I was diagnosed with a cavernous malformation in my right frontal/temporal lobes in February 2009. My first bleed gave rise to a focal epileptic seizure down my left side which lasted for approximately 7 hours; I had never had any similar type of epileptic seizure previously and so I was very scared, shocked and worried. I was not fully diagnosed until I had had a further 2 seizures in the space of a few weeks. When I was told about my condition, very little was explained to me, or at least, I don’t recall being told much detail. This was understandable given the potential seriousness of my condition and my neurologist wanting to break things to me slowly, but I remember leaving the hospital numb from what I had heard and having absolutely no means of getting more information or support with what I had to deal with. I had been told that my cavernoma was the size of a small tangerine, that there potentially was an increasing risk of seizure with time, and most upsetting was the fact that I was no longer able to drive a car (which my career depended upon), and yet I had no-one to follow up any of these questions with until my next neurologist appointment which was some weeks away.
I heard about CAUK through a friend of a friend who had also been diagnosed with a cavernoma but in a different part of her brain and with very different symptoms. CAUK became my lifeline. Because my friend’s friend had a very different cavernoma, she was not able to help with all the questions and worries I had but CAUK was. I craved detail and reliable information on what I was facing and CAUK was the only place where I got the information I needed. Although very little was known about cavernomas at that time and still is, there was no question that CAUK provided the only means for me to access information and support on my condition; my neurologist did not have the time to give me and couldn’t provide me with the insight of living with epilepsy and headaches that others similarly diagnosed could. My family also benefited significantly from the help that CAUK was able to provide; through reading the information leaflets that were available online and which I was sent, but also through reading other people’s stories. What was of most help was talking to others similarly affected or being subject to the same treatment; people who I was put in touch with through CAUK and who themselves would have not had any support were it not for CAUK. The best example of this was the night before my awake craniotomy. I had prepared myself as best I could for the 8 hour surgery, but through CAUK I was able to speak to another woman who had undergone this most serious and horrifying procedure. It was thanks to this telephone call that I was able to really know what was going to happen to me before, during and after the operation. Little things like being prepared for the number of people in the room when you’re lying there with your head open really helped.
Thankfully my operation was a complete success and I am now back working in my previous vocation, driving a car, free of my cavernoma and all symptoms and with a growing family. Wanting to give something back to CAUK so that the charity can continue to help others, I have fundraised for CAUK since November 2009 and my operation. Two nights before my awake craniotomy, I hosted a big fundraising event with various games and activities and which culminated in me and 11 of my friends shaving our heads. Although I had to shave my head for the operation, my 11 friends didn’t and to show their support for me and for CAUK they agreed to join me. That night we raised approximately £5000 for CAUK as well as my friends and my family’s spirits before my operation.
As I was fortunate to recover from my condition and having previously been a keen runner, on the anniversary of my operation I ran the New York marathon and raised a further £1000 approx for CAUK. This certainly was not an easy thing to do so soon after the operation but as before, CAUK continued to provide me with support and inspiration so that I was able to complete this further mammoth task.
I was also keen to give my time to help CAUK and so supported the charity as a trustee for approximately 2 years. Crucially, I now regularly speak to others who themselves have been recently diagnosed with a similar cavernoma or who are to undergo the same operation to provide them with support and answer what questions I can. Speaking to these individuals continues to help me to process what I went through and reminds me of how lucky I am now to be cavernoma free.