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This fundraiser is to raise vital fund for the British Acoustic Neuroma Association (charity 1165065)

BANA was founded by a group of patients and partners who received treatment at Queen’s Medical Centre, Nottingham QMC). The charity has a mission to be a trusted and reliable source of information and support and shared experiences. BANA is supporting me personally. Here is my brief story…

At 54 years of age, leading a busy life, working as an underwriting director at TMHCC and approaching my 30th work anniversary. I received the devastating news I have a benign brain tumour, specifically an Acoustic Neuroma. I am married with 2 grown up children and a grandson. I was until then and a bit beyond, very active - swimming cycling, running, playing clarinet in a local concert band and learning piano. Life was good. But it changed suddenly. No one could believe this was happening to me. Including me. I look exactly the same as I did pre diagnosis. Ok maybe some facial weakness. Oh and don’t ask me to stand up.

Initially I thought my symptoms were menopause or age related -some loss of hearing, tinnitus and dizziness as well as brain fog. I first thought something was wrong in summer 2023 when my hearing seemed off. The GP gave me a referral to ENT. I never followed that up. If I had my journey may have been easier. If you have hearing loss please get it checked.

Early in 2024, I noticed my hearing was getting worse but more worrying was that I always felt dizzy or off balance and experienced some head and neck pain and the aura associated with migraine. Prompted by a couple of concerned colleagues, I got a private referral to ENT and at the end of August, I met an ENT consultant and audiologist who sent me for an MRI as a precaution. 3 weeks later I had the MRI and very soon after that, I received a call from my ENT consultant to tell me I had a 3cm Vestibular Schwanomma (more commonly known as acoustic neuroma a form of benign brain tumour. I was told I would need surgery and it would be quick.

That was 29th September 2024. I went into denial, not accepting for weeks that the tumour was mine. Realisation came on 19th November when I was hospitalised following a collapse and two further scans confirmed the tumour was indeed in my head. All this time I was still working. I had run a 10km race on 25th August 2024. With a large brain tumour. I didn’t know.

On 12th Dec I will be having complex brain surgery to remove the acoustic neuroma at Queens Medical Centre. During the time from diagnosis, I reached out to collect information and build support for the journey and BANA was one of my key charities. (Also Brainstrust and The Beyond Recovery Project). I was on a journey that no one wanted to be on. A journey to coping until surgery, surgery and then rehabilitation to learn to deal with the long term disabilities associated with this illness and surgery. Likely problems post surgery are dizziness, fatigue, single sided hearing loss, tinnitus, facial palsy and possibly other things. The saving grace was that I would not die and it was not cancer. I hung onto those two facts. I would find a way to overcome the disabilities and lead a fulfilling, if different, life.

I would like to raise money to support BANA who have been so crucial in helping me navigate and come to terms with this diagnosis and will help me as I try to recover and resume some kind of normal life. I am not undertaking a single physical challenge like a running event -I have done plenty of those but the challenge for me is to get through surgery and climb the mountain of recovery one stone at a time, It will also be my birthday 3 weeks after surgery and one month from today and I would prefer donations to this charity than any presents.

Please donate generously and if you want more information or to be one of my support crew please do get in touch with me.

The challenge will commence on Christmas Day 2024 and continue until I am satisfied I have pushed my recovery as far as humanly possible. I will update with the individual challenges here and on my Facebook page. My first challenge to eat Christmas Dinner 2024 at home. Just 12 days after major brain surgery. It is possible let’s see.

Jane

UPDATE 11/02/2025

Surgery went well and I was home 5 days later. Unfortunately I then had a Cerebral Fluid Leak and was back in hospital for a further 10 days, 5 of those on a lumbar drain. I was allowed home on 31/12/2024 just in time to greet the new year.

Since then I have been working hard to recover and overcome my disabilities, which are mainly Single Sided Deafness, Fatigue and poor balance.

I didn’t make it home for Christmas dinner but did make it home for my grandson’s birthday and my own birthday, enjoying birthday cake for both. That was about my limit. Since then I have managed to start walking independently with fluorescent pink Nordic Walking Poles, have caught a train and a bus, managed to swim 40 lengths of the swimming pool (you don’t need balance to swim if you can actually get into the pool) and completed my first 5km parkrun since surgery (walking of course I can’t yet balance well enough to run). I even managed to ride my bike to the end of our very quiet road but that was a bit ambitious with my poor balance (no I didn’t fall off). During February, my challenge is to walk a total of 90km, made up of lots of short walks as I still get tired quite quickly. I’m managing to play piano and trying very hard to play clarinet but that is a bit difficult at the moment due to some facial nerve issues. I even managed to go into a shopping centre -that is a challenge with vestibular issues and not at all pleasant, as a rule I now avoid shops. All this in between lots of sleeping, medical appointments and numerous sessions of physiotherapy and speech therapy.

Future challenges include running Derby 10km, cycling round Rutland Water, climbing CatBells, walking round Buttermere, possibly Nottingham, Half Marathon and I have place in London Marathon 2026….we shall see if I can get physically well enough to actually do that. None of this is easy following an acoustic neuroma diagnosis.

I would never have got this far without the wonderful support of all my family, friends and sponsors. Thank you everyone.