Sitting in a kind of seminar room with S in the Mustard Tree, tears materialise from outer space. I say that because I didn’t somehow have access to them from within myself, they kind of landed on me. Fear? Grief? I talk to S who is a counsellor about how I am, and about the looming treatment. I tell her about my needle fear; isn’t it odd that in descriptions, fear so often pricks, as do tears? One of those tiny things that is imprinted in my mind from the initial ambulance training course is that we never say the word prick when using a needle in case it’s taken the wrong way, whether for a blood glucose measurement or cannulation. We say sharp scratch. But sharp scratch doesn’t quite express what’s going on. I think of Sleeping Beauty pricking her finger, of the thorns that grew around her. A scratch is on the surface, it doesn’t pierce, break the boundary.
We talk generally about the treatment, and I explain how I deal with claustrophobia in my previously normal life, the life where I choose to swim into the cave and when the swell picks me up and pushes me to the roof I bob beneath the surface and swim through aquamarine, above constellations of starfish. I’m not pinioned by a mask staring at the geometry of the ceiling; that bright white chequerboard of tiles and lights boring down before being pushed into the machine that will irradiate a part of my brain, and I hope, tumourous Hunt’s Cheshire Cat smirk. A slight digression here; it was properly amusing to hear Dennis Skinner MP savaging Jeremy Hunt over his smirk when giving a statement over the Junior Doctors’ strike.
I’ve lost my focus in the past couple of weeks, scattered the rays across the political spectrum and spent too much time on social media. There’s that air of time disappearing, of desperation as more and more political nightmares vanish beneath the carpet and are replaced by others. The fear as the NHS crumbles and it’s blamed on the doctors. The thought that I’ll die and I won’t ever know what happens to it, that it’s lost forever. I can’t bear it. S talks about mindfulness, about moving back into the moment, not dwelling in the past, or in the future. The thing is, I don’t actually want to be here in this moment.
I’ve been trying also to tie up the mounting heap of admin I have, and the displacement of scattering political bullets over Twitter and Facebook has pretty much ensured I’ve not completed anything I meant to, including my tax return. Back to the days when Hunt grew in my brain, before I knew he was there, those days where I judged myself for that inability to complete tasks, or even get to grips with them at all. There’s also the advice given by a friend years ago when I found myself crying on the phone to her having chosen my then dog Bubble from the local dog pound and had to leave so many others behind; focus on your sphere of influence, she said. You can help one dog, do it well. And I did look after Bubble, give her a lovely life, train her, love her, feed her, walk for miles over the hills of Scotland and Dartmoor.
So I sit in a chair, close my eyes and relax as S talks me into my left foot. There I focus on each part as she mentions it, breathe into it, note sensations and move on. The focus comes over a few minutes, and I manage, as she reminds me, to notice when my mind wanders, to acknowledge it has, to bring it back to my left foot. It’s good that we started there, because My Left Foot is one of my favourite films. I have monkey mind, and the types of yoga I’ve done in the past tend to be active ones. When sitting and breathing, meditating, I can’t overcome the cramp from having tight hip joints nor the boredom of staying still and focussing on breathing. I start to fidget, daydream. Here, I’m managing remarkably well. I breathe into my foot, then out, and we move to another body part. S has previously wondered whether my medical knowledge will prevent me from breathing in and out of random body parts that aren’t lungs; but having a writer’s imagination I assure her it’s no problem, as long as I’m in the mood.
When we reach my chest a few minutes’ later I’m stuck. That shortness of breath blocks me as I move around it, sticks whatever it is that does the moving around. I’d tried to explain to S that my breathing is short, and that really is the best way I can describe it. A deep breath, a diaphragm-flattening breath, isn’t possible. I feel my steroid babies, the waistband of whatever too-tight clothes I’m wearing, and the abrasive quality of the air reaching my lungs, like tiny particles of sharp sand, or some chemical vapour scouring. The dull ache between my shoulder blades.
We move to my head. It’s uncomfortable. I’ve developed a headache over the past week, a fairly generalised headache still, but it’s moving, focusing more on the left than the right, and while it’s not a Hunt headache, it’s moving that way. Or is it? Is it in my abstract mind or my physiological mind? I’m imagining the Hunt-shaped hole in my brain. It’s closed, for sure. It was described as a space occupying lesion (SOL) initially, and the slight bulge I can feel over the craniotomy site, over which the palm of my hand fits nicely, makes me wonder. I’ve lost the carapace altogether now. But still I worry about Hunt’s return. The GBM is fast-growing, that’s why it’s so dangerous. And the fear of the GBM, the wondering. I can’t quite form the imagery beyond the Cheshire Cat smirk, an image of a vanishing as much as a materialising. So I get rather stuck in my head too. But I feel enough, enough to think I can manage. I’m to call and book another appointment when I know the timings for the treatment. It’s helped, not least to identify some ways in which I can regain some focus and get through the next six weeks.
After that I saw E in the Mustard Tree, and she pointed out that I’m looking ahead always to the radiotherapy effects on me, and seeing the worst case. It might not be that, so once again I have to move to the present, take a day at a time. I’m upset again, definitely out of control. She wonders if I hold grief in my chest. I hadn’t thought of that. I tell her about the needles. We talk about space; I don’t feel I can let go in my parents’ home, because I worry about them and it’s too complicated. I’m certainly not easy to live with in any case, and less so when grumpy on steroids and scared, and feeling pressured since I’m used to doing my own thing mostly without reference to anyone. Now I’m expected to organise, I am organised by others, constrained. Not in a mean way, but in a way that I feel deeply. Conflicts where you least expect them.