A Glasgow girl whose childhood was devastated by the symptoms of an undiagnosed brain tumour is calling for more support to be offered to those affected by the disease.
Niamh Rose Mulheron, 23, struggled with daily headaches from a very young age which tarnished her young school years. Despite several trips to the GP over the years, Niamh says that her symptoms were never taken seriously and she wasn’t referred for further tests into what could be happening.
Instead the headaches, tiredness and cognitive regression Niamh was experiencing were put down to her not really trying her best and she was also tested for dyslexia.
Due to her symptoms, she missed a lot of school which made it even more difficult to keep up with the rest of the class.
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Niamh is sharing her story during Brain Tumour Awareness Month which aims to highlight the signs and symptoms of the number one cancer killer amongst those under 40 years old.
Niamh said: “I remember this being a really difficult time for me at such a young age. I knew that I was struggling but I just didn’t know why when everyone else could do the school work but all of a sudden I couldn’t.”
Niamh’s symptoms got a lot worse when she was 14-years-old. The headaches intensified, she couldn’t keep food down and she was sleeping almost all of the time.
One morning, she woke up to the scary realization that her sight had almost gone. Both of her eyes had turned inwards towards her nose and one side of her face had drooped.
Holding on to the wall, she felt her way to find her mum who took her for an emergency GP appointment. The GP said that it could be Bell’s palsy, which would rectify itself in time, but they were advised to go to A&E to be checked over.
Niamh went to the Western Infirmary Hospital where she had CT and MRI scans which found that she had a low-grade ganglioglioma on her left temporal lobe.
It was around the size of a tangerine and it was thought that she could have been born with it. Niamh and her family obviously found this news very distressing but no support services were flagged up which Niamh says had a profoundly negative impact on them all.
Niamh said: “The doctor said that the scan had ‘found something which shouldn’t be there’. He explained it all like I was an adult when I had no way of really knowing what he was talking about.
"I had no knowledge of brain tumours before my own diagnosis and, of course, I was young so I had an expected level of naivety towards these things anyway. It's only really in the last couple of years that I have started to fully understand what happened to me.
“I was worried about my parents reaction too – I knew they were struggling to understand it all as well so I just tried to comfort and support them through it all as well which wasn’t easy.”
Niamh was kept in overnight before being transferred to the Southern General Hospital where she had four hours of emergency surgery that day which removed most of the tumour. This was the first of three surgeries she went on to have – she needed a second operation a couple of months later when another tumour grew next to the original site and then a third emergency operation when she got an infection a few weeks later.
Niamh’s vision slowly returned in the days after her first operation and her face also gradually stopped drooping over the five months which followed too. She didn’t need further treatment as the tumour was low-grade and she is now monitored with annual scans for any changes to her condition.
Niamh was able to return to school intermittently for the final three years after her treatment but she had missed so much before her diagnosis and her attendance was sporadic around her symptoms that she found it difficult to keep pace.
Importantly, the ordeal has had a huge impact on Niamh’s mental wellbeing and she says she is now a totally different person to who she was before. She is very ambitious and would love a job in the caring profession but she still contends with chronic fatigue, headaches and memory issues.
The Brain Tumour Charity provides help, advice and support for Niamh, and others in a similar situation, to help them overcome the practical and emotional obstacles which can come with a brain tumour diagnosis.
Niamh said: “Understandably, my family tried their best to be strong for me throughout it all. After my diagnosis, I also sadly lost a lot of friends as many of them found it difficult to handle what had happened to me. So, I was isolated, lonely and felt that I didn’t really have anyone to talk to. I stayed at home a lot when I used to be so outgoing and loved spending time with other people.
“Weirdly enough, the pandemic was actually a good thing for me. I had already retreated away from so much in life but this just gave me an excuse to continue to do so – no matter how unhealthy it was for me.
“I wish support services, such as those offered by The Brain Tumour Charity, had been flagged up when I was diagnosed and when I really needed them. It would have made a massive difference to my life.
" The Charity’s digital channels, especially its closed Facebook groups, provide a great place to read about other people’s experiences and connect with people who know what this type of diagnosis is like.”
Brain tumours are relatively rare, with 500 children and young people diagnosed every year.
The most common warning signs in children are persistent headaches, changes in vision, nausea and vomiting – especially in the morning, balance problems, delayed puberty, excessive thirst, seizures, lethargy and changes in behaviour including a loss of interest in activities previously enjoyed.
The Brain Tumour Charity’s award-winning HeadSmart campaign aims to raise awareness of the signs and symptoms of brain tumours in children and young adults, both amongst the general public and the medical community. Since the campaign’s launch, the average diagnosis time has reduced from 13 weeks to 6.5 weeks.
Alex Lochrane, Chief Executive at The Brain Tumour Charity, said: “Niamh clearly had a very traumatic time, both leading up to and following her diagnosis. Providing emotional support alongside the practicalities of navigating a brain tumour diagnosis is absolutely essential. Such a diagnosis can completely and utterly turn someone’s world upside down, so everyone affected must be given the help they need to get through it all. The Brain Tumour Charity offers specialist support for this exact reason and we’re here to help anyone who is affected by a diagnosis in a number of ways to suit their needs.
“Since Niamh’s diagnosis, there have been improvements in the speed of diagnosis, especially amongst children and young people, and we’re very proud of the role we have played in that. But there’s still a long way to go before everyone presenting symptoms of a brain tumour gets a speedy diagnosis and the best possible chance of successful treatment.”
The Brain Tumour Charity is the world's leading brain tumour charity and the largest dedicated funder of research into brain tumours globally. For more information on the Charity’s HeadSmart campaign visit headsmart.org.uk
