Hi Nicola,

Good to hear from you again.

I am sorry to hear that you have been a bit down over the last few days. I have to say though that this is completely normal and you would be even more than 'super-human' if you did not go though such feelings. I have had exactly the same experiences and would find myself feeling down and depressed on occasions. The question 'why should this happen to me' is a natural and obvious one. The answer is that these things happen to some people and it's our bad luck that it happens to be us.

I'm glad that you've decided to have the PEG tube fitted - that was a wise move. Hopefully you won't need it but there is a real chance that you will. In relation to the fitting of the tube - this is absolutely nothing to be concerned about. There are two hospitals near me that I could have gone to, one doing it in a day and the other requiring an overnight stay. Unfortunately I ended up at the latter but even then it really was a piece of cake (cake being something that won't go through the PEG though). The operation is very straightforward - I went to sleep and when I awake - hey presto, I had a PEG! The hospital staff show you how to use it and when it's not in use it is just secured to your body with a bit of surgical plaster. I have cycled and even run for several miles with mine (obviously before the treatment side-effects kicked in). I am told removal of the PEG is even more straightforward. I have been using the PEG for all food, drink and medication for several weeks now and it really is not a problem.

Like you, I had to have a tooth removed before the mask was made. The tooth removal was just uncomfortable rather than painful. As I said last lime, the making of the mask is not an unpleasant experience - it is absolutely nothing to be concerned about.

Nicola, sometimes I think it is best not to think about all the various aspects of the preparation and treatment at the same time. That then makes it all seem overwhelmingly scary. Take each stage and procedure as it comes - each is easily managed on its own. Before you know it all this will be behind you and you'll be able to get back to 'normal living'.

Feel free to ask anything you want.

Best wishes

Simon

Hi Simon,

More rubbish news yesterday at the hospital. My consultant recommends that I have more teeth removed. I've already had two wisdom teeth out but that was during my operation so thankfully I was unaware but now I need a further six teeth removed. Another wisdom tooth and five other teeth all on the side being treated. Some top and some bottom. I know it's not the end of the world but its just another thing to face. I will be knocked out so again unaware, but I don't like the thought of losing so many teeth. Apparently there is a chance they could need removing at a later date and the problems would be far worse then due to the damage caused by radiotherapy. It's my decision which makes it harder. Part of me says to trust them with their knowledge and experience and have the teeth out. But part of me thinks what if I'm not one of the unlucky ones who gets problems later? So it's a hard one but I'm leaning more towards going with it and having the teeth out. We're you also warned of Osteoporosis?

How much longer do you need to keep your feeding tube? Are you managing ok with swallowing some foods now? I have requested that they fit the PEG at the same time as having my teeth out.

I have taken on board what you have suggested and I'm trying not to think about everything all at once, that was good advice. I need to face it all bit by bit.

This is horrendous and I feel like I'm living a nightmare. I'm still fairly young and although I'm not vain, I am starting to worry how I will feel about myself and how I will look after this nightmare is over.

Speak soon,

Nicola

Hi Nicola,

I'm really sorry to hear about your news. That must be really frustrating because you thought that the dental work was behind you. It is made all the more challenging because you are left with a decision to make. In many ways things are easier to deal when there are no choices to consider. My gut reaction is that you should take the advice and have them removed. I'm assuming that the teeth being looked at are towards the back? In any case, the things that can be done with bridges and so on is really quite staggering. One of the most attractive women I know has false front teeth as the result of a motor accident. You would not know from looking at her. The only other thing I can think of is for you to ask for a second opinion - this might mean a slight delay in your overall treatment but it might at least give you some peace of mind. I guess that what will influence you decision overall is the level of confidence you have in the consultant who told you this news and how much credence you put in the explanation. As I say, my gut feeling is that you should go with the advice unless you have any concerns about the explanation and advice given by the consultant. I wasn't warned about Osteoporosis but I have to say that I was surprised that I didn't have to have any more teeth out - my teeth are 53 years old and they look it! The difference between you and me of course is that my cancer is base of tongue (i.e. down in my throat) whereas yours is higher up - I guess that's why your dental situation could be more significant than mine. I am of course no doctor and this is merely my inexpert view.

