What Not To Say.

In this blog, we discuss 'what not to say to the parent of a child with cancer', written by our guest blogger, Nikki K. from Unicorns, Dinosaurs & Me.

I'm Nikki and I'm a self-employed copywriter at www.nikkiknight.co.uk and blogger at Unicorns, Dinosaurs & Me.com. In February 2022, ironically on World Cancer Day, my whole world was turned upside down when my 4-year-old boy was diagnosed with Acute Lymphoblastic Leukaemia.

Very quickly, I found that there were certain things that people would say that were, at best extremely irritating and at worst downright insulting. In recognition of September being both Childhood Cancer Awareness Month and Blood Cancer Awareness Month, I wanted to share with you some examples of what not to say to the parent of a child with cancer.

You're a superhero
I find this one very difficult to deal with. I know it's said with love, support and admiration but I'm really not a hero. I'm not doing anything that any other parent wouldn't do. I'm just caring for my child as best as I can during a difficult time. Besides, it's not like I had a choice.

Instead of saying this, try saying something like "it must be so tiring trying to keep everything going and stay positive".

Let me know if I can do anything/if you need anything

This one again is said with the very best of intentions but it is incredibly hard to answer. For one thing, the parent you are saying it to may not have any clue what they want or need, especially in the early days of the diagnosis. Their world has been turned upside down; they have been told that their child has a deadly disease; they are processing this information and what comes next; they are coming to terms with the treatment plan and prognosis for their child; they are working out the logistics of notifying friends, family and employers; they may need to make arrangements for siblings and pets; they may have to prepare to travel a long way from home so that their child can begin treatment. Thinking of something to ask for is impossible because they just don't have the mental capacity to think about everyday things like shopping, meals, grass cutting or laundry.

Secondly, it can be incredibly difficult to admit that you need help, especially in a time of crisis. Actually plucking up the courage to approach one of these friends and take them up on their offer can be impossible as you just don't want to take advantage or feel like a burden.

Instead of saying this, try saying something like:

"What are your favourite meals? I'm going to sort some dinners for you to pop in the freezer."

"Drop your washing round on the way past and I'll stick it through my machine while you're at the hospital."

"What's your email address? I'm going to send you a Just Eat/Uber Eats/Deliveroo voucher."

Should they be eating that?

This is a particularly unhelpful question, parents feel guilty at the best of times but having a childhood cancer diagnosis amplifies that. Trust me when I say that the parent of a child with cancer will question themselves over everything: have they got a temperature? Are they eating enough? Are they drinking enough? Was the cancer caused by something I did? Was it caused by something I didn't do?

For someone else to start questioning what you are doing is incredibly insensitive. Especially when they have no idea about the care or medication that the child is on. Many children undergoing cancer treatment will be on steroids at some stage which will make them want to eat a lot of food at all times of the day and night but only a select few specific things. I was often making spaghetti bolognese or chicken nuggets and chips 3, 4 or even 5 times a day at the height of my son's steroid induced hunger.

On the other hand, some children will have their appetite severely affected by the chemotherapy so the fact they are eating anything is something to celebrate. One of the chemotherapy drugs that my son takes daily severely affects his appetite so when he started school I sent his lunchbox filled with snacks like crisps, cake and sweets on the off chance that he may decide to eat something.

Instead of saying this, try saying something like "what things are the steroids making them crave?" or "can you tell me about tube feeding? I'd like to understand more so that I can support you."

Silence - especially ignoring siblings

Receiving a diagnosis of cancer for your child is an eye-opener in more ways than you might think. Once you start to tell people, you will be surprised and possibly disappointed by the people that keep in touch and the people that don't. When I told my friends, there were a few that just ceased communication with me even though we had messaged several times a week up until the point of diagnosis.

Those that do keep in touch sometimes forget to enquire about his sister which can be very upsetting. As the sibling of a child with cancer, your life changes overnight as well. All of a sudden your family is essentially split up because at least one parent is at the hospital with the sick child, the sick child gets lots of attention and presents which continues well beyond diagnosis and they are taking up a lot more of the parents time with things like appointments, medication, tube feeding if required, the sick child is usually allowed to eat things that the well child isn't and in quantities that the well child isn't allowed. Plus the well child has all their own fears and worries to deal with as well, Being the sibling of a child with cancer is really tough.

Instead of this, try asking if you can get a present for the well child if you can take them out for a treat or just asking how they are coping or getting on with school and hobbies.

It's the good cancer

This is a particularly upsetting thing for people to say. At the end of the day, being told that your child has cancer is every parent's worst nightmare. There is no 'good' cancer. Cancer is still cancer, it's frightening, the treatment is cruel and basically, it just sucks. There are some cancers that have higher rates of survival and there are some cancers that have shockingly low rates of survival. Acute Lymphoblastic Leukaemia does have a good survival rate of around 95%. Don't get me wrong, those odds are great but if your child has been diagnosed with cancer then you don't tend to feel so positive about odds like that. Besides, there is still a 5% chance your child won't survive and that is a terrifying thought to deal with.

Instead of saying this, try saying something like "I'm so sorry this has happened."

People who are immunosuppressed can just stay at home.

Aargh! Can you get any more insensitive than that?!?

Treatment for Acute Lymphoblastic Leukaemia lasts for 2 years. The child is immunosuppressed for 2 years. Are they meant to stay locked up at home and not go to school/the park/the supermarket or anywhere else for 2 years so that someone with, what is a mild illness for them, doesn't have to stay at home for a few days? Is the parent meant to stay at home for 2 years and not work so that they can stay with their immunosuppressed child? No. That's both impractical and deeply unfair.

Instead of saying this, try saying "are we ok to meet up as we planned, I have XXXXX infection" or "my child has chicken pox, I'll keep them at home until the spots have all scabbed over but I wanted to let you know."

Our family are only 7 months into this life and it will be with us for many years to come, treatment finishes in March 2024 but it will be another 5 years after that before he is finally given the all-clear. During these 7 months, I've heard all of these and many more and I'm sure that in the coming months and years I'll hear many more insensitive and thoughtless comments. I'm hopeful that as time goes on silly comments will be like water off of a ducks back to me.

I share our family's experiences of childhood cancer on my blog and social media which are linked below.

Nikki Knight, Unicorns, Dinosaurs & Me.

Instagram: @unicornsdinosaursandme

Facebook: @unicornsdinosaursandme

www.unicornsdinosaursandme.com

Categories: children, Family, Guidance, support, Working Parents