Raising money for The Beyond Recovery Project and to raise awareness of Acoustic Neuroma brain tumours

Shortly after the birth of my son Zachary I was diagnosed with a brain tumour called an Acoustic Neuroma. Acoustic Neuromas (also known as Vestibular Schwannomas) are benign (non-cancerous) tumours that grow on your eighth cranial nerve which is responsible for your hearing and balance. Symptoms can include hearing loss, tinnitus, balance problems, facial numbness, headaches, ear pain, difficulty swallowing, voice changes and visual disturbances. Despite my tumour being benign, the size and location of it meant it was compressing my brain stem so needed to be removed else it could be fatal. These tumours are in such close proximity to your facial nerve (7th cranial nerve) that removing them makes them very tricky. Causing damage to this nerve often leaves people with severe long term facial palsy and difficulty eating and swallowing.

I had my 10 hour brain tumour surgery (and abdominal fat graft to fill the hole!) in March 2024 and was expected to be in Salford Royal hospital for 5 days. Unfortunately I developed a cerebrospinal fluid (CSF) leak and meningitis which was then followed by a reaction to the antibiotics trying to save me, but at least I have an epic scar to show for it. These complications meant I was in hospital nearly a month and I have no recollection of the middle weeks when I was so out of it with the meningitis. Being away from my family was tough and I was worried Zachary wouldn't remember me.

Zachary took his first step the day before I went into hospital. I'm sure he knew how important it was to me not to miss it. I then had to learn how to walk and balance again after my op. Several weeks after returning home I couldn't even manage to walk to the end of my street. Due to my CSF leak and proceeding complications, I wasn't allowed to lift, carry or elevate my heart rate until 4 months post op; that meant not lifting Zachary for all that time. I also developed a pseudomeningocele (abnormal collection of CSF behind the wound) which stuck around until about 4 months post op. With the surgeons having to sever my vestibulocochlear nerve I am now completely deaf in my right ear (known as single sided deafness) and have permanent balance issues. I also suffer with neurofatigue, physical fatigue, facial numbness, facial twitches, tinnitus, neuralgia, visual issues and issues with my taste. I am still learning to adapt to my new life and my new normal. Unfortunately all of my tumour couldn't be removed else I would have been left with severe facial palsy so I have regular MRI scans and will need radiotherapy if the tumour starts to grow again.

Neurofatigue also known as mental fatigue is a hidden disability and is not understood by many. It is different from physical fatigue. Neurofatigue is a decrease in concentration, focus, memory, recall, and word retrieval. This fatigue or tiredness is not the same as exhaustion due to physical exertion, insufficient sleep, or overworking. It is common in those with brain injuries.

I've been told "You look fine now", "There's nothing wrong with you" and my personal favourite "There's lots of people that don't have brain tumours that can't walk as far as you". Well yes, that is probably true, that the mile I can walk now may be more than lots of people. But when you were doing a 10 mile hike up a mountain to be then only able to walk 1 mile is very different. I was a very active person prior to my surgery, but now people have no idea that the parkrun or walk I did at the weekend floored me and resulted in not leaving the house for 2 days. People only see my good days. The lack of ability to exercise physically has also had a massive impact on my mental health.

Even some family members don't get it. A recent comment at a family meal, which was in a noisy restaurant, about me being "rude because you left early" really struck home about how neurofatigue and hidden disabilities are really misunderstood. They don't understand that had I not left early (and we're only talking 8pm here, and I certainly didn't want to) I would have been in bed until 2pm the next day and had to miss out on taking my son to the park. People don't understand that I have to plan my diary weeks ahead so I can have rest days. And those rest days can be after something simple like meeting a friend for lunch, not running a marathon. In fact I'm currently finding neurofatigue much much worse than the physical fatigue.

My Single Sided Deafness (SSD) does not help this neurofatigue one bit. When someone can hear well with both ears their brain is able to filter out unwanted background noise and concentrate only on what they want to listen to. With SSD I struggle with hearing sounds or speech on the side with the deafness because the head naturally blocks some sound from that side making it harder to hear for the ear with a normal level of hearing (this is called the 'shadow effect'). I can't identify what's causing the sound or the direction it's coming from or judge how far away the source of sound is. I can't understand speech when there is background noise such as a tap running or a radio playing, because my good ear homes in on that noise and ignores the person speaking to me. I've been told "But you've got one good ear". They don't understand the level of fatigue Single Sided Deafness causes in itself and how embarrassing it is to completely ignore someone or ask them again and again to repeat themselves. Unfortunately because my cochlear nerve had to be cut during the operation it means any hearing aids can only direct sound to the good ear, so it doesn't help with processing sounds and the fatigue it causes.

As well as the amazing support from Ross and my family, The Beyond Recovery Project has been a life saver. This organisation has provided support before, during and after my surgery. When I was in hospital it struck me that I might not be ever able to do the things I love to do again, such as mountain hikes or exploring the great outdoors. I cried at the fact that I may never be able to complete my bucket list. Tough Mudder being on that list. The Beyond Recovery Project empowers and inspires brain tumour survivors. So when Sara who started the organisation messaged me asking if I'd be up for doing the Sahara 2025 challenge I jumped at the chance. I mean I had already said yes before I knew the challenge would entail a 100km trek over 5 days in sand dunes. I thought to myself, "If other brain tumour survivors can do it, so can I". This is exactly what I needed to give me a sense of purpose and a goal to aim towards. I wouldn't be where I am today and have the motivation to keep going if it hadn't been for some of the amazing people I have met through this organisation. As I like to say "I'm not in a box yet".

On 26th July I am taking on the Tough Mudder 15km challenge to raise money for The Beyond Recovery Project. I've also signed my better half Ross up for the challenge (they were doing a 2 for 1 Black Friday deal so seemed a shame not to use it!). Before my brain tumour diagnosis I would have given every excuse under the sun as to why I kept putting Tough Mudder off. I mean I currently can't run more than a mile in one go, but now my mindset is different and I'm ready to work towards the challenge. If other people can do it, why can't I? Any donations however small will help this organisation continue to support and motivate brain tumour survivors.