If you had been diagnosed with cancer 35 years ago, in all probability you would have approached it very differently to how you might today; and the treatment and manner in which you would have been treated would also have been very different.
It being 35 years since the very first meeting of the Melbourne Cancer Support Group (16th September 1981), it seems timely to record observations of these far reaching changes. So what follows is a major piece that examines the changes in many areas. This is longer than the average post by quite a way, so settle in; maybe a cup of tea???, but first
Thought for the day
Physical quietness
Seems the easiest to achieve,
Although there are levels and levels of this too,
As attested by the ability of Hindu mystics
To live buried alive for many days.
Mental quietness,
In which one has no wandering thoughts at all,
Seems more difficult, but can be achieved.
But value quietness,
In which one has no wandering desires at all
But simply performs the acts of his life without desire;
That seems the hardest.
Robert Persig
Changes in Cancer Medicine over the last 35 years
Meditation
Has gone from being very much on the fringe and treated with generalized suspicion, to having a powerful Evidence Base and widespread support amongst Health Professionals and the public.
In cancer medicine specifically, there is very strong anecdotal evidence for meditation’s widespread benefits. The Evidence Base for quality of life benefits is so strong that they have to be accepted. However, remarkably, despite over 7,000 studies having been published on meditation, including for many health interventions, there are still no outcome trials published with meditation as a therapeutic intervention for cancer.
Mindfulness
Has gone from being virtually unknown as a word or technique in 1981 to the flavor of the month that has no prospect of going away.
Mindfulness has been branded as secular meditation and as such has overcome many of the boundaries meditation faced in earlier days.
The very positive anecdotal evidence (as in what people say about their practice) and the strong Evidence Base is similar to that for meditation – and overlaps quite a deal.
Therapeutic Nutrition
Has gone from being ridiculed at worst and misunderstood at best by the medical profession, to now having an emerging Evidence Base that is becoming compelling.
However, despite this, most doctors seem to fail to grasp the powerful, positive therapeutic potential nutrition offers to those affected by cancer. This failure is still reflected in the community where therapeutic nutrition is still often undervalued and therefore overlooked.
The single most powerful determinant in this error of omission – failing to recognize the value of, and actively promoting, therapeutic nutrition – is the ongoing lack of nutritional training for doctors.
As a veterinarian by my own original training, I continue to be amazed by this deficit, and feel a deep sadness for all those people who would be helped if their doctors encouraged them to attend to what they eat.
Emotional Health and Healing
Has gone from being a non-issue in society to becoming highly visible.
In 1981, as a young decathlon athlete I had my right leg amputated through the hip. My surgeon was a kind, compassionate man and I felt his distress and compassion; however, no one offered me any counseling, no one addressed my emotional health. No one considered how my emotional state might affect my future – either in terms of risk of suicide, general wellbeing or regarding a relapse.
These days, depression and suicide are such big community concerns the whole landscape has changed. These issues are spoken of openly and the link between emotional state and body function is clear.
Mental Health, State of Mind and Healing
Often labeled as “Positive Thinking”, in 1981 this field had popular support amongst the community. Doctors often said “well, can’t imagine it will do any good, but at least it probably will do no harm”. So it, along with our groups, was tolerated and generally thought of as being somewhat useful.
Around a decade ago, there came a fad to attack Positive Thinking. My own understanding of this was that the criticism grew out of a lack of understanding. There is a big difference between Wishful Thinking – where you hope for the best and do nothing about it, and Positive Thinking – where you hope for the best AND you do a lot about it.
My sense is the criticism was aimed at Wishful Thinking, and this seems fair enough. However, some did not realize that Positive Thinking is not just a state of mind. Positive Thinking is an invitation to hard work, to doing a lot about fulfilling good intentions – like actually changing what you eat and meditating regularly, not just dreaming about doing it some day.
In cancer medicine specifically, the field of Psycho-oncology has emerged as a major specialty that studies and therapeutically applies the links between emotions, mind and body. The peak body for practitioners in this field is the International Psycho-oncolgy Society; a group I have been a member of for about 20 years.
Death and Dying
Yes, things have changed here too!
In 1981, this was close to being a taboo subject across the community.
