They say the first 6 – 9 months are the hardest. By ‘they’, I mean the medical professionals around us and the other parents I’ve spoken to who are facing the same diagnosis with their own child. I held on to the first part of that dearly throughout those early months and was so surprised when at 6 months in, nothing at all seemed easier. Without realising it beforehand, I had expected that everything would suddenly and magically seem okay with the passing of those first intensive months of treatment. How laughable that seems now! But I now know how closely I was holding onto hope. I had to believe that we would find a way through this, and that things could and would get easier to bear one day.
It seems we are beginning to find those days. Not through anything magical, but through the passing of time and the adaptions and belief that have come along with that. I’ve started to imagine a future without being so afraid of what it might bring. The new year is stretching out in front of us, waiting for the next chapter to be told. Like most years, it’s full of hope and possibility.
Along with the photo books we gave the girls for Christmas, we also made calendars for close relatives containing our best memories from 2018. Each month corresponded with the same month last year, creating a journey which started with a tiny toddler and a little baby laughing and cuddling, and made it’s way through Poppy’s diagnosis, our subsequent stay in Bristol, the steroids and chemotherapy all whilst still smiling. Of course, there aren’t photo’s of the not so good days, and there were plenty of them. It wasn’t supposed to edit out the tough days, but to highlight how many highlights there were in a year we never could have expected. I’m so proud of the year we managed to have – of the joy we still found amongst everything that came our way.
As January comes round again, I can’t help but think back to last year and how we had no idea where the next few months would take us. At this time last year, I was pondering my return to work after maternity leave, preparing for Poppy to start pre-school and for Daisy to spend some time with her grandparents. Their birthdays were around the corner and we took a holiday to celebrate some time together before some big changes ahead. Not knowing at that point, that those big changes were not what we expected them to be! We still don’t know what this year will bring us, but then nor does anyone else either. An even footing after so long out of kilter.
The first parent that I spoke to properly on the Emily Kent Unit has a little boy who is a year ahead of us in treatment. He was six months into maintenance at the time and I clearly remember his dad saying that it doesn’t really ever get easier, but it does feel different. At the time, I was really shocked. Not only to hear that it wasn’t particularly easier, but also that he hadn’t tried to pretend that it was. Outside of the hospital, people are quick to placate any fears we might have, whereas those more closely associated with childhood cancer are brutally honest. And gladly so – hope is magical, but false hope is not.
I think what I’m trying to say is that we’re finally finding our feet again. Functioning again in a way that I’ve been trying to for months without success. We don’t always get it right and each day is different, but it does feel that things are tipping in our favour again. Does it feel easier? Not really. I’d certainly agree with the parent I mentioned earlier on that. I couldn’t imagine it at the time, and assumed they must have had a particularly rough ride but now I see what he meant. I’m not sure it will ever feel easier. But it does feel different. I feel different. Not so much getting over it, but learning to live with it. A new wave of acceptance. I’ve entered the new year feeling calmer and more relaxed than I have in a long time. Another thing I’m getting better at is relaxing! Actually switching off. Scoff if you will, but for months I have found this really difficult. Either not knowing what to do, or feeling immensely guilty for taking time to do anything for or by myself. I feel as if I’m reconnecting with things at the moment, one of which is learning to love reading again. I finished my first book of the year just a few days in and am already excited to find another to replace it.
I attended a session at Maggie’s, Cheltenham in December along with some other parents from the Emily Kent Unit. It was about managing stress and it helped immensely. I had not just one, but several lightbulb moments. I had no idea of the amount of things which can be affected by stress and suddenly the last few months made a lot more sense. That in itself helped – that feeling of togetherness gained from a problem shared. I’d already found some of the recommended coping strategies but it was this moment of realisation which made the biggest difference to me. That having a child with a serious illness is hard and stressful in so many different ways. On top of the usual stresses of everyday life. And we’re still here. Still coping, still breathing, still finding joy.
As the calendar rolls on, we’re not having a new beginning or a fresh start, but rather carrying on where 2018 left us…not as broken as we might have thought, but on the mend. Happy new year everyone, may it see you all in good health and everyday happiness x