A former patient of the Royal Hospital for Children and Young People (RHCYP) in Edinburgh has spoken of how surgery to remove a brain tumour left her without childhood memories.
Tragically Weronika Fafinska has said that the cancer has now returned but that it is not at a size where surgeons are prepared to operate on it. The cancer has returned seven years after she had surgery to remove most of the initial tumour in February 2014.
In 2012, when she was just 12-years-old, Weronika was unable to hear out of her right ear and was taken for an MRI at the RHCYP. She was told at age 14 by doctors that she had a grade two brain tumour - diffuse astrocytoma.
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When she woke up from the surgery, she revealed that she was unable to identify her own parents, who were sat at her hospital bedside, STV reports. Weronika, who is now 23, said: “In the car going home, I was sick three times because, in my mind, I had never been in a car before. I was so scared because I didn’t know where I was going.
“When we got to the house, I didn’t recognise it. I didn’t recognise my bedroom, and I didn’t like anything in there, such as my clothes.”
She added: “I didn’t know what anything was. I didn’t know that an oven got hot, or what a football was, but I was able to pick things up, such as my maths timetables, right away.
“When I returned to school, there were hundreds of people and I didn’t know anyone, not even my closest friends.”
Her condition was said to be stable for seven years following the operation but in March 2021 a scan showed that the tumour had grown. However doctors said that it had not grown enough for an operation to be carried out.
But further scans in August 2021, March 2022 and August 2022 unfortunately showed that there was a slight continuous growth. Weronika is now faced with the precarious heartbreaking knowledge that her tumour is now growing again.
The 24-year-old, who lives with her partner Cameron Summerville, said: “The uncertainty of how it’s growing and if the treatment will work has really got to me this year. I’m having to think about things that normal 23-year-olds shouldn’t, such as is there any point in getting married, can I have kids and, if so, what will happen if I don’t win against my tumour?
“So, it’s a lot to deal with right now.”
For children and adults under the age of 40, brain tumours are the most deadly form of cancer, but it is understood that only one per cent of national funding for cancer research is spent on this type of the disease.
Weronika is remaining resilient, however, and is partnering with the Brain Tumour Research charity by undertaking their 100 Squats and Star Jumps a Day in November Challenge. She hoped to raise funds that will go towards better understanding brain tumours.
She continued: “I’m really looking forward to the challenge, but I haven’t been physically active for some time, so I am nervous to see how I will cope with it. I think I’ll do a combination of both squats and star jumps to allow my body to complete the full challenge for when I feel like one exercise is too much.
“I’m struggling right now to keep myself occupied, so I decided to take part in this to have a distraction and to boost my mental health in raising the awareness around brain tumours and remembering that there are charities like this that are trying to help people like me.
“Brain Tumour Research gives me hope that people are trying to find a cure and that will hopefully help save lives.”
Matthew Price, community development manager at Brain Tumour Research, said: “We’re really grateful to Weronika for taking part in the 100 Squats or Star Jumps a Day in November Challenge, as it’s only with the support of people like her that we’re able to progress our research into brain tumours and improve the outcome for patients like Weronika who are forced to fight this awful disease.
“I would encourage anyone who is able to take part in the challenge to do so. Not only is it fun, but it gets you fit whilst raising vital funds to help find a cure for brain tumours.”
The Brain Tumour Research charity has hubs across the UK and lobbies the government as well as larger cancer organisations to put funds towards researching brain tumours in the hope of speeding up treatments for patients and establishing cures. They are calling for an annual national budget of £35m to increase the chance of survival and positive patient outcomes as well as for greater repurposing of drugs.
You can visit their website here.
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