extended family.
    Colleen
  • kayandok
    kayandok Member Posts: 1,202 Member
    Hi Lisa,
    thanks for sharing your thoughts. I have been wondering about how you were, and was about to send you a PM. So I am happy to read your thougths tonight.

    I have never lost a parent, but have great compassion for you in the compliated issues that all land on your heart and shoulders, you can never be prepared to face.

    I love reading your posts, no matter what. And you are comfortable popping in once in a while, I would love it. Please let us know if there is anything we can do to help you in this difficult process called grief.

    Warm hugs,
    Kathleen
  • kayandok
    kayandok Member Posts: 1,202 Member

    (((LIsa))). I'm so sorry that my story has sharpened your grief
    I took each death on this Board very hard, very personally, and know the dispair you talk about. For something so universal and inevitable, death still seems to catch us all unprepared and brings back all of those 'meaning of life' questions, and grief that was getting manageable feels fresh and sharp again. I'm so sorry that I now bring this reality here to the forefront again. I struggled with whether I should tell the final twists and turns of my journey. If it is too painful or frightening, just tell me, and I can keep the details to myself. I have a wonderful support system with my family and friends. I would sure understand; just let me know.

    For me, Bonnie's almost-daily posts on CaringBridge allowed me to see how it might be at the end. As much as it hurt, Bonnie set the bar high on how to pass from this world to the next with incredible grace and until her last breath, she never stopped being the generous loving woman and the relentless FIGHTER we all knew her to be.
    With Linda Dorian, posting from the hospital, she completely opened up with her fears and worries about Meghan, and her dismay at her swollen legs and belly, and tooth-pick arms. Her vulnerability in showing the human side of dying taught me that this was okay, too. Better to be genuine.
    And I guess Nancy's final weeks hurt me the most, for we both had papillary serous cancer, were diagnosed the same month, 1st recurred the same month, and had our CA125 hit the stratosphere at the same time (and never went back down). Because of that, we had a special bond. It seemed we were on the same path, but I never thought she'd get to the end before me. I can't even talk about how sad and painful Nancy's death was for me, and won't go there now. But Nancy's final weeks probably are shaping my own self-care plan more than anyone's. In Hospice care, the materials all say that you don't have to eat if you don't feel like it, and caregivers are told they needn't force fluids. And you can't even imagine how much you DON'T want to eat when your digestive system in full of cancer; it makes you so uncomfortable. But I am drinking 4 cans daily of a 'medical food' so that I know I have at least 1000 calories and all the protein and vitamins/minerals to support life. Then I take a pain killer a half-hour before mealtimes, so that I am comfortable and so that I can easily eat at least something. And if it's something YUMMY, sometimes I can eat it all.

    I'm way off track here. I really just wanted to give you a hug ((((Lisa)))) and find out if anyone else here would really like to see what hospice is like and if I should post details.

    Linda, you have my vote
    for sharing whatever you are comfortable sharing in this journey. I'm sure it would be therapeutic for you, not to mention how much we can gain too. I have followed many of my friends journeys (the one's that have been open to share) at the end, and although it was sad and I wept at times, it was not only cleansing for me, but felt like a course on dying 101. THat sounds a bit weird, but it really gave me the courage to face the end with dignity and not be afraid to die the same way I have always lived. I learned that you die the same way you live, and that is natural and that is ok.

    Do you have a caring bridge account BTW? I do, but haven't used it very much lately. I'm thinking,I will probably use that primarily,as people who really want to know what is going on will sign up.

    Hugs,
    kathleen

    PS I will never forget my friend, Jools, who lived in Australia. She had a slow growing cancer and at the end, she had a complete bowel blockage, she could not eat or drink. She hooked up to TPN in the hospital, checked out when she was strong and then back into the hospital for TPN. She tried to get it at home, but it never got appoved. A few days before she died, she checked herself out of the hospital,took her two young boys to get haircuts and then took them to buy new bikes. They had a wonderful day. I think she died a few days later. Amazing woman, and really did die living and doing exactly what always did, and that was take care of her little boys.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    kayandok said:

    Hi Lisa,
    thanks for sharing your thoughts. I have been wondering about how you were, and was about to send you a PM. So I am happy to read your thougths tonight.

