Originally published in Issue 2 2006 icon
Three cheers for the US cancer hospital whose posters announce: ’If you’re anything less than a B plus, let us know and we’ll give you a hug.’ Nearly everyone touched by cancer hits lows of C minus, even D, when the need for soul medicine is urgent and extreme: at such times counselling, the ’talking therapy’, may best fit the bill.’ When my 27 year-old daughter was suddenly diagnosed with a condition that makes benign but deeply damaging tumours on the nervous system, I longed for some two-legged wise owl to extend a sheltering wing - someone to offer Sally a positive, therapeutic handhold through the loss of all things carefree, and the dangerous, double surgeries ahead.
Despite being a counsellor myself (specialising in couple work), I was, as a parent, ineligible for the job by definition: ’I can’t bear the pain in your eyes’ said Sally, though I tried to look buoyant. Friends ringed her with love, but Sally wanted to have fun with them still, not dark, tearful discourse on issues that few of her age group could, or should, understand. Seeking help for the whole family, I phoned the relevant support organisation where a so-called specialist counsellor announced carelessly down the phone that patients like my daughter were invariably deaf - stone deaf - within two years. In that moment of unsought and devastating information-giving I felt so unsupported and let down, that I might have dropped 60 foot down a lift shaft. If this was therapy, better a weekend by a warm pool!
For Sally, at that stage, a single hour of validation was enough
Sally’s outcome was thankfully not as predicted. But her traumatic three years might have been greatly eased by skilled counselling from a practised professional. I should not have given up the search at the first duff encounter. Dr Marianne Fitzgerald-Klein at the Bristol Cancer Help Centre is one psychotherapist who sees diagnosis not just as darkness but as opportunity: ’It’s also a wakeup call that takes you to a very deep place where you actually have to reconsider what you are doing with your life. It’s important to recreate with our clients what makes their hearts sing. This may be giving more space to relationships or something everyday like walking in nature. One man who had never read a book began taking great pleasure in reading. A woman who had given up dancing to raise her family suddenly realised how much she had been missing movement and now wanted to take that forward.’
Marianne’s healing empathy sounds just what our family wished for, but failed to find. Much further down the line Sally did see a counsellor at her GP surgery. The first session gave her space and time to tell her story, whereafter the counsellor observed that she appeared remarkably intact given all that she had been through. For Sally, at that stage, a single hour of validation was enough. Someone totally impartial had listened attentively to her tale without bursting into tears or shuddering ’How unbearably awful.’ She came away feeling good about herself and started a new business shortly afterwards.
Counselling - Recommended But Not On Offer Right Across The Board
The WHO also sees cancer counselling as a desirable part of every care package
So the right help is out there, though geographically patchy, and still rather too hard to access. Some hospitals - like the Christie - offer free oncology counselling. Some areas are richer than others in accredited counsellors with long experience in serious illness. The BACP (British Association for Counselling and Pyschotherapy) can direct your search and advise what you can expect to pay. Current NICE guidelines actually recommend that specialist cancer counselling be made available for all patients (and their families) with advanced stage cancer. But the recommendation also recognises that provision is not currently in place. The World Health Organisation also sees cancer counselling as a desirable part of every care package.
I wish I had known, five years ago, of the Cancer Counselling Trust, in Islington London. Unique of its kind, this charitable Trust funds eight counsellors to provide a national service for cancer patients and their families. All of these counsellors worked originally with CancerBACKUP; all are qualified, and one was previously an oncology nurse. Says CCT counsellor Jane Fior, ’The first thing you can expect from our service is greater clarity about the situation in which you find yourself. By the end you would be clearer about how you want to respond as opposed to how others want you to respond. A client’s experience with us would help him or her make their own meaning out of their situation.’
It’s normal and their response is a very common one
Since treatment often comes very quickly on the heels of diagnosis, Jane perceives that many people are in a sense of shock even if their prognosis is extremely good: ’They manage to get through all treatment and find only when it’s over that the real impact of what has happened to them, and what it means to them in terms of insecurity about the future, really hits them.’ CCT counsellors, says Jane, work very much on an individual basis: ’How one person will experience fear and how they would best like to have that acknowledged and contained may well be very different from another’s. Many people come at a point when they just need to talk everything through with somebody who understands why they feel as they feel. When people first ring and talk to our Co-ordinator they often say they feel they are going mad, because they are so anxious and agitated, assaulted by thoughts and fears. So there’s a real role for letting them know that’s OK, that it’s normal and their response is a very common one.
’A patient may not want to admit their fears to anyone close them because they feel the need to protect those they love, which only magnifies their sense of isolation. Sometimes people feel very overwhelmed by the whole environment and business of hospital. They may want to ask questions but don’t know how to set about it, or ask for time.’ Strong feelings can find expression and relief in a safe, confidential counselling setting: ’Why shouldn’t you feel angry if cancer has struck out of the blue and you have already had a pretty rough hand in life’ Jane reflects. ’It’s also very common to feel disempowered , which may affect you in different ways. You may feel unable to speak up for yourself, or cross to the point of aggressive which then invites a defensive response. Rather than offering a solution, we unpick what is going on so that the client can help identify and change it for him or herself.’
Family and friends in turn may be dealing with their own fears
With cancer, says Jane, loss of immortality is a fact, ’and to feel able to talk about that is often a very great relief. Many people don’t discuss this with their loved ones because they don’t know what the reaction will be and you can be really disappointed. Family and friends in turn may be dealing with their own fears by not speaking about them either. We’ve all heard of people who have had friends cross the road to avoid them rather than talk. If the prognosis is not good, you might well feel silenced from wondering at home, what will happen to you next, or where you might go.’
