My Cake Face

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[mycakeface]

4mm

4mm scale, 4mm wetsuit, 4mm single pole connectors, 4mm pony crochet hook, 4mm mdf, 4mm marine plywood, 4mm toughened glass, 4mm knitting needles, 4mm banana plug, 4mm enhancing area of tissues. You’d better be good ones!

[mycakeface]

Sun = hot

It was like a bloody sauna in his room. Poor Maggie the nurse. After stuffing me and The Mother into one of those old fashioned lifts made for ladies of the thinner Victorian variety we arrived on the first floor and went in. The chairs were about a mile away from his desk. I wanted to tuck myself in just as I do at Mr Hunter’s desk when we are having a chat about this that and then other thing, but it was all a bit awks. So we stayed where we were, almost on the other side of the room. Today was the day we had the chat about my latest MRI. Two years and two days post op. We were getting close to reconstruction, no more denture, no more teeth popping out when eating something as simple as a croissant, no more big old gappy gob. All healing is very good. Everything looks normal. BUT. There is an ‘uncertain area’ showing itself on the scan. They don’t know what it is. I don’t know what it is either! A mass of tissue apparently. Sounds pretty harmless. It could all be fine and lovely, but we have to make sure. No point in having a lump of shoulder shoved up there if it’s going to be eaten by one of those bastards… Sooooo I’m still under observation. Another scan next summer… To monitor the ‘uncertain area’ and see what it’s up to. Hopefully nothing. Any reconstruction talk moved to 2016. Who knows. I am glad that I’m being monitored so well. I would just quite like it to be over now. But obviously I’m not ready yet. So I’ll just have to lay off the steaks and keep spitting at people by mistake. In the mean time, I’m looking out for pain and headaches. And swellings. If anyone notices any swellings in my face department please do let me know. I can’t see it and I can’t feel it. I know this as I had rather a lot of marmite on my right cheek the other morning. Good job I have a mirror by the front door… See you in 8 months. X Ps. Mr K is an extremely talented surgeon. I was only too pleased to help him on his path to success by advising him on how to use his air conditioning controls on the way out. Snowflake = cold.

[mycakeface]

All change! Ugh...

So today I had the tooth popped on my implant. This implant is for a tooth that has been MIA for years... Like 15. It's been restored to its former self to help support the other teeth and stop them from breaking down under the strain of the ob. So... Today was pretty pain free. I had some metal shaved off the clasp that touches the new tooth to try and settle my bite. It's ok, but it's different. And when it's different it's a big head fuck... (Scuse me lang) It's nice having a tooth there, eating is different again, my ob is slipping all over the bloody place, and it's just another round of change and getting used to... I'm sure in a few days all will be normal again. The whole face department has been feeling very odd over the last month or so. I can feel a pulse where the jaw bone used to be, so something is active... Top lip is burning, but I'm sure that feeling is slowly coming back. I've started eating rice cakes for luncheon, usually with ham, cheese, mustard, stuff... Nice they are. But with a numb top lip controlling the crumbling is quite amusing. But annoying. So even the tiniest bit of feeling coming back would be marv. Anyway. After a couple of nights sleep (hopefully without the 'I've swollowed my teeth' dream) :( The status will be returned to normal. Looking forward to getting rid of this thing and being able to eat, speak, and do all those other things with ones gob (now now) without even thinking about it. Over and out. ;)

[mycakeface]

