Of dying.

Of losing more functions

Of not knowing how long I’ll be unable to do anything myself.

Is everything set up in case someone else needs to do it for me?

My will, passwords, authorisations, funeral wishes, letters, videos, dear Lolita…

Ensuring there’s time to make a few last memories, have some joy whilst I  can.

My life in the 2 weeks before surgery. The date was confirmed just two weeks before.

Thankfully the intensity has past with the surgery done but it’s not fully over until the risk of complications, primarily a risk of cerebrospinalspinal fluid leak into the brain has subsided. The next 48hrs are the most critical and then after another week it starts to subside.

So the fear is still there especially while I have tubes literally coming out of my skull and hanging down draining blood into a bottle I have to make sure doesn’t get pulled out. Imagine trying to sleep with these tubes wrapped around your body and that fear.

I might look ok in these photos but the fear is still very much there.

The swelling apparently has yet to be in full swing too so I have that joy to look forward to.

I’m sharing this as firstly I think it’s important for people to know that I might post the joyful photos but I’m not invincible and it’s ok to share this too.

But also because the fear can quite honestly make me a total nightmare and the people around me have had to put up with a lot in the last couple of weeks. I know they understand and love me but I also know that I’m so lucky to have such an incredible family and friendships that accept and deal with it all. It’s been and still is so so much for all of us, not just me. This is my pure gratitude to them. One day I will make it up to you all. I love you so so much. Thank you.