What Not To Say When A Child Has Cancer

Finding out that your child has cancer is one of the most terrifying things you can hear as a parent (read our story here). It’s one of those nightmare scenarios that you imagine when you watch something like Children In Need but nothing can prepare you for if it actually happens to you. How you imagined you’d feel bears no relation to how you actually feel. Being told the child of a relative, friend or colleague has cancer is tough and knowing what to say can be difficult. This article will tell you what not to say and what to say instead to the parents of a child with cancer.

Once you’ve received a diagnosis, in our case B-Cell Acute Lymphoblastic Leukaemia, the next task is to let your family, friends and colleagues know about the diagnosis and what that means for you as a family. Once you start to tell people, you will likely be inundated with messages of support, love and well wishes. In amongst them, you might get a few well-intentioned but wide of the mark messages. It’s important to try and remember in your heightened emotional state that people who have taken the time to message you really do mean well and that they just don’t know what to say.

You might be reading this because you’ve been told that your relative, friend or colleague’s child has received a cancer diagnosis. You are likely to feel a number of things, shock being one of the main ones, closely followed by incredible sadness and a desire to help and support in any way that you can. It is important to provide support to the parents and the family but it is also important to choose your words carefully. Here is what not to say to the parents of a child with cancer.

I Know How You Feel

This one is a big no-no unless you actually do know how they feel. If you have had your own child fight cancer then by all means say this but if you haven’t then don’t say it. Just as bad as this is I can only imagine how you feel.

My own experience has taught me that imagining how you might feel if your child is diagnosed with cancer and how you actually feel when it happens are poles apart. Unless it happens to you there is no way you could possibly imagine it.

What to say instead

How are you feeling? They might not really know how they are feeling but give them the opportunity to offload some of their thoughts and feelings. It really does help to get things off your chest, especially to someone outside of the family unit.

My xxx Had That, They Died

This is a huge what not to say faux pas. Sharing stories of another child that you are connected to in some way who had the same type of cancer or indeed any kind of cancer when they didn’t beat it is going to help nobody. Even if it was your own child who sadly didn’t survive. Yes, you will understand exactly how it feels to hear the news of a diagnosis and to watch a child go through treatment but you will also know how important it is to stay positive.

What to say instead

When xxx was diagnosed, I found xxx really helpful. Try to remember what you found helpful when you were at the beginning of the journey. Perhaps share advice that you found useful or contact details of charities that provided assistance to you in the early days when you didn’t know whether you were coming or going.

Have You Tried xxx ‘Cure’

You can rest assured that the parents of a child with cancer are doing everything in their power to make their child better. Not everyone is into alternative therapies so please don’t try to promote some kind of cream, potion, spell, magic socks or whatever else you might have heard of unless you are specifically asked. This is another one of my top what not to say phrases.

What to say instead

What is the treatment plan? It’s as simple as that. Ask them what the plan is that their child’s doctors have recommended and show your interest in it. To the parent, this treatment plan is going to consume their lives for many weeks, months or even years to come.

Why Are You Doing That?

DO NOT question anything that a parent of a child with cancer is doing. Whatever they are doing is what they need to be doing. Trying to process the horror of the situation, the fear and guilt in case they somehow did something to cause it, and trying to remain strong for their child (and the siblings) is one hell of a lot to cope with. This coupled with exhaustion and most likely sleep deprivation is bound to cause some odd and questionable behaviour and decision making.

What to say instead

Can I help with that? Offering assistance does one of two things: it either lets the parent know that you are there for them, allowing them to feel supported, or, it makes them realise how silly whatever is they are doing is.

Everything Happens For A Reason

This may be true but these words will cut like a knife if you utter them to a parent of a child with cancer. The chances are they are blaming themselves in some way, either because they feel they may have done something to cause it, they didn’t spot the signs earlier or they didn’t seek medical help soon enough. Saying this will likely make the parent think that you blame them as well. This is definitely deserving of a place on the what not to say list.

What to say instead

I’m so sorry to hear this, please know that you are not to blame. Reassure the parent that all their fears about the diagnosis and run up to it are baseless and be there as a listening ear so they can get things off their chest.

I Knew It Was Cancer

If that’s true and you did have a suspicion that the child may have cancer, why on earth didn’t you say something? And if you did say something, essentially saying “I told you so” is not going to help anybody and may in fact cost you your relationship with the parent.

What to say instead

I’m so glad they have a diagnosis so that you don’t need to wonder anymore. Getting a cancer diagnosis immediately makes you question everything you’ve done so the best way to help the parent is to reassure them that they couldn’t have done anything differently.

They Will Be Fine

We all want that to be true and nobody more so than the parent however the sad fact is that not all children who receive a cancer diagnosis will be fine. That thought will be playing in the back of the parent’s mind at all times and hearing this makes them think “but what if they’re not fine, what if I lose my child”. That thought does not bear thinking about.

What to say instead

As I’ve already said, it’s important to remain positive but there will be times when the parent is struggling with that. The best things you can do are listen and be supportive if they are contemplating a bad outcome, especially if this is looking likely. If they are just having a wobble, remind them of all the challenges their child has successfully faced already such as numerous tests, biopsies, hair loss, procedures etc.

Let Me Know If I Can Do Anything

This is probably one of the most common ones, it’s certainly one that we heard a lot. On the face of it, it seems harmless and to a certain extent, it is. What you need to remember is that most people find it difficult to ask for help and when you are trying to process shocking news like a childhood cancer diagnosis, it’s extremely difficult to think about what may help you.

What to say instead

Take the decision out of their hands and say things like:

• I’ll make some meals for you to pop in the freezer, what do you like to eat?
• Drop off your washing and I’ll sort it out for you.
• Let me pick up the sibling from school and take them for a treat.
• What’s your address so I can send an Amazon/Uber/Deliveroo voucher

Should They Be Eating That?

The short answer is yes. The long answer is to mind your own business. When a child is undergoing chemotherapy their tastes changes, especially if they are on steroids and they will develop a monster appetite and lose their sweet tooth. Favourites for the Dinosaur are spaghetti bolognese or chicken nuggets, chips and ketchup. He eats these for breakfast, lunch, dinner and snacks. Questioning nutritional choices is not helpful, the parents will just be glad the child is eating something as there is likely to be a point in the chemotherapy journey where the child will not eat anything at all and may end up being tube fed. You also need to remember that the child will be seeing a wide range of medical professionals on a weekly basis and if they have no problem with the child’s food intake then you don’t need to worry about it.

What to say instead

What are the child’s favourite things to eat? Can I pick up more chicken nuggets (or child favourite) for you?

Silence

When your relative/friend/colleague tells you that their child has been diagnosed with cancer, the worst thing you can do is be silent. Yes, you want to give them space and time. Yes, you might not know what to say. I urge you, if you care about the parent, please send them a message, even if it’s just a “Hi, how are you? I wanted to let you know I’m thinking of you” message. Spending so much time at the hospital with a sick child can be an incredibly lonely and isolating experience. All of a sudden the entire family’s life has changed forever. The next few months or even years will be dominated by treatment and then even once it’s “all over” and the child has rung the bell. It’s not over. The child will still have regular checkups to ensure cancer hasn’t come back. There may also be lasting effects; hair will take a while to grow back, there may be scars from procedures and operations, there will be a great deal of emotional healing to be done, if there were complications there may even be things like amputations to learn to live with.

What to say instead

Literally, anything is better than nothing. There are several ideas in this list if you really can’t think of anything. You could also simply message to say you are thinking of them. Whatever you do, please message them so they know they are not alone.