Rory Burke’s had a grand-mal seizure out of the blue while driving. Subsequent to the crash Rory had an MRI scan, he was diagnosed with an Oligodendroglioma.
Here is Rory’s story:
How did you find out about your diagnosis?
It all started in February 2012. I passed out at the wheel while driving to work. At the time I had no idea what had happened, but fortunately, no one was hurt. I was just five minutes from the motorway so very blessed that I was not far from home.
I was taken to the hospital and looked over. I also had an MRI. It was there that they found I had a brain tumour. It was clear at that point that my crash was due to a grand-mal seizure.
I was then booked in to have an awake craniotomy to remove the tumour. The operation was not successful and I needed to have a second awake craniotomy. They were only able to remove part of the tumour as it is on my motor strip and too dangerous to remove fully.
I would go for MRI check-ups every 6 months and in 2016 the tumour started to grow again so I had radiotherapy in November/December then PCV chemotherapy in early 2017.
Now I am still on 6 monthly MRI and continued management of my epilepsy. Therefore, at this time, I still have a brain tumour and go for MRI checkups every six months to see it is not grown any further if it does I may need to have more treatment.
How are you feeling now about everything?
I have chronic fatigue. I am also on medication for seizures. I am taking Lacosamide; Keppra; Clonazepam; Sertraline, Fycompa to keep the seizures under control.
I have had slight balance issues. Weak left arm, my hand especially. I had a paralysed left arm which over the last 7 years worked to rehabilitate it which I have spent years rehabilitating that part.
What do you do now in your life?
I now focus on living a positive journey whatever that may be from day to day. I continue to work on my rehab and support Brain Tumour Research raising awareness and money for them.
I like to challenge my mind and body. I have raised funds by doing a number of things including ‘Ride A Bike’ challenge three times. I have also got my company involved with ‘Wear a Hat Day’.
What motivates you?
I am motivated by living a positive life to prove there is a path forward
What is the toughest challenge a survivor’s face?
Living with the unknown and the hidden symptoms
What is next on your agenda?
I don’t set agendas I live life as it comes.
“Now I help raise funds for Brain Tumour Research”
Any advice for people or loved ones that get daunting diagnoses?
Don’t look on the internet about brain tumours
Who is your personal hero or are your heroes?
They are two sets of people:
- The NHS and my team that have been involved in my journey.
- London Irish Rugby Club (Of course friends and family)
Tell us something about yourself that people probably didn’t know… anything?
I played against Argentina at rugby when I was younger at U18 age group for Middlesex.
Conclusion: Thank you for sharing your story. It is amazing you were ok after your grand-mal seizure while driving. May that Oligodendroglioma stays quiet forever.