Saturday, October 23, 2021

Facebook memories

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It's this time of year when Facebook reminds me of that time. 6 years now, 6 years I really didn't think I'd have on some of tho...
Saturday, October 16, 2021

how she died

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I wonder what it was like for my Gran, the one I never met, that my dad hardly knew. I wonder what her death was like. Dying of a brain tumo...
Friday, October 15, 2021

my friend...

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A pal of mine is having brain surgery today. It's the 6 year anniversary that I was admitted into hospital for my second brain tumour. S...
Sunday, October 10, 2021

I don't remember

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I do. I remember being so utterly helpless and so in need of someone to help me take a shit in a bed. I remember only being able to piss a l...
Friday, October 08, 2021

happy birthday

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It's been a hard week, I don't recall feeling this level of grief for a long time. When after his death it seemed easier. I think it...
Thursday, September 16, 2021

stillness

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It's the stillness I have here that makes it better for me I think. Reflecting on my work like balance, seeing and hearing about the pac...
Wednesday, September 08, 2021

rare but treasure

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It isn't often that I get to be useful in my experience of the medical world, but I could be tonight. I got to say things that helped  I...
Tuesday, August 31, 2021

median age

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49 So, about 6 years to go then.  What should I do? I know, live my life to the full. Maybe try and spend as much time with my daughter. Per...
Sunday, August 15, 2021

the wood and the wire

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Tonight I watched a new tribute to my dad. It was beautiful. It was real. It was important. 
Saturday, August 14, 2021

Belzutifan

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Today on Facebook I saw that the drug belzutifan has been approved by the FDA. I know it might be some time before it's approved by the ...
Friday, August 13, 2021

turning 43

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I will turn 43 very soon. Closer to my desk by date. 10 to go.  I've been on holiday and had a genuinely relaxing time. As we get closer...
Saturday, July 17, 2021

driving home for Christmas

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Life can free so very different if you know you have a plan  I'm hanging on the high hope of making it home for Christmas.  I'm happ...
Friday, July 16, 2021

is everything my dad?

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I imagine that this is normal Everything is my dad

scantastic

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Great news, another 6 months. I don't trust it. Not in the way I would if it was the MRI the team, the same. But it'll do. Better th...
Friday, June 18, 2021

I'm not as tolerant as I want to be

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I'm feeling unnecessarily annoyed by the people around me panicking about getting their second vaccine. It is about being able to travel...
Sunday, June 13, 2021

that footballer

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Twitter seems full of people saying what an important reminder that a rich, physically fit white man collapsed in the middle of a match has ...
Saturday, June 12, 2021

planning a scan

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I know that I'm due. My kidneys are on a 6month watch. I feel like I might be the one person who has remembered this.  I'm having to...
Friday, June 04, 2021

a day off

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If I was in Norfolk right now I'd be busy. I'd be helping with the preparations. I'm not, I'm here.  I'm taking my morni...
Thursday, June 03, 2021

I feel lonely

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 because, despite the love and care and the huge amount of support I am.  My dad is dead, so is my brother. Just me with VHL.  And of course...
Sunday, May 30, 2021

how brave will I be?

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A friend sends me links to articles she thinks I will find interesting. I always do, this week she sent me one about a remarkable woman who ...