Talking to children about lymphoma

Telling your child you have lymphoma and talking about your illness can be very difficult. This page gives some guidance on what to tell your children and where to find other resources.

On this page

Should I tell my child?

When should I talk to my child?

What should I say?

Keep communication open

Older children and teenagers

If someone close to you has lymphoma: animations for children 

Resources

This page is intended for parents or carers who have been diagnosed with lymphoma. Parents and carers may also find this page useful when explaining that another relative, such as a grandparent, has lymphoma.

Watch Claire Tune, Lead Counsellor at Phyllis Tuckwell Hospice Care, explain how to talk to children about a lymphoma diagnosis in their family


Should I tell my child about my lymphoma?

It is natural to want to protect your child from things that could upset them. The idea of telling your child you have lymphoma can be overwhelming. 

Even very young children pick up on the atmosphere at home and notice when something is wrong. Not knowing what’s wrong can be very worrying for them. They could overhear things that make them worry more. They might blame themselves for your changes in mood. 

You can help your child cope with your diagnosis and any changes at home by being honest with them. Explain what is happening in a way they can understand.

It is easier for children to cope if they trust you and know they can talk to you about their feelings.

 
One of the mums in the playground asked how I was doing. Having told them about the diagnosis, we realised we had to tell our daughter now, in case she heard about it from someone else.
Katherine, diagnosed with lymphoma when her daughter was 6

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When should I talk to my child?

Make sure you understand your lymphoma before you try to talk to your child about it. Your medical team can give you information and advice to help you understand your diagnosis. You can also find out more about lymphoma on our website or contact us if you need any information or advice. Try not to leave it too long to tell your child though, as they could hear it from someone else. 

  • Talk to your child when you are feeling calm. 
  • Find a comfortable place where you can sit together and you won’t be disturbed. 
  • If you have more than one child, it is best to talk to them together so they have the same information. 

It’s natural to get upset when talking to your child about your diagnosis. Let your child know it is OK to express your feelings to the people who are close to you.

You might want someone with you when you talk to your child: your partner, a family member or friend. Some hospitals may have a nurse or social worker who can help you tell your child if you want them to. You might prefer to tell them on your own.

There are resources you can use to help explain what is happening.

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What should I say?

Think about how you are going to start the conversation but don’t overthink it. Find out what your child knows already. It is very likely that your child has never heard of lymphoma. They might have heard of cancer but not know what it means. If they do have an understanding of it, the word ‘cancer’ can be frightening. Your child might think it means you are going to die. 

You know your child best. Be guided by how much or how little they want to know.

Caroline

 
I’d just turned 40 and had 2 young sons. Sadly there has been a lot of cancer in our family, so despite how young they were, I knew my children would have some understanding. I didn’t want them to overhear hushed conversations, but wanted to be open with them and let them ask me any questions they wanted. Generally they coped very well and just got on with life.
Caroline, whose sons were 8 and 5 when she was diagnosed with lymphoma

Be honest and keep it simple

Use language your youngest child can understand. Here are some ideas:

  • Everyone’s body is made up of tiny cells. Sometimes, the cells go wrong. If the cells grow out of control, they might form a lump.
  • I have a bad lump or bad cells growing in my body.
  • The doctors are giving me treatment to get rid of the bad lump or cells so they don’t get worse. 
  • The treatment is strong to help it get rid of the bad lump or cells, but it might make me feel ill.
  • I might need some help while I am getting better. 

You won’t be able to make your child any promises, but you can reassure them that everyone is doing what they can to make you better.

Don’t be afraid to use the proper words

It can be very confusing and worrying for children to hear you saying words they don’t know to other people. They might just need to know that ‘lymphoma’ is the name of your illness and ‘chemotherapy’ is the strong medicine you are having. 

Katherine and her daughter playing Scrabble in the hospital

 
I told her what we knew, that the treatment would make me very poorly, that the strong medicine would make my hair fall out, but that the kind of cancer I had was very treatable and the doctors were working hard to make me better. We found a couple of books really helpful, Nowhere Hair and the Secret C, and used these as a way to let her talk openly about what was happening.
Katherine, who was diagnosed with lymphoma when her daughter was 6

Be open

It’s OK for your child to know you are sad or worried. Knowing this might help them feel able to express their own feelings. 

