Thanks so much, Colleen, for linking me to that discussion. @stephenrfleury directed me to a wonderful blog post that his wife Suzy did when he was in treatment. It was eye opening! As expected. We've since found out that my husband will be have concurrent chemo, so that expands the concerns. We've received good direction so far from the medical staff. One thing that Suzy said a few times is to always go to the doctor for actual direction, not the internet so much, as we are prone to do. That said, the internet has helped me learn terminology and definitions of the various words, so when they are mentioned I know what they are and don't feel sucked into a mental hole while we're meeting with doctors etc. Simple words like margins, resection and debridement. Other preparation that makes me feel confident is listmaking, (such as for contact info), writing out questions, and staying on top of my husband's records on the hospital's app, such as test results, after visit notes, reports from pathology. My husband does none of those things.

We tried to glance at test results so we could prepare our questions in advance. We also kept a log of events for reference (unusual events, appts, etc.) and recorded each discussion with doctors for later reference.