I am almost 3 months since the end of my bilateral RT for throat cancer. My question, what I could do with advice on is this.
I still have no sense of taste. I use benzadymine mouthwash at least 4/5 times a day and, I'm taking Nystatin just in case there is any 'residual' oral thrush. As well as rinsing my mouth once a day with warm salt water. I've just re-started on Carbocisteine in case I still have mucositis too.
I feel absolutely fine but my tongue, my tongue feels like it's burning or, if I yawn too big a yawn, my tongue feels like it's being ripped out. Tomorrow I've got some gelclair coming (that's cost me £36) because my GP wouldn't prescribe it.
Can anyone suggest anything further that I can do? It's been almost 4 months since I've had a physical, solid meal. The RIG/PEG feeding of 2cal overnight is all well and good but, I've lost so much weight and miss my food that it's difficult to not let it affect my mood. (so much so that I've bought some new kitchen equipment for when I CAN cook/eat again).
Many thanks one and all for any input you can offer
Hi Colster1975
you’re still very early in your recovery. It’s a pain but all you can do is to try soft foods, custards, scrambled egg with Philly added to keep it soft, ready brek which is less grainy than porridge. Dunk biscuits in warm tea. Tinned peaches slip down easily. Food is fuel right now so you have to ignore the taste.
I've just re-started on Carbocisteine in case I still have mucositis too.
If you have mucositis again then get your oncologist to look at it. You might have an infection. If you actually mean sticky mucous then sipping fuzzy water or diet cola can help.
The burning tongue might just be because it’s not being roughened up by food.
If you’re worried. Give your CNS a ring. They should give you Gelclair if it helps.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Your clinical nurse Specialist
The nurse that has been looking after you with your oncologist. Sometimes they are MacMillan nurses
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
This thread may give you some ideas too
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