This is the news

So I am half way through the implant treatment. I have had a titanium rod drilled into my lower jaw on the good side, to replace a tooth that has been missing for yonks. The implant should give me some more support on the good side and slow the damage to the lower teeth from the obturator. Dr D gave me the titanium rod... (he slit the gum, drilled the bone, shoved in the rod and stitched me up in about 7 minutes.... impressive...) Next week I have impressions for the new crown. Lovely. I'm now 18 months post op. Recently I have noticed the obturator isn't fitting. Speaking is troubling me as I can't move my tongue about enough. Loud places are very difficult. So won't bother with those for a bit...! Pain is also picking up a bit, not sure if nerves are coming back to life or what... Lots of pain round my eye and a bit of dizziness going on again which is quite annoying. My ear is pretty much blocked but luckily that one faces the wall at work so doesn't really matter...! Some news from my chum Will. He has had a bad cough for a month or two and has been sent for a chest CT. He has a nodule on one of his lungs. It's about 4mm. His consultant has him booked for another check in six months to see if there is a change. I'm thinking of him lots and am hoping he is staying positive. Look after yourself buddy. The past 18 months have flown by. Am looking forward to getting the all clear from my next scan (fingers crossed) so I can get rid of this lump of junk from my mouth and start being repaired! What that entails who knows, but I expect straws and my trusty jaw jack will be at the ready... Over and out.

[mycakeface]

One is more toned than the other?!

Today I went to see the Dentist at Dr D's practise. I went for a general check like we all do, but also wanted a thorough look at how my obturator sits in my gob as my lower teeth on the good side feel like they have been getting a bit of a bashing. It did take me back sitting in the chair, seeing all those faces who have been a part of my face off, but I know if anyone can sort stuff, they can... So, I had a lot of X-rays, but very clever ones with what looked like a pen with a light on the end. The pictures popped up on the screen next to me and everything was explained. The 75% of teeth I have left are lovely apparently! However, the bottom ones are showing some hairline cracks caused by me constantly biting down on the metal clasps. That is what I was worried about. I don't want my teeth to break, I want them to stay as strong as possible whilst in this waiting for reconstruction phase.. The dentist looked at my face and could see how the side I chew on was much more toned than the other. The poor other side is not only jawboneless but is also getting a bit saggy! I hadn't noticed myself... I'm due to see Mr K and Dr D in September, following another MRI to talk about the reconstruction options. So far it looks like a bone graft from my shoulder, or implants into my cheek bone. We aren't there yet though so no point thinking too much about it. I was sent for a EPG, which is a scan of the entire jaw. I also had a 3d scan of my good lower teeth, I have had one missing for a long time which isn't helping as I only really chew on one side. They wanted to see how much bone was there for an implant. I was bumped to the top of the list to see the radiographer as I am special apparently... and soon had my head clamped whilst sitting inside this machine that felt like it was up halfway up the wall. The scan took a while but when I went back to the chair to see the results on screen, well... It was a bit of a shock! We looked at the scan I had a month after the op, and compared it with today's, and a whole heap of bone has grown back!!! There is still a big old hole up there, but the more bone I can grown the less shoulder they will have to nick. I was gobsmacked. Literally. And so was the Dentist! The scans were sent up to Dr D who left his operation to have a look... He was amazed. The scans have now been sent off to mr surgeon Mr K. Maybe reconstruction will be postponed for a while, see if I can grow anymore. I was completely over the moon... Absolutely thrilled. But I am going to start giving my dodgy side more of a workout. Nobody wants a saggy cheek now do they!

[mycakeface]

Pain in the neck

It's been a while since I last posted. Nothing like stating the obvious. Not much to update you with until now... Weirdly I have had about six migraines in the last three weeks and the most horrendous vertigo. I have literally felt off my face and on a boat in choppy waters with a ten tonne truck driving repeatedly into my head. It hasn't been much fun! So, I am off for another scan. The likelihood that this has anything to do with the old gob is pretty slim according to Mr K. But best to check... The mouth healing is ok. The obturator is a bit of a pain in the arse to be honest... It's ok, but I would rather not have it. It's reminding me and gets in the way of shouting. Not that I shout too much, but talking loudly I find difficult, especially in pubs which are one of my favourite places... So we shall see. I'm going to have a blood test too to check for thyroid/vitamin d/anaemia issues. In the mean time I'm off for dinner with The Mother and The Sister. Two of my faves. X

[mycakeface]

Marachinos.

