The RT (radiotherapy) had made my mouth so sore. It felt so fragile, and anything I ate with the tiniest bit of heat, whether spicy or physical warmth, caused me unreasonable amounts of pain. Even balsamic vinegar or lemon juice was unbearable. Like such things hurt on a cut, it was as if my whole mouth was covered in cuts. And I suppose it kind of was. The radiotherapy had really built up and was fusing my jaws together too. Before I started, I could just fit one finger between top and bottom teeth, but as radio went on, that became increasingly less and I was starting to wake up in the mornings, hardly able to separate them at all.

I met someone years ago, a brilliant man in an eyepatch (long before I’d had to join that particular exclusive club), who could no longer open his mouth at all because of the damage radiotherapy to that area had caused. He talked through gritted, unmoving teeth, though his sense of humour shone out of him.  Sadly, like so many before and after him, he is no longer kicking around this planet. No matter how much he kept giving, kept losing, in order to appease our evil cancer overlords, they were not kept at bay for long. They never are.

But that lovely man exists still in my memories of him, and a constant reminder to do anything I can to preserve whatever jaw opening possible.  Although eating is already quite difficult, losing it entirely would be devastating. And as I’m not capable of using a straw, I have no idea how I would survive, should it come to that. So every few hours, I jam my fingers in between my teeth and apply steady pressure downwards, on my bottom teeth, trying to calmly breathe through the immense pain which spreads all along my jaws, up the sides of my face, into my ear,  and all the way to the top of my head, with an ache that sets in and won’t  go away,  all for a couple of not very convincing mm that only last for a very short period of time before reverting to being nearly closed again. Then I get to rest my poor little face for a few hours before going again.

But the damage to my mouth was nothing compared with what was going on slightly further up…

For all the damage the RT was doing to my mouth, it was multiplied tenfold in The Depths of the huge open wound in my face. It had started spontaneously bleeding, sometimes up to three times a day.

It bled when I was cleaning it; it bled when Ma was cleaning it. Once it bled when I was sitting on the sofa chatting with my friend, Adela. As I no longer have the roof of my mouth, jaw, cheekbone, or right eye, the right side of my face is just an open hole on the inside from tongue and bottom teeth, all the way up to my eyebrow. It’s just a big open empty space, save for the removable bit of plastic that provides a makeshift roof of mouth, allowing me to sort of eat, drink and talk (but it is not sealed in any way), and is attached to some lovely useless little plastic teeth. So as I chatted to Adela, the blood, originating somewhere up within the big hole that is my face, dripped nicely down into my mouth for me to swallow, while I hoped it wasn’t turning my teeth red, and tried to finish our chats and waited for her to head off.

Once it bled after my nightly saga of cleaning my teeth and dentures, and I called out to Mum to help. We then stood there over the sink together for at least an hour, the blood dripping into the sink, with Ma occasionally blotting it with a tissue. In the end, we managed to get it to clot then stop, a platform of blood pooling on top of my plate (the makeshift roof of my mouth).

But then there was the night it didn’t stop. I was exhausted from the outset. I had just finished radiotherapy, and I was knackered beyond anything I had ever experienced. I hadn’t managed a sleep that afternoon, and I was TIRED beyond belief. At about 10:30pm, way past my usual 8-ish bedtime, groggily calling out to The Sandman to help usher in the sleep I was so desperate for, I tasted blood. My stomach sank. Suddenly I needed to pivot and avoid falling asleep, lest it didn’t stop, lest it choked me in my sleep as it ran down the back of my throat and steadily filled my lungs with blood, lest I woke up with myself, my bed and Clarence completely covered in red… So I put on my headphones, cranked an audiobook (Shantaram at the time, an unreasonably long, but incredibly good book set in India, and recommended by my dear friend Krista – thanks love!), and waited for it to stop. An hour later, I was still waiting. By 11:30, I didn’t feel like I could handle it on my own for much longer, so I tottled out to the living room to rouse my parents. I asked Ma if she might be able to do that blotting thing again, leaning in through the hole in the front of my face with a tissue, trying to take some of the blood out that way so that I didn’t have to swallow it all. We stood in the bathroom together under the light I couldn’t see, trying to manage it. Eventually I moved to sit on the toilet lid, afraid my legs might not hold me up much longer. Mum kept flitting around above me, filling tissue after tissue with blood and running them one by one to the bin in the kitchen.  

