I agree with Nelie that it can be difficult to struggle to maintain the big picture of what is going on in treatment, especially when you take into account the fear, anxiety,nausea and severe lack of energy that comes into play.

As John's primary caregiver I take on that role but with my own on-going heavy concern and a full time job it's also hard for me and I'm not the one who's ill.

The first week of treatment John had trouble with his PEG and had a fever so we had to go to emergency in the middle of the night. The cancer hospital he goes to is a university teaching and research hospital but they don't have an emergency so we had to go to a sister hospital. The first question from the triage nurse was: who's your doctor at PMH ( the cancer hospital)? I paused because at that point there were 3 doctors involved - the ENT/oncology surgeon, the medical oncologist and the radiation oncologist.

I gave the name of the radiation oncologist basically because he is the one we like the most. He's quite young and very warm, is open and encourages all questions. He does seem to have the best overview but when it came to asking his advice on possible participation in a follow-up trial he had to say he just didn't know because it wasn't his area.

I think it's easier to pull together an overview and introduce possibly new info that you've read about etc once you're well into the process. At the beginning, at least, we found it next to impossible.

Mary