Event Topic:
As requested by members of the Brain Tumours Online Community, we invited three wonderful people who are long-term survivors of high grade gliomas to share some of their personal experiences and stories of hope with you.
About the speakers:
This webinar was hosted by Prof Kate Drummond (Head of Neurosurgery at the Royal Melbourne Hospital, and the project lead on the Brain Tumours Online project), and she was joined by Brendan, Tarsh and Taigh, three people who were diagnosed with high grade gliomas and have gone on to live long lives, well beyond the ‘average’ survival time.
Please note: As Brendan preferred to have his camera off during the webinar, you can hear his responses to the questions but you can’t see him in the recording. The other three speakers (Kate, Taigh and Tarsh) had their cameras on, so you can see and hear them in the video.
Excerpt from bios provided by the speakers:
Tarsh:
“After having a grand mal seizure in a gym whilst hanging from a pull up bar, I was diagnosed with a GBM grade 4 in April 2000 at the age of 24. On the first of May 2000 I had Neurosurgery at St Vincent’s Hospital in Melbourne. They removed 2/3rds of my tumour in the left frontal part of my brain. I then went on to have Radiotherapy and Chemotherapy (BCNU). I continue with yearly MRI scans at the Royal Melbourne Hospital, there have been no changes in my scan since 2013.
After surgery I lost the use of my right foot and had a brace for a while until I started back swimming and regained the use of it. Over 3 years, from memory, could be less, the tumour was not visible on MRI scans.
I am 48 and going into my 24th year as a GBM survivor. I have a beautiful son who is 16 and is the light of my life.”
Brendan:
“I was 46 when I collapsed from a grand mal seizure in my office early on the 11th of August 2004. The next thing I remember was looking at my feet being pushed through the doors of the RMH. A diagnosis of an anaplastic astrocytoma (grade 3) was established and a craniotomy was carried out on the 20th of August. Recovery was poor. Given only 12 to 18 months to live. No chemo but 40 shots of radiotherapy given. Hard to believe that I have survived 19 plus years. During that time I have collected two primary melanomas, aggressive prostate cancer and had a loop recorder inserted in my chest for a slightly irregular heart rhythm. Still open to collecting more cancers!!”
Taigh:
Taigh recounted to us how one day he had been feeling “tired, dog tired” and was experiencing “very odd behaviour for me”, and when he got home he realised something needed repairing on the shed roof. He got a ladder to climb up and fix the problem. “My neighbour had a water tank adjacent to my fence. A good job he had a lid on his tank, because I blacked out, and would have fallen into the tank and drowned…anyway I woke up between the water tank and the fence…my wife called an ambulance…and they took me to Royal Melbourne Hospital, and told me I had had a seizure”. He had a brain scan followed by surgery, then rehab, radiation and chemo. “I didn’t worry about my brain cancer anymore, because I said to myself that I didn’t have it anymore. I did not really accept that I had a year or 18 months to live”…and 10 years on…“I have regular meetings with a doctor who told me that although one bit of my brain was missing, it seemed to be alright….I try to exercise as much as possible and I think that this helps a lot, and it makes me happy. I try to do things that make me happy, like when the Irish rugby team win or when the bombers win. Or keeping in touch with old and new friends. I guess that’s how I muddled through and got through it”.
What time was the webinar held?
This webinar was held at 1-2pm (AEDT i.e. Sydney/Melbourne time), on Monday 12th February 2024.