#partial maxillectomy

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...!

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. 

Today we went to visit Auntie and Uncle G. I woke up this morning and my jaw felt very sore, and very stiff. I couldn't open it that much, so spent most of the journey stretching my jaw open with my new implements... 

On Wednesday this week I went to see my Speech Therapist so that she could give me some excersises to help with the jaw opening problem. I have already been doing the excersises that Ana my Cranial Osteopath had given me, and I was interested to see what these excersises were. Well, the excercises took the form of shoving as many tongue depressors between your top and bottom teeth as possible... Nothing else. I thought there would be some neck stretches, some mastication muscle stretches, but no. Just some giant lolly pop sticks.

I didn't mind too much as I was already getting results from the stretches I had been doing. My neck has loosened up nicely now which I think definitely helps.

So I was instructed to visit a 'posh' pharmacy to buy said tongue depressors. Two boxes I was told, I now have 200 of the things.

Wednesday night, I could fit 12 in, I am now up to 17. The trouble is I can't retain the opening, so when I wake up in the morning my mouth has closed up again, and I have to spend half an hour stretching before I can shove some toast in. It then takes a few hours to get it open again. Each morning is getting easier though. My aim is 24, then that should be normal. I will be happy with 22 though but we will see... I am quite determined.

So... I knew that there was a lovely luncheon waiting for me, and I wanted to make sure I could get it past me chops so I stretched away and managed a big enough opening.

Whilst I was in hospital having my face off, G & G were on holiday in Vietnam. What we didn't know was that Auntie G had had a horrible accident, and sustained a very deep and rather large gash to her leg (trust me I have seen the pictures). Auntie G had to stay in 3 different hospitals in Vietnam for a week, the same week that I was in hospital for my gob. As I was having iodine shoved up me hole, G was having it sloshed all over her leg. That stuff really stinks but its healing properties are incredible...

Once I was home from hospital, the Gs had been flown home from Vietnam. This is the first time we have seen them, and I have to say Auntie G is looking very good considering her poor leg! We have both been on a bit of a journey and will be sharing jigsaw puzzles I expect.

Anyway. Uncle G has been a brilliant support and has assumed the role of sous chef. He now makes excellent mash potatoes! Auntie G is still head chef and made a delicious Caponata. They both accompanied a rather large sausage. I was going to take a picture but I thought it just looked too obscene. I mean, this thing was MASSIVE. I'm surprised Uncle G didn't wince a little as he lopped the end of his. Sausage that is. Boar and Apple they were, really bloody lovely, and probably the best sausage I have had in a while! Thank you for a lovely lunch it was really nice to see you both.