The Brain Tumour Alliance of Australia keeps me informed as to what brain tumours mean for most people via a magazine and it was they that also informed me of the Brain Tumour Forum at Sydney Royal North Shore hospital held in early March. Not really my kind of event I figured, relevant to me and yet somehow not with me having thus far eschewed the unholy trio of surgery, radiation * and chemo * that is such a gathering’s central dogma; my relationship to such an event was rather like that to a pentecostal church – I’m all for the religious experience and any gathering that seeks it yet this particular one is just not my preferred flavour. Then I read the schedule. While the Dutch world expert on brain tumours was unlikely to share anything I did not already know – which proved true – there were two gentlemen who may well do. Matt Pitt is the chair of the Brain Tumour Alliance of Australia and a survivor of an astrocytoma diagnosis 10 years prior. It was amusing to hear him share how he was/is a very negative person and this has only changed somewhat. Most interestingly he spoke of his depression post-diagnosis and how it lifted when he began helping others; as so many have discovered, it is truly in giving that we receive. Clint Beattie was diagnosed as a young boy and has endured 14 brain operations and two years on a chemotherapy drug. He was present to sign his book, ‘Into The Light’, and I enjoyed hearing about his journey and the role of his Christian faith in his journey. In a similar fashion to myself, albeit with differing specifics of belief and so forth, it seemed Clint had made sense of the experience through placing it and his life in a larger context. It is, is it not, the only way one can make satisfying sense of one’s existence at all?
Bizarrely as I entered the forum I was offered a goodie bag much as at a children’s party or more typical conference. I declined although am curious now as to what was in there beyond the lime green fluro baseball cap (to cover the scars?!).
The auditorium was a mix of carers, patients and professionals and the occasional scarred and semi- shaved head and a lady unsteady on her feet reminded me how fortunate I am to be symptom-free. The presentations began with a lady who had lost both her sister and brother (very rare) to brain tumours and spoke of the importance of meditation – so far so good! It was all very enjoyable and the Dutch guy rubbished some US research on chemo drug efficacy however it was the detail of study design he questioned rather than the use of a carcinogenic substance that causes massive suffering and is hugely ineffective/profitable in the first place.
The most interesting moments for me came when Clint asked about alternative treatments. The female neuro-oncologist was a little defensive when she cited the usual, and false, ‘no evidence’. Indeed, perhaps sensing the insubstantiality of her position , she mentioned a study where high use of anti-oxidants actually caused worse results for those that received the high dose than those who did not. So, she clearly implied, one might actually worsen your condition going down the alternative route. She failed to mention the drug company’s own studies showing a 2.1% efficacy in extending life expectancy (http://www.oasisadvancedwellness.com/learning/chemotherapy-effectiveness.html) that considering the big pharma industry’s motivation and proven record for massaging the stats (they are more likely to drop negative studies than independent researchers) probably, in fact, and according to Australian expert Dr Ian Gawler, represent an increased likelihood of dieing within 5 years if you undergo chemotherapy than if you do not!!
So I asked a question, phrased carefully and in response to the female neuro-oncologist’s shaky stance. I felt perhaps as I would at the aforementioned church asking the pastor how could their God be truly loving and at once send you to eternal fiery damnation for not believing fearful proclamations of disproven, illogical myths. Hopefully they could not tell I was a non-believer with the following – ‘bearing in mind the huge amount of data showing the general positive effect on health of good diet, meditation, exercise, joy and minimised stress why is, that in the case of such health crises (as cancer) we do not first advise patients to get these areas of life in order?’ Perhaps deliberately misunderstanding the question – for there is no logical and reasonable answer -she replied they simply could not afford to offer meditation classes (which I doubt to be true). I pointed out I was referring simply to providing accurate information, advice, not any additional service. Her response was so vague as to hardly be called a response; vague enough that it was clear she had no answer.
Could it be, just possibly, at least related to the $12 billion annual profits from chemotherapy alone and the concerted multi-billion dollar marketing, both overt and less so, aimed at maintaining the status quo and the lack of patents/profitability of vegetable, meditation and jogging? It was the question I would have liked to ask however we were out of time.
I am grateful for the forum , for the presenters and the good intentions of the professionals present and more grateful still that I have been blessed with a broader context and deeper truths surrounding healing and wellbeing.
* neuro-oncologists tend to prefer the words radiotherapy and chemotherapy however when I see the definition of ‘therapy’ (see below) and the stats on each the abbreviated versions seem less misleading
1. the treatment of disease or disorders, as by some remedial, rehabilitating, or curative process: speech therapy.
2. a curative power or quality.
4. any act, hobby, task, program, etc., that relieves tension.