Tuesday, May 1, 2012

Young People and Cancer

by Victor Bernhartz

Cancer is a group of some 200 diseases all involving unregulated cell growth. The existence of has been known for over four millennia, although the more sophisticate understanding of cancer enters in the second half of the 19th century. Roughly 90 per cent of cancer is caused by environmental factors, i.e. are not caused by inherently genetic faults. However, in the individual case, it is very difficult to establish the exact cause of a specific disease and it’s history in the body, before discovery and treatment.

Being a young adult patient and survivor
Cancer is indeed lethal. Discussing cancer always means, on one level or the other, a discussion about death. While death is a topic not uncommonly brooded on in adolescence, living with cancer as young person involves a very direct meeting with said brooding. 

There is no way to describe how young people with cancer generally think and react to the disease. Consider being the centre of attention in class or in a circle of friends, while no one can be expected to have a deeper understanding of the disease, combined with their fear of a condition you have learned to fear. How one deals with that individually varies greatly. The common denominator being that life indeed changes radically.

Some friends will disappear, from fear or from not knowing what to do – or from the fact that cancer is a full-time position. In between tiring treatment sessions at clinics and dealing with issues related to the illness, there isn’t much time for social life. Young friends cannot be expected to understand, but nonetheless, remaining a close friend to a young person living with cancer, will require a lot. Being close to a cancer patient means placing many (if not most) of your personal priorities on hold. Adapting to that requires determination and patience as well as a lot of love.

With regards to family and the closer circle of relatives, a young person’s cancer will undoubtedly pull everyone in, regardless of reaction. Making sure the young person is supported emotionally and logistically will occupy most of the family’s time. Sometimes, the practicalities will make you forget that all arrangements are due to a potentially lethal condition – an absurd situation is normalized and integrated in the regular day, affecting work, studies and social patterns.

Many young survivors will carry traces from successful cancer management for the rest of their lives. Two out of three childhood cancer survivors experience at least one complication in therapy, and one in three develop complications that might require treatment later in life. Transition into adulthood is also altered. Time away from regular life means time away from education and work experience, as well as opportunities to socially grow, with friends and lovers. Fertility can be affected by therapy, and the future risk of developing another cancer is higher. Hence, coming out of cancer management as a survivor does not mean that things will go back to “normal”. Young patients are at greater risk of future complications compared to adult patients, simply because young people have a longer stretch of life ahead of them, in which things could go wrong.

The 1970s and talk therapy
Cancer was, up until the appearance of AIDS, the paradigmatic disease of the 20th century. Despite continuous scientific progress, it was a condition (in much similarity to AIDS) associated with stigma. Furthermore, it was associated with personal characteristics and attitudes, specifically in the 1970’s, when the alternative treatment “talk therapy” emerged.

Personal attitudes towards life and patient’s psychology were basis in such treatment. You could have a “cancer personality”, meaning you were depressed or self-loathing. To live through the disease, one was supposed to “fight cancer”. The road to be free of cancer was to be happy. So-called “positive thinking”, still a popular element in 21st century discourses on cancer (with breast cancer as an outstanding example), emerges here. More on this can be found in Susan Sontag’s Illness as Metaphor (1978).

More conventional medical cancer management, such as surgery and chemotherapy, was available in the 1970s. In the US, president Richard Nixon declared a “war on cancer” in 1971. Some argue that such radical wording paves the way for destructive management methods, as well as placing responsibility for a recovery with the individual patient.

For the purpose of the larp, talk therapy, positive thinking and the war on cancer should provide entry points for players. Were they involved in talk therapy or not? How do they relate to the criticism of talk therapy and to the president’s war? And following that, does the above affect their reactions to AIDS and people living with the disease?

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