    I have never lost a parent, but have great compassion for you in the compliated issues that all land on your heart and shoulders, you can never be prepared to face.

    I love reading your posts, no matter what. And you are comfortable popping in once in a while, I would love it. Please let us know if there is anything we can do to help you in this difficult process called grief.

    Warm hugs,
    Kathleen

    Lisa
    I am new here on this board. I have uterine cancer - upsc like Linda P - which acts like ovarian.

    Like you, I don't know what to say either. I think it is good that you feel so connected. Funny how this "virtual" family is a real family. I have met 2 of the women that post on the CSN boards. We are sisters traveling the same journey. YOu are family and obviously connected and cared about by those here.

    I, too, am so sad about LInda's news. She has added so much to my life and helped educate and support us.

    Re: your loss and your mother. No one can dictate what is right where grief is concerned. At my mother's wake, the priest said to me, "all mother's die too young!". Wow, how true that is. I wish you peace. I know your mother is with you and I still talk to mine (she died 20 years ago! but still feels close). I also loved that poem which we put on my dad's memorial cards 12 years ago. Take all the time you need to grieve.

    I wish only good things for you and your family. Enjoy that pup - nurturing a new life will be fun. Mary Ann
  • srwruns
    srwruns Member Posts: 343
    Please post whenever you
    Please post whenever you feel up to it. I tend to "lurk" more than post as I am in remission (hopefully to stay that way). It cuts deeply when someone has moved off the path to wellness. I know I feel deeply for the person and, yes, guiltily for myself ala "will I be next?". I've often thought about you and wondered how things were going for you.
  • srwruns
    srwruns Member Posts: 343
    Please post whenever you
    Oops double post
  • Cindy Bear
    Cindy Bear Member Posts: 569
    Dear Lisa
    I am always so glad to see that you've posted.. I often wonder and worry about you.. and yes life is different and probably never will be the same. but it goes on.. It's always something isn't it. I too feel sometimes that I don't belong here, need to move on, my mom has been gone almost 2 1/2 yrs.. but I can't. I have become attached to the ladies on the uterine and ovarian boards.. I have this compulsion to check on them.. I have come to care about them deeply.. and I figure that's okay too.. You and I, can offer support, encouragement, a kind word can mean so much. We can also educate all the women in our lives about this horrible disease. Please take care of yourself and let us know how you are doing occasionally...
    Hugs,
    Cindy
  • kellyh33
    kellyh33 Member Posts: 287
    Me too
    Hi Lisa,
    I know exactly how you feel. A few days after my mom passed away i deleted the group from my desktop. I know it sounds selfish but i was angry that others that have this disease were still carrying on and mom was not. I realize it sounds terrible but when i would read about them i would think why can't mom still be here too. Then I didn't want to read about it because i felt so very sad that others are still fighting this battle. I pray they all make it.
    I don't feel I have a right to post on the board anymore either because I don't have anything uplifting to offer, no words of encouragement. How can I be somebody else's cheer leader when I couldn't save my own mom?
    It is like another loss, isn't it? I used to be on this board everyday for 14 months and usually more then once a day searching for anything that could offer even a glimmer of hope. Praying there would be a new treatment available that we hadn't heard of. I remember being so optomistic when mom started the clinical trial that it would be the answer. I thought to myself that i too would be able to offer good news like Carlene was. Even though the trial didn't save mom i still think she was a hero and so brave for trying.
    Then when she started the Doxil she seemed so much stronger after the first treatment i believed she would make it. Little did i know 4 short months later she would be gone.

    I don't feel anyone other than my siblings understand the tremendous loss i feel everyday. I try not to talk about it because i don't want to bring other people down.

