Thoughts on the Brain Tumour Forum

I attended the annual Brain Tumour Alliance Australia forum yesterday, in Sydney. On stage was a plethora of brilliant minds, caring souls and with it, a potpourri of information designed to either educate or bewilder the audience.

I sat next to an Oncology Psychologist, a field of study that fascinates me but to which I would be wholly unsuited, she took notes like an excited student, obviously intent on garnering as much information as she could. She told me, when I asked her, if she understood most of what was being said, about neuro pathology, clinical trials, experimental drugs, immunology, epidemiology, various other “ologies”, and strands of research that is being carried out in the name of finding out not only cures for various types of brain tumours but causes. She said that she did. I didn’t doubt her for a minute. There was a lot of information to absorb, from the first speaker to the last, not all of it, in my view, relevant to me, or indeed to the wider brain tumour community, but informative nonetheless.

I was bombarded with information about brain tumour pathology, how a tumour is identified, how it’s measured, graded, analysed and treated. The second speaker, a research professor, made me sit up, with her various accounts of treatments, research findings, her tales of funding shortfalls into areas badly in need of a boost and her honesty about where research into brain tumour cause and cure is currently at. She bamboozled me with the science of it, I felt as though I’d mistakenly found my way into a first year university Science lecture theatre, I kept looking at my friend next to me, frantically taking notes. I tried not to feel guilty for appearing bored. I knew that if I was ever examined on the presentation I’d have to offer her a bribe, or steal her notes. I was astonished at the professor’s knowledge and expertise. I admired her directness, her honesty about where brain tumour research sits in the national health care pecking order and at her willingness to offer a solution.

I was interested in what she had to say about these subjects, but it was when she mentioned the philosophy behind a form of research known as Australian Genomics and Clinical Outcomes of High-Grade Glioma (AGOG) Epidemiology that made me think that perhaps I hadn’t walked through the wrong door. This strand of research seeks to determine the causes of brain tumours, specifically Glioma but certainly transferrable to other types of tumours, where factors such as illness history of the patient is examined, including previously vague illnesses, such as depression, which might contribute to brain tumours developing. I whispered an aside to my obviously more engaged and switched on psychologist friend in the next seat, and added that ‘perhaps even stress is a factor in developing a brain tumour.’ She nodded, in appeasement or agreement I don’t really know, although I’ll plump for the latter.

I proffered the view, structured as a rhetorical question, that third world peoples don’t get brain tumours in the numbers that we Westerners do, with all our worries about mortgage repayments, retirement savings, housing affordability and the curse of getting ahead. Perhaps I was subliminally searching for a rational explanation as to why I got saddled with one, although I have tried to minimise my stress levels over the years and figure it’s one of my few genuinely successful ventures. I think I was asking on behalf of the beleaguered proletariat.

The panel conversation that followed, which included the aforementioned speakers, and other eminent practitioners, a neurosurgeon, a radiation oncologist and a medical oncologist no less, where the issue of funding brain tumour research in Australia and its summary contradictions surfaced, had the room almost jumping. We suffer in this country, the prevailing view seemed to be, from a lack of will at the government level, to set aside any more than an amount of money that does little more than pay lip service to those world class scientists, some of whom were sitting in this very room, and people who will suffer from a brain tumour in the future. An opinion was expressed, steeped in pragmatism, that this parlous state of funding was unlikely to change, that we should be looking to the corporate world, and to philanthropists, to fill the void. We should, it was emphasised, still be making life as difficult as we can for politicians of all stripes.

We then had lunch. I gorged on excellent sandwiches. During lunch I met a charming woman who told me she had surgery for a Glimoblastoma Multiforme (GBM) only last September. She looked like a vision, I told her so. I was humbled by speaking to her.

The following speakers, I’ll be frank, left me a little cold but that’s just me. The speaker after lunch, the medical oncologist on the aforementioned panel discussion, a patently outstandingly credentialed doctor, made me feel as though I was back in the first year university Science lecture I had no right in attending. I admit to a failing, I didn’t try and connect with his presentation about clinical trials. Clearly my studies, over the years, which have studiously avoided the useful sciences, came home to roost.

I anticipated the final speaker, a rehabilitation professional, taking a wild swing at the issue of support for brain tumour patients, how we go about the tricky subject, how we equip ourselves for it, but I admit to being underwhelmed. I wanted him to dive headlong into discussing how we can help patients cope, recover, deal with the pain, the uncertainty, the loneliness and whilst I got information I didn’t get insight.

The best part of the whole event? Firstly, the realisation that we have in this country, let’s not forget, exemplary medical care but also brilliant minds working at ways to make it even better. Secondly, meeting inspiring people who came to contribute, to listen, and to learn. And perhaps, in meeting these people, I could go away with an overwhelming desire to make some sort of difference.