“I was 40 when I was diagnosed with my Acoustic Neuroma. It was 3.5cm in diameter. I had been experiencing quite a few symptoms for months; like most men, I ignored them for as long as I could.
My hearing was slightly off on the right side. My doctors said there was nothing wrong. Then my balance was affected.
My surgery was on 22nd May 2017, the same day as the Manchester Arena bombing. I woke up in recovery, where there was a flurry of activity, as doctors and nurses treated the injured and tried to find high dependency beds for the unexpected influx of patients.
I told staff to go and treat those who had been brought in, to let them have my bed, but they said I was still their priority. I was impressed with their compassion and professionalism, as medical staff who were off duty, or on leave, came back into the hospital to help.
Surgery to remove the tumour had been successful, but it had left me with grade 6 facial palsy. I also lost my hearing and balance nerve on my right side.
At first, I didn’t think I needed help, but when I eventually got back to my work as a joiner, the only job I’d had since leaving school, I began to realise just how much I did.
Fatigue has been one of the biggest issues I’ve had to deal with since. It impacted my ability to work and I found it a real challenge. I struggle to make it through the day without a power nap.
“Feeling part of a community is really important to me.”
I have also had issues with my eye. Because it could no longer close on its own, due to the damage caused by surgery, I had to have platinum weights implanted into my eyelid. It is constantly dry, and so my life is dictated to by an alarm on my phone, which reminds me to put drops in it every 2 hours. If I don’t do this, it can become very painful, with a risk of developing corneal ulcers.
Recovery has been far from easy. Often, people with Acoustic Neuromas are dismissed as they are classed as a benign, or low grade brain tumour. However, something that is as life-changing as this is far from harmless.
Single sided hearing loss is another challenge we are faced with after this surgery. I have had further surgery to have a Bone Anchored Hearing Aid (BAHA) device fitted.
I now have a titanium post screwed into my skull and a sound processor which clips onto it. This picks up sound on my deaf side and conducts it through the bone of my skull to the cochlear nerve on my unaffected side.
It helps a little, but there are still many situations when this can be more of a hindrance. Trying to hear in noisy environments is very difficult, and this also impacts on my fatigue levels. I often suffer from a ‘noise hangover’ after being somewhere really loud! This can cause many people like me to become what might appear as antisocial, but we consider it as self preservation!
Recently, I have found myself caring for my elderly parents, especially my dad who is not in good health. Trying to juggle this with managing fatigue levels on a daily basis is a real challenge at times.
Feeling part of a community is massively important to me. It is reassuring to be able to speak to others who are experiencing the same difficulties, as well as meeting those who inspire me. For this reason, I am really looking forward to being part of the Beyond Recovery team.
This project is really important, as it has given me something to focus on other than the 2 hourly phone alarm and the day-to-day struggles that life presents these days. I cannot begin to describe just what it means to me to be a part of something like this. I have never taken on anything like this before.
Getting to the summit really will be life-changing, and a really special experience for everyone.”
In 2024, I will be taking a group of brain tumour survivors, to Toubkal,
If you can support the Beyond Recovery project, you will be helping to provide people like Andrew with a life-changing opportunity that will give focus and help him to reinvent his “new normal”.
To make a donation, however small, please visit the link below.
www.gofundme.com/f/beyond-recovery
Thank you for your support.