Along came Elizabeth Kubler-Ross (fond memories of her visit to our centre in the mid 80s) and the conversations opened.
My life’s work and the Gawler Foundation itself may well be known for helping people overcome the many challenges cancer presents, however, one thing we have done particularly well since those very early days – and we do not seem to be so well known for this – is that we have helped many people along with their families and friends to experience a good death.
Cancer Medicine
In 1981 mainstream cancer treatment was all about surgery, chemotherapy and radiation. Five year survival rates on average for all people diagnosed with cancer was about 50%. Often the treatments were pretty tough on the patients.
In 2016, there is a general acceptance amongst the Oncology world that the limits of future benefits achievable from better forms of surgery, chemotherapy as it was and radiotherapy may well have been reached. This being said, improvements in these fields has taken the 5 year survival average to around 65% - a significant gain, and management of treatment side-effects is much better.
What is emerging are new “Biologically Elegant“ forms of treatment. The most notable of these has been the recent emergence of Immuno-therapies that can activate and target the bodies own immune system against an individual’s cancer.
These treatments of real hope for longer term survival for some (often small) groups of patients, but come at high cost (often $100,000 - $150,000 per person per year), can have tough side-effects and are currently somewhat unpredictable in who they will actually help.
However, clearly what these treatments do prove is that the immune system can be a powerful therapeutic force in cancer medicine. I remember being ridiculed for putting forward this hypothesis as a way of explaining the regular spectacular long term recoveries we saw back in those early days of the ‘80s (and continue to see). Times do change…
Worth commenting too - it seems far more younger people are being diagnosed with cancer, and for them, their cancers often seem to be more aggressive. Highlights the need for more attention going to prevention
Palliative Care
In the ‘80s people were often told by well meaning, and often quite disappointed doctors (who to be fair often did not communicate all that well) that there was nothing more that could be done for them medically except to refer them to Palliative Care.
Palliative Care in the ‘80s was about caring for people as they went through the process of dying. No treatment as such was involved.
In current time, I suggest that in Cancer Medicine, Palliative Care is better described as Palliative Treatment.
Nowadays many are maintained on chemotherapy, all too often vigorously, and one has to wonder at the balance between quality of life issues and the small gains that maybe follow in survival times.
There is also much comment in the medical literature regarding the financial costs of this palliative Treatment and what economic forces are driving it.
One major effect of this change is that in the ‘80s, people in a Palliative Care situation knew where they stood. They were told nothing could be done for them medically, so if they still aspired to recover, they knew they needed to be very thorough.
These days many are between camps as it were.
Please be clear here. I am not against medical treatment in any form. Much of it is particularly useful and effective. Obviously. Yet equally obviously we need to be able to observe and comment when it is limited, is not used well, or has unwanted effects on those it intends to help.
So, today, many people affected by cancer that have a poor prognosis are being offered Palliative Treatment. This is not intended to cure, but may help with symptoms and extend survival. Good intentions.
In fact, what this means is that many of these people pin their hopes on the external treatment. Many in fact form the fantasy that the Palliative Treatment will actually become curative, despite being told this is highly unlikely (again to be clear – unlikely, but not impossible. I have known people who have used their own resources to create a cure around a palliative treatment, so this whole field is somewhat tricky.)
But for many, their attention to self-help options is lessened. In my experience, this may well diminish the chance of unexpected, long-term recovery.
The media
Wow! How this has changed. In the early years, the Press consisted of the print media, radio and TV. All were genuinely interested in this work, gave us very good press, and when they arranged debates gave both sides a fair and equitable voice.
In more recent times the media has become incredibly diverse. Social media has emerged as a major means for communication and spawned a whole new field of expertise that many has left behind and made it much harder for small groups to reach their audience. Tabloid journalism has become a much bigger influence on people’s opinions.
Another new phenomena is that courtesy of Google, anything adverse has the potential to stick around for years. Some media experts would advise that even speaking of this is unwise, but it is a very unhelpful fact.
Enough to say that since 1981 there have been many thousands of people deeply grateful for attending the cancer groups and personally, I am very grateful to the media for helping to change community awareness when it comes to what a person affected by cancer can do for themselves.
