I’ve been meaning to post an update for a while now, but various other things have been keeping me busy in the evenings when I would usually find some time to write. Now that my Christmas to do list is seemingly under control, I’ve found myself a moment to recount recent weeks.
I wrote most of this back in December, after Poppy’s latest lumbar puncture. With another one taking place last week, I’m reminded that I left this unpublished, so here it is to express our ongoing gratitude to the NHS and some of the special people we have met as a result of our experience…
I’m aware that my posts of late have focused on myself and how I’m feeling. I’ve needed a way to muddle through and come to terms with those feelings and writing them down has really helped, as has speaking them aloud to the various people who have asked. I’m also aware that you may well be wondering how Poppy is getting on as an update on her progress is long overdue.
I wrote this post some time ago in mid September, but left it unpublished. I think it’s an important part of our transition from Delayed Intensification to Maintenance, so hopefully it’ll fill a few gaps and explain a little bit more about the Maintenance phase involves. Please note that I’ve left this post in the present tense it was originally written in so Poppy is not currently in hospital as you may think when reading it, but rather playing happily at her grandparents house with Daisy! x
A deep breath. Seems a good place to start. I thought I’d left September and the seemingly endless wobble behind me, but October brought another unsteady path to tread. My last post spoke about feeling brighter, and that was my absolute truth in that moment but unfortunately that renewed sense of self only lasted a few days before the despair returned. The positive persona that people tell me inspires them seemed to have left the building and no matter what I did, I couldn’t scrape it together again. I didn’t even really feel sad, I felt numb. Completely devoid of feeling, all the usual tactics which would help me stand tall again after a slump weren’t working and I couldn’t find my happy.
I’m pleased to say that I’ve been feeling a lot brighter since my last post. September was hard for lots of reasons, many of which I didn’t go in to at the time but now feel able to explain a little bit more about. It’s important to note them here to remind myself if it happens again, but I also hope it might help others in a similar situation realise they are not alone.
I’ve found September really hard. Too hard to talk or write about, which is why it’s been near on a month since my last post. I have tried to write but haven’t been able to find the words to articulate my feelings or express myself in this constantly changing, swirling world of emotions and treatment and cancer. Six months in and there are times when I’m transported right back to the beginning again. To those confusing, fearful few weeks spent in the bubble of Bristol Children’s Hospital. I look back and wonder how we survived it. How we kept breathing and putting one foot in front of the other, all the while protecting Poppy and Daisy the very best we could.
It’s after midnight and I should definitely be in bed, but after reading other stories of childhood cancer tonight, I’m compelled to write instead. September is Childhood Cancer Awareness Month and there are stories of it everywhere I turn. Stories which make my heart ache. Stories which make my chest tighten. Stories I never thought our family would have anything in common with.
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.
Poppy bounced back from her course of steroids last Friday and woke up full of energy, so it was a good opportunity for us all to get out of the house for a wander around the trees at Westonbirt Arboretum. Not quite the calming experience it usually is, as Graham forgot his annual pass and we were greeted by an unforgiving member of the welcome team. I know we slipped up by forgetting the pass, but I’d like to see a little bit of trust involved and a back up plan for when genuine people make mistakes. It was a frosty start, which we managed to shake off without causing a scene. I came very close to mentioning that it was Poppy’s first proper day with her family after spending 3/7 days in the hospital and the rest lying on the sofa crushed by the muscle wasting effects of steroids, but there are some days when we just don’t want to get into the whole thing and it’s better dealt with by a shrug of the shoulders and a roll of the eyes between ourselves.