In realtion to the PEG tube. I am still using mine for all meals, drink and medication. I have been swallowing two or three small mouthfuls of water each day in order to keep my swallow function working correctly. The water goes down okay albeit the swallowing feels a bit lumpy at the moment. Over the past few days I have tried a small pot of cold custard each day. These go down but they don't taste as nice as they ususally would and I can't manage more than one. I tried to progress to a Muller pot rice yesteay but that was a step too far - my tongue is still too sore to deal with anything with lumps in. I can feel things slowly improving each day so I'm hopeful that I will be moving away fro the PEG within the next few weeks.

Let me know how it goes, Nicola. I know that all this is tough but there is another side that you will reach. It is as you describe a nightmare but one day you will wake up and all this will be behind you.

Good luck and keep us posted on how it all goes.

Remember, one step at a time.

Simon     

Hi Nicola,

Just seen your post about your surgeon's recommendation to have more teeth out. Although you say "it's not the end of the world" I detect from your post that its another unexpected, flaming hurdle to deal with (pardon language!)

it's great that we, as patients, get a say in the decision making process about our care and treatments, but I do wish it was more simple, like "what colour curtains would you like round your bed?" I hope that comment doesn't sound too flippant! It's not meant to as I can fully empathise with your situation at the moment.

My 'decision' came last week when I had to decide whether to accept more chemo or not. Based on my age, the additional percentage chance of the cancer not returning if I had treatment, and the Oncologists advice, I decided to go for it! But part of me wondered, would I be a 'lucky one' without it?

Simon is so right about the quality of restorative dental appliances that are available these days.  I used to be a dental technician in a hospital laboratory, making all sorts of appliances from orthodontic appliances to dentures to crown and bridge work. This was many years ago and I know that the world of dental technology has moved on significantly since I was a wee apprentice!  But, I wonder if there is a dental laboratory based within the hospital you attend? Would it help to see someone, maybe one of the technicians, from this department (our lab was within the Dept of oral and Maxillo facial surgery unit) Perhaps they could talk you through the sorts of things that may be available to you after your treatments. I'm not sure about laboratory 'ranking' or titles these days, but back then, my bosses  were 'senior' or 'chief' dental technicians and part of their role was to assist the dental surgeon in the decision making process regarding appliances.

Whatever your decision, Nicola, Garf is right, you will still be (and always will be) beautiful.

Keep us posted, honey. We're all behind you!

Big hugs, Jo xxx

Hi Nicola,

Sorry to hear you've had rubbish news.You are quite right about it being another thing to face and the fact that it's your decission also makes it difficult.

These things take a little while for us to get our heads around and until we have it sorted out in our minds it can seem daunting.

The other advice you've been given by Meerkat is right, dentistry has come on leaps and bounds in our lifetime so I am sure you will still be your beautiful self.

Sending you loads of supportive hugs. You have done so well up to this point Nicola, keep going Hun and look after yourself.

We are all rooting for you.

Annabel. xx

Hi Garf, Simon, Jo and Annabel,

Thank you so much for your up beat replies.  I can feel that you are all rooting for me and I really appreciate it.

I've just spoken with my MacMillan nurse who went over all of the details again for me. Apparently the condition is called Osteoradioperoosis and not osteoporosis as I originally said! It's damage to the jaw bone and soft tissues within the mouth following radiotherapy. If the teeth are not removed now, there is a high chance the teeth will need removing in a few years from now due to jaw bone and teeth damage from the radiotherapy and if that's the case, healing after teeth extraction is a lot harder and very painful. If the teeth are removed before radiotherapy, the wounds can heal a lot easier. I may or may not get problems later with these teeth, no one can say for sure but from looking at the x rays of my teeth now, they recommend that the teeth be removed. I can only assume this is due to them finding that perhaps my teeth and gums aren't very strong or perhaps there is some decay there already? I have been in touch with another patient who is of similar age to me and went through the exact same treatment and operation last year with the same consultant and surgeon and she did not require her teeth to be removed. Of course everyone is different but I'm confused how she got away with keeping all of her teeth so it must be that my teeth look like they may not handle the damage so well. There is a chance I can have false teeth later on, very glam! But never the less, I've opted for the teeth to be removed. It may be done as soon as Monday of next week - eeek! I thought I had more time to prepare and I'm more afraid of this than I was the huge operation I had a few weeks ago. I'm trying to gain weight before radio and chemo begin but it will be difficult to eat after the teeth being pulled out    and this extra procedure will delay treatment slightly. I really want the radio and chemo finished by Christmas so I can enjoy Christmas with my daughter, I really don't want to be going in to hospital on Christmas Day, fingers crossed!

