I was diagnosed with the above which a rather rare and incurable bone marrow disease, which although being treated with the drug Azacitidine to hopefully prevent its progress to Acute Myloid Luekemia it will cease having effect at anytime.
I live a very restricted lifestyle now, I have to avoid crowds, public transport and certain foods as I am easily prone to infection due to my compromised immune system.
I am 71, male and divorced some years and live alone.
It's rather like living on death row, I feel so alone and scared. I attend the chemo unit in my local hospital for 6 days in every 28. It sounds rather peculiar but this is the only place I feel safe and secure. My treatment is proceeding well but how long it will continue to is unknown.
I try not to dwell on my predicament but my eventual fate is always lurking in the back of my mind. Even in sleep there is no escape as I have the most terrible nightmares often waking in a panic attack.
I have 5 children who obviously are concerned but of course the have their own busy lives, so contact is limited to the occasional text or phone call.
Most of the people I considered friends have made themselves scarce once they knew I was ill.
(sad)
CKD stage 3 - no support only leaflets.
What was your favourite board game as a child?
