Naomi Shefford-Thomas is CCLG’s Information Executive and mum to Phoebe, who was diagnosed with neuroblastoma in 2016. She tells us how invaluable online support from other parents helped her navigate her daughter’s treatment and offers advice to others looking to find the same.
Everyone is different. Some people wear their heart on their sleeve, others find it very difficult to express how they are feeling. Some people are more private than others. There’s no right or wrong. I can only speak from my own experience.
We were 12 months into my daughter’s treatment by the time I looked online for peer support. Maybe this was because Facebook groups were less common back then, but it was through reading Contact magazine that I became aware of groups of parents and carers who were going through the same experiences, facing the same trauma and challenges, and most likely sat by their child’s hospital bed at that very moment, just like me, and I found that very comforting.
We were just about to embark on a new direction in treatment and I found others who’d had that same treatment. While I realised that every child’s response was different, it was reassuring to speak to others, to prepare for potential side effects and share tips. Finding out about and connecting with parents at a new hospital that we were going to was also very useful. Even now, after treatment, I find peer support important.
Finding support doesn’t just mean sharing your child’s situation. Just ‘being in the room’ with others who you know have been there themselves is reassuring. A safe place to talk about life in hospital, returning to school or work, to ‘scream’ or to share those small triumphs or those huge annoyances that the rest of the world wouldn’t understand, can help you through the day.
There are several groups and forums for parents of children with cancer including CCLG’s own Parents and Carers group, where you’ll not only find support from your peers, but a space to ask general queries of the experts. Other groups include Young Lives vs Cancer’s parents and carers group, ‘My kid has cancer’, as well as ones relating to your child’s specific type of cancer or treatment. You may also find groups set up for your ward, hospital or region, or charities that you may be aware of or involved with. It’s important to check how a group is run and what the rules are and decide whether that suits you. Rules and moderation are there to both help and protect all members.
"Having a child with cancer is very lonely and isolating. Nobody truly understands what you’re going through unless they are going through it, or have been through it too. Speaking to other parents online has helped us to feel less alone, and has often given us hope when times have felt very uncertain."
Jemma, mum to Freddie, who was diagnosed with a germ cell tumour aged two
Sometimes sensitive and traumatic experiences are shared, and you need to protect yourself. If you are spending more time than usual online and are finding that it’s adding to anxieties, then take a break for a while. Try talking to someone from your child’s team who knows your situation in detail and if you are struggling, see your own doctor.
It's really important to try not to compare your child’s experience and response to others and sometimes this can be difficult. It’s also important not to replace getting medical advice from your own team by searching for advice online. Always check back with your team, especially if your child’s unwell, as it’s always best to get them checked out.
I’ve made friends and found help and support and been able to provide the same for others in these online spaces. The support from other parents and carers is like no other on this journey. It can feel very isolating and overwhelming at every step and finding people who can identify with you, who just get ‘it’, is invaluable.
From Contact magazine issue 97 - Winter 2022
