Hi ShaunW,

Yes, you shouldn't be in any pain. Oncologist should ensure adequte medication for you to remain pain free. A bit sore in certain areas perhaps but not real pain.

Good that you don't need a feeding tube yet, a good sign. If you need one they'll sort it. 

My only problems since being given the all clear is lack of saliva and the eating/swallowing only progressing slowly. i think that will come back eventually as I can see progress however frustratingly glacial, but might be stuck with Dry Mouth long term. Suppose chewing sugar free gum and carrying a small bottle of water around is a small price to pay for being alive!

Thanks again to you all for your words of encouragement. I’ve just finished week 4 of 6 and started to loose a bit of control with the pain. My oncologist and his team have been amazing, it’s just these bloody mouth ulcers really kicked off this week. Plan is to review again on Monday and up the strength of my patches. I have worked hard with eating and have even put on a pound through it all. Another poster on here recommended Huel and it really has been a lifesaver. For some reason it doesn’t aggravate my mouth the same as regular food. I just make it with full fat milk and cream, giving a nice high calorie smoothie.

Hi Hilts, yeah dry mouth a big problem. My water bottle goes absolutely everywhere with me; I couldn’t survive for more than a few minutes without it. If we can get through this with just a dry mouth then yes its a small price to pay

Hi 6G, phew four full days of chemo sounds really tough. It must have taken a lot out of you. I’ve only had one so far and i hated it; worse than the pain in some ways.

Cariad you get out in that motorhome and enjoy every minute We have a static caravan by the coast at Formby. I love it there and dream about getting out there to recuperate.

take care all. 

Shaun

Hi Shaun this is Hazel aka radioactiveraz I am now 1 year post radiotherapy for tonsil cancer h p v 16. Yes I still have dry mouth but am having acupuncture and it seems to be working my mouth now feel s moist. A tip I use xyimelts at night time just half one one and I get a good sleep now every night. Order online the mouth ulcer company. Too early for u while in treatment but worth trying. Water follow s  me everywhere I still can’t drink tap water only bottled .

i too had a mouth ulcer full length of my tongue from week 3 to about week 8 of post radiotherapy I was prescribed gelclair it’s good . 

I got to Spain week 8 post treatment it was sheer grit and determination like u with static it’s good to have goals . Have updated my blog last week give it a look if u want my perspective on it.

Keep in touch. Good luck hazel

www.radioactiveraz.wordpress.com 

Hi all, just finished my treatment yesterday and have dveloped an awful mucous plug at back if my throat. Mouthwashes and humidifier don’t help and its driving me insane. Was in full blown panoc last night as felt i could not breathe. Any recommendations on what will help to loosen the mucous.

thanks,

shaun

Hi Shaun have the hospital,given yiou a nebuliser ? That’s about the onky thing that I found worked in the early days , what it is it’s your body’s system teactingbtomthe harshntrratment amen creatung more mucus tomrry and protect ut m are yiu abke ti drink water ? If simsoda water is good as the bubbles helomto break the mucus or try Luke warm water or Luke warm tea  green de caff I’d poss  or any herbal tea ?

its the joys of recovery , plus I was using a box of tissues a day in the early weeks.

other than that well done on completing treatment now the hard work begins ! Drink. Drink drink water is a good motto as it does help tomyhin the mucus 

Hazel

Thanks Peter and Hazel, will ask hospital when i visit tomorrow or maybe just go and buy one!. Did either of you use Carbocisteine. Its a drug and I read it somewhere that it loosens the mucous.

also what did you put in the nebuliser? Just water, saline, or spmething else? They have one in local argos so  might just go and buy that one. Dont think i can stand ankther night without one...

thanks

Shaun

Hi Shaun , I was given saline with the nebuliser which worked well 

Hi

Husband is 3 weeks post radiotherapy for T2N1M0 tonsil cancer spread to lymph node (tonsillectomy and 6 weeks radiotherapy). He has done well really but is struggling with extremely painful back of tongue which makes anything other than soup, yoghurt, ice cream and 8 Fortisips a day very difficult to get down. He did have a RIG but it fell out 2 weeks post treatment and as he had only used it once, the dietician was happy for it to stay out. He is getting frustrated that the painful tongue isnt improving. No pain relief seems to help, nor does Gelclair or Oxetacaine before meals.  He has only lost 1kg since start of treatment, but is getting mightily fed up with Fortisips!  Has anybody experienced this and how long might it be before there is an improvement?   Soluble Asprin gargles dont help either.  Any advice welcome. The lump in the lymph node has shrunk dramatically, does this continue. Hes due PET scan early December.