Talking to your child if you have lymphoma

Should I talk to my child about my lymphoma?

Many people feel unsure whether to tell a child about their lymphoma diagnosis. You might worry that you’ll scare or upset them. It’s only natural to want to protect the people you love. Although these conversations can be difficult, children often cope better if they have an understanding of what is happening. 

We ended up telling our daughter about my lymphoma diagnosis in a far less planned way than we’d hoped. My husband was picking Tilly up from school as I was in hospital, and some of the mums in the playground asked how I was doing. Having told them about the diagnosis, we both realised we had to tell our daughter now in case she heard about it from someone else.

Katherine, diagnosed with anaplastic T-cell lymphoma 

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How can I talk to my child about my lymphoma?

We give some tips below that you might consider when talking to your child about lymphoma.

If you are not the parent or primary carer of the child, think about who will first tell the child about your diagnosis. For example, if you are a grandparent but you are not the primary carer of the child, it might be that the conversation involves you and one or both of their parents or primary carers.  Everyone’s situation is different, so think about what feels right for you and the child.

We also have lots of information about lymphoma in our books and information, as well as some short video animations you could show your child to help explain lymphoma and its treatment. Our Helpline Team are here to support you too.

Where and when should I start the conversation with my child?

• Give yourself time to prepare yourself mentally before starting the conversation. Talk to them when you’re feeling calm.
• Try not to leave it too long after your diagnosis, in case your child hears the news from someone else before you’ve spoken to them about it.
• Find somewhere comfortable where you can be together without interruption. This might be out on a walk or sitting down at home – wherever feels best.
• Think about when you’ll start the conversation. For example, earlier in the day rather than close to bedtime.
• While it can be helpful to think about what you might say, try not to over-think it, as this can create pressure to ‘get it right’.
• If you have more than one child, telling them the initial diagnosis and key updates together can help minimise the risk of feeling left out, or that some important information is being hidden from them. However, trust that you know your children and what suits your family best.

Rather than a formal talk, I sat on the bathroom floor with my daughter and explained about my lymphoma. 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. 

Katherine, diagnosed with anaplastic T-cell lymphoma

How can I explain lymphoma to my child?

There are some general tips below. We also give an idea of the sorts of things you could say to explain lymphoma.

• Make sure you know a bit about your lymphoma so that you can explain it to your child. Your medical team can give you information to help you understand your diagnosis. You can also talk to our Helpline Team if you’d like to talk it through.
• Think about whether you want to talk to your child alone, or if you’d like someone else there – such as a partner, family member or friend. Some hospitals have a suitable member of staff who can help you tell your child, like a nurse or social worker. Take whatever approach feels right for you and your family. 
• Remember it’s OK to say that you don’t know the answer to something but that you can try to find out.
• Use language suited to your child’s age and developmental level to help them understand the situation. Resources such as our storybook, Luca has lymphoma, might provide a useful starting point. You can also find animations and Easy Reads (that use large print and pictures) in the accessible information area of our website.
• Be honest so that you build trust and security. Honesty can also encourage your child to express their worries instead of feeling they mustn’t, in case they upset you. Trying to cope with difficult feelings on their own can heighten a child’s fear as they begin to imagine various scenarios and the worst possible outcome.
• Reassure your child that you have a team of doctors and other health professionals who are looking after you and doing all they can to help you get better. 
• Think about the possibility of your child asking questions that might be very difficult for you to answer. For example, whether treatment will definitely work and whether it is certain that you will get better.
• Talk about how you feel. For example, let your child know if you are sad, worried, tired or in pain. This sets an example for your child to be able to express their own feelings. Reassure them that no matter how you’re feeling, it doesn’t affect how much you love them.

Things you could say to help explain lymphoma

Lymphoma can be difficult to understand, particularly for a child. You could explain that:

• Everyone’s body is made up of millions of tiny cells.
• Sometimes, if something goes wrong, the cells can grow out of control and form a lump.
• The lump of cells is bad and can make you unwell.
• The name of the illness is ‘lymphoma’.
• You can also explain that you might need medicine (treatment) to control or get rid of the cells. This medicine might make you feel tired or sick because it is so strong.

