Q&A with Elke Thompson
By Dr Ioanna Nixon
When Jack Wee Rabbit and Dr Betty stories were born, I made a commitment. Commitment I would bring my knowledge and experience as a doctor, and as a resilience coach, as well as my deep and broad network to talk about sensitive matters related to a child. From body acceptance, development, health and wellness self- confidence, diet, to bullying, equality and diversity, grief and illness.
It is easy to talk about the “easy”, but it is increasingly difficult to talk about things that happen in life and are more tricky to explain to a child. This week, Jack N Betty blog is meeting with our dear friend Elke Thomson to talk about a difficult, sensitive and important matter: “Mom has got cancer; how to speak to your child”.
Q: You write books for children on very sensitive topics, such as bereavement and cancer. How did you decide to write about these sensitive topics?
In April 2009 my 34-year old husband died very suddenly and unexpectedly from a heart attack whilst away on a trip with our three-year old son Alex. Our daughter was only 11 months at the time of his death. Naturally Alex asked a lot of questions about when Daddy would come back and what had happened, and when I couldn’t find a book suitable for pre-school children to help me explain death and funerals, I decided to write my own. My background is graphic design, and I had always had a strong interest in children’s books, so it wasn’t that big of a leap for me. What I hadn’t counted on was how difficult it would be to get it published though, but that is another story…
Not quite three years later, in February 2012, I found a lump in my left breast and shortly afterwards was diagnosed with an aggressive breast cancer. My kids were three and six. Again, I had to find the right words to help them understand, and there was very little on the topic I could find that used child-friendly language and imagery.
Q: having been a mom with cancer yourself, how did you approach this with your children?
I am a huge fan of honesty, and promised my children very early on that they could ask me any question, and that they would always get an honest answer. Children sense when something isn’t right, and they are actually more scared of what they don’t understand, than they are of the truth. When I got my breast cancer diagnosis, I knew I had to be honest, and really listen to my children’s fears and questions. My own children were 3 and 6 at the time of my diagnosis, and my new partner came with five daughters, aged 4 to 15.
As my friend’s sister had died from breast cancer two weeks before, I knew that my children would instantly understand the severity of the diagnosis. When we told them, the first question Alex – my 6-year-old son – asked, was: “Will you have to die now, Mummy?” My answer was honest. I said: “It’s a possibility. It could happen. But the doctors have told me that there is lots of medicine they can give me that will hopefully help me get better again.” And then I explained what would happen during chemotherapy. And when all my hair did start falling out, the kids didn’t panic, because they knew it would happen. That was a great comfort.
Q: did you even think about omitting the truth?
Both when my husband died and when I received my own cancer diagnosis, I knew I had to be the one to tell my children and help them understand. Children look to their grown ups for answers, and the last thing I wanted was to lose my kids’ trust or for them to blame themselves for the situation. I know parents who – with the best intentions! – try to ‘hide’ their cancer treatment from their kids for example, or who tell them that their daddy is still at work when he has in fact died. Because they don’t know what to say or how to say it, and because they want to protect their children. But unfortunately we don’t protect them by pretending that everything is hunky dory when it isn’t.
Young children will almost always blame themselves for a situation, so it is very important to use clear, precise and child-friendly language, and stress that this is not their fault.
Imagine using euphemisms such as ‘s/he has gone to sleep’ or ‘s/he has gone to a better place’ when telling a young child that their loved one has died. Both phrases may sound ‘nicer’ and potentially more child-friendly to us adults at first glance, but young children take everything very literally, so hearing that ‘s/he has gone to sleep and can never come back’, followed by ‘night, night, sleep tight, bedtime!’ can trigger panic attacks and sleep problems for example. Or imagine being three years old, and being told that ‘Daddy has gone to a better place’, which immediately triggers thoughts like ‘Maybe daddy went away because I was naughty/I didn’t eat my dinner/I didn’t tidy my room’, ‘Why couldn’t I go with him?’ or ‘When can we go visit?’ So instead of creating comfort, we actually trigger fear, panic and guilt in children. The best thing we can do as adults is to create a safe space for children to verbalise their worries, no matter how big or small, and to ask questions without fear of being told that they are ‘too small’ or ‘don’t understand’.
When I was 12 for example, my Granddad was diagnosed with incurable lung cancer, and I remember how scared I was when Mum told me we would go visit him in hospital. I thought I could ‘catch cancer’ and would have to die myself. Nobody had explained to me that cancer wasn’t contagious, and by then I was too scared to ask.
Q: where did you find inspiration, inner strength and resilience during that difficult time?
