Positive thinking - What does it mean?

(as published in the Cancer Council's Cancer E-update)

“Just be positive”. This is a very common piece of advice given to people with cancer, who themselves often say that they are maintaining a “positive attitude”. Positive thinking is everywhere in the media and the cancer literature, and you could say that it has become the way to “do” cancer in our society.
Why “positive thinking” is so popular is unclear, although since at least the early days of psychoanalysis there has been a belief that people with certain states of mind are susceptible to certain diseases, and therefore that changing a state of mind can influence health. The proliferation of self help books in the 20th century also increasingly places responsibility for illness on the person who is sick, particularly when in spite of its best endeavours, medical science is unable to explain why people get a disease such as cancer. But if we take a step back, there are a number of questions we can ask about “positive thinking”. What does it mean? What do people expect to gain from being positive? What are the implications of this expectation for cancer patients and how they communicate with those around them?

First, what does it mean? Hoping, trying, going for treatment, being optimistic, being determined, making plans, acting as though nothing untoward is happening, getting on with it, not being negative, not talking about feeling bad about having cancer, taking active steps such as diet, exercise, not talking about the possibility of death, getting the best medical treatment, putting on a smiling face – it depends on who you ask. Just how varied are its meanings is illustrated by one Australian study which found that patients defined "being positive" in behavioural terms such as not letting cancer affect their daily lives, while nurses who were looking after them and encouraging them to be positive actually meant something else – they meant taking on attitudes such as hope, acceptance, a fighting spirit and looking on the bright side.

Secondly, why be positive? There are two distinct reasons. One is that it may make it easier for people to cope if they are – well, not negative. Perhaps not surprisingly, people who say they are optimistic report a better quality of life than those who do not. Also, we all want to take control over our disrupted lives after a cancer diagnosis. Being positive, or at least the attitude we take towards having cancer, is one thing that we can choose, and having a sense of control has been shown to reduce depression in people with cancer. Also, most people, including medical professionals, would much rather be around someone cheery than someone who is down, so it may benefit social interactions. The flip side of this is that it may interfere with communication, that feeling that they have to be positive may prevent people from expressing their feelings, or even go so far as to make it difficult for them to talk about and plan for things not going according to plan, including dying. In reality, acknowledging the possibility of adverse outcomes does not need to be incompatible with maintaining hope.

The other benefit ascribed to positive thinking comes from a belief that having a positive attitude has a biological advantage, that is, that it can lead to either extended remission or a cure. It is an area that is quite controversial, and overall the evidence is equivocal, with studies showing everything from some biological benefit to none at all. Once again there is a flip side, in that if the expected outcomes do not eventuate, a person can feel a sense of failure, that they have not tried hard enough and therefore that it is their fault. In his book Time on Fire , the actor Evan Handler (now better known as Charlotte's second husband on Sex and the City ) described just this sense of failure when he had a recurrence of leukaemia in spite of his best attempts at changing his outlook.

So what is the bottom line in all of this? Cancer is a very personal experience, and while those of us living with it make choices about how we face it, there is no clear-cut right or wrong way. In making these choices, and in living meaningful lives, we also need all the information we can find, all the support we can get, and all the hope we can muster.

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The Whole Human Being

Jane Gillespie

Kylie Minogue’s diagnosis of breast cancer earlier this year raised several important issues in the media that relate directly to the type of support that the Life Force Cancer Foundation provides to all cancer patients and their families.

In the Sydney Morning Herald (24/05/2005), Professor Phyllis Butow of the School of Psychology, Sydney University, said that “Some women feel very distressed for up to a year, or longer. They continue to experience really strong anxiety, and worry about the cancer coming back. About one in five becomes depressed and requires treatment.”

In the same article, Dr Jane Turner, a consultant psychiatrist to the National Breast Cancer Centre, said that a young female breast cancer patient might feel estranged from her friends and that these feelings of alienation might become worse if she is pressured to remain positive and not given the opportunity to voice her darkest fears.

The Life Force Cancer Foundation fully endorses these comments, but believes that emotions such as depression, anxiety, hopelessness, anger and fear are not unique to young women with breast cancer. Anyone, of any age, with any type of cancer, may experience all these emotions. It is vital that these people have somewhere safe where they can share all those feelings without being pressured to ‘be positive’. Those who do experience overwhelming feelings need to be able to talk about their worst fears in order to come to terms with the loss of their pre-cancer lives. Cancer patients who are given the time and space to get through the swamp that many feel they are drowning in, eventually come to embrace a new and sometimes even better life than before. By recognising that there is much to grieve and being supported to do just that, people can eventually be at peace with the fact that although cancer may not be a death sentence, it is a life sentence. With the type of support offered by Life Force, cancer patients can learn to live fully, despite the possibility of a recurrence.

Those actually facing death due to their illness also need to be given permission to talk about what this means to them. Pretending that feelings of loss, despair, terror and rage do not exist does not make them go away. Denying reality does not prevent the inevitable from happening; and neither does talking about death hasten its arrival.

