Thursday, July 21, 2022

long life milk

Living somewhere else is about accepting long life milk

Tuesday, July 19, 2022

where will I be scanned next

 Who knows, looking unlikely that it will be here. But I do need to have my 6month one. 

I know I do, but only to ease my mind, I'm sure of that. 

Today, I sat in my pjs with my husband and friend and we were talking about life's path. I have lived a very full and happy one but I still see a long future. I think that is why I feel frustrated by a small hiccup in the road. Very small, it will resolve but it occurred to me that asking me to wait for something I want isn't a good idea. It's not so much that I'm running out of time and more I need to use my time. I don't like being bored. I have been happy to slow down these last few years, take things as a pace which has helped me connect with my daughter and get to know different sides to my self and others. But I'm restless now, I need another thing and I don't want that to be VHL related. 

Monday, July 11, 2022

In a different world

 An old friend's wife died yesterday, she was young and had been told 10 years ago she was probably going to die of cancer. She was remarkable to keep going, I only ever saw her brave face. I suspect her husband and son saw many more faces. I wonder if she had days when she would cry in the shower, scream why me, get angry at the universe, lie awake terrified of leaving her son behind. I expect so. I live knowing that I'm being monitored and I've come to a sensible realisation that this isn't the same terminal as she faced, just life limiting. 

Just. 

I don't know how they did it, but they kept on hoping and kept on. 

Now her husband and son need to learn how to live without her and that's what breaks my heart. 


Friday, July 01, 2022

once I couldn't keep my eyes open

I remember it well.
You don't forget that

There are moments in life when you want people to do you justice... Today I hope I did that. For others. It matters