Thank you for sharing, @lifeworship, and I'm so sorry for your loss and your own health struggles. I didn't mean to make anyone sad, although that's probably why I typically avoid talking about it in much detail, especially when we were going through the roughest parts. We have a lot to be grateful for and at the end of the day are truly are pleased with the outcome thus far (who knows what the future holds), but we think things could have gone a little smoother too. The hard part is figuring out exactly what could have been improved. Like I said some of it was easy - plain and simple communication with a clear plan. There were other events not included above that were inexcusable to me. But I'm not questioning the medical decisions themselves per se (in our case we did work with a full oncology team exactly for their expertise in determining treatment plans, and regardless of some frustrations we still wouldn't have changed that), but in how they were handled and communicated.

No matter where you seek medical treatment, trying to hold on to any sense of security and control is so important when you've lost control over what's happening to your body. I guess that's really what I was getting at: how to give the person and their caregivers any sense of security and control, and so much of that depends on knowledge: too little and you feel in the dark. Too much and maybe you're paralyzed with fear.

Again, I can't imagine being a doctor trying to walk that line of how much information to share with strangers (although I think some care more about finding that balance than others). It's hard enough to sort that out when going through it - you have so much on your mind and you may not know what's best or what to ask your doctor to help guide them in determining how much to share. What surprises me though in our case is that even looking back at everything we know now, it's still not clear exactly how much more information would have made a difference. Maybe it wouldn't have, who knows?