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…
My last post was written on the eve of the next course of steroids. Poppy had recovered from a short spell in hospital with a chest infection and been released with a course of antibiotics for five days. A temperature spike usually means a minimum of 48 hours in hospital while the doctors wait for the results of her blood cultures to be returned from the lab. On this occasion, Poppy wasn’t neutropenic and the doctors were satisfied she could recover at home – the first time this has been allowed and seemingly one of the perks of being in long term maintenance.
Before being released, there was some concern about her chest rattling, so an x-ray was done which came back clear. As with many things Poppy does during her treatment, I watched in awe as she had her X-ray done. She has had one before in the days before her diagnosis, but I stood by her side then and nothing else was asked of her except to stand still and face forward. Even then, the experience was intimidating. A new room with new people, large clunky machines, and bright lights alongside the sense of not knowing exactly what was going to happen next.
This time, Poppy was asked to remove her outer layer of clothing, press her chest against the screen, hold on to the sides and look upwards. I then had to go behind the glass screen at the other end of the room with our accompanying nurse for several long minutes while the images were taken. I didn’t realise this was going to happen and didn’t have time to prepare Poppy so I kept talking to her as best as I could to reassure her I was still there. I could see on her face she was absolutely terrified, and she called out for me in fear, but she remained in position and did exactly as she was told. It took all my own mental strength not to run to her and I was already in motion when I heard the words “all done”! When we talk about bravery, I think we think of the aftermath; the outcome of whatever event may have taken place. I’m not sure I would automatically associate it with fear, at least not in the first instance. I have however seen firsthand with Poppy that being brave isn’t about being fearless at all. It’s being scared, sometimes terrified, but knowing it needs to be done and finding a way to get through it anyway. Needless to say, we are exceptionally proud of every mountain she climbs on this adventure we wish she didn’t have to face.
With that mountain safely maneuvered, steroids were now on the horizon. My stomach drops the day before steroids. Twisting itself into knots as I try to prepare myself for what is to come. I’m not sure I’ll ever be able to fully explain how awful the steroids can be. It’s simply unbelievable how quickly they take hold of Poppy. Seeing is believing and it’s only a few people who have seen Poppy in the grips of them. Even then, it’s for maybe an hour, whereas I rarely leave her side for five full days. I am on edge the entire time and we are all exhausted by the end of the course.
I thought we were beginning to cope with steroids better as the last few occasions haven’t hit as hard as expected. As much as we all try to keep a handle on things, we’re not really in as much control as we’d like. Out of nowhere, the first dose of steroids depleted Poppy beyond recognition and we hunkered down and hibernated as the effects worsened across the weekend. We rarely make plans for those five days, but sometimes we don’t even leave the safety of our home and this was one of those occasions. Sometimes I can’t even recall how we have made it through, only to know that the lungfuls of fresh air we breath when we finally resurface are very welcome.
So how do we cope? As I mentioned, we rarely make plans. We used to stock the kitchen with all manner of foods, ready for any plausible request or craving Poppy might experience. This quickly became impossible to predict and we were either throwing away fresh food or taking up valuable space in the freezer with strange items. So now we tend to let stocks run low and go with the flow of how Poppy is feeling. If she is up to it, we’ll go to the supermarket together and choose the recipes she fancies. Maybe do an online order for groceries to be delivered. More often than not now, the oral chemotherapy Poppy takes daily during maintenance suppresses her appetite which balances out the hungry feeling the steroids create and means we’re trying to tempt her to eat rather than convincing her not to. She will often go to bed without dinner at this time, simply because she is too exhausted to contemplate the effort of eating.
We spend the first few days spending time together, but gradually disperse as the course goes on and the cumulative effects take hold. Daisy will often go for a day out with daddy and then spend the final two days with grandparents, as Poppy’s complex needs are often too great by that point to feel that we can give Daisy the attention she deserves too. It took me a long time to settle the guilt I felt every month at shipping Daisy off to her grandparents, but last month it finally dawned on me that her role in steroids week is the most normal part of all this. Think of it this way…without cancer, Poppy would have been going to preschool more frequently, Graham would be working full-time and I would almost certainly have been working part-time so Daisy going to her grandparents would have been nothing out of the ordinary. Other than these few things, the only coping mechanism we have is to live moment by moment. Hour by hour. It sounds dramatic, but for those few days we think of nothing more than getting through each day as best as we can. We know that for those five days every month (which is really more of a week by the time the effects have worn off) life is very different for us.
Just like the knotted stomach I experience on the day before steroids, I always feel terrible the day after too. It’s sort of a sense of relief at having survived them, but also sorrow for what we are having to face as a family. I found that feeling hard to shake this time and have spent the interim time since my last post lost in a wave of self doubt, not really knowing where my life is headed. It can often feel like we have just landed in this life with no way of knowing how we got here or where to go next. We may as well be living on another planet for one week out of every four. Our lives feel so far removed from anything ordinary and re-entering normality the week after can sometimes feel very strange. People see Poppy with hair, dancing about and assume all is well. That may be true of that day or even that moment, but when we are out and about, that is a good day. The not so good days are spent tucked away, hiding away from the world that we don’t know how to associate with.
At the moment, we’re on a run of good days. No doubt helped along by this glorious wave of warm sunshine we’re experiencing. Poppy’s recovered from another spell in hospital – this time heading in on the evening of Daisy’s birthday, having thankfully celebrated together all weekend. Poppy was fading throughout the day and her temperature spiked just as we were sitting down to a Sunday roast. Some of you may know that this has happened before and on that occasion, we packed up our roast dinner and took it with us to the hospital. The only difference between those early days and now being that this time we ate the dinner first and then called the hospital to let them know we were coming in!
Every unexpected stay in hospital reminds us of what we are facing. how quickly things can change and how important it is to make the most of the rest of our time. We often book a holiday or a short break away in the wake of these stays. A bit like when a felled tree is replaced with a new sapling, we are making up for the lost family time spent apart in hospital by gathering up those moments which have been snatched from us and transporting them to a new destination a few weeks later. There is no greater reminder of what really matters x