On Christmas night just passed, somewhere in the vicinity of 3 am, I woke up with a huge hunk of plastic lying next to me on the pillow.
‘Ah’ I thought. ‘Well, that’s that then. The thing I’ve been fearing and doing anything I can to avoid, has just happened. Well… I guess I’ll deal with it in the morning.

Let me take you back a little, as this story really starts back in the November of 2020. I had finally made it home to London, after being stranded in Australia for 10 months over Covid. A scan within three days of my return confirmed the cancer was back and this time I would lose my right eye, my cheekbone, and the whole of my previously reconstructed jaw and teeth. Once again, the price required to get a chance at a bit more time, a bit more life, felt just too high. But I paid it. When I woke up, from that hastily organised surgery, it was all gone, as promised, along with my right eyelids too, making any chance of reconstruction impossible. Where my beautiful eye had once been, its colour that ranged from blue through grey, to green depending on the day, there was now just skin. I’d considered the possibility of wearing an eyepatch, like my hero High King Margo, but in the end, I felt weird covering it over, I wasn’t ashamed, I had nothing to hide.

So for the best part of a year after my eye was removed, I had no interest in eyepatches. But then, the following summer, the pain in my face came back with a vengeance, and a small wound appeared from nowhere in my cheek, which bled and weeped at the most inopportune times it could manage. The hole seemed to get bigger and bigger, and the time came when I had no choice but to cover it up. Eyepatches became my thing. Though I quickly realised that they were not made with an actual human in mind – they all had the straps attached in the very middle of the patch, forcing them to sit over the eyebrow, rather than over the eye, or the area below it, where I needed it. So I got snipping and sewing and gluing, and making my own eyepatches. Functional, but also a fashion statement, and an extension of my personality. I grew to feel fine about having to wear them, and enjoyed matching them with my outfits and opposing eye makeup.
(Random side note: I actually made a couple for someone’s friend, who was losing their eye, back near the end of last year, which was an interesting process. I never heard if they were used though, or even if they arrived, for that matter… weird.)

As the skin on my face kept steadily disintegrating and exposing the insides, the surgeons wanted nothing to do with me, though I kept begging them to help me out. I had no idea how to deal with a steadily increasing hole in my face, and I was scared of what was inside. But they continued to ignore and dismiss me. Thankfully, I had a friend who had been under the same team and had also been left with an open wound. He’d eventually managed to get referred to a wound specialist, and he very kindly took the time to write down everything he’d learned, and everything that worked for him. I was so grateful – his information kept me afloat. But I was frustrated that my healthcare in a pretty serious situation was only possible due to my ability to make connections that happened to have some critical medical information, and my friend’s ability/capacity to sit down and lay it all out for me.

Over the next two years, the hole kept getting bigger and bigger, as the huge hunk of plastic hardware they had put inside my face during that surgery, to give it some structure, pushed harder through my cheek, in a desperate attempt at liberation through my skin.

Then, in early 2023, the hunk of plastic, which had made excellent work at wearing through the last of my skin, started falling out.

I was terrified! I was begging and pleading with the surgeons to help me. The situation felt dire. But still, they made excuses and fobbed me off. Occasionally they would agree to help me and I would get my hopes up, then they’d just ghost me again. We had been through so much together, we had even collaborated on publishing a scientific paper together but when I was in a dire situation, desperate for some healthcare from my doctors, they washed their hands of me.

It had got to the point where I was having to just sit around holding the bit of plastic in with my hand.  There was no way I could even leave the house anymore, or do much in the way of talking or existing. And the pain of it falling down onto my plate/denture was starting to get to me too.

And so it was I found myself standing in front of my mirror, a tube of superglue in hand. Something needed to be done, and no one else was going to do it. Did I superglue my face together? Running the unforgiving clear liquid along the top of the plastic hardware, and pushing it gently upwards in the desperate hope it would somehow anchor it to something within the depths of the open wound in my face? Yes reader, I did. And it worked surprisingly well. I had to keep redoing it every month or two, I took to always making sure I had a tube of superglue with me when I travelled. It became such a normal part of my life, just another thing I had to do, another adjustment I had to make, that it’s only when I encountered moments outside of myself – mentioning it to a friend, or typing it out now – that I realised the absolute absurdity of the situation. I suspected it would eventually stop working, but for the time being, I had given myself my life back. I am nothing if not resourceful. And I wouldn’t want it any other way, though I do wonder if my ability to save myself, to pivot and adapt, may sometimes result in medical professionals just assuming I’ll be fine and don’t really need their help. Before I have appointments, I am always trying to figure out how I should present for each one. Do I go in full pirate brilliance, with my huge boots and a dashing coat, making it seem like I am absolutely smashing it? Or do I dress as hopeless as the situation feels in the hope they’ll take me seriously this time and give me the help I desperately need?

Anyway, then, as the story goes, I went blind. It became impossible to keep supergluing my own face together. Dad made a very gallant attempt at trying to keep  gluing it for me – another of those bizarre moments outside of myself that highlighted how bonkers this situation had become – but it was only holding for a day or so, and I suspected we were now at the end of the line with my superglue fix.

