In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
University student James was diagnosed with a low-grade brain tumour after he started to have nocturnal seizures. He has managed to continue his studies in mechanical engineering and will run the London Marathon 2018 for Brain Tumour Research.
“The London Marathon has always been number one on my bucket list and as there is no better time than now I am going to be taking part this year. I will be running for the charity Brain Tumour Research. For obvious reasons it is a charity very close to my heart and, as well as raising money, I hope to raise awareness of the startling statistics around this disease.”
James tells his story:
I was at uni and living in a shared flat when I was first taken ill. As I felt a strange sensation taking over my body, leaving me paralysed and completely unable to call for help. The next thing I was aware of was waking up the next morning. I had bitten my tongue badly and was confused about what had happened. The campus health centre suggested it was an episode of sleep paralysis but, three months later, in May 2016, it happened again.
I have always been a big Leicester City fan and, strange as it may seem, both of these episodes happened around match days – the first time was the day we lost to Arsenal and the second, the day we won the league which was massive.
This time, after encouragement from my mum, I went to a walk-in health centre where I was advised that I could have epilepsy and I would need a scan. Fortunately I had access to private healthcare through my dad’s work and my parents drove up to Sheffield, where I was studying mechanical engineering, and took me back to our family home in Leicester.
Scans revealed I had a dysembryoplastic neuroepithelial tumour (DNET) which is slow-growing and low-grade. It has taken a while to get my medication right and over the months after my diagnosis I was having seizures three or four times a week, always at night, and as a consequence I was unable to drive for 12 months.
Things were further complicated as I contracted lymphangitis, an inflammation of the lymphatic system, in my legs which meant more hospital visits and intravenous antibiotics.
I managed to go 12 months without a full seizure until I was taken ill, this time at home. This time, I manager to shout out before I fully lost consciousness and my parents found me shaking and banging my head uncontrollably against the wardrobe next to my bed. I was taken by ambulance to Leicester Royal Infirmary.
I am now on the anti-seizure medication levetiracetam which seemed to suit me much better than Lamotrigine which I was on previously. The London Marathon has always been number one on my bucket list and as there is no better time than now I am going to be taking part this year. I will be running for the charity Brain Tumour Research. For obvious reasons it is a charity very close to my heart and, as well as raising money, I hope to raise awareness of the startling statistics around this disease.
Brain tumours 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. It is vital that more money is invested in research which will help people like me.
Without an invasive biopsy there is no way of knowing 100% if my tumour is non-cancerous but the doctors are as sure as they can be. If it grows, it may require surgical intervention in the future but, for now, I will continue to have annual MRI scans and hope that it remains stable.
I am now in my third year at uni and, if necessary, I am able to have additional time for assignments and for revision in the run-up to exams in order to reduce the stress which brings on my seizures. The diagnosis has been difficult for us all psychologically although I would much rather it be happening to me than to anyone else in my family.
My brain tumour is not really something I have talked about other than to my close friends and family but I am choosing to share it now in the hope that it will give other people hope.
Brain tumours 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 James’s story and would like to make a donation to Brain Tumour Research please go to https://www.justgiving.com/fundraising/jameswardle 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.