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A developmental programme teaching skills for coping with cancer.
TALK BY PETRA GRIFFITHS Friday 24 June 2005
The topic of the conference is the key, which I’ve interpreted as being the key to enhanced quality of life, whatever length that life will last.
I will reflect on work carried out at the Cancer Resource Centre in Battersea, South London, which was born in 1983, just a couple of years before the first National Conference was held.
What I have to say arises out of things that members of our Centre have said about the impact of cancer on their lives, and out of conversations with our practitioners, who are in close communication with our members and seeing at first hand the changes that take place in their lives.
Three members are here, and they may be able to add to what I have to say – or even to give a different view.
The work of the Cancer Resource Centre involves support, information, complementary therapies, home visits and outreach work with minority ethnic communities, and we aim to reach as wide a cross section of the community as possible.
The Key?
I found it stimulating to be asked to talk about the key, since our whole approach at the Cancer Resource Centre is based on an understanding of each person as an individual with their own unique response to life threatening illness, whether as a person with cancer or as a carer or family member.
There are of course some generally applicable things that can be said about enhancing quality of life when faced with cancer.
In preparing for today I held conversations with our counsellors and complementary therapy practitioners, and some themes and patterns emerged.
For us, the key is more like a process with many interconnected levels that each person journeys through at their own pace and in their idiosyncratic way, rather than a magic bullet that is going to open the door to quality of life for all.
There are helpful things to do that many people benefit from, but when the process works, "I did it my way" is how you are likely to think about it.
I’m going to introduce nine themes, which represent approaches that many people find contribute to wellbeing, though it’s always important to recognise that there will be people who thrive by ploughing a quite different furrow, and to be ready to validate them in that.
THEME 1 - HOSPITALITY
Firstly, an aspect of the Centre that is frequently commented on is the welcome and hospitality extended to people; the offer of a cup of tea as soon as you cross the threshold; the way the reception room is kept free of other business so that people coming for services can have a relaxed place to be; a feeling of spaciousness.
The plants are an important part of the healing feeling that people often refer to on entering the Centre. People feel they’re being responded to as a whole person rather than treated in a very formal way as a client kept at a distance from professional staff there to help.
The lack of barriers doesn’t imply having no boundaries – that wouldn’t be helpful to anyone. Boundaries need to be appropriate but cannot be rigid.
Of course there are people who just want to come and see a counsellor and not to get involved in chatting with others, and this is fine too. For a period you may just want to focus on yourself, and not to take on board others’ experiences.
THEME 2 - HAVING A RANGE OF APPROACHES TO ADDRESS FACTORS THAT OBSTRUCT WELLBEING
When people arrive at the Centre they all have in common an experience of cancer, but in other ways their life experiences and personalities are quite different, so it’s important to offer a variety of facilitative approaches which help to overcome or let go of what gets in the way of wellbeing – such as stress, anxiety, unexpressed emotions, sleeplessness and worry or practical problems.
To give a few examples of how stressors are alleviated:
a. information. It’s much better recognised now that a great proportion of people are helped by having access to information about their condition and its treatment, and the practical help that can be accessed such as benefits advice and grants.
People often can’t concentrate on anything else until basic questions are answered. Macmillan Cancer Relief enables us to share an Information and Education Officer with St George’s Hospital Tooting – which not only gives individuals access to info but also provides a good link with the team at one of the main local oncology centres.
The Information Service also gives access to practical help through applying for grants for individuals – without enough money for basic needs looking at other subtler aspects of quality of life isn’t very relevant.
b. intuitive massage is offered to:
In Jeremy Geffen’s book The Journey through Cancer, the chapter The Body as Garden talks about our body as a living, breathing organism that needs nurturing and care – what better way to do this than through gentle massage?
CRC’s publication Massage For People With Cancer is used by practitioners from all over the UK and gives guidelines for carrying out massage in a safe way in the cancer context. An updated version later this year will incorporate the results of the multi-centre research study on the impact of massage on people with cancer.
c. counselling
d. self help approaches are taught that give people more feeling of control:
At the Centre the role of nutrition is covered in occasional seminars. For a good discussion re role of nutrition in living with cancer, refer to Jeremy Geffen’s book, The Journey through Cancer (see page 8).
Social and cultural diversity
Diversity also needs to be looked at not only in terms of individuals , but also as it affects different groups within society. It may take different services to meet diverse cultural needs. The Centre has aimed to expand our horizons to reach out to groups of people who don’t spontaneously access on-site services at the Cancer Resource Centre.
1. HVS (Home Visiting Service).
In 1995 we initiated a home visiting service in order to support people who have become housebound. We put on an annual training course as an induction for new volunteers planning to work with that service, many of whom are already trained as massage therapists or counsellors.
The HVS sees a lot more of elderly people affected by cancer, and also a higher proportion of men, than our on-site services.
The Home Visiting Manual was produced after the HVS won the Nationwide Award for Voluntary Endeavour in 2000.
It incorporates a starter pack on a disc for organisations thinking of offering home visits by volunteers, so that ready made materials can be adapted rather than everyone having to do the groundwork of creating all the underpinning systems from scratch.
