Cancer-management-36-years,-4-big-changes-and-some-recommendations

Last week Ruth, Julia Broome, Siegfried Gutbrod, Michael Johnson and myself, along with the excellent team at the Yarra Valley Living Centre, presented the last cancer residential program of my working career.

The first cancer program I presented was at the Melbourne Cancer Support Group in Hawthorn, 16th September 1981.

During the intervening 36 years much has changed in the cancer world, especially for those directly affected; the patients.




So this week some observations around the biggest of those changes and some suggestions, but first


Thought for the day



Every public action which is not customary,
Either is wrong,
Or, if it is right,
Is a dangerous precedent.

It follows
That nothing should ever be done for the first time.


Francis Cornford, academic



FOUR BIG CHANGES 
that directly impact people affected by cancer in 2017 compared to 1981

1. Information has moved into overload
BACK THEN
In 1981 there were very few cancer self help books. A couple on nutrition, Ainslie Meares’ Relief Without Drugs on meditation from 1967, the Simonton’s Getting Well Again was published in 1978 and covered imagery and psychology of cancer; you could read all available in a couple of weeks.



No computers.

No internet.

What was in place was like an underground network where information was shared by adventurous patients and families via letters - remember them - phone calls and the occasional Roneo and Gestetner offering.

When our groups commenced, people came to learn.

They often came with the feeling there was nothing they could do. When they discovered what was possible, it was like a light was turned on. A surge of hope transformed their situation and state of mind and new possibilities opened. Confidence arose and healing was begun.

THESE DAYS
So much information.

A myriad of books.

The internet laden with possibilities. So many competing views.

Of course there is a lot that is good, but amidst the overload, confusion often reigns. People seem overawed by the choices. Many seem to become stuck; unable to sort the proverbial wheat from the chaff, and inaction often follows. Or at best for many, indecision. Uncertainty.

So while many do come to our groups seeking help to clarify what is in their own best interests, so much of this is compounded by the next issue.

2. The power to discriminate has diminished
BACK THEN
People diagnosed with cancer faced simpler choices. If a medical cure was on offer, they generally took it. If there was no cure on offer, they were often told rather bluntly with words to the effect of “there is nothing more we can do for you, you have a short time to live, go home and come back near the end and maybe Palliative Care will be helpful”.

So the choices were stark. If there was no medical cure and yet people still aspired to recovering against the odds, they knew it was up to them. Simple. Because competing sources of information were few, people trusted in what was available, applied it and for many, it worked. Simple.

THESE DAYS
So much information and so many people with an opinion, with advice and highly geared Social Media machines; and often with vested interests based on what is being sold.

Not simple. Confusing. What to do? A difficulty with discriminating further complicated by the next issue.

3. Palliative Care has become Palliative Treatment

BACK THEN
Palliative Care was just emerging as a medical discipline in its own right.

Dame Cicely Saunders started it all in London in 1967; Elizabeth Kubler-Ross published On Death and Dying in 1969.

Palliative Care was all about caring for the dying. Making life as comfortable and meaningful as possible. Minimal treatment, maximum symptom control; aiming for a good end to life, a good death.


THESE DAYS
Some while back, well meaning doctors realized telling people there was “nothing more we can do for you” was not very kind. At the same time, in my view big business in medicine realized they were missing a huge market. Palliative Care moved into Palliative Treatment.

Now most people who do not have a medical cure on offer for their cancer are being offered some
form of active treatment or are yearning to be on a trial.

Of course, much of this is good but there is a hidden cost that does not seem popular to talk about.

These Palliative Treatments by definition are non-curative.

They have the stated intention of what Palliative care used to offer - to extend life and improve Quality of life. But many can observe this is not always the case. The treatments can be demanding, quite often debilitating, and there is a hidden issue.


These treatments may - not always, but may - compete with a person’s own ability to heal.

To discuss this issue seems almost like a taboo in current time, yet surely for those aiming for full recovery, this is a real issue. There is always a balance to strike.

And it is no easy balance. Maybe through one’s own efforts one can transform a treatment whose intention is palliative into one that is curative. But equally, maybe if one is fully focussed on recovery, some Palliative Treatments are not in one’s best interests.

In a world of open-mindedness, these issues would be excellent ones to question, discuss, investigate and research seriously. But then complication of the final issue.

4. Big business has moved into cancer medicine.
BACK THEN
Cancer medicine was somewhat under-serviced and under-resourced. Because there were limited treatments there was a limited market. The influence of Big Pharma was limited.

THESE DAYS

As Palliative Treatment developed so too did the interests of big business.

Investigations became big business.

Doctors were convinced to have less confidence in their very cheap, but previously highly developed clinical skills, and instead to trust in not just X Rays but highly expensive scans and extensive blood tests.

