Following a brain tumour diagnosis in 2014, fitness, balance, and confidence were a struggle for Helen Nelder-Chowney, from Brighton. On some days, it was hard to walk in a straight line. But to mark her 60th birthday in September, she’s taking on a triathlon sprint at The Brighton and Hove Triathlon on August 31st – a feat that seemed impossible in the early years of her rehabilitation and recovery.
Helen’s story
When Helen, a playwright and exam invigilator, learned she had a brain tumour – an acoustic neuroma – she was grateful that the tumour was both “accessible and curable.” But even so, the diagnosis had an enormous impact on her life, and that of her family.
Helen said: “There were problems and difficult decisions. How to tell my daughter, who was eight at the time. How to get a job, knowing I would be having surgery that would mean, at the very least, six months of recovery. Not knowing how my tumour would behave – some grow, some stay the same.”
Initially placed on “watch and wait,” Helen had neurosurgery in 2017 after the tumour suddenly grew. Gamma knife treatment – also known as stereotactic radiotherapy – followed in 2021. This was a procedure she had to endure alone, due to Covid-19 restrictions.
In 2022 she was declared free of the tumour, but some of its effects remain. Helen’s balance was affected and she has hearing loss on her left side.
She explained: “It has affected my wellbeing in every way. I couldn’t get a permanent teaching job, I had no spare capacity for being creative and theatre making. Just walking in a straight line was a challenge sometimes, and exhausting. I developed strategies to cope in the early days – fixing my gaze on a particular object and heading for that and always touching a wall if I was having a bad day.”
A big challenge
Helen’s sprint triathlon will be a celebration of her 60th birthday and her return to full health: mentally, physically and creatively. And she’s been training hard for her attempt:
It’s a huge challenge for me, as I had lost a lot of confidence and fitness over the last few years. However, I was already a sea swimmer, and after a year or so of dipping and sploshing about, I had swimming lessons post-lockdown which was brilliant and really helped me learn to swim properly. So I wasn’t starting from absolute zero.
Helen
“At first, I dreaded going into the gym and finding like I really couldn’t do it. I’ve had to start small – setting goals, and building a routine.
“I have been so nervous of getting on a road bike as I can’t hear on my left-hand side and my balance is compromised. The hearing loss also means that I don’t know where sound is coming from, so it’s hard to tell where traffic and other road users are. So, I am dependent at the moment to having a cycling partner who knows how to look out for me.
“My balance issues will affect every discipline in my race: clambering out of the sea; turning my head to look round on the bike and the transition from bike to running can make me extra unstable, so I have to learn how to manage that as well as the transitions. Me not being able to find my bike or forgetting something crucial is likely, but whatever happens, I’ll manage!
“I am not chasing a time, I’m doing it to participate, so without the pressure of racing, I am having fun training and getting fitter. It’s important to me that I participate, finish, and that I enjoy it!”
Fundraising is going well, with Helen well on the way to meeting her £1,000 target.
Daunting as the task may be, Helen is dedicated to her training and is determined to complete it. She said: “I do still get moments when I lose confidence and doubt that I can do it. On other days I feel sure I can!
“I fully appreciate how lucky I was and am, to still be here. I had support from the Brain Tumour Charity who listened when I felt so overwhelmed and isolated. They also helped with practical things, like guiding me through the benefits process, recommending support networks and understanding what I was going through, even though I wasn’t terminally ill.
“I want to highlight the challenges that those with low grade tumours face, whilst being sensitive to those who are terminally ill; and I want to promote the support and research that The Brain Tumour Charity do.
“It is such a devastating diagnosis and it was such a relief to have support from people at the Charity who know so much about it and can guide you through every aspect of what it means and what needs to be done.”
Feeling inspired?
We wish Helen all the very best with her triathlon. And if reading this has inspired you to take part in an event, you need some training tips or fancy organising your own skydive, challenge or trek, we’re here to help you every step of the way!