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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.
Richard Preston was diagnosed with a glioblastoma multiforme (GBM) brain tumour which was discovered after he began suffering persistent headaches. He underwent surgery to remove a tumour the size of a large apricot which was located behind his left eye. Radiotherapy and chemotherapy followed. In March 2014, Richard, 45, married Wendy, his partner of 25 years.
In October 2013 I started suffering from persistent headaches. After about a week-and-a-half we called the doctor and were advised to visit the opticians. I was recommended to get some reading glasses to combat deterioration in my eyesight which was put down to age. But the headaches persisted and I could feel something was not right in the back of my left eye.
On the 6th November I saw the optician again and he found something in the back of my left eye that he was worried about so an appointment was made for me that afternoon at the hospital. They agreed there was cause for concern and I was booked in for a CT scan the next day, Thursday.
That was when a growth, the size of a large apricot, was discovered behind my left eye. Queen Alexandra Hospital in Portsmouth transferred me to the neurological unit at Southampton that evening. After a more detailed scan on Friday, we were told it was likely to be cancer and surgery was going to be my best option. We were told that once the tumour was removed it would be analysed and we would know more. I had started to faint occasionally so the decision was an easy one. I had been given two choices: have a biopsy to determine what the growth was or remove it straight away. I made the decision that they should take out as much as they could. I wasn’t worried at that point. Even when I was lying on the bathroom floor because I had fainted, I was embarrassed and annoyed with myself more than anything.
On 11th November I had surgery lasting five-and-a-half hours. Fortunately, the tumour came out with no serious implications to my movement or speech. The operation was high-risk but the tumour was in a relatively easy place for them to get to. If it had been at the back of my head, it would have been a different story.
I had 37 staples in my head and still have three titanium screws in my skull. But my eyesight is still perfect and I don’t think I have lost any function although I’m not as quick as I was. Two weeks later the tumour was confirmed as a fast-acting glioblastoma (GBM) brain cancer. There are four categories of brain tumour and mine was the worst one, grade IV. It could have been in my head forever and something just accelerated the speed at which it grew. The doctor said “we have bad news – you now have only two to five years to live.” Because I don’t swear, I said “fluff.”
After my diagnosis and surgery I decided it was time to live. I had 11 months of chemotherapy and radiotherapy and we have had a lot of fun too. Three weeks after my radiotherapy finished, on 1st March 2014, Wendy and I got married. We went on a 24-night cruise around the Mediterranean seeing all the things we always said we would, taking in Venice, Dubrovnik, Istanbul, Athens, Florence, Naples, Corfu, Monte Carlo and Barcelona. This year we already have plans to do a volcano walk in Sicily, go on a cruise in the Baltic Sea and have some exciting experiences including clay pigeon shooting, cross bow shooting and an afternoon tea. There are all those places which we intended to visit and now we have a short timeline to do it in.
At the moment I am feeling really well and am off the chemo drugs. I see my consultant every three months but will only need blood tests or scans if I feel unwell. I have been told that if I remain well and seizure free for a year after my drug therapy, there is a chance I will be able to drive again so I’m hoping to be behind the wheel by October. I haven’t been able to drive since my diagnosis so this will be a really big milestone.
I am supporting Brain Tumour Research in raising awareness of this devastating disease because I hope the research they are funding will improve things for patients in the future.