Throat cancer

Hi Dickie. It took me six months before I could enjoy the taste of food. I was eating soft foods at six weeks and managed a steak at 12 but it didn’t taste of much. The only way I could tell what I was eating was to blow the air in my mouth back up and out through my nose while I was chewing. Food was fuel so I just ate it. 
Now at four years I can eat anything. 
Things will get better. 12 weeks is early days. 

Hi Dickie, yes, it is normal, food will taste awful, but as Dani has said look at it as fuel, which you need to recover. It was about 9 months before food tasted anything like it should have, for me. Don't worry it is still early days for you, you will enjoy your food again, give it time. All the best.

Regards Ray. 

Hi Dickie. You may not think it but 12 weeks is early in the scheme if things. I’m slightly odd ball I never lost taste but I had accentuated taste I’m 4.5 years post treatment. There’s very little I can’t eat mostly spicy but I can eat an aromatic curry. Some  things affect my tongue but it’s my choice now whether to eat them. Take the new few months one day at a time and the mantra food is fuel served me well. 
By around 6 month you should start ti notice improvements. Poached eggs are good on top of well buttered toast. I’ll pop a link on ti a few head and neck cook  books might encourage you. 
Hazel

https://www.yumpu.com/en/document/view/66263025/cookbook-by-andrew-gaylor-head-and-neck-cancer-survivor-2022

https://www.yumpu.com/en/document/read/67107065/eating-with-confidence

Thanks Raz,

What about saliva and appetite. How are they now? I have little of either. 

Reassuring. Thank you. I’ve been getting quite fed up with the tube and have feared never looking forward to a meal again. Is wine ok?

Tnx Dani,

Although the news is disappointing, at least I can set realistic expectations. 

What about saliva and appetite?

Hi Dickie. Dry mouth is a long lasting one but it does keep improving. Try sugar free gum during the day to stimulate saliva buds I use orbit in blue tubs. St night I still use xyimelts popped in at bedtime last all night. I also paid for auricular acupuncture which helped. . As for appetite that takes time I found 6 smaller meals  spread through day on tea size plates helped.

min early days I carried water everywhere now I don’t need it constantly  even now at 4.5 years I am still getting small improvements  

Hazel 

My saliva improved steadily over the first year. I found chewing sugar free gum helped tremendously and I started acupuncture which really seemed to help. There are two posts about it in my blog. 
Hazel has mentioned xylimelts. I still use one at night. I learned about them here on the forum. You do need a little saliva for them to work. Amazon has them but there are cheaper sources if they suit. 
Appetite is a difficult one. Some people dream of food others find the whole thing a chore. I couldn’t care about eating at all for six months I’m afraid. 

Hi. I’m 9 months post treatment for tonsil & lymph node hpv 16. I had bilateral tonsillectomy & part of tongue removed followed by 6 weeks of chemoradiation. I had a PEG. I used it from week 4 for several weeks, linking up to a pump overnight. I started eating creme caramel, custard, soggy weetabix with full milk & sugar,tops off mini trifles, tiramisu, skyr, tinned peach slices. Gradually over the weeks I ate more & tried different foods. Nothing tasted right & even now some foods are horrible.Most days I have a nasty mouth taste combined with the top note of salt. I chew sugar free gum to try & offset this & to exercise my jaw & stimulate saliva production. I use Xylimelts at night. I take water everywhere. I have started acupuncture to help with saliva production. It took weeks for appetite to come back. I can taste foods pretty well now. Though some things I used love taste wrong so I don’t bother with them anymore - coffee, tea, chocolate… Dry foods need gravy/cream. Bread, sandwiches, crisps are too difficult to get down. BUT you just have to try different things & find new favourites. 

You are so right Blod you do find new favourites when other things just taste wrong. I had my first radiotherapy in 2013 and a second lot in 2019 and have had to do just that. The good thing is that I no longer crave the things I used to love and the new favourites work just fine. I no longer can drink tea or coffee as they taste awful. I used to love my cup of tea in the morning. I have replaced it with hot chocolate or Sustagen. I am lucky that I don't have to worry about the calories in them as my weight is now stable since adjusting to my different diet. Tiramisu is my new  go to when I want to spoil myself.

Lyn