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Christine a long rambling post
Wed Mar 21, 2012 10:38

Dear Christine,
I am so glad to hear back from you such good news immediately post op your second time around. You will be good to go again pretty soon, once they can get you slowly weaned off as many of the drugs as possible. Sharing your meningioma experience and medical news probably helps our other new readers more than you will ever know.
I want to welcome you to the very exclusive "double dipper surgery " club no one wants to join, but we can do it because it means our future survival is more secure. Often referred to as a "second look" brain surgery by a more experienced neurosurgeon who can do wonderful things to extend our quality of life. It might take a few months to really feel better and then it is up to you to get yourself back in good shape again. Full recovery can be a long gradual slow process of gently pushing yourself to do a little bit more each day. and I found that if I did too much on one day I often needed another day to recover. So it seemed discouraging at first as if I was going backwards instead of moving forward. My physical stamina could not be recovered unless I stayed consistently active in little things, like healthy snacks between meals and got dressed and got out doors for brief walking periods of sunshine and fresh air. At first even standing and taking a shower was so exhausting I needed to rest for a while, but gradually my strength was renewed, it was hard to stay really positive and encouraged on some of the bad days, some days after a good cry over my own weaknesses or a healthy snack I could manage to get going again. I had an unexpectedly hard time for a while after they weaned me off the strong steriods, after the second time I knew that is quite normal and to be expected so it didn't bother me quite as much emotionally.
Sharing our medical experiences can help make us all more flexible and more adaptable to the many changes happening in life that are the only constant in life itself. Everyone has their own unique challenges in life and dealing with any recurrent brain tumor is like having a part time job.

Yesterday a nice lady yoga instructor told me finding my own personal incentives and paying attention to my own body signals along with patient determination and perserverance are essential ingredents for self control and achieving self mastery. We are always seeking a safe balance in our lives, a new balance of stress and relaxation that works successfully for us.

Ok I know I'm just rambling, sort of recalling and recording her message for myself right now by writng it down and re reading it to myself and hoping it will really sink in to my own mind as food for thought to help me prolong my own long term survivorship.
Ta ta for now, I've got to take my own advice and get outdoors for a while right now.
It is so good to hear from you Christine. Just go easy and take baby steps for a while.
You are really doing great!
I know your face and head feels like you have been mugged or that someone hit you with a brick. Believe me you, self healing is really hard exhausting work, even if it feels like you are doing practically nothing....and especially once you begin to look normal after the bruising fades away and swelling recedes other people might not understand.

Many thanks for taking the extra time to write all your details and thoughts to us Christine.

I had to learn to go slower, take my time and really thank God that I have been given more time to enjoy life. Life is such a beautiful free gift and our time is so precious and can be so short. I still have to choose every day how I want to spend it to help make a small difference for other people and I can not help anyone else, unless I learn to take better care of myself. I have learned that true healing is really an inside job that takes constant attention and internal self motivation of body, mind and spirit.
Please forgive my own journaling writing style of recording consciousness stream of thought, its really my own form of self therapy. It helps me to write every thing down. I know it is hard for some people in recovery to read my long posts, and I do hope they realize that its perfectly OK with me if they don't want to or are not able to.
GBYAY Anne

  • Doc follow up todayChristine, Mon Mar 19 20:32
    Hi guys, Went for my first follow up today and the NS said he was able to cut out the main vein supporting that ugly thing and take out all of the tumor so we're hoping that stops anymore regrowth... more
    • Christine a long rambling post — Anne Breen, Wed Mar 21 10:38
      • Thanks AnneChristine, Wed Mar 21 21:50
        Hi Anne Thanks for the reply I do read all of them even in my recovery mode, it helps me a lot : ) ......I also think I might try some yoga soon : ) I really just appreciate the time you take to... more
    • CHRISTINEGERDA, Tue Mar 20 02:13
      I AM SO HAPPY FOR YOU AND ALL THE GOOD NEWS, IS YOUR DOC STILL DR SISTI, AND DID HE OPERATE ON YOU? I CAN IMAGINE HOW HAPPY YOU ARE, YOU HAVE EVERY REASON TO BE, LETS KEEP ON PRAYING FOR THE ONES... more
      • Thank you Gerda!Christine, Tue Mar 20 19:23
        Thanks Gerda and yes Dr Sisiti is still my NS he is absolutely amazing, my thoughts and prayers are strong for those struggling with these tumors I hope though it creates much strength for all of us... more
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