Coping when your world is torn apart

The following summary is from a talk given by Dr Mark Chesler at the SIOP meeting in Brisbane. Dr Chesler is Professor of Sociology at the University of Michigan and is the father of a child diagnosed with leukaemia in 1976. He is also a former president of ICCCPO -.the International Confederation of Childhood Cancer Parent Organisations - and was guest speaker at a Child Cancer Foundation's conference.

At the time of diagnosis previous normal family routines come to an abrupt end and, however much life gets back on track, it will never return to 'normal' again. It represents a period of shock, stress and challenge. Professor Chesler divides the stresses into five types.

Informational stress

This is a time of confusion, and a time when parents need to learn a lot of medical terms, jargon and hospital technology. It is a time of having to quickly get to know a range of hospital staff and the parts they play in your child's treatment and comfort. Ignorance about where things are in the hospital and how to find the way around will be a source of frustration. In the early days there will be a real lack of understanding about the nature of your child's illness and lack of clarity about how to explain the illness to others i.e. family and friends.

At this time of maximum stress, when parents might forget much of what they are told, they feel under real pressure to "get it right". Suddenly they are seen as the 'experts' who have to keep everybody else informed.

Practical stress

Suddenly what is going on in the hospital takes over. This can leave disorder and chaos at home. Meals become irregular, household chores are not done and the normal routines of family life seem to go out of the window, an inevitable result of suddenly spending a lot of time at a hospital and the emotional turmoil, which parents are going through. Financial pressures may surface: it may be necessary or preferable, for instance, for one parent to take a substantial amount of time off work.

At a time when nerves are already on edge, the time spent queuing to get into a car park or having to pay a trivial parking charge may seem like the final straw. Finally, parents have the enormous responsibility to monitor treatments, particularly when the child is out of hospital. Questions arise, such as "should we phone the hospital now, or will it wait until morning?" "Is this fatigue a result of lack of sleep or is the disease returning?" For parents the responsibility of monitoring care can feel overwhelming.

Interpersonal stress

At the same time parents are coping with their lack of information, juggling hospital visits and other practical matters, they also have to manage the needs of other family members (siblings, grandparents etc). "Why is the sick child getting all the attention?" is a fairly common cry from a sibling struggling to cope with what is happening.

Parents also have to deal with the needs and reactions of friends and neighbours: the friends who cope by avoiding, the friends who call to ask what they can do to help, the friends so worried they cannot talk about anything else. The friends who just come over and do something (such as cook a meal, mow the lawn, sit with the ill child, take a sibling out to a movie) can be the greatest help at times like this. There will be many new hurdles to overcome, such as learning how to behave in public as a parent of a child with cancer (making that first trip out in public with your child with a bald head, coping with the stares and trying to enable your child to cope too).

Emotional stress

There are many different ways that emotional stress will become evident, and different people will be affected in different ways: the initial feeling of shock; lack of sleep (both through worry, and through trying to sleep in hospital wards); the emotional roller coaster between hope and fear; and an overwhelming sense of powerlessness.

Physical reactions may include loss of appetite, losing weight, palpitations etc. At a time when a family needs to be pulling together, differing parental attitudes and shifts in role can cause major difficulties. Wives may struggle to cope with the ways their husbands react and vice versa.

Generally the mother assumes the main caring role - she will be the one usually staying at the hospital. The father usually continues to go to work, even if he doesn't have much energy or interest. The mother therefore becomes the main messenger from the hospital about their child's illness. If the message is unwelcome then the messenger herself may become unwelcome.

Arguments about who has the easier time are not uncommon. In the normal course of events men and women deal very differently with the same situation. One parent may need to cope by talking constantly about what is happening, while the other doesn't. One may worry openly while the other keeps their fears inside. This too can cause difficulties at a time when husband and wife need to be coping together.

Spiritual stress

Families need to try and understand the meaning of what has happened. The "why has this happened to me/us/my child?" question is one to which there is no answer. All of a sudden the certainty about life/future plans and expectations for all the family - are thrown into doubt. Life suddenly seems very unfair. Religion may help, or may be seriously challenged.

While these stresses may be worst at the time of diagnosis, they will not just go away. They may change but they will certainly continue over time. The way parents cope with the stresses will vary from family to family and there is no right answer. There are, however, a number of coping strategies that may help:

• Recognise and respond to the stresses, don't try and pretend this isn't happening
• Get as much information as you can and try to understand the medical process
• Try and restore some sense of normality for the family. Understand that life will never go back to what it was but begin, in small ways, to put life back together: mow the lawn, do the chores, take a holiday, help the sick child realise that homework still matters
• Manage your emotions - take life one day at a time. Remember that parents must care for themselves too, laugh at times and play at times - and don't feel guilty about it.
• Make space for intimacy - both between husband and wife, but also with siblings, in order that the family doesn't fall apart under the strain.
• Think about your child as a whole child - don't just become a parent of a child with cancer. Continue to function as a parent of a child in school, a child with a busy social life, and with all the normal adolescent problems, etc. Cancer is a crucial part of your child's life but it is not all of it.
• Adapt to your new role as carers/medical experts, but don't let it take over your life.
• Create a support network - get together with other parents - they are the only ones who can truly understand what you have been/are, or will be, going through.

Many of the survivors of childhood cancer feel that the experience is one which has enriched their lives and from which they have grown as a person. Parents too could take a lesson from the survivors - life will never be the same again but there may well be positive experiences to come from it.

Dr Mark Chesler