03/08/2026
Hello all.
I wasnt sure whether to say anything to the group yet or not. But its one less thing running around in my mind if I do.
So, many of you have noticed ive lost weight in the last year and I have lost 20kg.
One or 2 kindly commented on my big belly too.
Some of you know this already.
I was diagnosed with a form of blood cancer 19 years ago called essential thrombocythemia. My bone marrow made too many platelets. So I had a risk of heart attack and stroke and so always needed to be hydrated and look after myself. I stopped partying and smoking and things had been relatively normal apart from getting tired easier.
I also have a low Von Wilbrand factor, which means my platelet quality is poor, risking bleeding.
Over time they were both problems but also balanced each other out.
About a year ago I became more tired, lacking energy and muscle disappeared and my once peachy butt now needs a bra.
After doing a cat sit in June, the cat kept making biscuits on my stomach. It was very uncomfortable and I realised my spleen was enlarged.
I went to A&E.
They confirmed an enlarged spleen and liver and high white cell count.
Next day more blood, ultrasound and bone marrow biopsy and on Wednesday it was confirmed that my thrombocythemia is now myelofibrosis.
So a scar tissue in the bone marrow is preventing blood cells being made and my liver and spleen have been working overtime to catch up and gotten enlarged. They've pushed on my stomach and stopped me feeling hungry.
So.
Im waiting for medication to reduce my spleen and im hoping to get on a new medical trial in valencia which involves 1 day a month there and taking meds and completing a daily app. I dont know how that will make me feel.
If I cant get on the trial (please send possitive thoughts I do) i will need a bone marrow transplant.
This will mean 2 months in hospital, chemo, and the donor marrow replacing the diseased one.
I'll have no immune system and cant even change the cat litter.
So. I dont know when the walks will start up again after summer and im still trying to get my head around it all.
Ive had lots of support, but know being far away in simat de la valldigna means getting help will be harder.
Fingers crossed this new trail is possible and it helps.
Ive been a carer for many years and ive supported people pass home to spirit.
Cancer is always a scary word to hear and i know there will be good and bad days.
Im here on my own so my friends are very important.
The only thing im really worried about is the care of my cat and watering the garden.
So possitive vibes please and fingers crossed ill be like a mountain goat in no time.
Thank you. Xx
