median age

49

So, about 6 years to go then. 

What should I do?

I know, live my life to the full. Maybe try and spend as much time with my daughter. Perhaps spend some time in another country, live life. Live Love Laugh.

And also... Be at the other end of that Bell curve... Love until I'm a healthy 90. 

the wood and the wire

Tonight I watched a new tribute to my dad.

It was beautiful.

It was real.

It was important. 

Belzutifan

Today on Facebook I saw that the drug belzutifan has been approved by the FDA.

I know it might be some time before it's approved by the UK, I know I might not be eligible to use it, but I hope so much that this means I can look forward to my life. A life that might not have so much surgery, one where I can take a tablet and avoid being cut open and all that that means. I'm crying, I feel like they're is a new layer of hope on my life.

I don't quite know what I'm feeling... Relief maybe, like a breath I've been holding can be let go. 

I know this is still just the beginning, how many times can you take it, is it permanent, will I find out I suspect. 

turning 43

I will turn 43 very soon. Closer to my desk by date. 10 to go. 

I've been on holiday and had a genuinely relaxing time. As we get closer to home the reality of work and real life has been creeping in. With that my dreams had changed. For the last few months I've dreamt my dad is still alive, I hug him and hold him. Confused by the diagnosis of death. Trying to figure out what we do 'legally' seeing as it's so patently obvious he's still alive. But the last two have been different. He's dead in those and I know it and I can't hold him. Maybe I'm just processing this. Maybe my mind wasn't ready to let go. I'm still not. I want to keep my chance to cuddle him. And properly, as it hurt him to squeeze too tight in the last years of his life. He couldn't really give me the huge hugs he did when I was younger.