How many stories of remarkable cancer recoveries do you hear these days?
You know, the ones where people were expected by their doctors to live for a short while and ended up living for a long while or fully recovering?
My sense is not so many.
This feels to be at the heart of the tragedy unfolding at the Foundation I helped establish. That work goes way back to the 16th September 1981 with the meeting of our first cancer support group.
On Thursday, 1st April 2021 Ruth and I completed the last residential program at the Foundation’s Yarra Valley Living Centre, then joined in a wake/celebration with the last of the staff, closed the doors and walked away.
Now… where will people go who are seeking help to accomplish something quite difficult and so important?
And, maybe some would rather I did not ask this question – but has the slowing down in stories of remarkable recovery over the years played more than a coincidental role in the Foundation’s demise?
So this week, some reflections on a glorious history, some speculation on what happened, and a look to the future, but first, and in the spirit of Easter, transformation and resurrection…
Thought for the day
Contemplation is the only ultimate answer
To the unreal and insane world That our financial systems,
Our advertising culture,
And our chaotic and unexamined emotions
Encourage us to inhabit.
To learn contemplative practice
Is to learn what we need
So as to live truthfully and honestly and lovingly.
It is a deeply revolutionary matter.
Rev Dr Rowan Williams, former Archbishop of Canterbury
The Foundation began as the Melbourne Cancer Support Group.
We met in rented premises in Hawthorn, a leafy suburb of Melbourne.
The offering was a 12 week, non-residential program that had the stated intention of helping those attending with their quality of life but was really focused on teaching people how they could best become actively engaged with their own recovery.
In those early days, the basis of the program – meditation, therapeutic nutrition and positive thinking was far from mainstream and so we tended to attract a lot of people who had tried all the other options.
We began as a place of last resort.
But also, in those days cancer medicine was pretty blunt.
People were often told by their doctors quite literally, “There is nothing more we can do for you. Go home, put your affairs in order, make the most of your time left, and when things get really tough come back for Palliative Care”. It was often that blunt. Apart from anything else, the lack of compassion and consideration in the communication was often staggering; as well as very damaging.
What did happen, however, is that people were presented with a stark choice. Do nothing and probably fulfill the expectations of dying; or try to help yourself.
So the people who did find their way to our groups, came highly fearful, and highly motivated. And yes, my own story of recovery inspired them and offered hope; but once they heard the rationale around reactivating and utilising their own inherent healing potential, that hope became genuine hope. They really understood what was possible.
In those early days there were many stories of remarkable recoveries.
We published two books featuring the stories.
Disappointingly, and rather surprisingly, those recoveries were commonly dismissed rather quickly by the medical profession as so called “Spontaneous Remissions” and despite our best efforts, no significant research followed.
Yet our participants felt there was nothing “spontaneous” about these remissions! They worked hard; meditating regularly, changing their diets, juicing, working on changing mental and emotional habits, training their minds in Mind-Body Medicine.
And yes, of course many also died, but they had “good deaths” and they and their families rarely expressed regrets.
Their families often felt they became much closer and learnt of life in profound ways courtesy of the illness and the program.
So the groups grew rapidly and we expanded into prevention work and the wellness domain. The Foundation became a legal entity in 1983, I left my veterinary practice around the same time and the work attracted great support from new staff, many volunteers, donors and the media.
However, there was a strong undercurrent of opposition from the medical profession, in large part due to the fact we were helping to change a paradigm.
Up until the ‘80s, and as a generalisation, medicine was based on the notion that people got sick, they went to their doctors who were revered almost like Gods, they were diagnosed and told what to do and they did it.
Very few questions.
The doctor took care of things; our health was in their hands.
They were responsible.
As the new kids, we encouraged people to ask questions. Lots of questions. We encouraged people to take an active part in their own health; particularly when diagnosed with a major illness like cancer. We respected the doctors a great deal – after all I had worked in an allied field for many years as a veterinarian - but we did not go along unquestioning with whatever was said. We encouraged patient empowerment and we were active at a time when the doctor/patient paradigm was indeed changing.
But it was also the time when the whole notion of self-help techniques was coming into play. We based our program on the notion of reviving and stimulating the individual’s own immune system through a fairly intense self-help, lifestyle-based program. Significantly, this focus on the immune system became the basis of much of the medical criticism of our program as in those days the medical consensus was there was no way the human immune system could contribute to recovery from cancer.
