What to do when you hear a friend/relative has a child with cancer and what NOT to say – Neil Ranasinghe

“I recently posted a short video for Childhood Cancer Awareness month. Before I posted it, I asked a parents’ group (Paediatric Oncology Reference Team – PORT) I have been involved with if they had any suggestions for what I should cover. Their ideas were many and brilliant — in fact, so many valuable suggestions that I could not fit them into my short video.

With help from a few members of the group, I have written up our suggestions for what to do and what not to say when you hear that somebody’s child has cancer. The focus of this article is pediatric oncology as that’s our lived experience, but much of it applies to any life-limiting illness or disease, and, similarly, much of it to an adult that has a life-limiting disease. We have given examples, and also quotes.

We are not being critical of people for using these terms. We don’t want to make you feel bad if you have said any of them; it is to help you in the future. I have said some of the things that we are telling people not to say, and one of them in the last month.

We hope you never have to use any of this advice.

What to do

This section provides some practical suggestions on how to help out. It is the thought that counts in all these things. Just knowing that the family is in people’s thoughts makes a massive difference. All of us remember the acts of kindness shown to us, and some of these things happened nearly 20 years ago.

Look after the parents and siblings

• Provide supplies and goodies for mother/father in hospital.
• Remember that parents and siblings are likely to be emotionally drained at this time, so don’t expect to stay with them for too long unless they want it.
• Try to keep involving parents and siblings in ‘normal’ life. Quiz nights, walk invitations etc but make it clear, and understand, that it’s also fine for them to drop out at short notice.
• If you want to get a little gift for the child on treatment, don’t forget the other siblings (somehow include them, however small).

‘Some dear friends cooked a curry for us when our son was very ill, kept it warm and drove for half an hour to deliver it to us in hospital. They said nothing, just dropped it off with us and left. We will never forget their kindness.’

‘We were particularly grateful for some lovely soft hats (when our guy had a cold head), and some magnetic play boards, which were a fab distraction for hours and could be disinfected, and cute matching T-shirts for the kids.’ 

‘A friend’s husband smuggled in red wine in a coke bottle for me, when Alex had returned to the ward. Perhaps this shouldn’t be shared, although maybe it should!!! So kind and kept me sane!!’

Be there

Be there. Don’t wait to be asked. Offer specific and practical help. Here are a few examples:

• Maybe a sibling needs to get to a club or collecting from school.
• The family may have a dog that will need walking.
• Be present – just show up – with coffee, with treats, with cake … doesn’t matter what – it’s lovely to know you are in people’s thoughts.
• Offer to drive to a hospital appointment.
• Take other kids for the day or just to the park or a reading session.
• Offer to take care of the school run for other children.
• Accompany them to hospital visits. If you are allowed to visit, perhaps do not stay too long to minimise infection risk (if in doubt ask parents).

‘A friend turned up in the middle of the night when my son was in intensive care and sat with him while I grabbed a few hours’ sleep. She just turned up, it was so kind of her.’

Cook meals

Try to be practical without being asked, here are a few examples:

• Cook/bring food over.
• Perhaps just leave things on the doorstep sometimes – the occasional pie, or flowers from your garden, or a little note. No need to speak but unbelievably precious.
• Phrase things in a positive way: ‘Hey, I am doing some batch cooking at the weekend, do your guys prefer cottage pie or lasagna, and do you have any allergies or things the kids don’t like?’ rather than, ‘Can I make dinner for you sometime?’
• Make a picnic for the family to bring into hospital to share.

Say something

Tell them you heard that their kid had cancer and you were really sorry to hear. It is very difficult to know what to say, but I strongly recommend that you say something. Don’t say or do nothing. If the other person doesn’t want to talk about you’ll soon know. You can say that you don’t know what to say. By saying something, you are acknowledging something, and not saying something ignores it.

‘This was a difficult time for me, good friends and colleagues didn’t know what to say when my daughter was diagnosed so they didn’t say anything. Perhaps unreasonably, I felt let down.’

‘A friend used to text before every visit to the Marsden, it was a lovely feeling that she was thinking of us.’

