May 10th 2010

Not heard a thing, very confused. Started doubting myself that I heard what I thought I'd heard. After all how can I get that diagnosis and then "nothing". I could not believe this, no call, no letter no nothing. I called my maxiofacial consultant who told me I have a Meningioma and that my neurologist had asked a specialist skull based surgeon to talk to me. He also said my first MDT meeting had been cancelled because one of the team couldnt make it. But that's all he knew. Well I was devastated, all this going on in the background and no on was telling me anything. I called the neurologist secretary to ask about my appointment with him which I believed should have happened by now and was told it wasnt even booked yet. I explained my distress at knowing nothing and being very scared. At this time she also informed me that my second MDT meeting didnt go to plan as the software required to view my mri and cat scan images didnt work. So they had a meeting about me with no views of my tumour at all, and another meeting had been called. What a waste of three weeks. She said she would get an appointment sent out to me. Half hour later I couldnt wait, I didnt see why I should so I called her back to be told my appointment was in the middle of June. The middle of June. I'd known since April. I was left to my own devices to wonder, what next. I was gobsmacked. I went home and did loads of research online about skull based meningiomas and this is how I found all my information. Meningiomas are usually in women over 40. They grow slowly and are usually benign. The skull based bit of the tumour was the complex section. I was scared. My jaw still hurt when I yawned and was finding it hard to put a cup in my mouth to drink cofffee so was reverting to using straws. How very dissapointing to know to me this was devastating to the world of neurology is seemed it was no more important than an splinter they would get too later.