100km SAHARA TREK
Nov 17, 2025 - Nov 21, 2025

100km SAHARA TREK

BEYOND BRIAN AND RECOVERY
Amanda Connor #AcousticNeuromaWarrior

Our individual post brain surgery journey is not only about our physical recovery but also regaining our mental balance, wellbeing, and self-confidence - as well as adjusting to our new normal daily.

“In November 2017 I was diagnosed with an Acoustic Neuroma +25mm pressing on the left-hand side of my brainstem, which I named “Brian in my brain”. My immediate reaction to discover I had a brain tumour which due to its size and location, surgery was my only option, was denial and anger, as I had recovered from surgery and radiation treatment for thyroid cancer only ten years previously. ‘Brian’ my Acoustic Neuroma tumour was 100% successfully removed from the LHS of my brain under the expertise of the skull base medical team following a 10-hour operation at Addenbrookes Hospital, Cambridge in early March 2018.

However, my recovery journey had truly begun and then it came to an abrupt halt when 10 days after discharge I suspected I had a CSF (Cerebrospinal Fluid) leak. Following check-up and emergency CT scan it was confirmed by my neurosurgeon, and I was readmitted into Addenbrookes Skull Base ward and put on a lumber drain for ten days. There is only a 5% risk of developing this post-surgery and it was at this point I hit an all-time low with the return of the facial palsy, as well as feeling afflicted and alone on this journey, as I also developed meningitis as well. I could not even cry properly as my left eye duct was still not fully operational. Turning point was when a teenage girl came on the ward who had a rare genetic brain tumour growth condition and chatting to her mum found out she had already had a number of brain tumour operations and that she was having an AN removed which meant she would be 100% deaf post op. Wake up call to stop feeling sorry for myself and to start putting a positive spin on matters, I still had Single Sided Hearing (SSH) and a full recovery to my new normal life ahead of me.

It was not an easy recovery road post op and adjusting and coming to terms with Single Sided Deafness (SSD) on my LHS as well as coming to terms with my new normal life. I particularly mentally and psychologically hit a brick wall around seven months post-surgery, when the enormity of what I had been through dawned on me. I struggled to find the help to see me through this dark period, but I am naturally a positive person and got through this. Before my AN I was very sociable, but now I am selective about what I do. I wear a cross-aid hearing aid; however, this is not ideal as if I am in an environment with a lot of ‘white noise’ I struggle to zone in on a conversation and suffer from fatigue post being in a busy and noisy environment.

Highlights the importance of the ethos of ‘Beyond Recovery Project CIC’ to inspire and empower brain tumour survivors by bringing together others on the same or similar journey, to create a ‘safe’ space and sense of community, where survivors can share experiences and discover how to push beyond the physical and psychological barriers they face together.

The Beyond Recovery Project is a not-for-profit community interest organisation made up of dedicated individuals from a variety of backgrounds, providing health and wellbeing centred services to the brain tumour community around the UK. Our mission is to promote physical and mental health and wellbeing to individuals following treatment for brain tumours, by empowering them to overcome barriers to their recovery.

We aim to deliver various activities, driven by the needs of the individuals and families we work with. Sponsorship and donations will directly support the organisation of outdoor and other nature-based activities. These experiences not only offer survivors an opportunity to reconnect with nature, but also serve as a catalyst for personal growth, self-confidence and renewed hope.

One motivational WhatsApp post from a friend stands out from my recovery, “Journey to the top of the mountain is worth the climb to see the view from the summit.” In my case I will be joining 8 other brain tumour survivors to trek 100km across the Western Sahara Desert creating footsteps in the dunes to raise awareness and funds for the ‘Beyond Recovery Project CIC’. This will be a once in a lifetime experience and it will be a huge test of my physical endurance and mental resilience, wish me luck!

Every donation big or small will be gratefully received.

Thank you
Amanda X

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The Beyond Recovery Project CIC
The Beyond Recovery Project CIC

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Supporting the physical and mental health and wellbeing of brain tumour survivors, through the provision of outdoor and nature-based activities and therapies. Inspiring and empowering individuals to move forward "beyond recovery".

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