Sore mouth, before radiotherapy.

If I recall rightly your wife had quite extensive surgery. I am not surprised she is still having some difficulties.

I am sure a few of our group will have some lived experience and can help you. 

It's a difficult one trading recovery from surgery for time to the RT starting.  Ultimately an honest and frank conversation with your clinical team would be of benefit - and that's not just them telling you what to do it's about a 2 way dialog so they and you both can understand the options, benefits and risks going forward. 

Momist said:

Linda is now requesting continuing the PEG feeding rather than attempting to eat.

My take on this is that if my mouth is too sore to eat and I have a PEG then I use the PEG. 

Hi Momist. Could your wife possibly have oral thrush. This makes your mouth very sore. Ask your doctor so this can be ruled out. There are treatments to help resolve this if it is the issue. It sounds so painful and a bit of a set back so I don't blame your wife not wanting to eat. Oral thrush can take a while to resolve and can't be hurried but it does go away in the end with treatment and persistence.Does Linda use a mouthwash as oral hygiene is so important.  I use a mouthwash of bicarb and salt after every meal I eat and this seems to do the trick and I have not had anymore oral thrush. My specialist dentist recommended it. I find it much gentler than the over the counter brands.

Sending Linda my very best wishes 

Lyn

Thank you for the suggestion Lyn.  When I mentioned the idea to Linda last night, the reaction was "Oh no. I've had thrush, it's not that". Her thrush was >40 years ago!  Anyway, this morning she has come around to that way of thinking and admits it could well be thrush.  We'll be pursuing that, but today we have an appointment for the dressing on her tracheostomy site, which has been slow to heal.  Thank you for your good wishes.  

So today we managed to see one of the Head and Neck Cancer Specialist nurses on the MaxFax team.  She gave us a lot of her time to ask Linda lots of questions generally, but she also looked into her mouth and said that she could not see any evidence of oral thrush.  The white-ish deposits are possibly some minor necrosis on the edge of the flap, or simply an accumulation of white blood cells and serum from the healing.  There is no inflammation or any other bad signs.  The soreness seems to be simply her mouth reacting to the textures and acid/alkali of food, after not experiencing anything but water for over seven weeks.  She gave us a lot of good advice, and said how well Linda has healed so far.  She also recommended a mouthwash with bicarb., as Linda cannot tolerate salt due to the lichen planus.

All good news, and she was so very nice about the whole thing.  It has brought us both a lot of reassurance.

Thank you to the forum for all your support, and just for being there.

Ian

Good evening Ian, so happy you both managed to chat with the nurse and that Linda is making good progress. To be honest i would keep usingt PEG until the radiotherapy has been done, im sure her mouth will recover on its own in its own time, i never see the point in rushing the recovery as we are all different and recover at different rates with different side effects. Wishing you and you wife all the best, take care. 

                                    Chris

Hi Ian. So glad that you got some good advice from the nurse on the Maxfac team. It must be reassuring to know what is going on. I too have lichen planus and that alone can make your mouth very sore when it flares up and makes eating difficult. Mine has settled down since treatment so fingers crossed Linda's will too.

Best wishes

Lyn