Simon - My Oncologist still thinks I will not need a PEG but I am pushing them to let me have one. I would rather have it to be on the safe side but they think I will be able to swallow on the good side as they are only treating one side of my mouth. I'm not convinced by this though so that is still up in the air. Apparently I will be sedated (if I do have the PEG) and not put to sleep during the procedure but it does require an over night stay in hospital. They say this can not be done at the same time as the teeth extractions. I was hoping to get it all done in one go seeing as I will be knocked out for the teeth procedure. I hoped you may have been able to swallow soft foods by now, but as you reminded me, yours was base of tongue so a whole new story and understandably would be a lot more difficult to swallow. Gad to hear you have managed custard though! Can you try soup? Do you have any idea when you may return to work?

Jo - I have been having regulator contact with the Maxillo Facial surgeons, they are the ones who carried out the big tongue operation a few weeks ago. They are all lovely and I'm confident that I'm being looked after very well so I trust them completely. They have assured me they will be seeing me regularly for a very long time once all of this treatment is over which fills me with so much confidence. What a huge decision for you to make regarding your chemo, it must have been a tough one for you but I would agree that you have made a good choice. Take all the help on offer to be sure you throw the book at this thing. You have come so far and it would be shame if further down the line you find yourself wishing you had made a different decision. You have dealt with so much, so you may as well go the whole hog! (Not meaning to sound flippant either!).

Garf and Annabel - thank you both for your kind words. I feel afraid more than angry but I know I will deal with it. I think if I wasn't alone and I had a partner to face all of this with me then I wouldn't feel as afraid. The prospect of ever meeting someone again with all of this history, scars, false teeth etc at my age worries me but what will be will be I suppose.

I will keep everyone posted.

Nicola x

Hi Nicola,

Go for it girl. You know deep down that it is all for the best. You won't have any trouble meeting people and having relationships just because of this experience. It all seems so overwhelming at the moment (because it is) but come next spring all this will be a distant memory apart from the regular check ups. Please believe me, once all the dental work has been completed and things have settled down life will slowly return to normal and the fact that you have had dental work done will not impact on your life.

I have not progressed to soup yet because my tongue is still very sore - I have some in the cupboard ready to go and I can feel things getting very slightly better each day so maybe one day next week I'll try some soup. I'll try my PEG meals sometime soon to try that out - they are actually nice (no doubt because they are so high in calories) especially the vanilla ones.

One step at a time Nicola and you'll get there.

Best wishes and good luck - we're all behind you.

Simon

Hi Nicola,

I feel such a numpty! Of course you will have been treated by  the Maxillo Facial team! Many, many years ago when I worked in the lab within the oral and maxillo facial unit, obviously, operations like yours were being done by the consultants!  (Along with more ordinary dentistry that was too complicated for community dental practices to carry out like tricky wisdom teeth etc!)

I'm going to play the 'post anaesthesia brain' card! Hehe! Next week, I'll be able to use the 'chemo brain' card!

Hope you're having a good day.

Take care, Jo xx

Hi Nicola,

It's Annabel. Nicola from the time of your first posting I have been trying to remember a book I read about someone who went through the treatment for your condition. Being at that age where the brain does not work as quickly or efficiently as it used to it has taken me until today to find the book.

I am happy to send you the book if you would like it or just give you the title. i don't want to do the wrong thing by you and I wouldn't want it to upset you.

I found the book interesting and inspiring but then I haven't had to go through what you or this lady have.

Let me know if you are interested or want to chat in private about it.

I do hope you are getting your head around your new circumstances.

Sending you hugs

Annabel. xx