me, my health and i - a harsh introduction

A doctor once told me to write about myself and everything that has happened to me and how I cope with it, well I though a book may be a good idea but I find it hard to write a letter never mind a book. So, "a blog" i thought, and here's my opportunity. You see what the doctor meant is that, if I wrote about the experiences of my condition that I have gone through it may help not only me but others that are having long term health problems like mine or any illness to be honest.

Whisht! lads, haad yor gobs, an' aa'll tell ye aall an awful story, ....when I was 4 years old I was diagnosed with a brain tumour ( medulloblastoma ) and i was 30/70 to survive - yet here I am writing this some 35 years on. The treatment after the successful operation was both radiotherapy and chemotherapy. These treatments were directed at the back of the head, more or less the base of the skull and top of the neck and with my young age the radiation also affected the front side of the neck because the barrier is not yet formed to protect it. The radiotherapy also had other affects as have become aware of this year.

I began to experience seizures that affected me in my arms going numb and my mouth going numb to the effect of I couldn't speak, this was as scary experience and lasted for approximately 20 minutes with my right arm and hand taking the best part of ten minutes to get back to normal after I had regained normality in my left hand side and regained my ability to speak. I believed it was a TIA as had a similar episode around 13, two more seizures occurred within a few months.

One harrowing event involving a seizure causing me to fall down an escalator of a metro station. As the escalator was not on at the time I started to walk down it, the steps were steep and I got more than half way down when vision blurred and lost my footing and fell down the rest of the way, about 11 steps, no I don't recall any numbness but I couldn't speak after the even for around 5 minutes. Luckily there were some helpful and concerned people who came to get me up and off to one side.

Now the one thing that sits with me, angrily, is that "why was the escalator off?" it was put back on after my accident, why not sooner? Indeed I believe I wouldn't be that injured if were on as normal, I wouldn't have to walk down and when the seizure occurred I would have been stood still.

I was taken to the RVI A&E after being cared for by the ambulance crew, who did a darn sight better than A&E who seemed to ignore what I told them about my history and the event and after patching me up made out that I was another drunken accident case. Of course the blood results belied their report because they showed no alcohol, more to the case is that they did not do any scan of my head given my history and that I came in with a serious head injury.

Later on at the beginning of august I was visiting my parents and another seizure occurred, I remember falling on the floor in the bedroom out of the bed for some reason but I don't remember anything else until I found myself downstairs in the living room sitting on the sofa with my parents standing over me.

At Sunderland A&E I had a CT scan which they had found the signs of brain tumour on, I was readily rushed through to the RVI in Newcastle and was operated on the next day to remove a meningioma tumour. The operation was a success although I had a seizure straight after the operation and the operation had an affect on my speech because of it location in the left frontal lobe.

Approximately eight weeks on now since the operation and I am more or less back normal life with my speech improved to a level I can hold conversation, still struggling from day to day with words or phrases. When in hospital it was horrific and immensely frustrating experience not being able speak or eat, having to point out and spell words out on a printed out alphabet especially because I think everyone is used the qwerty keyboard layout to find the letter they want rather than just an alphabet. But not only that, people not being patient enough and trying to guess and finish what you are trying to say as well causes some frustration and anger, I had to apologise to one nurse because I got a little angry, I had got a little speech back at that point.

But getting back not only your strength but balance and ultimately confidence to do things like walk about, wash yourself and what is thought of normal is down to pure determination and persistence to come back from not only the operation but the fear of the seizures and accidents that can happen, had happened, because of them. Because of my recent experience I have found that there are people, groups and organisations geared and ready to help you get back this confidence and strength like Maggies, The Brain Tumour Charity, The Three Tumours, CABIS and Momentum Skills.