About me 2: a bit more.

My name is Jonathan Day, born on 24 January 1970, in Portsmouth, England. I have no middle name. I asked my Dad why not once. He replied that he had never met anyone who liked their middle name. Fair enough, but sometimes I think I’d like one. James is nice.
Life, as it is for most, was fairly uneventful growing up. It is about waiting to begin, I suppose. It is about becoming you. I went to university in the autumn of 1989 to study Politics. I had hopes of becoming a Political journalist. There was this guy on BBC Television news called Tim Sebastian. He was my role model. Unfortunately it wasn’t to be. The summer of 1990 saw everything change.
To me it is a well known and fairly boring story but it might not be to you. I had a summer job in a perfume factory. Mostly women worked there and I had a hard time getting used to all the gossip. I didn’t like working there. One morning at the top of the stairs I fainted, fell down them, cut my back open and was carted off to hospital. The junior doctor at A and E was more concerned with why I had fainted rather than the stiches I needed in my back. I went home, secretly pleased I had a reason not to go to work.
Then the headaches began.
At first I thought it was the perfume at the factory, or the particularly unhealthy student lifestyle I was leading. As the summer progressed the headaches got worse. Some days they crippled me, I couldn’t move without severe pain. Other times they made me cry. The GP diagnosed stress. He told me to meet some of my friends, have a beer. I did. It made no difference. One of my university friends came to visit from London. ‘Just do everything right’, he said. I didn’t know what he meant. Eventually my GP sent me to see a specialist. Fate took a hand. The specialist had been my mother’s doctor thirty years ago. He agreed to see me in time for me to be able to return to university. It wasn’t to be. I had a CT scan done of my head. On mentioning I was returning to university the next day the agitated radiographer told me I couldn’t and arranged an emergency appointment with the consultant.
I had a lump at the back of my head, a brain tumor. I didn’t know at the time but there are a lot of different types of brain tumours. This one was called a haemangioblastoma. It was non-malignant and if you had to have a brain tumor then this was the one to have.
My mum had died of cancer when I was ten, so I had a brief concern it was somehow related. I was assured it wasn’t. University was postponed and instead I was admitted to hospital. They whipped the tumor out and it was then the real nightmare began.
On the scan they had also identified a second tumor, this one touching my brain stem. For whatever reason they didn’t discuss it with me but discharged me from hospital telling me to go live my life. Someone mentioned a condition called VHL but nothing major was made of it.
The following summer my headaches returned. I couldn’t believe it. I thought that was all over. I had spent the last year at University, had passed my finals with the satisfaction of a 2:1 and was considering to return and take up the challenge of a masters before tackling the world of journalism. For a second time this was not to be.
VHL is an acronym for the sinister sounding Von-Hipple Lindau Syndrome. It is classed as a familial cancer and although it is mostly nonmalignant it is however recurrent. There is no cure. It is a chronic and lifelong companion. Whether I admit it or not it closes down my life choices and controls what I do or don’t do. You can find out about it here: vhl.org.
We found out it had taken my mother, and her mother. Within years of my diagnosis it took my sister. I survive. Its resulted in my reliance on kidney dialysis, three times a week. It is from my hospital bed I do most of my blogging. It is difficult. The sessions are four hours long. After about 90 minutes I become a bit vague and confused so I have to get my writing done quickly, but I persevere and it does get done. I don’t know if anyone reads my blogs or not but it gives me a sense of purpose and there are many days when I need one. My medical history will only make for depressing reading so I wont go into detail. Suffice to say my hopes of becoming a Tim Sebastian journalist are long gone. But I blog and you are my audience.