‘You seldom heal… you live with cancer’

In 2004 Cordelia Galgut was diagnosed with bilateral breast cancer. As a Chartered Psychologist and registered counselling psychologist and therapist who has been in private practice for the last 20 years, the old cliché 'Physician, heal thyself' loomed large. When I interviewed her, she had recently been in hospital with sepsis, a long-term effect of breast cancer treatment on her immune system.

Cordelia's experience has created an internal conflict between conventional scientific wisdom and her lived experience of breast cancer. She wanted, she said, to explain this to psychologists dealing with any client or patient crisis, not just cancer, and to question accepted professional practice.

'I was born in Liverpool in 1955 and moved to London when I was 12,' Cordelia tells me. 'I was bright but was told, like a lot of bright girls at that time, that I should be a teacher or a nurse rather than a doctor or a scientist.' Cordelia went to a grammar school in Liverpool, but remembers her male teacher's first words at a physics lesson were, 'Of course physics isn't a girls' subject!'

On arrival in London, her mother, a committed socialist, wanted her to go to one of the new London comprehensives rather than take up her place at the local grammar school. Her mother and father hadn't discovered that it was a sink school: most of the bright children had taken up places in grammar schools. It wasn't until Cordelia changed school in the sixth form that learning became easier and more enjoyable. However, the idea that girls weren't really meant to be too well educated or to speak out was always in the back of her mind.

She got a place at university, studying English and French. The English was very unimaginatively taught so she changed to psychology: 'It was disappointing that I didn't get on with English, as I'd wanted to be a journalist, but I was interested in the workings of the mind, too. After my first degree, I ended up doing a PGCE in French, then taught French for 16 years, including running a French department… I'd just drifted into the profession, really.' She smiles wryly. 'The main reason I did the PGCE at Sussex and in French was to please my boyfriend and also my mother, who was a French teacher!'

At the age of 27 Cordelia fell very ill in Greece with some sort of virus. 'I didn't know at the time that I had been born with a part of my immune system missing. I can't throw off infection well. This effect has been made much worse by cancer treatment.' However, Cordelia did recover enough to keep working and became an advisory teacher. A couple of years into the job, she contracted another virus ending up unable to work and lying flat on her back for around two years. Medical people dismissed her condition as psychologically induced: one GP told her she thought it was caused by Cordelia's depression at being a lesbian! 'I identify as bisexual though my partner of 33 years is a woman, so to that extent I am a lesbian. I didn't believe the GP's explanation at the time nor do I now.' But lying on her back gave her time to reflect, fuelling the crusading spirit evidenced in the rest of our interview.

After a couple of years, once her brain fog had cleared enough, she decided she had to do something, so signed up for a basic counselling course at City University having been retired from her advisory job. 'The City University approach was person-centred, a refreshing shift from the psychoanalytic, medical model of my original psychology training. I then got onto a competitive PGDip in Counselling at UEL in 1994 before going straight on to an MA. This started my academic career proper, which has had the effect of finally laying to rest ghosts from my childhood and schooldays. My research was on attitudes of counsellors and psychotherapists to lesbian and gay clients. The data from this study revealed significant pathologising of lesbian and bisexual clients by their therapists, so I decided to go on and do a DPhil to look at the issue the other way round: lesbian and bisexual clients' experience of counselling and psychological therapies.' At the time, there was a lot of resistance within the counselling and psychology world to this line of research and the journal Counselling turned down her article on the results of her MA research, saying they wouldn't publish that kind of thing!

By 2004 Cordelia had 10 years' plus experience in supporting people in crisis, including clients with breast cancer. 'And I thought I knew it all. But when I started going through breast cancer myself, I realised my clients had been very polite in not pointing out my lack of understanding. Patients fear censure and the power balance is in the favour of healthcare professionals. At the time, my approach didn't really encourage clients to tell me how they felt about my approach. It does now!'

In her excellent book Emotional Support Through Breast Cancer: The Alternative Handbook (Radcliffe Publishing, 2013), Cordelia addresses a number of myths about breast cancer. These include:
I    'It was a year ago. You should be moving on by now.'
I    'These days chemotherapy and radiotherapy are easy treatments to cope with.'
I    'Shock doesn't last long.'
I    'Relationships don't change as a result of breast cancer.'

