When we first arrived in Bristol, we were placed on a medical ward, used to dealing with all sorts of ailments. Once we received Poppy’s diagnosis, we were moved upstairs to the Oncology floor. Initially to the Adolescent Ward (35) and eventually to our room on the Children’s Ward (34). The difference in the surroundings upstairs was remarkable. Heartbreaking and inspiring all at the same time, these wards cater to long term young patients and the quality of the setting is astounding. The snug, lounge and atrium for the teenagers more familiar in a youth club than a hospital.
I was really nervous about moving over to the children’s ward. In part, because in the two short days we spent with them, the care from Ward 35 was incredible. I will always credit the 3 unbelievable nurses there with helping me to come to terms with Poppy’s diagnosis. They listened to me blurt out my feelings over tea and tears for several hours in the middle of each night, when everything always seems at it’s worst. As the sun rose each day, I felt lighter and uplifted and able to go on. My brave face was firmly back in place for Poppy and it didn’t slip until the next night when she was fast asleep and once again, oblivious to any of my distress.
My other worry about moving wards was the small matter of no longer feeling slightly disconnected from our new reality. Once on the children’s ward, we would be surrounded by other young families facing this. We would be entering the world of childhood Leukaemia and there would be no going back. I was terrified of bumping into a child at a further stage of treatment than Poppy. A small, sickly child with no hair and hollow eyes.
As it happened, I needn’t have worried. As the doors opened on Ward 34, we were greeted with a warm welcome of friendly faces and space themed surroundings. The first child I saw was in the playroom, her gentle tufts of hair and feeding tube barely visible beneath the huge smile she wore whilst playing happily.
The children behaved like any children their age – weighing each other up with suspicious stares and shy smiles before engaging in whatever activity they chose. The parents however, surprised me. The nurses on ward 35 had spoken of the great friendships we’d develop, similar to that feeling of togetherness you have when you begin university or become a new parent. But it was the adults, not the children who had the sad faces and the hollow eyes. I realised in that moment that just like us, the other parents were shouldering the enormity of the situation, not the children.
I had thought we might be able to help each other in some way – safety in numbers and a shared understanding of what this journey entails. But actually upon seeing other parents in the shared kitchen, I realised that without the children there, this was everyone’s moment to let their masks slip and their true feelings show. The fear in some of their eyes made me frightened too, of what might be to come. But although, we were on the same ward, there were many different diagnoses there, all at separate stages of treatment so comparison to our cause was meaningless.
Still, I found I couldn’t fully connect with their sadness. It was too close to home, too suffocating, too all consuming for that particular moment when we were still coming to terms with our own words and sense of direction. When I briefly took respite from our 4 shared walls, I needed to step back a little and gain some breathing space. The brief, head down acknowledgement of the other parents began to make sense. We were all in this together, but we weren’t ready to accept or discuss it.
Talking has really helped me. But it’s the listening that matters, not the words said back. Sharing our story with another parent would mean hearing their version too and at the moment, I don’t have any more space in my head for anything but this. I used to read the news everyday, but I haven’t opened that app in weeks. There simply isn’t room in my brain for any more information.
I think the shared feeling of togetherness may come later in this journey. So much has happened, that it’s actually easy to forget that we’re only 4 weeks in to this crazy, new adventure. For now, we’ll be writing our own story and though we’ll inevitably be linked and spoken about in the same breath, there is room on the bookshelf for another book and in time, we may even read them together x