Well, it’s been a big week. Such a big week that it’s hard to know where to start. I might start at the biggest thing and work back from there.
As you all know from my last couple of posts, after the latest surgery/procedure, I was left mostly unable to speak, as well as not able to drink without drowning myself. I felt pretty rubbish. The teeth wouldn’t stay in, and even though my life mostly only consists of sitting at home on my own at the moment, I was feeling quite far from human. I couldn’t voicenote friends, I struggled to even hold a brief conversation if I needed to answer the phone. It was getting me down. As you would expect. Totally legitimate response.
I got a call from my teeth people. Basically, they had made some new bits for my mouth and my face, parts they would put in under general anaesthetic. Only, it’s nigh impossible to get in to the hospital at the moment, what with all this Covidy stuff going on. Which would mean who knows how long it would be before I’d be able to speak again. A concept I did not want to think about.
But, they said, they would be willing to try to do it in the chair at the dental practice, without anaesthetic, if I thought I would be up to it.
Did I think I’d be up to trying?
I didn’t really know what I was agreeing to, but I knew I at least wanted to go in and speak to them, to see what they were thinking, and to see if we could improve things at all. I did not feel like I was in a stable enough state to last an indefinite amount of months until situations allowed me to get back into hospital. I wanted to at least try.
So on Friday I went in. They showed me the pieces they had made. A huge plasticy looking piece that would sit up in the cavity in my face, right up where my cheekbone used to be, and some new dentures to sit on that. Plus a metal bar to attach to and connect up my implants (the metal bits drilled in my face to connect my teeth to). So if I consented to them trying, they would be pulling things in and out of my fragile little face and getting deep inside my cheek. Which, might I just reiterate, they would have usually done under general anaesthetic, but that we would try without.
I just stared at the pieces they held in front of me, not quite comprehending what they were saying. You’re going to be putting that up into my face…? Here? Now?
This sounds like the stuff of nightmares, right? And it was. BUT I will interject immediately and say that we proceeded very carefully and worked together on it. They were entirely led by me.
The first thing was to remove the teeth which kinda just jumped themselves out of my mouth into their hands anyway. I don’t think that lot of temporary teeth liked me very much. The next bit was to pull out the structural thing that was sitting in my face, holding it vaguely where it was supposed to be. They pulled and gosh it hurt. It felt like I was being pulled apart from the inside as they disconnected it from my face and pulled it down into my mouth. I writhed and screamed. In pain, yes. In shock, absolutely.
We all stopped.
The surgical nurse has been my absolute lifeline throughout the last couple of years, and in this moment she held my hand. And she hardly let it go for the remainder of my time there that day. As well as dealing with her in a professional sense, I have come to consider her a friend and no matter how many times I tell her just how much I appreciate her nor how much she means to me, I don’t think I can adequately explain in words just how much.
Let’s take a moment to remember I can’t breathe through my nose, and my mouth doesn’t open very wide anymore. So here I am sitting with this huge thing in my mouth, pulled down from my face trying to come to terms with what was going on. The teeth man said that we could stop, that he would put it back in if that was what what I wanted. Though it was likely to hurt as much going back in as it did when it came out.
‘What do you want to do?’ He asked.
‘I don’t know.’ I said, fully aware of how useless this was to say, but struggling to connect with a definitive. Eventually I said we should keep going.
‘Let’s do it!’ I said with a fist in the air. I didn’t want to go back to what I’d had.
So with she and I holding hands, me trying to concentrate on my breathing, and him trying to manoeuvre the damn thing out of my tiny mouth, eventually we got there. It was out. I tried not to think about the fact that my face was now empty from my mouth up to my eyebrow. I didn’t want to know. Nor did I really want to think about shoving things all the way up into there.
I say ‘no anaesthetic’, and I mean it in terms of no needles, no local, no general. But after a while they at least started painting anaesthetic gel on the places where they were pulling at my raw gums and causing some of the pain. This helped to numb for a bit, and my surgical nurse was, as always, so attentive to my needs – painting my gums when it started to wear off, protecting my lips with vaseline, clasping my hand whenever things were about to get scary. Compassion and empathy shines out of her.
After all the bits had come out. the next move was to attach a metal bar to the implants. This always feels incredibly strange because although they’re doing things in your mouth, you feel it wherever the implants connect to – like cheekbones and other parts of your face. After a few attempts, the bar was on. This, I was told, was the main thing they wanted to get done. Anything else was a bonus.
Then they tried to put the new big plasticy thing up in my face. It’s a very odd feeling having people getting intimate with the insides of your face while you’re awake. Even I haven’t even been to those depths of myself. Nor do I really want to. It’s hard to say what transpired to create the next lot of struggles, but no matter how much they tried to push it up into my face, it was too big. It’s possible that as soon as they got the previous bit out, everything started contracting and my cheek started to say ‘no, I don’t think we’re going to put anything else up there’ because by the time we managed to negotiate it into place, it was already too big to quite fit into the space.
