It’s never easy telling any close friend or family member that you have cancer – but children present some special challenges. In addition to the loving concern they have for you, as immature beings they depend on you to help them deal with life and growing up. As parents we never want to hurt our children but rather to protect them. We ourselves feel pain when we’re not able to shield them from suffering – and this pain can sometimes make it difficult to discern the many ways in which we can ease their burden.
Sometimes parents genuinely believe that it’s best not to say anything to the children, especially if there is an expectation of successful treatment with minimal disruption to family life. How much and how widely to share is something each patient and family has to work out, and there’s no “correct” procedure. However, bear in mind that even if there’s every reason to be positive, treatment plans don’t always go smoothly and healing sometimes takes longer than first predicted. In the meantime children of all ages can be acutely sensitive at an emotional level. It is likely that they will realise that something is going on and will feel insecure. Yet children, even the very young, do have the capacity to cope and to play their part in the family’s response if we would give them a chance. Not telling can also represent a burden to parents, who may find themselves having to pretend that everything’s fine, when it’s really not.
Although you may have to tell children and other family members if you’re going to have an urgent operation, a detailed conversation about cancer can wait until you feel ready. This will be when you yourself have been able to absorb relevant information about the type of cancer involved, the treatment options, and the likely course of the illness (as far as doctors are able to describe this). Like anyone else, children prefer to have some sense of the whole picture rather than collecting information in scraps and shreds. Being knowledgeable about your cancer and its treatment makes you feel and sound more confident, which is important to your child – your confidence will reassure, helping them to take in what you’re saying.
Whenever we have to tell another person something we know they’ll find difficult to hear, we prepare the ground carefully. This means finding the best time and place, choosing our words wisely and allowing the other person time to think, as well as the opportunity to express feelings and to ask questions. Most children will prefer to be alone with the parent as the presence of siblings may distract, especially if there’s a big age gap between the children.
It’s important to be as factual as you can, at the child’s level of understanding. Many children have heard the term “cancer” and might even know people who have had cancer, but you cannot assume that they know what it is. So it’s wise to start the story from scratch: the body grows and stays healthy because cells are able to make more cells the same as themselves, but for reasons we don’t always understand, some start working too fast. They make way too many cells that the body doesn’t need. These extra cells collect to form a lump or tumour. Some tumours are harmless, but others are called “malignant”. Malignant cells can spread into places where they don’t belong and this makes it hard for the body to work. Using a special light, doctors can test the cells to see if they are malignant or not. If they are, the doctors have to catch all malignant cells and stop them growing by removing the tumour if they can and then using strong medicine or rays from a machine to destroy any malignant cells that were left behind.
You can then tell the child what the plan is for your treatment, and how long you think it might take. There’s nothing wrong with sharing hope, for example, “the doctors hope that I will be feeling better before Christmas/by the time it’s your birthday” – or otherwise reporting to the child what you’ve been told by your medical team in a way that is meaningful to that child. However, it may not be helpful or wise to give unfounded assurances like “Everything’s going to be OK”.
A simple explanation helps to clear up (or avoid) some common misunderstandings that children have about cancer – such as fears that cancer might be “catching” if they hug or kiss the affected person. All younger children and a few older ones filter life experiences through their imaginations. This is a great gift – but the child’s magical world can be frightening as well as comforting, and they often lack a firm grasp on real world relationships including “cause and effect”. Being self-centred and magical, as well as strongly identified with either or both parents, your children may readily believe they are to blame for Mom or Dad being ill, or responsible to “make it better”, and it’s useful to address this concern whether or not the child brings it up.
Just as you needed time to process the diagnosis of cancer, so too do your children – so don’t worry if they don’t have much to say at first. The most important thing is to let the child know that he or she can talk to Mom or Dad anytime and can ask about anything they want to know. Sometimes children prefer to turn to someone other than a parent to sort out his or her feelings; grandparents can be pillars of strength and “normality” at such a time. Signs that the child is not coping well may include being excessively quiet and withdrawn, problems with concentration and/or memory beyond the first few weeks, or hyperactivity (which has a driven, compulsive quality devoid of happy energy). Constant bad dreams and disturbed sleep are also indications for more formal therapy or counselling – which would often involve the whole family. Although it’s normal for a child to act out emotions such as anger or fear, parents often need guidance about how to handle this. At the other end of the spectrum, children who seem to be unaffected, carrying on “as normal” may be hiding their feelings which creates internal conflict and can lead to problems later. These children may need help to identify their feelings and give constructive expression to them.
Lisa Fayed (in the About.com Cancer guide, 2009) says the following questions often come up:
- Are you going to die?
- Will I get cancer too when I grow up?
- Will your hair fall out?
- Do I have to tell my friends?
- Who will take care of me if you can’t?
- Why did you get cancer?
- When will your cancer go away?
These are questions that you as the patient might also be uncertain about, and should be answered honestly. Communicate a sense of confidence without the unhelpful message that doubts and fears are not permitted, and try to address the child’s underlying fear: “I don’t know if I’m going to die. But I do know that I’ve got all the help I need to fight this and survive”. “The doctor doesn’t know why I have cancer, but it’s not because anybody did anything wrong”. “I’ll have to wear a scarf for a while when my hair falls out, but as soon as the treatment is finished it will grow back. Would you like to help me choose some scarves?” In this way, a foundation is created for reasonable hope – hope that is not false or forced, but is soundly based on the underlying strengths of family and community life which include love, faith, honest sharing, mutual helping and compassion.
If the family can work together to cope with cancer treatment, this is not only a great support to the affected parent but also for the children. In later years, your children will remember this time not only for the worry and sadness they felt, but as a time of resourcefulness and spiritual growth, in which they discovered that they too can be strong and can make a contribution when someone they love is hurting. It’s also a time when the petty things that often take up our energy as parents fade into the background, giving central focus to more important matters like love and relationship.