Posts have been few and far between this month. I haven’t felt able to write anything, through lack of energy from long, draining days and an inability to articulate how I’m really feeling. To some extent, there have been times when I’ve thought about writing something but have hesitated because my thoughts are actually too awful to put into words. I’ve tried to be honest, but the reality is that there is a lot more going on than is presented here. Parts of this story aren’t always only mine to share and other times, when the awful is really awful, I don’t have the energy to capture it.
When times are tough, preserving energy is important for all of us to be able to face the next day ahead. We transition into survival mode, and achieve very little beyond caring for our basic needs. Even getting showered and dressed feels like an accomplishment, particularly for me, as it’s so difficult to leave Poppy’s side during steroids week that it may be early afternoon before an opportunity presents itself. Then when things are on the up again, I don’t necessarily wish to recount the not so good times so don’t always feel I’ve represented that in my writing. It’s all part of living in the moment and living day by day, that each memory needs to be recorded when it’s fresh and when we’re actually living it rather than days later when it’s been replaced with a different feeling. There’s not much I can do to change that, but thought it might help to explain what’s going on when there’s a longer than usual gap between posts.
August has loomed in our minds and diaries for several months now. We knew we would be seeing a lot more of the hospital walls during this time, but nothing has quite prepared us for being back in that all consuming state. It actually consumes me most of the time anyway, but during intensive periods, our lives are lived not just day by day but hour by hour. Thoughts, feelings and emotions all change rapidly as does Poppy’s health. We had an unexpected stay at the hospital last weekend when Poppy spiked a high temperature in the middle of the night. A 3am road trip to Gloucester and three days inside were cheered up by daily visitors bringing love, lights, balloons and in Daisy’s case, a cheeky smile, lots of giggles and a trail of crumbs.
We were released on Monday, just in time for a special cinema outing with the oncology unit support group, which encompasses families on active treatment and those who have recently finished too. During treatment, children are often at risk of infection so a trip to the cinema in an enclosed space with no control over who else is there is not the best idea. A private screening is the way to go, and in doing so, Poppy was given the opportunity for her first ever cinema experience. She was enthralled by Peter Rabbit, beaming and giggling at the mischievous bunnies as she tucked into the sandwiches we’d packed for the lunchtime showing. It was a delightful afternoon spent with Poppy and my mum, and a lovely opportunity to spend some quality time together.
Despite being very tired, Poppy was determined to end the treat day with a sleepover at her grandparents house, who were also housing her visiting uncle. Lots of crafts and cooking followed in the morning before the rest of us joined them for lunch. Poppy gave in to a nap after eating, which turned into almost three hours of sleep and a high temperature upon waking. Hoping it was a result of the heavy duvet she was snuggled in, we continued to get ready for the summer disco; another event in the oncology unit calendar which we had been discussing with much excitement for weeks. Poppy and Daisy were ready to party in their swishy dresses and sparkly trainers and after a slow start, Poppy was dancing the conga by the end of it! It was a fun evening filled with cheesy music, magic tricks, party food, dancing and balloon chasing. All in the company of other families who know exactly what we’re going through and exactly how much it means to see smiles on all of the children’s faces.
Poppy’s temperature stayed down, but tucking the girls into bed that night, we were all too conscious of how rapidly things can change, and I headed for an early night myself suspecting that we may end up back in the hospital before too long. That instinct was correct and at 1am, I checked in on Poppy to find her skin hot to touch and a quick temperature check with our thermometer confirmed we were back off for another sleepover at GRH. The journey there is always full of anticipation and a little heartache that we’re returning again. I still haven’t got used to being a parent of a child with cancer and the tilted head smiles which accompany our journey left onto the children’s oncology unit, rather than the main ward ahead. Still full of many unwelcome ailments, but none quite the same as the journey of childhood cancer that we’re on.
Protocol dictates that if Poppy is neutropenic, we have to stay for at least 48 hours to find out more about what may be causing her temperature. Time passes slowly in the hospital, broken up by meals and four-hourly observations. There is only so much entertainment available, and whilst there is an array of toys to play with and crafts to make, it can be a draining experience for us both to keep occupied without the freedom we’re afforded at home.
In contrast to the way there, the journey back home is one I relish. After spending days inside, the lungfuls of fresh air we breathe on the way out of hospital never fails to put a smile on both of our faces. Poppy is generally wheeled in to the children’s centre in her buggy, but on our way out, she’s usually able to walk and often dances her way to the car grinning as she does so. On our release, she’s full of the wonders of the world, pausing to ask questions and talking about what she can see and what she’d like to play with at home. Our chattering continues until Poppy usually falls asleep, leaving me alone with my own thoughts. Unlike the way there, when those thoughts are full of cancer and the sorrow I feel for my family and for my little girl, the way home is full of hope, of life, of endless possibilities. My thoughts turn to happiness, family, and the joy in all of the little things – a meal prepared and shared together, the laughter in being together again, and of course, our own beds for the night. Simple pleasures, all too easily taken for granted, but all the more appreciated when you’ve spent 5 of the last 7 nights in hospital. Tomorrow is a new day and I hope it’s one we can all enjoy together at home x