Tell them if you are tired or in pain. It could help them to understand any changes in their lives – for example, if you can’t take them to school. 

Your diagnosis and treatment can affect your mood and feelings. Tell your child it doesn’t affect how much you love them. Your mood doesn’t mean they have done something wrong.

Prepare your children for changes

Children might find it easier to deal with changes if they are prepared for them. Talk to them about:

  • side effects such as hair loss, sickness and weight gain or weight loss
  • changes in routine: who will be collecting them from school or taking them to activities if you are not able to do it.

Your child’s teacher and staff at clubs might pick up changes in your child’s behaviour in school or at other activities. Let your child’s school and clubs know about the situation so that they can offer support. You can tell them how much or how little your child knows about your condition. 

Both you and your child are likely to find the separation hard if you need to stay in hospital. Tell them who will be looking after them and what is happening so they are prepared. Talk about what it is like in hospital and what they might see if they visit. Don’t force them to do anything they don’t want to do. 

They might ask why

Reassure your child that there is nothing they have done that has caused your lymphoma. You didn’t do anything wrong either. No-one knows why it happened to you. Bodies are very complicated and sometimes things go wrong.

Tell them that they can’t catch lymphoma from you. You can still be close to them.

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Keep communication open

Telling your child about your lymphoma is a big step. It is just as important to keep communication open after you have told them. 

Don’t expect to tell your child everything in one go. Be guided by your child’s reactions and questions. They might need time to process their feelings before they come back to talk to you about it some more. They might want to ask lots of questions. They might just go and play as if nothing is wrong. Let them know you are there to answer their questions. Talk about your illness to give them openings to talk to you if they need to. 

Let your child know it is OK to talk about cancer. They do not have to cope with difficult feelings on their own.

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Older children and teenagers

Older children and teenagers can understand more about your illness and might ask more questions than younger children. They might bottle up their feelings to protect you, or behave in a challenging way at times. Encourage them to talk to you and ask questions. Be honest and open so they feel like they can trust you. Some children and teenagers find it helpful to have someone else to talk to, like a family member or friend. It is important to still give older children and teenagers guidance and structure in their lives so they learn how to cope with difficult situations.

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If someone close to you has lymphoma: animations for children 

These videos are designed to be watched with your child if they have a loved one or family member with lymphoma. The videos explain what lymphoma is, what treatment involves and how the illness might impact upon the child's day-to-day life. The first video is about Hodgkin lymphoma and high-grade non-Hodgkin lymphoma, and the second video is about low-grade non-Hodgkin lymphoma. There are important differences between high-grade (fast-growing) and low-grade (slow-growing) lymphomas, so make sure you watch the right video. 

 

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Resources

There are several resources you can use to help you in your conversations with your children. 

  • Our Tom has lymphoma storybook is about a primary-aged boy diagnosed with lymphoma. Although the story is from Tom’s perspective, many parents have found it useful.
  • Macmillan Cancer Support have advice on talking to children about cancer including how to tell them about your diagnosis, treatment and its side effects. They also publish a booklet called Talking to children and teenagers when an adult has cancer, which you can download free of charge or order online. 
  • Cancer Research UK also have a webpage on this topic.
  • London Cancer and the Fruit Fly Collective have produced a video to support parents in talking to children about cancer. There is also a comic using the same illustrations and concepts.
  • Talking to children about lymphoma if your diagnosis is terminal is one the most difficult things you ever do. Macmillan Cancer Support and Winston’s Wish have collaborated to produce a booklet called Preparing a child for loss. It gives practical advice to guide you in these conversations.
  • The Marie Curie website also has information on talking to children about your cancer. 

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Further reading

Related content

Katherine's story

Katherine was diagnosed with anaplastic large cell lymphoma when her daughter, Tilly, was 7. Read her story and other personal stories.

Macmillan Cancer Support

Macmillan have a range of resources about talking to children about cancer, including a toolkit for teachers to use in schools.