One year on from diagnosis...

After a somewhat rocky start to 2018, I remember sitting in the room with the senior consultant. The monitor was on, and I remember feeling sick as he said, "When we did your MRI this morning, we found this...".

You didn't need to be a neurosurgeon to know that the white, golf ball sized blob at the side of my brain shouldn't have been there. I didn't know what it was, whether it was benign it not, what would happen next. I had to wait whilst the consultant spoke with the DVLA to check I could still drive.

MRI of a cystic acoustic neuroma.

He told me it was a Vestibular Schwannoma, sometimes referred to as an Acoustic Neuroma. It was growing on my hearing and balance nerve and untypically it was growing inwards, towards my brain rather than out towards my ear canal. This explained why I felt unbalanced. I discovered at a later appointment, that the tumour was cystic and causing some compression of my brainstem. I attribute this to the reason why within a few weeks of my diagnosis, I had forgotten how to write, had high blood pressure, and a resting pulse that was no longer in the healthy range of 50-60bpm, but now a minimum of 108, an extremely heightened sense of smell and incredible fatigue, as my body struggled to do "business as usual".


After suffering a haemorrhage 3 weeks before surgery, I 'forgot' how to write.

My life, as I knew it, was flipped upside in an instant. Of all the things I suspected could've been wrong with me those last few months, shingles, Lyme disease, Lupus, MS - I had been told I had a vitamin D deficiency - a brain tumour wasn't anywhere on the list. I think he was trying to bring me a little comfort when he said that there was nothing I could have done to prevent getting this.

The usual advice he would give patients to eat healthily, lose weight, stop smoking and drinking, exercise more, well none of that applied. Later, I would wonder why I bothered looking after myself, it clearly hadn't done me any good. But as a military friend had pointed out, I should think again. I later began to realise that whilst it hadn't prevented this from happening, my fitness - and mindset - would be instrumental in my recovery.

Neil (my husband and best friend) arrived minutes later, and after a chat with another consultant he drove me home. We were both stunned, worried and upset. I was angry this had happened to me, and ashamed that I was about to ruin things for everyone when I told them. I didn't want to tell them, and what would I tell them? How do you tell them...? In the days that followed, I googled myself to death several times. I was 1 in 100,000. Why me?


After a traumatic few months, too many appointments to count, intratympanic gentamicin injections into my ear, lots of vomiting and nausea, and even being 'accused' of being drunk in the middle of the day, as I staggered around shops, and in and out of my car, I had brain surgery in May to remove my tumour.

A few hours after an 8 hour surgery, on the HDU. I felt like someone had drilled into my head!

I had significant balance challenges as well as some facial paralysis and visual impairment following my surgery. As soon as I was able, I sat in bed trying to teach myself to write again, a challenge made even more difficult by having my hand and arm full of IV lines. I got myself tangled up causing the machines keeping me pumped full of fluid and anti sickness medication to bleep away! I entered into the biggest physical fight and mental battle that I had yet to face in life. There were, and still are many moments when I wonder if I will ever win this battle, fighting against having to accept a 'new normal' that survivors often speak of, and that even now I am unwilling to accept.