(For treatment side effects and complications only)
Posted 26th March 2021
A 23-year-old warehouse worker from Warrington diagnosed with a brain tumour had been telling friends for months that something wasn’t quite right.
Edina Szilveszter’s diagnosis came after she suffered a number of seizures one night in May 2020. She was rushed to A&E where CT scans and checks discovered a tumour on the right hand side of her brain.
“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.”
Just one week after her diagnosis, Edina received surgery to remove the tumour at The Walton Centre in Liverpool, followed by extensive chemotherapy and radiotherapy at The Clatterbridge Cancer Centre NHS Foundation Trust. Through the Clatterbridge Cancer Centre, Edina also received the support of a dedicated Clinical Nurse Specialist, who works to not only manage a patient’s symptoms but care for their emotional and mental wellbeing.
Originally from Hungary, Edina and her partner Laszlo moved to the UK from Romania five years ago. With Edina’s family back in Transylvania, she relied on friends for support whilst Laszlo continued to work.
“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.”
Edina also felt a lot of comfort and support from the wider team at The Clatterbridge Cancer Centre.
“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.”
Edina’s Clinical Nurse Specialist is Jan Holding. Jan 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.”
Dr Shaveta Mehata, Consultant Clinical Oncologist at The Clatterbridge Cancer Centre NHS Foundation Trust, is leading Edina’s care. She said: “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.”
Despite her diagnosis, Edina is finding ways to be upbeat. “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.”