So the teeth man kept popping into an adjacent room evidently filled with various tools, to sand it down so it would hopefully fit.
Still too big.
Back to the room.
The rest of us were left to catch up about how we had been lately and what we’d been up to. I kept trying to talk (look, it’s really hard to stop me from talking, ok?) even though I had an empty face and was pretty unintelligible. I couldn’t help laughing at my useless attempts at speech. But we managed to catch up on things while we waited for him to return.
Still too big.
Back to the room.
Eventually we got to the right shape and managed to get it in. My mouth and face was aching. But between hand holding and concentrating on my breathing I managed to endure it. Quite well, I think. I also did this thing where I rubbed my thumb print against my fingers one at a time, feeling the sensations. I think I picked that up in yoga at some point. It didn’t manage the pain of course, pain is still pain. But it did focus my mind from some of the peripheral panic of the situation. I was cool, I was calm. Sort of. Also terrified.
Then the teeth wouldn’t fit, so they needed some adjusting to get them to stay. I watched as they just started pulling bits off them, which made me chuckle. They then used some sort of silicone-gel-type-stuff to mould it to my mouth.
They didn’t fit perfectly and it took a lot of adjusting to get them to stay, but they were so much better than what I’d had before.
And immediately, I could speak again.
It had all been worth it. I’d survived. They’d got me through it.
Afterwards, they said they weren’t holding out hope that they’d be able to do that much. They were amazed we’d been so successful.
Bloody hell, so was I.
I was in for about two hours. When I left, I was a bundle of nerves. I couldn’t face getting in a car so I decided to walk the hour and a half journey home, first heading up through Regent’s Park. I voicenoted some friends as I walked through the fields of daffodils, making the most of my reclaimed ability to speak. My bottom jaw was trembling as I spoke.
‘Adrenaline,’ as my friend Rosa quite rightly diagnosed it. ‘That,’ she said ‘is why they would normally put you out for it’.
Ah yes. That’ll do it.
She also said to me ‘you’re doing all of this, you know. I know it feels like people are doing this to you, but you are doing it.’ And for once, I really felt that.
Those who have followed me for a while, or those who have/have had cancer, know that despite what the media might want to tell you, we have little control over the things that are done to us. We don’t ‘fight’ any ‘battles’ to cure ourselves, we merely endure whatever treatments are available. We are but passengers in our own lives as soon as we are diagnosed. But that whole experience really did feel like something I was part of. As the teeth people had said, the benefit of me being awake for it is that it can be a collaborative process.
The terrifying part (yeah, haven’t even got to the worst bit yet) is that I’ve got to go back in next week and they want to teach me how to TAKE MY OWN FACE APART REGULARLY. I don’t even want to think about that. Even just looking inside my mouth with my teeth out makes me feel queasy. So that’s future Jen’s problem. And they’d better give me a good reason for why I want to be doing that to myself…
11 Comments Add yours
My daughter has relapsed lymphoma. We share your sentiments, control is an illusion, isn’t it? You’re a gifted writer. Thank you for sharing your life and your talent. We are reading your words and want you to know you are not alone.
Love from Maine
Dear Jen, you are the most breve person I have ever met. I cannot possibly imagine the choices you have to face ,and the pain you endure. I know you will get there. Your courage alone will ensure that. All my love, jk
You’re the bravest person I know right now! We are on our own journey and my daughter tells me it’s not bravery but what you describe as giving yourself up to whatever treatment is offered as the best. Thoughts and strength always to you🙏🏼💗💗
Ah your daughter is a very smart person 😊 more necessity than any form of bravery.
I’m actually working on putting some words together around this!
Sending loads of love to you and your daughter 💜
Dear Jen, I am constantly amazed by your bravery! You are an inspiration to all of us that follow your journey. I’m sending you love and courage to fight the battles ahead of you. Your writing skills are thought provoking and they paint such a portrait of your heart.
I’m on your team even though I’m in Pennsylvania in the USA. Sending love to you.
Maria, age 72, retired nurse.
Dear Jen … you are doing just brilliantly. You are having to manage such a great deal and the way in which you tackle these hugely challenging situations , is an inspiration. You are helping me manage our own cancer journey with our little granddaughter, helping me to have the strength to support my daughter. Sending you much love. Louise xxx
I love this part – ‘we are all passengers in our own lives’.
Bless your honesty. Bless you for the support you give to our family. Bless you for being a fellow passenger with someone I cherish.
Just wow. I’ve got such admiration for your bravery, honesty and resilience. It’s so unfair and awful that you’re having to go through all this, but the way you’re dealing with it is just incredible. Bless you xxx
OMG Jen. It’s sounds like a horror movie. I cannot begin to imagine what it would take in terms of inner strength to go through with this. Respect!