Telling people about the diagnosis

It’s completely up to you to decide who needs to know. You might decide based on who can support you best at the time. You might want to tell close family so they can support you emotionally, or to tell neighbours or close friends so they can provide practical help by looking after siblings. You may also consider telling work colleagues for practical reasons. 

Knowing what to say to people can be the hardest part. You may be wondering how much to say, and how to find the right words when you feel confused yourself. Writing things down first can help with this. Think about:

• What information you want to share

• Which questions you might get asked

• What help you want from the people you’re telling

• Remember you only need to share as much as you’re comfortable with.

How much you tell other family members or friends about your child’s treatment is up to you. The hospital staff are not able to share any medical information with other family and friends without your permission.

You don’t have to always be the person to share the news. You could ask a family member or close friend to be the person who tells people or answers questions, to take that burden off you.

You can also ask your medical team or social worker to help explain the details to your family.

This can be a very different conversation. While you might be worried about protecting your other children, most will know something is wrong. If they aren’t told enough, they can often imagine something worse than the truth.

More information on support for siblings

The support of an extended network of friend and/or family can ease the pressure, both emotionally and practically.

It can help to give the information out once to one person. They can then tell the others for you.

Some families have found updating a blog or a private group on social media helpful. This way you can give updates at at time that is best for you. You also only have to do it once. You can get your child involved in this; they could take pictures, write or make videos about their own experiences, if it’s appropriate.

If you need time off work to attend appointments or stay at the hospital, you may need to tell your employer. What and how much you tell them is up to you, but as a general rule, the more people know, the more they may be able to support you. 

It’s important to keep your child’s school informed, particularly if they have siblings there who might need extra support.  Your Paediatric Oncology Outreach Nurse will liaise with your child's school and put in place any support and training needed.

Family and friends may experience similar levels of shock, and it can often be a time of pulling together. 

Relationships can sometimes be strained as family and friends react in different ways.

Some families find it hard to talk to one another about cancer. They may be frightened about the emotions this could bring up. Or your friends and relatives may not want to talk to you about your child’s cancer because they worry that you won't be able to cope with talking about your situation. They may not want to upset you. This can make you worry even more, as well as strain your relationships. But it is important to know that even if your family aren't talking about your child’s illness, they are probably constantly thinking about it and wanting to find ways to help.

At the same time, there’s a good chance there will also be people who will know the right thing to say, even if that’s simply acknowledging, “I don’t know what to say”. And while some family and friends may not react as well as you would like at first, they can still end up being great supporters.