In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Radiotherapy graduate Kaite’s surgery to remove an acoustic neuroma brain tumour was delayed because of lockdown. Ahead of the operation this autumn, Katie is preparing herself physically and mentally by taking on a series of daily Walks of Hope to raise money for the charity Brain Tumour Research.
I did my degree in neuroscience at University College Cork and then went on to study radiotherapy oncology as a post-grad. At the beginning of 2018 I began to suffer from tinnitus and when I mentioned this to my GP, during a consultation about an unrelated matter, investigations began.
I had suffered from build-ups of ear wax as a child and I passed off my experience and the fact that my hearing on one side seemed to be muffled as something like that. When a subsequent ear exam showed I had profound hearing loss on my right side. I was deeply shocked to learn that, at 27, I was nearly deaf on one side.
Because of my age, I was just 27, I was referred for an MRI which took place at the Royal Infirmary of Edinburgh, the city where my fiance Brian and I live.
“The scan revealed what was described to me as ‘a small growth’ on a nerve in my inner ear. How could this be? I was in such shock.”
The day was a blur from there and I was just so thankful to have Brian by my side while we told all of our loved ones. Whilst my clinical experience mean I had good knowledge of what an acoustic neuroma was, it couldn’t have prepared me for what getting a diagnosis is like for both the patient and their loved ones.
When most people hear “benign” or “low grade” they usually think that everything will be OK. But this is far from the case as a low-grade tumour in the brain causes a multitude of problems and, in severe cases, can be fatal. The main symptoms of this type of brain tumour are hearing loss, tinnitus, fatigue, vertigo, migraines, and balance issues.
“Compression of the nerves can also cause facial numbness and weakness in the facial muscles with continue growth being life threatening as it causes compression on the brain stem.”
There were three options available to me. One was to watch and wait – effectively do nothing – have radiotherapy or go for surgery. For the first 18 months I waited to see what would happen. Then a scan revealed the tumour had grown by around 3mm which is three times more than expected in a year.
In March, and just as the UK was going into lockdown, I was referred to a neurologist and it was agreed I would have surgery. However, coronavirus meant it was too risky to go ahead then and the operation was postponed until autumn. I was happy with that as I felt it gave me time to come to terms with what was going to happen and also to work on my physical fitness.
In addition to the loss of hearing the tumour has also affected my balance. After my diagnosis I didn’t feel I could continue my work in oncology and, for a while, I was a guest relations co-ordinator at a hotel in Edinburgh which I really loved. Sadly, I was furloughed and then made redundant as a result of Covid-19.
I’ve tried to use my time positively during lockdown. I am quite wobbly on my feet and I’ve been building up my strength by walking regularly and also walking through the sea off Portobello. I am keen to raise awareness of brain tumours and, particularly, the lack of investment in research to find new treatments and, ultimately, a cure. That’s why I will be taking part of Brain Tumour Research’s Walks of Hope.
I will be aiming to reach a total of 75km by walking every day in September – I’m calling it my September Slog - before my surgery. I want to take advantage of the lovely landscape here and to visit places such as Musselburgh, Holyrood and North Berwick. I hope that some of my friends will join me too.
I hope that reading my story will encourage people to get checked if they have symptoms similar to mine. I also hope to show that wearing hearing aids isn’t as bad as people might think; they have greatly lessened the tinnitus and really improved my social life too as I can now cope much better in busy environments.
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 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 touched by Kaite’s story and would like to know more about our lobbying, research updates and fundraising opportunities, please sign up to our weekly e-news.
If you’d simply like to help with a donation, please donate here.
Together we will find a cure