Tony, sorry to hear of your struggles. I've been in your boat and thought I'd mention a few things. Speaking as one who has had 66 radiation sessions, and three surgeries (total gloessectomy).

You may be on to something about "rushing" the normal food thing too soon. I had obtained some infections in the lower jaw as it was thought to be caused by particles food trapped in raw tissue areas. So recommending to slow down on "proper" food.

My second thought is to ask for a different drug for pain management. I was provided an Oxycodone that managed well...careful about remaining "regular" with using this one.

That's my two cents. HOpe you find some relief

Bob

quote:

Ulcers on tongue - just one huge ulcer actually - is hell and seems worse than before - possibly down to my eating things I shouldn't.

Hello Tony

Mucositis is very common side effect of radiotherapy ad causes ulcers you can see and others you can't in the throat. They cause a lot of pain. Some things tried by others and found helpful are listed in this previous post. A more recent product on the market which some have found helpful is MuGard. Let me know by PM if you wish to try it.

Best wishes

Vinod

Thanks Bob and Dr Joshi

I must admit mucositis is something I don;t lknow anything about - but that's probably what it is and no doubt people have mentioned it - though there is often so much information my brain does a Homer Simpson!
MuGuard rang a bell as soon as I read it - and wqith aa bitof searching I found some that the hospital had given me. D'Oh! So I am trying it - and it certainly numbs the mouth - which is good.

Hopefully the hospital will confirm it is indeed mucositis tomorrow and will recommend I use MuGuard! I'll let you know.

It has made a big difference reading your two replies - becuase you can feel very alone and scared. The imagination sets in and makes you feel even worse of course - is it the cnacer? Is there a tumour..etc.

Feeling better - still in pain - but more at ease if that makes sense. I have probably been warned of muscositis a million times right here on the site - but oh lok there's asquirrelll! Tee Hee (Homer reference for the non-Simpson minded!)

Hope I am in more pain than you are...

Tony

Well - they never mentioned mucositis but did mention thrush and have givenme Fluconazole. I have no white patches or indications of thrush - so I am dubious it will work. They also suggested an infection of the inner ear - my radiation was right underneath my right ear and I was deaf in that ear for weeks after. I will give these tablets a try but have to go back next week if no joy. The pain is very intense in the ear whenever I eat or drink anything - even water - to use hospital jargon I would be giving it a 9/10 - thankfully it subsides into a 3/4 rumble most of the time and the pain killer knock it down further when they are at their peak. I'm only taking paracetemol and ibroprufen - oromorph at night. The DRs didn;t suggest I take anything else.

I'm just telling you so that I can tell someone - it's of no interest to anyone else - espeacially my family who bless them are sick to death of my tales of woe (as no doubt you are) - but it gets it off my chest! Nothing like a good moan. As my Dad used to say ironically when down "It's being so cheerful keeps me going." And "I'm only happy when I'm miserable."

With that I will now carry on my shake.

Tony

Hi Tony,

Sorry to hear you are back in the wars. The healing process is very unpredictable. I remember getting very anxious when Chaz seemed to be in more pain following rt than during it. I could never work out why he developed a sore throat on the side that was receiving less RT so late in the process.

I happened to notice some historic posts here yesterday about ear problems following rt so I guess its not unusual. hope its just an infection and the antibiotics sort it out quickly.

Word of warning - I had to take Fluconazole recently for teeth problems and I found it did very strange things to my stomache. Hope it doesnt do the same to you.

I am sure your family aren't sick of your moans and groans. I think its very difficult for carers to strike the right balance between showing they care but not appearing obsessed by their loved ones cancer and treatment battles.

Try and concentrate on the song writing :-).
Cath

Hello Tony,been having a catch up this morning and read your post .My Paul's ear took a huge hit second time round and his left ear is now problematic with ear infections every few months .He was told to put cotton wool in before he had a shower to keep it dry this does help as when water from shower gets in ear canal which has ben damaged it does not drain away as it should and lies there which eventually causes an ear infection ,so worth a try .When you ear flares up you will feel pain in eating and drinking and insome cases the ear can discharge .You will soon be aware of this and know when you need an antibiotic to get it sorted before it gets out of hand.Your thoat will become sore quite often off and on for a good while and it is best to keep foods soft as throat area is very tender and will take a long while to heal .The thrush you mentioned is also very common and can be quite far down so white patches will not be easy to see and usually you feel a little tired and out of sorts with this, sometimes a sore throat and a tickly cough.if it gets a good hold can make you feel very sick.

