Have you been diagnosed with a brain tumour? Order your free information pack.

“I only remember talking to the anesthetist about ‘RuPaul’s Drag Race’.”

Tom Lewington, 26, from Bristol has praised the support from The Brain Tumour Charity as the only way he got through his shock diagnosis with a brain tumour.

He first began experiencing headaches, dizzy spells and pain behind his eyes, at the beginning of June this year. In a huge whirlwind, he went from being diagnosed to having emergency surgery to remove the tumour in just a matter of days.

Tom went to see his GP following advice from a nurse whilst he was at work as a police detention officer and he had a dizzy spell. The GP suggested that he saw an optician and, when the optician discovered that the back of Tom’s eyes were red and swollen, he was immediately sent to the eye clinic at Bristol Eye Hospital. Despite being told by the optician not to worry and that he probably needed some eye drops, Tom would soon find out that the swelling was a sign of pressure on his brain which could be being caused by a tumour.

This was unfortunately confirmed after Tom had various eye tests and a CT scan with contrast dye at the nearby Bristol Royal Infirmary. He was then transferred by ambulance to the neurology department at Southmead Hospital for treatment.

Tom said: “The optician checked my eyes and did seem to be in a bit of a panic. Yet, I went to the eye hospital thinking it was all straightforward and I didn’t suspect that anything was really wrong. I didn’t feel like I was in the right place when I was then sent to the ‘Majors’ department at the hospital. It all happened so quickly.

“You could have heard a pin drop when a neurosurgeon told me at 11.30pm that night that I had a brain tumour.

“I called my partner and we both got very teary as I told her that I would be having a biopsy and a drain placed into my skull to relieve the pressure. I thought that this could be the last conscious time that I speak to her.

“A weird memory which will stay with me forever was being wheeled to the operating theatre at 1am and talking to the anesthetist about BBC’s ‘RuPaul’s Drag Race’ because she had a badge from it on her lanyard. We chatted about the American series and the upcoming UK series. I said the badges were only available to winners of the UK series and she suggested I looked on Etsy for one just before they knocked me out.”

After further MRI scans, Tom had surgery two weeks later which successfully removed 95% of the tumour which was confirmed to be a Neurocytoma. He had a seizure following the operation, which is the only one he has had, although he now takes anti-seizure medication for which the dosage is being gradually reduced over time. After also spending some time in Intensive Care and also having another series of MRI scans, Tom was able to go back home on 23 June. He is now on a watch and wait treatment programme and he has MRI scans every six months to monitor his condition for any changes.

Tom said: “I was so thankful to get home that day in June – it was during the heatwave and so I had some very hot days in the hospital. I found out that my type of brain tumour is very rare. Not much is known about it. But, due to the size of my tumour, the doctors think it could have been growing for the last five years. That’s very scary to think about especially when, during that time, I was doing physically demanding jobs, I obtained a full HGV licence, worked for a haulage company and drive offenders in custody across the country.

“Since then, I have had good days and I have had bad days. I can’t drive now which you don’t realise is such a giant freedom until it is gone. The scans have been showing that the tumour hasn’t grown – and I will have this checked again in March with the next scan. I still get some pain and a few headaches but it’s nothing a painkiller can’t fix now.”

Tom has credited The Brain Tumour Charity with providing him with valuable help and support to get him through the ordeal he has experienced since his diagnosis.

He added: “The Brain Tumour Charity has helped me massively – especially the Facebook support groups. When you are diagnosed, you are all of a sudden thrown into a world which you know very little about and you are expected to just deal with it by yourself. The support groups provide you with a place to ask all of those questions and get answers from people who are going through the same thing. I was worried about MRI results, the DVLA and the pain in my head. You can also read other people’s posts and take comfort in how you are not alone.

“The BRIAN app is also fantastic – I find the daily check-ins and reminders you can set up for when you need to take medication or have appointments really helpful. Honestly, I don’t think I would have coped so well with all that has happened to me if it had not been for The Brain Tumour Charity.”

Been affected by a brain tumour?

Find out how our revolutionary app BRIAN could help you.