Still waiting

Ah, it burns.
So much waiting, this is also part of the curse of VHL. There are so many things that VHL takes from us and our families. It takes my body away from me, it takes my peace of mind, it takes my ability to plan, it takes little pieces of my relationships too. It took my brother completely and is stealing most of my father. And now? It's nearly taken me.

I wonder if anyone can ever really know what it feels like. The fear and the pain, the frustration and anguish. All words that don't sum it up, don't come close. I had some almost blissful years, where I didn't worry, well not much and not as much as now.

I don't know what to do for the best, I don't remember how it felt, except that it was different to how I feel now.

I've led an interesting life, always have a story to tell, to always have a trump card on most stories. I feared being boring and now I hold my tongue, sometimes. And now I do this, get it out of me here.