September is Childhood Cancer Awareness Month. This year CLIC Sargent, a leading UK cancer charity for children and young people, is shining a light on the mental health and emotional impact for parents when their child is diagnosed with cancer. This guest post from Clare Laxton, CLIC Sargent’s Assistant Director of Policy and Influencing blogs, highlights how cancer can affect parents and carers and outlines what help the charity can provide.
It’s tough seeing your child go through cancer – the multiple trips to the hospital for treatment, the constant worry when their temperature spikes and what that might mean, the support needed by your other children – it all takes its toll on parents. That’s where CLIC Sargent comes in. We know how hard it is for families to go through childhood cancer, which is why, this Childhood Cancer Awareness Month, we’re raising awareness of the emotional impact on parents and how important it is they have someone to talk to about what they’re going through.
Our new data tells us the extent to which parents and carers of children and young people with cancer go through their own emotional and mental health issues. Of the parents we asked, we found 63% had experienced depression during their child’s treatment with more than a third experiencing panic attacks as well. The majority also experienced loneliness and talked about the strain of trying to support their family through the hugely difficult time.
With so much going on for parents you probably won’t be surprised that most of them don’t access support for their own emotional or mental health issues when their child is going through treatment. Where parents did access support they found services such as counselling, a CLIC Sargent social worker and talking to others with similar experiences helpful. We want to make sure that parents can get the support they need.
That’s why we are using Childhood Cancer Awareness Month, which runs throughout September, to raise awareness of this issue facing parents and carers and encouraging parents to start talking to help them through their child’s cancer treatment.
One dad who spoke to us about the emotional impact of childhood cancer on parents is Simon, whose daughter Hannah was diagnosed with the rare soft tissue cancer alveolar rhabdomyosarcoma when she was 11-years-old, and sadly died aged 13.
Simon said: “Hannah’s diagnosis was a complete shock, it hadn’t even crossed our minds it could be cancer. I still have a clear memory of the moment we were told. The doctor took myself and Hannah into a side room and told us the obstruction in her abdomen – that had been treated as constipation – was in fact a 10cm malignant tumour. With those few words, I knew immediately what they meant, my whole world fell apart.
“It was so hard watching her suffer the symptoms of the treatment, seeing her beautiful long blonde hair fall out in big clumps, watching her being sick and bed bound when she’d been so active before. The feeling of helplessness that you couldn’t do anything other than be there, you had no control over anything that was happening.
“Family and friends can both be a help but also a source of additional pain and anxiety. I know many parents who have lost family and friends as a result of a cancer diagnosis in their child. Often meaning well, particularly at the start but the support very often diminishes as time goes on. People’s lives carry on but yours seems to be on pause, stuck fast as the world goes on around you.
“When you’re going through this, your main focus is your ill child, it is all-consuming. It’s difficult to think about your own welfare, it hardly seems relevant in the circumstances but if you don’t look after yourself physically and emotionally then you won’t have the ability to be there for your ill child.
“When we lost Hannah the pain was, and still is, unbearable. That experience will stay with me forever, I still get flashbacks to it, the emotional pain takes my breath away. And we have to live with her loss every minute of every day while the world goes on around us. We have since found that child bereavement is such a taboo subject, no one wants to talk about it or think about it so often they just stay away for fear of saying or doing the wrong thing, which can make life very lonely.”
For many readers of Dad Blog UK, Simon’s story may be a familiar one. Parents who are supporting their child who is going through treatment for any illness or living with a long-term condition, or those that have lost a child may be feeling exactly what Simon is feeling and understand the stark reality that faces some parents every day. That’s why it’s so important to highlight the support that is out there for parents and carers.
By raising awareness of the issue and encouraging parents to start talking we hope that many parents will be able to access the support they need while their child is going through treatment. We have information and advice on our website, and we’ve even got a closed Facebook group for parents where they can discuss their experiences and give each other that vital support that they find so helpful. Any parent of a child with cancer can join here.
Join us in raising awareness of the hidden costs of childhood cancer. Please share this blog post on social media (@CLIC_Sargent) and encourage everyone you know to as well!
You can find out more about Childhood Cancer Awareness Month and see other organisations that can offer support for parents on our website.