I knew we had been there a little while when I first asked Ma what time it was.
‘3am,’ she replied after a pause.
It took me a moment to register what she was saying. I had been bleeding steadily for 5 hours.
‘3am,’ I echoed.

She says, “Baby, it’s 3 AM, I must be lonely”
And she says, “Baby, well, I can’t help
But be scared of it all sometimes
And the rain’s gonna wash away, I believe it”

No, she didn’t say that, but the band Matchbox 20 did. I couldn’t help myself.

3am turned into 4am. Later, much much Later, Ma and I would reflect on the whole thing and agree that time had ceased to move in the usual manner. Somehow it seemed that although it all lasted so long, it always felt like a shock when we checked the time and realised another hour had passed.

Somewhere around those early hours of the morning, I decided we needed to try something different. So I tried to stop the blood running down into my mouth, by blocking some of the biggest gaps with my tongue. We couldn’t tell exactly where the blood was coming from – somewhere on the back wall, right where the tiny divider of remaining flesh keeps my brain hidden for now. But my hope was that we might be able to get the blood to pool, and cover the spot where it was bleeding from. And that it would eventually clot and stop. A cunning plan perhaps, but as the blood pooled, filled all my breathing passages, nearly choked me as clotting blood lodged in my throat forcing me to attempt to cough it all up, and a thick plug of blood started to turn to rubbery jelly which started to partially harden, it still didn’t stop. It was coming from further up, and my cunning plan did little other than channelling ALL the blood right out the front of my face.

4am turned into 5, and I had formulated a new cunning plan. If that hadn’t worked, then it must be bleeding from higher up. What if I tried lying on my back on the bed, hoping the blood might clot up that back wall? It seemed as good a plan as any, and after 7 hours of bleeding, Mum and I having been set up in the bathroom for about 5 ½  (her standing all that time, at some point we’d grabbed me a pillow to relieve my neck from the pain of holding my head in a backwards position to manage the bloodflow), we wombled on through to my bedroom. I wasn’t dizzy, or faint, but I was feeling pretty wobbly and struggled not to fall over without holding onto something. How much was due to my  blindness, how much was the sleep deprivation, and how much was blood loss? Mum had spent those many hours calculating. 2 teaspoons lost every 5 minutes, she guessed. And given we knew they took about a pint when giving blood… When was the point it got dangerous, and had we already passed it? I lay on my back on the bed, Mum taking what was probably quite an appreciated seat next to me, keeping a watchful eye. But the blood didn’t stop. In fact, we realised after a while, it seemed to be flowing out faster. In later reflection, we realised it possibly hadn’t been the best idea to get the wound on the same plane as my heart. But we’d had to try something…

By 6am, 8 hours of solid bleeding later, feeling rather helpless, we made the call. We needed to call an ambulance.

Only… Did anyone know how to actually call an ambulance?

It turned out Google did, so Ma called up and one was sent. It would get to us in 18-60 minutes. Ok…
I tried to think clearly as I instructed Ma and Da, now awake and back on board, what to throw into a rucksack for me to take. I had gone into A&E enough times over the years (though never by ambulance) to know it always paid to be prepared. Hours waiting to be seen, and often (always, in my experience) followed by an admission. And I wasn’t going anywhere without Clarence. Or a toothbrush. Or underwear. Dad had folded up a whole lot of paper towels for me to hold up against the hole in my face to fill up with blood while they packed things at my request.

