I have tried to answer questions that I thought about before I had the operation and also questions that I still ask myself - hopefully some of these may help you. If there is anything that I am not answering here, then please, contact me and I will answer you directly.
- Is it easy to take out and put back in again?
Yes, no problem - once you get used to it. When I was first shown how to do it, the nurse held a mirror up in front of my face, at this point I had never looked into my mouth, I wasn't ready to see the hole that was left from the Cancer - I pushed the mirror away and didn't want to see. It took a few days to come around to it, but I did eventually look and it wasn't too bad. From that moment on, I had no problem in cleaning both the Obturator and my mouth and hole.
It is REALLY important to keep clean - I know this perhaps is obvious, but you don't want to have an infection - keep the area clean, try and clean three times a day, that was what I was told, this is what I have done and to this day I have had no infection (not that I have been aware of anyway).
Watch a video of me taking my obturator out - see for yourself!
- Does it hurt when you have casts done for the next obturator?
Firstly, I think they only do one set of casts for the definitive obturator, or certainly for the first definitive obturator, everything prior to this, unless you have problems with your mouth through radiation treatment or natural tooth loss through decay. It does hurt, or it did for me as they need to get a good cast - you want it to fit snug. If it does hurt you, don't suffer, but have in the back of your mind that you only need to do this once - no pain, no gain!
- How many obturators will you have?
Well, I had the very first one which was put in at point of surgery, then I have the one I have right now (August 2012) which is a big step up (see my obturator page for more info) and now I am awaiting the build of what they call my "Definitive Obturator". This will probably last me for a few years, then I will have to have another one made. So the answer is, MANY!
- What is the point of an obturator?
It allows you to speak, eat and drink and to feel more like you did before the operation. Without an obturator I think it would be next to impossible to function properly. I certainly can't speak very well without it in, no one would understand me. Liquids that I would put in my mouth would end up flowing out of my nose and swallowing food would not be a pleasant experience.
- How do you clean it?
Thoroughly! I don't mean to be sarcastic, but seriously, clean it like you would a babies bottle - If you keep infection away, the sooner you will heal and get a new obturator, well this is how I think. Check my obturator page for more info.
- Can you talk without it?
Yes - question really is, will you understand me when I do? Probably not. It is a very strange feeling to speak without it in, it just sounds really really weird. So I guess the answer is, NOPE not really.
See a video of me talk without my obturator in.
- Do you get used to having it in your mouth?
Simply - YES. I was really worried about this, spent many many hours thinking about it before my operation and then many many days after the operation thinking that I couldn't cope. After a while, it becomes as if you have always had it, sadly it does, remember how my mouth was is a distant memory. Let's face it, you feel it all the time, it's odd, it is a constant reminder of what's happened to you, but, it is ok.
- Why me?
I asked myself this a number of times - I came to the simple conclusion: Why not? Point is, it can happen to anyone, there is no reason - it's nothing you have done in the past, you don't deserve it, no one does. Don't accept it, I still haven't - but don't waste time thinking about it. What's done is done.
- Will I ever be cancer free?
I can't answer this, even today. In my mind I think I will ask this question until my demise - problem is, I never had Cancer before this, I could never get cancer, I was indestructible and then I wasn't. I'll always be a little scared I'm afraid. I hope to one day live without fear of cancer, but I doubt it. Best, perhaps I think of it less and less.
- How do I cope with this? I don't think I can deal with it!
You cope - you do, you have to and you will do. Definitely. How do I know this, well I thought I wouldn't cope initially, I'm not strong, I'm not special I just learned to cope. It is amazing how adaptable humans are. Throw anything at us and we adapt. At first it will be awful, it is a lonely place inside your own mind, you will question everything, you will cry and you will be angry - and then you adapt. You move on, you live.
- Do you fear it coming back?
Sadly, yes. Not that it necessarily will of course, there is nothing really to indicate that, but once you have had cancer I think forever you live in its shadow - I personally hope that I can just get the time in-between thinking about it to be longer and longer. I'm always scared though.
- How often do you have to go to get checked out?
I have to see my consultant every month in the first year, every other month in the second year, every three months in year three and so on until year five. Quite a bit. On top of this you have to have your mouth checked out and the obturator built, which can run into 10's of additional hospital appointments.
- Can you ever forget about what has happened? Will things ever be normal again?
Probably never - however, you learn that you have a new normal and you get used to it. I promise, you get used to it. It's a massive deal - people don't realise what's happened to you - only you, I and others that have had it done will know. This is also why I wanted to create this site, so that you know there are others that are like you, normal like you, normal like me and others. It's everyone else that isn't normal! :-)
- NEW - Video from my surgeon, Mr Ceri Hughes, explaining about what a Maxillectomy is and other very useful information! Watch it here.
- How long is the operation?
My operation was about 4 - 5 hours. I think it all depends upon what's happening to you, how they progress in theatre and if there are any issues that come up. Just remember, you'll be asleep, so you won't give a hoot!
- Does it hurt afterwards? What is the pain like?
it didn't initially - whilst in hospital I don't remember too much pain at all. But for me, and this may only be me, I had real trouble when I got home.
About 8 days or so after my op, I would get up in a morning and within half an hour I would have some serious pain, on the inside of my cheek. I'm talking about proper pain, debilitating pain that stopped me in my tracks. I would take pain killers that were prescribed to me and wait, eventually the pain went.
