I had been in hospital with Ellie (diagnosed with ALL) whilst she was having chemo as an inpatient. She would always become quiet and withdrawn when on medication and so my days were spent reflecting on our situation. Around that time I had seen a short film made by Andi Osho called Brit.I.Am, which was a visualisation of a poem she wrote about being British. It highlights the diversity and contrast in British society in a short and concise way. I immediately could see how life on the ward was equally full of diversity and contrast but also a sense of connectivity and comradeship. We were all in the same boat even though our journeys are varied.
I started writing and didn’t stop for about three days. I found myself documenting as much of Ellies journey as I could straight away because I knew I could not process what was happening to her – and subsequently to me and the family. It was too fast. There is no time to sit down in the evening with a cuppa and a biscuit and chat to your partner or friends about what a mad day you’ve had. No time to evaluate the decisions being made or what the consequences might be.
‘I see every contributor and know the story behind their journeys- they are very real for me.’
I had to document it all so I could revisit it when the dust had settled and go through it all and process it properly in my own head. I felt such a need to express all the elements of life as a parent of a child with cancer. I started asking for contributors via social media and on-line and piecing it together in my head Then Ellie had her Bone Marrow transplant and my attention was diverted from the project for a few months. I was kindly offered help from the editors of Coronation Street. They also helped me get the rights to use the music too. When I watch it back, I see every contributor and know the story behind their journeys- they are very real for me.
I’ve had comments left from other parents showing pictures of their kids going through treatment in other hospitals as well not just Ward 84. They can relate to the sense of unity brought on by their situations – a sense of togetherness – united behind a common cause – the fight against this terrible disease. They find it helps give them strength. When your child is diagnosed and starts treatment, you are instantly thrown into a situation and an environment that is completely alien to normal life. It’s a very isolating experience. When parents feel that they are not alone and that others are going through similar situations it brings a feeling of strength and empowerment that can enable you as a parent to better support your own needs as well as the needs of your child, their siblings and your partner.
Sadly some of the children in the poem have passed away so it is really important to me that I can use my poem in a way that will help to bring hope to families going through their journeys, highlight and raise awareness of life as a parent of a cancer kid and work towards kinder treatments and ultimately a cure for such a harsh killer.
Don’t shy away from mentioning childhood cancer or asking how your friend/relative/colleague/pupil is. Your support is vital. Take a peek into our world and see for yourself what we are seeing. It’s part of our lives and so are you. Don’t stand on the sidelines. Get involved. Help to bring your friend/relative/colleague/pupil’s sense of normal life back into their life. Help them to feel less isolated.
“I’m community spirit,
I’ll cloak you with comfort.
I’ll carry you along.”
Kate, Ellie’s mum.