Frustration with food

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Hi all

I’m now just over 9 weeks post CRT  treatment for hpv+ tonsil cancer.  I’ve been managing to eat from week 3 and been doing well. However, I’m now struggling to find foods that I can eat that I enjoy. The novelty of soups, fish pie, cottage pie, pasta with cheese sauce, eggs, tinned peaches with custard and rice pudding etc is wearing off.  I’ve managed a few sandwiches and a small roast dinner and even fish and chips but they needed to be washed down with copious amounts of water and weren’t particularly enjoyable and are not the type of foods that I would really eat prior to diagnosis. 
I’ve lost 10lbs in total and managed without a feeding tube but I’m struggling to put any weight back on. I’m having a couple of fresubins daily to supplement. 
I just want a prawn salad but not sure I’d be able to manage it.   I haven’t dared try anything tomato or citrus based as I’m nervous it maybe too acidic at this stage.

Do we ever get back to eating the foods we used to enjoy? I feel very envious of people with saliva! You don’t realise how important it is until it’s gone Disappointed

  • Hi Ally, in answer to your question, yes, you will get back to eating how you used to, how long it will take nobody can say that. At 9 weeks post treatment you are still early days in recovery, so what you are able to eat is very good. Just keep doing what you are doing, try different things you will find that your taste can change from day to day. It's all trial and error, keep at it you will get there.

    Ray.

  • Hi Ray

    Thank you. That’s really good to know. I know it’s early days yet and I’m being impatient.  I’m lucky to be eating what I am at this stage. Gives me hope x

  • You’re doing much better than I did. I would have been cock a hoop if I been able to eat a quarter of what you’ve managed. Whatever food I could get down I just did. Food was fuel and just part of recovery. 
    Our metabolism goes into overdrive as part of the healing process which is why it’s hard to put on weight. I could eat mountains of high calorie stuff for 2 years without gaining weight. It was a bit of a shock when it started creeping on. 

    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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  • Hi Dani

    Thank you.

    I’m trying to think of food as fuel but I don’t have much of an appetite and never seem to feel hungry. I’m just having small portions and then topping up with a fresubin. 
    Just taking it one day at a time x

  • I’m trying to think of food as fuel but I don’t have much of an appetite and never seem to feel hungry. I’m just having small portions and then topping up with a fresubin. 
    Just taking it one day at a time x

    Yes, just like me. Still by a year I was a different person. Don’t worry. It will come

    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

    Community Champion badge
  • Hi  As the others have said its really early days although yiu might nit think so. Just keep doing what yiure doing I had no appetite at all but food was fuel and eat to live not live to eat were my mantras. I got very little pleasure in food but needs must was my attitude. Just a small,warning  you might hit the wall and find out what you can eat one day the next you won’t be able to. My advice on that is leave it for a few weeks and try again. . It’s a common theme that happens to many if us. I always found breakfast was easy then instead of lunch and tea I had smaller plates of food several time a day anything to get the calories in I was eating 2500. Calories  a day including 85 g of protein and for 15 months didn’t put weight in but managed to maintain weight. 
    Tomato  and cirrus foods will come but a tad early yet just keep doing what yiure doing. I used lukewarm herbal tea to aid food to go down. 

    hugs Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  7years  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/

  • I loved nothing better than a decent curry...It was a year after finishing treatment before I could manage a slightly spicy curry, didn't particularly enjoy it, kept at it , escalated my choices to the hotter varieties...now enjoying most...even Vindaloo...washed down with alcohol free Guinness.

    Michael

  • Hi Michael 

    I love a good curry too and partial to Thai food. Maybe in time it may be possible again Fingers crossed

  • The answer is that we are all different.  Some regain almost everything others only partially so. 

    There are some things I won't /can't eat as I find swallow to difficult for them.  Mainly solid meats like roast beef, but lamb and some pork is OK due to the fat content.  Pasta is great, but pizzaYumot.  I love spicy foods but they are now off the agenda.  Plain cheddar I can't eat, but melted on toast Yum. Strange! 

    Having said that I have a good diet - maybe not one agreed with by purist nutritionalists, but I enjoy it and eat well.  I also eat out. 

    At your stage experimentation is key.  Expect things to change over time.  What I can eat this week, maybe I can't next week. Then some time later I can once again! Also little and often is a good maxims eating. 

    Peter
    See my profile for more details of my convoluted journey
  • Just a note on tomatoes : it seems they are the only thing at the moment that taste as they should for me. I am 5 weeks since end of radiotherapy. Take care. Izzy.