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“I wish support had been flagged up when I was diagnosed.”

A young woman who spent her childhood blighted 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, from Glasgow, 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 that she wasn’t referred for further tests or investigations into what could be happening to her.

The headaches, tiredness and cognitive regression she was experiencing were put down to Niamh not really trying her best. Due to her symptoms, she missed a lot of school which made it difficult to keep up with the rest of the class. She was also tested for dyslexia instead of having the medical examinations she really needed.

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. Her headaches intensified, she couldn’t keep food down and she was sleeping 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.

She held onto the wall and felt her way to find her mum who took her to an emergency GP appointment. The GP said that it could be Bell’s palsy, which would rectify itself in time, but the family were advised to go to A&E to be checked over.

Niamh 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 so it is thought that she could have been born with it. Niamh and her family obviously found this news very distressing and she said that the way in which it was delivered by the medical team, and also how no support was flagged up, had a profoundly negative impact on them all.

“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.”

Niamh.

Niamh was kept in overnight at the Western Infirmary Hospital 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 to remove a bone flap 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 stopped drooping and returned to how it was prior to her diagnosis after around five months. She didn’t need further treatment as the tumour was low-grade and she is now monitored every year for any changes. A cyst was found during a recent scan, which Niamh wasn’t informed about at the time, which is currently being investigated to find out why.

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 put a front up 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 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.”

Niamh.

Niamh also wants the medical community to be more aware of the signs and symptoms of the condition, which could have helped to speed up her diagnosis.

She added: “I wish the doctors had looked more closely at what was happening to me at the time. The signs were clearly there but they were just brushed off. If my eyes hadn’t crossed that day then maybe it would have all gone on for even longer too. They couldn’t ignore me when that happened – but it shouldn’t have had to get to that stage before any medical tests were done.”

Brain tumours are relatively rare, with 500 children and young people diagnosed every year, They are also the largest cause of preventable or treatable blindness in children. There are many signs and symptoms of brain tumours which can vary depending on the age of the person concerned. The most common warning signs amongst children include persistent headaches, changes in vision, nausea and vomiting – especially in the morning, balance problems, delayed puberty, excessive thirst, seizures and changes in behaviour including lethargy and 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 amongst 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. For more information visit here.