14 Sep 2017
“I remember standing and looking at the dual carriageway that runs outside Birmingham Children’s Hospital and thinking,
“How can you all be carrying on with your lives, don’t you know what just happened?”
Now, every time I pass the same window, I think of the parents that are looking out and thinking the same thing.” Sarah Clayton, CEO of Simple Stuff Works.
September is Childhood Cancer awareness month but for the family behind Simple Stuff Works, every month is cancer awareness month.
Ten years ago, in September 2007, Abi, the daughter of Sarah, CEO at Simple Stuff Works, went to Birmingham Children’s Hospital for tests. After several months of going backwards and forwards to the GP, Abi was booked in for a scan. On the morning of the appointment Sarah promised a trip to Toys R Us, but first they had to go to the hospital. By late that afternoon, the importance of toy shopping was swamped by the news that a large tumour had been discovered on Abi’s cerebellum.
Every day, at least 10 children and young people get the news they have cancer in the UK.
10 families changed immeasurably.
10 uncertain journey’s.
Yet, with thanks to investment into treatment and research, four out of five young cancer patients can be successfully treated.
To mark Childhood Cancer Awareness Month, we interviewed Abi and Sarah to find out more.
What do you remember about your cancer diagnosis?
Abi: I remember being a bit wobbly and not understanding what people were saying. I remember the very scary walk up to the hospital.
Sarah: My clearest memory was a nurse putting her arm around me and her badge pressing against my face. I’m not a very touchy person and it made me feel really uncomfortable.
Who was your favourite professional?
Abi: Clever Claire was a play therapist and I remember laughing when she tried to explain to me what was going to happen with a tube going up my nose. She wasn’t making any sense because she put it on the dolls head, we sorted it out in the end and had a good laugh.
Sarah: There have been so many health practitioners, nurses, teachers and therapists but one constant has been Dr Peet. I first met him at about 9pm on Abi’s first night in hospital. He gently talked about what he had seen on the scan and what needed to happen over the next few days. I came to know the room we were sitting in as the ‘Room of Doom’ and quickly worked out that it was where you were taken for terrible things to be said. At one point, I refused to go in there anymore but it made no difference, terrible things still needed to be said.
Dr Peet has been honest, kind and compassionate from Day 1. He listens to Abi, genuinely cares about her views and has been a source of support and honest information (no matter how painful) from the very beginning. He has been Abi’s consultant for 10 years and recently signed us off. We will meet her new consultant in the coming weeks but I will always be eternally grateful to him and am lucky to consider him a friend.
Tell us a memory you will never forget.
Abi: Me and Clever Clare were playing with Hama beads and a little girl made us jump. The Hama beads flew in the air so it was racing Hama beads. I also remember being terrified when Clever Clare had to tell me what was going to happen in my big operation.
Sarah: I’m afraid there are too many moments that flash up before my eyes. Every anaesthetic has been tough, the wound on the back of Abi’s head after her surgery. The severe burns behind her ears during and after radiotherapy, her beautiful long blonde hair falling out in my hands as I brushed it. Trailing behind Abi as she went to the toilet whilst hooked up to four IV pumps delivering chemo, anti-sickness and fluids. Watching a machine breathe for her in intensive care, holding her little foot during every MRI Scan, praying for a good result. Despair as she would vomit another NG tube up knowing we needed to get straight to the hospital to have another. Worst of all, the funerals of children with whom she had become friends, knowing that the next could be hers.
However, I will also never forget the people we met along the way. The parents who will be lifelong friends, the sheer bravery, determination and grit of children facing gruelling treatments. The elation of good news, the kindness of others and the simple beauty and pleasure of the once ordinary and mundane moments.
What would you like other people to know about Childhood cancer?
Abi: I wish I never had cancer. I wish people understood that I can’t hear very well, that I struggle to understand things quickly and because of my memory, I can’t play ‘My Grandma went to the shop and bought’.
Sarah: That it’s never actually over. The treatments used have lifelong effects. Cured doesn’t mean that you are back where you started. I wish people knew how lonely it can be for some children after treatment. I would also like people to know how little is spent on research for childhood cancers compared to adults. If you are going to donate money for research for children’s cancers look carefully at who you donate to, Christopher’s Smile is a great place to start.
Who has had the biggest impact on you?
Abi: Clever Clare, the play therapist who made things a lot easier for me.
Sarah: Abi. I had no idea a child could be so bloody brave. I am so proud of her and the way she has handled her experiences. I can’t wait to see her enjoy the next phase of her life as she starts college.
For us, we need an awareness month to highlight the stories, to get us talking about Childhood Cancer, to cause change and get the essential funding needed. For the Simple Stuff Works family though, Childhood Cancer Awareness month is also January, February, March, April, May, June, July, August, October, November and December.
Written by Rachel Wright, a nurse, author and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and recently published her memoir ‘The Skies I’m Under‘. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.