That’s a difficult question. I’m not going to lie – being diagnosed with cancer and having to undergo chemo, surgery, radiotherapy and hormone treatment, combined with the constant worry if treatment would work, was tough. I used Maggie’s Edinburgh a lot – just having a safe space to go was amazing. Everyone there – staff, volunteers, fellow patients and their families – were amazing and everybody just ‘got it’. I went to Maggie’s a lot, and received one-to-one psychological help, as well as doing group classes like thai-chi, nutrition and lots of other things, or just hanging out and having a cup of tea.
I talked openly about my fears, and I connected with fellow patients over Facebook. I remember writing a list of all the people I knew who had had breast cancer and had survived, to change my focus to a positive outcome. That really, really helped me a lot. I also tried to focus on all the things I could still do, rather than the ones I couldn’t, and used the opportunity to try out as many big earrings as possible. Humour was another great thing – I remember drawing snakes around my dark veins that had collapsed from the Epirubicin, and making little signs with ‘taste buds, this way please’, then taking selfies and posting them on social media. It wasn’t to everyone’s taste, but it really helped me. A bunch of young widows sent me ‘themed parcels’ after every round of chemo, which was just so lovely and kept me going. I think the first week I got headscarves, then earrings, then necklaces, socks when I lost most of the skin from under my feet from the Docetaxal, and finally underpants (not sure why, lol!) and chocolate medals. I also commissioned a photographer to take some nude photos of me during chemo, which was my way of taking control and celebrate my body as it was – something I struggled with. The photos are stunning, and I am so glad I did that.
Q: I am a fan of your books. As an oncologist I know how many parents try to find best way to discuss cancer with their children. How was your book received?
The feedback from oncologists, radiologists, staff and psychologists at Maggie’s Centres and families in that situation alike has been amazing. “Is it still ok to have cuddles?” helps to explain the difficult topic of breast cancer and cancer treatment easily and honestly, in age-appropriate language, whilst being clinically correct throughout. As it is our autobiographical story, we share some of our own pictures at the front and the back of the book, which help children to further identify with the characters in the book, and help all families to feel less alone. It gives hope and adults the confidence and courage to say what they need to say to help their children understand.
In April 2022 “Is it still ok to have cuddles?” was awarded the Certificate of Excellence in Literature at the 2021 Story Monsters Approved Awards in three categories: Picture Books, Family Matters and Health and Wellness.
Q: what are you working on now? Any other topics you can help us start a conversation with a child?
I am currently working on a fourth picture book, explaining incurable breast cancer to young children. The focus is very much on living with cancer, including children in the conversation and day-to-day life, and on supporting kids after loss. The important message – as it always is in my books – is: “It’s okay to be sad, but it’s okay to be happy, too.” This is my first picture book which isn’t solely based on first hand experiences, but I have worked closely with many affected families, oncologists, staff at Maggie’s Cancer Centres, as well as at our local childhood bereavement centre and a pre-bereavement hospice counsellor, who all agree that there is nothing like this currently on the market, and how important and needed it is.
As a general guide I would say always be honest, but always look for the best version of the truth. If you don’t know an answer, it’s okay to say “I don’t know. But I will try and find out, and once I know, I will let you know.” Help children understand, and really listen to their worries. Just because you think it’s unlikely or maybe a bit silly, doesn’t mean it’s not a really big concern to your child. You and I know that daddy didn’t die because your son or daughter didn’t tidy their room, but they might really think it is their fault, especially if they are very young.
Q: what advice would you give a mom dealing with cancer now?
Be open and honest with your children, but always find the best version of the truth. When Alex asked me if you could get cancer twice for example, I replied: “Yes, but I also know many people who have survived it twice.” Take time out for yourself. Ask for help. Is there someone who can walk the dog/do the shopping/do the school run/bath your kids at night? It’s okay to ask for help. Many people WANT to help, but don’t know how to. Make sure your kids know that cancer isn’t contagious, and that it’s still okay to have cuddles and kisses. Find a Maggie’s Centre near you and go. Or get in touch with other charitable organisations like Breast Cancer Now. Don’t google your symptoms – speak to your care team instead. Take one day at a time – or one hour at a time if you have to. It’s okay. The mess in the house doesn’t matter. Keep thinking ‘What if it’s all going to be okay?’, instead of ‘What if it goes wrong?’ Focus on the positives. Listen to your body. Do what’s good for your soul. Keep seeing the funny side. Talk to people.
You can find out more about Elke, her books and her journey on www.elkethompson.com
Click here to buy online and download the book “Dare to Dream Big”Dr Ioanna Nixon is a senior oncologist in Glasgow, UK. She specialises in sarcomas and her research focuses on novel cancer therapies, quality of life and clinical innovations. She has led the Scottish Sarcoma Network since 2015 till early 2022and is the Cancer Innovation Lead for the West of Scotland. She is an honorary clinical senior lecturer at Glasgow University and an academic at Strathclyde Business School, researching on health policy and leadership. She is also an executive coach, specialising on resilience, leadership, and wellness