A young woman from Edinburgh shares how after she wasn’t able to walk in a straight line she was diagnosed with an aggressive brain tumour.
Alex was diagnosed with stage four medulloblastoma in January 2023 after suffering extreme headaches and issues with her vision at the end of 2022. Since her diagnosis, she has undergone four surgeries, seven weeks of radiotherapy and almost a whole year of chemotherapy. The 32-year-old, who preferred to keep her surname anonymous, recently finished chemotherapy in April shared that she felt "really tired" and suffered extreme headaches before her diagnosis with the malignant cancerous tumour.
Alex moved to Scotland from Poland 13 years ago to study in Aberdeen and met her partner from Fife and plans to move back home were soon forgotten about. During a trip to Maggie's cancer centre at the Western General Hospital - a vital safe space and hub for those living with cancer to receive expert advice and support Alex spoke to Edinburgh Live. The centre provides regular courses and sessions for patients to understand their condition, and welcomes their friends and family who have questions about the life-changing illness.
She shared the symptoms she experienced at the end of 2022, Alex said: "I was really tired and started getting excruciating headaches. Towards Christmas time I was on annual leave from work and gradually started losing my balance, I couldn't walk in straight lines.” She added: “I am in my early thirties and just assumed I was tired and stressed - I never thought it would turn out to be something so serious.”
After being unable to get a GP appointment, one day Alex collapsed in her flat and couldn’t get up and ended up phoning 999, this is where her journey began. Alex said: "When the symptoms started the headaches were like a ceramic bowl bursting around my brain - it was absolutely awful. I couldn't get my balance right and was tripping over things.” Alex said she didn’t drink much and maintained a healthy lifestyle however things escalated after her vision started getting blurry. She eventually booked an appointment with Specsavers, but her pain became so severe that she had to go to A&E before it came around.
Alex underwent surgery to remove cerebrospinal fluid from her head and was given steroids before having three more surgeries to remove a brain tumour and deal with complications. When she was told that her tumour was cancerous Alex said she "couldn't believe it." She added: "It was a big shock for everyone. My family came over from Poland straight away. I couldn't comprehend what was happening and what it meant for my life. I knew it was aggressive but the nurse took me to Maggie's and I just cried.”
Alex says attending Maggie’s was the only positive experience when she went to hospital. She said: “Maggie's have been amazing. The first day I came here I got signed up to a couple of groups and provided space to talk and hope.” She has been attending a brain tumour support group which has been a big help for her.
In 2023 Maggie's had more than 310,000 visits including online and over the phone across 24 centres in the UK - with the first centre opening in Edinburgh in 1996. Maggie's Chief Executive, Laura Lee was awarded a Damehood in 2019 for her services to people with cancer. The centre also provides a seven-week course called Where Now? to assist anyone who has finished cancer treatment and help them resume as normal a life as possible.
Lesley Howells, Maggie’s Lead Psychologist, says: “Maggie’s really has been a pioneer of providing support for people post-treatment. We first started developing Where Now? 15 years ago, after our Chief Executive Laura Lee spotted a need for a course which helped people to adjust to life once they have left the endless round of appointments and treatments.
“Regardless of prognosis, life post-treatment can be hugely challenging. Many people are left with physical and emotional side effects which can impact the quality of their lives, while for others though it can simply be about readjusting to normal. Maggie’s Where Now? course can help with many aspects of this.”