Monday, February 16, 2026

missing the sun

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The sun is on my face as I sip tea. Grateful that I'm on half term and that there's some sun at all. I miss Malawi for many reasons ...
Wednesday, February 04, 2026

grief ball

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My brother grief ball hasn't hit for quite some time. But it did today and I missed him so very much. 
Friday, January 30, 2026

guess the VHLer

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I don't know what other things the people in this space might have fallen to them. But I reckon that of us sitting here are all guessing...

fasting and other advice

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I have clinic today. So perhaps when this regular potential life changing might happens my disease is more on my mind. Tits night then expla...
Saturday, January 24, 2026

You can only work with the body that you arrive with

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 There's a lovely, lively lady who does roller derby with me, we're both just as useless as each other at skating backwards. She has...
Sunday, January 11, 2026

Rolling back in

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 It was on my list of recovery goals, and today I went back. Much more emotional than I expected, each time I referred to the length and dif...
Saturday, December 27, 2025

more of his eye

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Because of my mum I think, I haven't tried to connect with many other VHLers. Some people find it useful to find connection on the miser...

2 years ago

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I went in for kidney surgery - my second, my first with a robot.  I thought things would be looking up after that. And yet no, 2 strange and...
Thursday, December 25, 2025

What's silly

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What's silly about Christmas is the sense of occasion. The pressure for it to matter. The day. The tradition and the food. And, when you...
Tuesday, December 23, 2025

judged

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Ummmm Feeling safe in your own home  Judged  Finding space  I think that's what family should feel like, not judged, just loved.  Ummmmm...
Friday, November 21, 2025

Not just mine

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 It has been an interesting experience seeing my normally very healthy and well out together husband have something more than a sprain, go w...
Sunday, November 16, 2025

I couldn't say your name

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I sang one of our songs today, it was strange and wonderful. The audience got it, I gave context of the joke in it. It was very well appreci...
Friday, October 31, 2025

oncology

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It's a word you know, when you know, you know.  At 19:23 on a Tuesday evening, just as I decided to sip the last bit of wine offered by ...
Sunday, October 19, 2025

new MRI

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Adding another one to my list. The hospital is snuggled into the streets of London. A smaller place with art on the walls and good enough si...
Friday, October 10, 2025

missing

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Grief, that ball bouncing around, hitting and hurting. The graphic of that circle starting small and then getting bigger. I've only thou...

it will end

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It is 3 calendar months. I have swum and lifted weights. I have got to a stage where I'm not always aware of the pain. I'm traveling...
Friday, October 03, 2025

Visiting

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 The tables turned, me finding the right ward, asking 'do you need anything.' half knowing that question involves more than a simple...
Tuesday, September 16, 2025

hospital

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Surgical review today. Feels almost pointless - except I'll maybe get some reassurance about the ongoing pain. But I'd fault just ke...
Sunday, September 07, 2025

a book

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I've just finished a book that's made me think and feel.  I usually read to not do those things.  But I also loved it and just want ...
Friday, September 05, 2025

sadness

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 I am feeling sad, I crave security and I have so much of it but at the same time it feels like dry sand in my hand.  I have so much and yet...

RTW

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 For once I am taking my own advice and I think partly why this is possible is due to the level of support I feel from the colleagues around...
Tuesday, August 26, 2025

looking after myself

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 I know I say it each time - I say next time I'll take off all the time I need and do a proper phased return. And then I just find ways ...
Wednesday, August 20, 2025

when the world shrinks

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I'm used to being independent. One thing I don't miss about Malawi was I didn't ever truly feel that. I needed more people than ...
Monday, August 18, 2025

I will always remember you

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I didn't know it on the day but a treat ago you lost your battle and I lost you.  You'd sent me a happy by text a few days before. A...
Saturday, August 16, 2025

47

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This surgery and this life has been making me think a lot about the letter.  49 without screening 52 with Kidney cancer  The plan to have a ...
Monday, August 11, 2025

recovery update

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It's almost 5 weeks. I've done busses and longish car journeys but they do make me ache a lot. I thought I was through the fatigue b...