I am beginning to wonder if access to the internet has a big effect on prognosis. I do not just mean reading studies and browsing medical pages, but also "talking" with others going through the same things.
I had a strange feeling that the communication between the neuro-oncologist and radiotion-oncologist was not happening. This was in spite of both departments telling me that combined therapy was what they recommended.
So I called neuro-oncology and got through to the nurse there. She said "you are just down for radiation". It wasn't until I insisted that this was not true and that both departments had advised combined therapy that she agreed to talk with the Dr. and to call me back.
Within 30 minutes she called me back and said "you definitely need to come and see the Dr. before that starts to decide on dosage etc." and gave me an appointment for the same day as my simulation appointment.
This does not inspire me with confidence and makes me feel very sad for those people not so used to the internet, or those used to just trusting that the Drs. are doing the best. I am sure that there are doctors and centers with better communication, but right now I am furious.
On a good note, the tremendous amount of support both practical help and love from friends and family near and far is keeping me sane. Thank you.