So today I am going a bit off piste. There is only so much jaw talk one girl can take. I want to talk about the other stuff. The stuff that makes the world go round. Not money, no. Obviously money is all very nice and buys you stuff and takes you places, but it is relationships and feelings and love that keep you going. Love and feelings and friends and family and how we all look after each other when things go a little bit tits up. 

So when my things went tits up, my tits stayed where they were supposed to. It was my mind that went a little doolally. You think you are strong, and most of the time you are. But when something really gets in to your inner most being, and how you think about everything, your entire world shifts. Nothing is the same anymore, everything is different. And it will never shift back. 

I’m kind of back to normal now, but I have to remember the people I have met on this expedition. Some of the stuff these people are still going through to combat what has happened to them is pretty immense. To be strong enough to cope with the surgery, to then face bouts of radiation and not being able to eat properly for months, along with the pain and the emotions that have to be faced, is something that I am very concious of now, when I talk to people about general life, and feeling, and normality. To not have to cope with the pain and the emotions and those dark feelings that overtake you, overtake how you live and what you can do, is something that I will always be grateful for.

Trouble is, understanding what it feels like to have to cope with that stuff, but then coming through the other side, makes you look at everything differently. It makes you realise that life is actually pretty fragile, and that it needs to cherished. Love that word. Cherish. And not because Madonna used it (although she was right) or that it sounds like cherrys (marashcinos - I love them) but that it is so important to. Cherish who you are, where you are, and what you have. And especially cherish who you love. 

Thanks for the fishcake Mother, bloody lovely it were. Where are those cherrys? Do we have to save them for Easter?

x

[mycakeface]

Ch ch ch ch chaaaaanges....

Well, I have been monitoring the old cakehole for the last couple of weeks. I actually had a 'normal' dentist visit last week for a check up. All my teeth are lovely apparently, shame about the ones that are missing. Anyways. I told him about the hole and how it had opened up. He has referred me back to Mr K for another check up. I am sure it is all just to reassure. It is still healing. Sometimes it feels like jelly up there, sometimes it doesn't. I just need to give it some time I reck. It has since started closing up, and I am being extra careful about looking after it to give it the best chance to heal more. 

In the mean time, I can't say how important it is to have a decent check up at your dentist. What I have had is pretty hideous. If it comes back, it will only come back in my jaw. Mouth cancer is horrific, and the longer it is left, the worse it gets. The worse it gets, the more life threatening it becomes.

Check out my friend Will's post about how your Dentist can perform a simple check to make sure your mouth, cheeks, gums, tongue and glands are all as they should be. The sooner something like this is caught, the less radical the treatment. Check out the link below and ask your Dentist for a really good check each time you go.

Six step screening for oral cancer

[mycakeface]

Oh.

So this week has been kind of weird. On Sunday night I gave my gob its usual inspection, with the massive torch The Mother gave me for Christmas two years ago. It's one of those torches you should keep in the boot of your car for motorway breakdown emergencies. Keep it away from your eyes though it could blind you. Anyway. I shone it in. And, well, I had a bit of a shock. The hole was back. It was as wide as a pencil... And it went right up. I thought things were feeling a bit odd as every time I swallowed I could feel it under my nose. Bit weird. I have had my obturator adjusted quite a lot. The top has been chopped off. However whenever I pop it in it really bloody hurts a muscle in my cheek. Like really hurts. I don't think it is quite right but anyway. After a while it kind of feels ok. Again, I am taking it out, and only have it in to eat as I don't like it... I have been checking every morning and evening with the flood light. I've become slightly obsessed as I don't want a hole thank you very much. I didn't have one last week the dentist and surgeon said so. I don't want one now either thanks. But... each day it looks like it is getting smaller.... When I check tonight I am hoping it has almost closed as this is a bit strange to get ones bonce around. I ain't going backwards tvm. Hopefully more rest and less thinking I am totally recovered will help... It is only 7 months since I had a third of my top jaw removed. Chill! X

[mycakeface]

Tomorrow

It is going to be interesting! I thought it would be on Friday, but it is at 2pm tomorrow. So I have been without it today. Almost like I have gone out without my knickers on, but a little less embarrassing (within my own mind) but slightly more spitty (out of my right hand mouth entrance).

