Thanks, Paul. We have our own guidelines in New Zealand too but I was interested in the Australian document. I like the American Cancer Society link above, "The Forgotten Patient". As for our local guidelines I find them "aspirational" rather than actually carried out. I feel my care has been ad hoc with no post treatment plan of any kind. I have had to be my own advocate. No one spelled out for me what a severed facial nerve would entail, what would happen to my teeth or how to avoid ORN. I've been fortunate enough to have access to a support group initially run by the hospital where we have been informed quite well about H&N cancer by some excellent speakers but I grieve for my own case where there has been no continuity of care and each new doctor is confronted by my complex notes and can't tell me anything about prognosis.
As far as honesty goes, I've witnessed a hunger for information in quite a few in our group. There's a contradiction though, that I feel in myself too. We want to be told the truth like adults but we want it done in as positive and hopeful a way as possible. Another theory I have is that I come across as a bit naive when I'm in the consultation room so they go easy on me, thinking I'm not intelligent enough to understand the info or brave enough to face it. No matter how I prepare for consultations, there's no guarantee I can act like a rational adult while in the room. I'm even worse if I have a support person!