Caroline Carling, cancer survivor
In May 2011, aged 40, I was diagnosed with triple negative breast cancer. I kept up a smiling façade, avoiding my feelings through a lumpectomy, re-excision and gruelling chemotherapy. As I waited for radiotherapy to begin, I attended a local support group for young women with breast cancer. I felt isolated, and desperately wanted to feel ‘normal’; this seemed a good place to start. Yet I fled my first (and last) meeting, shell-shocked. A woman tearfully recounted losing friends she had made to ‘secondary’ cancers. Secondary cancers hadn’t even entered my head. I was petrified and felt totally alone. My body would not tolerate more chemotherapy. I was going to die.
I instinctively turned to my GP, and she encouraged me to try a course of antidepressants and explore counselling. A Macmillan Cancer Support nurse had suggested the hospital’s oncology counsellor, so, after radiotherapy ended, I took up the six sessions of counselling that were offered. Old issues reared their head, beyond the oncology remit, but I was not able to access long-term support for these complex issues. My breast-cancer diagnosis had magnified pre-existing issues: my maternal grandmother (my primary carer) died of breast cancer when I was 10. Her prosthesis, scars and morphine-induced confusion left me scarred – for more than 30 years I had avoided touching my breasts, avoided close relationships, and lived with an absolute certainty that I, too, would have breast cancer as an adult.
Oncology counselling gave me space to talk through relationship changes and my fear of a bilateral mastectomy. But now, struggling with my menopausal state and mortified that I would lose my breasts, my vestige of femininity, I felt overwhelmed. I had no idea where to find a suitably experienced counsellor or psychotherapist. Now, my only source of support was my GP.
For a year, I worked with self-directed art therapy and journalling; then I self-referred to the local IAPT service. Frustrated by not living a happy, full life, I wanted to be out in the world. After a six-month wait, I began CBT image rescripting sessions, focusing on body issues, childhood sexual abuse and the loss of my grandmother at a young age. After 16 sessions, my PHQ and GAD-7 scores had dropped from 18 and 20 to two, and my GP agreed to a phased withdrawal from antidepressants. I noticed I expressed myself in different ways and could ‘feel’ a range of emotions. My relationship with my long-term partner improved and I gained confidence. I was accepted onto a BSc (Hons) psychology programme. Cancer was a distant memory, apart from intermittent post-treatment pain.
Subsequently, just four months later, my world imploded when my father-in-law was diagnosed with terminal non-Hodgkin lymphoma. All the emotions I believed I had dealt with came flooding back. As a patient, I had felt a semblance of control over my destiny, but being a carer meant having to accept that I had no control.
This time I chose to work through my sadness and grief without medication. I self-referred again to IAPT and, after a three-month wait, have begun counselling again. Through this, in combination with my own creative tools, I am learning to accept it is my right as a human being to be sad, to feel angry, to feel frustrated and to be scared. I am resilient, I am powerful and I am perfectly OK just the way I am.
Caroline is a passionate cancer and mental health advocate, a certified creativity coach, a laughter yoga and chakra dancing teacher, and a BSc (Hons) psychology student. She aims to do less, better
Anne Crook, oncology counsellor
As an oncology counsellor/psychotherapist working in a psycho-oncology service at a tertiary cancer hospital, I see people affected by all cancers, from diagnosis through and beyond treatment. Despite rising need, access to specialist psychological support for people affected by cancer is inconsistent across the NHS. There is no standard service model in the UK. Most oncology centres have some clinical psychology provision, and a few may employ a counsellor. However, the majority of people who access oncology counselling do so through self-referral to third-sector cancer support centres.
My counselling colleague and I are fortunate in being able to offer therapy interventions tailored to the client’s needs. A brief piece of work (six to eight sessions) may be all that is necessary for someone to talk through and process the cancer experience once treatment has ended. More complex issues may need a longer course of therapy, while someone facing terminal illness may benefit more from having sessions when they feel they need them.
I initially trained in psychodynamic therapy, and this continues to inform my thinking. However, I have added a variety of techniques to my skill set over the years. CBT is helpful for anxiety issues and fear of cancer returning; systemic approaches are helpful for couples.
