Talking to children about death or cancer can be difficult, so I wrote books to help them understand

I feared my kids would be alone

In early 2012, my left breast felt hot and swollen. I went to the GP and got antibiotics, which improved the situation. But then I felt a lump.

Ironically, although I am usually a total hypochondriac, I wasn’t that worried. I’d been to the breast clinic before and had mastitis, so it wasn’t unfamiliar. However, this time, things didn’t go so smoothly.

I had gone by myself, so had no emotional support, and during an ultrasound, the whole room suddenly went eerily quiet. I remember asking if this was cancer. When they said, ‘It’s possible,’ silent tears rolled down my face.

I whispered, ‘I can’t die. My kids are only three and six, and their daddy is already dead.’

They did biopsies there and then. That was on a Friday. On Saturday I got a letter saying my recent smear test had detected pre-cancerous cells and I would need a colposcopy.

I panicked, as I thought that meant not only did I have breast cancer but it must have spread and was incurable.

It turned out that, yes, I did have breast cancer. But the smear result was unrelated to the breast cancer, and both were curable.

I felt incredibly lucky. Lucky to have found the lump. To have gone to the GP. To have been referred and diagnosed so quickly. To live in a country where treatment is available and free.

There were so many people I had to tell

My first husband, Martin, had died in April 2009 from a heart attack at 34 years old. By the time of my diagnosis, I was living with my new partner, John, and between us we have seven children, then aged between three and 15.

Alex and Olivia immediately asked if I was going to die, as my friend’s sister had just died from breast cancer the previous month.

I had to tell my parents over the phone as they live in Germany, which was tough as my mum’s cousin had died from breast cancer in her 30s.

Then there was my sister, who was pregnant with her first baby. Telling her felt like stealing her thunder.

Thankfully, John was amazing. He was there for me at every appointment. When I was too ill to look after the kids, he took holidays from his job, then unpaid leave, and then quit when his work demanded he give them a return date. I couldn’t have done it without him.

It’s difficult to talk to children about death

After my husband died young and suddenly, I realised how little support there was for young grieving children and their carers or families. I have always loved children’s books, so I wrote two fully illustrated books to help families explain the difficult subject of death in words very young children can understand.

I did the same thing when confronted with my cancer diagnosis, and now have a third book called Is It Still OK to Have Cuddles?

It is our natural parental instinct to want to protect our children, but sadly we can’t stop bad things from happening. So we need to protect them in a different way – with the best version of the truth, and by helping them understand.

Children will sense that something is wrong anyway and what they imagine in their heads is usually far worse than anything we can tell them. It is important to remember that to a child, there is no difference between asking, ‘How does a plane stay in the air?’ or, ‘What’s cancer?’ – they simply want to understand.

I remember how scared I was that I might catch cancer when my granddad was dying, and I was 13 at the time. Nobody had explained to me that it wasn’t contagious – not because they didn’t want to, but because they didn’t think of it, and I had been too afraid to ask.

It's also important to explain that none of this is their fault, as young children will often blame themselves for a bad situation. Is It Still OK to Have Cuddles? helps to do all of this.

Honesty is so important

I decided very early on to always be honest with my kids. I have had many difficult and awkward conversations, but I have kept my promise to them and myself.

Keeping their trust was most important to me. I didn’t want them to think, ‘Why didn’t mummy tell me? Why didn’t she explain?’ I felt it was – and still is – my job to help them understand, and to build their emotional resilience. They are now 13 and 16, and I can honestly say I have never regretted that decision.

Writing my book was lovely and tricky in equal measure. It put me back into a very difficult time, but I really wanted to help other families have open conversations with their children, as it made such a positive difference to us.

I am also working on a second book in which Mummy’s cancer is incurable, which has been much harder to write.

It’s early days, but I am hoping my book is helping many young families. I donated copies to every Maggie’s Centre in the country, as Maggie’s Edinburgh helped me so much when I was going through treatment.

It’s OK to have cuddles

To anyone else trying to talk to young children about cancer, my advice is to be honest.

Use easy-to-understand, age-appropriate language, and always find the best version of the truth. For example, when my kids asked me if I was going to die from my breast cancer, I said that it was a possibility, but that the doctors had told me that there were lots of treatments and medicine that could help me get better. Explain that cancer is not contagious. That it is still OK to have cuddles, kisses and be close.

You can find out more about Elke and details on how to buy her book on her website.