Stay away if unwell

Stay away if you or your kids are sick. Children with cancer can get very unwell from infections. This is because their immune system is suppressed by chemotherapy.

Chickenpox is also particularly nasty and can make children with cancer very unwell. If a child with cancer is exposed to chickenpox, they will need to receive a preventative medicine. If they develop chickenpox, they may need an admission to hospital for treatment.

•  Don’t visit if you or your kids are unwell.

What not to say

When having a conversation, be tactful and mindful. The parents will probably be sensitive, emotional, exhausted, worried, and possibly in survival mode.

Stats and internet research

Don’t turn into an ‘expert’ and tell the parent what you have found on the Internet. Let the parent tell you stats if they choose to.

• Don’t send links to things you have found on the Internet.
• Don’t say get another opinion unless the person is seriously considering it. It can be a good thing, but generally the tests don’t get this stuff wrong, and another opinion takes time and might mean additional invasive testing.

‘My son was one of the ‘unlucky’ 15%. We specifically asked the doctors to tell us what we needed to know when we needed to know it. We had placed our trust in them to guide us through.’

‘Don’t use the stats to say ‘wow all will be OK’. My daughter had an 80% chance of survival and a friend said – great! But when I asked if they’d send their child on a holiday where 5 children went but only 4 returned, they didn’t know what to say. And even good stats are stats … someone has to be in the duff end!’

I know how you feel/ making comparisons

• Don’t say, ‘I know how you feel.’ You don’t.
• Don’t compare children’s treatment to whatever your adult family/ friend is experiencing.

‘I have had people saying to me that the death of their dad/mum/ grandparents is the same as what we have been through- never ever say that, there is no comparison at all.’

‘Don’t compare the child’s illness to an experience you’ve had … one of the things that drove me mad was when people said it was like when their mum got ill (or similar) – in my opinion, the illness of one’s mother is nothing like the illness of a child.’

‘Comparing or trying to make it less bad (I had a friend who said she knew what we were going through as she had a cat who had leukaemia!)’

Think positively

Don’t tell them to ‘think positively’, ‘stay positive’, ‘be positive’. Merely saying, “Think positively” doesn’t help or change anything. It is more helpful to show support and sympathy by saying something along the lines of ‘let’s take one day at a time’ and asking questions about how the day or hospital visit went today.

• Don’t say ‘it will be fine’ – it’s one of the worst platitudes … none of us have any idea if things will be fine so don’t say things like this.

Let me know if I can help

Try to avoid saying things like ‘call me if you need anything’, or ‘let me know if I can help’. Life is upside down, and finding the energy or time to call is impossible so it doesn’t happen. Be the one to make the phone call, send the text to ask how their day has gone etc.

Summary

It is the thought that counts in all of these things: practical help, spending time rather than money, and ensuring that the family know they are in people’s thoughts. Keep these in mind, and your efforts and words will go a long way.

Thank you

Thank you to the various members of PORT who provided the content for this article.

Thank you to Jo Strong for helping produce this article. Thank you, Dr. Jessica Bate, for helping with the section on staying away if unwell.

What is PORT?

Paediatric Oncology Reference Term (PORT) is a group of parents of children with cancer and survivors. We review patient information sheets, consent forms and assent forms for pediatric oncology clinical trials in the UK. We have reviewed documentation for about 40 trials. We also advise clinicians and researchers on aspects of clinical trials from the patients’ and parents’ perspective. We are a voluntary organization and not tied to any hospital or charity.”

Written by Neil Ranasinghe
Columnist at OncoDaily London Bureau

Other posts featuring Neil Ranasinghe.

Neil Ranasinghe (BA) is the parent of a childhood cancer survivor. He has volunteered his writing and leadership skills to global and UK-based cancer organizations since 2004.

Neil co-founded the Pediatric Oncology Reference Team (PORT), who review pediatric oncology clinical trial documentation for parents and patients. This parent-clinician collaboration improves trial design and ultimately increases clinical trial participation. Neil is also lay representative for some clinical trials.

Neil is active in the International Society of Pediatric Oncology, which advocates for children with cancer in low- or middle-income countries, and is a Global Mapping Program committee member.

Neil is a Lead Technical Author at the London Stock Exchange Group.