This disease is relentless, well it certainly feels it right now.
https://vimeo.com/118914870
As William Dafoe makes clear, getting told over and over again. So much so I've forgotten what it feels like to not have something happen. What is good news?
The latest is a brain tumour, left cerebellum and near the brain stem. At the same clinic my father was told he needed treatment on two tumours.
My mum wants me to be angry, she is but I don't feel those things right now, I feel sad and scared; since having my daughter each time the news is bad I get frightened I won't see her grow up or that she'll have to live with me as someone I don't want to be and that frightens me even more. My father isn't the man he used to be. It's taken him a long time to loose his body to VHL and he's been very stubborn about that and I don't mean he's fought it I mean he has taken a long time to accept the possible help that is out there to get used to the worse body VHL has inflicted on him,. That means that he hasn't been able to adjust in ways I think would have made him a happier person and has left our family with a very different man to the one we used to know.
That's something I'm determined I won't do, each time this disease steals part of me I'll find a way round it, I'll fight I guess. I'll do my best to be who I am, whoever that is! (Although you can't deny that my dad's body seems capable of withstanding every kind of operation possible)
As always I've told people in my own positive way of the latest bad news and reached out to my friends and family who have gathered round me and made me feel loved and supported, telling me how strong I am and how I'll get through it. And when I really don't feel strong they hold me up, love me and I find that a comfort and a blessing and I know that no matter what I am a lucky person because they are there.
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