This went on for a few weeks, until the skin and area inside my mouth healed. It doesn't mean that you would experience this, but if you do, please please think that it is temporary, because it is. The pains eventually goes and you get through it.
- Do you look different?
Perhaps - I do a little. My family will say I don't but I notice some change. Having said that it is minor for me, I notice that my mouth is slightly up on one side and that my cheek is puffy, although this could still be healing. It could be worse for me if my surgeon needed to cut my face - in the end, I was very lucky I think.
- What does the hole inside your mouth look and feel like?
Well, at first, it looks pretty damn weird. In fact, at first I didn't want to see it. Now, it looks normal to me. I suppose it depends on what you are having done, but I can see up into my nasal area, I can see the end of my eustachian tube - I find it interesting now. It will always be difficult to start with, but gets easier and easier as time goes on.
- Does your face sink in now since you have no jaw and teeth to push it out?
You would think so, but actually no. Strangely enough, if I hold still I look pretty much normal to what I did before. If I breath in through my nose with my mouth shut, then the suction pulls my face in. But seriously, no one will see you like that except the people who love you and they won't care. In fact, it's a party trick now, because if I take my obturator out I can push my finger onto my cheek (from the outside of course) and my finger disappears into the side of my face... highly amusing, to me anyway.
See a video of me with my obturator out, see for yourself what happens to my face!
- Are there any side effects from having this done?
There could be - I think all cases are individual, some people will have none, others may have many. For me, my face and nose and lip was totally numb to start with, as I write this (August 2012), five months post op, that numbness has gone but I still have an area which is numb. it does not have an effect on me, you wouldn't know to look at me - only I know it.
TRISUMUS - lock jaw. Sadly I think most people get this - basically it is muscle scarring from the operation on the muscle that allows you to open and close your jaw. As it scars, it shortens the muscle and as such you can't open your mouth as wide as before. Now, it may only have a temporary effect on some, it maybe hardly anything - for me, I think I can only open my mouth to approx 30% of what it was - this is just enough for me to eat and drink and get my obturator out.
I have a blocked ear, this is probably due to the operation but no one can say for sure.
All the above are ultimately ok, if I couldn't live with them I would seek out help and I probably wouldn't feel like writing this! Everyone is different, I hope if you go through it, you will be fortunate to sail through and have nothing to report!
- Are there any scars from the operation?
Not for me, however, sometimes the only way they can get to your top jaw is to cut through your lip, which of course will leave a scar, but these days, I think they do a good job of sewing you back up with the least amount of scar showing.
Eating, Drinking and Speaking
- Can you speak properly?
I can - I don't know if you will be able to. What I can tell you is that I have ended up speaking so much better than I imagined. One of the problems with a Maxillectomy is that the roof of your mouth is altered, i.e. it is removed (or part of it is). You can't speak without it, the sound bounces off the top and out your mouth - when there is nothing for the sound to bounce off it doesn't sound right. You can sort of talk but it is very difficult.
This is one of the major points of having an Obturator, not only does it stop things going up into the empty space, it actually allows you to speak ok. I was worried before the op, I was worried after the op as it took a bit of time to get used to it and I did sound awful.
But it's fine now - I notice it a little, and if I am speaking for a long time I tend to lisp a few words, but no one would know. As I write this I still only have a temporary Obturator - so who knows, it may get EVEN better when I receive my definitive one!
The key to it is without doubt the fitting of the Obturator - if it fits tightly, then you will be speaking much better than if it is loose.
Watch a video fo me with my obturator in and what it is like when I take it out!
- Can you eat and drink?
Yes yes yes. Although it can be difficult at times, as time goes on (I'm writing this 5 months after surgery) it just gets better and better. I am/was a real foodie, loved all sorts of food. It was a real concern for me that I would have problems eating, or probably more so what I could or couldn't eat. Strange thing is, after it all I wasn't that bothered. I didn't eat for 2 weeks after the operation, simply because I couldn't.
You adapt, you eat what you can and as time progresses you eat more and more different things. Eating out can be a problem as you need to know that there will be something on the menu you can manage - but again, as time goes on this gets easier.
- Why does food and drink come out of your nose?
Simply, there is part of the roof of my mouth missing, which would normally stop things going up into your sinus and into your nose. Food as such won't come out, at least I don't think so, it's not like a potato is going to come out of your nostril at a family dinner! What happens though, is liquid, anything liquid can get up there and find it's way back out.
The good news is - firstly get the obturator to be a nice tight fit, this is number one. I'm sure your dentist/consultant will do that.
Secondly, you learn to change the way you do things. So for example, when you are really really thirsty, you would normally tend to gulp down water - if I do this, guaranteed it is going to come out of my nose. However, if I drink carefully I ensure that none of it washes over the top of my plate and as such doesn't come out of my nose.
You'll learn to do that and I can honestly say I never have a problem now. When you first eat and drink it will happen to you, but as time goes on you find your own way to manage liquid in your mouth so that it doesn't happen so often, if at all!
- Have you lost your taste?
A little bit - at first a lot I think, things that were good before tasted funny - may have just been my mind, not sure. But because food now doesn't touch the roof of my mouth (yep, ain't got one for it to touch) things don't quite have the same sharpness to them, if that makes sense. Things still taste good though - just not quite the same.
- Have you lost your sense of smell?
No - not sure you will unless you have serious surgery to your nose.
I won't of answered everything here, so if you want to ask anything please just fill in the form below and I will get back to you!