Similarly, prior to the ‘80s, the notion that nutrition could play an active role in any therapeutic situation was pretty well unheard of.
In cancer medicine, using nutrition therapeutically was laughed at by the authorities.
This always staggered me. As a veterinarian, nutrition was one of the first things we always investigated when considering the cause of illness and how best to effect a recovery. In agriculture, the soil is essential to healthy plants. By contrast, Medicine carried on in those older times as if what people ate was completely irrelevant, and the fact we strongly advocated what people ate matters a great deal led to some interesting interactions…
Then too, we were advocating the therapeutic application of meditation and other mind techniques. In those early day there was nothing like the huge body of supportive research that currently exists. It was also a time when the practice of meditation was heavily overlaid by its associations with exotic, and in the public’s eyes, probably mischievous eastern gurus. So quite a few more interesting interactions with cautious or full-on reactionary authorities…
More context. Some decades back the cancer world went through another seismic shift.
Mainstream cancer medicine transformed Palliative Care into Palliative Treatment.
Instead of palliation being about accepting people would die and helping them to make the best for the time available and to be as comfortable as possible, it became a fertile ground for new drugs that while not curing might extend life.
These new drugs frequently came with a high price tag – so the public valued them – and often were accompanied by significant side-effects – which the public seems to have accepted.
As a consequence, cancer very much became a chronic illness to be managed in its entirety by the medical profession and its allied health workers.
No longer the “go home a die” message; now a new emphasis on treatments that while they may not cure, will prolong life. Those palliative treatments have become increasingly expensive – some are now over $200,000 per person per year, and the public seems very pleased to have them available; many being provided virtually freely courtesy of the PBS.
And another paradigm shift.
Cancer medicine has largely moved on from the old stalwarts of surgery followed by radiation and chemotherapy.
There is now much less chemo and far more immunotherapy.
Yes - Immunotherapy that was once dismissed, now seems to be the great new hope.
Yet curiously, all the research goes into new immunological drugs and hardly any – if any at all – into investigating the real therapeutic potential of a program like ours based upon self-help techniques.
So the observation?
In the early days we helped many with medically incurable disease. As our work became better known, we also attracted many with medically manageable cancers who wanted to learn how to give themselves the best chance of recovery, as well as learn through their illness.
For this is what cancer does.
It is such a tough and demanding illness, that for those who look into its meaning in their own lives and the lives of those they care for; it causes them to examine everything.
It may sound strange, but without doubt, cancer is one of the best personal growth opportunities around. (Hope the growth reference is not too much like a bad pun!)
And in my view, the very best way to explore this aspect of a cancer diagnosis is with your partner in a residential program designed to facilitate that process.
So back in the ‘80s and ‘90s we heard many personal “anecdotes” of people transforming their illness and their lives – both physically, emotionally, mentally and spiritually. That was what that program did. It was genuinely holistic. The program evolved over the years, courtesy of the expertise and insight of great staff. This was complemented by the learnings gained from so many incredible participants and it was supported by incredible volunteers, Boards and donors. The Foundation was very busy.
So what happened?
Really want to know? Hard to be sure. It is complex, but my own sense is as cancer medicine changed, as these paradigms changed, the Foundation did not adapt all that well.
In the new millennium, patient empowerment became a thing. Communication training in oncology began to improve doctor/patient relationships. Mindfulness was branded as an acceptable, secular word for meditation. Research exploded and gave the evidence base required for mainstream authorities to advocate it. Nutrition was increasingly recognised to be relevant. Attention to emotional and mental health became strong domains in new cancer centres where an “Integrated approach” was touted as a major marketing focus.
Now, and for some time past, many hospitals run their versions of support groups, their offerings of mindfulness and meditation programs.
Many individual components of the Foundation’s program are offered locally by groups and individuals and as a consequence potential clients actively question the need to travel to a residential centre.
Then too of course, so much is available on the internet.
In the early days, people came to our programs to gather information. Information was hard to find, and we accumulated and shared it. These days, people come to the groups to debate and to filter information. But VERY significantly, they have real trouble working out who is telling the truth. “Is soy OK? My naturopath who I see weekly says it is dangerous, yet you who I have come to for this program and have been working and researching in this field for nearly 40 years say it is OK. How do I deal with that?”
