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My Story...

In October 2008 I suffered neck pain after having completed the Great South Run. That continued until January 2009, when I arranged to have an MRI scan. I paid privately for the scan, so when the doctor asked to see me following the scan I thought he was just providing a high level of service. I did not for one moment expect there to be anything wrong. He took me in to a side room and asked me about my symptoms. I felt confused because I could not understand why he wanted to know what symptoms I had because he was surely going to tell me that everything was fine. He then said that he was 'sorry'. I recall feeling even more confused because I could not understand why this stranger was 'sorry'. It was dawning that I was about to receive some bad news. He told me that the scan showed that my spinal cord was swollen and that meant that I had a growth in my spinal cord, on my spinal cord or in my brain. I was completely shocked but asked the obvious question...'What are you telling me? Am I going to see my children grow up?'. Inside I was hoping he was going to say, 'sure, it isn't really serious...', but he then told me that he, 'could not say'. He said that I would have to have an operation within a week, that it was a major operation and that I would be off work for four to six months. He said there was a risk that I would be paralysed by the operation. I was initially calm but when the doctor left the room, the tears began to flow. I had taken half a days leave that day and had told my wife that I would call her later to let her know how the scan went. During the journey back to my office, I rang my wife. I was thinking, 'how the heck do I explain this to her?'. When she picked up the phone I tried to be brave but I just couldn't speak. She thought it was a bad line and couldn't understand why I wasn't speaking. After many deep breaths I managed to explain the basics to her. That was the start of what can only be termed a life changing experience.

A week after the scan I saw a Neurosurgeon. It transpired that I had an intramedullary ependymoma between C4 and T2, high in my neck. That is a benign tumour inside the spinal cord itself. The tumour was slow growing but would eventually kill me if it was not removed. There was also a cyst above the tumour which was growing towards my brain stem. He said that there was a million to one chance of suffering one of these tumours so it was like the reverse of winning the lottery. He explained that that the  operation carried such a high risk of paralysis that it would be better not to operate but to review the position in six months time. In the face of that advice, I simply had to get on with life. However, between that point and the operation in October 2009 I was haunted by the uncertainty and became extremely anxious about the future.

In the early days I had to do a lot of internet surfing to educate myself about the condition. I needed to know what the real prognosis was; was I really going to be paralysed or was the surgeon just being risk averse. I discovered a website forum called spinalcordtumour.org which was run by an amazing lady called Carole Levine. She had suffered an identical tumour 20 years beforehand and had set up the website to provide information and support to fellow suffers. By reading the stories on the site I realised that the tumour was unlikely to kill me but it was highly likely that I would suffer some damage if I had the operation. That was an enormous comfort to me. I was also able to contact Carole and she put me in touch with a lady called Sara who had also had the same tumour in the same location. I was able to talk through the operation with her and she gave me lots of really great advice.

In August 2009, I suddenly developed the sensation of having a cold face (like air conditioning blowing on my face). A couple of weeks after that I had a bout of hiccups for one and a half hours. I hadn't had hiccups since childhood. Between mid August and mid September the hiccups became more frequent. By coincidence I had my six month check up in mid September 2009 and I then met the Neurosurgeon's registrar. She advised me against having the operation because of the risk of paralysis. She advised that as my children were still young it would be better to wait until they were a couple of years older so that if I was paralysed they would be able to help my wife (look after me and themselves). Having learned from the website I felt confident that all would be well and I told the surgeon that I felt that I should have the operation whilst I was well. She then booked the operation in for 8th November 2009 (so I could have half term week with my children in case it did not go well!). She followed the consultation by writing to me to confirm our discussion. The letter read, 'You have been warned that you might wake up from the operation with no function whatsoever and ventilator dependent'. She had also asked me in the consultation whether, if I was paralysed, I wanted to be woken up. As you can imagine, the lead up to the operation was really quite stressful!

On 18th Octber 2009, I attended a meeting with the members of the spinal cord tumour forum. I noticed at the meeting that I was struggling to swallow. A couple of days later I rang the surgeon to ask if that was anything to worry about. Then, having tried to delay the operation for the previous eight months she asked me what I was doing the next day! The cyst was now pressing against my brain stem and she said the operation could not wait any longer. The hiccups had also developed to the point where I was hiccupping every 2 seconds and I was suffering severe acid reflux. I could only sleep with the aid of valium, although that did not stop the hiccups.

I wanted to get my work settled before leaving bearing in mind that I would not be coming back for a while, so the operation actually took place on 29th October 2009. The very worst point was when I had to say good bye to my family not knowing whether...(you can imagine). Ironically, in order to cope I decided to view the operation as a really positive thing. Firstly, it marked the end of the tumour. Secondly, it would be interesting to experience a general anathstetic. I fell asleep and the next thing I recall was waking up! My family on the other hand endured 4 hrs of torture. When the surgeon called my wife to tell her that the operation had gone well, it was the first time she allowed herself to cry.

By the fact that I am able to write this account of my story, you can tell that the operation was a complete success. Being a rather determined individual I managed to walk three days after the operation and went home two days later. It took a further four months for me to recover sufficiently to return to work. The operation did affect my legs and I had to work hard to learn to walk properly again.

I was determined to recover my fitness and so I started running again. In October 2012 I completed the Great South Run. It was where the story started and I felt that by showing the world that I could do what I had done before the operation that it was possible to survive and recover.

Now the challenge of completing the Brighton Marathon 2013 is, I hope, another beacon of hope to other sufferers. I had never completed a marathon before the operation. I hope that by completing the marathon I can prove that the world need not end when you suffer a spinal cord tumour. In fact you can achieve things that you could not achieve before. 

I feel that raising money for a relevant charity is a really important part of the event. The existence of spinalcordtumour.org.uk was an absolute godsend thoughout the trauma of events. The point is this, you never know what may happen to you in the future. Charitble organisations provide a vital service but you must not take their existence for granted. Don't assume that everyone else will donate because they might not and then they may dissapear. Carole Levine not only gave her own money to create the forum, but she set it up and has run it for many years. It is only my opinion, but giving some money is really quite easy compared to what she has done for others. 

I really hope you will be motivated by my story to give what you can.

Please note that the Brain and Spine Foundation is a linked charitable organisation which carries a link to spinalcordtumour.org.uk Carole has request that I raise funds for them and I am doing so to thank her for her incredible contribution to my life.

Thank you,

Adrian