Tuesday, December 17, 2024

Distracted

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 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

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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

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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

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 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

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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

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 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

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 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

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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

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 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

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  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

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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

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 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...
Sunday, June 09, 2024

my body

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 I am a slim person, always have been, biggest I've ever been is a generous size 12 and even then my legs stayed skinny and my arms and ...
Friday, May 31, 2024

you left the chat

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Today I got good news. The surgery was very successful and I am once again kidney cancer free.  Of my years on this planet that's about ...
Tuesday, May 28, 2024

inspiring

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It's lovely to hear and an odd one at the same time. Once a neighbour wrote a essay at school about someone who has inspired you and she...
Sunday, May 12, 2024

The time flies

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 Those of us who have a long MRI know that when you just need one bit done the time flies. Using the counting of breathing in and out and ho...
Saturday, May 04, 2024

scan coming up

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 Just of the abdomen and just routine and just part of the routine and just what happens. This is VHL awareness month - well rare disease bu...
Friday, April 19, 2024

My uncle

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 When my dad died a friend of mine said, it’s like your anchor has gone. It was and still is. Grief finds ways to sneak up on you and today ...
Saturday, March 23, 2024

fade

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 This morning I looked at my newest set of scars and wondered at them, their size and colour, I don't remember how ling it takes for the...
Saturday, March 02, 2024

about 9 weeks in

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 To remind myself that 9 weeks in and I really do feel like it never happened, except when I look at my tummy, the lines still an angry redi...
Wednesday, January 24, 2024

classic recovery

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This is to remind myself for the next time. You can do too much and that's part of it.  I was in a bit of pain yesterday and I think it ...
Saturday, January 13, 2024

remarkable

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 When I look at at this time I want to remind myself of how remarkable it was, to be so well, to be back at work and to be able to do so muc...
Thursday, January 04, 2024

slow walks

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 I'm quite bored, I can't do enough of anything to feel anything like independent. Knowing I couldn't escape far. But the recove...