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A subject that no one wants to talk about

The Independent
Many cancer patients struggle to come to terms with the changes in their lifestyle and health, but discussing it can be difficult.

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“Please don’t say ‘you’re over reacting to your situation’, ‘It’s only you who feels like this’, or ‘It’s time you got on with your life’... Tell me instead that you cannot know what it is like living through this hell.”
Dr Cordelia Galgut: The Psychological Impact of Breast Cancer.

If the psychologist and breast cancer survivor Dr Cordelia Galgut retains a modicum of humour, it’s because she’s never been scared of telling it like it is. Eight years after she was diagnosed and treated for cancer, she’s been accused of wallowing in grief, of frightening other sufferers and failing to move on. “It’s a taboo,” she says. “Conventional wisdom says people like me aren’t walking round feeling angry, bitter and frustrated, but a lot of us are. I’m speaking the unspeakable and I can see the fear in people’s eyes.”

She’s felt in turns depressed, unsexy, bitter and at times transfixed by fear of her cancer returning - at her yearly checks feeling “like a lamb to the slaughter, facing death head on”. In her book The Psychological Impact of Breast Cancer, she explores the pressure for cancer survivors to put a brave spin on their situation when they least feel like it. “I don’t want to frighten people but I want to validate how it is, rather than how people want it to be,” she says.

More people survive cancer now than ever before - the median survival time for breast cancer has doubled since the 1970s, and the mean survival time of cancer has increased from one to 5.8 years since 1971. While long-term emotional fallout is common, it often remains unrecognised, say cancer charities. Patients and families alike often expect survivors to bounce back to their old selves once treatment ceases. But depression, anxiety, memory loss, difficulty concentrating, poor self-image and damaged sexuality can all strike after a patient has been successfully treated. Campaigners say primary health workers aren’t sufficiently aware of potential problems that might arise several years down the line, and little research has been undertaken into the longterm effects of living with cancer.

“The psychology of cancer is every bit as unpleasant as the medicine,” says Dr Mike Osborn, a consultant clinical psychologist for Macmillan Cancer Support. “Selfimage is dented, people talk about feeling dirty, ugly, and feel obliged to hide more difficult emotions.” Fatigue, he adds, has a huge impact. “It’s the first thing to come and the last thing to go.”

A Macmillan survey found that some 62 per cent of people living with cancer - and there are two million in the UK - have experienced at least one of these psychological conditions in the past year. At least 40 per cent of these people haven’t sought help or perhaps even recognised that the symptoms may be linked to their cancer. Problems such as depression are far more likely to arise in the year after being discharged from hospital care, but can be triggered years later. Women may mourn the loss of fertility, while couples can find it hard to rebuild a sexual relationship - as one psychiatrist put it: “It’s difficult to feel sexy with a colostomy bag next to you.”

Physically invasive treatments such as breast surgery, removal of organs and tumours can leave patients traumatised by their post- cancer bodies. “People get depressed when they feel they have no choice, when their back’s against the wall - it’s an illness you can’t control,” says Galgut.

“It’s a lonely road,” agrees Asma Chaudhry. She was diagnosed with breast cancer in 2001 and has suffered with depression on and off ever since. She, like many other survivors, struggled to make sense of her condition once the whirl of hospital care ceased. Survivors compare it to falling off a conveyor belt.

“It’s the uncertainty; you don’t have the security of seeing doctors and nurses who make you feel secure,” explains Chaudhry, who sought help for her depression from a cancer support centre. “You’re sitting at home with one word on your mind. Everybody says ‘be positive’ and it’s the one thing that you don’t want to hear. For me, it helped to keep busy.”

She was “lucky” to be referred promptly to a clinical psychologist for counselling and remains on a reduced dose of anti-depressants. Voicing her fears was therapeutic, especially as she’d felt obliged to remain upbeat in front of family.

“The more you don’t release your emotions, the more it depresses you.” But there’s often a waiting list of several months for counselling services and some patients are loathe to approach their doctor. Cancer charities offering psychologists and counselling pointed Chaudhry towards a range of support services that she found helpful. She also tried alternative therapies such as massage, reflexology and aromatherapy. “It’s a time I can be quiet, be pampered and not think about [cancer] for a while.”

Many survivors and sufferers of cancer believe that feeling unhappy is simply an inevitable result of the disease and there’s little that can be done. Not so, say medical experts, who recommend a combination of “time, talking and tablets”. Some charities, such as Breast Cancer Care, offer telephone counselling from trained volunteers, while GPs or oncology professionals may also be able to guide survivors to services relevant to the patient.

Not all counselling lends itself to helping cancer patients, says Dr Tamara Russell, a psychologist at Clinical Partners, a private practice. “CBT [cognitive behavioural therapy] isn’t particularly good - you can’t argue with yourself [that the cancer] might not come back. The reality is that some people might relapse.”

She recommends pursuing more psychoanalytical therapies, which acknowledge the negative thoughts without allowing them to take over. She has counselled many women who have struggled with self-image after gynaecological cancers and found it difficult to rebuild sexual relations with their partners. “This is crucial if you are working towards a full recovery - no matter what your age. You need to feel confident about your body.”

Dr Russell often counsels couples, because partners tend not to know how to respond and both sides can become disconnected from the body as a way of coping. “It’s very much ‘how can I be?’ or ‘what can I touch?’” she says.

Couples may take a long time to get themselves to therapy, but when they do, the process can be transformative. “I worked with one couple in their mid to late fifties who began to have incredibly open conversations about themselves they’d never had before the cancer came. It was a privilege to witness.”

Cancer, as one survivor says, is complicated. It’s not like breaking a leg, recuperating and having an x- ray show how you have healed. “You don’t get over it, you find a way to live with it,” says Dr Galgut. “You adjust to a different version of yourself. Death is a bit closer than it was. I’m a more genuine therapist because of it, but it has changed me.”

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