ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: KBL on May 05, 2012, 10:06:28 pm
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Today I realized that the main way I identify myself is a brain tumor. (I don't know why it took so long for me to realize this) This thing has controlled my life for over 2 years now. I no longer work ( I have a social security disability hearing in mid- May) I am wonky, I do not drive. I have a tremendous amount of fatigue, partially paralysed face, no tears in left eye and I get oh so very overstimulated in social situations and shopping, new spaces... I don't know if I will ever be able to attend another art fair, farmers market, wedding..... I do not enjoy reading anymore. I do not like that the first thing that comes to mind when I describe myself is brain tumor.
I had an MRI 2 weeks ago and there is no change in the remaining part of the tumor. :) Meanwhile a Dr. told me that after 2 years I should not expect to see any more healing. :( I thank God for my amazing husband, and I do attend a small group from our church. (Regular Sunday service is way too much for me.)
I guess I just needed to whine a bit. Any newbies reading this, please realize my tumor started out about the size of a tennis ball. I didn't have the luxury of waiting very long to research options, the thing was pressing on my brain stem and spinal cord.
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I too went through a period of time post-op when I felt this way, although I had returned to work and still had a social life somewhat I did feel a lot of what you are expressing here. I spoke to my family doctor who then referred me to a psychiatrist whom worked a lot with people with Post Traumatic Stress Disorder......I wasn't keen on seeing him (being a psychiatric nurse it's kind of taboo to see a psychiatrist yourself) but I gave it a good try......within a reasonably short period , between "talk therapy" and medications (brain surgery will disrupt neurotransmitters in the brain, frequently those involved in mood), I was feeling much better, not perfect as somethings will always be a problem, such as hearing and socialising in large crowds.
May I suggest you try talking to your family doctor, and maybe a councillor?
Kathleen
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KBL - you wrote your post as if it was me writing it. Word for word - same things and even the same time-frame.
Here's the only difference - I refuse to allow myself to be defined as a brain tumour. I talk daily about the consequenses of going through all that is happening, I even look in a mirror and want the old me back.
I began writing down the things that I'm thankful for a couple of months ago and I find that there is more to me than a head on a body LOL
Find the good that is going on around you and write it down dear friend. It will give you something to read when you're feeling down.
Goal-setting is something else I'm trying. Mini goals like getting out of bed at a decent hour instead of having nothing to get out of bed for, cleaning a window, picking flowers for a vase, setting the table with your best crockery, cleaning your loo!
Baby steps. If you're feeling dizzy please do use a walker. I use a walker a lot in the house because it helps me to take out the empty cups or bits of rubbish to the kitchen or to fold the laundry and take it to the right room to pack away later.
As for going into noisy places? I put an earplug into my good ear! Hubby taps me when he wants to say something.
We are surely living a very different life than we were pre-op but different can be good when we know how many people care about us. I care.
Love and lots of gentle hugs,
Suu xxoo
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Suu
I love your posts! Good suggestions.
Karen
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From what I have read, most people define themselves by their job. To my mind this is no better than defining yourself my your brain tumor. In a less than perfect world, I don't see a problem either way. However, since you have decided that this is not what you want, I commend you.
So, how will you define yourself?
However much time you have left in life, it is yours to define. Through love, action, the sharing of your life and your story, you can take your tumor from being your identity to being a small part of your identity. A small, but important part of the story.
Try to be positive and embrace all the good things in life, focusing most on the hundreds or thousands of things you can do, not the few things you can't. We are only limited by our willingness to accept limits and do the work of healing that is required.
Following Suu's advice is also a very good thing to do.
Tod
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Karen ~
Thanks for having the courage to post your message that explains how your AN and subsequent surgery has negatively affected your life.
Of course I'm sorry to learn of this but I can understand your frustration with your post-op situation. You are certainly not alone. Many post-op AN patients suffer with various impediments to enjoying a normal life. That you are weary of defining yourself by your brain tumor is both understandable and encouraging because it shows that you are ready to 'take back your life', as it were. and not allow yourself to be a victim of your AN. Only you can do that and it is daunting, especially with your physical limitations. However, with the right mindset and exhibiting the same kind of courage you demonstrated by posting your message, you can eventually improve your quality of life. First, you have to be motivated to do that and by attempting, likely suffer some set-backs and disappointments before achieving your goals.
These forums are here for you and venting your frustrations is perfectly acceptable. I do hope that, the venting done, you'll be able to find the determination to push past some of the impediments denying you a fuller life. Please try to stay connected her as you're among understanding friends who want you to thrive.
Jim