Today was our treatment planning with the RO. H had petscan on 12/31/08. Local hospital gave us a cd to handcarry to the tumor clinic on 1/7. Tumor clinic opened the cd and someone's MRI of their brain was there. We were told that the tumor clinic had made a call and it would be straightened out. Meeting today and no petscan. Call to tumor clinic - no petscan. Call to local hospital, in less than a charming tone of voice, and they assure me the disk will be fedex'd to doc by 10 am tomorrow. In the meantime, doc can't tell us if some of the stuff on it is cancer or not as all he has is the written report (likely written by a monkey) and therefore we don't know if we're shooting for cure or control of this thing! Mask done today. Chemo starts Wednesday with Erbutix 1 x weekly and rad starts on Monday (18 treatments 1 x daily and last 12 will be 2 x daily).
Just needed a place to rant.....and a reminder to all who are starting this process to stay on top of everyone involved. Keep notes, keep copies of stuff, keep a calendar and phone numbers handy.