The long road to recovery
Nearly 80,000 people in the UK today were diagnosed with cancer when they were under the age of 45. Younger people with cancer face particular pressures, as the disease coincides with the peak years for raising a family and forging a career. Macmillan Cancer Support has developed a package of interventions to improve outcomes for people in this group.
But many people who have survived cancer find it hard to celebrate because they are living with the debilitating aftermath of the disease and its treatment.
And for nearly 80,000 people living in the UK who were diagnosed when under the age of 45, there can be extra pressures. This group is often in the throes of raising a family or forging a career.
Juliet Bouverie, director of services and influencing at Macmillan Cancer Support, explains: ‘The sad reality is that many people of this age may be struggling to hold down a job, support a family and deal with the emotional impact of cancer while also going through treatment.
‘Many could be doing so for years as they live with and struggle to manage the debilitating side effects of cancer treatment, such as fatigue, pain, problems with mobility or depression.’
A young woman who posted her story on the Macmillan Cancer Support community forum said: ‘I’m 34 and had a lumpectomy, chemo and radiotherapy three and a half years ago. I’m still taking tamoxifen and, like many, I still have moments where I struggle with the emotional side of post treatment. Every so often I feel overwhelmingly tired.
‘I’m a primary school teacher, back full time, and I must admit it feels so much harder than it was before... I would like to understand this tiredness better so that I can accept it as part of my cancer recovery, if I need to, and find ways to manage it in my everyday life.’
The charity Bowel Cancer UK this year surveyed more than 400 people who were diagnosed with the condition while under the age of 50. The survey results revealed the toll of ongoing health and wellbeing problems for many.
More than four in ten had continence problems, one in five was experiencing sexual dysfunction, and more than a third had psychosocial problems. Half of those who responded said they had no one their own age to talk to, while one in three said that information they were given was aimed at older people.
John Sweeney, a Macmillan cancer information nurse specialist working on the charity’s telephone helpline, says people struggle when their treatment finishes. ‘They say their friends and family are pleased, their doctors are pleased but they feel terrible.’
Often they have physical problems associated with the disease and many are depressed – and feeling guilty for being depressed.
Younger people also have worries about employment and holding down a job or claiming benefits. ‘Financial difficulties are a huge worry for people throughout and after their treatment,’ adds Mr Sweeney, who refers callers to specialist financial advisers at Macmillan Cancer Support.
None of this is new – the long-term impact of cancer and its treatment has been known about for many years. And yet, says Ms Bouverie, many people receive little or no support when treatment stops.
‘Sadly the NHS isn’t set up to support the individual, complex and long-term needs people may face when treatment finishes,’ she says.
‘People are usually left to cope alone, apart from the occasional follow-up appointments to check that the tumour hasn’t come back.’
Mr Sweeney says the nursing profession has responded by creating new specialist roles in areas such as lymphoedema; the difficulty, however, is getting a referral.
Macmillan Cancer Support is calling for a more holistic response. It has developed the Recovery Package as a model – a series of key interventions which, when delivered together, can greatly improve outcomes for people living with and beyond cancer.
Source: Macmillan Cancer Support and Public Health England’s National Cancer Intelligence Network (June 2015)
These interventions are: holistic needs assessment; treatment summary; cancer care review; and health and wellbeing clinics.
They form part of an overall package supporting self-management for people living with and beyond cancer.
Ms Bouverie says: ‘We want the government to commit to ensuring that every person with cancer receives an assessment of their emotional, physical, spiritual and social needs and a personalised recovery package of care based on their needs when treatment ends.’
For people of working age, this recovery package could include guidance on keeping active as part of a healthy lifestyle, information on how to manage the physical consequences of their treatment, and access to financial support and employment advice, she says.
‘Only in this way will the NHS be able to support a rapidly growing number of cancer survivors with the long-term impact of cancer and give them a decent quality of life in the years after their treatment ends’.
Today, the ramifications still run on. Fatigue is an ongoing problem that she manages with the support of a sympathetic employer. Recently she has developed food intolerances that, she has been told, could be caused by the chemotherapy.
‘I struggle with thoughts of recurrence,’ she says. ‘When I had my five-year all clear it was the best feeling in the world, but six months later I was so anxious that the doctors agreed to give me a check up.
‘I will have colonoscopies every couple of years from now on. Ugh.’
She has undergone emergency surgery after a band of scar tissue from her original operation became wrapped tightly around her small intestine.
‘I’ve been told it is likely to happen again,’ she says.
Ms Crummay says her health care has been brilliant, but there are gaps when it comes to staying well. ‘A friend recently went on a fitness training course run by Macmillan and she asked me if I knew that six hours a week of exercise can reduce the recurrence of bowel cancer. I didn’t – and it is the sort of thing I would have found useful.’