Books
In 1981, there were very few cancer self-help books.
The Simonton’s Getting Well Again (first published 1978) focused on Guided Imagery and psychology and was well on its way to becoming a classic, while Larry Le Shan’s You Can Fight For Your Life: Emotional Factors in the Treatment of Cancer (1980) was another great book of the few that has stood the test of time.
Most of the nutrition books represented particular viewpoints like The Kelley Diet or Gerson’s A Cancer Therapy – results of 50 cases.
You Can Conquer Cancer was first published in 1984 and was possibly the world’s first book on the truly integrated approach to cancer management from the patient’s perspective. It has remained in continuous print since, has been majorly revised recently and translated into over a dozen languages.
Giving You Can Conquer Cancer to someone recently diagnosed with cancer remains my best suggestion as a starting point.
Those directly affected by cancer
Back in the 80s, most people came to our cancer groups driven by fear. They suffered from a lack of information and often felt like they were in a hopeless situation.
From the groups, they learnt there was so much they could do (the groups were a source of
information), that recovery was possible; maybe not easy, but possible – and hope was created.
Many did have unexpected long-term recoveries, many extended their lives significantly. Most found a new level of meaning, purpose and inner peace. It was amazing to be a part of it all.
Now in 2016, some do still come to the groups driven by fear, however, many more come recognising that there is a lot they can do to help themselves and that they need help to learn how best to use their own resources to manage their illness and to contribute to their survival.
Most come over-loaded with information. From the groups they learn more about how to prioritize what they could do – what is useful, what to leave out. The groups act as a filter for all that information.
Having been in existence for over 35 years, these groups are the repository of so much information and experience that we can talk to people directly – from the research and from the accumulated experience of so many people who have attended over the year. It continues to be amazing to be a part of it all.
Research
In1981 there was virtually nothing in this field.
In 1984 I was invited by the Peter Mac Hospital to consider a joint research project with them and the Anti-Cancer Council as it was in those days. This suggestion was quashed by the Anti-Cancer Council.
As an organization, during the late 80s we then put quite some energy into developing our own in house research project. We actually attempted too big a study and could not manage it.
We then began ongoing collaborations external research projects examining quality of life benefits,
and one that looked at survival times. These collaborations have continued on over the years and I imagine would still be taken up as new opportunities present.
We did combine with Monash Medical School and all its resources, headed by Dr Craig Hassed, and twice approached the Cancer Council for major funding for an outcome study. Unfortunately, despite the best efforts of all, these were not successful.
The lack of research into the impact of a Lifestyle Medicine based self help group on cancer patient survival seems an area of omission. Cynics say there is no money to be gained from finding out if self-help interventions are effective.
For me, I just look forward to when some major organization or philanthropist puts up the fairly considerable amount of money required to fund such a study. My sense is many people would like to see the results.
SUMMARY
We change.
Life changes.
Cancer management changes.
It continues to be amazing to be a part of it all.
Are you contributing to change?
Resisting change?
Or just going with the flow???
COMING RETREATS
Meditation Retreat - coming very soon!
Ruth and I, with the help of Liz Stillwell, will personally lead our next 7 day meditation retreat in New Zealand : October 22 - 28.
Next Aussie one, April 2017 in the Yarra Valley.
In NZ, we will give attention to the major experiences of deeper meditation – stillness, clarity and bliss. We will explore these states experientially and examine their relevance in an ongoing and satisfying meditation practice.
This promises to be one of the very best retreats – well worth travelling from Australia to attend, or making the journey to the glorious Mana Retreat Centre from anywhere around New Zealand.
ALL DETAILS – CLICK HERE
Specific cancer residential programs
8 days In Wanaka New Zealand
- November 3 - 10
This is a comprehensive program focusing on activating and targeting the immune system, accelerating healing, much more on a therapeutic lifestyle, along with a range of strategies for heightening emotional health and wellbeing.
Again we will have the incomparable help of Liz Stillwell and the amazing Stew Burt - the ideal starting point for everyone affected by cancer.
5 days in the Yarra Valley : November 14 - 18
More designed as a follow-up cancer program for those who have done a previous program with Ruth and myself, the Foundation, or one of its affiliates. Call the Foundation for details of eligibility.
