Sunday, 15 September 2013

My new normal- living with a brain tumour

I still find it very funny that for years, I have lived with family members believing they have a brain tumour. I suffered for over 15 years with severe migraines. Although mine had there own weird auras, I never suffered from the classic flashing aura. My MIL does and I think she always thought hers trumped mine. She would often say she thought that they must be damaging her brain. It turns out mine were likely to have been basilar migraines, the other name for them being brainstem migraines. Too much of a coincidence there, me thinks. They were probably linked to my tumour growing and distorting my spinal cord and causing cranial pressure. The artery that has been engulfed by my tumour feeds into the basilar artery.
My sister is still panicking that she has a brain tumour, she reckons she has all the symptoms. My daughter has been numerous times to our GP concerning disturbing symptoms, that she thinks show she has a brain tumour.
So it is funny that the only one who didn't think for a minute she had one....did.

When you get diagnosed with a life changing event, you start each day as a new normal. I like that expression. I have no idea where I first heard it. But everyone adapts to a life changing event. When I suffered with chronic pain from my spine. I found a new normal. I would stand for hours during the night, reading the daily news. That was normal for me. A can of Pepsi with my breakfast to counter act the effects of my sleeping tablets, was my normal. 

I knew it would take a few weeks to stop the moment when you wake and suddenly realise you have a brain tumour growing in your head. But now I wake and think what is the time. My new normal is, springing wide awake at 4am. I realise this won't happen forever, but if it does I, will adapt and it will be normal. I now open my iPad and catch up on recent posts on all the brain tumour forums I follow and talk on. I used to check out all the blogs I followed first thing. Now they just accumulate and go unread.

Little has changed in the fabric of my life. Teddy my dog is still mad and itches all day. I still reluctantly walk him every day as he is an embarrassment . I drag him or he drags me. People, stop in their cars and laugh. Everyone still comes home from work expecting a gourmet meal to appear as they arrive In the door. But as part of my new normal, I now allow myself an afternoon nap, should I feel the need. I now know the reason I may need one. It is a common problem with people suffering with something growing in their heads. I used to feel guilty, but I don't now. 

In my new bedside book " living with a brain tumour " I found a passage which I immediately highlighted with the pen the Brainstrust sent along with the book.
A crisis can be seen as a threat, a loss, or a challenge. The diagnosis of a brain tumour is certainly a crisis ; if it is perceived as a threat it can be met with anxiety ; as a loss it can be met with depression ; but if it is perceived as challenge, a person can mobilise his or her energy and problem skills"
It goes on to say that a persons personality can determine how you cope with such grim news. I knew it would become my new normal, whatever happens in the future. So I just excepted the challenge and tried to learn as much about it as I could.

That's my, old normal. Numerous people said knowing you'll become an expert on your condition . That's my nature to absorb information. I like to know all angles. My mother in law the day after I was diagnosed said, she was worried I would make myself depressed by researching my condition. She is more of the 'normal', to ignore something and it will go,away. I was a bit insulted that she thought I would get depressed, because that is not in my nature. That's not my normal. That's not my personality type at all, I am a VERY strong individual. That is my normal.

How I am dealing with the knowledge of my tumour is a normal reaction to me. It is my normal. But I have come to understand over the last month that I am unusual and not normal. My GP and neurosurgeon I went to see in London have both remarked on my remarkable calmness and acceptance. And said I was to be commended. A tumour support group I attended last week, want me to reach out and help fellow sufferers. To try and help people have a positive attitude. I wrote about my outcome from my second opinion in London on one of the tumour forums. Here are a few snippets from what fellow sufferers wrote;
Oh my!.......What courage you have !
In awe here at your attitude and bravery Karen. God bless you.
Love your attitude Karen
You make me gasp in admiration!  All of you who speak so calmly....... 
What a woman!  xxx
Karen - you are shaming me to get off my arse and do something! More power to you!
Your posts are so brave and In spite of the grim prognosis, upbeat... 

I find it all weird, as to me I am just being normal.........


Bebe Bahnsen said...

You are a hell of a writer. I say that enthusiastically. Your courage is also amazing. Have you written about your tumor on Meningiomamommas? I would be surprised if you did not find some others who have one in the same place, or at least nearby. Also, many of the people have had gamma knife. Let them tell you about their experiences with that.
I've had two Ms removed in surgery and hope that will be the end of it!
I wanted to follow your blog but couldn't figure out how to. So let us know on MM when something new is posted.


I agree w/ Bebe, you are an amazing writer! Thank you for sharing it on my post!! A lot of us post, some just comment, some are most comfortable reading and find comfort they're not alone. But blogs and websites really help us get to know each other and our unique journeys. Plus it's a way for us to be creative and get our thoughts out on "paper", which is so very healing in itself.

Love the drawing, the baby picture- all of it! I will catch up and look forward to the next one! XO

kym said...

Hi Karen, I am speechless I thought I have'nt checked Karens blog for a while..lets see what she's up to, and I have sat here for 45mins reading everything, I am so sorry but I know you are really strong and positive and have a great family around you for support, sending all my love kym xx


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