Sunday, July 20, 2025

how many more

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Once someone online told me to count my blessings and not my tumours. They did not get it.  Eye - nowt changing and nothing I'm willing ...
Tuesday, July 15, 2025

recovery

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The op was on Wednesday and today is Tuesday. My body hurts, aches, tweaks and crunches. It's not just the surgical site, the other plac...
Friday, June 27, 2025

art therapy

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Today I took a step towards helping myself. My first session. There's so much. That's what strikes me, just my VHL world is so full....
Thursday, June 26, 2025

the nasty one

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As I often do, I described my second brain tumour as the nasty one.  It was. The cyst was.  The lack of pain and inability to function cripp...
Sunday, June 15, 2025

Father's Day

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 Last night I cried because I felt a strange sadness that I knew that I missed my dad, the dad I had seen in a picture in my daughter's ...
Sunday, June 08, 2025

fear

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I'm trying to keep out of my negative head space, I'm trying so hard and sometimes I am good at it.  Not this morning, I felt a visc...
Friday, June 06, 2025

not knowing and knowing

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 There is an odd pressure attached to knowing a maybe date and really knowing, so it can become as close to definite as possible. |It got to...
Tuesday, June 03, 2025

arm

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Today I felt a strange sensation in my arm. The left one. Different to the recent fuzzy feeling. This was more like a dull ache - this was s...
Saturday, May 24, 2025

I don't know

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If he loves me. I'm not even sure if he likes me right now. There's a small distain in his interaction that makes me wonder.  Don...
Sunday, May 18, 2025

fear is normal

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 Today I cried before I went to skate, to hit and use my body the way it currently can. Today I wondered when I would return after the next ...
Friday, May 02, 2025

holding on

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The difference of having this when your young is the people you've collected they are great but can't know.  Now I'm able to hol...
Wednesday, April 30, 2025

3 months

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Not even all of that.  And how do you prepare for maybe not bring and to walk again, or use your arms or become incontinent or all the thing...
Friday, April 11, 2025

gratitude

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My daughter was in a mood yesterday, understandable but irritating all the same. I'm pleased to know that the fog of my pain isn't e...
Thursday, April 10, 2025

Talking to my mum

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 I didn't know how to say all the things, for fear of it all feeling too sad, but I got to say some of the things.  The things I did say...
Monday, April 07, 2025

Crisis

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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

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 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

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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

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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

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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

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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

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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

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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.  ...