    I include all of you in my prayers. Thanks for letting me rant.
    Kelly
  • kellyh33
    kellyh33 Member Posts: 287

    (((LIsa))). I'm so sorry that my story has sharpened your grief
    I took each death on this Board very hard, very personally, and know the dispair you talk about. For something so universal and inevitable, death still seems to catch us all unprepared and brings back all of those 'meaning of life' questions, and grief that was getting manageable feels fresh and sharp again. I'm so sorry that I now bring this reality here to the forefront again. I struggled with whether I should tell the final twists and turns of my journey. If it is too painful or frightening, just tell me, and I can keep the details to myself. I have a wonderful support system with my family and friends. I would sure understand; just let me know.

    For me, Bonnie's almost-daily posts on CaringBridge allowed me to see how it might be at the end. As much as it hurt, Bonnie set the bar high on how to pass from this world to the next with incredible grace and until her last breath, she never stopped being the generous loving woman and the relentless FIGHTER we all knew her to be.
    With Linda Dorian, posting from the hospital, she completely opened up with her fears and worries about Meghan, and her dismay at her swollen legs and belly, and tooth-pick arms. Her vulnerability in showing the human side of dying taught me that this was okay, too. Better to be genuine.
    And I guess Nancy's final weeks hurt me the most, for we both had papillary serous cancer, were diagnosed the same month, 1st recurred the same month, and had our CA125 hit the stratosphere at the same time (and never went back down). Because of that, we had a special bond. It seemed we were on the same path, but I never thought she'd get to the end before me. I can't even talk about how sad and painful Nancy's death was for me, and won't go there now. But Nancy's final weeks probably are shaping my own self-care plan more than anyone's. In Hospice care, the materials all say that you don't have to eat if you don't feel like it, and caregivers are told they needn't force fluids. And you can't even imagine how much you DON'T want to eat when your digestive system in full of cancer; it makes you so uncomfortable. But I am drinking 4 cans daily of a 'medical food' so that I know I have at least 1000 calories and all the protein and vitamins/minerals to support life. Then I take a pain killer a half-hour before mealtimes, so that I am comfortable and so that I can easily eat at least something. And if it's something YUMMY, sometimes I can eat it all.

    I'm way off track here. I really just wanted to give you a hug ((((Lisa)))) and find out if anyone else here would really like to see what hospice is like and if I should post details.

    Hello Linda
    I don't really know what to say other then you are very strong and so very brave.
    You are right nobody will force you to eat or drink if you don't want too. The last week or so Mom took small sips of water, had ice chips and ate quite a few banana popsicles.
    I can honestly tell you my mom had no pain from the cancer. Any discomfort she had was from acid reflux which she had had for over 20 years. Thankfully, the pallative care team was able to give her something in her leg that eased the acid reflux. Other than that mom was very comfortable.
    Thank you for your support as mom was completing her journey. It really did mean a lot to feel like others were there guiding me as i watched my mom fade away. I can still feel her with me sometimes and it brings me great comfort.
    Like you i got way off track. Keeping you in my thoughts and prayers.
    Kelly
  • Lisa13Q
    Lisa13Q Member Posts: 677
    kellyh33 said:

    Me too
    Hi Lisa,
    I know exactly how you feel. A few days after my mom passed away i deleted the group from my desktop. I know it sounds selfish but i was angry that others that have this disease were still carrying on and mom was not. I realize it sounds terrible but when i would read about them i would think why can't mom still be here too. Then I didn't want to read about it because i felt so very sad that others are still fighting this battle. I pray they all make it.
    I don't feel I have a right to post on the board anymore either because I don't have anything uplifting to offer, no words of encouragement. How can I be somebody else's cheer leader when I couldn't save my own mom?
    It is like another loss, isn't it? I used to be on this board everyday for 14 months and usually more then once a day searching for anything that could offer even a glimmer of hope. Praying there would be a new treatment available that we hadn't heard of. I remember being so optomistic when mom started the clinical trial that it would be the answer. I thought to myself that i too would be able to offer good news like Carlene was. Even though the trial didn't save mom i still think she was a hero and so brave for trying.
    Then when she started the Doxil she seemed so much stronger after the first treatment i believed she would make it. Little did i know 4 short months later she would be gone.