ALL DETAILS – CLICK HERE
It being 35 years since the very first meeting of the Melbourne Cancer Support Group (16th September 1981), it seems timely to record observations of these far reaching changes. So what follows is a major piece that examines the changes in many areas. This is longer than the average post by quite a way, so settle in; maybe a cup of tea???, but first
Thought for the day
Physical quietness
Seems the easiest to achieve,
Although there are levels and levels of this too,
As attested by the ability of Hindu mystics
To live buried alive for many days.
Mental quietness,
In which one has no wandering thoughts at all,
Seems more difficult, but can be achieved.
But value quietness,
In which one has no wandering desires at all
But simply performs the acts of his life without desire;
That seems the hardest.
Robert Persig
Changes in Cancer Medicine over the last 35 years
MeditationHas gone from being very much on the fringe and treated with generalized suspicion, to having a powerful Evidence Base and widespread support amongst Health Professionals and the public.
In cancer medicine specifically, there is very strong anecdotal evidence for meditation’s widespread benefits. The Evidence Base for quality of life benefits is so strong that they have to be accepted. However, remarkably, despite over 7,000 studies having been published on meditation, including for many health interventions, there are still no outcome trials published with meditation as a therapeutic intervention for cancer.
MindfulnessHas gone from being virtually unknown as a word or technique in 1981 to the flavor of the month that has no prospect of going away.
Mindfulness has been branded as secular meditation and as such has overcome many of the boundaries meditation faced in earlier days.
The very positive anecdotal evidence (as in what people say about their practice) and the strong Evidence Base is similar to that for meditation – and overlaps quite a deal.
Therapeutic Nutrition
Has gone from being ridiculed at worst and misunderstood at best by the medical profession, to now having an emerging Evidence Base that is becoming compelling.
However, despite this, most doctors seem to fail to grasp the powerful, positive therapeutic potential nutrition offers to those affected by cancer. This failure is still reflected in the community where therapeutic nutrition is still often undervalued and therefore overlooked.
The single most powerful determinant in this error of omission – failing to recognize the value of, and actively promoting, therapeutic nutrition – is the ongoing lack of nutritional training for doctors.
As a veterinarian by my own original training, I continue to be amazed by this deficit, and feel a deep sadness for all those people who would be helped if their doctors encouraged them to attend to what they eat.
Emotional Health and Healing
Has gone from being a non-issue in society to becoming highly visible.In 1981, as a young decathlon athlete I had my right leg amputated through the hip. My surgeon was a kind, compassionate man and I felt his distress and compassion; however, no one offered me any counseling, no one addressed my emotional health. No one considered how my emotional state might affect my future – either in terms of risk of suicide, general wellbeing or regarding a relapse.
These days, depression and suicide are such big community concerns the whole landscape has changed. These issues are spoken of openly and the link between emotional state and body function is clear.
Mental Health, State of Mind and Healing
Often labeled as “Positive Thinking”, in 1981 this field had popular support amongst the community. Doctors often said “well, can’t imagine it will do any good, but at least it probably will do no harm”. So it, along with our groups, was tolerated and generally thought of as being somewhat useful.Around a decade ago, there came a fad to attack Positive Thinking. My own understanding of this was that the criticism grew out of a lack of understanding. There is a big difference between Wishful Thinking – where you hope for the best and do nothing about it, and Positive Thinking – where you hope for the best AND you do a lot about it.
My sense is the criticism was aimed at Wishful Thinking, and this seems fair enough. However, some did not realize that Positive Thinking is not just a state of mind. Positive Thinking is an invitation to hard work, to doing a lot about fulfilling good intentions – like actually changing what you eat and meditating regularly, not just dreaming about doing it some day.
In cancer medicine specifically, the field of Psycho-oncology has emerged as a major specialty that studies and therapeutically applies the links between emotions, mind and body. The peak body for practitioners in this field is the International Psycho-oncolgy Society; a group I have been a member of for about 20 years.
Death and Dying
Yes, things have changed here too!In 1981, this was close to being a taboo subject across the community.
