Teeth talk time

I thought it really was about time I did a teeth update.

So I’ve been going in to trial some teeth to see how they will look. A couple of weeks ago I went in ready to try some teeth on for size, I sat in the chair, and I put the teeth in. Now they don’t stay in on their own, I can’t talk or anything with them, but if I keep my teeth together then they stay in place. They gave me a hand-held mirror, which I sat on my lap as I put the teeth in, eventually putting it up in front of my face once they were in place and… well… I think watching this clip will give you an idea of how it went. This is an actual, exact re-enactment of how it went (must watch this before reading on)…


Yep. OK so they weren’t quite that bad, I slightly jest. But they were big. I felt quite strange. Actually it was quite demoralising, not going to lie. You pin all your hopes and dreams on looking a bit more normal with teeth and you see them and all you can think is ‘they’re not my teeth… Who’s teeth are they?’

Dwayne’s apparently.

I was clearly unhappy and the dentist and her assistant were telling me they looked good but I just didn’t feel right. She said ‘it’s probably just been so long that you’re used to seeing yourself without teeth and now having them there again seems weird. You’ve probably forgot what they looked like.’ Not a damn chance. ‘You’ve never had your teeth out and your face rebuilt’ snapped petulant teenage Jen who was lurking somewhere inside me. I felt bad saying it, but it’s true. It maybe seemed like the right thing for her to say but no, I don’t forget exactly what the teeth I have had for 30 years looked like just because I’ve been 9 months without them.

It was hard to tell how much of my dissatisfaction was just in general with the fact I’m going to look different now anyway no matter what, or whether they really were too big. But it felt like something worth fighting for. Although they told me big teeth are beautiful and they look fine, I was adamant that I needed smaller teeth. Well… I say adamant, if they were to tell me that smaller teeth wouldn’t work, I would learn to live with whatever I had to. But they agreed to try again and we booked in for me to go back the following week to try a size smaller. I didn’t feel great when I left the dentist surgery that day.

I worried of course that I wouldn’t like the smaller teeth either and I would have wasted their time and made a nuisance of myself. I almost feel like they’re a private practice and I’m a charity case (i.e. NHS), like they’re doing me a favour for treating me and I should just be grateful and do as I’m told. They don’t make me feel like that in any way, but I can’t help but have that thought in the back of my mind. I am so grateful to them for treating me, I know how lucky I am.

Anyway, cut to a week later. The weather had taken a turn for the worst, the day was cold, dark and rainy. The previous week had been sunny. Was London feeling my worries too? Mirroring my apprehension?

I sat in the chair again, held the mirror, put the teeth in, tentatively pulled the mirror up in front of me and smiled. Like… Smiled. Not just moved my lips back to reveal my teeth, I really smiled. They were my teeth. I felt relief wash over me. The dentist and assistant agreed, these were the ones. In fact the dentist said she was glad that we went for smaller teeth and that she has to remember that they’re my teeth. It’s a good point. Maybe the big teeth do look better on paper but it’s important for them to look good on me. That I feel comfortable.

She took a couple of photos and showed them to me. They were difficult to look at because it showed me how little of my face the teeth would actually fix, and how snarly I’m going to look, but hey. I’m going to have to come to terms with that eventually.

I should just interject here, someone said to me the other day ‘please don’t think I’m being an idiot, but didn’t they take moulds before surgery so that they would have something to base your teeth on?’ Not being an idiot, though I can see why you might think so for asking, you would think it would be the obvious thing to have done, but no. The dentists wanted moulds, but I guess it wasn’t something my surgeons had thought was an important thing to do before knocking my teeth out. I think in future it would be a bit better if somehow that process could be ironed out for any others going through a similar thing. It only takes a few minutes and would make such difference for the process later.

Now they’re starting to think about implants. They’re not confident they’ll be able to give me many, maybe a couple. But fingers crossed they’ll be able to get at least one in, because that will mean they’ll have something to anchor some dentures to. Otherwise they said they can look at implanting a piece of metal in my new top jaw and holding some dentures in using magnets. They’re aiming for surgery in Jan/Feb.

So here we are – angled and smiling, so it doesn’t look too bad…

I give you my trial teeth!

The next page in the teeth story…

I had another appointment with the teeth man today. Actually at the moment it’s the teeth woman. She’s working with me to see if we can make a temporary denture-type thing for the time being, before we start looking at implants.

