In June 2024, we received the news that a tumour had been found in our son Barney’s left lung. This came just a few months after he’d been rushed to hospital with pneumonia. After a biopsy, it was confirmed that he had a bronchial mucoepidermoid carcinoma. The preferred treatment was surgery, and with it, came huge risks. A week after the results, he went into surgery to remove his lung. This ensured all the cancerous cells were removed, to reduce the chance of the cancer returning. The majority of Barney’s journey was spent at home. I’d take him to and from hospitals for appointments, tests and scans. With no family nearby and his dad, Phil, working in London, a huge amount of planning would go into each appointment to ensure someone was always at home for our youngest, Freddie. Phil and I are both self-employed and if we weren’t working, we weren’t earning. Work and home life had to carry on around our new world of childhood cancer.
Five days after his surgery, Barney was discharged from hospital and told that it would be “life as normal”. We Phil, Barney, Phoebe and Freddie were now in charge of nursing him back to his new life. I was terrified and completely overwhelmed. He was weak, recovering from major surgery. We started to create a new life built on what we felt comfortable with. We just had to guide ourselves through it, which came with its own scary baggage.
Finding the right support
From February 2024, when Barney was first taken to the hospital with suspected pneumonia, our family life changed overnight. Barney and Freddie had never spent a night apart before then. We effectively went into another lockdown. Barney was too weak and got too tired easily and couldn’t do much. We’d go out for a short time and then return home so he could rest. There was so much love and support when Barney went into surgery from friends and family, which we greatly appreciated and helped us so much. But when he was discharged, life carried on as normal for everyone else, while we were still in the thick of it. I felt so lonely and exhausted trying to keep everything going. I had no one to talk to who would understand. That is, until our support worker from Young Lives vs Cancer, Sarah, got in touch. Sarah was there when we were desperate for someone to talk to, someone who understood what we were going through as a family. She also pointed us in the direction of other charities that offered support and helped us when we couldn’t get hold of answers at the hospital. Sarah also helped with Barney’s gradual return to school, contacting them with information about childhood cancer and how they could support Barney. She’d listen when I was trying to figure things out in my mind and always checked in on us when he was due a scan or tests. I soon realised that, when crisis hits, I put my head down and go into strategy mode, pushing emotion to the back. This was how I coped but it's exhausting and, at some point, emotion will hit. I needed to add balance back into my life. I love running and had put this on the back burner. So, I started running a mile a day to get some structure back in my life, and I also started therapy. I couldn’t support my family if I didn’t look after myself.
What I’ve learned more than anything is that finding your support network is such a huge help and that's why you shouldn’t be afraid to reach out. People want to help but often don’t know how or what to say. As we continue our journey, I make sure I’m there for my family, especially Barney, who’s now 11. When he’s due a scan or appointment, I keep my diary clear so I can not only be present but give myself the headspace for the emotion that comes with it.
