Anyone chosen palliative care? What are the last months/weeks like?

Posted by rfherald @rfherald, Sep 28, 2023

I have duodenal cancer and have read about the difficult after effects of Whipple. I am 77, enjoyed life, and chose what appears to be a more pleasant conclusion. I have had a Gastroduodenostomy and will follow with chemo, but what are the last weeks/months really like?

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Profile picture for happyjack @happyjack

Thank you for kind words. rfharold and other have expressed wanting information on the months we have left. I am just trying to provide some information on what I am going through. Another wanted to know how long and wanted to do his taxes. I need to let him know I did mine and check on how he is doing. As our body weakens, we are at greater risk of other serious illnesses. Like my going septic from an infection. I would guess that different states and even different companies have differences in Hospice and Palliative care. For me Palliative care permits me to have more testing than Hospice. But Palliative care does not have 24 7 coverage for care. Had I been on Hospice care a nurse would have come out on that Sunday sometime and they could bring out oral meds. I would not have been sent to a hospital for a CT scan or received IV meds. In that way Palliative care was and is best for what I want now. When I get evidence that the cancer is back I will switch to Hospice care as they will offer training for family members and will also have counselling for everyone who needs it. My sons may want to talk with them and my mom is having a really tough time with this so she really needs some help. These services are not available to me or my family as long as I am on palliative care. This is just the way things are in my state with the company I have selected for Palliative and Hospice care. Hospice has a lot more medical equipment such as beds that are easier to get out of. I have had a bad taste in my mouth for some time. It may be the infection and the meds did not rid my body of it completely. Or it just could be that the cancer is back somewhere. I am still able to drive and shower. Do my own laundry. I can cook and do dishes. I am mostly pain free. And even with the digestive issues I will take as much of what I have now as I can get. I am sleeping a lot more and not very strong. I had a good day today and cleaned the snow off my car and van and aired up the van tires. I just need to see if I wake up tomorrow and if I do I need to see what I can do with it.

Nothing but good things wished to everyone.

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@happyjack Sir, you mentioned the "company that you selected for Hospice and Palliative care". Does that company have a hospice facility you could go to if you desired?

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@rfherald Thank you so much for sharing this. My husband was diagnosed with stage 4 PC
in July 2024. He has never had any treatment and although it had already spread to his lungs and stomach and several lymph nodes, he was doing fairly well. Things started to change about 5 weeks ago and they have now referred us to a Palliative Care Team. He has stopped eating and has lost quite a bit of weight. Sleeping about 16 hours a day and his feet and hands are always cold so even when he is sitting watching TV, I wrap blankets around him. We have been together since we were 17 and Seniors in High School and will be married 52 years in July.
Hardest thing in the world to watch your Best Friend going through this and feeling so helpless.

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