2. Asian and African-Caribbean outreach.
We have recognised that in order to be relevant to people from the range of minority ethnic communities in our area - which form about a fifth of the population - we needed to have outreach projects to find specific ways to reach different communities.
A needs assessment was carried out in the first six months of Asian outreach project, which showed us the kind of cancer awareness sessions we needed to organise in settings where Asian community members often go.
It also pointed to the need for cancer information in Asian languages, which is what stimulated the production of Understanding and Living with Cancer and Reduce your Cancer Risk in Gujarati, Urdu, Punjabi, Bengali, Tamil and Chinese. These publications are funded now by the Department of Health and Macmillan Cancer Relief, and are available free of charge while we still have copies. An order form can be found here.
THEME 3 – THE RECOGNITION THAT WE ARE NOT HUMAN DOINGS BUT HUMAN BEINGS
We all need time and space for ourselves in order to reconnect with our Being, our inner person, which we often lose sight of in a frenzy of goals and activities, and in response to external targets and pressures.
Services that provide a bridge to the inner person include meditation, visualisation, and spiritual healing. Some very ordinary life activities can also have this effect, such as cooking, gardening, walking, singing. Things that make us feel rooted and embodied also tend to put us back in touch with the richness inside us, and make us feel more fully ourselves.
I’m going to focus for a few moments on one of the Centre activities that acts as a bridge to the Being dimension.
Spiritual healing
Spiritual healing is a receptive experience, that reconnects us with the source of life energy within; restores balance; gives an expanded sense of our identity; and our interconnectedness with life, and the universal energy of love that fires it.
THEME 4- LISTENING TO OURSELVES
In order to be less thrown around by external responsibilities and more in charge of our life, we need to learn to listen to ourselves in a different way, to find our own authentic pace and rhythm, to give us stability in the face of whatever life throws our way.
To facilitate this, the Centre offers:
a. a transpersonal or psycho-spiritual model of counselling, which means that people can talk about problems at many levels, from very everyday problems issues that must be addressed, to belief systems collapsing; things not making sense any more; to needing to find a different way of understanding suffering and loss.
b. Barbara Siddall’s self discovery groups introduce a marvellous panoply of ways to find out about different aspects of yourself through breathing, movement, drawing, visualising etc. New and sometimes inspiring perspectives come into focus once people explore the magnitude and range of their intuitive and imaginative sides.
c. experiencing your creative flow is another way of developing a stronger sense of your uniqueness and value – "singing your own song", as Laurence Le Shan puts it in his book, Cancer as a Turning Point.
Activities like creative art work, using drawing, painting, pottery etc can help to bring creativity to the surface, and we offer a monthly creativity group for anyone who wants group support with this.
Expressing creativity doesn’t have to take a very dramatic form, however. It’s often a matter of doing something you’ve always wanted to do, but never made the time for it, or making time to develop an activity you enjoy but have been restricted with. For example, one of our clients still does his day job but is now devoting a lot more time to practising jazz and playing in a band, which brings him joy.
THEME 5 - COMMUNICATION
Being able to let people close to us know about what our real needs are often brings big improvements to life, yet people are often reluctant to burden others.
Being able to say no to pressures from other people is a frequent theme, since many people suffer from guilt when asserting themselves over against the wishes of others, or when asking for help.
With encouragement to take their own needs more seriously, rather than feeling selfish, people find the wherewithal to stand up for themselves better, and thereby increase their energy and ability to cope positively with the challenge of undergoing cancer treatment while continuing with life.
Many people confuse being selfish with taking good care of real needs, so some practice at separating these out comes in useful. It is important that the new assertiveness continues into the rest of life after treatment and that old patterns don’t reassert themselves. Having a clarity about what you are willing to do is a very helpful basis for ongoing wellbeing.
Groups
Experiencing all the painful and disruptive aspects of having cancer and the uncertainty about the future, often breaks through barriers that people have put up to heartfelt communication.
Cancer can give people access to a community of those similarly affected, where openhearted communication is part of the ethos, and this is where all our self help groups and support centres come in.
In the south east, women seem much more willing to engage in this kind of way than men, but there are many northern groups pointing the way to the future in this respect.
Broader dissemination
This conference has for over 20 years now played a vital role in enabling broader and broader communication and exchange of ideas – and it’s wonderful to bathe in all the love and support that’s unfailingly on offer here in Manchester.
This is all the stronger because the conference is created by people from self help and support groups and centres, as well as for us.
At the Cancer Resource Centre we have appreciated the sharing of knowledge and experience by other groups such as Bradford Cancer Support, whose benefits helpline is now helping us all, with backing from Macmillan.
We have also made an effort to share some of what we’ve learnt at the Centre through our programme of publications that are available nationwide – see www.pauldauriacentre.org.uk
For example, Communication and Cancer - a Guide to Giving and Receiving Information, intended primarily for people with cancer, was a direct response to the difficulties our Centre members were having in their communication in the medical setting, and suggests practical strategies for successful two way communication.
Humour and laughter are just as important as the serious aspects of communication – a knowledge that is 100% embodied in this conference and which is fortunately infectious!
