Claire was diagnosed with a grapefruit-sized meningioma. Her story is a pertinent example of the life-changing impact of a non-malignant brain tumour, and the resilience shown by those that receive the diagnosis.

There had to be some explanation for my constant migraines, hands that trembled and an increasing everyday struggle to find words. I constantly forgot things like work assignments, and I would faint flat out on the floor at random times of the day and in public places. I would suddenly be completely blind for a few moments, as though my eyes were tight shut when in fact they were wide open. My symptoms were dramatic, and they were taking their toll. I was scared and depressed.

‘I knew something was wrong’

My GP put it down to stress but I knew something was wrong and went to an optician, as the moments of blindness were getting worse. They immediately said there was severe pressure behind my eyes and sent me straight to hospital. I was given scans and then referred to Atkinson Morley’s Neurology Dept – a brain tumour, the size of a grapefruit, had showed up on the scan. The consultant booked me in for an urgent operation to remove an intraventricular meningioma, two days later.

It was incredible that overnight I had gone from being an independent woman living life at full tilt to someone who was very ill and depending on others.

I had lost my speech, couldn’t find even the most straightforward words, I was partially blind, very weak on one side, and often didn’t even know where I was. And even with the tumour removed; I was going to have to take seizure medication for life due to internal scarring from the operation. And with all that, there was also the constant overwhelming feeling of fatigue and getting confused easily.

I had been tired before, but this was like nothing I had ever felt. This was turbocharged tiredness. It was like trying to walk through treacle, my arms and legs felt heavy and even just getting up from a chair felt like a major effort.

I now have hyperacusis and tinnitus, spasms in my legs and neck and terrible anxiety. I need to take things at my own pace now.

Looking to the future

My dreams to be a successful business woman in London with a 9–6 job are no longer possible. I can’t be relied on to do my job well. It is sad, but it is true. But that has not stopped me finding other ways to achieve my goals. Yes, I can’t earn the money I once did but, I have now have my own projects that I can do in my own time.

I have lost some friends because we have lost touch, as our lives do not cross paths like they used to but I have found new friends within the brain tumour community. Since my diagnosis I have written a book, and have a second one coming out at the end of this year. I did a book tour around the UK and visited many charities to share my story with other brain tumour patients. I set up and presented a volunteer radio show for nearly 4yrs that was very successful. I didn’t do it alone but I did do it.

Even with my fumbling words and memory loss I find my way. I still need support and medication, counselling and have attended several clinics in hospitals for issues I still suffer from. But, I don’t say still for long. I cry when I find it too much and then I pick myself up and carry on.

Claire’s story features in our recently published report: The story behind the data – non-malignant brain tumours (NMBTs). By sharing her story, Claire has helped us to shed light on the lack of public understanding of the impact that these tumours have, and the need for better, more appropriately stratified support for those with a non-malignant brain tumour.