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...
Monday, January 01, 2024

The robot did it

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 6 days ago I went in to have the kidney tumour that's been quietly growing for about 5 years removed. They found a tiny one tucked behi...
Friday, November 24, 2023

hello new place

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I'm sitting waiting for an MRI. A new one. The form is almost the same. The wait feels a bit different. I'm not nervous of the scan ...
Saturday, November 18, 2023

when you are not

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Writing to be seen
Friday, November 17, 2023

maybe when

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Maybe when it's too repetitive Maybe when it's not a simple cure Maybe when you can't feel too much pain Maybe when your body sa...
Friday, November 10, 2023

Time to go...

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There is a clear theme when you have a disease like VHL... waiting. Waiting for appointments, waiting for results, waiting rooms, waiting ga...
Sunday, October 15, 2023

happy anniversary

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 8 years since that day that I didn't know would be a long month  you never know what's round the corner
Wednesday, October 04, 2023

How long is soon?

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 What does soon mean then?  In Malawi if you say now, it's an unknown amount of time, if you say now now, it's now.  In the NHS when...
Sunday, October 01, 2023

I've got cancer

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 Which one should I go for next?  so far in my various communications I have given the news in a range of ways A cyst that is now more compl...
Saturday, September 30, 2023

As expected

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 There is an oddity in all this.  "it's time for it to come out" and I had been anticipating it. I can track the growth and kn...
Thursday, September 28, 2023

and so it comes

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It was the night before clinic and all in the house, everyone was quiet, even the mouse. Or I'm being quiet. I'm quietly frightened....