Along came Elizabeth Kubler-Ross (fond memories of her visit to our centre in the mid 80s) and the conversations opened.
My life’s work and the Gawler Foundation itself may well be known for helping people overcome the many challenges cancer presents, however, one thing we have done particularly well since those very early days – and we do not seem to be so well known for this – is that we have helped many people along with their families and friends to experience a good death.
Cancer Medicine
In 1981 mainstream cancer treatment was all about surgery, chemotherapy and radiation. Five year survival rates on average for all people diagnosed with cancer was about 50%. Often the treatments were pretty tough on the patients.In 2016, there is a general acceptance amongst the Oncology world that the limits of future benefits achievable from better forms of surgery, chemotherapy as it was and radiotherapy may well have been reached. This being said, improvements in these fields has taken the 5 year survival average to around 65% - a significant gain, and management of treatment side-effects is much better.
What is emerging are new “Biologically Elegant“ forms of treatment. The most notable of these has been the recent emergence of Immuno-therapies that can activate and target the bodies own immune system against an individual’s cancer.
These treatments of real hope for longer term survival for some (often small) groups of patients, but come at high cost (often $100,000 - $150,000 per person per year), can have tough side-effects and are currently somewhat unpredictable in who they will actually help.
However, clearly what these treatments do prove is that the immune system can be a powerful therapeutic force in cancer medicine. I remember being ridiculed for putting forward this hypothesis as a way of explaining the regular spectacular long term recoveries we saw back in those early days of the ‘80s (and continue to see). Times do change…
Worth commenting too - it seems far more younger people are being diagnosed with cancer, and for them, their cancers often seem to be more aggressive. Highlights the need for more attention going to prevention
Palliative Care
In the ‘80s people were often told by well meaning, and often quite disappointed doctors (who to be fair often did not communicate all that well) that there was nothing more that could be done for them medically except to refer them to Palliative Care.
Palliative Care in the ‘80s was about caring for people as they went through the process of dying. No treatment as such was involved.
In current time, I suggest that in Cancer Medicine, Palliative Care is better described as Palliative Treatment.Nowadays many are maintained on chemotherapy, all too often vigorously, and one has to wonder at the balance between quality of life issues and the small gains that maybe follow in survival times.
There is also much comment in the medical literature regarding the financial costs of this palliative Treatment and what economic forces are driving it.
One major effect of this change is that in the ‘80s, people in a Palliative Care situation knew where they stood. They were told nothing could be done for them medically, so if they still aspired to recover, they knew they needed to be very thorough.
These days many are between camps as it were.
Please be clear here. I am not against medical treatment in any form. Much of it is particularly useful and effective. Obviously. Yet equally obviously we need to be able to observe and comment when it is limited, is not used well, or has unwanted effects on those it intends to help.
So, today, many people affected by cancer that have a poor prognosis are being offered Palliative Treatment. This is not intended to cure, but may help with symptoms and extend survival. Good intentions.
In fact, what this means is that many of these people pin their hopes on the external treatment. Many in fact form the fantasy that the Palliative Treatment will actually become curative, despite being told this is highly unlikely (again to be clear – unlikely, but not impossible. I have known people who have used their own resources to create a cure around a palliative treatment, so this whole field is somewhat tricky.)
But for many, their attention to self-help options is lessened. In my experience, this may well diminish the chance of unexpected, long-term recovery.
The media
Wow! How this has changed. In the early years, the Press consisted of the print media, radio and TV. All were genuinely interested in this work, gave us very good press, and when they arranged debates gave both sides a fair and equitable voice.
In more recent times the media has become incredibly diverse. Social media has emerged as a major means for communication and spawned a whole new field of expertise that many has left behind and made it much harder for small groups to reach their audience. Tabloid journalism has become a much bigger influence on people’s opinions.Another new phenomena is that courtesy of Google, anything adverse has the potential to stick around for years. Some media experts would advise that even speaking of this is unwise, but it is a very unhelpful fact.
Enough to say that since 1981 there have been many thousands of people deeply grateful for attending the cancer groups and personally, I am very grateful to the media for helping to change community awareness when it comes to what a person affected by cancer can do for themselves.
