Together we will find a cure Donate
Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
Claire was diagnosed with a brain tumour in 2008 after she was taken ill Camp Bastion, Afghanistan, and immediately evacuated back to the UK. Claire lives with her husband Phil and their daughter Ellen.
To say I was surprised to wake up in a Birmingham Hospital is a bit on an understatement. It seemed like only moments earlier, I had been running along quite happily, chatting to colleagues during a charity fun-run at Camp Bastion. Apparently I had collapsed with a seizure while running and the duty doctor (a member of the Terretorial Arm, but also an NHS neurosurgeon) was concerned about the results of my CT scan. This showed a possible intracranial bleed and, as a result, I was immediately sedated and evacuated home on a C-17 transport aircraft.
Having been fit and healthy all my life and with no other symptoms it came as quite a shock to learn that an MRI scan at the Queen Elizabeth Hospital in Birmingham revealed a tangerine-sized tumour in my right frontal lobe. A few days later I underwent a de-bulking operation to remove some of it. The tumour was subsequently diagnosed as a grade II oligodendroglioma.
Once I had recovered from the surgery, I was more concerned about the impact it was having on my family, not just for their sake, but also to help me avoid thinking about my own predicament. Inevitably, I soon started asking myself “why me?” and quickly became an “oligo-google” specialist. Although an excellent source of information, the internet can be quite depressing, particularly when the subject of life expectancy pops onto the screen. I soon realised such research was not healthy and decided that I must get on with life.
In the summer of 2009, I transferred my care to Southampton General Hospital and soon afterwards the tumour started to show signs of growth and was re-classified as a possible grade III anaplastic oligodendroglioma. I was put on a course of chemotherapy (Temozolamide) for twelve months and although the side effects were tiredness and nausea, the tumour started to reduce in size, albeit not as much as I had hoped.
I have developed epilepsy as a result of the tumour and so can no longer drive and my memory has also suffered. Thankfully I have had no seizures since March 2010 as they are now well-controlled and, even though running can bring them on, I have continued my passion for running and still take part in 10K’s and half-marathons to raise money for other brain tumour sufferers.
Since my diagnosis, the past two years have been a whirlwind of emotions, not just for me, but also for my family. I cannot imagine how they coped with having to meet me at 3am in intensive care. Since then, the physical and emotional support I’ve received from my family, friends and work colleagues has been quite incredible, as well as additional solace from the Hammer Out support group in Southampton. To meet others in a similar predicament has been extremely beneficial and I have total admiration for all the wonderful people at Hammer Out with whom I have had contact. I wish to thank all of my family, friends, colleagues and Hammer Out supporters for their patience, support and understanding over the past few years.