Brain cancer is a complex disease often with few symptoms or risk factors.

48-year-old Simon Harrington is keen to share his experience living with glioblastoma in the hopes this would raise awareness of the disease and provide support to other patients and their family members.

Simon has a grade four glioblastoma which is the fastest-growing and most aggressive type of brain tumour.

Originally when Simon started experiencing symptoms in October 2021 doctors thought he had epilepsy.

“It was subtle symptoms at first, I found myself muddling my words, repeating myself and unable to find the word I was looking for, then I began having seizures,” Simon said.

“One morning I woke up and felt sick to my stomach, I knew I needed to take myself to the doctor and they immediately ordered an MRI and I was referred to a specialist at Briz Brain and Spine.

“I was officially diagnosed with a grade four glioblastoma in December 2021 and immediately had surgery to remove the tumour.”

Simon explains the doctors had a clear and aggressive plan for his treatment.

He was to have surgery with Neurosurgeon Professor David Walker followed by six weeks of radiation and chemotherapy supported by Medical Oncologist Dr Adam Stirling and Radiation Oncologist Dr Tuan Ha.

Simon’s care was managed by Vivien Briggs a Neurosurgical Nurse Practitioner who works with patients undergoing treatment for brain and spine tumours during all stages of their journey.

“In the early stages, patients may have symptoms like headaches, dizziness, nausea and vomiting.

“The tumour location may also cause seizures or visual disturbances, speech problems, weakness or changes in sensation involving their face, arm or leg,” Vivien said.

“They may also present with personality changes, confusion or memory problems.”

Simon said having Vivien to support not only him but his wife Adele and their son during this period has been invaluable.

“I don’t think we would have made it through this experience without her, when we first met her I remember she said, ‘you’ve now got me forever she was in control the whole time’,” Simon said.

“She was particularly supportive of my 12-year-old son, explaining the situation to him and helping him to understand what was happening.

“One of the most valuable things she did for us was to get psychology sessions which has helped to alleviate some of the stress we have been under.

“She has been incredible and I honestly wish we could clone her,” Simon said.

Once he was finished his first round of treatment Simon needed another surgery in September 2022 as the cancer had reappeared.

“This time I developed a brain infection and was in hospital for another five weeks, I felt truly awful in that time,” Simon said.

Today Simon is out of hospital and enjoying spending time with his family and says he has good days and bad days.

“One thing that keeps me going is my love of music, I love heavy metal music and as I have lost the ability to read and write it’s a good distraction and it keeps me going,” Simon said.

“I’m not able to get out and about as much as I would like to, but I enjoy spending time with my friends and family.

“My wife Adele has been incredibly supportive through this whole ordeal, we value the time we get to spend with each other.”

Simon said despite the fact that much of his family live in New Zealand he is lucky to have such a great support network around him here in Brisbane.

“I do feel for those people who don’t have anyone with them which is why I think it’s so important to have a good care team to watch out for you,” Simon said.

“I want people to talk about glioblastoma, it’s a terrible disease to have but it is important to raise awareness, if there is one thing I want to do it’s help other people with brain cancer.”