“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.”

The Beyond Recovery Project is a not-for-profit community interest company which supports brain tumour survivors like Andrew.

It is funded entirely by donations and run by volunteers. Please support if you can, so that we can continue to provide this support to the brain tumour community.

www.gofundme.com/f/beyond-recovery

Thank you for your support.

“I was diagnosed with an Acoustic Neuroma brain tumour in September 2021, two days after my 48th birthday. It was 2.4cm in size and was pressing on my brain stem.

My journey started a few years before. I first noticed a change in my hearing, when listening to sounds through my right ear became distorted.  Voices sounded like a dalek.

Being a typical bloke, I ignored it for far too long. I eventually managed to see a doctor at the very start of lockdown and was then referred to the ENT (Ear Nose and Throat) team at Birmingham’s Queen Elizabeth Hospital.  

“Before all this started, I was fit and active.”

Because of Covid, I waited just over a year for an appointment. 54 weeks. I had my first MRI 2 weeks before. A medium sized tumour was discovered,  It was 2.4cm and right on the edge of needing either surgery, or radiotherapy.  

I had another MRI a few months later and the tumour had grown to 3.2cm.  It was compressing my brain stem and needed to come out quickly.  The bulk of my tumour was removed on the 4th Aug 2022.  

During this time,  I had completely lost hearing in my right ear, and my balance was severely affected; I couldn’t walk in a straight line and started using walking sticks to help me get around. 

Before all this started, I was fit and active. I competed in regional Taekwondo competitions, I trained a few times a week at a boxing gym,  and had run the Birmingham marathon a few times.  

The loss of balance and fatigue, had a big impact on my life.  I became sedentary. I started to pile on the weight, which in turn caused its own health issues.  

My road to recovery has been rocky to say the least. A few weeks after the surgery, I caught a horrible cold.  I normally get over these things quickly, but this one was horrible. It was even diagnosed as pneumonia by the doctor.  

My coughing caused a CSF leak, which was incredibly unpleasant and I needed another surgery in December 2022 to close off my ear and seal the CSF leak.  I never felt right after this, and in April 2023 I was re-admitted to hospital and treated for bacterial meningitis.

“My work, who had been incredibly supportive up to that point, decided to let me go.”

I was in hospital for 10 days. In the weeks that followed, my work, who had been incredibly supportive up to that point, decided to let me go.      

All this has had a profound effect on me, physically and emotionally. I’m just not capable of doing things I took for granted before. My family and friends have been incredibly supportive, but only other acoustic neuroma survivors, know what it’s like.  

It’s difficult for people to understand, as most people greet me with “Wow, you’re looking well.”  Little do they know the daily battle I am facing. Even though the bulk of the tumour has been removed, I still live under the shadow that it might start to grow again.  

Hearing and balance had to be sacrificed on my right side to get at the tumour, something that will affect me for the rest of my life.  

It’s now nearly a year since my initial operation. I’m starting to climb out of that sedentary rut that I find myself in.  Sara’s story, and others from the BANA community have been a real for inspiration for me.  Your body can learn to adapt to the new normal. I have never done anything like this trip before. If I can make the summit, it will prove to myself that I can do it, and maybe be an inspiration to others that they can do it too.  That would be amazing.  

I have a long way to go, but I’m feeling determined to get there.”

Written by Mark Ackroyd.

The Beyond Recovery Project is a not-for-profit community interest company which supports brain tumour survivors like Mark.

It is funded entirely by donations and run by volunteers. Please support if you can, so that we can continue to provide this support to the brain tumour community.

www.gofundme.com/f/beyond-recovery

On 1st October 2019, I stood on the summit of Jebel Toubkal, the highest mountain in North Africa. My journey didn’t begin there though; it started 506 days earlier, as I lay in a bed on a neuro high dependency unit, unable to walk and struggling to adapt to my new normal.

Almost a year and a half later, a good friend gave me the opportunity to trek to Toubkal, at a time when I was really struggling. Psychologically I was not in a good place. When I finally reached the summit, I felt totally overwhelmed and empowered. This experience gave me the strength to move forward in life and set myself even bigger challenges. Now I want to help others to do the same. To move forward beyond recovery.

In June 2024, the Beyond Recovery project will be taking a group of brain tumour survivors, who have been on the same journey as me, back to the Atlas mountains so that they too can experience what it’s like to overcome the mental and physical challenges that life has thrown our way.

Recovery can be an isolating place. You’re told, “You’re ok now, get back to normal.” But what does normal look like? Months earlier I received the news I had a brain tumour and needed life-changing surgery, now I need to go back to normal. But normal is very, very different and it can be lonely.

I didn’t know who I was, where I was going next or what my future looked like. I had to create a focus, and reinvent “normal”.

By supporting this deeply personal project, you will be making a massive difference to many whose lives have been turned upside down by a brain tumour diagnosis, helping to give them a focus, and the opportunity to push the limits of what they believe is possible.

This cannot happen without your help. Please make a donation if you can (every penny really will make a difference!) and be part of something amazing.

Thank you so much for your support.

Sara