Brain Tumour Awareness Week

by Oct 27, 2017Uncategorised2 comments

"Hope is an orientation of the spirit, an orientation of the heart...

It is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out.” Vaclav Havel.

I attended a conference this week, one where my qualification enabling me to be there was that I’m a brain tumour survivor. COGNO, it’s a grand acronym to be sure, stands for the Co-Operative Trials Group for Neuro Oncology, held in Melbourne, conveniently enough, during International Brain Tumour Awareness Week.

The combined intelligence in the room, if collated, harnessed and turned into energy, would power a small nation for a very long time. I was there as a representative of the national brain tumour support group that I’m now a committee member of, Brain Tumour Alliance Australia (BTAA). It was reassuring to know that medical professionals, scientists and brain tumour patients alike are glad we are around. Information overload, it’s fair to say, was a given, particularly for me, in this environment. I loved every mind numbing, head spinning, minute of it.

I had conversations over lunch, tea and cake that I’d never have had, had I not had a brain tumour and determined, as a result of it, that I wanted to make some small difference and play some small part in helping others along the brain tumour journey.

I learned, from an eminent American neurosurgeon, about advances in minimally invasive endoscopic surgery. The idea behind using the endoscope is that the surgeon can now see deep into the cranium, deep into the tumour, during surgery, significantly improving clarity and precision. Even further advances are being developed. I cornered this neurosurgeon who had explained this technology and technique, he was one of the conference’s key note speakers, after his talk, and told him that I wasn’t the least bit squeamish about watching video footage of his operating deep inside a patients brain. I am after all, the son of a country vet, there’s not much I haven’t seen. Neurosurgeons are not only highly skilled, they can be, as he was, highly engaging.

I approached him again at lunch on day two and offered a theory. It goes something like this. The surgeon, who tidies up the brain at the conclusion of surgery, does so, knowing that they are handing the patients healing and recovery over to the incredible healing power of the human body and the immense strength of the human spirit, that they can do no more. This self evidently highly skilled, respected and accomplished surgeon acknowledged the truth of my theory, adding that healing very much depends on the strength of the human spirit. Neither of us were suggesting for one minute that we can all just go about healing ourselves, surgeons are remarkable people with a special gift but we underestimate sometimes the role we ourselves play.

I chatted to a doctor who is going to be at the forefront of a new $68M dollar Federal Government investment into the next generation of radiotherapy, Proton Beam Therapy. He talked about how important offering support, our raison detre, to patients is in that process. He looked too young to hold such a position, the elan, training and intellect that he had oozing out of every flank and gland, the confidence that he was going to make a real difference in peoples lives. We ran into each other while I was giving my head a break, from having to adjust my double vision looking at too many overheads and he, as he was walking in just prior to delivering his address. He approached me, this most engaging of doctors, asking me if I knew anything about his work. I felt like a child at a circus, it made me smile that I could talk to him at a level that made us both admire each others work, although he, without a doubt, has more to back him up.

I learned about developments into new drug treatments, new combinations of treatments, advances in pathology practices that went far beyond my pay grade. Much of it is nascent, some of it well developed and established but all of it exciting and promising to this soul, trying to understand a skerrick of it, so as to prevent complete embarrassment if ever I was tested on any of it.

My wife Katrina flew down for part of it and accompanied me to the dinner on the second night. She introduced me to the head of development for the Cure Brain Cancer Foundation, who happens to be a dual Olympian, a former champion triathlete, who wanted to hear my story. Her husband too, has a brain tumour, and she, remarkably, has picked up the gauntlet and is advocating on his behalf, just as my wife advocates on my behalf, although in different ways, like so many of us fortunate enough to have resolute and unwavering carers. She understands the role exercise can play in recovery and so I offered to show her my stationary bike setup, something that her husband may be interested in.

I had lunch with a molecular biologist, I really did get around, who is doing ground breaking research into how mutations that lead to cancer can arise. He mentioned how good it would be to have a brain tumour support group set up in his city, he loved the idea of it, that there is support for people in the midst of this journey. We made arrangements to try and make this come to fruition.

There was even a session on the role exercise plays in both prevention and recovery, of cancer, in all diseases if we are honest with ourselves. Yes, the subject raised my heart rate, I realised that I have been doing something right all these years and recent months, that the hours on the bike, training for something transient, was preparing me for something much more magnificent than a trophy to plonk on the mantlepiece. These people I met, passionate, intelligent beyond measure yet eager to find out more, made me feel for these few days that I shared a large room with them, that we are all making some kind of difference and that breakthroughs might not be as far off as we once thought.

I was, by the end of it, both exhausted and invigorated. I even bought some shoes, a book and some coffee beans. Melbourne has something about it I like. What a privilege it was to be able to stick my head through the door.

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Alice Parsons
28 October 2017 7:23 PM

Thank you for such a brilliant digest offering hope and spotlighting what an amazing crew of caregivers and professionals out there ever aiming to understand and hopefully ultimately subvert the power and unknowability of brain tumours.

Julia Robertson
30 October 2017 10:58 AM

Well written Stephen. It was lovely to meet you at COGNO and I look forward to seeing more of you at BTAA