On the 13 August 2022 my life as I knew it changed completely. Most of you reading this will know that I had been complaining of headaches, odd visual symptoms my GP told me were migraine auras without pain, smelling things that weren’t there (which I blamed on long covid) and the odd episodes of vertigo. In April I had told my GP I had convinced myself I had a brain tumour pressing on my optic nerves and I wanted them to prove me wrong. They more or less dismissed me, probably thinking I was a hypochondriac, but agreed to refer me to a neurologist, I later found out they referred me for a routine appointment with the line ‘this lady is suffering with typical migraine.’ That was nothing like what I had explained  

By June my symptoms had worsened and my GP said there was nothing they could do to speed up my appointment and I could have some codeine for the pain. In August I was having fairly excruciating episodes of pain which I know now was the pressure in my brain. One evening I looked in the mirror at my eyes as I took my contacts out and realised I could no longer see my pupils as round, they were moving kidney bean shapes and if I closed one eye I discovered I was seeing bumps in lines that weren’t there. I realised something was really wrong with my eyes and in desperation went to my optician who took one look at my massively inflamed optic nerves and sent me straight to hospital to work out the cause. 

Some hours passed with lots of tests and some theories on what might be the problem but ultimately they wanted to rule out anything sinister with a CT scan. And so after hours waiting at 10pm a female doctor entered my cubicle. She asked if I wanted someone with me and that’s when I knew this wasn’t going to be good news. I told her my husband was home with our four children and she better just tell me because I knew now it wasn’t going to be good. Then she told me that they had made an ‘unexpected finding’ on my CT. She explained there was a lesion.  I asked if she meant a tumour, she said yes. I asked if that meant cancer and she said not necessarily. She explained that brain tumours can be benign but that no one can really know that until it has been taken out. I’ve since learned that it is far better to describe a meningioma as ‘non cancerous’ rather than benign because to most people ‘benign’ translates as harmless but there is nothing harmless about something growing in your brain and nothing harmless about a surgeon cutting into your brain to remove it. I asked her how big it was. She said 5.1 by 4.1cm, the size of a lime, causing what they termed ‘critical pressure’ in my brain. She looked concerned that I was taking it so well, I said it was obviously shocking but that maybe I had just prepared myself because I had been saying for four months I thought I had a brain tumour and that at least I now knew I knew my body. 

I was admitted straight away and operated on five days later.  The surgery was a great success, it was all removed and it was reported as a grade 1 meningioma with some features approaching a 2. Everyone told me this was the best possible outcome. Physically I recovered very well although it took a while to be as active as I had been and it was difficult to look ‘fine’ but not to mentally feel it.  Coming to terms with what had happened took a lot more time. 

I have some level of PTSD, I am easily angered and irritated and overwhelmed by loud noises, too many noises and too many people all touching me at once. In busy places like shopping centres I became like a rabbit in the headlights when with the children, I couldn’t focus on making sure they were all ok and with me and not running off because I was so busy making sure that I was ok and holding it together. On days like that I felt sorry for Andy because he had essentially gained another child when we were all out together. But these are side effects that have improved and in time I think they will all fade away. 

They say it takes a year for your brain to fully recover from surgery done to it, my MRI in February 2023 at 6 months post surgery showed I still had a significant empty space in my brain and that might always be there. 

At 12 months post surgery my brain had learnt to navigate round that empty space and re learn how to file away my temporary memories and how to say the simpler word for something when all I could find was the harder to understand word. 

Between 12 and 15 months I was still struggling with some of my mental health, so some things take longer than a year, but it’s a year extra I’ve had, every year after August 2022 will be a year extra that I wasn’t guaranteed and that the extremely skilled surgeons gave me back, and that is what makes each year special. 

So this year  at 18 months post surgery I have my next check up MRI on February 1st, the same day I start this challenge.  I got extra years, some people don’t and more research needs to be done to find out why and to look for cures. Help me support this brilliant charity to help give other people extra years. 

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 since records began in 2002.Brain Tumour Research is determined to change this.We are the only national charity in the UK focused on finding a cure for all types of brain tumours through campaigning to increase the national investment in brain tumour research to £35 million per year, while fundraising to create a network of seven sustainable Brain Tumour Research Centres of Excellenc