PREVIEW

NOTE TO EDITORS: PLEASE DO NOT REMOVE REFERENCE TO RAYS OF SUNSHINE

WORDS BYLINE: Sarah Ingram

Teenager Alex Arkell was on holiday with her family when she started suffering from a bloated and painful tummy.

As soon as she got home she made a doctor’s appointment and was given blood tests - but after a second visit a week later she was sent straight to hospital for an ultrasound.

By this point, Alex, who was just 16, had lost peripheral vision in her left eye and was told that her ovaries had grown by 13 cm. Further tests concluded that Alex had a rare brain tumour that affects only 20 people in the world.

Alex, from Stirling, had a rare follicle-stimulating hormone (FSH) secreting pituitary adenoma; doctors told her surgery was vital and urgent and that Alex was just a week away from death.

'At just 16 years old, my life flashed before me. What I truly cared about, meant nothing to me from that day on.

‘I’ll never forget the room I was waiting in with my mum, filled up with consultants and they told me: “We thought you had ovarian cancer but it’s actually a benign brain tumour and we need to operate urgently before you lose your eyesight, and your cysts burst”,

'I was admitted to hospital for emergency surgery two days later. I don’t know how to explain how I felt in that moment. I didn’t even know what “benign” meant. At that time, I didn’t know how this was going to change my life’, she explains.

‘I was overwhelmed, scared, anxious and worried about the surgery. I wondered if I would die. Or would I have a scar on my face?’

Alex, now 19, had complications following the surgery in 2021 and spent two weeks in hospital where she struggled to eat, sleep and walk.

‘I experienced a wave of feelings, but I also remember feeling cared for and safe with nurses and consultants checking in with me and monitoring my hormones, bloods and condition every hour,’ she says.

She was later diagnosed with PTSD, which left her with panic attacks and flashbacks.

It took her months to recover and Alex - who was supposed to be sitting her exams - missed nearly the whole year of school and lost friendships.

Heartbreakingly, 13 months later Alex learned she needed further emergency surgery after the tumour, which had grown, was found to be pressing on her optic nerve again. And in February 2023 she attended The Christie in Manchester for five weeks to have proton beam therapy - a special more targeted and less invasive radiotherapy.

‘I was scared and worried. I felt extremely anxious and full of panic of the unknown. I had to have a special face mask made for the radiotherapy and I had to stay away from home for five weeks in a hotel’, she remembers.

‘It’s been a really difficult time. I’ve lost some important teenage years and missed out on education and friendships. I’ve had to rely on - and remember to take - medication to keep me alive. I’ve had so many tests, MRIs, and appointments and I’ve had to have radiotherapy which keeps me away from my home and family. I’m grieving my old life and coming to terms with living with such a rare pituitary condition. I’ve had to see the impact this condition has not only on me, but on my family’, she says.

But there have been positives too. Earlier this year, Alex was taken to Louis Vuitton where she was given her own handbag thanks to charity Rays of Sunshine which aims to brighten the lives of seriously ill children across the UK. And even though she is still receiving therapy and facing daily struggles, in October she took on the 20-mile Edinburgh Kiltwalk to raise money for Rays of Sunshine because - in her words - she wanted to make sure other young people like her could have wishes too.

‘I loved receiving my beautiful Louis Vuitton bag, I remember feeling overcome with emotions and crying when I received it.

‘It was an amazing experience which helped me forget about my condition for a few hours and made me feel more positive about the last few years. It was a memory in which I will treasure forever. I have learnt to stay in the moment and be present. I try to do things that make me happy and find joy in the small things,’ she says.

But in December, she received more bad news. She was told that radiotherapy hadn’t worked, that her tumour had grown and she would need a third surgery.

‘After getting over the complete shock of the sudden news. I stayed in the moment, reassured myself and used the skills I have learnt over the last few years, remembering "This too shall pass”. I began to feel the mentally strongest I had ever felt, I felt ready,’ she explains.

‘The surgery couldn’t have gone better, and just five hours after I woke, I got my mum to record me singing along to “staying alive” while having a little dance,’ she says.

She is now four weeks post-surgery and is feeling positive about the future. ‘Although this isn’t the end of my story, I have learned to never let my condition, my anxiety or anything else that comes my way define me. I have been taught the hardest but most valuable lessons in life, in such a short amount of time and I am ready to start again and be in control of my life again.

‘Life is special, valuable and shorter than we realise, I have been extremely lucky to have received the level of care to get me through things, I never thought I’d have to go through. Enjoy every minute, even the bad ones, do the things you dream about doing, take the risk, because we only get one chance, so don’t hold back. In the words of my Grandma, “If you worry, you die, if you don’t worry, you die, so what’s the point of worrying?”’ Alex adds.