For Jane Fior, there is nothing that can not be aired once trust builds up between counsellor and client: ’My first ever client said "I’m here because if I die tonight, where will I be tomorrow? This question allowed us to talk about his fears and look at what had gone well in his life and for what he hoped to be remembered.’ For many people, especially the young, the side effects of treatment may feel catastrophic: ’It can be very hard indeed for someone to cope with compromised fertility when you are only 22 and your peers are beginning to pair up. If you have had a gynaecological cancer you may feel really unattractive, struggling with all the side effects of an early menopause or treatment may have affected your vagina so you don’t even know if you can make love.’
Counselling Brings Confidence
She took the risk she had rehearsed with me
But hot sweats do not define you. A good counsellor may lead you to the realisation that they are only a small part of who you are. Says Jane "If you feel that you are in some way unacceptable, there is often the danger of hiding yourself away, writing yourself off socially. But talking things through with someone who clearly doesn’t think you are unacceptable helps you begin to feel more confident and so set the ball rolling for change. One young person I worked with in this way was then able to go off, meet somebody and actually tell them what had happened to her. She took the risk she had rehearsed with me - and found she didn’t meet the rejection she’d imagined.’
Deep Work With Mind-Body-Spirit
Marianne Fitzgerald-Klein sees that any diagnosis to which some statistic about life expectancy is attached is bound to be traumatic ’even though statistics don’t mean very much on an individual basis. But we need to debunk the message that has been given to the unconscious and inspire people to feel that there is a lot they can do to help themselves. ’ She believes in digging deep to find what brings a person joy, in stimulating the healing power of creativity, fun and laughter.
What they offer is
care
There is a body of opinion suggesting that unresolved conflicts or past traumas could trigger cancer in those already predisposed. Can counselling key into these conflicts and bring healthful relief? Marianne thinks it may, but that one needs to be very careful not to retraumatise people by asking the inexcusable and wrongthinking question, "What has brought you to the point where this cancer has appeared." Some work, she observes, is now starting to look at how past traumas, long kept undercover, can predispose people in a certain way to serious illness. ’What’s more interesting’ says Marianne is that release of past trauma - the expression of repressed emotions can lead to a great step forward and really help the healing process.’
Not Curing But Caring
Neither Marianne and the Bristol team nor Jane and her CCT colleagues, work in the medical sense of seeking to effect a cure. What they offer instead is care, a word whose root, Jane observes, lies in the Gothic word for sorrow and lamentation. ’Most counsellors’ she sums up ’would say what they want is to be alongside, to understand and truly care for the person they are with and the situation in which that person finds themself.’
BACP
(The British Association for Counselling and Psychotherapy)
Add: 35-37 Albert St, Rugby CV21 2SG
Tel: 0870 443 5243
Email: [email protected]
Web: www.bacp.co.uk
The BACP can put you in touch with registered, qualified and (if available) cancer-specific counsellors in your area. Send for their free fact sheet ’Support for Cancer Patients and their Families or download from their site.
BACP information team tel: 0870 443 5252; e-mail: [email protected]. You can also search online for an accredited counsellor using the BACP website.
The Cancer Counselling Trust
Add: 1 Noel Road, London, N1 8HQ
Tel: 020 7704 8620
Email: [email protected]
Web: www.cancercounselling.org.uk
The Cancer Counselling Trust is the gold standard organisation for patients, families, friends and caregivers. The Trust offers nine free sessions with specialist cancer counsellors which may be repeated at any critical point in the cancer journey: diagnosis, recurrence, palliative care and bereavement.
For anyone outside London or unable to travel, telephone counselling is also available. CCT medical advisors include Dr Jeffrey Tobias and Professor Karol Sikora.
The Mulberry Centre
Add: West Middlesex University Hospital, Twickenham Rd, Isleworth Middx TW7 6AF
Tel: 020 8321 6300
The Mulberry Centre, on the site of the West Middlesex Hospital has four part-time counsellors offering six sessions to anyone in treatment - not necessarily at the West Middlesex itself. ’I had a lovely guy who used to come and see us by Eurostar’ says Rita Wilson, Cancer Information Officer.
The Haven
Add: Effie Road, London SW6 1TB
Tel: 020 7384 000
Web: www.breastcancerhaven.org.uk
Among a range of excellent services, The Haven offers tumour-specific counselling to women with breast cancer.
Bristol Cancer Help Centre
Add: Grove House, Cornwallis Grove Bristol BS8 4PG
Tel: 0845 123 2310 (office hours - 24 hour answerphone)
Email: [email protected]
Web: www.bristolcancerhelp.org
Bristol Cancer Help Centre two and five day courses include individual counselling or psychotherapy sessions. All course group work is led by a senior psychotherapist.
Says Bristol: ’We encourage people to be nurtured and cared for at a very deep level, emotionally, physically and spiritually. The self-help plan we help individuals devise might include further work with a counsellor or therapist back home. Through our helpline which has a 24 hour answering service we can recommend support groups professional practitioner organisations. All these would be properly qualified and have experience in the cancer field.
Maggie’s Centres
Web: www.maggiscentres.org
Cancer nurse Andrew Anderson at Maggie’s Centre, Edinburgh sees counselling as offering a confidential and anonymous forum to explore what patients are experiencing, make sense of that and develop strategies for feeling differently about the experience. Beside one-to-one, monthly group sessions are held for young people with cancer: ’the sense of abandonment and isolation people experience is very disturbing to them, even in hugely supportive families. To talk honestly in a group where you don’t feel out of place and no one will be shocked helps change loss and hopelessness into determination and optimism regardless of clinical circumstances.’
Two books to soothe and settle the spirit:
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The Anatomy of Hope: How People Prevail in the Face of Illness by Jerome Groopman.
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Peace, Love and Healing by Bernie S Siegel.