I have really starting thinking about ideas for the book and pieces here and there. I wish that I had some voice recognition so that I would be able to walk and talk to myself because I have been bursting with ideas, but I am missing the time and opportunity to sit down and get started. Oh well, no time like the present. To be honest, I am also looking for a distraction in my life. I have recently experienced a loss that I cannot go to in this forum. It has come to my mind that while I cannot pour my soul out on *that* topic, I hope that I can experience the cartharsis that only writing seems to offer me.
First... while the book may talk about the diagnosis of my tumor, the surgery, and the recovery, I want the central focus to be that while I look well, I do not feel well. I have yet to read an account of a brain tumor survivor that can successfully convey what it FEELS like to have a large portion of your brain removed.
I don't think that I could have explained it a year or two ago. However, the facts of my life after surgery have forced me to repeatedly advocate for and explain myself to my medical care providers and the work force. This task has turned my vision and my perception of things into a muscle that has gotten much exercise and I feel my mind is ready to take on this task.
If you are reading this far and are interested in what I would like to say, something that would help me in the writing would be for you to ask me questions that you might have if you were facing such a life changing surgery.
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Some things I don't know [in no particular order]:
1) What were ALL the steps taken to get you diagnosed and how long did it take?
2) How much did you have to fight with your insuranace and docs to get an accurate diagnosis?
3) How could your friends and family have supported you better pre-, during- and post-surgery times? (you don't need to name names, just in general terms!)
4) Looking back, would you have postponed the surgery knowing now how long & hard thhe recuperation would be?
5) If you son had been older, how would you have explained things to him?
6) How could your work have supported you better? What personnel/roles were helpful versus unhelpful? Why do you think that was? (meaning, was it personal, they just didn't get it or was it some weird policies they had in place)
7) Do you think you oculd have survived this long or this well without the surgery, but with the headaches?
possibly more questions to come - gotta get the kids to bed right now! :)
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