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 someform 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
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.
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REFERENCE
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