diary January/February 2005

At a certain moment one is awaiting the outcome of physical examinations When the outcome is not that good you know that you're life as a patient starts. And that's not a nice life, I can tell out of my own experience.
Had I known of my handicap of not being able to talk or to just eat, I'd rather not have known having a brain tumour. Off course you want to know what is the cause of your problems. Ten years ago I wanted to know that too, I can understand that today. 
But science does not always do the right thing. The only thing what my situation has given me is time, but what is time and you have a body that is not working. Now I am sitting in a wheelchair, I'll never know I am cured of the tumour, because now I have made the choise of not being checked anymore because if the doctors would see a tiny bit of tumour tissue they would want to operate and because of the operation I probably would come out of it more damaged.
When almost ten years ago my tumour would not have been found my life expectation would be some 32 years and than I would slowly deteriorate and eventually drop dead.
A terrible thing to happen, but still when I compare this with how my life is today I'd rather not experience it like this.
Now we have 2 sons and I wish that they did not had to experience having a mother who could not eat or drink or speak anymore. It used to be my dream to have a big family but my brain tumour was faster. From that moment on my life has happened as it is. Luckily I live my life with a lot of humour. If I was able to talk it would be with laughter in my voice (as does my cousin Marlies as well)
The only thing that I can say to take life as it comes and enjoy every day of it.
A day without laughter is like you did not live that day.
This story is not because I am an very sad person because I am enjoying every moment of time I am here. And we are very happy having our kids.

love, Marjan