So, I will be assessed at 2pm. To be honest, now it's out, I don't want it back in... I am forgetting it, in the mornings, in the bathroom, by my bed, on my desk, in the meeting room... if I am forgetting, surely it is not important anymore?!

We will see. I don't really care if my face falls in a little, I really don't think people who love me will give two shits, and it really isn't that important in the grand scheme of things.

So let's see! If he wants it back in, I need a good reason....!

x

[mycakeface]

:o)

Well bloody phew. I had an MRI scan on Monday, my 6 monthly check up post op. I was shitting myself. So much so that I popped a couple of beta blockers* (well three) and then, to be honest, I was so off me tits I didn't really care! I was in the tunnel for 45 minutes, and had the contrast injection too. 

When I came out, I had to sit down for half an hour as I found focussing very difficult... there was two of everything. Maybe three was one too many..... Work that afternoon was very interesting. And not only because of the self prescribing.* 

Today, I got the results. Well. I was told 'Catharine, your scan is clear'. Clear. CLEAR. CLEAR! Thank you. I wanted to kiss him, but I think patient/surgeon relations should remain separated by the massive lamp and huge desk.

I was slightly concerned as my 'defect' is closing up more and more, to the point that I can tell the difference every day. It is incredible! Must be The Mothers cooking. He had a look up there with his massive lamp. 'Wow'. I got a wow from the Assistant Secretary of the European Association of Cranio-Maxillofacial Surgery. Wow.

I feel so relieved I did a small cry on SB (sorry SB). Can't tell you how relieved I am. Next scan in 12 months. Next sausage eating, on Saturday with Al. I love a sausage. Lets have 50 to celebrate. 

x

*please note, My Cake Face or even me myself and I do not advise self prescription. It is a very silly and dangerous thing to do. Tut tut.

[mycakeface]

Astonishing apparently!

'Well. I am astonished.'

Said Dr D as he shoved his finger up in to my defect. Always makes me feel a bit odd when he does that.

'We said this would happen didn't we, and it has. It is pretty incredible...!'

I had popped in to see Dr D as my obturator had become EXTREMELY uncomfortable. It had rubbed along the edge (or cliff as that is what it feels like) of the surgery site, creating a large and sore ulcer :(. It was uncomfortable to eat and speak, and when that happens, well, things can get a bit miserable. Especially when you eat and speak as much as I do.

Anyway, I had to wait a few days for an appointment, so rinsed with Difflam a lot to numb everything. 

I hopped up into the golden chair, and popped out the ob. What seems to have happened, is that the hole between my mouth and my sinus cavity has completely closed up. It must have been over an inch long, and up to 3/4 of an inch wide after the operation, which meant anything I ate or drank would go up into my sinus cavity, and, if runny enough would pop out my nose! That used to happen quite a lot with liquid, but I found a way of positioning my head so that it didn't happen too often.

Anyway. It seems it has closed itself off completely......

So the question now is, what is this obturator doing for me...

Dr D wants to run a couple of tests. I am going to live without it in my mouth for 24 hours, and then have an appointment with him to see what is happening....  Each morning when I put it in it is pretty painful, and takes about half an hour to settle. Because I love sleeping so much I haven't managed to organise getting up half an hour early to let it settle before eating. Instead I have been chomping on my toast with my jaw in the wrong position to get to work on time, which has meant my jaw joint is now a bit buggered. Oopsie. So I am back to seeing my cranial osteo once a week for her to fix it for me.

Anyways... One thing Dr D is worried about is that the obturator is giving my cheek definition, and that he doesn't want to lose that. Neither do I! After having that stinking bandage up there so I would heal to the right shape I don't want to lose that thank you very much......

So after the 24 hour test, I need to go for two weeks, not wearing it. It will be odd as I kind of rely on it, even though I hate it. If you know what I mean...

