Caregiver spouse needs pre-radiation advice

@prettyflower, I had SCC on the base of my tongue and a couple of lymph nodes in the fall of 2020. I had chemo and proton radiation, since have had multiple cleans scans.

I wrote a blog during my experience (non-revenue generating) if you would like to review it. You can read it at:
https://stevefleurysblog.com/2020/10/29/part-1-the-beginning/
More importantly, my wife, whose care pulled me through the treatments, wrote a wonderfully insightful post of lists and non-advice advice.
https://stevefleurysblog.com/2021/01/05/lists-and-non-advice-advice/
Hope it provides value to you.

Thank you, Steve and Suzy. You are bookmarked!

Hi @prettyflower, in addition to the wonderful tips you got from @stephenrfleury, I'm tagging fellow members like @nnurse @thomason @lindst427 @kathyheidt, who have experience with sinus cancer and radiation.

I can see you like to be a prepared caregiver. You might also appreciate this older discussion that includes recent posts.
- How can I be a supportive caregiver? HPV Squamous Cell Carcinoma
https://connect.mayoclinic.org/discussion/diagnosis-and-discussions/
What helps you feel prepared as you accompany your husband to appointments and provide care at home?

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.