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.
I don’t quite know where to start today…it’s been a while since I sat down to write, so I’ll start typing and see where we end up! The first week of Delayed Intensification has gone better than expected. By which I mean that my expectations of this phase of treatment were so low that anything above that was set to be a bonus.
So that was Interim Maintenance. A bumpy start with two unplanned hospital admissions smoothed out along the road with two holidays, a weekend away by the seaside, and numerous happy days spent together in the sunshine. We knew this would be our best opportunity to get out and about with the girls, and it’s safe to say we achieved our aim of making the absolute most of Poppy’s wellness. We even made it back for the final day of pre-school before the summer break – a trip to Forest school to make dens and shelters, before returning for a party filled with food, music, bubbles and dancing. Poppy transformed from her dusty forest school outfit into her sparkly party dress, receiving many compliments along the way. Watching on from the sidelines, I was moved to happy tears by Poppy’s dancing during musical statues. The wild abandon with which she closed her eyes, threw her arms in the air and wiggled her hips was such a moment of pure joy, given away by the huge grin on her face. Quite simply, dancing like nobody’s watching. A good friend was there to hug me as the tears fell, and as I said to her, it’s rarely when Poppy is poorly that I cry, but the moments like these when she is doing the things she should be doing at her age. Her dancing took my breath away and will play like a video in my mind for a long time to come.
Graham and I have just returned from our first night away on our own in almost four years! The last being a heavily pregnant visit to Harptree Court, where I waddled around the grounds and ate my breakfast eggs well-done. This time, Cowley Manor was our location of choice, booked on a last minute whim the night before. We almost didn’t do it, but decided it was our last opportunity to do so for a while and some thinking time on our own would be welcome after our late night heart to hearts of late. The relentless nature of the last few months has been catching up with us and we don’t always have a chance to process everything that is happening to our family. Our days are filled with love and laughter with the girls by our side, and by the time the evening rolls around, we’re often too exhausted to delve deep into our thoughts.
It’s 3.40am and I can’t sleep. So often I fall into bed exhausted and drift off within minutes, only to be wide awake each night at this time. Cancer is undoubtedly on my mind at this hour. My mind turns the same thoughts over and over, and it’s preferable to get up for an hour or two than to lie there with my darkest thoughts. I spoke last week of having nightmares but didn’t go into detail. When I’m afraid, it’s hard to speak the words out loud but often fear is better faced head on and I feel better for having voiced and acknowledged what I’m thinking. My nightmares always follow a similar theme – they’re never about cancer, but a struggle of some other sort. A fire or a drowning situation, in which I’m powerless to save the girls. I always wake mid-nightmare (usually screaming and gasping for breath), so never know the outcome of the scenario, but it doesn’t take a specialist in dreams to recognise the link between these nightmares, cancer and the lack of control/ability to rescue my loved ones. Another way for my mind to process the trauma; things inevitably always seem better in the morning.
I gave blood today. I re-registered the night Poppy was diagnosed and have been waiting patiently for my appointment ever since. Last time I gave blood, I had recently turned 18 and naively turned up by myself, but this time I brought a merry band of supporters with me. There were four of us donating (two close family friends, my mum and myself) and four in our support team too (Graham, Daisy, my dad and our guest of honour, Poppy) Driving to the hall, I felt quite emotional, but I managed to hold it together pretty well, until the nurse saw me gazing at Poppy and asked if it was the first time she had come with me. I lost it completely when I explained that we were all here because of her! I felt so proud seeing her watch on with my mum in front of me and our friends by our side.
Last week was a good news sort of week. Tuesday was a hospital theatre day, with Poppy in the sweetest of moods. We spent the morning giggling over a sand art picture, donated by Artisand UK after we came across them at the Cricklade Festival. It’s a great activity, using tubes of coloured sand to fill a pre-printed sticker picture. Poppy was totally absorbed in it, smiling and laughing as she carefully selected her sand colours and later declared it her favourite part of the day. It was the perfect length of time to occupy us both until the anaesthetic nurse arrived to escort us down to theatre. Poppy no longer needs the banana we used to sneak in afterwards, and now waits patiently until we return to the ward for her first meal of the day.
After the success of our holiday, we’d planned to spend a few days away at a friend’s holiday cottage in Wales last weekend. As it happened, we made a decision not to travel in the heat – Poppy and Daisy were none the wiser, as we hadn’t mentioned the trip away. Spontaneity works best for us at the moment, so plans are often made last minute. The girls were more than happy with their new paddling pool in the garden, without the travelling time and lack of shade on the beach to worry about.