It seems my last post has worried a few people. Murmurings of whether we’re okay and messages offering help or support have flooded in again. I’ve reread the post and perhaps I am becoming desensitised to all of this, but it seems no worse to me than any other. There’s no great reveal or change of circumstance, I suppose I’ve hinted at steroid anxiety before, but not known how to spell it out. Perhaps it’s given a better idea of what our day to day life is actually like. It’s still very hard to get that across, and whilst I try to be honest, there is so much more going on than I could ever write about. It’s an insight, but not our lives laid bare.
Oops, that was a bit of a disappearing act. I know that pride comes before a fall, but I didn’t realise that can happen with hope too…
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.
Knowing how busy this time of year can be and how quickly dates can fill up, back in November I’d earmarked several dates in my diary which I wanted to keep clear for potential days out or activities together. Carefully devised to avoid the mid-December course of steroids and allow Poppy some quiet time in between busy days, on paper it looked perfect.
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’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.