Cancer in Young Adults: Through Parents’ Eyes
2. The need for normality
A number of issues were raised relating to the loss of normality and the quest to regain it. The importance of friends appears to be crucial, but at this time of life such contact may be lost as friends move away. Where this is the case the loss is acutely experienced. However, even where friends have been available, this has presented problems for young adults with cancer who may feel too ill to socialise or may be too embarrassed about their appearance to want to be seen.
The importance of belonging to a peer group is clear, and this is threatened by illness. Brannen Dodd, Oakley and Storey (1994) demonstrated the importance of establishing links outside the family at this age, and we have seen through these narratives that such links can be broken for a number of reasons. Attempts to be ‘normal’ can lead to an unwillingness to recognise or admit to being ill or to seek medical help and may also result in attempts to cover the reality of the situation.
While the need for ‘normality’ is always central at this life-stage, when coupled with life-threatening illness it may be that the young adults seek ‘super-normality’. This concept, it could be argued, characterises the intense need for normality during what is a very ‘abnormal’ event.
It is also clear that interruptions to the life trajectory at this stage can be exceedingly disruptive. The importance of life calendars is emphasised by Costain Schou and Hewison (1999) who note that a cancer diagnosis causes huge disruptions to both life calendars and day-to-day personal calendars. Examples of the interruption of those calendars suggest that the disruption caused by a cancer diagnosis in early adulthood arguably has an impact even more far reaching than at any other age as the transitional stage can be damaged for all time. The transition may, indeed, never be made – into the labour market, to university, or through to graduation. There are accounts of a number of young people whose plans have been thwarted and the resulting distress as they seek to manage not only the illness, prognosis and treatment, but also the knowledge that they may never complete the transition to the next stage of adulthood.
The implications for professionals relate in part to their need to know that life-stage issues will have to be dealt with and that the loss of ‘normality’ may hit harder amongst this age group. But importantly, professionals involved in the care and management of the young adult need to be aware of the crucial nature of the life calendar. Some accounts in the narratives that suggest that the disruption to the transitional nature of this life-stage has been exacerbated by educational establishments being rigid in their implementation of regulations. While it seems that greater flexibility would be helpful under such circumstances, it must be acknowledged that many teachers/lecturers will never encounter the scenario described due to its (thankfully) infrequent occurrence. Yet it is this very unfamiliarity that makes the management of the situation challenging to an institution which is unlikely to have the mechanisms in place to accommodate the needs of a young person with cancer.
If young people with cancer, whose illnesses might be protracted, are to be able to fit back into the educational system at points when their treatment trajectories allow, an understanding by professionals of the difficulties imposed by a rigid structure may result in some of the difficulties documented in this chapter being eased. The commitment in the NHS Cancer Plan (2000) to improve cancer services in the community could extend not only to the medical services, but also to a more broadly defined support structure encompassing a knowledge of such matters, and an authority to intervene, where appropriate, on behalf of the family.
Although it was not specified in the narratives, the therapeutic environment in which young adults are treated may help them to retain a sense of ‘normality’ if carefully designed for their age group. Thornes (2001) cites The Teenage Cancer Trust study that establishes that young people with life-threatening or very serious illness are no different than their healthy peers and need privacy and personal space, and appropriate and private facilities for showering, drying hair and putting on make-up. In addition they need opportunities for peer interaction, especially during the evening and at weekends. Thus a recreation area with appropriate décor and entertainment facilities, where they can make a noise without disturbing younger or older patients, can all assist in ‘normalising’ the environment and minimising the loss of normality.