Are we okay?

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.

One thing I haven’t yet mentioned here is that Graham is between jobs at the moment; the short story being that a change of training dates meant that a job opportunity didn’t fit around our lifestyle as expected. This meant that throughout January and February, with neither of us working (bar a few nursing bank shifts which Graham was able to take on) we have not had a steady income. A thought that previously would have scared us silly, but was actually first met with a shrug of the shoulders and a “worse things have happened” attitude. We could really have done without the anxiety and stress this began to subconsciously impose on our household though. I experienced several panic attacks throughout January and into February. The attacks themselves were short, but the tension they created remained for long periods afterwards. I wasn’t sleeping well and felt on edge at night, muscles tensed as if ready for some sort of unexplained action. I’ve since read up on this and also been advised by a friend that this is your body reacting in “fight or flight” mode – her great advice was to run off the adrenaline when needed, so imagine my joy at taking this advice and chancing upon the very same friend en route in her car! A serendipitous meeting which tickled me for days to come and made me feel the universe is on our side after all.

A new job awaits for Graham next week and we are both looking forward to the rhythm and routine that 2019 has so far been lacking in. We started the year determined to flip this unexpected turn of events into another adventure. Eating out morphed into picnics, getting around the changeable weather by sometimes picnicking on a rug in our living room and on one occasion, a car picnic, which was met with much delight from the girls. Our budget for recent months provided a source of comedy, in that looking back at the last three months for reference, I greeted each final amount with “well, that was an unusual month because…” It seems we only have unusual months now! There is no normal or usual anymore. Petrol rockets when we are back and forth to the hospital, as do our food costs – both from the food wasted at home, and the extortionate prices in the hospital itself. There’s also extra washing, extra heating, extra treats to appease the gloom. The cheapest option isn’t always the easiest anymore, and often we pay extra for the convenience this brings to our lives.

Many people have begun asking me if I’ll be returning to work, but I can’t really imagine it at the moment. That of course brings it’s own helping of guilt, at not being able to contribute to our household in the same way as usual, heaping extra pressure on Graham, but we both agree that it doesn’t seem feasible or practical at the moment. It has been on my mind as a possibility, which is a step forward but I can’t imagine finding an opportunity that also means I can look after both girls and attend to Poppy’s needs during the times when round the clock care is required. A thought to be postponed until later in the year, when (if?) we regain any control or predictability to our lives.

Sometimes I feel trapped by our circumstances. I get this overwhelming feeling of wanting to pack our bags and run away…to travel the world together and visit the many places we talk about each night on Poppy’s globe. Of course, with Poppy starting school on the horizon, it’s unlikely that we would have chosen this year and this time to travel the world, but somehow the fact that we can’t makes me feel as though my wings have been clipped. The choice being taken away from us, whether we wanted to or not. The lack of choice and the lack of control. Are we okay? I don’t really know how to answer that. There’s a knot in my stomach and I’ve cried a lot in recent days, but as my last post explained that’s standard fare for the days before the monthly steroids begin. Our new normal as such. Poppy’s been on good form this week after a very tired weekend. Her energy levels have been up and she’s been very chatty. It’s so good to see her on the up, but as with any roller coaster, we know that there will be dips to come. We have a hospital day tomorrow for Chemo and a monthly review, before the steroids take over another weekend.

I still struggle to answer the frequent question of “How is Poppy doing?” In terms of her bravery, her acceptance, her ability to take her medicine without complaint every single night – sometimes a cocktail of 4 or 5 different sorts – Poppy is doing exceptionally well. In terms of her illness, reaching milestones and pressing on with her treatment, Poppy is also doing exceptionally well. For someone with Leukaemia, Poppy is doing exceptionally well. But she does have a very serious illness. There is not getting away from that, even though her smile might fool you otherwise. She regularly faces pain, whether through the muscle-wasting effects of the steroids, the after effects of chemotherapy or the many trips and falls she experiences with her self-titled “bendy leg”. A leg that is still recovering from the toll that almost a year of treatment is taking on her body and learning to move again, Poppy’s bendy leg frequently gives way beneath her leaving her knees constantly covered in bruises and grazes. Knees that I know would probably be covered in bruises at her age anyway, but ones that would tell a different story from the one we are writing.

I knew there would be good days and not so good days along this road. That was about the extent of my cancer knowledge actually, along with the loss of hair. What I didn’t realise was the overall impact on every aspect of our life. Our family, our social lives, our finances, our choices, our daily living…the list goes on. All routes lead to cancer. The most significant impact has been on our mental health, our ability to navigate this strange new world we’re inhabiting and that has come as a huge shock. The clinical care and support has been incredible, but there are huge gaps in the services helping families to cope with the brutality of caring for a child with a serious illness. There is some help available, and things are beginning to change, in the sense that it is being recognised as a great need, but these things aren’t always easy to access and it’s deeply sad to meet other parents in the hospital struggling to cope too. You might think that given our own experience we’d know exactly what to say to someone struggling else with this, but actually words continue to fail me. There are no right words. There are plenty that comfort, give hope and reassure us, but none that can take the pain away completely. I remain confident that it is always better to say something than nothing at all, even if that something is “I don’t know what to say.”

My post at the turn of the year spoke of hope, of acceptance and of learning to live with our new reality. Those things are all still true, but I naively thought that because those feelings had arrived, they would remain in the forefront of my mind, pushing anything else away and overwhelming them with their positivity. Those feelings were a moment, an important moment, but ones that need to be worked on to remain. The guide to self help continues and it’s not a case of having arrived and stowed the suitcases but unpacking and adapting to a new climate all the time. It’s a continuously moving journey that we’re on. Mixed emotions, grief and stress cloud my judgement and I’m learning that the feelings they impose can strike when you least expect it. Seemingly when things appear to be heading in the right direction. Or when you don’t feel as if you’re grieving or stressed. That’s actually how I feel most of the time. I’m not knowingly conscious of how stressed Poppy’s illness makes me, but the stress skulks in the shadows affecting almost every aspect of my day.

But then, it’s time to pick ourselves up again and get on with the important task of moving onwards. Because that’s the very best thing we can do. Each and every day is another step in the right direction x

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