So for the Foundation, in recent years there has been a shift from where we were one of very few centres in Australia, even the world, that could offer this information let alone run a genuine integrated program to help people learn and implement it; to now being one of a large number of such groups and individuals – all of varying content and quality.
And the paradigms have changed. These days not so many people with cancer feel there is nothing that can be done for them medically; they are fully engaged with Palliative Treatment. So they tend to regard the self-help options as somewhat soft add-ons; not like the crucial, life-saving major focus of people in earlier days.
This then may be the tough bit.
In cancer medicine, remarkable recoveries do not come easily.
In sporting terms, they represent fairly elite achievement.
Clearly if recovery from difficult cancer was easy, when it happened it would not be regarded as remarkable.
In the earliest days of the groups, and faced with no other options, people were highly motivated and worked at their health in the manner elite athletes might. They were committed, single-minded. They did their very best, and many did accomplish remarkable outcomes.
Now I need to be clear.
Many of those early people did a lot and died of cancer anyway. And why some experienced remarkable recoveries and lived while others did very similar things and died often seemed a mystery to me. But what I can say is those who applied themselves fully never expressed regret to me. On the contrary, they rejoiced in having given it their best, and while naturally disappointed, if cancer did still end their lives, they were content and invariably experienced what those around them described as a good death.
So in current time, my experience is there seem to be few who have that same high level of commitment. Many want to benefit from dietary change, from training their minds, becoming more mindful, meditating and so on, yet there is not the same edge to it. Often there is a half-heartedness. Often too, there is a background of uncertainty that is hard to shift. “Am I doing the right thing? Am I doing enough? Who do I trust? What do I make of all the options coming my way through the medical profession, the internet, family and friends?” There is not the same thoroughness. The nature of the groups has changed, the conversations have changed; the work has changed, what people do has changed.
This approach has become less like an elite sport, to more like a weekend run around the park. Useful, but not quite the same.
Actually, having said all of this, in my view, the Foundation’s current cancer programs seem to be doing really well in adapting to the changes.
In my view the basic cancer residential program remains the Gold Standard.
I know of no other program so complete or so well presented anywhere in the world.
Big claim? I believe it to be true.
So why is the centre closing?
Who knows really, but where they may well have fallen behind is in helping the public to value the program. To value it enough to come; to value it enough to support it financially and in other ways. But then what would I know? Having not been on staff or on the board for 12 years, I really can only celebrate the fact of all the good work done over the 40 years of the Foundation’s history; these last 12 without me.
What comes next?
My guess is something will arise like a phoenix.
In the interim, there is every possibility the cancer programs will continue to be presented by the current group of therapists – either at the YVLC under someone else’s management or elsewhere.
Regarding the other spheres of activity the Foundation has been involved in, many people present meditation programs and retreats and the Overcoming MS people are presenting the MS program and providing great support for people affected by MS. All of that work is well catered for.
And the fact so many hospitals and community centres, schools, prisons and work places have these techniques embedded in their way of functioning, is heartening indeed.
People are asking about what next for me?
There are 3 major projects
1. In all probability I will be on the advisory boards to help develop and support the Centre for Contemplative Studies at University of Melbourne, and the Centre for Consciousness and Contemplative Studies at Monash. With the Centres now funded for 5 years, these projects are in full swing.
2. Development of the Agape project to provide ready access to a residential meditation and Perennial Wisdom-based program designed for young people, This project has been developing over the last 3 years and will likely ramp up in the second half of 2021.
3. Development of the Allevi8 app and its mentor program. Allevi8 has been available for around 9 months now. It provides relaxation, mindfulness and meditation practices for people affected by significant physical or mental challenges. We are about to release a mentor program that will provide a 12 week on line, one on one meditation program where participants will be taught personally and supported to establish and develop their meditation practice.
So all in all?
There is an air of tragedy in the closure.
But so much to celebrate.
All the lives transformed – both in participants, staff and volunteers!
So much good work done.
So much to delight in.
Maybe even a contribution in changing a paradigm or two…
A big thank you to all who contributed.
Many supported me in a very direct way; many more supported the work and all the other extra-ordinary people I was so fortunate, so blessed to engage with...
Life is change…
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Yarra Valley Living Centre is closing
