Food tasting rancid.

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I've had 15 sessions of radiotherapy with 15 more to go. My taste went after 10.  Everything I try tastes absolutely  awful. Even my toothpaste tastes disgusting.  I really hate to try to eat so using peg for nourishment.   I'm drinking 2 ltd of water as directed, and doing exercises for jaw and swallowing. Has anyone had this problem and will it affect my swallowing later. Also when will taste start to return.  I love food but cannot cope with it at the moment.  Any advice would be welcome.   It is really good to read about other people's story. Best wishes. 

  • Hi Martie. Your story is mine. I think it's fairly normal...certainly common

    I was tube fed for 8 weeks and it made absolutely no difference to my ability to swallow once the pain went and made eating possible.

    As soon as I could eat I did. In the early days food is simply fuel to let you heal. If I could get it down I ate it, no matter what it tasted like. It wasn't easy to start with. I remember sitting at the table shovelling porridge down with tears streaming down my face. But it got better and the tears stopped.

    Taste was acceptable by six months with improvements for a couple of years after that. It just varied day by day for a long time

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • Hi Martie

    Unfortunately as Dani says this is normal at the moment. I know for me everything tasted like sawdust (although I have never tasted sawdust) for quite a while and then it gradually improved. My taste changed after radiotherapy and I never quite got all my taste back properly. However I have found new foods that are quite acceptable now. I used to love chocolate but now it just doesn't taste right. It has a dull taste is the only way I can describe it. Yes food is fuel so when you feel able bite the bullet and just get it into you as quickly as possible. Then surprise one day some taste returns and then it is variable for a while and then settles down. It takes time and everyone is different you just have to be patient.

    Keep going you are getting there.

    Lyn

    Sophie66

  • Thank you for your comments, it helps to know that it is normal.  I try to force some porridge down but it is hard. Pain really setting in now so having oralmorph when absolutely necessary.  I  glad to hear you are now over it

     I look forward to that day. Best wishes.

    1. Martie
  • Thank you most encouraging. Best wishes.

    1. Martie
  • Hi Whst you’re experiencing is par for the course. I was slightly different as I never lost taste but had the opposite over accentuated taste. Everything g was overpowering. I was tube fed for 6 weeks then in recovery I took the study’s food us fyel and calories counted . I sinef fir 2500 calories snd 2-3 litres of water every day in recover. Food  became  fuel fir a good 15 months. Nie 5 years post  everything I’d good apart from spicy and some mature cheeses. 
    keep at it one day at a time don’t look too far ahead. 
    Hazel xc

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Pain really setting in now so having oralmorph when absolutely necessary. 

    Hi  

    That’s not the way to do it. 
    Pain is better controlled and in the end needs less analgesia if you stay in front of it. When your usual dose isn’t enough after a while then increase it. 
    I had oramorph every four hours and paracetamol in between by the clock, pain or not. 
    When pain broke through before the next dose was due I took a little more. When I started waking in the night to top up I was put in long acting morphine twice daily. It was an absolute game changer. 
    I won’t say I sailed through but I was comfortable enough to get on with some sort of normal life 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Thank you I will take your advice. Xx

    1. Martie
  • Good luck with the rest of the treatment. Xx

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Hiiii…. Same here!

    I had surgery last feb and finished radiotherapy last May, and food still tastes rotten, I’m told it will get better in time.

    i used to love my food, now I don’t enjoy anything I find it boring, I have a 5 stone weight loss! So I try eat just because I have to Weary

    just try eat what you can x