A recent announcement was made about a world-first study funded by the Cancer Council Australia that will examine what impact stress and pressure can have on a woman’s chances of surviving ovarian cancer. About 40% of women diagnosed with this type of cancer do not survive. The research will try to get a clearer picture of what happens to these women psychologically when they are diagnosed, that may have a bearing on their survival. While the jury may still be out on whether stress contributes to people getting cancer, this study may shed light on whether experiencing stress affects a person’s prognosis after diagnosis.

Meditation has long been recognized as a beneficial tool to manage stress and all Life Force support groups incorporate a unique type of meditation called creative visualization. For each eight-week support program, Caro Jonas designs a series of meditations, every week’s visualization leading to the next. Group members are encouraged to practise each week’s particular meditation to assist them when anxiety feels overwhelming. Using this technique, people are introduced to a variety of methods to help them deal with stressful situations.

Medical recognition is now being given to a belief on which Life Force’s whole philosophy has been based since its inception in 1993. This is that Best Practice involves treating a cancer patient as a whole human being, not just a body with a particular disease. Meeting psychological and emotional needs contributes to better outcomes from medical treatment.

Life Force Cancer Foundation runs support groups dealing with the emotional impact that a cancer diagnosis has on patients and their carers, as well as weekend country retreats. Individual counselling, bereavement counselling and home or hospital visits can be arranged.

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The Median Is Not The Message


Prefatory Note by Steve Dunn

Stephen Jay Gould is an influential evolutionary biologist who teaches at Harvard University. He is the author of at least ten popular books on evolution, and science, including, among others, The Flamingo's Smile, The Mismeasure of Man, Wonderful Life, and Full House.

As far as I'm concerned, Gould's The Median Isn't the Message is the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say that, "the statistics don't matter," and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope. The Median Isn't the Message is reproduced here by permission of the author.
 
 

The Median Isn't the Message by Stephen Jay Gould


My life has recently intersected, in a most personal way, two of Mark Twain's famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before - lies, damned lies, and statistics.

Consider the standard example of stretching the truth with numbers - a case quite relevant to my story. Statistics recognizes different measures of an "average," or central tendency. The mean is our usual concept of an overall average - add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, "The mean income of our citizens is $15,000 per year." The leader of the opposition might retort, "But half our citizens make less than $10,000 per year." Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).

The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes
stereotypically centered on Southern California, feelings are exalted as more "real" and the only proper basis for action - if it feels good, do it - while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, "Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death."

This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.

In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: "What is the best technical literature about mesothelioma?" She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.
Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard's Countway medical library and punched mesothelioma into the computer's bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn't have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that's why they didn't give me anything to read. Then my mind started to work again, thank goodness.

If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don't know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. "A sanguine personality," he replied. Fortunately (since one can't reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.

Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge - and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon's proverb.

The problem may be briefly stated: What does "median mortality of eight months" signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as "I will probably be dead in eight months" - the very conclusion that must be avoided, since it isn't so, and since attitude matters so much.

I was not, of course, overjoyed, but I didn't read the statment in this vernacular way either. My technical training enjoined a different perspective on "eight months median mortality." The point is a subtle one, but profound - for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.

We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous "beginning of life" or "definition of death," although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard "realities," and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the "I will probably be dead in eight months" may pass as a reasonable interpretation.

But all evolutionary biologists know that variation itself is nature's only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently - and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.

When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation's best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call "right skewed." (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out - left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn't much room for the distribution's lower (or left) half - it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran - for I had already concluded that my favorable profile made me a good candidate for that part of the curve.

The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn't be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances - substantial time. I didn't have to stop and immediately follow Isaiah's injunction to Hezekiah - set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.

One final point about statistical distributions. They apply only to a prescribed set of circumstances - in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.

It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die - and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy - and I find nothing reproachable in those who rage mightily against the dying of the light.

The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn't expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain's most famous line of all: the reports of my death are greatly exaggerated.
 

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Cancer Survivors Day
On Sunday, March 8, Camp Quality hosted an inaugural Cancer Survivors Day. Several hundred people congregated on the steps of the Opera House in Sydney, to celebrate this special day. It was moving and inspiring. Among the speakers was Life Force Foundation member, Ann Taylor. At the conclusion of Ann's beautiful speech (below) the compere of the program was inspired by her words to proclaim a theme for the day. He urged everyone present to say 'I love you' to someone.

ANN'S SPEECH

My name is Ann, I am a four year cancer survivor. It is my absolute pleasure to be speaking to all the cancer survivors, those in treatment and their loved ones, today.

Over these four years I have worked very hard to survive and learn. For two years each Thursday, I sat with a group of people who, like me, did not know what to do. I thought I would die! As did my fellow travellers.

I have been lucky and survived a few years. Some of my friends have not been so lucky. I feel I had to be here for some reason. This moment is one of them.

Today I am working as a volunteer at St. Vincent's Hospice, where I care for people who are very ill and whose spirits never cease to amazeme. I have enrolled in a course of study (first in 39 years) and work part time, plus love and enjoy my family and friends.

We need to celebrate being survivors, be it a month a year or more.

I say thanks for my time. It has allowed me to become a better person and enjoy my moments on this Earth.

