Your child's feelings when they have cancer

This information was written by the Children’s Cancer and Leukaemia Group (CCLG).

When a child is diagnosed with cancer, it obviously has a big effect on them. They may be very frightened as well as feeling unwell and having side effects of treatment to cope with.

Being away from home, family and friends can also be difficult for a child to cope with. Understandably, this can have an effect on their behaviour. They may become very clingy, argumentative or difficult. Maintaining normal discipline during this time is reassuring for your child and can help them feel more secure.

Treatment may cause changes in their appearance, such as weight loss or gain, or hair loss. These changes can affect their confidence, especially for older children and teenagers.

Talking to your child

One of the hardest parts of caring for a child with cancer is knowing what to say and how much information to give them.

Answering questions honestly is best. Some children may not ask questions, but this doesn’t mean they don’t want to know what’s happening. They may be frightened and uncertain of many things. Some children may even wonder if they have done something wrong and that’s why they have cancer.

You can ask your doctors or nurses for guidance on how to talk to your child. There is also information available from CCLG, CLIC Sargent and Macmillan Cancer Support that can help you explain the illness and treatment.

Younger children may be frightened about being separated from their parents. It’s important to reassure them that any separation is only temporary. Older children may be more frightened of pain. It can help to explain that there are good painkillers available to help control any pain they have. Doctors and nurses will be happy to explain more about this and can help you reassure your child.

School

Children with cancer often have gaps in their education. This can be due to going into hospital, the side effects of treatment, or generally not feeling well enough to fully take part in daily school life. Most children’s cancer hospitals have education departments that can support your child while they’re in hospital. The teaching staff at the hospital will contact your child’s teachers to make sure they can continue their schooling whenever they feel well enough. It’s even possible for children to take exams in hospital if necessary.

As your child’s health improves and if treatment allows, going back to school may be a relief or a challenge. For many children, school is a refuge from the world of hospitals and procedures - a place for fun, friends and learning. Going back to school can be a sign that life is returning to normal.

However, some children, especially teenagers, may dread going back to school. This may be because of temporary or permanent changes in their appearance. Or they may worry that they’ll have missed a lot of work, or that being away will have affected their relationships with their friends.

Bullying may be an issue for some children at school, especially more vulnerable children. You can get advice and support from the school and other organisations if you think your child is being bullied.

If treatment has affected your child’s ability to learn, this can be a major frustration for them and may affect their confidence and self-esteem. The school can give extra help for children with learning difficulties. Talk to the teachers at school if you think your child may have problems.

Keeping teachers informed

It’s important to let the school know how your child is doing. As soon as your child is diagnosed, contact the head teacher to tell them what's happening. It can help to let the school know about the plans for treatment. The school teachers can then work with the hospital education department to make sure they cover the same work as the rest of the class.

It can help for the teachers at the hospital to let the school know if your child is emotionally or physically fragile. The school teachers can then take this into account.

At any stage of treatment, your child should be involved in letting the teacher know what information they would like to be shared with their classmates.

Risk of infection at school

For most children on cancer treatment returning to school is recommended, even when their immune system is low. It is important that they carry on with as normal a routine as possible. Most infections that children on cancer treatment pick up are not from other people or children. Chickenpox, measles or shingles can be dangerous to children who have a low immunity due to cancer treatment.

The school can develop a system to let other parents know that they should notify their child’s teacher if their child develops chickenpox, measles or shingles, so that appropriate action can be taken.

If your child has been exposed to chickenpox and has not had it before, contact the hospital straight away. It may be necessary to give your child some medicine to prevent chicken pox developing.

It can be difficult to get the balance right between letting your child mix with their friends and worrying that they might pick up an infection. You can discuss this with both the hospital staff and the teachers at school to make sure you’re happy with what your child does. Keeping up with schoolwork

It’s important for your child to try to keep up with schoolwork whenever they can. Learning can continue outside school. By speaking regularly to the teacher, you’ll know which subjects are being covered. Often, the teacher will send assignments and aterials home with siblings or arrangements can be made to collect them.

Your child should have an individual education plan in place. This plan can be shared between your child’s school and hospital school to ensure there is consistency in what is being taught.

To help your child keep up in school, you may need to ask for a special education statement. This qualifies your child for extra help.

Helpful tips

  • You could ask your child’s specialist cancer nurse or social worker to talk to the class about what is happening to your child and how they will look and feel when they come back to school. This could include a question-and-answer session to clear up misunderstandings and reassure the children in the class. Children having cancer treatment should be involved in deciding what information should be given to their classmates.
  • You could also send pictures of your child having treatment to the school. Some families have photo albums that can be shared with the classmates.
  • Encourage classmates to keep in touch by sending cards, phoning, texting and emailing. Social networking websites can be a good way for older children to keep in touch with classmates.

Very young children

Many children diagnosed with cancer are very young and have not yet started school. As a parent, you may have to choose between having your child at nursery throughout treatment or keeping your child at home.

Keeping your child at home may mean they have less chance for social growth and development, but if they stay at nursery there’s a risk of infection. There is no right or wrong decision – it’s a personal choice for you to make. You may want to think about whether:

  • your child is already settled at nursery or pre-school
  • your child’s social needs can be met by siblings and/or other children outside of the nursery
  • your child is well enough to attend nursery or pre-school
  • your child has already had chickenpox.

It may be useful for you to talk to your specialist nurse or social worker about nursery attendance and the support they can offer to help with this.

Children's cancer information from CCLG

This information about children’s cancer was written by the Children’s Cancer and Leukaemia Group (CCLG). It has been reviewed and edited by their publications committee, which includes medical experts from all fields of children’s cancer and care.

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