    I don't feel anyone other than my siblings understand the tremendous loss i feel everyday. I try not to talk about it because i don't want to bring other people down.

    I include all of you in my prayers. Thanks for letting me rant.
    Kelly

    Little notes to you all
    Thank you all so much...

    First to Linda P...Please do NOT stop sharing. EVER...it is crucial that we do...just because it's hard to read, or saddens my heart, or anyone else's doesn't matter. It is part of this disease and this journey and the greatness of this board.......there is hope in every post...I just had to respond because when I read it, my heart broke a little more......but you are amazing and strong and we all need to share and hear from each other.....I remember writing my "journal" the last few days of my mother's life...and I thought you all will think I'm crazy..but I wouldn't have made it through....where else could I go to share my frustration with having to put away the 24 bottles of spaghetti sauce and 96 eggs that my sister had purchased for her family of 4...

    Kelly...I understand more than you would know...the "loss of the board"..yes that feeling we don't belong here anymore...that hope that the new chemo has worked and then the incredible "let down"...when we realize, "ah, that was the last hoorah"...cancer is cruel...and just as everyone has told me I am welcome here....so are you.....and yes I remember your mother and mine were in the same trial....your mother was #18, mine #16......what a small world...

    Kayandok...wll, you're just the best.....and you can NEVER let this beast get you...

    Carlene,,,,we know it will never get you....

    Thank you all so much for being so supportive....I have read each of your posts through at least 6 times now....they are all so wonderful....you are all so wonderful and I will be back!!! Thank you so much
  • Susan53
    Susan53 Member Posts: 178

    (((LIsa))). I'm so sorry that my story has sharpened your grief
    I took each death on this Board very hard, very personally, and know the dispair you talk about. For something so universal and inevitable, death still seems to catch us all unprepared and brings back all of those 'meaning of life' questions, and grief that was getting manageable feels fresh and sharp again. I'm so sorry that I now bring this reality here to the forefront again. I struggled with whether I should tell the final twists and turns of my journey. If it is too painful or frightening, just tell me, and I can keep the details to myself. I have a wonderful support system with my family and friends. I would sure understand; just let me know.

    For me, Bonnie's almost-daily posts on CaringBridge allowed me to see how it might be at the end. As much as it hurt, Bonnie set the bar high on how to pass from this world to the next with incredible grace and until her last breath, she never stopped being the generous loving woman and the relentless FIGHTER we all knew her to be.
    With Linda Dorian, posting from the hospital, she completely opened up with her fears and worries about Meghan, and her dismay at her swollen legs and belly, and tooth-pick arms. Her vulnerability in showing the human side of dying taught me that this was okay, too. Better to be genuine.
    And I guess Nancy's final weeks hurt me the most, for we both had papillary serous cancer, were diagnosed the same month, 1st recurred the same month, and had our CA125 hit the stratosphere at the same time (and never went back down). Because of that, we had a special bond. It seemed we were on the same path, but I never thought she'd get to the end before me. I can't even talk about how sad and painful Nancy's death was for me, and won't go there now. But Nancy's final weeks probably are shaping my own self-care plan more than anyone's. In Hospice care, the materials all say that you don't have to eat if you don't feel like it, and caregivers are told they needn't force fluids. And you can't even imagine how much you DON'T want to eat when your digestive system in full of cancer; it makes you so uncomfortable. But I am drinking 4 cans daily of a 'medical food' so that I know I have at least 1000 calories and all the protein and vitamins/minerals to support life. Then I take a pain killer a half-hour before mealtimes, so that I am comfortable and so that I can easily eat at least something. And if it's something YUMMY, sometimes I can eat it all.

    I'm way off track here. I really just wanted to give you a hug ((((Lisa)))) and find out if anyone else here would really like to see what hospice is like and if I should post details.

    Please don't stop
    Linda please keep posting as long as you feel up to it. I so admire you and we all need lessons on what the end can be like. I think it is important that you are still controling how things are going to happen with you. I throughly respect your choice of quality and not quanity. I would only hope when it comes time for me to make the tough decisions that you are making, that I can do it with all the dignity that you have. Thank you for sharing with your teal sisters. Sharon
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    Lisa13Q said:

    Little notes to you all
    Thank you all so much...

