Catrin’s Story

‘’Number 13 definitely turned out to be unlucky for me – I was diagnosed with a meningioma brain tumour on our 13th wedding anniversary.

Surgery has left me severely sight impaired and with balance issues – I often feel very dizzy walking any distance and suffer with extreme fatigue which means I regularly need to nap. I had to give up my driving licence and some days I can only get around on a mobility scooter which isn’t what I imagined doing aged 46, as I am now. In the spring of 2011 I went along to a routine eye test at the opticians. They spotted raised nerves at the back of my eye and gave me a letter and told me to see my GP.

I had no symptoms, but was referred to a neurologist within two weeks, who thought it was a spinal fluid issue. Before a lumbar puncture, they did an MRI to rule anything else out.

After the MRI when I got a phone call the same day asking me to come back to hospital on the Sunday for an MRI with contrast followed by an appointment with the consultant on the Monday. I completely fell apart. I knew they must have found something dreadful as nothing in the NHS moves that fast otherwise.

The consultant broke the news that I had a tumour bigger than a tangerine inside my brain. It absolutely floored me, particularly as I had been walking around with absolutely no neurological symptoms. A week later I had surgery.

During a nine hour craniotomy, surgeons tried, but failed to get all of the tumour out from the occipital lobe at the back of my brain. It was too risky for them to attempt to remove any more than they did.

Since surgery, my life has changed dramatically. I’d always worked and was studying to become an SEN teacher.

As I can’t work anymore, we have gone from being a two salary family to having to rely on just my husband’s. We had to downsize our house. Luckily we’ve moved to a street filled with wonderfully supportive, and fun, neighbours. This has been particularly important over the past 18 months of the pandemic, as I had to spend much time isolating at home.

The effect of my diagnosis on my family has been immense. Daisy, now at uni in Manchester, and seems to deal with it better, but Dylan, who is autistic and is about to start his A Levels, has found it really tough.
I am blessed to have incredible family support. My parents live close by and do huge amounts for me and I rely such a lot on my wonderful husband, Lindsay. It has been very tough on him, but he is always so amazing. I would be lost without him. Never have the words: ‘In sickness and in health’ been more tested than over the past 10 years.

My prognosis is uncertain – my consultant told me that the tumour will grow again – she hasn’t known anyone with my type of brain tumour where it hasn’t – so I have to go for regular MRI scans to check it is stable or whether I need more surgery and/or treatment. Every year around the scan it feels like time bomb waiting to go off “will this be the year’’.”