Today it was to see if something will fit in my mouth and to see how far we can build it out to hopefully make my nose and face less collapsed. The answer is not very far. I still have this bit of scar tissue right across the inside of my lip which means that when teeth go in there, instead of pulling my lip into my mouth as it does now, it pulls my lip up into a super attractive snarl and I can’t close my lips. Which leaves me looking rather ridiculous. My nose is still collapsed, my face still sunken and I’m snarling with open lips.

So…

I’m not sure where to go with that. Also as it will all be held in place by the few teeth left on the left hand side of my mouth, I think it will be rather loose and might not make talking or eating very easy.

I was holding out hope for this next step to make things a bit better, but being hopeful does tempt fate and I should really have known better. I guess I was prepared for this… It’s still a bit disheartening. But on the way home I discovered that Bowie narrated Peter and the Wolf and it’s on Spotify. So… I feel like that’s some sort of consolation.

They’ve made some super cool moulds of my mouth, which are fun to look at. They were less fun to make. As I can’t breathe through my nose, it’s a bit of a nightmare to have your mouth filled with the gooey stuff they make moulds from. At one point she covered up my teeth completely and I couldn’t breathe at all. Oh well, I survived, still breathing! Two more weeks until my next appointment, and another appointment two weeks after that. No idea what each is for specifically, or what sort of timeline we’re looking at for what. But we are moving, so that’s something.

Monday Monday Monday

And not just any Monday, but one that had the potential to hold news about small white things that go in your mouth and help with things like talking, eating and generally living.

Yes.

Teeth.

After weeks (months overall!!! 7 in fact!) of waiting and chasing, I finally got the call I had been waiting for: a referral to the seemingly elusive teeth man.

Let me try to explain the things riding on this appointment.

Firstly I was hopeful to find a timeline and course of action for teeth and hopefully get some information about the process because I have less than no understanding what happens or how it works. In fact the only things I know about it were from a chat with the CFO at work who seemed to have some very basic knowledge about implants.

I went in and had an x-ray first before seeing the teeth man. The machine played a strange digital rendition of Fur Elise by Beethoven. Which coincidentally is also the sound my doorbell makes. I tried to stay still and not giggle.

The waiting room was fancy. This place was fancy. The dental nurses wear white and the dentists blue.

My dentist Dr Dawood is my new best friend (yes I’m well aware I’ve got a few of them now). He was so nice, really easy to talk to, and also realistic. He looked at my teeth and asked if I ate a lot of fruit. Um… Not particularly… Then he asked if I’m vegetarian. No… Then he said ‘how have you been surviving?!’ I said brilliantly! I munch on everything!

So, we start on Wednesday (omgomgomgomg), taking moulds first. They will get the ones that Deepti took before surgery and make my new teeth just like my old ones! Cooooool.

First they will look at making a denture and see how it fits (if it even fits after everything that has changed in there) and then later consider implants.

Until we start trying we don’t know if it will work. If it doesn’t work, it’ll be back to my surgical team and back into surgery to look into more reconstruction from another body part. Yay for being plunged back into March.

Also there’s a good chance my lip won’t be able to fit over teeth anymore, especially with my sunken face, collapsed nose and the scar tissue from the stitches. So there might be issues there with actually fitting teeth in my mouth. And even if I can get the teeth in, they won’t fix these things so I’ll always look a bit odd. Better get used to being told by new people I meet that I have a cleft palate… Eye roll

But still, teeth is better than no teeth. And we’re aiming to have something temporary by the end of November! GUESS WHAT THAT WOULD BE IN TIME FOR?!! BIRTHDAYBIRTHDAYBIRTHDAYBIRTHDAY!

I was bouncing around manically and smiling rather widely as we booked in appointments over the next month or so. The receptionist who booked me in was lovely but I had to laugh. She asked me if I’d had an accident and I said no, cancer, and they cut my jaw out and now I’m just waiting for teeth.

‘Oh so your mum or dad has it too?’ She asked.

‘No, there’s no genetic link for bone cancer’ I replied.

‘And you didn’t smoke or anything?’

‘Lol no…’

The old what-did-you-do-to-cause-it-so-I-can-check-I-won’t-get-it job. Sorry love, you’re just as likely to get cancer as I was. Most cancers don’t have a genetic, environmental or lifestyle cause, we didn’t do anything wrong to bring it on ourselves…

So I finally met with my surgeon…

It was a busy day actually. I had to go in first for a chest x-ray. This is one of those things I have to have every two months. You see, the most common mets for osteosarcoma (look at me with my cancer vernacular. Mets = metastasis = spread) is to the lungs. So we keep monitoring. Monitoring is good. That was all quick and easy.

