Sunday, June 18, 2023

today is bitter sweet

›
Here it isn't father's day. But it is in the UK.  And I know I would have loved to see him. Talk to him, probably get frustrated by ...
Saturday, June 17, 2023

fellow VHLer on Instagram

›
 I feel and affinity with a complete stranger, and have been happy to see her comment on my posts. She looks to be my age, think she has kid...
Friday, June 02, 2023

I'm a worrier and a warrior

›
I have been on a hen do, with some lovely women, each of us have been through trials and tribulations. None of us are coming out of this uns...
Saturday, May 06, 2023

telling my story

›
 I had a fascinating chat with a colleague, we discussed all things kidney.  I will be pleased when I get back into the scan flow - I am pus...
Thursday, May 04, 2023

VHL awareness month

›
And the month that my dad died in.  I'm missing knowing he's alive and I'm feeling so deeply sad.  Right now my life is very uns...
Tuesday, April 25, 2023

VHL - is it rare?

›
 My pal's brother has had to have emergency surgery - hemangioblastoma in his cerebellum. They have suggested he gets tested for VHL. Sm...
Saturday, April 15, 2023

triggered

›
This morning as I waited for my husband to get ready so we could go to breakfast he was listening to a podcast and a female surgeon was talk...
Friday, April 07, 2023

I miss him

›
I'm really missing my dad. This week I've dreamt of him often. I've woken up crying and I've sensed that he's not here. ...

You weren't my aunty but you were

›
 I didn't even know she existed until my brother stayed with her and my mum's cousin Tim. But I didn't register that, a couple o...
Thursday, March 30, 2023

Passion fruit

›
 I can leave Malawi content as I have harvested some passion fruit.  This little moment matters to me, not leaving something undone.  I don...
Saturday, March 18, 2023

Searching for what should make me happy

›
 I am increasingly relying on fate and not sensible planning. I have applied for a maternity cover - the Headteacher was very nice but I got...
Thursday, March 16, 2023

adults think they know everything

›
When I was about 18 I went to a odd hotel in Great Yarmouth. It was too see if I deserved an arts sponsorship to get to arts school.  I didn...
Sunday, March 05, 2023

home is where the heart is

›
 I am home, in the Warm Heart of Africa. It certainly felt odd. My heart is split and that might never change. I understand why I'm feel...
Saturday, February 25, 2023

The magic cure isn't as magic as I thought

›
 The last few days I've seen posts from people who have not had the miracle cure from the drug that they and the rest of us were expecti...
Friday, February 24, 2023

last chance - well it's not but it feels like it

›
When the fates allow it I will look back and use these last few weeks as a lesson in keeping on. I feel so utterly supported by so many peop...
Tuesday, February 21, 2023

harder than I thought

›
 I've been very tearful today and finally had a good cry.  Simply put, although I know it's the right thing to do for so many reason...
Saturday, February 11, 2023

hydrocortison

›
 Humph I need more than I brought with me and it's very annoying. In Malawi I can just go and buy it. I don't think this is necessar...
Monday, February 06, 2023

flying home

›
I keep having to remind myself this is real. It doesn't feel it. Like a crap prank. I don't know if I believe this is happening and ...
Saturday, January 28, 2023

Genetic lesson in ethics

›
 There are moments in your life that hit harder than others and then, like any other kind of grief, it tends to fade or at least hits less o...
Friday, January 20, 2023

whiskey

›
I'm watching a zombie apocalypse series. I don't like them. I don't like to think how easily so many people you know and probabl...