    First to Linda P...Please do NOT stop sharing. EVER...it is crucial that we do...just because it's hard to read, or saddens my heart, or anyone else's doesn't matter. It is part of this disease and this journey and the greatness of this board.......there is hope in every post...I just had to respond because when I read it, my heart broke a little more......but you are amazing and strong and we all need to share and hear from each other.....I remember writing my "journal" the last few days of my mother's life...and I thought you all will think I'm crazy..but I wouldn't have made it through....where else could I go to share my frustration with having to put away the 24 bottles of spaghetti sauce and 96 eggs that my sister had purchased for her family of 4...

    Kelly...I understand more than you would know...the "loss of the board"..yes that feeling we don't belong here anymore...that hope that the new chemo has worked and then the incredible "let down"...when we realize, "ah, that was the last hoorah"...cancer is cruel...and just as everyone has told me I am welcome here....so are you.....and yes I remember your mother and mine were in the same trial....your mother was #18, mine #16......what a small world...

    Kayandok...wll, you're just the best.....and you can NEVER let this beast get you...

    Carlene,,,,we know it will never get you....

    Thank you all so much for being so supportive....I have read each of your posts through at least 6 times now....they are all so wonderful....you are all so wonderful and I will be back!!! Thank you so much

    Lisa....I wish I had your
    Lisa....I wish I had your confidence in me. I am so not immune. I never feel "safe." When my Rangers lost the world series (for the second time in as many years), my first thought was, "Will I live to see them play for the championship again?"

    Don't you dare go away forever, Lisa. You cannot just run off and leave us wondering if you reached a better place someday (and you will, trust me). Death and I will never be friends but we certainly aren't strangers. I have buried both my parents, my only sibling, two husbands and a grandchild. On the day after each of them died, I got up and was absolutely amazed to find that the world had not stopped turning. Everything went on around me, just as it had before, and eventually I had to go on too. Because the world won't stop and let us off.

    Linda Dorian's death, and Nancy's, were very hard because they were so "real" to me. I talked to them both on the phone many times, and I met Nancy several times in person. I knew when they both turned their care over to Hospice, and both of them swore me to secrecy because they did not want to upset anyone on the board. I encouraged Linda not to follow their example. It is what it is, ladies. This disease spares few and claims many. Do not let it drive you into hiding - ever.

    If it comes back for me, you will all have to listen to me whine and scream and cry, everyday, until I don't have the strength to type. And don't foget, I have phone numbers for some of you and I WILL use them!

    I am totally pissed at God right now. Not speaking to Him - at all. (I realize God probably doesn't care, but that's His problem, not mine.)

    Carlene
  • carolyn45
    carolyn45 Member Posts: 100

    (((LIsa))). I'm so sorry that my story has sharpened your grief
    I took each death on this Board very hard, very personally, and know the dispair you talk about. For something so universal and inevitable, death still seems to catch us all unprepared and brings back all of those 'meaning of life' questions, and grief that was getting manageable feels fresh and sharp again. I'm so sorry that I now bring this reality here to the forefront again. I struggled with whether I should tell the final twists and turns of my journey. If it is too painful or frightening, just tell me, and I can keep the details to myself. I have a wonderful support system with my family and friends. I would sure understand; just let me know.

