The Brain Injury – Welcome to my world

ct-scanIt feels very surreal talking about this subject; but I decided today was the day. I have put off the posting on this topic since I first started blogging a couple of years ago. In matter of fact I started a blog dedicated to my illness and how it affects me on a daily basis but I subsequently dropped the idea after I found it so hard to deal with. It wasnt that I couldn’t think of anything to write, it was just too emotional writing about something that is so close to myself, Elaine and our family. A brain injury is something that affects everyone differently, and as no two people are the same then the same applies. I will be honest, but when I wrote this, I felt embarrassed and ashamed doing it; don’t ask me why because I don’t know. Please don’t be afraid to read on…. I won’t bite. Welcome to my world, and my life with a brain tumour.

Please note that these words are from my memory and not the opinion of others. If any of the dates or facts are slightly incorrect then please accept my apologies in advance

In 1982 I was a normal 14-year-old. I went to the local upper school, had a circle of friends and enjoyed art, football and most other sports. I was very active, very athletic and always considered myself friendly, helpful and social. I will never forget 1982. It was nearly as poignant as the following year 1983, but I or anyone else for that matter would never have believed what was to happen next.  More on that a little later. Back to 82, and I spent most of my spare time plane spotting at Leeds & Bradford Airport (Yeadon Airport) as it was known to the locals. You can read more about how this came about in my post Aviation..there is a connection somewhere.  This was the year Mark Thatcher got lost in the Sahara, the year that DeLorean Cars went in to receivership and the start of the battle for the Falklands. It was also the year that I met my childhood sweetheart Elaine.

Considering how much time I spent plane spotting it was no wonder that was the place we met. It all happened one Saturday afternoon in the airport terminal building, we just got chatting and ended up spending the whole afternoon together. We were young, 14 years old but since when has love had an age restriction. We spent many a happy time at the airport, sharing laughs and being happy. We were childhood sweethearts and it was cool. I can say from the bottom of my heart that I loved Elaine from the moment we met, we never had a crossed word, never argued or said something untoward about each other. We just had a great time, sharing sweets, stories and kisses. What wasnt aware to two teenagers here was the chemistry going on behind the scenes, the creation or making of something so special. Something so special in fact, that it would come back in to our lives years later and just re-kindle the flame that had been burning since 1982.

In the start of 1983 things changed for me. I had always been in the higher end of my classes and my grades were good; school reports were something I didn’t have to be afraid of. I loved art, design, photography and anything creative. I was all set up for my last two years at school, this was the new school year starting in September 1983. I was focussed on joining the Royal Air Force and wanted to go in to Air Traffic Control. Things were heading in the right direction and my first year at Hanson School had done me proud. When my mid-term report came out things didn’t follow suit.Things had taken a nose dive and my work had started to suffer. So much that my parents had to be made aware of the matter. I can only assume that they must have thought something was wrong at home or another problem was bothering me. I know why they thought this, it was just not like me. I had stopped going to the airport weeks before and Elaine and I had just not been in touch. We didn’t have mobile phones in those days and we never knew each others home phone numbers. She tells me now that she often wondered what had happened to me. It would be much later that she was give some bad news by a good friend of mine.By the time the Spring months arrived things had taken a nose dive. I can remember forgetting things that were so simple and taken for granted in our everyday lives. I used to have my tea and go to my bedroom only to return downstairs twenty minutes later and ask my mum what was for tea. I found myself sleeping more and more and letting my everyday tasks just pass me by. My homework took a nose dive too and instead of achieving my normal grades I started slipping out of the zone and sinking to the lower end of the class. My memory was just non-existent.

