General Mouth Care and Thrush Advice

Hi Sue

well done for nearly getting there. 
I used Oranurse to brush my teeth... still do. 
Caphasol and Gelclair as they work in different ways and I used both four times a day, but not at the same time. 
I couldn’t get on with soda bic and used BioXtra mouthwash for general mouth freshening. 
I hated doing it and it hurt like mad but last thing before bed I slooshed with Corsodyl. I avoided thrush entirely till much later despite taking Fortisips orally when I could. I guess I was lucky. 
Hang on in there. You’ve got a rough three weeks or so. 
Make sure you have all the meds imaginable from the hospital before you’re done as you probably won’t see anybody for six weeks. 
Take care and let us know how you get on. 

Thanks Dani I was wondering about Corsodyl as I do have some of that and wondered if I should try it.  I am not sure I have time for all of the mouth washing - 8 times a day maybe that is where I am going wrong! I need to up my game but good to hear you used both GelClair and Caphasol as I have been doing the same but not so frequently I would say 3-4 maximum and that is one or other.

Did you manage to eat/drink anything at week 6? I can't face doing either so pleased I have a tube now.

I am contact weekly with my team agreed via email as I can't talk that well with mouth ulcers etc on phone but that suits me as I just want to rest for a couple of weeks and looking forward to not doing those daily trips!

Sue x

Sue. The first two weeks after treatment I was largely in a morphine induced permanent doze. So not much orally. I did make an effort after that. I started with trying to drink the Fortisips which was ok as they didn’t taste of anything. Ice cream and custard were ok too. I gradually added texture and by 6 weeks I could eat scrambled/poached eggs, soup heavily fortified with cream or melted cheese for calories, porridge ( I started with ready brek which is fairly texture free, baked beans, tinned macaroni cheese slipped down well too. It’s a case of trying stuff and not being worried about throwing failed experiments away or not being able to eat something one day that you could yesterday. Avoid tomato in any form it’s really acid and will hurt. 
Recovery is a full time job but not a permanent one so just put your head down and don’t do anything else. 
There are a few ideas here. Just experiment. It helps if you have a dog. Better he gets fat than your husband 

Hi Sue make sure you have plenty of meds before you leave hospital. We tend to find our g p not as accommodating at times. I wasn’t eating at weekb6-7? I had 7 weeks if radiotherapy . I started sipping ensures once treatment had finished snd by week 3 I had my n g tube out do it was sink or swim I had orallyv6 ensures a day plus soft bits of food poached eggs 

good luck 

Hazel x

Thanks for the tips and advice ladies very helpful.

Sue x

Hi Sue

It can be quite painful to brush at your stage but it is worth it.

I use oranurse too, I find the duraphat gives me ulcers. I brush about five times a day (morning, night and when I have eaten) and I use oraleive mouthwash 3 times a day too.

Chlorhexidine -I used chlorhexidine for a while but  I am not sure about this, it is fungicidal but it is a very broad spectrum anti bacterial so will wipe natural beneficial bacteria out. I would only use it when advised by your team, and I would use a specialised anti fungal for the thrush. I still got thrush despite using chlorhexidine

At your stage I also found difflam helpful when eating and also had a dry mouth spray I used constantly.

Oh yeh - once my last dose of thrush had cleared up I made a point of cleaning my tongue several times a day (very gentle brushing) Obviously if you have ulcers on your tongue it's not an option but it definitely helped me... I couldn't really do this till a month or so past treatment 

Well  done on getting this far!

Trev

Thanks TrevW - good point about the chlorhexidine.  Which dry mouth spray did you find works. I haven't been given any difflam but I am going to ask the team about getting some this week as so far just managing on paracetamol.  I can manage to brush it is just all of the mucus makes me gag particularly when I find it hard to rinse out my mouth after brushing my teeth, you don't appreciate how much you need saliva!

Sue x

I found the boots brand of dry mouth spray was ok 'boots dry mouth expert' - and a lot cheaper than most.

I also found glandosane really good (a bit better than the boots) but it was really expensive and i got through 3 bottles a week at 10 pound a bottle

I didnt try bioxtra spray but have heard good things about it.

I still use xylimelts occasionally even now, but you need some saliva in the first place to get any benefit from them so i would switch to those in a month or so maybe.

Definitely get difflam, i used it by the bucket load, dont get me wrong there is still pain early on- no matter what meds you use that is inescapable (although it does eventually go) but difflam helped me quite a bit.

Totally get you on the brushing, mucus was a major issue for me too, i think it is for all of us, and i used to dread my first brush of the morning as well. 

Thanks TrevW that is really helpful and reassuring I was beginning to think it was just me!

Sue x