    For me, Bonnie's almost-daily posts on CaringBridge allowed me to see how it might be at the end. As much as it hurt, Bonnie set the bar high on how to pass from this world to the next with incredible grace and until her last breath, she never stopped being the generous loving woman and the relentless FIGHTER we all knew her to be.
    With Linda Dorian, posting from the hospital, she completely opened up with her fears and worries about Meghan, and her dismay at her swollen legs and belly, and tooth-pick arms. Her vulnerability in showing the human side of dying taught me that this was okay, too. Better to be genuine.
    And I guess Nancy's final weeks hurt me the most, for we both had papillary serous cancer, were diagnosed the same month, 1st recurred the same month, and had our CA125 hit the stratosphere at the same time (and never went back down). Because of that, we had a special bond. It seemed we were on the same path, but I never thought she'd get to the end before me. I can't even talk about how sad and painful Nancy's death was for me, and won't go there now. But Nancy's final weeks probably are shaping my own self-care plan more than anyone's. In Hospice care, the materials all say that you don't have to eat if you don't feel like it, and caregivers are told they needn't force fluids. And you can't even imagine how much you DON'T want to eat when your digestive system in full of cancer; it makes you so uncomfortable. But I am drinking 4 cans daily of a 'medical food' so that I know I have at least 1000 calories and all the protein and vitamins/minerals to support life. Then I take a pain killer a half-hour before mealtimes, so that I am comfortable and so that I can easily eat at least something. And if it's something YUMMY, sometimes I can eat it all.

    I'm way off track here. I really just wanted to give you a hug ((((Lisa)))) and find out if anyone else here would really like to see what hospice is like and if I should post details.

    Please, stay with us.
    Linda, every post of yours is extra special now. You are teaching all of us in ways you can never fully comprehend. Also, knowing what is going on for you helps us to pray more often and more specifically. To me prayer can be formal or just deep, heartfelt wishes for you to feel surrounded by love, comfort, and grace in this transition that is unfolding.
  • Mwee
    Mwee Member Posts: 1,338

    (((LIsa))). I'm so sorry that my story has sharpened your grief
    I took each death on this Board very hard, very personally, and know the dispair you talk about. For something so universal and inevitable, death still seems to catch us all unprepared and brings back all of those 'meaning of life' questions, and grief that was getting manageable feels fresh and sharp again. I'm so sorry that I now bring this reality here to the forefront again. I struggled with whether I should tell the final twists and turns of my journey. If it is too painful or frightening, just tell me, and I can keep the details to myself. I have a wonderful support system with my family and friends. I would sure understand; just let me know.

    For me, Bonnie's almost-daily posts on CaringBridge allowed me to see how it might be at the end. As much as it hurt, Bonnie set the bar high on how to pass from this world to the next with incredible grace and until her last breath, she never stopped being the generous loving woman and the relentless FIGHTER we all knew her to be.
    With Linda Dorian, posting from the hospital, she completely opened up with her fears and worries about Meghan, and her dismay at her swollen legs and belly, and tooth-pick arms. Her vulnerability in showing the human side of dying taught me that this was okay, too. Better to be genuine.
    And I guess Nancy's final weeks hurt me the most, for we both had papillary serous cancer, were diagnosed the same month, 1st recurred the same month, and had our CA125 hit the stratosphere at the same time (and never went back down). Because of that, we had a special bond. It seemed we were on the same path, but I never thought she'd get to the end before me. I can't even talk about how sad and painful Nancy's death was for me, and won't go there now. But Nancy's final weeks probably are shaping my own self-care plan more than anyone's. In Hospice care, the materials all say that you don't have to eat if you don't feel like it, and caregivers are told they needn't force fluids. And you can't even imagine how much you DON'T want to eat when your digestive system in full of cancer; it makes you so uncomfortable. But I am drinking 4 cans daily of a 'medical food' so that I know I have at least 1000 calories and all the protein and vitamins/minerals to support life. Then I take a pain killer a half-hour before mealtimes, so that I am comfortable and so that I can easily eat at least something. And if it's something YUMMY, sometimes I can eat it all.

    I'm way off track here. I really just wanted to give you a hug ((((Lisa)))) and find out if anyone else here would really like to see what hospice is like and if I should post details.

    Dear Linda
    When I first came to this board, I was over three years into this disease and recurring. The first person who greeted me was Bonnie. Bonnie, Saundra, and Dorian (I can't talk about Nancy yet either) taught me about strenght, grace and courage and totally impacted the way I live for today. I, for one, hope you continue to post as much and as often as you feel up to. "Better to be genuine", yes, I think so too. I hope you find lots of things are yummy. I'm so proud of you, dear girl.
    ((((((HUGS)))))) Maria