Made a new friend in The Living Room in the Macmillan centre, standard. Hi friend! Originally from NZ, we had some chats about that side of the world, as well as people, society, cancer and the cancer gene (Which fascinates me). It would be nice to catch up with her again one day.

When you’re in the head and neck clinic, you see all sorts of people who have clearly had head and neck surgery (or are waiting to). Head and neck people, I’m not judging you, I’m not pitying you, but wow. When I see what some of you have clearly gone through/are going through, gee do I feel lucky. I mean I don’t compare these sorts of things, not really. Everyone has their different struggles and everyone can find things about their own case that they are grateful for (I’ve written about this before). But I just want to give them a hug. I mean that would be terribly patronising if I did, but I give them a smile. And I hope they can see in my eyes that I mean it, and in some ways I get it. And please to all you who are struggling out there too, in whatever way, I want to give you a hug. Next time you see me/if we ever meet, let’s hug. It won’t cure any illnesses, but it’ll be a reminder that we’re never alone. And I care deeply about every one of you. I have a lot of love to go around.

Anyway, Deepti wasn’t in which was super sad because I was excited to see her! But I’m pretty sure she said she would be on holiday around now, so bloody good for her. She has earned that, she deserves that. Hope you’re enjoying yourself, girl!

So. Down to it.

Mr K: So you’ve spoken to the dentist?
Me: no…
Mr K: you haven’t?
Me: well… No…
Mr K: No dentists at all?
Me: ….

I mean I don’t know why he didn’t believe it, he has to refer me to see the dentist… And when I saw him a month ago he said today would be the day…

Anyway, I should be referred in the next couple of weeks. MRI results not in yet but once they are then I should hear about my referral. Apparently it’s not for their normal dentist guy because what I need is too difficult, though I didn’t really understand why. When I asked he said ‘because you can see the bone there and the soft tissue’. Ok… Were you not expecting bone? I mean you put it in there… I think… I was napping at the time so can’t verify but it is the commonly held belief.

I wish I’d had Deepti there to explain things to me properly. Mr K said ‘you know how we were waiting for it to shrink? Well now it’s shrunk too much. We need to get teeth in asap’. Do teeth stop it shrinking further? In which case… It’s going to shrink a lot more before I get teeth because they’re going to take a while… When I asked what he meant about it shrinking too much and that I had been concerned about that he said ‘teeth will help a little bit’. And that was the end of discussion.

It was all a bit confusing (standard). So he was surprised I hadn’t seen the dentist yet, but he can’t refer me to the dentist until he’s got MRI confirmation next week. And it’s been left too long and it’s shrunk too much. But when I saw him a month ago it was too soon and he said he would refer me now. And he glossed over the ‘shrunk too much thing’. And when I said I had been worried about that and worried that I would always look odd because of it and he said ‘teeth will help a bit’.

I mean I guess I knew that teeth wouldn’t really fix it. My face has sunken a lot, my nose has pretty much collapsed in on the right hand side of my face because it’s so sunken. So is that my life now? Deepti said previously never to say that, though is this the one time I should?

I love how seeing your surgeon leaves you with more questions than you had before.

But the main point I suppose is that once they get the MRI results, they are moving on my referral, so… That’s what I wanted I guess… I guess looking ‘a bit better’ is all I could really hope for but it was hard to hear. I guess we’ll wait and find out.

Oh I should probably also say… I had Oncology clinic today too, and the chest x-ray was clear. As expected. So that’s something. I’ll let you all know once I get more news. Bit of an anticlimax, I know.

I had a little cry about it all, but I’m ok. I am. Things are going well, really. But that doesn’t mean it’s not hard to hear some things.

Happy 70th birthday NHS

It is the 70th birthday of the NHS.

Where to start? I suppose with something that’s obviously close to me.

Looking at cancer alone – 50% of people get cancer. That means you, and your mum. Or your partner and your dad. Or your sister and your best friend. I know of people in the US who couldn’t afford treatment, or who have gone into hundreds of thousands of dollars of debt. I wouldn’t be able to afford that, would you? Even in Australia, when my father got an MRI checking his prostate cancer, he had to pay $600/go and that’s on top of private health care.

Even just looking at MRIs… I have to have one every 2 months. No way could I afford like £400 2 months, and that’s just for maintenance scans! Who even knows how much everything else would (have) cost.

