I’m on hospice - anyone else?
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Had my hospice doc today. I love him. He’s so compassionate. He comes usually once a month right now. He has upped the amount of meds I’m taking instead of adding different ones right now. Hopefully that helps a little with eating, but we shall see. He did do a little test and said I may have some ascites. I could go on a diuretic, but we’re going to hold off for now because we’re not 100% sure.
I bought a compact blender and am going to make smoothies. Had one today, and it’s definitely easier to have liquid.
He did tell me at the end, there is a way to stop my stomach from working and I shouldn’t feel this anymore. That made me happy. Who wants to feel this at the end? He said after that, I would survive about seven days. I’m not there yet.
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@kbl, I am so grateful to you for sharing your story. It's a very personal decision to stop treatment and it's a very personal decision to go "public" with your experience. I started on this board because I thought I was getting close to the end of my treatment options. Not there yet, but it's so helpful to hear what you're going through. I hope I can be as clear-eyed as you when my time comes.
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KBL,
I am sorry that you’re going through this. Eating has also become my greatest challenge, and since yesterday I’ve been throwing up even liquids. Waiting for some popsicles to be delivered but the hospice nurse came by so we discussed some strategies for hydration and light eating. Nausea is the worst feeling in the world for me. Hope the days ahead are easier for you.
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@onlywhenitrains I’m so appreciative of your words. I am definitely an open book, and I don’t mind answering any questions. Thank you so much. I’m so glad you are not at a place to have to make a decision. I took three months before I tried the two Enhertu infusions to really have my tears and acceptance. My doctor tells me he can tell I’m at peace. That really felt good he could realize it too.
@exbrnxgrl My first time finding out it was in my stomach, I had so much nausea. This time I’m not sure if it’s the reglan or steroid that is making it so I don’t.
I’m so sorry you’re throwing up. I’m not looking forward to that. I hope it gets better for you.
Just for anyone reading, my sister has taken on the task of letting people know when I’m gone. I’m not sure I said that. I am at a loss when someone disappears and I don’t know what happens.
Hugs
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@kbl. I'm so glad your sister will let us know. Thanks for taking care of us.
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@kbl-thanks to you and your sister. It is a relief to get closure-to know that someone has died instead of left wondering. I pray you will continue to be at peace as you wind down this earthly life.
Peace to you, as well, Caryn.
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@onlywhenitrains and @chicagoan Thank you. 💕
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@kbl and @exbrnxgrl , thanks so much for telling us about your experiences with hospice care. I’m super curious since most of us will be there eventually. One question, do you continue to see your oncologist or has care been fully transferred to the hospice doctor?
Here’s hoping you get the care and comfort you need.0 -
I haven’t had direct care from my mo but she does monitor my condition, via hospice, and we talk about once a month.
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Hi, everyone!
Just a quick update. I will be getting my hospital bed this coming Monday and starting some palliative sedation. My stomach is huge, and it makes it hard to breathe. I’m very weak and don’t walk a lot so I don’t fall.
@exbrnxgrl How are you doing?
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@chicagoan Thank you! 💕
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@kbl Thank you for all your sharing on this forum, and especially on this thread. Your journey has taught and enriched me so much. It's a sacred experience that you share with us, for which I am infinitely grateful.
I hope that we can quickly relieve you and make these next| days comfortable. A new path opens before you. My warm and emotional thoughts are with you.0 -
@soldanella Thank you so much. I was hoping to help anyone fearful of the process.
I so appreciate your kind words.2 -
Kbl, thank you for continuing to share how you are doing. I've learned so much from you on this message board and have always appreciated your posts and perspective. I have confidence that the palliative sedation and hospice will make you comfortable. Thank you for the care and comfort you gave to me and others when we needed support . Sending love and prayers to you and your family.
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Hi All-
This is Kaila, Caryn aka exbrnxgrl, younger daughter. I wanted to let you all know that she passed away earlier today. She got to say goodbye to all of her grandkids Sunday and then was unconscious by Monday morning. She passed away holding my sister and I’s hands. Thank you for your support for her over the years. She loved her BCO friends very much.
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@aprilgirl1 Thank you for your kind words. My goal has always been to help and not scare.
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@kailag I want to thank you so much for letting us know. I now how much harder it is on the family, and to take the time and let our BCO family know helps us so much with closure. May @exbrnxgrl rest in peace, and I’m so glad you were able to be with her. Hugs to you all.
Kris
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@kailag - Kaila, we’re so sorry for your loss. Your mom, Caryn, was a beloved member of this community, and she touched so many lives. We're holding you and your family in our hearts.
The Mods
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Since Kaila posted on this thread (which Caryn told me to follow for updates), I will jump in to say how very, very sorry I am to read this news. Caryn & I were friends from several different threads, and met up in person for a fabulous dinner & night of laughter when a group of us from the Lets Post Our Daily Exercise thread went to San Francisco a number years ago. We were both teachers, so found we 'clicked" and had had an ongoing conversation through Private Messages throughout the years & until just a few weeks ago when she sent me a picture of Pumpkin (her beloved dog) enjoying life with the grandkids. Caryn was a smart, brave person & I feel very lucky to have known her! Rest in Power.💓
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@kailag Thank you for letting us know about your mother's passing. It's good to know that you and your sister were with her as she died. She was a wonderful resource for all of us here. May she rest in peace.
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@kailag Thank you so much for letting us know. As others have mentioned, your Mom was a beloved member of our community. She was thoughtful, witty, honest, and well respected. She will be missed. I’m grateful you and your sister were there with her as she crossed. My heart and prayers are with you both and your entire family. Fly high, Caryn.
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Dear Kris:
Your desire to comfort and educate all of us during this final phase of your life is a testament to your character and kindness. I will always remember the contributions you have made here and your courage as you face what will be inevitable for each of us.
I wish you a peaceful and pain-free transition.
Eleanora
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@kailag , I’m jumping in here to say thank you for letting us know and how sorry I am for you and your family. Your mother always took the time to answer frantic posts from newbies worried about abnormal mammograms and waiting for imaging results. She was a voice of calm and reason for so many worried women. I will miss her but remember her for going out of her way to reassure others. May she be at peace.
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Kaila, your mother was a gem. I spent a lot of years here and your mother profoundly and positively impacted more people than anyone I can think of. The effort she put into helping newbies, whether they were not diagnosed or just diagnosed or newly diagnosed with a recurrence or Stage IV, was second to none. She will be missed here and she will be missed by so many of us.
My condolences to you, your sister and all who loved Caryn. May her memory be a blessing.
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@kbl Thank you for always being a positive source for all of us here. I have always admired your grace and attitude as you approached each hurdle along the way. May you get the relief you deserve with palliative sedation and a pain free transition. Sending love and support to you and your family❤️
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@kailag I am so sorry to hear of your mother's passing. She was a major source of strength and sense on these boards, and will be missed more than any of us can say.
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