brain_cancer1The summer of 1983 was a good one in terms of weather only. The music that hit the charts consisted of  Every Breath You Take by the Police, Flashdance by Irene Cara, True by Spandau Ballet and China Girl by David Bowie. In the June or July we had the usual end of year events at school as well as a couple of educational trips. Health wise I just wasn’t right as I slept at every single opportunity. I wasnt aware of this, all I can remember is my mum trying to wake me up all the time. It was then that my parents took me to see my doctor. I was referred to see a specialist at St Luke’s Hospital in Bradford as my GP couldnt conduct any further tests and the tests he had already carried out had been inconclusive. In between this I went on the two trips with school. The first one was to the Lake District, the Langdale Pikes to be precise. My memories are quite vague but I do recall it was hot and what you might call a typical British summers day. As much as I attended the trip I know that I slept through a lot of it and I was physically sick a number of times too. One of the faint memories I have been walking home from school after being dropped off by the coach. I have no idea why I wasnt collected at the school by my parents, I don’t think that would have happened today. Between the date of two trips was the school sports day, I was entered to run the 1500m race and as I stated earlier I loved running and was keen on my athletics. I will never know to this day how I managed to achieve what I did, but the fact of the matter was… I did. I not only completed the 1500m but I managed to win it outright, by a clear 20m. The last week of school before the summer holidays then saw us heading to the Yorkshire Dales. It was one of those “educational” trips that were designed to make you understand theory of geography but out in the field. How did it go for me? Not well! I don’t remember any of it.

What happened next? Well, by this time my memories were just not being made. I have very little recollection at this stage except that we went on a small family holiday to the Cumbrian Coast, a little cottage in a small seaside village called Silecroft. The cottage was called Shore Meadow. Like I said, I recall very little about this holiday except that it was sunny and warm. I remember returning home and before I knew it I became an in-patient at St Luke’s Hospital in Bradford. I didn’t stay long here however I vaguely remember the time spent there; the ward had a very high ceiling and I remember been tested a lot. A few days later I was transferred to Pinderfields Hospital in Wakefield. This was because Pinderfields hosted the Neurosurgical department for West Yorkshire. Back in 1983 hospitals just didn’t have specialised departments for Neurosurgery, Pinderfields was the centre for West Yorkshire and the nearest one that had a brain scanner too.

When I arrived at Pinderfields, I am remember the transfer by ambulance, I was taken to Ward 3 to the left of the main entrance. I remember nothing after that. Not a sausage. Everything after this for a number of weeks is from what I have been told. I was to be operated on by Consultant Neuro Surgeon Mr David Price. The whole procedure was to last over 12 hours and would involve two operations. My parents had been invited in to a room and offered a drink whilst they heard the diagnosis from Mr Price and his entourage. I was diagnosed with a Pituitary Brain Tumour. They were then given a couple of options; the first was to open me up, perform a short amount of surgery, close me back up again and this would give me a short spell of life with no guarantee of a quality of life. The second was to open me up and insert a hydrocephalus shunt in the side of my head. This was to release the pressure of Cerebrospinal fluid (CSF). CSF is a clear colorless bodily fluid produced in the choroid plexus of the brain. It acts as a cushion or buffer for the cortex, providing a basic mechanical and immunological protection to the brain inside the skull and serves a vital function in cerebral autoregulation of cerebral blood flow. The CSF occupies the subarachnoid space (the space between the arachnoid mater and the pia mater) and the ventricular system around and inside the brain and spinal cord. It constitutes the content of the ventricles, cisterns, and sulci of the brain, as well as the central canal of the spinal cord. (Data from Wikipedia). This was to be followed by a second operation called a Craniotomy to either remove all or part of the tumour. In the end, there was no removal. It was too difficult without causing too much damage and once again threatening my life. The surgeons opted to clip the blood supply to the tumour using a surgical clip.

The next 12 hours must have been like life in hell for my parents, my brother and sister. They were informed by telephone that the surgery had gone well and as always, only time would tell. As I have stated a few times in this post, there is a lot that I don’t remember. One thing that is quite vivid is Ward 3 in the Neuro Department. There were only 4 or 6 beds in a Ward. This was probably like the Intensive Care Unit. I seemed to spend weeks in here but it was probably a lot shorter. I recall spending my days listening to the radio. It wasnt my personal radio, but the one that the nurses had on all day. Radio 1 was my choice back in those days, the line up for the day used to be 07:00 Mike Read (Breakfast Show), 09:00 Simon Bates (including Our Tune & the golden hour) 12:00 Mike Smith and finally 14:00 Steve Wright in the Afternoon. Listening to Steve Wright in the afternoon was my favourite time of the day, and it still is now. I can remember hearing Mr Angry from Purley shouting his mouth off…I also remember the hallo Birds saying “hallo, hallo, hallo” but I cant find any trace on the www of this; suggestions anyone?

