Claire Farish’s son, Max, was 11 years old when diagnosed with cancer in May 2021. She explains how her family initially felt isolated after his diagnosis, but eventually found hope, support and understanding after reaching out.
Max was only a week away from his 12th birthday when he was finally diagnosed with a rare but large metastatic malignant tumour behind his nose. The diagnosis came as a huge shock to us, as any family that ever receives the news that their child has cancer will tell you. Alongside the shock and devastation, however, was an odd sense of relief. We’d known that something wasn’t right, and it had been parental instinct that pushed us to be persistent and tenacious in our pursuit to find out what was wrong.
To begin with, finding families in the same situation to share our experiences with was hard, especially during the pandemic. Social distancing had become the norm, and the fears of families with such vulnerable children were heightened. Hospitals were on high alert, family rooms closed, only one parent was allowed to accompany children on the wards – which all contributed greatly to feelings of anxiety and isolation.
It was a friend of a friend who put me in contact with Rachael at the Childhood Cancer Parents Alliance (CCPA), who called one afternoon and we chatted for ages, which happens a lot when we speak. That conversation was the first time I’d actually spoken to someone who could properly empathise with us, someone who knew exactly how we felt. Talking to someone who has gone through and survived the horror that we were living was comforting. We have an enormous amount of invaluable support from our families and friends that we are so grateful for, but this conversation and the subsequent support was different.
Since that first conversation, we’ve been welcomed wholeheartedly into the CCPA family. The charity’s unique vision is underpinned by the support they provide for the whole family, not just the affected child. Siblings are considered in the same way as their brother or sister and cared for equally. This is so important, given the feelings of trauma, confusion and anxiety, even guilt, they can often go through themselves.
Max’s 10-year-old brother Zak has embraced the opportunities that have been provided through the CCPA. His particular favourite has been online crafting sessions, and he’s looking forward to more face-to-face opportunities in the future. Both of the boys have enjoyed fundraising and volunteering for the charity and have benefited when we’ve received packages or left with armfuls of goodies from the shop.
For me, the sense of community, the belonging and acceptance, has been wonderful. I’ve enjoyed online crafting sessions, journaling courses, quiz nights and been made to feel incredibly welcome at all of them. Often, we enjoy light-hearted chat and simply compare notes about the usual day-to-day of family life. But there’s an understanding that, if you need advice, to let off steam, to vent or simply to emotionally unload, there’s a group of people who know exactly how you’re feeling, know what to say and have no expectations of you.
Talking to someone who has gone through and survived the horror that we were living was comforting. We have an enormous amount of invaluable support from our families and friends that we are so grateful for, but this conversation and the subsequent support was different.
As a parent of a child with cancer, you’re often told you’re amazing, but there really is no choice, you just have to get on with it. But it’s with the support of charities like the CCPA and the families you meet along the way that help you through and be there for those who are the really amazing ones, our children.
From Contact magazine issue 97 - Winter 2022
