Communicating successfully is hard in normal situations, and harder still when there are all the serious things to address that come with a brain tumour diagnosis in your family. Here, we have an evolving resource to help you tackle some of the challenges that you may face when talking about issues relating to a brain tumour.

Children have overactive imaginations. If you don’t talk about this situation with your child, then they will provide their own answers, which will probably be wrong. They will know something isn’t right. Often, as adults, we are humbled by the strength, courage and dignity with which a child handles a situation. Use simple language, working on the premise that less is more. If your child is young, avoid words such as benign, malignant, therapies and cancer. It is important to let them know that they can talk about the illness (whether it is theirs or yours) at any time. The child needs to know that they will not be abandoned and that you will be there for them. Tell them that you, too, have moments when you are frightened, angry, lost, but that these moments pass, particularly when you tell someone how you feel. Be truthful but optimistic and sensitive.

Don’t be upset if your child chooses another person to be their confidant. Children have an innate need to protect those they love, and they may feel that it is less of a burden for you. Just let them know that you are happy to chat – whenever.

The bottom line is that, as a family, you have a shared history together. It may not seem like it initially; you will all feel that you are treading on eggshells and that the bonds you had have gone forever. They haven’t; they are just finding a new groove. You are in different places now, but the shake-up period will pass. As time goes on, the warp and weft will be rewoven, and you will emerge as a stronger unit. Routines are important, and one meal a day together is crucial – this could be breakfast. It may be that there needs to be a new division of labour, as parents are dividing time between hospital and home, and possibly work. There needs to be a shared understanding about what is needed, and family members must feel able to ask for help. Yes, there will be anger, but by raising the tolerance levels, this can pass.

Brothers and sisters may be coping with strong and conflicting feelings. They may feel guilty, feeling perhaps that they may be in some way responsible for their sibling’s illness. They may also feel jealous about the attention that is being given. Be sensitive but firm. More than ever, they need love and need to know what the boundaries are.

Anxieties will be two-way: teachers will need to know what the limits are about what to expect, and your child will be anxious about slotting back into the routine, friendships and work.

Ideally, teachers and school will have kept in touch during the child’s absence, as will have friends. This makes the transition from home to school easier. It is important that you have a conversation with the teacher about exactly how much your child knows about their illness.

These are things to consider:

  • Change in physical appearance – be guided by your child about how they
    want to approach this. Some may be happy wearing funky hats or wigs if they have lost their hair. Looking different may not be an issue for others, and they may actually be quite proud that they are different. Having a close-knit group of friends around will be very important. These are friends who have been on the journey with your child, and so changes will not be a surprise to them.
  • Physical limitations – some drugs may leave your child unable to participate in sports. If they are already feeling isolated, this can increase their feelings of frustration. Teachers can compensate for this by giving them other tasks to do. Most children will do what they can.
  • Falling behind with work – hopefully, work will have been provided during your child’s absence. If they are at secondary school, you will need to identify one teacher who will coordinate this. It is important to focus on the skills rather than the content of the curriculum, and this will ease your child’s anxiety. Talk with the teacher about what is key for your child to do, what can be cut down or out altogether, and draw up a realistic plan together about what can be done. Involve your child in this; it will enable them to feel more in control.

For the teacher:

  • Try to visit the child in hospital and at home before they come back to school. Take messages to and from friends and classmates. Talk to the parents about any concerns they may have. You don’t need to have all the answers, but you can take away any concerns and get back to the parents.
  • Liaise with the hospital tutor.
  • Talk with the parents about how much their child knows about their illness, so that there are no mixed messages.
  • Talk with the child about how much information they would like others to know and who should know.
  • Prepare the class for the return of the child. Explain any changes in appearance, and ask the class if they have any concerns, as well as talking with them about how they might help.
  • Integrate the child into activities within the classroom. This is important if they can’t join in everything.
  • Ensure that there are no physical barriers and that the child has easy access to everything. This may mean making some slight changes to timings, e.g. letting them slip to the toilet before breaks.
  • The child returning to school may be experiencing some effects from the brain tumour and treatment, some of which may hinder their learning. A few of the changes may be memory impairment, poor coordination, fatigue, speech changes, and processing information may be a little slower. When each child returns to school, it is important to assess their needs again and make a work plan that suits the child. Depending on the severity of changes to the child, we would recommend that each child has an EHC plan.

Don’t be surprised by some parents’ reactions. You will be astounded at how supportive they can be. Equally, there will be some parents who don’t know what to say or how to react. And at the far end of the continuum, there will be parents who, through ignorance, unintentionally cause hurt. For example, they may tell their own child that they should no longer play with your child, for a variety of reasons. Concentrate on the critical mass – those parents who you know you can talk to and who will give in return. Often adults will be looking to you to take the lead. Help them out. Let them know that it is okay to talk about your child or, if you are having a bad day, that you would prefer to be on your own. Sometimes, practical things speak volumes – leaving a cake on the doorstep or having a brother or sister over for a sleepover.

Want to speak to other parents that have a child with a brain tumour?

Have a read of our ‘Connect with others’ page, or get in touch with brainstrust, and we can organise this for you.

You can call us for help any time on 01983 292 405.

How to Have a Difficult Conversation Guide

We know how hard it is, explaining brain cancer, and having to hold those difficult conversations.

This guide helps families with approaching these moments. It features tips that will help you can get your thoughts together and clarify how you feel about what it is you’re facing, so that you can hold better conversations and feel more in control.

Download the guide now

Did this information make you feel more resourced, more confident or more in control?