I thought I would practise. So this morning I ate porridge without it in. The first time I have felt food on the roof of my mouth for six months. It was like heaven. A bit weird on the right hand side with the gap (previously the hole) which felt like jelly, and very sensitive, but it was ok! Reckon I could get used to that...

So, next step is the MRI scan next week. Am still a bit dizzy, and now the hole has filled up they can't see what is going on so good to have a check....

Then I will do the 24 hour thing... exciting!!!

[mycakeface]

Not only surgeons but TV stars too!

Tonight I watched Embarrassing Bodies. Not to see other peoples issues with their bits and bobs, and when I say bits, I mean their bits... but to see how a chap called Eric, who had lost his eye, roof of his mouth, cheek bone and cheek to cancer, was being put back together by Dr D and Mr K.

Eric had lost half of his face to cancer, and following surgery, had been left with a gapping hole covered only by a dressing. Previously, he had been through re-constructive surgery which sadly had failed.

The TV show had put him in touch with Dr D and Mr K, to create him a prosthetic face and obturator to get him back to normal as closely as possible. The result was amazing. Implants where placed into healthy bone, which provided a structure or 'scaffold' to attach Erics prosthesis to.

It brought a tear to my eye how this amazing duo have helped him. And a reminder how they have helped me too. I am hoping to have some of my own scaffolding in the next year or so, to reconstruct my missing jaw bone and give me my teeth back on the right hand side. My reconstruction is nothing compared to Erics, but I think I can safely say I am in the best possible hands... 

[mycakeface]

Check up number 2

I've just been to see Mr K. I've missed being greeted as 'Young Catharine'. I was sitting in the waiting room, waiting, in the room, for Mr K. On the sofa opposite was a man with red socks on. He had other clothes on too, but its the red socks I remember. He stood up as his pal came through Mr K's door back into the room. 'I've been given the all clear!' Red socks flung his arms round his friend. I was chuffed for him. My turn. Mr K had a good look up me defect. He popped his finger up there which was ODD. Good news is the hole into my sinus has shrunk massively! Hoorah! I may even be downgraded to a denture in a few months, which is amazing news. I am really chuffed with that. I told him I was a bit tender under my eye and had felt a bit dizzy lately. We then had a small argument about who was losing the most marbles... He was asking about my latest scan. He thought I'd had one post op, I knew I hadn't. I know he was only teasing though, telling me to stop being polite for his incorrect information... I knew what he was really doing was playing about to tell me I needed another MRI. Just to check. That's cool with me. I'm sure it is ok, but having learnt from last time, if there is any funny business going on the sooner I know the better. I suppose it gives me something to blog about! Haha! Just need to dig out the beta blockers to control the panic when my head is in THAT cage and I'm being shoved down THAT tube again. I think I will chose the music more carefully this time. Zadoc the Priest didn't really do it for me....

[mycakeface]

Phantom toothache

Well this is very strange... I have toothache. Im my false teeth... It is actually quite funny, and in a strange kind of way comforting as it feels normal! It isn't really causing that much of a problem. The stabbing pains, however, are. They have suddenly got worse. They are in my top lip, up the side of my nose, and in the corner of my eye... it is very difficult to explain - they effing hurt, but are very quick. I think it is the nerve trying to re-generate. My nose, half of my top lip, the actual lip and my gum were completely numb. Now I have my nose back (yay!) and half of half of my top lip... if that makes sense. My lip itself is completely numb. There is nothing there. I could have a red wine moustache and have no idea. But who cares!

Anyway. I think the nerve is doing it best to re-grow/re-attach/whatever it is trying to do. So do carry on...

The other thing is the mouth stretching. I am absolutely thrilled to now be able to stretch my mouth back to how it was in November, before the op! It has taken a while, a lot of excersises, and definitely the treatments from Ana, my Cranial Osteopath have helped. I still have to do some stretches each day but nothing like what I was doing before. Ana has a new site - if anyone needs to see an Osteopath/Cranial Osteopath, then I highly recommend her. Her knowledge, professionalism, and gentle nature make here a true healer. Go and see her!!

anamattososteopath.co.uk/

So I think where I am now is as close to how I was before. And do you know what? It really isn't that bad. I can talk, eat, sing, do whatever I like. Yes it is a bit different, but really, it is ok. It could be a lot worse.

