Eating - (Right tonsil cancer - 10 weeks post treatment)

Hi Linda, I did post an answer to you but it disappeared. Sorry you are having trouble eating, using Duraphat, could be adding to your problem, it is a bit harsh on your mouth, people recommend to give it a rest, and try Oranurse for a while. I hope things get better for you soon.

Regards Ray.

Thanks Ray, I have some of that,  I'll give it a try

Hi Linda. Do you have Gelclair? That should help with the ulceration and the pain. Even the Difflam you got at the beginning should be of some use too. Ray is spot on with the Duraphat. Give it a break for a couple of  months. When your mouth is a little better get your dentist to give you a fluoride varnish then you don't have to worry about high fluoride toothpaste for a while. I couldn't use duraphat for two years.

Fortisips are fine...just rinse your mouth out well

Hi Dani, yes I do have Gelclair in my pharmakitchen. I am using Caphosol more at the moment because the taste of Gelclair was knocking me sick and its so thick and slimey. I have a lot a thick gunk at the back of my throat and it seems to make it worse. I did have Carbocisteine, which seemed to be helping with that a bit, but it's taken over 2 weeks to get GP to prescribe the liquid one, so I'm back to square one. 

SALT said to dab Gelclair neat on ulcers, which was fine when they were at the front of my tongue but I can't reach them at the back,  so I mix it in a little water and gargle with it. Now I have some Carbocisteine I'll try Gelclair again. They aren't too painful if I don't eat. Even a small tub of rice pudding set them off yesterday, along with the roof of my mouth. I don't mind not eating,  I've got used to it now. 

Why rinse mouth after Fortisips? I do drink a fair bit of water after to wash the slimey texture away. Usually brush my teeth after as well because I class it as a meal.

Thanks

Linda

Lindyloo112 said:

Why rinse mouth after Fortisips? I do drink a fair bit of water after to wash the slimey texture away. Usually brush my teeth after as well because I class it as a meal.

Rinse the sugar away. You should be waiting 30 minutes to brush your teeth so in the interim a good rinse will remove the sugar. Bioxtra is a nice gentle fluoride rinse and I get that on prescription. 

Yes you can dilute gelclair. It's just a matter of time. Some people get really awful RT ulcers and they are not like ordinary ulcers. They are deep and take a long time to heal.

I didn't lose my last one till six months, though by then it really wasn't too painful

Aaah right, thank you. I'll see if hospital will prescribe bioxtra, it's such a drama getting my GP to prescribe anything, it's exhausting!

I can feel the ulcers in the back of my throat, but they don't hurt too much unless I eat hot or cold. I was managing blood temperature skinny noodles, but it started taking the skin off the roof of my mouth making it too sore to eat after a few mouthfuls. Even yoghurts are too rough at the moment. 

Getting there though, albeit slowly

Hi Linda. As Dani’s explained rinsing after fortisip is the get rid of the sugar. I used to dilute gelclair mouth care used to take forever. Ulcers were and sone ears still are the bane of my life. It does get easier what youre  in is the post radiotherapy phase iwas s goid 6 month with them . It does get easier. As for g p that’s not good enough you should have a practice manager see if she can get their advance  nurse health practitioner to handle your prescriptions. Oranurse but online that’s non prescription. Ask your ent consultant if they can refer you to hospital dentist for duraphat if you can’t get a dentist but you really need one as soon as you can. I go every 3 months without fail. Have you been checked for oral thrush ? Fortisip snd ensure tyoe drinks csn give it to you as well as treatment. Hope you get sorted. 
Can you try poached eggs 

Hazel x

Hi Hazel, I'm kind of getting used to the ulcers and the easiest way to deal with them is not to eat. I don't have the energy to cook at the moment, but, Fortisips as well as being the easy option, I think are more nutritionally balanced than what I was eating. Food was also sending my INR from my warfarin into a frenzy! It's settled now I'm not eating 'food'. Obviously I will start trying things again soon though. I was having scrambled eggs when I could eat, not the biggest fan of eggs but I'll possibly try poached when I can eat warmer food, don't think I could eat it cold.

My GP surgery are so short staffed, it's a nightmare getting anything sorted. They have an in house pharmacist who is supposed to put meds on so I can order online...they can't even sort my pre cancer meds! I find it tiring talking too long, so it's frustrating having to keep phoning, then finding out some meds aren't in my package (they never tell me)  or it's hard capsules that say 'do not crush or chew'! I'm seeing a nurse at the doc's week after next for bloods as my blood pressure is high, I'll see what she says. I'll just buy my own meds/toothpaste etc where I can, just to save any fuss.

I've got so many appointments in March, including the hospital dentist, hopefully one of them will help. Fingers crossed the alleged snow stays away!

I have a private dentist as I couldn't find a NHS one, and i did see him pre treatment. He gave me a 6 month appointment and i cant get one sooner even though hospital dentist wrote to him and explained i needed 3 monthly visits and what I needed etc. Hopefully i can sort that out when i go in April.

Thank you

Linda x

Linda. You don’t need to see the dentist every three months . Hygienist will do 

Hi Linda as Dani says  a hygienist will do I see dentist every 6 months  and hygienists every 3. Hope you can  get your  medication sorted it’s so unfair that you are having to fight for everything.

Hazel x