A teenager who visited doctors 15 TIMES suffering from headaches and was repeatedly told she was suffering from migraines actually had a brain tumour.
Beckie Hiley, 19, discovered she was living with an undiagnosed brain tumour for over a year – after she was repeatedly told she was suffering from migraines.
The English Literature student said she was living with “crippling headaches” which left her unable to work – as doctors told her they were down to her family history of migraines.
However, the young student, from Chelmsford, Essex was eventually diagnosed October last year with a brain tumour after being rushed to a specialist hospital in London.
She said: “It has been a really tough journey. Going through a year of suffering and nobody is listening is the worst bit.
“The doctors were putting them down to migraines. But little did I know I was sitting in their office with a brain tumour.
“It is crazy when you are trying to tell a doctor you are having the worst headache of your life and they just send you round the corner with headache drugs.”
Beckie says she started to take time off from her job due to headaches in November 2017 but says her “crippling” headaches started in March 2018.
She has since had two major operations to remove the tumour.
Beckie says her headaches increased in severity and she suffered from frequent bouts of intense vomiting.
However, she says she wasn’t able to carry on her study’s at University of Suffolk based in Ipswich, because she was suffering from such severe symptoms of pain and sickness.
She adds: “I couldn’t keep any food down and I could barely walk from my bed to the sofa. I had no energy whatsoever.
“I was going through Freshers’ week, meeting my lecturers and I started getting double vision, which is difficult when you’re studying literature.
“I made it to one lecture and in that, I had to leave half way through to go to A&E. I just couldn’t go on.”
Beckie says when she went to A&E in Ipswich, the doctor said she was suffering headaches and when she asked for a CT scan he said she did not want to do it due to the “radiation”.
Beckie’s mum, Emma Hiley, had to pick her up from Ipswich that day as she “couldn’t function and kept seeing double vision” and took her to Specsavers in Chelmsford.
The optician had noticed Beckie’s optics nerves behind both eyes were incredibly swollen and referred her immediately to the eye department at Broomfield hospital, in Essex and ordered a CT scan.
Beckie said: “October 12, 2018 changed my life forever”.
Beckie says the doctors had found a lesion on her left frontal lobe and a biopsy later revealed it was a grade two gemistocytic astrocytoma brain tumour.
The swelling behind both eyes were caused by the brain tumour pushing against her skull – this was causing the headaches.
She said: “I remember the doctors coming into the room looking like a ghost and said, ‘I am very sorry’ and at that point it was like I had an out of body experience.”
A brain tumour is a growth of cells in the brain that multiplies in an abnormal, uncontrollable way.
Brain tumours are graded from one to four according to their behaviour, such as how fast they grow and how likely they are to grow back after treatment.
Beckie said: “It was such a surreal out of body experience – but I was so relieved at the time because after eight months of suffering.
Just a week after receiving the diagnosis, Beckie was taken to University College London Hospital where neurosurgeon Mr Neil Kitchen performed the first of two craniotomies on October 24.
A craniotomy is the surgical removal of part of the bone from the skull to expose the brain.
After eight months of headaches for Beckie she went under her craniotomies which lasted for around four hours each one.
However, as Beckie was recovering the early weeks of 2019, her headaches returned and she was hearing an “air” sound in her eye.
She had gone back for another scan and doctor’s had found the tumour had regrown.
The updated diagnosis was a possible progression to anaplastic astrocytoma, which is grade three with more active cells and Beckie went through her second craniotomy on February 7.
Like for her first, she was given 5-ALA, commonly known as the ‘Pink Drink’.
She said: “It makes tumours glow under UV light during surgery to aid surgeons in removing them.
“Doctors began by cutting into my skin, then cutting through the layers of muscle until the skull is fully visible.
“Small circular hole were drilled into my skull and then a specialist saw is used to connect the holes, creating a bone flap which is removed and reveals a protective layer, this is cut which reveals the tumour.
“They drained the cyst which was there causing the pressure in my head and making a noise in my ear and sent me in for another MRI scan to ensure it was all gone.
“They noticed there was still a bit of the brain tumour there and got rid of it all.”
Beckie’s surgery was a success and she is currently undergoing a course of radiotherapy, followed by chemotherapy as the year continues.
She added: “When we looked at the scan after the operation, it was the best looking scan you could possibly have.
Beckie is now raising awareness and supporting The Brain Tumour Charity and their Young Adult Services.
She added: “I just want to raise more awareness for this
“Obviously I have my moments and there is still apart of me that is in a bit of shock
“I know people take advantage of the A&E but why could they not look at how long I had been suffering this for and I have now met so many more people who have been suffering from them for longer
“It has definitely been an experience.”
Sarah Lindsell, The Brain Tumour Charity’s chief executive, said: “We are so grateful to Beckie for sharing her story – she is a remarkably resilient and inspirational young woman, determined to raise awareness about brain tumours to help save others her ordeal.
“Early diagnosis is crucial to save more lives and reduce long-term disabilities caused by brain tumours – the biggest cancer killer of children and under-40s in the UK.
“Our HeadSmart campaign aims to raise awareness of symptoms in children and young people, and reduce diagnosis time.”
Visit the Young Adults Service on the Brain Tumour Charity website to help raise awareness of young people’s brain tumour symptoms and reduce diagnosis time.