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.
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".
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.
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.
There are not enough words to describe what those close to me - especially Neil, close friends, deployed military friends (whose messages were a constant source of motivation that seemed to arrive when I needed them most!), medical staff, and fellow AN survivors mean to me! They went to battle with me. They crawled in that deep, dark hole with me. They were light and hope. They gave me strength and encouragement in my lows and celebrated with me, each high along the way; those first independent steps, each tingle in my cheek and mouth indicating nerve activity and a slim chance that my face may still recover and I may regain feeling.
The crazy journey of my brain tumour, led me down the path to sharing my story with others on a similar journey - from where I began to where I now find myself.
I know each individual is at a different place ion their own path and I share this in the hope that it will help encourage at least one person.
So, seize on adversity as an opportunity. See barriers as blessings. Use challenges as opportunities to reach new heights. Believe in no limits. And keep sharing your journeys because in doing so, we pay forward our warrior spirit and never give up attitudes to one person at a time!!!
In 2019 and beyond, I hope to help raise awareness of Acoustic Neuroma, this rare and cruel tumour, by continuing to share my experiences and setting myself more challenges that will push me to overcome some of the physical difficulties I have been left with since my surgery; you see, what appear to be simple tasks are not always so easy for me now, despite how I may look. I have long mountainous walks planned, even though I still struggle with fatigue, and I need to overcome the nausea I feel when I'm cycling on uneven trails. I will get there eventually.
Whilst I hope to to make a big impact, this intruder has knocked my confidence, at times leaving me outside my comfort zone, scared by my own thoughts, the "what ifs" not to mention the guilt and upset I feel when I hear of those who've been less fortunate in their recoveries. Also, the fear of facing situations for the first time since surgery and even the anxiety that a planned social event will bring, due to the issues I now face trying to hear in noisy environments. I also fear having to go through this again if another tumour ever grew, and the prospect of age related hearing loss in my good ear now terrifies me.
I aim to fight to have faith over fear, and champion that cause, to show that we can achieve anything we set our minds to!!
I didn't recover only to go about my life; I hope that I can use my journey to help others walk through their own, just as others helped me walk through mine.
I hope that sharing my experiences with people, will show them just what they can achieve when they have courage and faith in their own capabilities, and I aim to to be an example that with a little help from your friends and those close to you, you really can achieve what is seemingly impossible. I will never ever give up.