Monday, April 07, 2025

Crisis

›
Reclaiming my VHL status and making something of it I decided, many years ago, that my derby name would be cortisol crisis.  Yesterday while...
Sunday, March 30, 2025

Click Click

›
 A while ago I began to get a click in my neck, loud through my ears from time to time, it was a new and satisfying sound. Now I'm wonde...
Saturday, March 29, 2025

Am I breathing

›
To know your body and to really know your body are different. I'm sure I fluctuate.  Since the news I'm mostly thinking about my bre...
Friday, March 28, 2025

Head in a box

›
I knew that eventually this one would need to come out. I expected it but I didn't think it would be now. I hoped I had longer.  And now...
Thursday, March 27, 2025

nerves

›
I hadn't realised that I was feeling nervous but of course I am. Every year, sometimes more often. Each time. Getting ready to put on a ...
Tuesday, March 25, 2025

reunion

›
It started with a LinkedIn message and my caution. Then trust we talked and laughed. I felt like the 20 something I once was. He remembers m...
Tuesday, March 11, 2025

There is always spring

›
There is a lightness in March, a month that all those years ago was my brother going in for his first and straight forward, VHL related oper...
Thursday, February 20, 2025

feeling things

›
Today I've mostly felt a little small and sad. A strange mix of emotions over the week and I'm not sure where to put the feelings.  ...
Saturday, February 01, 2025

Daren had left the chat

›
I was scrolling through my phone today. Looking to distract myself and then I saw it.  The chat I set up to update people on my kidneys.  An...
Tuesday, January 21, 2025

if Trump is right...

›
And god saved him... Then I think we will have to admit that the ancient Greeks had it right and the gods see us as play things. They will f...
Monday, January 06, 2025

Fear of a mother

›
 As I talked to my mum on facetime last night I saw the fear she feels for me. This was linked to me saying I thought maybe I needed a chang...
Tuesday, December 17, 2024

Distracted

›
 I had a cry yesterday and I wasn't sure quite why, but it had something to do with the pain of missing Daren, my brother and my dad. I ...
Monday, November 25, 2024

bubbles of grief

›
I feel like the grief over you had been like bubbles I'm trying to control, that are drifting around. Bursting quite randomly and of dif...
Wednesday, October 30, 2024

community

›
My biggest challenge that isn't VHL. This one is hard. But as is my way, I'm going to find positives to hang on to.  As always my fa...
Tuesday, October 15, 2024

As time goes by

›
 So often I find myself remembering the importance of my dad's most important life lesson. Everything passes. The good and the bad.  Tod...
Friday, September 27, 2024

clinic

›
I wonder on days like this how much of my life I'm waiting in clinic.  Today I'm hanging about to get my eyes checked. I am just now...
Sunday, September 22, 2024

funeral count

›
 My first was my gran, my mum's mum. I was 8. I didn't go to the burial. It was very white and I sang all the hymns with pride becau...

last letter

›
 The words on the page, the drafts and the post-it notes. All trying to comfort us and give an explanation. He needed us to know we couldn...
Monday, September 09, 2024

tribute

›
I've experienced a lot of grief in my life. Some simple and some less so. Your death is both.  I'm torn between understanding and co...
Saturday, September 07, 2024

Finding out more

›
 Today I found out a little more of my Daren's last days and how he took his life.  Perhaps it will help me process this, but right now ...
Friday, August 23, 2024

Daren

›
  Daren You’ve left a big gap in my heart. When I think of you, I think of your smile your talent and your gift for making me feel loved. ...
Saturday, August 10, 2024

age and time

›
I was my daughter's age when my brother died. I was living a fairly normal life, some shit had happened. To me and to others but this on...
Sunday, July 21, 2024

mid July and the cotton is high

›
 There isn't much VHL wise going on, the good days, the days to enjoy and feel the laziness of all being as well as can be expected. A l...