In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Andy Shipsey was diagnosed with an acoustic neuroma five years ago. Since then, he’s had to adapt to a new norm. Once a keen footballer, runner and cyclist, his tumour caused irreversible deafness and vertigo, meaning he can no longer enjoy the sports he loved. Andy, 37, works in finance for University Hospitals Plymouth NHS Trust and lives in Plympton with his partner Ruth, 49, and her son Ben, 23, who recently completed a 10k run for Brain Tumour Research.
Here is Andy’s story…
Having worked in the NHS for more than 14 years, I never thought I’d be the one needing critical care. I now have an entirely different perspective as a patient and am grateful for the excellent treatment I have received. My acoustic neuroma tumour, albeit low-grade, has had an enormous impact on my life. I live with irreversible symptoms including deafness in my left ear, vertigo and fatigue.
The symptoms I experience on a daily basis mean I cannot enjoy the things I used to. I have always been sporty; I played football and enjoyed long runs and cycling. Sadly, I can no longer lead this lifestyle. While I enjoy walks and taking part in parkrun, strenuous exercise would be impossible because of my vertigo.
“The hardest part about the last few years is every time I have treatment and am given a glimpse of hope, my tumour comes back. I remember thinking ‘is this it?’ and just wanting to give up. But I’ve always found a way to keep going.”
My brain tumour journey began in September 2014. I remember playing a football match with work colleagues and struggling to walk in a straight line. I also experienced hearing loss, which prompted me to see my GP. A hearing test showed that I was completely deaf in my left ear.
The doctor wasn’t overly concerned and thought my deafness was due to water on my eardrum. However, my symptoms didn’t improve in two months, and I was soon back at the GP searching for answers. It never crossed my mind that I might have a brain tumour, I wondered whether I simply had an ear infection.
“My optimism soon came to an end when I was referred to an ENT consultant at Derriford Hospital for an MRI scan. My experience working in the NHS made me think something serious was going on and after googling my symptoms I was struck by how similar they were to those of acoustic neuroma patients.”
A day after the scan I was called in for a follow-up appointment and the sense of urgency added to my concerns. The alarm bells proved to be true, the scan revealed a tumour more than 4cm attached to my auditory nerve. I was shocked at its size.
The news couldn’t have come at a worse time; Ben was off to university the next day and it was supposed to be an exciting new chapter for us all. I didn’t want to worry him and I felt for Ruth, who tried to be there for us both.
The tumour was adding pressure on my brain, so I was immediately booked in for debulking surgery. I had a 10-hour operation under the excellent care of neurosurgeon James Palmer, at Derriford Hospital. The procedure knocked me for six and I wasn’t prepared for how hard the recovery would be. I was in critical care for two days and it was difficult to even eat and move. I felt terrible. My auditory nerve was irreversibly damaged during surgery, causing permanent deafness in my left ear.
I was signed-off work for two months and while my recovery was slow, I felt stronger every day. It was nice to be back at work and I felt like I was myself again, in a routine.
“I had further debulking surgery in May 2015 and I recovered better. I had more energy and was looking forward to the summer months ahead.”
My facial nerve was damaged during surgery and for several weeks I was unable to blink. I had to manually close my left eyelid. After weeks of exercises, I was able to blink again and now it’s something I never take for granted!
A follow-up scan showed that there was still some residual tumour. I was offered stereotactic radiosurgery, a non-surgical radiation therapy, to try and stabilise the tumour. The treatment, which took place in July 2016, involved being fitted with a mask, which felt awfully claustrophobic.
Even after so much treatment, my tumour is still growing and is now almost 3cm. It’s hugely disappointing. I’m currently having routine scans but am fearful of further treatment, in case of further damage to nearby nerves.
Despite the difficult days, it was wonderful to see Ben graduating from the University of Kent with a 2:1 in philosophy. I was relieved my illness hadn’t affected his studies. We also welcomed a new addition to the family, Bonnie, a cockerpoo, who is a joy to be around.
“I was so proud of Ruth and Ben, who completed a 10k run for Brain Tumour Research in October 2019, raising more than £600.”
I’m relieved that I can still work and drive. Having connected with other patients on social media, I know that many brain tumour patients are not in this position. My employer has been hugely supportive and I work one day from home, helping me to feel less fatigued.
My next annual scan is in the summer and, as I can’t do anything about the results, I try to carry on and lead a normal life. The scans bring my emotions to the surface and I’m reminded that my tumour is still there, so I’m desperately hoping there’s been no further growth.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been inspired by Andy’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.