I like to write with a pen and paper. I scribble and rearrange on the page. In university I hand wrote my essay notes, mind maps, and arrows directed ideas. I didn’t feel the need to write back then, I enjoyed it, somewhat, but wasn’t drawn to writing like I am now. I’ve heard writing described as cathartic for people who’ve gone through trauma or are going through chaos. Maybe it allows time to rationalise a hive of thoughts, at least slow them for the seconds it takes to write a sentence. I don’t mean writing in terms of literature or academia. I mean letters, words, sentences—communication. Thoughts translated... and somewhat analysed. Cathartic? Yes, cathartic.
I like to write with a pen and paper. However any thoughts relating to my son end up typed into my phone. Millennialism? The digital age? Or a signifier or the time these thoughts find themselves as pixels. Late at night, the lights are out, I don’t even need to lift my head from my pillow to spill my heart. Perhaps it’s laziness, the convenience, or modern life sucking the romance out of even the oldest tradition. What I am writing is not romantic. So much of cancer is communicated electronically, it makes sense for my thoughts to follow.
I lean towards metaphors, like ‘trying to walk up a downwards escalator,’ but that is not what childhood cancer is. It is peaks and troughs; celebrating when a cycle of medication is over, crying when sports day has to be missed. I can’t quite piece together why missing sports day has me so upset. Perhaps I had placed a sign of normality on sports day. If my son can run, others can see how well he is, how cancer no longer has a hold over him. As Noah has progressed through treatment, the chain shackling him to cancer has lengthened longer and longer, allowing him freedoms (another metaphor). Don’t get ahead of yourselves, don’t get bold. That chain is still bolted, despite the illusion it was gone. The same day I bought a T-shirt in Noah’s team’s colours, I found out he would have a planned admission the next week and miss sports day. We’re both used to staying in the hospital, we have a suitcase packed and in the car at all times, we know the drill. So why am I upset at something that is pretty routine for us?
I ask a lot of questions, a lot of “maybes” and “perhapses,” I suppose and wonder a lot too. Even routine can be unpredictable. Throughout treatment we’re never quite certain where we stand. My poor brain doesn’t stand a chance of being certain of itself.
Noah has an infection in his central line, the infection is not yet in his blood stream. I don’t quite understand how that works, but I like to think it’s him keeping his illness at arms length, setting boundaries. It also means we can have daily hospital visits for antibiotics, not a 15 day stint in the hospital, as I am told would be the case. Noah will be admitted next week because his central line is infected it will need to come out—not a huge operation, not complicated or dangerous. Coming out is easier that going in, right? However, I can not shake an over hanging sense of dread. For the past four months, consultants and nurses have been discussing taking Noah’s line out and I have not been ready to agree. I needed to see how well he’d cope once he hit maintenance (the last stretch of treatment for leukemia that lasts a few years) and he has coped incredibly, it is everything I had hoped for him. He’s had hardly any hospital stays, he’s eating and sleeping. He’s started school again, it was a rocky start, but he is now settled and happy. The glimpses of happiness I saw smeared with medication and side effects a few months ago are now smack bang staring me in the face. My son is wholly here, present and correct. Which is probably why the thought of an uncomplicated operation has me biting me nails. I am afraid to see him set back. Six months of front line treatment was grueling. I can already feel my heart sinking, as I’m awake all night telling Noah not to pick his stitches. 'I know it hurts, I know they’re uncomfortable,' I’ll say to no avail. I know recovery should be quick, it really does not make sense as to why I am afraid. You are in fight mode during the worst phases, I don’t have stress hormones on my side this time.
The last operation Noah had to readjust his line saw him in NICU, perhaps that’s the explanation, or part of it. I suppose one’s emotions during cancer are aloud to not be rational. Cancer itself is not rational. You do learn to expect the unexpected, your suitcase is packed and you’re prepared, but you’re also blindfolded whilst walking uneven terrain, the peaks and troughs catch you there, they can not be planned for.
For cancer parents who may be confused reading that he won’t have a central line for the rest of maintenance, Noah is part of the UKALL 2011 trail and doesn’t receive pulses as part of his treatment, so doesn’t need a line for vincristine.