Friday, May 31, 2024

you left the chat

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 2/3rds that I've been this way. Long may it continue. 
I set about sharing the good news. Only fair to speak of the joy when it comes. 
I noticed that in the WhatsApp group a range of people had left. Maybe some have changed their number. Maybe though, and I suspect this for some, they thought it was over. 
Ha! 
If only hey, if only VHL could be over. Not only is it never over until it's really over, but for some it continues in their children. My poor dad had that, knowing it was in me too. I thankfully do not have that. 
I am happy everyday that I don't see it continue that way. 
It's just in me. 

Tuesday, May 28, 2024

inspiring

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 chose me. 

My godfather has often remarked about the way my dad inspired him and I'm part of that. I replied this time it's one for in front of the other. 

And then at breakfast the day after my uncles funeral my cousin told me I inspired them all. 

It's lovely and strange to be seen that way. I think we all just get on with it. 

I was listening to a podcast with a man who has terminal cancer. He quite rightly said to live each day as your last is exhausting and doesn't last long before you really can't be arsed to. And that's so very true, I don't get to do that. 
My good pal and I laughed that she had witnessed me - very jokingly - told my daughter she couldn't kick me off the sofa (which she was literally trying to do) because I had cancer. My pal found this so funny because she's never heard or known me to use it. Let alone in such a frivolous way. 

I think that's what I inspire... Just getting on with life and although I always have something and could use it more - I will mostly aim to be happy and get on. 

Sunday, May 12, 2024

The time flies

 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 holding, creating a welcome distraction from why you're in. 

The thoughts otherwise wander all over, some might be able to mediate, I talk myself out of the worry and fear, the reason you're there called into sharp focus. The habitual prayers I say to ward off the potential growth. That's blind faith isn't it, that through that prayer perhaps somehow they shrink or disappeared. At other times I shift out the memories of surgery and difficult recovery days. 

Convincing myself I can taste the contrast fluid, the instruction to drink lots for the next few days to flush it out. Oh if only we could eat or drink something that would flush out VHL. 

Just how much kidney can I live with, just how many surgeries can this body, forever aging, take? Should I be doing more? 

And then home. To wait and do my very best to ignore it all. 

Saturday, May 04, 2024

scan coming up

 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 but for me that that. Just another one rolling around. 

Just a time to wait

Just a time to worry

Just a time 

Just a

Just