Books
In 1981, there were very few cancer self-help books.The Simonton’s Getting Well Again (first published 1978) focused on Guided Imagery and psychology and was well on its way to becoming a classic, while Larry Le Shan’s You Can Fight For Your Life: Emotional Factors in the Treatment of Cancer (1980) was another great book of the few that has stood the test of time.
Most of the nutrition books represented particular viewpoints like The Kelley Diet or Gerson’s A Cancer Therapy – results of 50 cases.
You Can Conquer Cancer was first published in 1984 and was possibly the world’s first book on the truly integrated approach to cancer management from the patient’s perspective. It has remained in continuous print since, has been majorly revised recently and translated into over a dozen languages.
Giving You Can Conquer Cancer to someone recently diagnosed with cancer remains my best suggestion as a starting point.
Those directly affected by cancer
Back in the 80s, most people came to our cancer groups driven by fear. They suffered from a lack of information and often felt like they were in a hopeless situation.
From the groups, they learnt there was so much they could do (the groups were a source of
information), that recovery was possible; maybe not easy, but possible – and hope was created.
Many did have unexpected long-term recoveries, many extended their lives significantly. Most found a new level of meaning, purpose and inner peace. It was amazing to be a part of it all.
Now in 2016, some do still come to the groups driven by fear, however, many more come recognising that there is a lot they can do to help themselves and that they need help to learn how best to use their own resources to manage their illness and to contribute to their survival.Most come over-loaded with information. From the groups they learn more about how to prioritize what they could do – what is useful, what to leave out. The groups act as a filter for all that information.
Having been in existence for over 35 years, these groups are the repository of so much information and experience that we can talk to people directly – from the research and from the accumulated experience of so many people who have attended over the year. It continues to be amazing to be a part of it all.
Research
In1981 there was virtually nothing in this field.
In 1984 I was invited by the Peter Mac Hospital to consider a joint research project with them and the Anti-Cancer Council as it was in those days. This suggestion was quashed by the Anti-Cancer Council.
As an organization, during the late 80s we then put quite some energy into developing our own in house research project. We actually attempted too big a study and could not manage it.
We then began ongoing collaborations external research projects examining quality of life benefits,
and one that looked at survival times. These collaborations have continued on over the years and I imagine would still be taken up as new opportunities present.
We did combine with Monash Medical School and all its resources, headed by Dr Craig Hassed, and twice approached the Cancer Council for major funding for an outcome study. Unfortunately, despite the best efforts of all, these were not successful.
The lack of research into the impact of a Lifestyle Medicine based self help group on cancer patient survival seems an area of omission. Cynics say there is no money to be gained from finding out if self-help interventions are effective.
For me, I just look forward to when some major organization or philanthropist puts up the fairly considerable amount of money required to fund such a study. My sense is many people would like to see the results.
SUMMARY
We change.
Life changes.
Cancer management changes.
It continues to be amazing to be a part of it all.
Are you contributing to change?
Resisting change?
Or just going with the flow???
COMING RETREATS
Meditation Retreat - coming very soon!
Ruth and I, with the help of Liz Stillwell, will personally lead our next 7 day meditation retreat in New Zealand : October 22 - 28.Next Aussie one, April 2017 in the Yarra Valley.
In NZ, we will give attention to the major experiences of deeper meditation – stillness, clarity and bliss. We will explore these states experientially and examine their relevance in an ongoing and satisfying meditation practice.
This promises to be one of the very best retreats – well worth travelling from Australia to attend, or making the journey to the glorious Mana Retreat Centre from anywhere around New Zealand.
ALL DETAILS – CLICK HERE
Specific cancer residential programs
- November 3 - 10
This is a comprehensive program focusing on activating and targeting the immune system, accelerating healing, much more on a therapeutic lifestyle, along with a range of strategies for heightening emotional health and wellbeing.
Again we will have the incomparable help of Liz Stillwell and the amazing Stew Burt - the ideal starting point for everyone affected by cancer.
5 days in the Yarra Valley : November 14 - 18
More designed as a follow-up cancer program for those who have done a previous program with Ruth and myself, the Foundation, or one of its affiliates. Call the Foundation for details of eligibility.
ALL DETAILS – CLICK HERE