Thanks to the NHS, I’m not forced to go into ridiculous amounts of debt just to have a chance of staying alive. The beauty of us all paying that bit of tax to the NHS means that anyone can get the treatment they need regardless of whether they manage to have a job that gives them lots of money. Their fate will not be sealed by their pay check. And it’s there for when the rest of you need it.

And I haven’t had to settle for a sub-par surgeon or someone who isn’t a specialist in my area, I’ve been able to get the surgeon I need, in fact one of the best.

When I was diagnosed, some people asked me if I would move back to Australia for treatment. This confused me a lot. Why would I decide to leave my life and the country I want to live in just because I have cancer? There’s no need to necessarily give up on life just because you have cancer (not for me anyway, I know everyone’s cancer is different)! What a depressing thought that I would suddenly quit everything of the life I have built and want to live.

But that aside, why would I want to go back to a country where you’re not looked after? Where you have to fend for yourself and if you’re not rich you must go into a lot of debt to have a chance of life? I say this with not a lot of knowledge how it would be to have my cancer in Australia, maybe you can get some funding to help and maybe Medicare can help with some. But going off my dad’s experience, it is no NHS.

And the people who work for the NHS… they are the most heroic people. The doctors and surgeons are making miracles happen, the physios, anaesthetists, radiographers, therapists (ok, I’m not going to go on naming all the types of professions in the NHS, if you’re one, you are the best) are irreplaceable, the nurses are absolute angels, even the people cleaning my room when I was in hospital brought me so much joy.

Sure I’ve had moments where things haven’t been great. I’ve had blood work lost, I’ve waited in a room in A&E until 3am waiting for a bed in a ward whilst in the absolute worst of my neutropenia and illness during chemo (but they did manage to find me a private room eventually), I’ve had dentists ignore my cancer (though to be fair they were NHS but made me go on private to get an appointment quickly), I’ve had doctors forget to come around and discharge me from hospital, I’ve had doctors in hospital causing me unnecessary pain and discomfort when they thought they were doing the right thing but didn’t take a moment to think… but it takes time to go through my memory to find bad moments, and they are only a small handful of thousands of fantastic ones.

I feel like people who complain about the NHS are those who haven’t needed it yet. Or even if not, I know there can be bad experiences in anything. But the amount of people I know who the NHS has saved…

The NHS makes me proud to be British. Growing up in Australia, I never felt Australian, I knew I was British. And from the first time I stepped off that plane in London 3 years ago, I knew I was home. I don’t feel like I could ever leave. There are many things that make me proud to be British, and a few things that don’t, but above everything is the NHS. This is something so important, special, necessary to our lives here. It underpins everything, looks after us, and it’s something we’ve helped create. What a fantastic thing. I know it struggles, I know more needs to he done to help it out, I have no suggestions of how to help it, I wish someone did. But I do know we need to protect it, to keep it alive.

Happy birthday NHS. I think everyone who has ever worked for the NHS in any capacity can really take this as their own personal celebration too. From the people who used to drive blood donations around from the donor to the receiver whenever needed before refrigeration existed, to the clinical trials which ended up saving lives, to the doctors working long shifts to make sure everyone gets seen and we all live.

We thank you all. So many of us are here because of what you’ve done over the years.

Happy birthday. Have a champagne, NHS, you deserve it. But don’t let your hair down too much, because we need you, every second of every day.

I wasn’t lying when I said the hard bit was yet to come

I had to go in today for photos so they could build some 3D models of my jaw for surgery. Super cool.

The photo guy was really nice. Though he confirmed a few of my worries to be true.

The surgery recovery will be huge. Really huge.

It will be at least a year before I have any teeth. Just a nice gummy gap in the meantime. Talking will be difficult. Living will be difficult.

What do you do with that information?

I went and got coffee. Seemed a good place to start…

The slightly harrowing lead up to my diagnosis…

Something I haven’t written about here yet is how it came to my attention that there was something wrong with me. I know I’ve spoken about a dental specialist breaking the news of the big C-A-N-C-E-R word to me, and I obviously have a big lump on my face. But it had to start somewhere. And everything has a story behind it.

If you are squeamish about teeth… well… I don’t think this story is too bad, but perhaps proceed with caution.

I noticed pretty suddenly (i.e. within a couple of days) that quite a large lump  had appeared in my upper front jaw, just below my nose. I figured going to the dentist was the way to go, so I booked an appointment.

The first thing he did was to tell me it was an abscess and ask me when I last had a root canal in that tooth. I looked at him puzzled and told him I have never had a root canal. He didn’t believe me, and told me so.

