About about me, this might help set background to where I might write from. part of my life a significant part of my life which is now private and feels like a past life is my child hood. Between the age of 7-17 and straggling into the year before and after I was a typical “sick kid”.
I have a rare tumorous condition finally diagnosed at Yorkhill Sick Childrens Hospital in Glasgow. The first time I visited I had no idea I would grow to call it “home”. After years of experimental treatment, pain, tears and fears. The inevitable happened. I say inevitable because I feared it from around 10 years old when I was old enough to realise the severity and nature of my condition. That the tumors had spread to my brain. In my head that literally meant Game Over. So I went from one of the sick but lucky I wasn’t dying children to the sick wont get better don’t know how long they have left children. I had crossed over the line. I think they refer to them now as “Rare” children.
I became very unwell and my memories after that point in my life are hazy and substituted by stories and photos. However I slowly stopped declining. I got better and eventually returned home. then had some tubes removed, then meds reduced and hey next thing you know I go to college, Then i went to university. Then I got a job and the rest as they say is history. My history. I had lived with the knowledge it was not distant history to me. I believed my tumors and the reason for my ill health remained. I was in short too scared to have anything followed up beyond the age of 16. And tumors don’t just disappear, prognosis don;t die people do. Until the tumor did disappear and I didn’t die. However last year for a minor health issue I decided to face my demon, confront it through an MRI camera lens (if they have lenses) and discovered I was tumor free.
I don’t want anyone to read this to believe they should not have treatment, they should have the treatment that feels best for them. I don’t want people to think I was brave, maybe I was when I was little but as an adult not so much. I hope though if anyone reading this is going through similar or have experienced similar they can feel a little bit less alone. For me I will write when I can about my work and my experiences in the hope of making sense of my life.