It is hard to die with unfinished business. From my journey over these past few years I have learnt from my support groups and my departed friends, it does not have to be so. I have mended fences and can now say 'I LOVE YOU' without hesitation.

Several dying friends asked me to live well with the time I have left. When you are saying goodbye to a loved one you seem to be at your best with listening skills, therefore I have heeded their words and wish to pass them on.

I go to retreats run by my support group 'Life Force' where we laugh, cry, eat, drink and just mend with each other. The support from these retreats is loving, caring and learning to go on another day.

Every day - (as we know) - is a battle with cancer, to those who are trying, the best way they can, I salute you and wish continued success. By being in a support group the battle is made easier.

I have just said goodbye to another friend. Two emotions that were with me were sadness, which is expected, and anger, which I was unprepared for. I attended my group, where I expressed my feelings and with the support and love from them, I have totally rid myself of the anger and accept my sadness and think only in loving memory of Christie. Christie's story was one of fighting, living and loving.

Cancer, I now believe, does not have to be a death sentence, I believe it is a reminder to live happily and walk gently though the days.

We only ever hear the sad stories, today is for the good ones, of which I am so grateful to be part. One day I hope to read many stories about we survivors in the media, as our percentage is still worth a mention.

When I heard the advertisement for this day, I was so excited. I have been asking for such a moment. I believe we have to celebrate the time we have with our loved ones, Our gift is life.

Keep fighting and please do seek support.

Thank you Camp Quality.

Have a wonderful day.

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(This appeared in the Beacon, the quarterly newsletter of the Breast Cancer Network Australia, in 1998)

Issues of
concern ... ...

What kind of support group?

 

It appears to me that it is still not recognised that emotional counselling and support needs to be part of the whole treatment of cancer. 

At least that was my experience, after my diagnosis of and treatment for breast cancer in Canberra.  This has been echoed by many cancer patients I have met since moving to Sydney.

Why is it not accepted that the diagnosis of a life-threatening illness is a realistic trauma in anyone's life?

My life will NEVER be the same.  I may not have been given a death sentence, but I have received a life sentence.  I do not live my life in fear and most of the time I am fine, but inevitably become anxious if I start feeling unusually tired or it is time for my regular review with my oncologist.

I believe all cancer patients should be given information about emotional support, whether or not they appear to need it.

I was a compliant patient during my operations and chemotherapy and put on a brave face, when inside I was feeling little and absolutely terrified.  Because I did not "fall apart", no-one told me it was normal to have feelings ranging from devastation, rage and despair to grief and total panic.

During my treatment I tried to keep my life as normal as possible.  I don't think I had "room" to deal with my emotions then, but it would have been a great help to know my night terrors were part of a grieving process.

I attended the local breast cancer support group a couple of times and was also put in touch with a volunteer, who spoke to me on the phone twice.  However, the support group was more of an information source, which was valuable in its own way, but it did not address my emotional needs.

The volunteer allotted to me talked about what a loving, supportive husband she had and how her family kept her on her toes by insisting she go bushwalking with them.  No, she didn't feel devastated by the loss of her breast and several years down the track everything in her life was marvellous.

I felt there must be something wrong with me, because I didn't want to hear how "marvellous" her life was when mine felt like hell and I had an ex-husband who couldn't/wouldn't take our disabled 16-year-old daughter more often while I was fighting this battle.

My self-esteem was shattered.  If a man left me when I was whole, who would want me now I was mutilated?

The messages I got were that I needed to be brave and positive, people really didn't want to hear my true feelings.  I was also frightened to be open with my mother and adult children, because I didn't want to upset them.

Emotions pushed down do not go away.  They bide their time and will be noticed eventually.

In my case, I had a complete emotional break-down six weeks after my treatment ended.  I made some momentous decisions about my life and moved to Sydney, sending my daughter to live with her father (giving him no choice), but my problems came with me.

Fortunately, the oncologist I was referred to is patron of an experiential support group.  For the first time, I had a forum to talk about what it really felt like to have cancer.

I have been going regularly to this group for the past three years and honestly feel this saved my life.

Despite a good prognosis, at the end of my treatment I was convinced I was going to die within a year.  What became my true healing was finding out that other people had the same tumultuous emotions.  Having a safe place to express my fears, anger and grief, and not be told that I was irrational, not be told that I must be positive, not be told to put it all behind me, not be told to forget that I had ever had cancer and get on with my life, was the best medicine for me at that time.

Sharing my experience of cancer with other group members freed me from the desperate need to try and share it with other people who were uncomfortable with or afraid of these big feelings.  I was then able to relate to people outside the group on other matters.

Being able to express all these so-called "negative" sentiments in a group of people who really knew what I was talking about, without being judged, enabled me to move through them and arrive at that much-touted positive place.

My conviction that this type of support is invaluable in treating cancer patients is so strong that I studied counselling for two years and will be starting a group of my own in Sydney's Northern Suburbs, under the auspices of the group which has given me so many benefits the Life Force Foundation.

If you recognise yourself in this story or feel an experiential support group would help you, contact Life Force for further information.

Life Force Foundation Limited,

PO Box 331, Westgate, NSW, 2048.

Ph (02) 9568 0747

 - Jane Gillespie