Now I love my teeth. I take very good care of them. I think teeth are so important to the way you look, feel, act… My teeth are precious. No I have not had a root canal, thank you very much! I’ve always taken good care of my teeth! I couldn’t think of anything worse than having bad teeth!!

Still not believing me, he ordered an X-ray to prove to me that I was wrong. How on earth he thought you could forget a root canal is beyond me.

Sure enough, the X-ray came back and showed that the tooth had never had a root canal.

He then proceeded to ask me when I knocked the tooth – when I fell over, or hit it, or was playing a ball sport and it got damaged.

Once again I told him there has been no impact, my tooth is fine, there’s just something going on in my gum. He instructed me that my tooth was in fact dead, and then he proceeded to push the chair back and tell me that he would take the nerve of the tooth out now, and I would have to have root canal later, done by a specialist.

I was in shock. I didn’t think my tooth was dead, how would my tooth be dead? I tried to protest, I said maybe I could get a second opinion first from this root canal specialist. But I was already leant back in the chair, his hands were in my mouth and the injection was done. No second opinion for me.

So I lay in the chair, tears streaming down my face, while the dental nurse held my hand. It was painful. And I knew I didn’t have an abscess or need a root canal. But then again, who am I to say these sorts of things? He was a dentist, I was just having a little panic attack because of the shock of it all. He would know.

He finished up hollowing out my tooth and taking out the nerve, and tried to cut into my ‘abscess’ to drain it, but with no success. So he prescribed me some antibiotics and referred me and my poor tooth to the root canal specialist. I left in a lot of pain and shock, and £50 poorer. Yes, I got to pay for that lovely treatment.

Two days later we went along to the root canal specialist who looked at the tooth and said ‘oh yes it’s dead.’ (Well of course it’s dead, idiot, your mate removed the nerve from it). He said there was nothing he could do until the swelling went down, so he cut into the ‘abscess’ deeper to try and drain it but once again to no avail. He gave me a temporary filling and said to go home, finish my antibiotics and go back in a couple of days. Another £50 for that privilege.

I went back a few days later and the first dentist saw me. He was surprised that the swelling hadn’t gone down at all, and decided to refer me to the specialist at Guy’s hospital, just in case. About the only useful thing they managed to do. I left with another script for antibiotics, and the instructions to go home and wait for my ‘urgent referral letter’ to reach me in the post.

The other thing the root canal specialist said was that as soon as it got any bigger, I had to go straight to the Emergency department at the hospital, and they would do an emergency procedure to cut in and drain the abscess. Now that’s stressful! Constantly having to gauge if it’s any worse and then being ready to run to the hospital if it is!

The lump was on the front of my face, as well as on the roof of my mouth behind my teeth. And of course it got bigger. So one afternoon I went to Emergency, as requested, and they looked at me like I was an idiot and said there is absolutely nothing they could do. They touch nothing within the mouth, that’s a dentist’s job. Um… ok… I swear the dentist told me to come here. According to the nurse the dentist was lying and needed to get his facts straight.

About 6 weeks or so after this ordeal started, I finally had my letter and booked my appointment at Guy’s Hospital.

This was when I met the lovely Dr. Sproat, who whisked me away for scans and managed to get me in for a biopsy on the same day as my appointment. A week later I was back to see him, he was telling me the results and I was relieved and happy to have some idea finally about what was going on.

If there were any confusion before, yes now, after the work of the first dentist, my tooth was dead. He killed it. I had it confirmed later that the tooth had not been dead beforehand, this was all unnecessary.

So now I’ve got this sore, temporarily filled front tooth, which means I can’t bite into anything hard.

I suppose you can’t expect an every day dentist to know how to spot a very rare cancer in a very rare location. I suppose he did everything he could, everything within his realm of expertise. You just wouldn’t expect them to do work if they’re not sure what the problem is. I don’t know if there’s anyone to blame. It’s just a series of unfortunate events, culminating in a cancer diagnosis. Some people end up in hospital when they find out they have cancer, organs failing, and operations done. Mine wasn’t too bad in the grand scheme of things.

Just makes you wonder, with cancer being so prevalent, why is it not more in the forefront of people’s minds? But then again mine is rare. So who knows. How could they have known? I just wonder if the dentists had listened to me in the first place, maybe we could have avoided all of this? Oh well. It’s done now, and it’s not too bad really. No use crying over spilled milk. Or murdered teeth.