In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
After suffering from a seizure while driving to work, 40-year-old Rory Burke underwent numerous tests. Results revealed he had been living with a brain tumour and the next step would be an awake craniotomy. As well as having to deal with side effects of the tumour, Rory had to cope with the breakdown of his marriage, moving home, being unable to work and undergoing further treatment.
“The diagnosis wasn’t the only news that changed my life that week. After meeting with the doctor to discuss my results I found out my marriage was over and my wife and our six-year-old son left our family home. I was also trying to make sense of how I could work, as I was banned from driving due to epilepsy and the seizures. It really was a tough time for me, especially not having a partner there for support.”
Here Rory tells his story…
It was February 2012 when I blacked out one morning while driving from North Lincolnshire to Leeds. I only realised what had happened when I came round and discovered I had mounted the pavement. Had I fallen asleep? Or had I suffered a heart attack? I felt disorientated, but decided to turn the car around and drive home, as I knew something wasn’t quite right. I remember that drive home, I felt thankful that it had happened in a quiet village, as five minutes later I would have been on the motorway and the consequences could have been extremely dire.
When I got home it happened again, but this time I experienced what could only be described as fitting and an ambulance was called. When they arrived, I was in and out of consciousness and the paramedics struggled to control the convulsions. They took me to A&E. It wasn’t until a few days later that I woke up, alone and confused in intensive care.
The doctors came to speak to me and said they had carried out a CT scan and had found something they believed was a brain tumour. They also explained that the fitting I had experienced and the black out in the car were in fact seizures. They told me a neurologist at the Royal Infirmary Hospital in Hull would need to run some more tests to get a formal diagnosis.
I’m a very black and white type of person and the news that I had a tumour did shock me a little, but my main emotion was acceptance. I really just tried to stay positive. Not everyone who is diagnosed with a brain tumour has options, so when the doctors went through the different treatments available to me I felt lucky that there was something that could be done.
The diagnosis wasn’t the only news that changed my life that week. After meeting with the doctor to discuss my results I found out my marriage was over and my wife and our six-year-old son left our family home. I was also trying to make sense of how I could work, as I was banned from driving due to epilepsy and the seizures. It really was a tough time for me, especially not having a partner there for support.
My parents lived in Surrey and I didn’t want to have them driving back and forth up to Leeds to see me. They tried to support me as best as they could and so did my brother Ronan but in reality, I ended up spending a lot of time on my own, trying to deal with everything.
After more tests over the coming weeks the neurologist felt that surgery would be the best option. As the tumour was close to my motor strip, they advised that I would need to be conscious during the craniotomy operation as this way they could test my movement to ensure only diseased tissue was being removed.
The first operation was scheduled for March 2012, though this was stopped mid-way through as I suffered a full-blown seizure during the operation and was admitted to intensive care to recover. The surgery was rescheduled in April and as I stood there in my gown ready to go in, it was cancelled as there was no spare bed in intensive care. The third time we were successful and the surgery went ahead. During the operation I experienced around 15 small seizures as I lay there awake on the table. They asked me questions and checking if I could feel and move parts of my body. It was a very weird experience. The surgery went well and they were able to remove about 80% of the tumour, which was about the size of a golf ball.
Waking up from the operation, alone and a bit drowsy from the drugs wasn’t a nice experience but I was pleased it was over. It immediately dawned on me that I couldn’t move my left arm and I remember being really scared. The nurses tried to reassure me that physio would be the next step and to try and rest. I was also offered chemotherapy and radiotherapy, but as it wasn’t essential chose to hold off, as I had already so much emotionally and physically to deal with.
I found physio tough and frustrating and I really tried to push myself, as I believed the more effort I put in the better my arm would get. Six years later my arm is still weak but you have to keep fighting the battle and challenge yourself to overcome hurdles.
A few years later in January 2016 a routine CT scan showed the tiny bit of tumour was beginning to grow again and this time I opted to have chemotherapy and radiotherapy. I was also put on a combination of drugs to help with the seizures, but they still happened sporadically.
I chose not to go back to work and focus my energy on myself and my mental and physical wellbeing. Like so many people nowadays, I sought help from outside my family, not only in helping me deal with the diagnosis and treatment, but also with the other things being thrown at me that I didn’t feel in control of. I would say to anyone that has been diagnosed to make sure that they have someone to talk to and if you need additional external support, don’t be afraid to ask.
Although I live with a tumour every day I try not to let it worry me and rule my life. I joined a local walking club and even took part in a cycling challenge for the charity Brain Tumour Research when I was undergoing chemotherapy. It was important for me to move on from the tumour and help fund research into the disease. I now also sponsor a player from the London Irish RFC, a club my family has had long associations with. The Brain Tumour Research logo is on their website and in every home match day programme. It makes me feel good to help raise awareness of a disease that affects so many people each year.
Though I’ve had many personal challenges to deal with during my brain tumour journey I feel positive about the future and am enjoying every moment as it comes.
Brain tumours are indiscriminate; they can affect anyone, at any age, at any time. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
If you have been inspired by Rory’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via https://www.braintumourresearch.org/legacy
Together we will find a cure.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.