23-year-old shares her experiences of battle with brain tumour

Edina Szilveszter, of Orford, received the devastating diagnosis after suffering a series of seizures one night in May last year.

The 23-year-old was rushed to A&E, where CT scans revealed a tumour on the right-hand side of her brain.

For months beforehand, the warehouse worker had been telling friends that ‘something wasn’t quite right’ with her health.

But, having not displayed any typical symptoms of a brain tumour such as a headache or blurred vision, she did not seek medical attention before her collapse.

Now Edina is urging residents to visit the doctor if they have any concerns about their health – as it could save their lives.

She said: “Before the seizure, I’d never felt any typical symptoms of a tumour such as headaches or blurred vision.

“But I could just tell something felt off within my head.

“I couldn’t put my finger on it, but I would tell my friends and all of them knew I had these feelings.

“So whilst my diagnosis was an awful shock, I sort of knew something was happening.”

A week after being struck by the seizures, Edina underwent surgery to remove the tumour at the Walton Centre in Liverpool followed by extensive chemotherapy and radiotherapy with the Clatterbridge Cancer Centre.

Via the trust, the Hungarian national – who moved to the UK from Romania with partner Laszlo five years ago – received the support of a dedicated clinical nurse specialist, who was also on hand to tend to her emotional and mental wellbeing.

With her family being stuck in Transylvania during the coronavirus pandemic and Laszlo often having to work, this special help was invaluable – with friends also rallying round in her hour of need.

Edina added: “My surgery went well and I was discharged five days later, but that first month was tough – I was so tired, my vision was blurred and I was very emotional.

“Laszlo had to go back to work, but I was unable to do anything for myself – my mum had her flights cancelled to come and support me, so some friends moved in instead to help out.

“During that time, I felt so worried I would never feel normal again but I tried not to let Laszlo or my family know how I was feeling.

“If I was positive, they would be positive – I hid my feelings from them to protect them.

“When I do need to talk to someone, I have a dedicated social worker who rings me every week.

“My neuro-oncology team at the Clatterbridge Cancer Centre have been amazing throughout, right from the first consultation – they support all of us.

“My diagnosis has also been a trauma for Laszlo, but knowing I have someone on the end of the phone, whether it’s to help me when I’m feeling unwell or someone to express my feelings to, helps us both.

“Everyone at the hospital has been so nice, from the receptionists to the nurses and the radiographers.

“I also love chatting with the volunteers who would pick me up and take me to the hospital for treatment – I learn a lot from just chatting to them, and if I’m having a bad day their positivity cheers me up.”

Nearly a year on, Edina is ‘finding ways to be upbeat’ while early on in her treatment she had her long hair shaved off before donating her locks so that they could be turned into wigs for others.

She added: “I enjoy doing crafts and making things, reading and going on long walks.

“Putting on some make-up can also make me feel more like myself.

“One of the positives I’ve taken from all this is actually shaving my head.

“I used to have long hair, but after surgery, I found it so heavy and it was pulling my head.

“When I shaved it off, I felt reborn – I love how it feels, it’s been a good thing for me and I’m enjoying having much shorter hair.”

Edina and Laszlo

Clatterbridge staff also say that the emotional support offered by the trust and providing treatment in patients’ preferred settings is vital.

Clinical nurse specialist Jan Holding said: “With Edina’s family living so far away and unable to support her and Laszlo in person, our team have done everything we can to ensure they feel as supported and informed as possible during this time.

“As a clinical nurse specialist, we are always on hand for our patients.

“It’s part of our job to ensure that patients not only receive support managing their symptoms, but emotional and holistic support too.

“This helps our patients not only to go through the treatment, but to have the best possible quality of life and come to terms with such a devastating diagnosis.”

Consultant clinical oncologist Dr Shaveta Mehata added: “Whilst brain tumours are very rare, it is common for patients to not experience any symptoms.

“Unfortunately, brain tumours are often diagnosed in A&E as was the case with Edina.

“Treating and caring for patients with a brain tumour is very complex.

“We work closely with other hospitals across the region, such as the Walton Centre, and meet weekly to discuss each of our patients.

“It’s vital that we offer treatment and support quickly and in the right setting so that patients can benefit from better quality of life for as long as possible.”