Hi again all sufferers, now into week 4 and nothing changed really,still struggling to eat anything and occasionally using my feeding tube. Was very poorly on Sunday with sickness so yesterday at Chemotherapy they changed my meds again. Now Monday and off on my daily 80 mile round trip for radiotherapy, although i get some lifts now as I'm to worn out to drive. Was hoping anyone could tell me how long post treatment their taste started to return as I think till then I can't see me putting any weight back on which we all need to get some strength back.
Good luck to all GSP
Hi GSP. My taste returned gradually over the first couple of months post treatment. It’s still not 100% 5 months on but it’s pretty good. During those dark days when I had no taste whatsoever I lived mainly off readybrek, custard, scrambled eggs, mashed bananas - all with lots and lots of double cream. Fortisips too. I managed not to lose weight, but as my body started healing and I didn’t need the calories I started to put too much weight on as I couldn’t quite give up the cream - which by that time tasted lovely! Heaven only knows what it was doing to my arteries but it was simply a case of priorities.
Hi. My taste started to return maybe three months after treatment ended but it was often a case of one step forward and two steps back. Some times what tasted acceptable one day tasted horrid the next and food I had been eating for weeks suddenly became really bland. The most annoying thing was to get a real hit with the first mouthful which then disappeared to nothing after a few more. My taste see sawed for a year. Even now though 2 years plus there are improvements.
The thing to get your head round us to consider food as fuel only. If you can swallow it.... eat it. If you rely on appetite and taste to maintain weight you’re on a loser. Just get the stuff down by mouth or tube. Good days do come again but they can be a long time coming.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi GSP
can only agree with Dani I was one of the lucky ones I didn’t loose taste but I had the opposite a heightened sense if taste. You cant rely on taste or appetite to thrive. Food is fuel eat to live was my mantra for a good year once you’ve accepted that you will get on. I was told to sun for 2500 calories each and every day including 85 gram if protein plus 2-3, litres of water. Use your feeding tube that’s why it’s there I was n g fed from week 4 ti week 3 recovery. When tube was out I had orally 6 ensures each day until I could swallow. There’s no easy fix I’m sorry to say it’s heads down and forget about living to eat it’s eat to live. I didn’t start to put weight on until 15 month post treatment. Info on my blog details below with links to others.
meet all get there but you do need to keep nutrition going jn.
good luck Hazel x
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
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