If you have treatment, you could say:

• The doctors are giving me treatment to get rid of a bad lump of cells.
• The treatment is strong to help get rid of the lump of cells that have gone wrong, but it might make me feel unwell or tired at times.

If you've been told that you won't get better

If you've been told that you won't get better, think about how you might talk to your child about this. Our Helpline Team are here to support you if you'd like to talk through possible approaches. Macmillan Cancer Support has information to help support your child, including about talking to children when someone close to them is dying. Pip's Kit also has resources to support families with children aged 5 to 10, with tips in talking to a child if you will not get better.

How much information should I give my child?

• Be guided by how much or how little your child wants to know, and be aware that this might change over time.
• Think about what your child already knows, For example, they might not have ever heard of lymphoma. Perhaps they know the word cancer but don’t really understand what it means. Although it can be a daunting word, it is often a good idea to be honest and to allow opportunities to talk about it.
• Break information down into chunks. Having lots of information at once can be overwhelming.
• Let your child know that it’s OK to come back and ask questions and that they can talk to you when they want to. There might be times when you don’t feel able to answer, for example, because you’re tired. Try to acknowledge their question and let them know that you will set aside time to talk about it with them.

It’s important that children have an awareness of what is happening. Try not to put pressure on yourself by making the conversation a big deal. You don’t need to give lots of information during your first discussion with your child. You can continue these discussions and add other bits of information as time goes on. 

Hannah Haworth, Social Worker

Resources you could use:

We list some of resources below that you might find helpful in explaining lymphoma and its treatment to your child.

You might also be interested in our useful organisations webpage, which has a section on resources to help support you and your children if you have cancer.

Cancer Research UK also has a list of resources to help you and your children when you have cancer.

Although their information is about when a child has cancer, Children’s Cancer and Leukaemia Group (CCLG) have a resource that gives tips on supporting children of different ages with their emotions: Supporting brothers and sisters.

Our video animations are designed to watch with your child. The videos explain what lymphoma is, treatments that might be offered, and how lymphoma might affect day-to-day life.

There are some key differences between high-grade (fast-growing) and low-grade (slow-growing) lymphomas, so it’s important to watch the right video for your lymphoma type.

This video is about Hodgkin lymphoma and high-grade non-Hodgkin lymphoma.

This video is about low-grade non-Hodgkin lymphoma.

Personal experiences of others

We have personal stories on our website from people affected by lymphoma, including:

• Alex’s story, where he talks about the challenges of a young family and his lymphoma diagnosis.
• Jean’s story, which covers dealing with her lymphoma treatment and the impact on her two sons.
• Katherine’s story, where she talks about how her stem cell transplant didn’t stop her from being a mum.
• Natasha's video, where she shares her family’s experience of her husband's lymphoma and their two sons.
• Nicola’s story, and adapting to a lymphoma diagnosis with a young child and a baby.
• Mez’s podcast: No one like me is talking about this, where he shares his experience of diagnosis and treatment, as well as thoughts on family life.

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Your emotional wellbeing

Lymphoma can have a significant emotional impact on you and your family, as well as on day-to-day living. 

Taking care of your emotional wellbeing can have a positive effect on your child’s emotional wellbeing.

You might experience some difficult feelings. For example, some people feel guilty for being unwell or unable to do all that they usually do with their children. 

We’re here to support you and speak to a member of your medical team to find out about any support available locally to you – a clinical nurse specialist is often a good first point of contact. 

Support and Information centres in your Treatment centre can offer local resources. You might also be interested in finding out about talking therapies, such as counselling. 

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Your child’s wellbeing

To help your child adjust emotionally, encourage them to keep honest and open communication. This includes preparing them for changes and keeping a sense of normality and routine. You could also think about any support available to them outside of the family.

Some children might try to hide their feelings to protect you, or behave in ways that seem challenging. Heightened stress and anxiety can also cause physical symptoms or trigger existing conditions, for example headaches, stomach aches, other pains or eczema.