The issue that kept coming up in my conversation with Cordelia about cancer was time. 'The effect of breast cancer and its treatment doesn't stop after a year. If you feel grief, fear of death or recurrence beyond that point and enduringly, you're deemed not to be reacting "normally". You can be subjected to the pathologising attitudes of doctors and psychologists. I certainly know of psychologists and doctors who have kept their cancer diagnosis and ongoing problems private, for fear of this kind of judgement. They even give up work, but don't feel able to explain why! I think that's an issue we need to confront within our profession!

One of the myths Cordelia addresses in her writing is the idea that there are set stages of grief that all or most people pass through after a trauma. One version of these is shock, denial, anger, depression, acceptance. 'This doesn't help,' Cordelia says. 'I have never heard anyone say they go through these stages in sequence. They can go back and forth between them and experience them in parallel or not at all! However, people's stress levels can be increased massively by pressure to follow these stages, because to do so is deemed normal. Not responding as conventional wisdom says we should can make extreme trauma even harder to bear. That was my experience and that of many others to whom I've talked and who have written to me over the years.'

We tend not to realise that cancer treatments can go on for years. Cordelia commented, 'My treatment went on for months, and then I had four years of hormone therapy involving injections in my stomach every month. The needle was as thick as a nappy pin and deposited a pellet in the subcutaneous fat of my abdomen; it has left scars that have affected the nerves in my legs as well as creating other nasty side-effects. But I kept getting told "You're over it, you're all right". In fact, you seldom heal. You live with cancer, not least fear of recurrence. This seems to get worse over time, not better. Treatment effects also appear to get worse over time – for example, radiotherapy damage which is wide-ranging. This is a largely unspoken problem, because those of us who survive are often told, "You're lucky," and we are. It's hard to speak out, even if the quality of our life is awful.' The medical profession is wary of discussing this issue openly, though it is acknowledged behind closed doors!

Cancer has questioned Cordelia's attitudes as a psychologist and therapist, and more generally. 'Psychologists and other support workers are people as well. Having a diagnosis of breast cancer – or experiencing any trauma – poses a number of questions. Do they continue working? Do they disclose what's happened to them? Does their own experience affect – even damage – patient/client relationships? A lot of received opinion would suggest the model is not to disclose, to keep a neutral stance, not to risk crossing boundaries and not to practise if you are not "recovered".'

Cordelia addresses these questions with characteristic forthrightness. 'When I was diagnosed, I asked clients if they wanted to know why I needed to take a break. Most did want to know and to continue with me. Of course there were gaps, but I was able to keep going for the most part, and I discovered that the experience was making me more open as I grappled with, for example, agonisingly itchy skin during radiotherapy. I obviously had to disclose why I needed to scratch my breast and the feedback I got was that my clients were sorry I was going through this, but that my obvious vulnerability and humanity helped them accept theirs. Reactions such as these were a big surprise to me and have contributed hugely to a shift in the way I work with my clients. I'm much more real now, much more transparent, always, of course, with the proviso that I respect what is right for my client.'

Cordelia is all too aware of the dangers of talking about these things, in this way. 'I've written mixed-genre books. Some of what I say hasn't always gone down well with medics and psychologist colleagues and I've been told "you need to be either a psychologist or a patient to be taken seriously", as if we can't move between the two comfortably and ethically. When I went on Woman's Hour as the psychologist/author I worried about disclosing things about myself so publicly. Again, these are issues that should be talked about more within our profession.'

Are psychologists too bound by research data? 'Data can provide useful pointers and generate interesting topics for discussion, but can be red herrings. Evidence-based practice is necessary, but I wonder whether, for example, non-formal interview data and word-of-mouth testimonies can often give us more reliable insights into patient experience than formal research. It is assumed that, for example, a researcher who has had breast cancer has too much insider bias to generate accurate data when interviewing another person with breast cancer. However, we hear from women over and over again that they will hold back with an interviewer unless they know that person has had relevant experience; interviewing skills are of secondary importance. Furthermore, a researcher who approaches an interviewee in a medicalised, pathologising way (as seems to happen too often in, for example, the field of psycho-oncology) can easily miss what is under their nose, because their entrenched attitudes and unquestioning acceptance of the theoretical status quo get in the way.'

Cordelia is embarking on a new book whose theme is 'survived cancer but at what cost?'. At www.emotionalsupport throughbreastcancer.co.uk she asks those who suffer ongoing effects from cancer, emotional or physical, to contribute to the book.

Let me close by thanking Cordelia for her honesty and insight, and quoting from one of her poems which is reprinted in her Emotional Support book:

Tell me instead that you have an open heart
And an open mind,
That you'll listen,
That you'll try and understand,
Even when what I'm saying sounds preposterous to you.
It is my reality.