Following her prompt diagnosis with a non-malignant brain tumour in early 2017, Natasha is having to focus on the short term future, weighing up the pros and cons of brain surgery and trying to live the life she wanted before diagnosis.

At the end of February 2017 I had my first ever symptom – what I now know to be a seizure.

I was in bed at 8am, woke up, felt cramp all over my body, was unable to move and then fell unconscious for several seconds. My partner called 999 but I regained consciousness during the call, so he was referred to NHS 111, who told us to go to A&E. I was checked over at A&E and sent home as the tests all came back normal.

Understanding her symptoms

Later that week I saw my GP as a precaution, who suspected I may have had a pseudo-seizure and referred me to a neurologist. The NHS neurology appointment was arranged for May, so my parents suggested I use our family medical insurance. I arranged an appointment at Queens Square for the following week with a neurological consultant recommended by one of my parents’ friends.

I went alone as there was no obvious cause for concern at this stage. When I met the consultant he did not seem worried either. He suggested I had simply woken up with bad cramp and had a panic attack, but sent me for an EEG and MRI anyway. I was told I would probably not need to return to see him. I had the tests, was called back in for another MRI with tracer, and then was summoned to see the consultant again.

I still didn’t think anything was wrong, but mum insisted she come with me just in case. At the appointment I was shown the scan with an obvious shadowy patch on one side. It was a lot to take in but I kept calm and took everything in as facts without processing what that really meant for me and my life.

Seeing an expert

The consultant I was seeing was not an expert in my type of tumour, but, in a step which I still think was excellent, had pre-empted that I might want to see an expert in low grade gliomas and had arranged for my current consultant to see me half an hour later. He confirmed the diagnosis, prescribed Keppra and suggested I go on watch and wait.

I had a functional MRI scan and consultation 3 months later, and another 6 months later had a follow up MRI. I am currently awaiting the results. I have had 2 focal seizures in the last 6 months but each one has been less severe.

I understand that I have the option for surgery at any point, but that it is not recommended at this stage as the risks outweigh the benefits to my quality of life. For now I am OK with that as I want to feel as normal as possible for as long as possible, although I am starting to wonder about what my options are and how each one could impact my life longer term.

Looking forward

I try not to think about the long term as I easily find myself getting bogged down with ‘what ifs’ which can feel overbearing. I stay clear of any information on prognosis.

Instead, I am trying to live in the now and take advantage of the relatively good quality of life I have. I still have the same dreams – a successful career, children, to make a difference and see the world – but I know in the back of my mind that when I reach each stage of life, achieving these things is likely to be more complicated.

Just before diagnosis I mentioned to a close friend that I felt I could see where my life was headed and that was reassuring, but I’ve lost that sense of certainty now.

I have plans to travel for 3 months next year with my partner, which is something I have wanted to do for a while. My diagnosis means I have new things to consider, like medication, insurance, the activities we chose to do and the pace at which we do them, but it feels like if I let my tumour get in the way of doing what I want now then I might as well give up.

Talking to love

The impact of my diagnosis on my relationships is complex and more difficult to capture in words. Telling people about my diagnosis was and still is a big hurdle to overcome.

I dread the questions ‘how are you?’ or ‘what’s news?’ as saying ‘fine’ feels like lying but the truth is way too heavy to explain in some situations. I feel like it would be easier if I had something like diabetes or even regular epilepsy.

The phrase ‘brain tumour’ comes loaded with preconceptions and it feels awkward for me to explain all the nuances involved in having a low grade form. I have now told most of my friends, but I don’t always fee

l as comfortable sharing as I would like to. This is despite the fact I have only experienced positive things when I do talk to people about it.

I am slowly learning to open up more, to let people who care for me share in my difficulties, and to ask for help when I need it.

Natasha’s story features in our recently published report: The story behind the data – non-malignant brain tumours (NMBTs). By sharing her story, Natasha 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.