Which is what led to my Christmas surprise of the hunk of plastic finally having achieved its exodus from my body.

Immediately, talking was much more difficult as there was now a huge, uncovered hole where my cheek was supposed to be, with all the air escaping out through it as I spoke. I don’t remember how I told my parents what had happened, as chilled and nonchalantly as I could muster, I think. The thing I had feared had happened, but I had still made it through the night and had woken up to another day. I was ok. But this was beyond ridiculous. I NEEDED help!

Somehow, between Dad and I both separately trying to get the surgeons to finally listen, we managed to wrangle an appointment out of them.

And so in January, we all tottled along to that appointment. There was a new person on the team, who was a maxillo-facial prosthetic surgeon. Just what I needed! I’d been pushing for a referral for almost a year to a hospital with a facial prosthetics department, and had even had it promised once, before it was then taken away from me again. But this was better! I wanted some sort of cover for the hole (which I hoped would improve my voice quality and maybe even allow me to sing again) … I also wanted them to smooth my denture/plate a bit so that it stops lacerating my inner cheek and gums.

It was a strange feeling to know that there were now people at UCLH who had seen what the state of the inside of my face was, and I had no idea what their hair colour even was, let alone what my own face looked like. I had mostly shielded everyone close to me from seeing it – although I didn’t have a problem with showing them if there was a reason for it. I ended up showing my parents, before the plastic had fallen out, mainly so that I felt comfortable being at home sometimes with my patch off (it gets painful and annoying at times, especially if I’ve also been having chemo or radio). And I wanted to show them with a bit of warning, not just them seeing it in passing and getting a scare. But they were great with it, of course. I wouldn’t say it didn’t phase them, but they were certainly very chilled about the whole thing. Then we went through it all again when the plastic which was covering the hole over, fell out. And on a whole new level…

When we went to the first appointment where my original surgical and implant teams finally got their wish of making me someone else’s problem (the new guy’s), they also instructed us that my parent(s) would, for a short while, to bridge the gap until we had a proper solution, need to start cleaning out the massive open wound in my face every day to prevent biofilm from building up, then coating it with soft paraffin (like Vaseline) to stop it from drying out. We went from me trying to shield them from it, to them getting literally inside my face on a daily basis. They gave us enough sponges and paraffin and sterile water for a week and promised me they’d sort me an appointment (and indeed a final solution) within the week so we wouldn’t need to clean it anymore. That appointment never happened, so we had to sort out our own way of doing it with supplies we had, DIYed, or could get ourselves (some of which were actually purpose-built for it, thanks to the previous recommendation of my brilliant helpful friend). So, 4 months later, we still spend around 20 minutes each day with Dad (sometimes Mum) digging as gently as possible around inside the open wound that goes so far back into my face (about a full finger length in depth, trying to cause as little pain as possible (to varying degrees of success) to all my exposed nerves and flesh… The places life takes you, eh? Dad did always say he wanted to be a doctor…

Anyway, between the usual hospital admin and scheduling mishaps causing unnecessary chaos, and requiring me to use every connection and route I had, to force out every appointment, I started working with the new guy, M, and his technician, R. On my first session with M, he asked me why I wanted this – as in, what were my priorities with it?
‘To look good?’ he suggested. ‘Or perhaps for comfort?’
‘Mainly for protection, and functionality,’ I replied. ‘I’m a singer, and I’m currently working on an audio project that’s pretty important to me, and my voice just isn’t usable now, I hope that we might be able to find a solution that can give me that back, at least to some extent.’
‘A singer?’ he asked,
Mum stepped in as my PR consultant, and handed him one of my business cards with the details of my album on it.
He announced that we really should be listening to music while we worked, and a few moments later, I heard the unmistakable first notes of ‘French Cinema’, the first track of my album, Dreams of the Lights, weaving all around us. I’m not one of those people who can’t bear to listen to their own creations. I love my album. The artist I listened to most last year was Jen Eve. I am so proud of that album, so happy with it, and hearing it there, hearing my darling Sam’s voice serenading me while M made a mould of the hole in my face, felt pretty special. In fact, when I went to my next appointment with him, he put it on again and explained to R, almost with pride, it felt, that we were in fact listening to MY music. It is an example of how kind and considerate he is. He has made it very clear that we are working this out together, he doesn’t know exactly what we’re going to do but he is dedicated to working it out. And I wouldn’t want anything else. I would be very wary of someone who said they already knew exactly what to do, and didn’t involve me in the process. So we seem to be finally making some progress, and he seems like just the right person to be onboard. I wonder what he looks like.

* ‘The Depths’ is a term coined by my darling friend, Ferg, to describe the cavernous recesses in our face, tunnelled out by surgeons, and left with us to live with and manage. I have a short audio clip of him croaking it at me in the time after his damn cancer had claimed most of his voice, and knowing it’s there makes me smile on days when I miss him the most.