The fluconazole works well and Paul was on that constantly on and off for 6 months post RT and is back on it now plus anti biotic due to a recurrent ear infection which seems to always trigger the thrush in his thoat and if not dealt with quickly then errupts in his mouth with more ulcers etc .We have always found a weeks course is never enough and now always use it for 2 weeks .Paul has never had any bad reaction to this and usualy prefers it in solution form as opposed to tablets .

Hope things settle down soon and you start to feel on the mend again soon.

Hope this of some help.

Bell.

Thanks Bell & Cathy S

Looks like I am in for more fun ahead then. The pian is dreadful and what you describe Bell is spot on, so I guess that's it. I will just have to try and stop moaning and get on with it but real food smells so good and I am starving.

My GP tells me I could still lose wieght without anyone panicking too much and it will do me good in the long run ; the hospital tell me to maintain my weight. I just want to eat. Caught between food tasting awful and the food I want to eat doing me harm. A rock and a hard place.

I told the Radiotherapy chap that I am writing a song called "Radiotherapy Fun" which I had to point out was ironic. The surgeon then asked could I write another called "Sunny Surgery". I will. And I will post them somehow when finished but at the moment singing is difficult due to the tongue ulcers and the throat,

Hope I am in more pain than you are (or anyone in your family),

Tony

Tony ,trying differet foods will do no harm you just need to be more realistic with textures .I put full meals in a blender like mince, sphagetti bolognaise especially blends well to gether and add a little double cream at end .Paul says it tastes great ,I think so too it is just it does not look so fab.

Things like Scampi in batter, or battered fish type things are more difficult .Omelletes done with cheese go down well and even poached eggs with a good layer of Bernaise sauce have a pleasant flavour .

A fillet steak lightly browned with onions then added to a casserole dish with a sauce of 2 tablespoons of tomato sauce ,double cream ,shery or brandy mixed to gether and poured over top.Cook in oven for 40 minutes medium heat then put contents in blender is also delicious and serve with mashed potatoes .(mash tatties with generous portion of butter and cream ) really soft to eat but u can taste the steak and sauce flavour is really yummy. All trial and error depending on how your taste buds are coming along , they will sort themselves out though .

Food for thought ,worth a try .

Look forward to hearing your new songs .

keep being positive won't be long till you feel on top of things again .

Bell.

Hows it going Tony? Are you feeling any better?
Cathy

Hi just got back from holidays - it was glorious weather - the day we had to drive back! Having to use oromorph at night and still not able to eat well most of the time but I'm surviving. Eating and drinkling seem to set off the earche which drives me mad. Actually swallowing isn't that painful (compared to how bad it was) but the ear is awful. Stll I do feel I am getting better - it is just SO SLOW. I can't believe how long it takes.
Got to go now so will write again later!

All the best to everyone and I hope I am in more pain than you are....

Tony

I got my self signed on for work ytesterday and go back to school on Thursday. I may be mad - my wife certainly thinks I am but I have to give it a try. I will find eating difficult and may have to survive on one of the drinks whilst at work but I will get by. Meanwhile I have to go in for a good look around under anaestheitic in the operating theatre - there's probably a name for this but I can't think of it right now - next Wednesday. They tell me it's just a look around and nothing to worry about - just a check - so I am trying to forget about it and concentrate on being me.
Styarted singing again yesterday and working on "radiotherapy Fun" and "Operating Theatre Blues" - hope someday to put them on web so people can have a listen and hopefully a giggle.

All the very best to everyone and I hope I am in more pain than you are - or your loved ones.

Tony

Hi Tony,

I always put some cotton wool in my left ear and that helps relieve the pain.

I admire you for returning to work and wish you all the best. Hope it all go's well next week. Maybe you should put in for the "X-Factor"?

Take it steady.

Best regards

Ken