THE EXPERIENCE OF CANCER

The illness career of the person with cancer has been characterized as a 'living-dying' experience in which, faced with the intolerable incompatibility of life and death, the individual and his or her family attempt to maintain control and 'normalize' everyday activity. Unfortunately, in their everyday struggles, families in North America appear to face social isolation from existing community services and networks that might assist them. Perhaps because the illness is so heavily medicalized and stigmatized, most persons with cancer and their families do not participate in them. A minority benefit from self-help organizations such as Cancer Society groups and survivor coalitions. The palliative care and hospice/home care movements provide an alternative to dying in the acute-care hospital, again, for a minority. Half of those with cancer survive more than 5 years; for these persons, the ordeal has just begun. Survivors must cope with physical disabilities due to surgery and the side effects of other treatments, the psychological traumas of fear of recurrence and social stigma, and the disappointment of a considerably reduced range of future possibilities for career and development. The fact that their relationships with others are negatively affected is well documented, particularly with intimate relationships. In a sense, a person never really 'gets over' cancer: it is a sword of Damocles that continues to hang over the individual and his or her family for the rest of the person's life. The challenge facing North American communities, now that fear and loathing of the disease is being scrutinized, is to empower persons with cancer and their families to address their own unmet needs and to lobby within their own communities to ensure that these needs are met.