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Sunday, September 11, 2016

I am really disliking the waiting game.

I just want to meet with the surgeon and get going already.The one thing that has kept me sane while playing the waiting game is that I have the opportunity to research as well as meet people who are going through this same thing.  I joined a Facebook group called Acoustic Neuroma https://www.facebook.com/groups/78633792319/
I have already met someone who lives in my city and she let me know there is a support group that she runs and I plan to attend a meeting.  One thing about these groups is everyones story is completely different so as I have been seeking advice I have also need to remember this is my journey and my decision.

As I wait (and wait and wait) I have Googled everything I possibly can, from surgeries on YouTube to pictures of scars. While I know this isn't for everyone I don't like the unknown and if I get as much of the whole picture as possible then I won't feel as though I have lost all control.

After my research my biggest fear is having paralysis in my face......it bothers me to know I might look physically different because of this tumor.  Today we did some family pictures. My mother in law does amazing work, but while we were taking pictures I couldn't help but think about the possibility of it being the last time my face could look "normal" in a family picture.  

I am trying to take control of this situation and do as much of it my way as possible. My way or the highway tends to go out the window when there is a tumor in your head, so finding the moments I can do things my way you can damn well know I am gonna do it.

 I have always wanted to dye my hair purple and seeing as how I could be out of work for up to 12 weeks this seems like the perfect time to do it. I have also always wanted to shave my head and since I am going to choose to do the surgery knowing they will have to shave part of my head I am thinking that a purple mohawk going into surgery will be pretty awesome and full on shave after should meet my need!

Right now, I am grateful I have options and that it really is my decision. I am thankful for my friends who I have told and how much the understand that I need to know I am cared about. I still have some family that I need to tell but they are a little more difficult to tell without knowing exactly what the next steps will be.

Again, this is my tumor and my situation and I need to do as much of it my way as possible and put myself first (HOLY CRAP IS THAT HARD TO DO).

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