New treatments whilst still clearly palliative in nature, are hugely expensive. Many of the recent “breakthroughs” offer some life extension, quite a side-effect profile, almost irresistible allure to patients and families, and great cost. Many of the new treatments are $100,000 and beyond per person per year.

Maybe these innovations will lead to real cures in the future. Maybe. For now, they are incredibly expensive and there is a limit to how many more the public purse can fund. And how many of us have the resources to fund them privately?

What is clear from the medical literature at present is that many cancer services, both investigatory and for treatment, are being over-recommended and over-utilised. Cancer is very big business.

WHAT TO DO?
Trust in your own capacity to discriminate - or find someone highly trustworthy to tell you what to do.

Ideally work out what you really want. If you are fully intent on recovering from cancer then the number one question has to be “What is most likely to heal me?”

Back in the mid seventies when I was totally committed to recovery, everything I did was put through the first big filter… Will this thing I am considering to do actually help me to recover?” Everything went through that filter. Everything. I was uncompromising.

Everything I did was considered deliberately. Everything was subjected to the discrimination we are talking about. I sought the best advice I could. I read what was relevant. I considered people’s qualifications and experience. I consider the impact of vested interests and big business. I asked heaps of questions. I made notes, lists. I analysed and then I sat quietly to reflect, to contemplate and to seek counsel from my own inner wisdom through contemplation.

Once I made a decision I stuck with it long enough to find out whether it was actually working for me or not and while very focussed, was not stupid enough to keep doing something that was not working.



So my work with residential cancer groups has come to an end.


There are probably many ways of explaining this - many levels - but perhaps the simplest is to say that I trust that inner wisdom, that intuitive capacity we all have and that tells me loud and clear this is the right thing to have done at the right time.


So amidst this awkward sense of knowing there has been so much knowledge and experience built up over the years that could still be helpful to others, there is the comfort of knowing that the Foundation I established is in good hands and going well and that others are spreading this work far and wide. So much more on offer now compared to when we were all that was on offer in 1981.

So my heart will always be with those affected by cancer.

In the longer term, cancer is clearly a lifestyle related disease and the best way to treat it is to prevent it. Much better never to develop cancer than to get it and recover - wonderful as recovering, especially against the odds may be.

I will continue to post blogs and write elsewhere on these issues. Maybe I will be persuaded to do the occasional public event. Maybe. Whatever happens there, my over-riding wish is that you all find long-lasting peace, deep inner contentment and live long and fulfilling lives.

RELATED BLOGS
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The Gawler cancer program since 1981

REFERENCE
You Can Conquer Cancer

The-Gawler-Cancer-Program-since-1981

She propped herself in the corner of a sofa so she could stay upright. Her head wobbled and from time to time her eyes seem to loose focus and wander uncontrollably. The time was the 16th of September 1981; the lady in question had an advanced brain tumour and a prognosis in terms of weeks. The occasion was the first ever meeting of the Melbourne Cancer Support Group and my friend from way back then is still alive.

At 2pm on Friday 24th November 2017 I will conclude my last cancer residential program.

During these past 36 years I have experienced and witnessed so many remarkable things.

People learning how to live well and to die well.

People recovering against the odds.

People combining to help and support each other.

The delight of shared human experience.

So much gratitude for the many outstanding people who contributed to this work. So much frustration with the lack of interest, understanding and uptake by large sections of the medical profession; the welcome and increasing support from those with more vision and base intelligence.

And a blend of satisfaction and disappointment with the slow but steady increase in availability of the programs more widely - happy to see so many groups around the world offering this work; dismay that my own Foundation needed to cease offering the non-residential cancer programs for lack of uptake and now is reducing the 10 day residential program from 10 to 5 days to match demand.

What we can be certain of is that everything changes. It is time for me to change and so this week, time for gratitude; time to acknowledge some of the wonderful pioneering people who have made what has been accomplished so far possible, but first

Thought for the day : The Ultimate Attainment


The past is already past;
Do not try to regain it.
The present does not stay;
Do not try to touch it.
From moment to moment,
The future has not come;
Do not think about it
Beforehand.

Whatever comes to the eye,
Leave it be.
There are no commandments
To be kept;
There is no filth to be cleansed.
With empty mind really penetrated, 
The dharmas have no life.

When you can be like this,
You have completed
The ultimate attainment.


P'ang Yün - 8th century Zen Master



The full list of who to thank goes on forever, but maybe it is possible to thank those who were the first in their respective arenas; the pioneers…

Co-founder
The first to thank is my first wife Grace who helped establish the Melbourne Cancer Support Group and then the Foundation. Grace used her experience of helping me to recover and went on to study naturopathy with Dorothy Hall. She spoke to so many people on the telephone in the early days, led some groups and helped develop the program; a huge contribution.

First publicity
Back in 1981The Age featured my story on its Saturday edition the week before the program started. This informed the public of what was on offer and ensured good attendance right from the beginning.