A recurring theme in cancer is loss – from loss of trust in one’s own body and physical health to loss of control over life and independence. Physical losses, such as loss of hair, energy, concentration, fertility and sexual function, all contribute to the person losing touch with how it feels to be ‘me’. Grief often occurs when treatment is completed – grief for the person they were and the life they led before the cancer diagnosis and treatment. So much in the person’s life will have changed, and counselling can help them process and integrate these changes, and make the psychological adaptation necessary to live with the impact of cancer.1
Jenny’s story
‘Jenny’ (she is based on the stories of many of the women I have counselled) was 34 years old when she was diagnosed with cancer of the cervix. Her specialist nurse at the hospital referred her to me for counselling after Jenny became tearful at a follow-up appointment, two months after her treatment had finished.
The first counselling appointment maybe the first opportunity for someone to tell the story of their diagnosis and treatment. Jenny was admitted to hospital as an emergency after having made several visits to her GP because of persistent, heavy vaginal bleeding. She thought she had fibroids, like her mother, and was very shocked when she was told that she had cancer.
She was treated with a combination of pelvic radiotherapy and weekly chemotherapy over five weeks. Her treatment was completed with brachytherapy, where radiotherapy is delivered through the vagina. She said she felt as if her body had been invaded by both the tumour and the radioactivity.
The physical side effects of treatment may continue long after treatment has ended, and may bring further psychological challenges. The radiotherapy gave Jenny loose bowels; she had hot flushes, poor memory and other symptoms of a premature menopause. She hated feeling so vulnerable and was angry that her body felt so out of her control.
Jenny described herself as a strong person to whom her family and friends looked for help in a crisis. Her approach was ‘to get on with it’. It was only now, hearing herself tell her story, that she began to appreciate the enormity of all she had gone through over the previous six months.
Jenny felt that, although they had been very supportive, her husband Paul and her friends had put her under pressure to get ‘back to normal’. She said she didn’t know what ‘normal’ was any more. She felt disconnected from her old self and her roles as partner, mother and ‘the strong one’ of the family. She avoided collecting her seven-year-old son, Ben, from school and turned down social invitations in case anyone asked her how she was. She did not want to be defined by having cancer, and yet she could not think about anything else. It helped when I told her that these were all common feelings and experiences for someone affected by cancer. As with bereavement counselling, normalising feelings is an important first step in therapy. I recommended The Cancer Survivor’s Companion,2 a book for people who have completed cancer treatment.
A life-threatening illness such as cancer brings with it increased uncertainty and loss of security in the future. Jenny had previously been an optimist by nature, but now she became preoccupied with worries that the treatment had not eliminated all of the cancer cells, or that the cancer would come back. Paul wanted to plan a holiday, but she thought this would be tempting fate. I offered some psycho-education about anxiety. Simple CBT-type interventions, such as relaxation techniques and rehearsing how she could manage conversations about her illness, helped her overcome her reluctance to meet Ben from school and plan a holiday.
When she described herself as she was before the cancer, Jenny talked about her sense that she had to be strong for others. Throughout her life she had kept her worries to herself for fear of upsetting others and because she did not want to be seen as weak. By talking about this, Jenny came to realise that she could not carry on as before, and that she needed to tell Paul if she did not feel right.
Couples talk about getting through the experience of cancer together, but illness, unlike most of the challenges they face in life, creates a separation that can isolate each partner. Jenny and Paul had been trying for another baby when she became ill. She was now unable to have another child. They had argued when he wanted to clear the baby things out of the attic, and had not talked about it since. It was a relief to both of them when she told him how devastated she felt about losing her fertility, and they cried together. It felt like a turning point and she opened up about her dislike of how her body looked and how unsexy she felt. Paul also began to talk about how scared he had been, and they began to think of themselves as a team once more.
A chance to talk
The six counselling sessions gave Jenny the opportunity to talk about and process her experiences. She valued her feelings being normalised and gained relief from just talking about them.3 The therapy space enabled her to think about cancer in the context of the rest of her life and to realise that she was still strong.
I referred her to the Macmillan Cancer Support website, where she found information about her employment rights, which gave her the confidence to negotiate a phased return to work. She went to some group meetings organised by a cervical cancer charity, and met other women, which helped further lessen her isolation.
Jenny was also able to reassess her expectations of herself as always having to be strong for others. She discovered that those around her could also be strong when she was feeling vulnerable. She was surprised to realise that, despite the changes in her outlook on life and the ongoing uncertainty about the future, some good had come from it all.
