When does food taste normal again?

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Hi all

Can I ask anyone with tongue and neck cancer, how long after RT does it take for food to taste normal and your appetite return to normal?

I’ve reached my 4th month after RT and managing small amounts of food but have no appetite and nothing tastes nice which is so frustrating 

Sue x

  • Six months for taste to gradually come back. Took another six for food to be enjoyable but to be honest it was another six after that before I could be bothered to eat. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hindus as Dani says it all takes  time. I had a mantra eat to live and not live to eat. I ate because I needed to. I forgot about any enjoyment that food would give me. I aimed for 2500 calories every day including 85 g of protein my weigh remained stable but I couldn’t put any on I had no appetite but I did eat as 8 knew it would aid my recovery.  Then around 15 month weight started to creep up so out went the cream cake and chocolate eclairs. 
    Taste wise I was the opposite I had taste  all the way through over exaggerated  taste so any seasoning set my burning tongue issues off. You’ll get there  just babybsteps and some days 2 steps forward and ine step back. In the early days it’s not unusual that one week we can eat something but the next week we can’t. 

    this cook book might help with ideas. Plus I used to have 6 smaller plates of food starting with breakfast then 11 am etc. I found our tummy’s shrink and itbwas a case of less is more 

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

    plus re read this article it puts our cancers into perspective. I printed copies off ti give to family and friends. 


    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

    Hugs

    Hazel 

    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 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Sue 

    I finished chemoradio in June 2023...October 2023 before I was eating full meals, appetite was still sketchy and taste was hit or miss....now 20 months post treatment my appetite and taste is around the 90% mark ....some things are still tasteless...on the plus side some things are back on the menu....curries...mild are no problem...Chasni and Tikka...Jalfrezi and Balti are new additions....3 months ago these were a no-go.

    One of the first things to excite my taste buds was alcohol free Guinness...3 months post treatment

    Peter

  • Thanks Dani that is a real help. It’s so hard to believe my taste will come back so hearing your journey gives me hope.

    Sue x

  • Thanks Hazel, I’m a bit like you with taste being heightened to certain foods like garlic and pepper, they really sting my tongue so I can only eat bland foods. 

    Sue x

  • Great news that you can eat curries Peter, that is a meal I mostly miss. Also wine and any fizzy drinks  is a no go area, although hopefully in the future I will be able to drink without pain 

    Sue x

  • Dear Sue

    You need to take each day at a time. We are all different therefore it is better not to compare yourself to anyone else as you might be even more frustrated. All I can say is that it does come back and you will enjoy food again. In the meantime, just enjoy the food you can have and enjoy and do not think about the food you cannot have YET. This will help you think in a positive way. Keep trying . It took me over a year to eat a banana (not the same one of course....). It feels amazing when you can eat again something that had been crossed out from your menu for a long time. You will get there. 

    Sending you loads of positive vibes. 

    Fab1

  • Thanks Fab1 it’s hard going out for meals when you can’t eat much and that’s why I get so frustrated but hopefully one day……

    Sue x

  • Hi Sue

    I was exactly the same it does improve. As Fab says she couldn’t eat a banana but for me a banana was the only fruit I could eat. Took me years ti eat a tangerine. But now there’s very little I can’t eat. I kept a did diary when my burning tongue was as yrs worse my triggers were acidic citric fermented spicy.  So I took all those out cheese I sure but had to have mild but now there’s very little cheese I can’t eat. There is hope and you’ll get there. I still make home made soup make a batch on a Monday that way I control the additives. Garlic and pepper are fine for me. I’m an odd ball spicy I’m still unable to eat but I’m as u says the oddity there 

    hugs Hazel 

    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 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Dear Sue

    I know it is very frustrating and I also got and get frustrated at times but I try to focus on the positive. (not always easy.....) 

    It is amazing that you can eat some food at the moment, you are doing extremely well. What do you enjoy eating at the moment?

    Fab1