Yesterday was my 10month anniversary, or to be more precise 43 weeks and 3 days since my last radio session. While my general fitness marches on I am still working hard on the saliva front. I can manage most foods, needing a drink with only the driest but I am getting quite frustrated with my taste buds. Nothing tastes the way it used to and while I keep trying all the things I used to like I am frequently disappointed. I can tell you that spending a while in the kitchen creating a dish, enjoying the tempting aroma and paying attention to presentation then popping a succulent morsel into my mouth only to taste sawdust is bloody bloody annoying. My throat stays a bit scratchy and dry. I remember my oncologist telling me he was “going to really fry” the back of my throat. Errrrr…. I can imagine better ways of telling me but he was spot on! The mucous membranes are wrecked and my uvula and its important salivary glands is a distant memory, a stump. I have absurdly developed a real sweet tooth because perversely I can taste the very sweet foods that pose ruin to my teeth! What torture! On a happier note there seems to be more saliva. I can get through the night without glugging copious mouthfuls of water. One xylimelt sees me right through to the morning. I have been going out shopping with just a pocketful of chewing gum and leaving the bottle of water behind at home which is somewhat of a milestone. I was wedded to those water bottles for so long, in fact I have one “lucky” plastic bottle that has been with me on all my appointments………..It’s got to last five years! 🙂
These things are my daily standby. I have become absolutely compulsive about oral hygiene even setting my phone timer to 30 minutes after eating so I can rush upstairs to brush the food away.
I can’t use high fluoride Duraphat which brings my mouth out in ulcers so I replace it with a Oranurse which has no foaming SLS or flavour. A fluoride mouthwash is used in between brushing. At night time I use GC MI paste which replaces the calcium around my teeth. I discovered this on the Internet and my dentist says it’s really good for sensitive teeth and anybody at high risk of caries. I use this last thing to brush my teeth before bedtime then pop a Xylimelt under my cheek and that does me all night. Occasionally if I wake with a dry mouth the an inch of Xyligel sorts that out.
I also go through industrial quantities of gum…..sigh! I hate chewing gum but it really does work in keeping my mouth moist. Instead of frantic chewing I have been practising parking it under my cheek….with some success
Finally, at great cost from the USA I’m trying some cannabis to help me sleep. I have been getting restless with daft and disturbing dreams recently; nothing to do with a dry mouth which is under control. Oh well……worth trying
Today my coffee tastes like Christmas in Costa Rica 
Ada I thank for you great blog are you in London what’s the name of your acupuncturist? Just finished radiotherapy For throat cancer HPV and keen to try Best mark
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Hi Mark.
No I am in Mid Coastal Wales. Are you in OZ? I think you need to compose an email along the lines of
” I am recovering from throat cancer and my salivary glands are compromised as a result. I understand there is a special protocol to help stimulate surviving salivary glands called Auricular Acupuncture. Can you help me with this or can you recommend somebody, perhaps?”
I armed myself with a list of acupuncturists in the area (Google will find them for you) and sent everybody the same email. I got a hit straight away.
If you would still like the name I’m happy to pass it on.
Good luck with your recovery, I hope you keep well.
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Hi Dani…My oncologist is Martin Rolles and surgeon is Layson Pope…good luck with the rest of the recovery…Just remember….Things do keep improving…even close to 5 years on…Take care and a Happy New Year !..Mike
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Hi…I’m Mike,or griffi137a on the macmillan site..I’ve found your blog experience very similar to my experience being a good food lover and keen cook..I’m 4 1/2 yrs on from RT and to be honest after the first year I had resigned myself to next to no saliva or taste returning after being told (as most of us are) it should all be back to normal after 6mths to a year…haha…I have found that my saliva and taste is STILL improving and i actually went back to my favourite restaurant for the first time this week since my RT, as previously I thought it a waste of money due to my lack of taste..I too developed a sweet tooth as this was the first taste to return but slowly the others came back,they seem to creep up slowly until you realise you are starting to enjoy food again more an more…The only thing I still can’t eat are spicy foods,curries etc which i love,anything with a hint of spice still burns like hell but every so often i keep trying ..hoping it will be ok because i have a passion for spicy foods,not stupidly hot,just tasty,spicy……..So i suppose what i am saying is please be patient,it takes alot longer than what you were told it would take but it WILL improve…..good luck…regards ..mike
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Hi Mike. Thanks for getting in touch. It’s a different journey with stark similarities for all of us. I’m getting there. So good to hear you have recovered so well and despite some real horrid stuff at the beginning you have healed, mind and bod.
I dropped some Christmas gifts off to the radiographers at the Singleton on Thursday and they said how well I looked. 🙂
Who was your oncologist by the way? I am looked after by Russel Banner.
Take care
Dani
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