Young People Living with Cancer: Implications for Policy and Practice

5. Disruption of the Life Trajectory

Of course illness at any age is likely to result in the disruption of plans and life having to be put on hold while treatment and recovery take place, but young adulthood is, as we have seen, characterised by impatience and a need to move on to the next stage, to leave school, get a job, get qualifications, take exams, go to university, or even just to have the kind of social life that is so central to being young. Some of the examples of frustration presented here may appear relatively mundane – after all how important is a missed barbeque when contrasted with life threatening illness? Yet the distress at the loss of the ordinary everyday activities was clear in the interviews. When control has been lost in such a fundamental way, the additional small losses appear much greater and are deeply symbolic. At the same time as their expectations and plans – so long held – are put in jeopardy, the young person with cancer has to witness their peer group move on and away.

The issues raised in this chapter have direct relevance for policy and the provision of care. It is important that the ongoing educational needs of the young adults are addressed (Arbuckle et al 2005), thus limiting the danger of falling behind with coursework. In the specialist care setting personalised tuition can be made available regardless of academic level (Geehan 2003). It is provided through the support of a learning mentor who has the resources not only to allow the young adults to keep up with academic work but who can also facilitate applications to university or assist with career choices. Such support is clearly of vital importance both during the illness and after recovery when the young adult is reintegrating and rebuilding life.

It is clear that in the specialist care setting, there is an awareness of the danger of losing touch with friends who are as a result encouraged to maintain contact (Morgan and Hubber 2004). According to Woodgate (2006) if included during the illness, special friends can be a source of enormous comfort to adolescents and both support and distract them through very difficult times, but social isolation ‘may be driven by the sick teenager’ (West Midlands Paediatric Macmillan Team 2005) so active measures may need to be taken to retain social contact. If this can be achieved it will maximise the chance of reintegration that is a crucial part of the recovery process as social as well as physical recovery is central to the psychosocial wellbeing of the young adults. As Lewis (2005) says, maximising the chances of survival should be accompanied by efforts to minimise the psychological and social cost of that survival and we have seen evidence in this chapter that the expertise in the specialist environment can indeed minimise the psychosocial damage. Thus if professionals recognise the issues discussed in this chapter and can provide resources to meet the needs identified this may help to alleviate some of the distress and disruption to the lives of the young adults thereby maximising the possibility of compliance and recovery.

There is also evidence from the young people’s accounts that future plans can be affected by an ongoing anxiety that is related to a fear of relapse and as a result continued support may be needed for some time after treatment and recovery (Neville 2000). However, this age group may not be well served by the standard services on offer (Zebrack 2006) so it may be that the only continuing support is offered by the specialist ward that goes on welcoming their discharged patients long after their treatment is over.

Key Points

The interruption of the life trajectory results in:

• disrupted education – delayed university entrance and missed exams
• missed job interviews and disruption to careers plans
• cancelled travelling
• social isolation
• loss of ‘normality’

Peer relationships suffer because friends:

• move on
• move away
• cannot cope
• do not understand the constraints

Ongoing anxiety is felt:

• with any slight ailment
• before check ups
• over what the future holds
• fear of infection
• fear of relapse

The specialist care setting can:

• facilitate educational and career plans
• support contact with friends and encourage friends to visit
• act as a vital life line to ‘normality’