A 2024 review of 57 studies looked at the impact of a parent’s cancer diagnosis. Although each individual child and family is unique and responds in their own way, the researchers found some general trends. Younger children (up to age 6) were more likely to experience anguish and sleep problems. Those aged 7 to 12, a sense of guilt, and 12 to 18 year olds emotional difficulties, including anxiety and low mood. The researchers state that communication seems to be an important protective factor in children and teens’ ability to adapt to their parents’ diagnosis. 

Some children might start to take on parts of home life. For example, more household chores or looking after younger siblings. They might take care of some of your physical needs too. This can affect their social, physical and emotional wellbeing, and it’s important that they are offered appropriate support. The NHS has information about help for young carers. Carers Trust can also help young people find local support.

Some of the ways you can help to support your child’s wellbeing include preparing them for changes and keeping a sense of normality and routine. You might also consider support outside of the family.

It doesn’t matter how old the children are, the aim from the initial conversation is to provide reassurance and a safe and relaxed space for questions. Reassure children that you will keep them informed of any changes and that they are still just as loved. 

Hannah Haworth, Social Worker

Prepare your child for changes

Preparing children for changes can help them to cope with them. 

• Let your child know in advance if you have a planned stay in hospital. You could tell them a bit about what it is like in hospital, to help demystify it. Tell your child how long you expect to be in hospital, whether they will be able to talk to you and who will look after them. 
• Talk to your child about side effects such as hair loss, sickness and fatigue you might have.
• Reassure your child that, as far as possible, their routines will stay the same.
• Talk to your child about possible changes to their day-to-day life. Where possible, include them in decisions that affect them.

When I was away from home having the stem cell transplant, my daughter didn’t want to Skype or Facetime as she found it too upsetting. I sent her little postcards and text messages instead.

Katherine, diagnosed with anaplastic T-cell lymphoma

Keep a sense of normality and routine

Try to explain reasons for any changes to your child’s day-to-day life. For example, explain to them that you have a hospital appointment or that you feel exhausted and would like to save your energy to read to them before bed.

Where possible, keeping a routine helps to give a sense of familiarity, control and emotional safety.

• Let your child do their usual activities. This can help give them something else to focus on. It might also allow them an outlet to express and cope with their feelings. You might also find it helpful in giving you some time to yourself, knowing that your child is safe and having fun.
• Keep ground rules. This can be difficult if you don’t have much energy or feel guilty for doing so. However, it can be more unsettling to a child if day-to-day rules are not upheld as ground rules are an important part of consistency and routine. 

Who else should I tell about my lymphoma?

It’s your decision who you tell about your lymphoma and how much information to give. However, it can be helpful to tell your child’s school and any activities or clubs they’re a part of. Let your child know in advance that you plan to do this. For example, you could say something like: ‘I’m going to let your teachers know about my lymphoma diagnosis so that you don’t have to. They will be there to support and help you if you need them’. Having this information gives staff members an opportunity to support your child – for example, if a teacher notices changes in your child’s behaviour or concentration. 

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Support for your child outside the family

Sometimes, it can be helpful to have someone outside of the immediate family to talk to. Schools and colleges often have their own wellbeing services, including counselling – a type of talking therapy that can help with processing difficult feelings. The NHS website has more information about talking therapies and how to access them. Macmillan Cancer Support also have cancer support specialists who can help you find counsellors in your area, to support you as well as your child

Some people feel uncomfortable at the thought of their child talking about their difficulties with someone else. However, for some children, it’s an important part of being able to say what is on their mind, making sense of, and coping with the situation.

Creativity can also be a helpful outlet for expressing feelings. Such activities can feel less daunting and more emotionally safe than talking directly about feelings. For example, drama, dance, art, painting and music, individually or as a group activity. There are also trained professionals who offer support in working creatively to express and process thoughts and feelings.

You’ll find a list of organisations to help support emotional wellbeing on our useful organisations webpage.

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