What I learned today about palliative care

[MupstateNY]

My wonderful primary called me today (her initiative). When we were done getting on the same page about some orders, I asked how palliative care (PC) and Hospice work in our county. She explained what you guys have been trying to explain to me. I don't know what happens to me, sometimes I just don't understand things well. But I've got it now. I can go ahead and start PC now if I want to, to get established for when I need something. I don't have to wait until I have 6 months left. She said there are PC providers locally and she thinks they do a good job. I wouldn't have to start morphine until it makes sense.

Since I'm having trouble getting the feeding tube set up, she said she would call them and see if they can make the order and get the prior auth.

My Relyvrio arrived today but I'm afraid of the taste. Also today was the end of my Radicava cycle and I want to see if I can regain some energy and strength with a couple days of Riluzole only.

 

[affected]

Sometimes I am in awe at how much you are doing in such a short time since diagnosis.
I don't usually comment on PC because it is so different here in Oz where you register asap. That is totally different to receiving services or being 'on hospice care'.
Start the relyvrio on the day you feel ready, you have it there now so you can make the choice.

 

[MupstateNY]

Thanks, affected. I'm tired! I feel like everything is up to me! Good idea, I will wait a bit with the relyvrio.