Brain tumours are the biggest cancer killer of children and adults under 40. According to The Brain Tumour Charity, over 12,000 people are diagnosed each year with a primary brain tumour, including 500 children and young people – that's 33 people every day.
Research offers the only real hope of dramatic improvements in the management and treatment of brain tumours. Over £700m is spent on cancer research in the UK every year, yet less than 3% is spent on brain tumours - something Tegan Josie is looking to change.
Speaking to Lancashire Live, Tegan shared that she was only 11 when she was diagnosed with an inoperable brain tumour, after suffering a 'strange episode' on her walk home from Brownies. She realised she was unable to see out of her left eye, meaning Tegan's mum, Jane, was forced to rush her to a NHS walk-in centre.
A doctor did some tests and thought Tegan was suffering from migraines but Jane insisted her daughter was sent for an MRI scan immediately. Having lost both her sister and her brother to glioblastoma multiforme (GBM) brain tumours in their thirties, Jane was not prepared to take any chances on Tegan. She was diagnosed with an inoperable low-grade prolactinoma aged 11.
Tegan, who is now 23-years-old, said: "I suddenly realised that I couldn’t see out of my left eye. When we got home, Mum did some visual fields tests on me and when she realised there was a problem with my vision, she took me to the NHS walk-in centre.”
She recalled: "Both my aunt and uncle had the genetic syndrome neurofibromatosis type 1 (NF1), meaning they were predisposed to develop multiple tumours in the brain, and Mum was worried that I may have had the same condition.”
After being sent to Blackpool Victoria Hospital, an MRI scan confirmed Tegan had a 3cm pituitary tumour pressing on her optic nerve. Within a couple of days, she was in Manchester Children’s Hospital, where she would spend the next three months undergoing treatment. She was put on the dopamine agonist cabergoline, which worked to shrink the tumour and was told that had it been any bigger, she would’ve needed a craniotomy.
Tegan said: “Dodging surgery was a blessing but I still had a rough ride, which is why I had to stay in hospital for so long. I would get bad headaches and needed to be monitored with regular scans. My thyroid wasn’t responding well and I had excess fluid on my brain. My hospital stay came at a particularly difficult time for me academically. I was in year 6; my final year of primary. It meant that I missed out on a lot of the transition phase, that prepares you for secondary school.”
Unfortunately, when Tegan started secondary school, she struggled to make new friends, having missed out on ‘crucial bonding periods’, which, she says, led to her being bullied.
She explained: “I was in a wheelchair temporarily when I left primary school and later, I was on crutches, which made it difficult to get around the school in between lessons. In the years that followed, I spent several more periods in hospital, due to issues relating to my tumour. In spite of the disruption, I managed to get my GCSEs in all subjects apart from my maths, as I missed that exam while I was in hospital. I did well and achieved the best I could, given the challenging circumstances.”
In 2015, Tegan was dealt a further blow when she was diagnosed with chronic fatigue syndrome. Her health has continued to deteriorate over the years and basic daily activities can be a real struggle. She remains unable to stand for long periods of time and migraine attacks can throw her off small tasks, leaving her exhausted and shaken up.
Tegan’s partner Karl Spedding, 35, from Lytham St Annes, is a great support to her. Alongside the support she gets from her family and Karl, Tegan has been getting increasingly into video gaming, as a way of escaping her health problems.
She said: “I’ve always had a thing for gaming, in particular Pokémon. My interest in the video game series has grown in recent years, especially during lockdown, and I now have a huge collection of Pokémon memorabilia, which has helped my social media to ‘blow up’. Gaming also keeps my brain active and is a form of escapism.
"It allows me to connect with other people online, through our shared interests. It means I’m part of a community of like-minded people and helps me to feel less lonely.”
Tegan has a large social media following on platforms including Instagram, Twitter, Twitch and TikTok and she’s using her impressive digital presence to share her story and help raise awareness of brain tumours.
She said: “Up to now, I’ve shied away from sharing my story with all but my closest friends and relatives. Recently, I decided that maybe I should be more open, especially since mine is an invisible illness and not many people would know what I’m contending with on a daily basis. I’ve had a fantastic response and people are so supportive. I hope that maybe I can inspire and offer hope to others.”
Matthew Price, community development manager at Brain Tumour Research said: “We’re really grateful to Tegan for sharing her brain tumour journey, to help shine a light on this critically underfunded disease. We’re sorry to hear of the challenges she continues to face but pleased that her prognosis is good, which sadly is not the case for many brain tumour patients.
"It’s only with the support of people like Tegan that we’re able to raise awareness of the need for more funding into brain tumour research, to improve options and outcomes for patients who are forced to fight this awful disease.”
As the culmination of Brain Tumour Awareness Month, this Friday 25 March is Wear A Hat Day. The day has become a nationally important fundraising and awareness event that people all across the UK support every year and is a great way to bring people together and raise vital funds for Brain Tumour Research.
To get involved in Wear A Hat Day, visit: www.wearahatday.org.
To donate to Brain Tumour Research in support of Tegan, go to: www.braintumourresearch.org/donation/donate-now and quote ‘Tegan Josie’.
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