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

Thank you for this discussion. I"m hoping we are a long way from making these decisions, but you never know what changes are in our near future.

Right. Nor do we know what options are available. I want to be prepared.

I am 78 and just started this journey. Thanks for the information. Keep us posted🙏🏻

I just ran across this:
https://mylifechoice.org/2024/05/08/understanding-end-of-life-signs-recognizing-symptoms-6-months-before-death/#:~:text=What%20are%20the%20common%20symptoms,memory%20and%20other%20cognitive%20changes

I found those also and started reading them but have not finished yet. I did have an infection and sepsis weeks ago that resulted in a trip to the hospital. I am on palliative and if I had been on hospice the sepsis may have taken me. BP was 70/40. If I set up I went back over as no blood was going to my brain. My CA 19-9 numbers had reached 1300. But several weeks after IV and oral antibiotics, it was down to 55. My nurse was convinced that I had cancer again. But the CT scan that found the infection did not show any tumors. Seems it was the infection that caused the high CA 19-9 numbers. I have a follow up scan next week and will see what if anything it shows. Either in the way of infection or cancer.

My nurse seems to ask every time we speak about my appetite. I guess that is what I need to watch for. Once I stop wanting to eat it will for sure be time to switch to hospice.

I am still able to go shopping and can cook and do dishes. I have been cooking for family and doing dishes as much as I can. Figure I will help out as much as I can while I can before I will need help with most everything. I just want to die well if there is such a thing. I hope it is fast and happens before I need a lot of care from others. Not up to me though. My home state does not have death with dignity laws. I will just have to see when it is my time.

Take care and I wish you and everyone nothing but good things going forward with cancer.

First, palliative care does not mean end-of-life care. Palliative care is also used to treat patients while recovering from surgery and during chemo. My wife had Whipple surgery in mid-December 2023. Three months after surgery she started six months of chemo (chemo was delayed because she had a lot of post-surgery challenges). Through all this and continuing now, there has been a palliative care provider who meets online with my wife to go over her care regimen and address any symptoms that my wife has.

Second, palliative care is nearly always available at end-of-life. My wife's sister, an MS patient with cancer, reached the point that she declined nourishment. She was in the hospital and the palliative care team met with her, her two sisters, and me. My sister-in-law was asked what she wanted and she told them she wanted to go and had declined food. The team then asked us what we wanted and we said we want my sister-in-law's wishes honored. The team then said that she is now under palliative care. At that point the hospital's goal is no longer to heal the patient, it is to make the patient as comfortable as possible. They did so and two weeks later she passed away. She was the sweetest sister-in-law a guy could ever wish for. She loved her sisters and me without conditions. She always thought of others first.

Dear Happyjack..you have such a great attitude and I have appreciated your postings the last few months. This posting was so relevant (maybe) and helpful to me at this time. My routine blood draw showed CA19-9 just leaped to over 300, but the CT scan showed nothing. And my blood pressure at night is often 80/50 or lower. As I haven't been feeling well I figured, "this is it" and I'm the one who eschewed chemo after my 2 weeks on the formula with the pump. I did have the Whipple in May, 2023 and radiation for a small metastasis June, 2024. I just turned 85 so can't complain about whatever happens.
Courage to both of us and the rest of our support group, Carrie

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.