What do you wish you'd known sooner about handling a loved one's cancer?

Question

I was in this situation around 5 years ago with my dad.I wrote some notes of what I wish someone had told me. Specifically I'm meaning for diagnoses that are terminal or that might be terminal.What about you - what do you wish you'd known sooner, what would you tell your earlier self - the things you're glad about doing/not doing, or the things you regret doing/not doing/not knowing.

tikkun · Accepted Answer

The 4 most useful books to me were these 4, in no particular order:
* "Saying Goodbye: A Guide to Coping with a Loved One's Terminal Illness" by Okun & Nowinski
* the four things that matter most
* final journeys
* the grief recovery handbook by John James [I organized my family to go through the book+exercises together in pairs. I think if I was doing it again, I would've combined the 7 sessions into 2-3 sessions, everyone partnering with a different family member. We did it while my dad was still alive.]
There were others I read that weren't useful, but for each of those 4 above I'm glad I read them.
One book that I wish other people around my mom had read to support her, and that I was glad I read:
* Being there for someone in grief. I made a summary of this book and I think I gave copies of my summary to a few of my mom's friends so that they'd know to better support her.
One thing that I wish someone had told me:
* I didn't feel like I got a final goodbye. I did have moments like that, but I kind of wish I had one that was more of a final goodbye.
* When dad was in palliative care, there was a point where he could talk and communicate, and then over the period of a few days or maybe a week, then he wasn't really able to talk and communicate any more, and so by the time I realized that we'd had our last proper conversation it was too late to have a proper goodbye. I wish someone had told me that that would be a thing, that all of a sudden he wouldn't be able to properly communicate and so my last conversation with him will have been and gone even though he was still alive
A thing I'm glad I did:
* I read out to my dad 2 of the 3 sections from the "grief recovery handbook" "grief letter" of my relationship to my dad, to him out loud, while he was still able to communicate. i read out the "I apologize for" and the "i want you to know" sections and skipped the "i forgive you for" section. I'm glad I did it like that, and I'm glad I did it in general.
I hope this is helpful to some

hirundo · Answer

I found it quite difficult to simply get a prognosis. When it's that bad the medical pros seem to get increasingly ambiguous. I had to read the seriousness of the diagnosis between the lines and in their expressions. Asking a straight forward question about the odds of survival yielded nothing of use. I only realized that my dad was a short-timer by googling the details of the various results.So I want a way to be able to say "give it to me straight, Doc" and get a straight answer.