Although my thrush seems to have abated (fewer white patches), I'm still having trouble eating/swallowing. My tongue is bright red and feels raw! It's also noticeably swollen on the right (the side that had more extensive surgery). When I stick it out, the right side is twice as thick. This means I keep biting it and although that could explain swollen taste buds on that edge of my tongue, it doesn't explain why the left is covered in swollen taste buds. Looking up these symptoms led to burning mouth syndrome, but not to any useful suggestions for treating the pain. One blog says to try opiates, but I'm still on morphine anyway and that hasn't helped. Has anyone else had this and did it go away, or is it just another legacy of oral cancer?
Oh, also, there's a strange taste...not sweet or sour, nor metallic....can't really describe it...maybe a bit metallic...but I thought that didn't happen until radiotherapy.....still haven't had an outpatient appointment about that, even though it's been 6 weeks since the op. Mind you, Christmas probably put everything back a couple of weeks. Shame cancer doesn't respect public holidays.
Any ideas to relieve sore mouth and tongue would be very much appreciated

Hi Bramble,
I had a swollen tongue on one side for a good few months but it was after radiotherapy. It is still not the same as before treatment and is as you describe, it seems to feel like its more prominent if that makes sense and there is a definite taste sensation. It still comes and goes. I found manuka honey very soothing. I still have a few teaspoons now and again but it is very sweet. (saw it in Aldi for £3.99). I had read a lot about its claim to healing, and i gave it a try. I also had a lot of ice lollies, Fruit pastille ones were my favourites and they also get a bit of fluid inside.
A good few months after I had finished my radiotherapy i still had a big sore on my tongue, My dentist thought I was catching my teeth (especially the filled ones) on my tongue and he shaved them a little. Along with using tooth mousse (sp?) it really helped.

Please keep posting and let us know how you get on.

Well, I still haven't even had a planning meeting for my chemo radiotherapy, although I have signed the consent forms. I do, however, have to go back to see the registrar. 7 weeks after surgery and 2 new swollen lymph nodes. Considering the speed with which they grew before the surgery, I'm terrified. Will they delay the RT and operate again, or carry on and hope the RT gets any new instances....
Also, still can't eat solids. Fortisip tolerable though, much better than ensure in my view.

Morning Bramble, perhaps you should phone up the department to confirm your appointment. Its possible it could have been lost in the post over the holiday period. All the best, Fran

Thanks Fran. I did call and was told I wouldn't be seeing an oncologist, or indeed any doctor for several weeks and that my planning meeting would be set up "In a few weeks". Not happy. Called again and they have now scheduled the planning meeting an hour after my appointment with the registrar. Fine, except one is at the John Radcliffe and the second at the Churchill. Fingers crossed for tomorrow.

Finally!
RT starts with overnight chemo on 6 Feb. Further chemo after 3 weeks, then finish on 21 March, although dates conditional upon further diagnostic CT not indicating that further surgery required for new lumps. God, I am so scared. So many of you have endured such awful side effects and, as you know, I'm really not very brave. If it weren't for being a mum, I'm not sure that I could do this.
My sister got me some manuka honey and I've started on that...any other tips, PLEASE, to make this easier....

Hi Bramble

I took to sucking Rescue Remedy pastilles before my RT, but if your mouth is too painful then just take the drops. I've no idea if it helped, but I like to think it did. I also had accupunture throughout my treatment, same story but I'm sure it didn't do any harm. I lived off Fortisip and didn't have a tube - I lost weight but mostly after the treatment not during it. I'm a mum too, if you can go through childbirth you can get through this no problem!
Good luck and keep checking in.
Big hug
Vicky x

Thanks Vicky, for the tips. Funnily enough, I didn't go through childbirth! Both deliveries were caesareans under general anaesthetic (not my choice), so I don't have any claim to bravery!

I can send you a pm with some tips that helped my dad - info that others gave me here - Feb 6th is my bday - i will make a wish for you

That would be great HD, thanks...and Happy Birthday...can't promise I'll be thinking of you, but will try to remember as it will take my mind off the treatment!

Hi Bramble, Thanks for your reply, i am not finding it to bad giving up, Reading the stories on here makes you more determined to quit, so thank you and send you and everyone healing thoughts, hopefully i am worrying about nothing,

Yes, well, I will understand if your thoughts are busy - besides, I am the one with the wish to give that day

forgot to send pm as I got busy - will go do

Do you know what kind of chemo you are having?

Just two cycles of cisplatin at days 1 and 21 of radiotherapy. Hopefully the side effects won't be too bad, but it seems as though, whilst RT gradually builds up, chemo will give side effects at a low dose if it's going to give them at all....we'll see...PEG fitting tomorrow and a further diagnostic CT for the new lumps...

New lumps ok ish...one was just a node doing it's thing....trying to kill off another (!)infection at the donor site. The other is part of the parotid that was lft behind. It does have a lymph node in it, but is within the RT blasting zone. The bad news, though...of course, since it 's me, something was bound to go wrong....my PEG is agony...possibility that it's placement has irritated my liver, to which it is apparently very close, or that, my being young fit and healthy (yeah, right, I have cancer!), my abdominal muscles are complaining about damage...which precludes removal and re-siting, as the same problem would arise! So, staying in for a second night, then a decision will be made...but, they won't do the RT without a peg because they have to zap both sides of my neck...meanwhile, my oramorph scrip has been doubled! Really getting p****d off now. When is something going to proceed according to plan?!?