The date was set. I was to be starting RT (radiotherapy) once again, on June 17. The week before I was due to start, Rosa, my friend Hayden, and I spent three of the most glorious days in Hayden’s studio together, recording none other than the Rebel Rebel audiobook! Then the hospital called and said they weren’t ready for me yet and they needed another week. So I pulled out my ‘Joy’ list, and started collecting a few things to see me through until I returned to the post RT land of the living.

Mum, Dad and I went out to our favourite French restaurant to celebrate my Aunt and Uncle’s Diamond Wedding anniversary from the other side of the world. We visited our favourite brewery, Pretty Decent Beer Company, up at Blackhorse Road. They have a beer called ‘Employee of the Month’, and would you believe it, said employee is none other than a very trendy looking cow! I haven’t taken Clarence there yet (I will, I promise) but I do have a t-shirt of it (which Clarence loves) (see pic at end). They also have a beer called: ‘Self Published Erotic novel’ which is probably my favourite for a few reasons (no, my novel is not erotic fiction, but there are some sex scenes…).

About a week before I was to start RT, a large, hard lump appeared on my forehead. It had sort of been there for a while, general swelling and inflammation caused by the RT, but over the course of a few days it became a lot bigger, harder, and more pronounced. By the time I started RT, it was measuring probably around 2.5 inches horizontally across the right side of my forehead , by 2 inches vertically from eyebrow to hairline, protruding outwards very boldly. I emailed Dr. A, just to keep him in the loop – I had an MRI coming up the following week anyway. I knew what it was most likely to be, I’m not stupid, but once I had discharged Duty of Care by alerting the team, I tried to put it out of my mind as much as possible. And when the cyclic ruminating thoughts and fears threatened to take root, I got out my favourite all-natural ‘rescue balm’ and rubbed it gently into my face, while either meditating, or repeating some healing affirmations, all the while sending feelings of love towards my body, and yes, even to the cancer. No, I‘m not in the ‘I’m grateful for my cancer’ club (I wonder if anyone with incurable cancer is) – its presence is obviously not welcome and I desperately want it to decide it’s had enough now and will leave me alone, but it is still a part of me, arisen from within, from my own poor, confused cells thinking they’re doing the right thing. I’ve never been the type of person to see it as an intruder, an enemy, an evil alien taking root in my body, I’ve never named it, as many people like to do. And I aim to cultivate general feelings of love and healing and hope rather than being swept up in the fear and panic that would otherwise take over.
But anyway, we never know until we know. All I could do was to wait for the MRI and results, hope fiercely for no new bad news to come of it, and otherwise get on with things. Or so I thought. Seemingly out of nowhere, a PET-CT scan was hastily organised for a week after the MRI.  I later found out that my ‘Head and neck’ MRI only scans about as high as the middle of my nose… So my MRI scan to find out if I’ve had any further metastases (which we already know I do) wasn‘t in fact monitoring much at all. Finding all that out rendered me fairly speechless but yet somehow I wasn’t particularly surprised, sadly.

Dr. A had told me it was unlikely I’d get much in the way of side-effects from RT this time around, given that the location of the zapping was much lower and shouldn’t interfere with my face as much. That came as a welcome bit of information. But boy, how wrong could he be…

The exhaustion started first, I think. That same all-encompassing fatigue that rendered me mostly unable to lift my limbs, and restricted my whole world to going in for radiotherapy, and trying to get some sort of food through my somehow ever-further-restricting mouth opening, then trying to sleep so that I was able to get through whichever task came next. Not capable of catching up with friends, or even listening to messages, let alone replying to them. Then the pain started, at first as a general ache spreading from the lower jaw where they were zapping me, all the way up the right side of my face to the new forehead lump. Great. But we had the RT to focus on.

And my crop top was a winner, allowing me to avoid wearing a hospital gown. It stayed happily in place after I slipped my arms out, looked well cute, and allowed me to wear sequins over it. Which I didn’t do every day, but most certainly did on the first, middle and last ones. The world also slipped back into an Ice Age over the time of my RT, and the RT basement was kept even colder, to counteract the heat generated by all the big machines lurking down there, so it was certainly an extra little challenge to manage wearing a crop top in the chilliness.

They started me on Linac D (the name of my machine – standing for Linear Accelerator), which was the one I had (mostly) last time. So that was nice, the mask fit no worries, and my friend Krista was also getting zapped on the same machine sometime later that afternoon. I started a week before she did, and my regime was to last much shorter this time, and it was her very first time down in the RT basement. But we were in it together. Her shell (the official word they use for the mask) made for her chest and back rather than face and neck, had its own set of  challenges of restriction, privacy and personal space, and outfits (or complete lack thereof). Like we so often find ourselves saying, I hate that she is going through this and I wish more than anything that neither of us, (none of us) were. But given that we are, my Gawd I am glad we have each other. She was in having a massive wait-around-forever for a Kidney test in the Friday before her zapping started, and she came and met me in the RT basement and became part of my entourage, as I introduced her to it all (confusing a couple of people I think by her saying ‘I start next week!’ Hehe) before all four of us (Mum, Dad, me and Krista) went out to a well-deserved coffee together.

So Linac D was zapping away, doing its thing. But then it appears, it wasn’t. More often than any other time I’ve had RT, they kept switching me on to another machine. Not just me, might I add, everyone else too. It usually happens maybe once every 1-2 weeks, but this time it was more like 2-3 times a week. And without fail, whenever they shifted me on to B or C, the mask once again wouldn’t fit, and became so tight around my neck and I just could not breathe. Can anyone else predict their response? It was the same as always – it shouldn’t be tighter, this machine is exactly the same as D (even despite me pointing out that on one of them, B, the whole tray is different and is the only one that can be moved so low that a step ladder – or rather a little leap if you’re Jen – is not required to get up onto it. Or that the mask then ends up looser on D after loosening it for B/C). Their solutions offered were of course the same old ‘can you just put up with it for 15 minutes?’
Not breathing? I’m going to say that’s unlikely even for me… I can suffer through a lot but that might be slightly beyond me.
‘Maybe you could try shifting your head up/back/down/right/left and we’ll try putting the shell on again?’  No matter how many iterations of this particular game they wanted to go through, it never stopped it choking my neck. Eventually I managed to convince them that the only chance we had of getting through it was to make the mask looser. They didn’t like it and resisted as long as they could, but eventually they relented, and we got through the zapping. But the vibe was all out on those days we had to go through all that rigmarole, and I started to dread the moment I was told which machine I was going to that day, very acutely aware of how shaky my control was on my emotions and panic attacks.

But we were finding ways to get through it. No matter what machine I was on, you’d know it was me by the sheer volume of Beatles music blaring out – the only person with music that could be heard and enjoyed from out in the corridor. And I LOVED how much people did enjoy it, with my zappers singing along with me, then coming out to hear that my loud dance party had influenced someone to request The Beatles for their next session!

And dance party, it was.  Usually, when the monitoring zappers watched from their ray-safe viewing room, they would look for any movement from the zappee to see if anything was wrong. But when Jen was in, a particular smiling cow was dancing and leaping and jumping all over the place. So the panic gesture for me was a very respectable hand wave. But I was determined not to use it. Clarence, The Beatles and I were going to sing and dance our way through whatever we needed to, and it was bloody well going to work.