Another really exciting thing that is going on, is the fact that my chum Will has set up a forum for all things maxillectomy and I am a moderator for him. The site is a place where people who have been through similar experiences can talk to each other, share advice, share their feelings and basically meet others and understand that noone is alone when going through something like this. It is just starting up but I feel really chuffed that I am going to be help someone else through their ordeal. The forum can be found here, so if you have found this site but want to talk more then drop by and sign up!

forum.maxillectomy.com/

I am off to see Mr K in a couple of weeks for another check up. Fingers crossed all is ok (I can't imagine why it wouldn't be) but I will pop another post up then. The Mother is just finishing off the Sunday lunch so must go...!

x

[mycakeface]

This is the news

I feel like I have let myblog down. It has been here for me on so many occasions over the past few months, recently I have been ignoring it. So I am putting that right with a quick update from my mouth. Literally...

I now have my new jaw stretching device!! Hoorah. But is has been a bit of a mission to get one...

My surgeon asked my GP to order me a Therabite on prescription as they are pretty expensive.. like.. £400... (ouch). I waited a month for the letter from my surgeon to my GP, only for my GP to refuse. Gutted. I spoke to the practise manager. who advised me that for them to order me the device, I should make an appointment with my GP, so that she could refer me to a Maxillo Facial surgeon (my actual surgeon, Mr K) but on his NHS list rather than private. Then he could write back to my GP on different headed notepaper requesting a Therabite and then they could prescribe me one....

I couldn't do it. This is where the NHS has gone mad... I couldn't justify taking up my GP and surgeons time for the sake of the paperwork, so I went to Sainssburys, gave the pharmacist my sob story, and he ordered me one. Ok, so I have to pay a lot of money for it, but I don't care!!! My mouth opening and general jaw happiness is the most important thing right now.. 

So three days later I received my blue beauty, and I am now up to 2.5 fingers!! Wahoooo!!!

[mycakeface]

Goodbye 2012. You have worn me out.

I am looking forward to Thursday. Thursday (hopefully) I am getting my new mouth!! I am still wearing the one that was screwed in during the surgery (it has since been unscrewed so I can take it in and out) but it doesn't fit very well. It is making my mouth sore, and well I'm over that one now. Having said that, I can't function without it so I'm still quite attached...!

Before Christmas, Dr D took more moulds of my mouth. As healing progresses the shape changes, teeth move a bit, and the obs don't fit after a while. I'm hoping it might have some teeth on it... not to chew with as there is no bone to support them, but to touch the bottom teeth on that side as they are probably wondering what the hell is going on. We will see though. Whatever is is, it will be the best New Years present ever...

I am also waiting for the jaw jack. I am still struggling with opening my mouth. The mornings are the worst. I have to spend a lot of time each morning stretching and opening so I can get some breakfast in. Then before every meal. The excersises are taking up most of the day and I can see some small improvements, but if I stop the muscles just shrink back to what they think are their relaxed position... which means a closed gob for me! Bad times.

So I am being ordered a Therabite (jaw jack) which is the safest and best way to help rehabilitate the jaw. It is tiring me out.. so the sooner the better!

I also saw Mr K before Christmas... he was very pleased with himself as the results of the pathology show he removed all of the rubbish that was in my jaw! He was so pleased with himself we could almost see him wagging his tail... We have started talking about reconstruction - how and when... it looks like it might be sooner than I expected, but we have more meetings planned to talk through so I am not thinking about it too much at the moment... Need to get over this one first!

It has been a very strange end of 2012. I hope noone has to go through anything like this as it is really not that nice. I couldn't have got through it without the love and support of my family and friends, and I can't thank you enough. You know who you are! I will never be the same again, but will hopefully be a new improved version...! 

Here is to 2013 and all the fun and happiness it will bring. 

Katy x