Brain Tumour Awareness Month - a personal experience

When you think of brain tumours you probably think of symptoms such as severe headaches but one of my main symptoms was actually blurred vision which developed gradually over months. I remember being in a meeting at work during the Summer and looking across the fairly large room and thinking the person speaking was a bit blurry and that I needed to get my eyes checked as I probably needed glasses. Then my busy work and home life took over and it was a few months later that I finally made that appointment. I had been to my doctors about severe headaches that I was getting every so often – these were lasting over 24 hours and painkillers weren’t helping – but without any further checks I was told it was hormonal. I just accepted what they said and didn’t think anything of it. Had I known at that time that changes in vision was a symptom of a brain tumour – coupled with the headaches I might have pushed to see someone else.

I finally booked an optician’s appointment in November; she immediately referred me to the Eye Casualty at St James’ Hospital and from there I was referred for an MRI after scans of my eyes showed nothing wrong with my actual eyes. I had to wait three weeks for an MRI and then another few days to get the results. After that things moved very quickly, I was told the scan had shown a cyst on my brain and I was booked in to see a neurologist a few days later. I saw my neurologist who told me I had a brain tumour which was sitting on my optic nerve which explained the vision problems; I’d be having surgery the next day. To say I was terrified is an understatement but luckily I didn't have too much time to worry before I was heading off to the operating theatre the next morning.

After the surgery, it was a long recovery with intermittent hospital appointments with endocrinology, ophthalmology, ENT, and neurology. I was also supported by occupational therapists, psychologists, physiotherapists, and counsellors. I quickly learned about all these areas of healthcare – some of which I’d never heard of before.

Let me break it down:

• Occupational therapist – a lovely women called Alex who listened to all my concerns and stresses and helped me work out how to manage the extreme fatigue I’d been left with. She also prepared me for my return to work and supported me as I returned to work. I couldn’t have got through it all without her.

• Psychologist – another lovely lady who I first saw the day after I was told my tumour had returned. She calmly helped me come up with a coping strategy which we wrote down and she reminded me I had survived this once so I could again.

• Physiotherapy – after taking a tumble down some steps when my brain wasn’t quite in sync with my actions, I was visited at home by a physio who assessed my mobility and gave me simple exercises to follow to get back to normal.

• Counsellor – after finding out in such a short time that I had a brain tumour and being operated on the next day, I obviously didn’t have time to process this. It was in the following months, I struggled to come to terms with what had happened and how it had affected me. I saw a great counsellor via Yorkshire’s Brain Tumour Charity who provided me with a chance to talk about it all and how I was feeling and provided me with coping strategies moving forward.

• Neurology – the one you would expect to be involved for brain tumours. Neurologists are specialist who treat diseases of the brain and spinal cord, peripheral nerves, and muscles. I have annual appointments with my neurosurgeon.

• Endocrinology - treats diseases related to problems with hormones. It turns out that your pituitary gland (which my tumour had been sitting on as well as my optic nerve) is in charge of making several essential hormones that your body needs. As a result of damage to my pituitary gland, I am now steroid dependent and must carry an emergency injection kit in case of an adrenal crisis (a medical emergency caused by a lack of cortisol).

• ENT – Ear, Nose and Throat department – I had endonasal surgery which meant they accessed my brain via my nose and my sinuses which involved removing some structure at the back of my nose and taking a skin graft from one nostril. This has left me with nasal problems, so I see ENT when I need to.

• Ophthalmology – ophthalmologists are doctors who care for patients with eye conditions. For the first three years after my brain tumour was discovered, I had regular eye tests but was then discharged from their care once they were satisfied my vision was ok.

When I was originally diagnosed, I had no idea just how many areas of healthcare I would be accessing in the following weeks, months, and years. All of this has given me a real insight into how important all these different roles are.

As for my brain tumour journey, I was unlucky, and my tumour returned just six months after my surgery - just as I was planning my return to work. I had further surgery to remove it and then suffered a cerebral spinal fluid leak (an escape of the fluid that surrounds the brain and spinal cord), which led to me contracting meningitis and I had to have two further surgeries to repair the leak – what I can quite honestly describe as a month from hell! The recovery this time was much longer and more complex.

However, my last surgery was in August 2019 and I returned to work in October 2020. I now have annual MRI scans followed by appointments with my neurosurgeon to check everything is as it should be, and so far (fingers crossed) it’s all ok.

I’ve been left with extreme fatigue, nasal problems, and a weakened immune system. I take a lot of tablets to keep me going and am steroid dependent for life, but I still count myself as one of the lucky ones. I’m back at work and managing my day-day-life. Some days are easier than others but as time goes on I learn how to manage it all better, and as they say what doesn't kill you makes you stronger!

The key thing is to know the symptoms and get help if you’re concerned. If I’d known about the main symptoms of a brain tumour, I might have got help quicker, and my personal advice if you have any change in your vision get it checked out by an optician, after all it was the optician that spotted there was something wrong and got me the help I needed.

Main symptoms:

• Headaches

• Changes in vision

• Seizures

• Nausea and dizziness

• Tiredness

• Loss of taste and smell

• Cognitive changes

• Communication problems

All these symptoms could be something else, but if you’re at all concerned get checked out. When I look back, I had four of these symptoms but put it down to being run down.

To get more information and support please visit The Brain Tumour Charity and Brain Tumour Research.

If you’re interested in looking at the healthcare courses that Leeds Beckett offers please visit https://www.leedsbeckett.ac.uk/school-of-health/ and https://www.leedsbeckett.ac.uk/school-of-humanities-and-social-sciences/