I pulled through and got better. Before I knew it I was allowed to sit up in bed. I always remember the two Asian doctors that used to come around the ward mid-morning. They always asked me the same question.. “Any pains in your head young man?”….as much as it hurt, it wasnt as bad as post-operation. I really hadn’t a clue what was going on. I obviously knew something had happened, something bad, but I had no idea until it was explained to me. I am unsure how long it was before I was allowed to get out of bed. I do remember that time very well. Two nurses came to see me with a physiotherapist  too, I was asked to sit on the edge of the bed and grab hold of  a walking frame. Without going into too much detail I eventually go there, it may have taken a while but I did it. I was on a concoction of drugs and medication as well as painkillers orally and intravenously. My balance was questionable at the time and my head was very numb but the high risk consequences of the surgery in the first place had been avoided. I returned home a couple of weeks later where my real recuperation would begin.

One of the things that was never brought to my attention at the time was how the surgery would affect me in my later life. Simply because no one knew. It only came to light recently by asking questions. Questions that were not avoided all those years ago, but merely put to bed because no one knew the answers.  Who would have known the life span of the shunt? or the tubes that accompany it through my body. These have all disintegrated and I am assured that the shunt is now not functioning properly and its a high possibility that my body is doing some of the work but no one can tell without opening me up. Something that doesn’t seem to be an option at the moment. Pain can be suppressed by medicine, anxiety can be quashed by tablets and a little help from doctors but no one can take away the memories of the trauma and how it has steered my life against the flow of the stream. Back in 1983, there was very therapy and support available for patients who had suffered trauma like this and it when I look back it felt like I was a small fish let loose in a huge lake. It isn’t until you realise you need something and it becomes apparent that you were never offered it before that you realise that we have learned a lot through time in medicine and how much those times have changed.

I hold no regret about what happened to me, only thanks to the surgeons, nurses and all the staff at Pinderfields General Hospital for saving my life. The survival rate of patients with brain tumours in 1983 were very low and I obviously was one of the lucky ones. Thanks to my parents for visiting me everyday and racking up thousands of miles doing so. I don’t know to this day how my dad managed to work and travel and still find time to sleep.

So here I am, 30 years later and as much as things are better than they were in 83, they are not as good as they were 10 years ago. I still wake every morning and go to bed each night; I live each day the only way I know how…to the full. As for Elaine, the girl I met in 1982. I am so proud to say she is now my beautiful wife and we are as happy as we were all those years ago. She puts up with me moaning and complaining, she is there to give me help when I need medication and she is the light of my life, for that I can never thank her enough; thanks that she would never accept in the first place. Thank you for reading.

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  1. Thank you for sharing your story with us Mark. Not one ‘Why me?’ comment and only praise for those that have taken part in your care and for them that continue to love and support you. May you long continue enjoying life and love lift you up where you belong…….x

  2. Thanks for sharing this, a really interesting read that offers a fantastic insight to what you have been through 🙂

  3. Thank you for your kind words Jules & Lee

  4. As one of your friends at that time, I still regret not being aware until after your operation. I do remember your braveness and strangely the fun we seemed to have when I would drop in after school. You became my best friend and no-one is more delighted that you are spending your life with your childhood sweetheart. You are a very brave and exceptional man Mark and I am so proud of you

  5. There is a particular quiet courage about the ‘been there, done that’ brigade where brain injury and TBI are concerned…. I know that intimately and see it daily through my son and others. Thank you for sharing your story.

  6. Wow – I just had a chat with you on the phone & saw your intro on Twitter. I asked you the question ‘are you ok’ and you sent me this. I feel honoured to read your story, thankful of your survival and continued battle – you are quite..well…inspiring Mark. Your atmospheric photography and zest for life leave me a bit speechless and I just hope that sharing your story means a lot to you as I am fascinated by reading it. Thank you for agreeing to my little project and now I understand it’s not just for commercial gain. Good for you (let’s do this!) 😉

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