THEME 6 - HAVING OUR FEET ON THE GROUND IN THE EVERYDAY WORLD
Most of the changes that will be significant in affecting our quality of life will be concerned with everyday life, rather than being transported to a super special place where ordinary problems are removed. It’s about making some changes to the way we approach our daily life, so as make the most of the opportunities that are there.
One example from a Centre member, whose comments on counselling went as follows:
"I wanted to improve the level of my daily activities, to be able to function better, to be able to discuss with my family things that I find challenging.
"As a result of the counselling I was able to express some of my requirements to one of my sons and ask for his help. With his assistance I was able to tackle some of the jobs at my home.
"The opportunity to discuss some of my deepest frustrations in the counselling was very helpful. Things that were very basic and simple, I felt dread, anxiety and distress about tackling them.
"With the counsellor’s gentle suggestions and promptings I was able to arrive at solutions and cultivate healthy thoughts and actions."
For many, sustained practices will need to be developed in order to maintain improved wellbeing – and that may be doing conscious relaxation exercises; physical exercise; paying attention to nutrition; taking time out from over busy schedules etc.
These things enable us to stay in touch with the wellsprings of energy and healing that we all have at our disposal in the closest at hand of places – within us.
THEME 7 - TAKING RESPONSIBILITY FOR OUR RESPONSES AND CHOICES
A big determinant of the quality of our experience is the approach we take when faced with a very challenging situation like cancer.
The Centre practitioners reflected back to me that the thing that really gets in people’s way is being caught in a passive why me? mode, feeling it’s unfair and that cancer is a punishment.
Beating yourself up because you think you’ve done something wrong that has led to being ill is also very unhelpful. It’s quite normal to have thoughts and feelings like that at times, but being unable to move beyond them and getting stuck in that mode prevents you from being able to respond in a constructive way.
Those who report the best sense of wellbeing tend to start from where they are and ask questions like, how can I go forward from here; what can I learn from this; what changes do I want to make?
There are two ways of being proactive that may fit different temperaments:
1. To work with the illness and ask what it has to teach me – a receptive mode.
2. To resist it and be determined to triumph over it - a fighting mode.
What doesn’t is the helpless or hopeless modes. The receptive and fighting modes are both successful in bringing energy and optimism.
Related to this shift to a more proactive mode, people who find new meanings and purposes in life also have a more positive experience.
People may have a change of career, finding that after a break they no longer wish to go back to old forms of work. On the relationship front, cancer sometimes precipitates action on situations that have been festering, so in the short term may there be breakdowns, but ones that lay foundations for more satisfactory futures.
THEME 8 - GIVING SOMETHING BACK
One of the things we’ve always very much enjoyed at the Cancer Resource Centre is the active involvement of our Centre members.
Of course for some people it is right to be on the receiving end of support and certainly to feel no obligation to do anything. However, for a proportion of our members, being able to be actively involved in helping the Centre has been as significant for their wellbeing as the therapeutic help on offer.
There are also opportunities now for people to make a contribution back into the health services through the cancer network partnership and user involvement groups.
Just one example of a Centre member, Peter, who died of cancer in his mid forties. Peter had had to give up paid work and come back to the UK. He joined the Management Committee and became one of the Committee’s officers.
Towards the end of his life he said to our Chair "It’s been a such a wonderful year."
He was referring to the way in which he had been able to exercise his skills up until right at the last moment, and feel he was a valued contributor to enabling the Centre to operate.
About a week before he died, by then bedridden, he sent his apologies for the committee meeting – the most meaningful apology we’ve ever received!
THEME 9 - BEING OPEN TO NEW UNDERSTANDINGS
As organisations, as well as individuals, it’s no good rigidifying our understanding, since there is always evolution, and the need to stay open.
I thought I would end by saying how pleased we are to have seen the new book Consciousness and Healing, Integral Approaches to Mind-Body Medicine, and to have heard Marilyn Schlitz, the editor, talk about new ways of understanding the role of medicine and healing.
According to Marilyn Schlitz, Integral Medicine is not just diagnosing treating or preventing disease, but is
"a medicine that heals. It is a dynamic, holistic, lifelong process…widening and deepening relationships with self, culture, and nature. Integral Medicine is about transformation, growth and the restoration of wholeness."
The key is held by the holders of the bag of treatments, whether medics or complementary practitioners. who must open themselves to the multidimensional nature of healing…
Her book is "a call to action aimed at both health professionals and patients, to help a more inclusive view of the person and of healthcare to be born."
If we want to expand the ways in which quality of life can be further improved, helping this integral vision of the person and of medicine and healing to become a reality is an excellent next step.
References
The Journey through Cancer. An Oncologist’s Seven–Level Program for Healing and Transforming the Whole Person.
Jeremy Geffen M.D.
Three Rivers Press - 2000
Consciousness and Healing. Integral Approaches to Mind-Body Medicine
Marilyn Schlitz and Tina Amorok with Marc S. Micozzi
Elsevier, Churchill Livingstone - 2005
Cancer as a Turning Point: A Handbook for People with Cancer
Lawrence LeShan
Plume - 1999