Anne Crook is an oncology counsellor/psychotherapist at The Christie NHS Foundation Trust, Manchester.
Jane Fior, independent counsellor
‘Seeing a counsellor’, for most people, implies that there is a problem and that talking to a therapist may help to fix it. In many situations, the clarity that comes from talking to someone does help fix things. However, supporting someone with a life-threatening illness requires a slightly different mindset. I think the task of the cancer counsellor is closer to that of a midwife. Of course, we expect midwives to be skilled in their practice and to know what to do in an emergency, but the labouring mother needs to know that she is safe and intuitively held. Can we provide that, and be a strong, trusted companion through hard times?
My first training was short and intensive – basically, a counselling skills course with a specific slant towards the needs of cancer patients, run by a voluntary agency. On successful completion, we formed a team of volunteers to provide short-term support to clients who were mainly referred to us by the charity’s specialist helpline.
My first client was a frail, elderly man, who was helped into the room by his younger companion, who then left and sat outside. Feeling on trial, I asked some preparatory questions. Then he suddenly said: ‘If I die tonight, where will I be tomorrow?’
It was a real question, asked by someone who was deeply fearful and who wanted an answer. But it was an impossible question. I felt I couldn’t seek refuge in one of the manoeuvres we had been taught and just ask him where he felt he would be. I somehow had to give a truthful response. At the same time, I couldn’t impose my own view, if I even knew what that was.
I said: ‘I don’t know what will happen, but I do believe you will be all right.’ He then said he was very weary and needed to leave. As soon as he had gone, I went out onto the landing and burst into tears, and the administrator of the service said she wondered if I was suitable for this work.
I have never forgotten this encounter: it could not have been a better introduction to what would be needed of me.
I did more training and gathered more skills, and, in due course, established a private practice, as well as continuing to work in a specialist team. This has meant that I can now see people for as long as needed, so, as well as attending to the very real initial emotional impact of a cancer diagnosis, I can explore with my clients in greater depth and breadth how previous trauma has been ignited by their cancer diagnosis and is influencing how they are facing the present.
Enveloped in care and love
I would dearly love to talk about my clients here, but I am bound by confidentiality. Here is an example that I can use without subterfuge. Three years ago, I was diagnosed with cancer. Through my work, I knew about cancer grading and staging, treatments and outcomes. Through my clients, I knew about fear, anger and vulnerability. Now it was my turn to experience just how total and acute that fear is, and what it feels like to be enveloped in care and love: to have the support of my family; to have my hand held by good friends; to trust my consultant, and look to the night nurse for comfort when I was awake and afraid. From the outside, my state could be described as regressive and institutionalised, because I became totally dependent. However, for me, this period of acute illness felt blessed, and, when I finally left hospital, I felt euphoric. This lasted for a year. Then I became suddenly depressed, angry, difficult and hurt. The cushioning and healing of all that love seemed to evaporate, and the feelings of the five-year-old who has lost her mother resurfaced. It took another year for me to understand this.
Working with cancer patients is a privilege. Our skills are essential, but what is required of us is our willingness to love, to be overjoyed when things go well and to be deeply hurt when they don’t. The job description is to be a skilled human being, rather than a specialist professional.
Key issues to consider
- Provide a space for the client to tell their story.
- Educate yourself about cancer/treatments using information on charity websites.
- Ask about the physical impact of cancer and treatment, and body-related changes, body image and sexuality issues.
- Assess for trauma, anxiety (particularly avoidance and health fears) and depression. What were they like before the cancer?
- Ask about the impact on their relationships with family, partner and friends.
- Be flexible in your counselling approach – draw on relevant models for the client’s needs (such as CBT for anxiety management).
- Be flexible about timings of sessions – they may need to cancel because of illness or other treatment appointments.
- Suggest further sources of practical support and information.
Jane Fior has specialised in working with cancer patients and those close to them for the past 26 years, in both agency settings and private practice, having previously worked in publishing.
References
1. Brennan J. Cancer in context. Oxford: Oxford University Press; 2004.
2. Goodhart F, Atkins L. The cancer survivor’s companion: practical ways to cope with your feelings after cancer. London: Piatkus; 2013.
3. Omylinska-Thurston J, Cooper M. Helpful processes in psychological therapy for patients with primary cancers: a qualitative interview study. Counselling and Psychotherapy Research 2014; 2: 84–92.