De Novo Stage IV
Comments
-
Hello all,
wishing everyone a very Happy Thanksgiving! I’m so thankful for your all the kindness, wisdom and encouragement.
May your day be filled with warmth, love, and moments of gratitude🧡
2 -
@snow-drop Happy Thanksgiving to you as well. Beautiful words.
1 -
Hi, everyone. It’s been a while since this thread has been active.
I started this thread in July of 2020. Who knew so many of us would come here and comment on it. 93 pages’ worth.
Anyway, I am here today to say I’ve signed up for hospice. It’s not because I have weeks or months to live but because I’ve been off treatment for three months, and I don’t feel the need to see doctors any longer. I will have access to them 24/7 when I need them, and I will have a nurse visiting me weekly to take vitals and see how I’m doing. It was a good meeting. I did not want to wait until it was too late for comfort care.
I hope you’re all doing well. Sending hugs.
4 -
Many many hugs back, dear kbl. Thank you for creating this thread - it gave a lot of hope, strength and knowledge to me and my wife in our very difficult journey. Thank you. Saulius
0 -
@kbl Thank you so much for this thread and the hope it gave me. I think a lot about the last stage of life, and how to make it meaningful. I hope your own journey finds answers to that question.
0 -
@kbl, this thread has given me so much valuable information and I cannot thank you enough. In your pockets with support.
0 -
@denny123 I had one visit with palliative when I was in North Carolina, and it was a very good experience. I didn’t feel I needed anything at the time. I am learning that things can change very quickly when you come off treatment, and I’ve seen firsthand those who waited too long and didn’t get the support needed from hospice because they died too quickly. I have been off treatment for three months and do feel it was the right decision for me. I won’t be going back on treatment. Going on hospice early gives me and the hospice team a chance to form a really good relationship. I honestly don’t think I am going to die anytime soon, but I and my husband will be prepared. He was with me today when my nurse came. I feel they are there for him as much as me, and I’m glad he won’t feel he has to do it all himself. They have up to five days of respite care if I get to the point I can’t be alone. Even though he says he would never do that, he knows it’s available, and I’ve told him I absolutely support him if he needed a break. I want to do these things now while I’m still of sound mind. I’ve told him if I fight things when I get worse, I give him permission now.
I know it’s hard when each of us make the decision to go off treatment. We hate to see anyone die, but I’m so grateful to have had the time I never expected to have. Not a lot of people get to have cancer with no treatment for six years, end up with it in their stomach, never be NED, and still be alive another over five years past that.
The other thing that’s hard is I’ve never looked sick. I’m grateful for that as well, but it really does make it hard for people to understand. My outside looks as normal as anyone else, but my insides are a mess.
I appreciate you so much and your wisdom over the years.0 -
@tougholdcrow and @malleemiss251 Thank you. I hope I can answer or help any of you with questions now or in the future.
0 -
Hi kbl. I don't write often but wanted to thank you for the years of kindness, gentleness, wisdom you've brought to us on these boards. Even at this moment you continue to give us insight on a peaceful and thoughtful transition. I hope you have much more time that is comfortable to spend with your husband and loved ones. No need to answer, just know that many here are keeping you in their hearts.
2 -
@smallmoments Thank you so much. I have been so grateful for everyone on these boards as well. I’m so thankful for the support and help when I’ve needed it.
1 -
Dear @kbl , thank you so much for sharing your journey with us.
Your wisdom, your strength, your ability to face the most difficult circumstances with grace and dignity, are helping all of us who are navigating the same path.
You remain in my thoughts1 -
@lacombattante Thank you so much for your kind words. In feeling like I’m helping others along this path, I’m helping myself to navigate as well. 💕
2 -
@kbl Thank you for updating us, I actually got on here specifically to check in on how you were doing! I’m so appreciative you’ve set up this thread it’s helped me and many others so so much. It makes sense to set up hospice while you’re feeling good so you can get the care you need the second you need it. Sending so much love your way ♥️
3 -
@kbl I also want to thank you for starting this thread. It is a place full of information, support, encouragement and inspiration for me. It continues to provide me with hope when I feel surrounded by darkness. Thank you for sharing your story with us. I am keeping you and your loved ones in my thoughts.
1 -
@jobbibo That is awesome that you’re doing well and your scan is encouraging. I will be thinking of you as you get your brain scan. Please keep me posted.
@harrow Thank you so much. I do hope my updates let everyone feel we need to do what is right for us. I so admire everyone for their strength to get through the hard days and enjoy the good days.
2 -
Brain scan showed all clear so good on all 3 of the scans! Just continuing on with the trial :)
2 -
Merry Christmas to all who celebrate !
@kbl, I've read your update and support your decision. I am so happy to read you are getting the quality of life you were looking for and have great support in Hospice. You have guided so many in these discussions and although I am not denovo and not ILC I have learned a tremendous amount from your posts .Sending you and all you love holiday greetings! Happy holiday to all .
0 -
@aprilgirl1 Merry Christmas to you as well. Thank you for your kind words. I think my biggest thing in this whole shit show that is cancer has been wanting to help others. I appreciate you for saying that. Thank you so much. I hope you have a wonderful day. I’m making a rotisserie turkey breast in my air fryer. I did one for Thanksgiving, and it was the best turkey I’ve ever had.
0 -
Happy Holidays everyone!! Has been hectic with lots of family and friend gatherings, ready to slow down a bit!
1
