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.
Going away a few weeks ago gave us confidence, and whilst we’re not planning a trip to Disneyland just yet, it would certainly be nice to take some further breaks in the UK when we can. Poppy will enter a new phase of treatment in late July, titled Delayed Intensification. As the name suggests, things will step up a gear again with a range of drugs used in the early days of treatment, along with three new drugs which Poppy has never had before. We don’t know what those seven weeks and beyond will bring, so we’re trying to keep our minds and our diaries clear. That means trying to make the most of the next few weeks together, before the walls of the hospital become our mainstay once more.
At the moment, Poppy is improving all the time and regaining her mobility is a huge part of that. There’s still a way to go in terms of her stance and stamina, but she’s gone such a long way in such a short space of time. Looking back at the photographs this week, it’s hard to believe the transformation Poppy has undergone in just three months. Walking back to preschool this week, I was confronted with the notion that our last visit had been the day her illness presented itself. At the time, as it was my first opportunity to volunteer at Forest School, I thought her pleading to be carried was an emotional response to me being there to help, but as we now know, her tiredness that day was the first indication of Leukaemia.
Poppy is very tired again this week. I’m sure spending long days in the heat, albeit well-covered in the shade, have taken their toll and there have been sleepy lie-ins until 10am alongside daily afternoon naps. Flushed cheeks trigger a warning sign of a raised temperature, but of course it’s natural to feel flushed in this weather and it’s hard to remember that sometimes. On our way out to a local National Trust food festival on Saturday morning, Poppy told us her tummy was sore and asked for some water to settle it. After initially dismissing her sick feeling as “just a yawn”, she proceeded to vomit. More distressed by it being on her leg and her clothes, once cleaned up, she felt immediately better and we continued with our day after a change of clothes. We carry at least two sets with us now, in case of such occasions and have learnt the hard way that the best way to remove the smell of sick from the car is a little water and bicarbonate of soda (thanks for the tip mum!) Seeing Poppy in distress is really sad, and we desperately wish we could take any discomfort away from her. It’s those moments when the day can come crashing down from a high to a low. One positive is that we’re unlikely to dwell now, there’s no room for regrets or hard feelings, we just dust ourselves off and get back up again. Poppy’s car anthem of choice is still the “Poppy song” from Trolls (“Get Back Up Again”) I still love it too and am reminded of that glorious run which cleared the cobwebs all those weeks ago.
Exercise has been one of my saviours lately, and certainly one of my coping strategies. It’s hard to carve out time for yourself with young children anyway, even without the cancer diagnosis, and I’ve found the only way to stick to it is to mark it clearly in my diary in the same way I’d schedule a dentist appointment or a trip to the doctors. Group exercise has also been good for me, and I rarely run on my own now, favouring the company and laughter from my fellow Runner Beans over a solo run. Often I’ll talk about Poppy or something funny that Daisy has done, so it’s not an escape as much as a chance to recharge. I’ve re-joined my Friday exercise class too, and am halfway through this course, having only made two weeks of the first course. I joined at what became an eventful time, as I handed in my notice to my employer before the first class, got a new job by the second Friday, and was in hospital with Poppy by the third week. The class leader has been immensely supportive, returning my pre-paid money for the first course in a hand delivered card and promising me a place on any fully-booked course as soon as I felt ready to return. Hearing about Poppy really does bring out the best in people, and I continue to be amazed daily by the kindness being shown to us, in big ways and small.
Tears prick my eyes most days, though it’s rare that I cry properly. It’s hard to explain how close I carry Poppy’s cancer and it’s truly never far away. Physically, it actually feels like I am carrying it in a heavy pocket above my heart. I know that sounds really dramatic, but it’s the best way I can describe the feeling at the moment. I’m tempted to count the number of times Leukaemia crosses my mind daily, but I’d run out of fingers very quickly and am pretty sure I’d lose count long before the end of the day. The feeling is there all the time, and whilst there are obviously lots and lots of happy moments, which diminish the size of what I’m carrying, it still remains there in that pocket, waiting to be unleashed at a moment’s notice.
Things can change so quickly, and Poppy being seemingly well can quickly deteriorate as cancer rears itself once more. There are reminders everywhere. A man in a Macmillan cancer t-shirt. A reusable coffee cup bearing the name of another cancer charity. A collection tin for Cancer Research UK. Would I have noticed these things before? I’m sure I would have on some subconscious level but not to the extent that I do now. Seeing them I’m often gripped by the feeling that I want to know more. Why that t-shirt, that coffee cup, that tin? What’s their story of cancer? Sadly, far too many people have their own one to tell.
A million miles from the feeling I had at the very beginning, when I couldn’t contemplate hearing anyone else’s story, I now feel that I want to listen and give hope if I can. I’ve joined a support group for parents and carers being supported by CLIC Sargent and have commented on several posts of despair from other parents looking for help. Often the people reaching out are in the early stages of treatment, typically within the first 4 weeks when treatment is at it’s most intensive and the world seems the most bleak. My advice is always the same: try to keep your thoughts day by day and think small steps at a time. Find the love and strength you need to see you through, and learn from your own experience which coping strategies you need to rely on.
I’m always at my most overwhelmed when I try to think too far ahead. I have so many questions about the future. They brew in my mind and I mull them over in my head, but I know if I ask them out loud, the answer will be that there is no way of telling. Each illness, each story, each child is different, in their response, their abilities and their future. All we can do is keep taking each day at it comes, celebrating the steps we’re all taking and making sure that pocket full of cancer is also filled with hope, laughter and lots and lots of love x