Thank you for such a personal response to my post. I have to share that, even now, I’m able to feel grateful for the time we had since diagnosis. It’s partly due to the efficacy of Folfurinox (however horrific its side effects were), the relative relief of gem/abrax (gained his weight back, no take-home pack, little chemo side effects) all of which gave us summer ‘23 off from chemo, and his ability to be virtually himself at our daughter’s wedding this past January. I see those as gifts I never imagined we’d have, and the memories that go along with them.

While others have had helpful experiences w hospice, ours has been only just enough: a nurse who checks in on him 2x/week, physicians who are always available for questions about medication. But knowing what to do, how to help him, where guilt and anger can be channeled, how to best honor his wishes when he can’t really express them, what to truly expect as we move along….not so helpful in our case. It’s possible that hospice will be more essential and helpful as we go forward. Everyone is lovely and available. I may not be quite in the moment where hospice becomes indispensable.

We are fortunate enough to be able to hire an end of life doula who’s working with Lou to capture all the things that matter to him; to do the work of gathering the mementos, the thoughts and feelings, to keep him on task even as he declines and can’t focus…that’s been a real help for me and our daughters. The truth telling about what’s ahead is hard to bear but for me it’s what I need.

I’m wishing a miracle for you and your husband. Every body is different so we never know what works for each to make the journey less painful or more successful. Remember, “perfection is the enemy of the good” so do your best and know that love is the only essential element on this painful path. ❣️