Watch: Woman loses all her childhood memories after life saving surgery to remove a brain tumour
When Weronika Fafinsk, 22, From Edinburgh, first came round from life-saving surgery to remove a brain tumour, she was terrified to realise she didn't recognise the man and woman sitting beside her bed lovingly holding her hands – her parents.
Nor could she remember anything that had happened before that day. Christmases, birthdays and all her happy memories of being a child had totally vanished.
It turned out Fafinsk had suffered permanent memory loss of her entire childhood up until the age of 14, when she underwent life-saving surgery to have a brain tumour removed.
But despite the trauma of forgetting the first 14 years of her life, Fafinsk is grateful the surgery was successful and is embracing adulthood after surviving the cancer that could have killed her.
Fafinsk, an office manager, who lives with her boyfriend Cameron Somerville, 24, first realised something was wrong when she was on holiday in Poland visiting family back in 2012 and couldn't hear the music she was playing.
"My dad had bought me some headphones for the journey, but I couldn’t hear anything in my right ear," she explains. "I was practically deaf."
A GP in Poland confirmed that she had gone deaf in her right ear and when she returned home to the UK, she was immediately transferred to the Royal Hospital for Children and Young People in Edinburgh.
There, she underwent an MRI scan and was shocked to learn she had a brain tumour.
"The doctor thought it was a grade one tumour and said I may have had it since I was little," she says.
The then teenager underwent surgery in February 2014 to have most of the tumour removed but was devastated to wake up with unexpected memory loss.
Read more: Brain tumour signs and symptoms
Opening her eyes after surgery, Fafinsk was horrified to find she could not recognise her own parents who were sat beside her bed.
It was the first indication that something was very wrong, that the memories she'd spent 14 years creating were gone, never to be recovered.
Watch: Woman with brain tumour told 'go home and watch Netflix'
As well as not being able to recall the family she'd always known, Fafinsk had no memory or knowledge of other, regular day-to-day tasks.
"In the car going home, I was sick three times because, in my mind, I had never been in a car before," she explains.
"I was so scared because I didn’t know where I was going."
When she reached her home, she felt like she was walking into a stranger's life.
"When we got to the house, I didn’t recognise it. I didn’t recognise my bedroom and I didn’t like the clothes in my wardrobe or anything in there."
Her confusion continued as she tried to settle into life at home and had to relearn how to do even simple, everyday tasks.
"I didn’t know what anything was," she explains. "I didn’t know that an oven got hot, or what a football was, but weirdly I was able to pick certain things up, such as my maths timetables, right away.
When she returned to school, life was even more overwhelming. Fafinsk was met by hundreds of people she didn't know or recognise, including her closest friends, people she'd spent years building memories with.
She struggled to cope in a world that didn't make sense. Understandably, Fafinsk's parents say they noticed a complete change in her personality as she struggled to adjust to life post-surgery, without the skills and memories she'd spent 14 years gathering.
For six years as she tried to rebuild her life, Fafinsk's tumour also remained stable, but a scan in March 2021 brought devastating news: the mass had grown in size.
A further scan in August 2021 revealed it had grown again and with her next scan due imminently, Fafinsk is working hard to raise awareness about the symptoms of brain tumours.
She has joined a fundraising challenge run by the Brain Tumour Research charity where she will be sponsored to walk 10,000 steps every day for a month.
The Brain Tumour Research charity first ran the fundraising challenge last year and managed to raise over £1million to help sufferers. This year, the charity has even higher hopes.
"We’re really grateful to Weronika for taking on this challenge for us," says Matthew Price, Community Development Manager at Brain Tumour Research.
"It’s only with the support of people like Weronika that we’re able to progress our research into brain tumours and improve the outcome for patients like her who are forced to fight this awful disease."
Despite her incredible strength, living with the constant fear that her brain tumour might continue to grow is an ongoing emotional battle for Fafinsk, making it difficult for her to plan her future, how she'd like to.
"Throughout my life, I haven’t thought about meeting people or getting a boyfriend – in a way, I thought there’s no point because I’ll die soon," she admits sadly.
"With a brain tumour, you have three options: surgery, chemotherapy or radiotherapy, and often they’re not even that successful. If none of these work, you’re basically given a death sentence.
"I don’t want to die, so if there’s any hope that the money I raise helps to find a treatment, then it’s worth it."
Hugh Adams from the charity Brain Tumour Research said Fafinsk's story illustrates the unique complexity of brain tumours.
"As we push forward with new surgical techniques and precision radiotherapy, the outlook for some patients is improved," he says. "However, we need to improve in providing therapeutic options – new medicines for brain tumour patients – and we can only achieve this through investment in early stage scientific research.
"At Brain Tumour Research we fund this discovery science and campaign for the Government to support us in doing so. Our voice is becoming ever louder as our community raises awareness and we are hugely grateful to Fafinsk for all she is doing to support us."
Additional reporting SWNS.