The first group
Much gratitude to that first group. They trusted me enough and were inspired by my story enough to give what was on offer a go; and in doing so, established that the program was worth persevering with. It all developed from them.

First therapist
Mike Sowerby was a vet student when he developed cancer of the kidney. He recovered without medical treatment, joined us with little relevant training but  used his experience, intelligence and insight to become highly effective. Mike went on to study Jungian psychology amongst other things and continues to work in WA.

So many exceptional, dedicated, compassionate, wise therapists have followed in Mike’s footsteps.

First receptionist/administrator
Barbara Bowman came when we opened our first pokey little office in a suburban shopping strip in Mont Albert and did her best helping us to develop systems to support the program.

Then so many amazingly dedicated staff over the ensuing years; so many.

Not always easy working in the pressure cooker of helping those facing major illness, but so much gratitude for the dedication and the ability to put the needs of those we were helping first and foremost and for creating such a welcoming, supportive and healing atmosphere.

                                                                                                  Staff Christmas party 2009
First volunteer
Not sure who this would have been as many people came forward from the very earliest days with offers to help. At one stage in the late 80s, The Foundation had provided extensive training to a team of around 200 volunteers who provided individual support to every person who joined the Melbourne Cancer Support Group; but then we have relied on volunteers in so many aspects of this work.

First President
In 1983 The Foundation became an Incorporated Association - a not-for-profit, charitable institution with tax-deductible status. First president was Morrie Watts, husband of Bessie who had experienced a remarkable recovery from breast cancer after attending the groups.

Over the years there have been many Presidents, many board members and being those who take ultimate responsibility for the Foundation everyone involved owes them much gratitude.

First patron/ mentor
Sir Edward “Weary” Dunlop was father to one of my University friends and took an interest in this cancer work from its earliest days. While never a “formal” patron, Weary launched You Can Conquer Cancer while Patron of the Anti-Cancer Council as it was back then and gave strong support to our work helping people with cancer to help themselves. It was a privilege and a delight to meet with him regularly, to discuss and seek his wise counsel on issues as the unfolded around the Foundation.


First major donors
Dorothy and Ken Edglow, Bill McHarg and David Bardas combined to make the purchase of the Yarra Valley land possible in 1984 and gave the impetus to its on-going development.

It is obvious that without tremendous community support from donors big and small the Foundation would have been unable to help as many people as it has; maybe it would not even still exist today; so these people deserve a great deal of gratitude.




First researcher
Embarrassing, but I cannot remember the name of the man who in the late 80s dedicated 2 years of his time in an attempt to set up a research program for us. (Can anyone help me with this name?) Those were the days when computers were rudimentary, and in the end nothing publishable was accomplished.

It is a deep regret that we were never able to develop an effective research program at the Foundation. To be frank, in the early days we were poorly advised around what to do; in later days when we did employ qualified researchers and collaborated with external researchers, what we were able to accomplish was simply inadequate - mostly due to lack of funding and support from external people and institutions.

I do wonder how expensive the new drugs need to get before someone seriously looks at what we do for so little cost and researches it seriously. It is amazing that over the 36 years, there has only been one really good study on outcome - the Ornish study from way back in 2005; and that it demonstrated singifican t benefits and yet no one to date has even tried to replicate that study. Cannot imagine that outcome if the study had shown the benefits of a new drug!

Maybe one day ….

First business manager
Scott Crisp was the first to take on this role and laid the foundation for many good people to come.


First cook

Dorothy Edgelow set up the Foundation kitchens, established the first menus, wrote the first cookbooks.

Dorothy set the tone for the kitchen catering staff becoming a focus of care and nurturing for all those who attend residential programs.

First gardener
Peter LeRay, a dedicated biodynamic and deeply spiritual gardener set up the Foundation’s first garden at Yarra Junction.

It had a wonderful circular layout; is where the open ground for Chi Gung and yoga is now, and moved up the hill to enable larger scale fruit and vegetable production.

What a great team of gardeners have built on Peter’s legacy!





First masseur/body therapist
I think this would have been Trevor Steele. Trevor was a wonderful, whimsical and deeply caring therapist and an excellent masseur. There has been a wonderful team follow in his footsteps.

First musician
Hans Henzler had a night job at the famous Cuckoo Restaurant in the Dandenong Hills, a wonderful deep bass voice and an infectious warmth that got people into communal sing at our early residential programs.

Since then we seem to have specialized in harpists, but many other musicians have added the meditative healing benefits of their talents.

So to conclude; a profound sense of deep gratitude to all who have contributed to this cancer work, and to repeat

The past is already past;
Do not try to regain it.
The present does not stay;
Do not try to touch it.
From moment to moment,
The future has not come;
Do not think about it
Beforehand.

Everything changes…