Sue’s Story

“In September 2021, I was diagnosed with an Acoustic Neuroma brain tumour after having a series of symptoms present themselves during COVID.  Looking back, I can now see that my ‘companion’ was letting me know he was there, my balance was off, I was feeling more tired and dizzy.  I didn’t put them together… blamed it on over training at the gym (I was a regular 4/5 x a week), being busy with 2 boys and just a busy lifestyle, especially when COVID hit.

I then started to experience problems swallowing and hearing on my right side was reducing.  I ignored it for a while, but when I was experiencing pain down my neck and not swallowing properly was keeping me awake, I decided to take the plunge and speak to my doctor.

A suspected ear infection and 3 doses of paracetamol later, I was referred to ENT at Southampton General Hospital.  Significant hearing loss was confirmed and they recommended me for an MRI, this was how they found my tumour.  It was 3.5cm. In addition to this, I had Hydrocephalus (a build-up of fluid on the brain – twice the amount there should have been).  If left untreated, this can be fatal.

Things moved quickly, and it took 4 days from initial diagnosis to seeing a neuro surgeon.  Everything was explained and their first priority was to deal with the Hydrocephalus. 

My first operation to have a shunt fitted was 7 days after.  I had a 2-hour operation where a valve was fitted into my brain, allowing the fluid to drain from my brain through a pipe down into my stomach.  This ensured that the pressure it was placing on my brain was removed.  The surgeon was happy with how everything went and a date was made for the bulk of my tumour to be removed.

Unfortunately, due to COVID, my operation had to be rescheduled a couple of times, but on 1^st February 2022, I underwent a 9-hour surgery where the wonderful NHS neuro surgeons were able to remove 95% of it.  The 5% remaining was near my facial nerve and for this reason, they decided not to remove that last part so as to avoid me having permanent facial palsy.

Following my operation, I completely lost the hearing in my right ear, along with sense of taste on the right side of my tongue and a lack of tear production.  All things that 19 months later, I’m still trying to manage and come to terms with.

Before my diagnosis, I was a regular gym bunny …. Cardio Bootcamp, strength training and pole dancing (all in one week).  However, since the operation I have struggled to get back and maintain the energetic lifestyle I once did.  The road to recovery hasn’t been easy and continues every day.

The recovery is not just physical but it’s also mental.  A lot of people believe that the recovery aspect is following treatment and the healing of the wound.  Friends and family have been a massive support and continue to be, however, only other Acoustic Neuroma patients truly know what it’s like. 

Every MRI scan or CT scan I have, anxiety kicks in.  Every noisy and busy environment I’m in or going to, anxiety kicks in.  Every meeting where I will need to make an instant decision, anxiety kicks in. 

“…things didn’t work out and unexpectedly they let me go just before the end of my probation period.”

This has had a knock on effect with my job.  The company I was working for when I was diagnosed were fully supportive of both me and my family, and allowed me to go back at my own pace understanding the needs that I had. However, due to a change in circumstances I found myself with a new role earlier this year.  Unfortunately, although having been upfront about my hidden disabilities during the interview stage, things didn’t work out and unexpectedly they let me go just before the end of my probation period. 

This was the first time a company had ‘let me go’ and it has been difficult to deal with, my confidence and self-esteem hitting rock bottom (again), so when Sara approached me and invited me to be a part of The Beyond Recovery Project, I immediately knew it was something that I needed to get involved with.

“It’s been 19 months since my main operation and I’m still learning how to be ‘me’”

It’s been 19 months since my main operation and I’m still learning how to be ‘me’ and embrace the ‘new normal’. The passion, belief and inspiration of Sara and others within The Beyond Recovery Project team is infectious; this trip is something I’ve never done before and before my diagnosis wouldn’t have even dreamed of. However if I am to be thankful of my ‘companion’ for anything, it has given me another lease of life and the word CAN’T doesn’t now appear in my vocabulary.”

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

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