6am became 7am. I sat on my bed, with Ma sitting on the desk chair at my window, keeping a lookout. The napkins were filling so quickly. So damn quickly. I was propped up against my pillows, nodding off to a sleep I couldn’t hold at bay, before jolting straight back out of it to grab a fresh paper towel to replace the previous one filled with blood. Mum nearly fell off her chair at one point, also dozing off, stopping herself from falling just in time.

And still we waited. It was coming up to 90 minutes since we made the call.

‘There’s just so much blood,’ I mumbled, worrying about how quickly the napkins were filling.
Then, miraculously, the next one just… didn’t.
‘Guys, I don’t know why, but this napkin just isn’t filling up…’
We did a few tests – tilting me this way then that, confirming  that after more than 9 hours, it seemed to have stopped bleeding all of a sudden.

We wondered what to do. Should I still go to hospital given that I must have lost some fairly significant blood? I certainly didn’t want to, I just wanted to sleep and recover. I knew it was the best place to be if I needed to be there, but maybe I didn’t? It was also the worst place to be for any sort of rest and recovery. I decided that since they still hadn’t turned up, I didn’t want to go. Sitting for hours in A&E waiting for blood tests and trying to describe my situation was about the last thing I wanted to do. So Ma called them up again and called them off. Right as she was hanging up the call, what do you think pulled up outside? My ambulance, of course.

Mum went rushing out to tell them what had happened.

They asked if they could still come in and just check in, taking the usual Obs (bp, pulse, oxygen saturation, etc.), so back Ma came with two strapping and fabulous young lads (I actually asked Mum and Dad later if they were fit – Briitish term, sorry internationals – and they couldn’t remember! Different priorities I suppose). But what they certainly were (and we all agree on this one), is that they were two incredibly kind and fun paramedics who, even at the very end of what must have been a full night shift of rescuing people with an ambulance, were all smiles and joy. I think it must be a certain type of person who fills that particular role in our society. Every one I’ve met has been pretty incredible (shout out too all my paramedic readers and friends out there). My obs were fine as we all laughed and chatted away. At one point we were all comparing our favourite Beatles songs (after one of them noticed the 4-layer stencil of Paul McCartney on my wall that I had made many lifetimes ago). I also have this very surreal memory of Dad showing them one of the guitars he had built (yep, my Dad builds absolutely spectacular guitars) and I wondered if this was all actually happening, or if the blood loss was causing me to hallucinate the whole strange situation. But no, I think these are the exact kinds of situations us Taylors tend to find ourselves in – we have a knack of making friends anywhere.

Satisfied I seemed mostly ok, they said they were happy to leave me if that was what I wanted. If I preferred to go with them and get properly checked over at hospital, with access to blood transfusions if needed, then they would happily take me in. But they were happy that I seemed stable, and so was I. I didn’t want to go anywhere other than my incredibly comfortable bed. Before they left, we asked where they would have taken me – to my closest hospital, or would I have been able to go into UCLH? They said they could do either, as they were both close, and it would make more sense to take me to where I was getting all my regular treatment at. They said that if it happened again, just let the paramedics know where I wanted them to take me when they arrived, and they would happily oblige (Ooh! Cafe perhaps, or maybe a spa?). So that was a reassuring thing to know. And with that, they headed off back from whence they came.

I slept the rest of that day. Crashed out and hardly stirred until the evening. Mum had crept in to check on me a few times, once Googling ‘how to tell the difference between sleeping and unconsciousness’. She wondered whether to wake me and check, but I’m glad she didn’t, as I was in a deep, restorative, well needed sleep. When I surfaced at about 5pm (and no, I had no issues getting a full night of sleep the following night either – I clearly needed it), Mum seemed to have about 10x the energy I did. I asked her how she had spent the day. Had she slept? Yes, for about an hour or two. Then she got up and… went for a run, made some curry paste from scratch, did about a thousand other things, and was in the process of preparing dinner. Absolutely amazing, but each very much to their own.