Hello lovely people
I am doing well and despite a little scare and operation theyt found nothing BUT they did discover my airways are now very narrow - and since then I have discovered I cannot open my mouth properly at all. It opens a couple of inches only. Now the questions - is this normal? Will it last or will the effect wear off? Has anyone else experienced it?

I still don't eat properly and rely on the shakes and fortisip. I am eating a bit but most things tase awful. Sugary things are too sugray, salty things are too salty - spicey things are a definite no. All fun. I've never looked so healthy apparently!

Good luck to one and all and I hope I am in more pain than you are

Tony

Dear Anthony,

How we have missed you. So sorry to hear that you have had a nasty scare and am glad it wasnt anything too awful.

As it 'appens, I noticed a tonsil cancer patient on another support group complaining of similar problems opening her mouth. She got a thera-bite (I think you can get on the NHS) and has been using it regularly for a few weeks and is already noticing an improvement.

http://www.platonmedical.co.uk/products/therabite/

Re taste, I think you you will have to be patient, but do keep trying things. Chaz's taste came back in fits and spurts. At first it came and went, but now its completely back.

Take care,

Cath

Hello Tony

I was speaking to Tony & Kathy on Friday before the Walk and Tony said that he had found that chewing gum was effective at improving his limited opening ( trismus ). He wasn't using the Therabite now as he felt chewing gum was more effective!

Best wishes
Vinod

Thanks I will give the chewing gum a go first - its the cheaper option. I don;t see the consulatant again till October but I will ask him about the therabite - but it looks scarey in the picture!

Does anyone know if my throat will return to normal size? They've told me they can only operate in emergencies now because the air passge is so samll. Anyt houghts?

Many muchos gracios and so on. Here's hoping the usual pain thing I always say - bored now by my own cliches!

Tony

Hello again

Good news check up today and no cancer - yipee!

Jaw tighter than ver thoug and chewing gum didn't help - mainly due to the half jaw thing and general pains chewing. Hospital recommended therabite but can't prescribe it as there is no money available to pay for them. Is there any way I can buy one somewhere? I have been given some tongue depressors to use and shown how and that seems okay but if the therabite is better I'd like to give it a go. Could my GP prescribe one? Any thoughts?

All the best and I hope that currently I am in more pain than anyone in the world - wouldn't that be nice? A pain free world? That includes mental pain of course. Is it even concievable? Is that what heaven is? Oh philosophy...

Tony

Hi Tony,

That is wonderful news.

regards

Ken

Hi Tony, I have problems with mouth opening but I think it's just one of those things you get used to. I tried tongue depressers and stuff but found that my mouth soon shrunk bank once I'd stopped the exercise. Hagg.

Hi Tony

You might find the information in the Therabite catalogue helpful.

Thanks for the CD of your songs. Will listen to it next week while driving to work to Bradford from Wakefield - a good hour's attention each way!

Best wishes

Vinod

Hi, Tony
Your "no cancer" is wonderful news!

Is the mouth difficulty a consequence of severed nerves in your case? My doctor told me that Vitamin B might help tor estore nervous connections. I cannot open my mouth as before the operation, but it is getting better every day....

Take care! Shoshana

Hi again

Been using the sticks and now I am in lots of pain with the other side of my mouth - think I'ce set off some problem with a tooth or something. "Ain't life grand" Oh well.
Problem started with radiotherapy and I wish I'd just ignored it now caause this pain is worse. I had this problem before the last bout with cancer but it went away for ages - not its back. It's been waiting in the wings to retrurn! They told me it's not the tooth but the jaw muscles - I'm not sure because it's the tooth itself that hurts.
"Stop mioaning man and take some pain killers"! Good point!

Hope I am in more pain than your are!

Tony

Well just reporting in. Stopped the sticks - got enough to cope with without the pain in the tooth.

Trying to get a therabite through the NHS - you'd think I was asking for several thousand pounds worth of treatement or something - oh yeah I can get that without any issue - but a therabite - no way! It is different in different NHS areas apparently - so some of you lucky people can get them and some of us can't. For you people abroad it would be like some Health insurances covering it and others not - for no apparent reason!

I have been feeling awful - how are you? I've had the flu and even worse a debilitating tiredness and dizziness which means sleep is the only thing I can do productively. Dr tells me it is just a repsonse to the virus - but I am worried - could it be a precursor to something else? No obvious signs in the mouth - though I can hardly see in my mouth these days as it only opens a couple of centimetere or so! so I am being hopeful it is just the virus - but two weeks on and I am not improving. Oh I do like a good moan!

Hope everyone else is well and coping with winter! Brrrrr it's cold!

Best wishes and I hope I am in more pain than you or your loved ones!
Tony

Hi Tony

Viruses can take a good two to three weeks till you start feeling something like again, particularly if you are a bit run down to start with. Hope you feel better soon.

Best wishes

Gwyn

Hi Tony,

Sorry to hear you are feeling pants. Chaz had a nasty cold a few weeks ago and it took 4 weeks to go. Hope you start feeling better soon.

Warmly,

Cath