Skip to content
BACK to Stories

My Brain Tumour Journey

Published on January 29, 2015 in Share Your Story

My Brain Tumour Journey

Lee

In October 2006, I had a seizure whilst at work. Shortly after this I started suffering terrible headaches, had shooting pains in my eyes, and kept getting strange smells, which wasn’t me. The only way to stop the pain was to push my head really hard into a pillow. I was often violently sick and did not know why all of this was happening. Due to the seizure I had to hand in my driving licence, which I know isn’t the end of the world, but still very disappointing.

I went to my then GP, who had a look in a book and said he did not know what it was and prescribed headache tablets for migraines. These tablets did nothing, so in September 2007; I went to see an optician. He said he had found something behind my eye and booked an appointment with the eye clinic at Coventry Hospital on the Monday morning. They did all their tests and said they had found a brain tumour. As I had not had anything to eat, I asked if I could go home to get something, but unfortunately or fortunately in this my case they said I would have to stay in hospital.

On the Thursday I had brain surgery, which lasted approximately seven hours. I was told that I had a grade three brain tumour, which had started hemorrhaging as it had been left to grow, probably since my seizure at work a year earlier. Due to the surgery and the scar tissue that was now there I developed epilepsy, which I have to take tablets for every day. I underwent six weeks of radiotherapy. This made me feel very tired and lose a lot of weight due to the loss of appetite. I also lost my hair, which made me look even uglier than I normally do! I had to have regular check-ups with consultant and MRI scans every six months.

Due to the brain tumour I met up with a lady called Lisa Jones, who also had a brain tumour, so it was good to talk to someone who was going through the same thing. She was not so lucky and passed away due to her tumour. She was a lovely young lady who had the rest of her life in front of her. I hope all the money raised can help prevent this in the future.

In 2012, one of my MRI scans showed that my tumour had started to grow back. My professor and consultant advised me that a biopsy would be needed to see what type of tumour it was now. The biopsy showed that the tumour was a higher risk and brain surgery would be required again. This took place in October 2012, and I now have to have chemotherapy for the rest of my life, but it keeps me alive. Again I have lost my driving licence, although the DVLA said I cannot drive for two years after my surgery on October 12, but it took them until April this year to take it off me, very annoying, especially after getting a new car!

My latest MRI scan showed that the tumour has started growing for a third time. I have been put on another chemotherapy, which I have been on before and put me back in hospital. I have been told that more surgery would do more harm than good. I am currently looking into other options to remove or shrink my tumour.


Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.

Stay Informed & Connected