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Experiences of living as a cancer survivor

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Cancer survivors have highly specific needs, and follow-up services must address these, says Ingrid Torjesen

Follow-up services for cancer survivors need a radical shake-up, according to Macmillan Cancer Support.

The charity believes that follow-up services must be more targeted at those people who are in most need, while ensuring that anybody can get back into the system when they need to. Survivors will have care plans that meet their clinical, informational and emotional needs. This will enable them to self-manage their condition as fully as they wish to.

‘Follow-up is currently seen by patients as the way that any recurrence of their cancer will be detected,’ says Stephen Hindle, cancer survivorship programme lead at Macmillan Cancer Support. ‘The reality is that the vast majority of recurrences happen between follow-up appointments, patients spot something different with their body, and they need to be able to get specialist services immediately.’

‘We would like to see a system of prioritisation, called risk stratification, where patients
who are most at risk, both clinically and emotionally, are given more support but that everyone is supported to the level that they need.’

Macmillan wants all patients to receive a standard assessment at the end of treatment that looks across all the domains of a patient’s life. This would lead to a survivorship care and support plan, which would be revised on a regular basis. This would address any clinical needs, identify any emotional or practical support required and refer the survivor to a self-management programme, highlighting appropriate support groups. It would also assess the carers’ needs.

‘One of the real issues for people is that because they know they have had cancer, any pain or symptom makes them fear that it is metastatic disease. It is a hugely worrying time’

Cancer survivors say they need support dealing with practical difficulties, advice on benefits and returning to work. They want more information about the effects of cancer on their sexuality, libido and body image, and also need support on handling relationships with their partner and/or family. Macmillan wants nurses to be able to signpost survivors to such information.

A survey by Macmillan found that only a small proportion of managers realise that the Disability Discrimination Act applies to people who have had cancer. While most managers want to support people with cancer, the majority don’t know what to do for the best. Macmillan is working with vocational rehabilitation organisations to develop guidance for employers and on a possible national vocational rehabilitation scheme.Incorporating a self-management programme into follow-up not only enables survivors to make as many of their own decisions as possible, it also acts as a support network.

‘Self-management can empower people to take more control of their lives, and to minimise the fear and anxiety that some people feel,’ explains Mr Hindle. ‘One of the real issues for people is that because they know they have had cancer, any pain or symptom makes them fear that it is metastatic disease that has spread. It is a hugely worrying time for people.’

As adverse effects of treatment may only become apparent many years later, any information patients have received at diagnosis and treatment is likely to have been forgotten. Macmillan wants to see information-sharing improved and a system developed where the treatment the patient has been through, and its potential consequences, is flagged with the GP.

Some groups, including children, adolescents and young adults, have very specific needs. These include how to maintain or get back into education and issues around self-image and confidence, as looking different and not being able to join in can be especially difficult for them. Fertility issues may also be more relevant as well as the potential long-term effects of treatment.

Mr Hindle says young people need support in getting their first job. ‘It’s hard to find work when you have had cancer, even harder when you’re looking for your first job.’

Frank was vice principal of a north London college when he had a generalised epileptic seizure in 2000. He was diagnosed with a low-grade glioma and had a brain biopsy. Apart from the exhaustion, the epilepsy was the major change to his life, meaning he had to take anticonvulsants, had frequent partial seizures and had to give up driving.

In 2005 he had another seizure, and a biopsy revealed the tumour was now high grade. He took ill health retirement and underwent chemo and radiotherapy.

Frank had been treated privately, so owned the paraphernalia associated with his treatment, including a cast of his head and he decided to do something creative with it.

The result was an art installation. Ripples is a collection of 35 plaster heads of his family, friends, ex-colleagues and the health professionals who treated him.

‘Ironically it has provided me with a route back to the thing that I love doing most,’ he says. ‘I redrew the parameters of my life and worked within that. I have never been happier in my life.’


Melanie was just 20 when diagnosed with mouth cancer in December 2005. She had an operation to remove the tumour and a bone graft was taken from her hip to replace some of the tissue removed.

As a single mother of a 15-month-old daughter she insisted on leaving hospital just 10 days after surgery due to childcare issues. ‘I just wanted to go home for her but in all honesty I knew I wasn’t well enough. I couldn’t speak and I couldn’t walk properly. That first night I was on my own literally with my baby and it was very difficult,’ she says.

Her daughter had a place at a nursery, open 8am to 6pm, which was invaluable when Melanie began a six-week course of radiotherapy. She drove every day from her home in Croydon to Guy’s and St Thomas’ in central London.

‘If it was rush hour and I got on the train I was conscious of not being able to get a seat. I still wasn’t good on my feet and my hip would play up,’ she explains. ‘I was also conscious of what I looked like. I had had major surgery to my face, it wasn’t as though I could hide it and people stared.’

Every time the radiotherapy nurses asked how she was feeling, Melanie said everything was fine - but it wasn’t.
‘During the last few days of radiotherapy I got really ill,’ she recalls. ‘I couldn’t get myself to the hospital because I was in so much pain. I had severe ear ache and you are not supposed to drive with an ear ache - I had to ask for help.’

The hospital contacted adult social services but the help given was limited. ‘Social services would only help me, they wouldn’t help my daughter,’ Melanie says.

‘A carer was organised and she would come round and do my ironing and cleaning. Really what I needed was someone to bear the burden of picking up my daughter so I didn’t need to worry about it.’

Melanie had reconstructive surgery to her face in June 2006 and started university that September, but is worried about finding a job when she graduates this summer.

‘My confidence has gone now. It is on my mind and I don’t think it should be as you need to be quite positive. I have survived and I am not completely un-understandable,’ she says. ‘Everyone likes to think everything is politically correct but there is prejudice.’

Melanie does not think she has recovered emotionally from the changes to her looks and voice. ‘I think I suffer with relationships and building friendships,’ she says, adding that relationships suffer because she is afraid to have any more children.

Hilary runs an IT department and was diagnosed with breast cancer in 2006. She had a breast mastectomy, reconstructive surgery and radiotherapy.

As a civil servant her employer had set policies on how she should be treated at work.

‘Interestingly, I wasn’t treated as well as some would have been because my boss had her breast cancer before me,’ Hilary explains.

‘You might expect that might mean she would actually be better with me, but she had gone into secondaries at the time I was going through primary. Either she didn’t want me too close to her experience or my experience was too close to hers - or possibly both.

‘I think it was a difficulty for her line manager to realise whether she was actually capable of dealing with the situation - probably they should have separated us because it must have been very hard for her.’

‘If you do something when you don’t have support, you don’t know what damage you are possibly doing’

As a single mother of two sons aged 17 and 19, she found it difficult to cope. Even though breast is a common form of cancer, Hilary found it very hard to access local support services. The nearest had closed down, the next nearest closed while she was ill and all the others seemed to take place during the day when she was at work.

One she did telephone was focused on the emotional side of things rather than the practical side that she actually needed.
‘I tried to contact the PALS people to get some help and it was a couple of weeks before they got back to me,
by which time I was pretty much on the mend and really didn’t need it,’ she recalls.

During radiotherapy Hilary got very bad chest pains and does not know whether this was owing to the implant
or because she was doing too much.

‘If you are tempted to do something when you don’t have support, you don’t know what the knock-on impact is - you don’t know what damage you are possibly doing yourself in the longer term,’ she warns.

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