1st post

Welcome Livdad to the forum. sorry you find yourself here.  I too had cancer of the tonsil and a lymph node.  I had two operations and radio/chemo therapies.  It is a tough road, but there is heaps of help and support on this wonderful forum.  The people on here are amazing, any problems, worries or questions someone will always answer you as best they can.  We have all felt the way you do now, but it does get better with time.  It does take a long time and the journey is tough but you will get through it. Keep coming on here and posting everyone is here to help and support.  Read my bio to get an idea of something you could look forward to, but remember, everyone is different and even if you have the same form of cancer as someone else and the same type of treatment doesn't necessarily mean your journey will be the same.  Big virtual hugs.

Hazel x

Hi thanks 

Read your bio what a warrior.

Im just so down at the moment cant eat cant drink cant get rid of the pain of a large ulcer on my tongue.

Been given slow release morphine that dont touch it either Im just praying I can get rid of this blister/ulcer not quite sure.

Will speak to nurses again tomorrow 

Hi Livdad. Welcome to the forum. Nearly everyone here has had radio and chemo. The radio is tough and the pain you are experiencing in your mouth unfortunately is one of the side effects of treatment. Are you on sufficient pain relief? I started off with panadol and then was put on morphine and fentanyl patches. The extra pain relief did help. Please talk to you radiotherapy team and have your pain relief reviewed as that is crucial. Others have been put on different pain meds and it does make a difference. If you have a feeding tube do start using it so you get sufficient nutrition. You are halfway through your treatment so hold in there you can do this. Take one day at a time and you will get there in no time and it will become a distant memory. You are tougher than you think. It is now 6 years since my last radio and I am living and happy life and you will too. 

Sending you positive thoughts.

Lyn

I found that Difflam spray and mouthwash helped a bit, which were prescribed for me by the team.  I also bought a load of Bonjella mouth ulcer gel and that helped too.  Hoping you find some sort of peace from it soon.  Big hugs.

Hazel x

Hello Livdad

Sorry you’re in pain.  Ulceration is horrible.  I was given Difflam and Gelclair which helped.

Liz

Tonsil cancer also, 2 years since Chemotherapy Radiotherapy finished, mouth pain was managed by Oramorph and slow release morphine, Oramorph dose was upped during the worst of the pain on CNS instructions, as stated Difflam spray also helps, don't suffer in silence let oncology know about pain issues.

Hi there and welcome but sorry to see you here. My husband was diagnosed in Dec of last year. You can see our journey on my profile. The treatment is brutal and the recovery is very hard but it is doable. 

It is imperative that you get the right level of pain relief, Jon was on slow release morphine, oramorph and hefty doses of paracetamol (obviously all prescribed by the team). 

im not going to lie, it will probably get worse before it gets better. Keep your mouth as clean as possible, hard I know when everything is so painful but it gets much worse if you get thrush. Jon had it 3 times and it was awful. Use the mouth washes, you could also try rinsing with salt water as well.

Do you have a tube fitted? Jon had a NG tube inserted 3 weeks in as he just couldn’t swallow enough to maintain his weight.

Keep talking to is, there will always be somebody who understands just what you’re going through and are here and ready to help you through as best we can.

Hugs and strength from west Wales.

Debs xx

Hi Livdad 

Welcome from me too.....

I'll add to everybody else's ...

I agree.....nothing at all touches the acute pain of swallowing though background pain can be managed. Tell RT team today. Some folk here have had fentanyl or Buprenorphine patches which do a better job than long lasting morphine.

To go back to swallowing. I just didn't. I had an NG placed in week 4 and quite frankly it saved my life. If you have a stomach tube fitted use it, if not ask for one. An NG can be fitted in minutes.

Livdad said:

Im just praying I can get rid of this blister/ulcer not quite sure.

I'm afraid this won't start healing till well after you've finished treatment. RT ulcers take a long time. Mine were quite a bit better by 12 weeks post.

I was completely OTT with oral hygiene, Caphosol,Gelclair, and salt/bicarb. Difflam is an NSAID but I found it of little use as an analgesic. Last thing before bed I gargled with Corsodyl which was hell but kept thrush away.

Plod on...you'll get there....Hugs

Hi Livdad, we all know how you feel, it is a tough old journey we have to endure. Keep your team updated on the side effects you are getting, if they give something and it doesn't work tell them they will up the dosage or give you something else. If you have a feeding tube start to use it, for overnight feeds, trying to eat will make your mouth sore. Try to take things one day at a time, you will get there. Stick with us we are here to help.

Ray.

I was prescribed Oxylan, and it certainly helped with the  pain relief. It was prescribed by the team.