We do things similar. I know appearance helps in many areas, besides just cancer. One of my oncologists told me once to get/keep in shape, being I had so many recurrences, she said, so I won't be refused treatment, and also help in my recovery. I do write out questions for myself to ask, its just I don't usually show it, and rehearse them at home, and then again in the waiting room before I see the doctor, think of plans/answers A, B, & C, and keep the list on my person, and even look at in the exam room when the nurse leaves. I also have a written timeline, similar to our signature, including who else I saw since my last visit, and my current prescriptions and highlight ones I need. Which I do keep in hand, including current blood work that may have been ordered by another doctor.

I like doctors that have residents, physician assistants or nurse practitioners. I tell them more than the doctor, being their time is more limited, and let their assistant decide what is important to say to them. Often they bring up items for discussion or the doctor knows to keys in one of the areas I mentioned, if not, I bring up important matters myself.

It's a lot of work just to stay healthy, and on on top of any issues, and have lots of experience, unfortunately, with 9 different hospitals, including 12 current specialists, and just finished my last dr appointment today, at a new CCC, where my doctor was recruited, totaling for the year with 95 doctor visits, 1 hospital stay, 1 surgery, 3 procedures, 3 scans,12 blood tests, 2 swallow Studies, 20 SLP, 2 EMG/nerve study, and 10 physical therapy, and it was a quiet year lol.

Good luck formalizing your support group, and hope this helps.

I can't add to my comment, but wanted to mention that I may have confused different levels of my meetings between those thar are initial visits for 2nd or 3rd opinions vs the rest which are mostly follow-up now, and developed a relationship with the doctor over time, and know how they operate/want. For my initial visit, I do go all out like a job interview. I have all my records, well most, since their in the 400 page range, including all my cd scans, reports, doctor notes, if needed.

Today, my 6 month follow-up, my doctor got a kick out of my radiation mask I decorated as spiderman, and asked me to e-mail a copy to him, and then we spoke about a recent abstract of his I found he published between doctors in regards to the early feasibility of receiving Proton Therapy for HNC, which I'm part of follow study, so he was happy to speak about that, and a concern of mine is to keep my doctors happy with me, and speak of other non related health items deepening on time, but it's two people having a concern/respect for each other, and I don't want to loose any, and most look forward in seeing me. Contrast MRI in January and PET/CT in June.

I agree with Paul.
I know that appearance and level of functioning is a very important consideration of the team when deciding whether to offer treatment or not. I also think that they like to see that you have an active support person on your side.
Kris had a stroke when he was 12 and has a residual hemiparesis. He was interrogated as to his level of functioning. They were particularly concerned when offering chemo or not and he was tested quite extensively for limb/nerve functioning.
The Tumour Board also felt a lot like a conveyor belt. Being as how all the patients initially waited together in the waiting room. Then were sent enmasse down to X-ray for the dental Panorex X-rays. then we were all put in little consulting rooms and waited. We could see the others being led up the corridor when their turn came to be examined.
Boy was that examination room crowded. It seemed like every man and his dog was there. Waiting for a glimpse of the tumour. Wanting to get a look at Kris. Lots of questions about his general health and symptoms. Lots of the surgeons coming to look and feel his lymph nodes. The radiation guys getting in too. Then Bob the Dentist examining and saying what teeth needed to come out.
Then off we go for a coffee and come back in an hour or so. More waiting
Trepidation. Who will come to see us and tell us the verdict?
I felt we only got a very brief explanation of what treatment entailed, and what to expect. Really we had no idea and we just floundered our way through.
I do think that this could be done better. I think the Nurse specialists should come in after the Dr's and give a much better and detailed explanation of what treatment entails and what side effects to look out for. Who to seek help from during treatments.
Personally, I would have loved to have talked to someone who had been through treatment. This was such a fearful time in our life..
Tammy

Thanks again, Paul and Tammy. I like the idea of having a medical history at your fingertips and forging a relationship with the doctors as time goes on. I can also identify with the conveyer belt and "every man and his dog". My son was with me for the last one, sitting in the front row. He put his head in his hands when the doctors discussed how "lumpy" the tumour was and the nurse comforted him not me! I noticed how the fellows and registrars were very proactive, perhaps vying to prove their ability (not very charitable) or, knowing they would do a lot of the legwork, they wanted to familiarise themselves with it all. I sat there with my fingers crossed and my heart in my mouth. It was bearable though, because I knew they were looking out for me, however clumsily.I thought that I might not have received much post panel explanation because there were worse cases there. It's bewildering and follow up is essential.