1 year on still struggling with eating

Hi All

I am 12 months post treatment for stage 4 tonsil cancer and secondary lymph nodes. I was dependent on the PEG for 6 months. I am really struggling with eating, I have no interest in food, I have really painful teeth and even though my taste buds started to come back they have gone again. 

I have a mouth full of ulcers, iv been to the dentist and can only describe the feeling of eating is like having holes in all my teeth, the dentist said my teeth are fine.

I can't open my mouth very wide and can't bite, I am basically living off redybrek and rice pudding. I have been back at work 8 months but are so tired and get upset easily. I have reduced my hours but need to work for my mental health and I enjoy my job. I am really struggling to maintain my weight and have lost nearly 3 stone. The hospital are monitoring my weight. 

Is anyone else struggling the same?

Thanks in advance

Sue xx

  • Hi Sue try to  get the mantra food is fuel. In real terms it’s been 6 months for you  ad the first 6 months you were peg feeding. It took me a good year to have any I treat in food I stopped my n g tube 3 weeks post treatment cas I coujd swallow. I forced myself to eat 2500 calories most days. I too had no interest I just took the mantra eat to live not live to eat. I fortified everything with high calorie double cream in soups on desserts full fat milk.  I also found eggs poached on toast lord of butter a giid standby. I forgot about 3 square meals snd used to gave 6 smaller ones. For now don’t try to eat as yiu did before. I reverted to nursey type food . You need the calories to aid recivery once you get that balance everything else follows. It’s not easy but now apart from  spicy foods there’s little I can’t eat. 

    Give these links a read as for teeth can  you br referred to dental hospital ir your max fax sept 


     Liquid diet ideas 


    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  

  • Hi Sue...in my opinion if your mouth is still in a mess you need to insist that the dental hospital see you. Monitoring your weight is not the same as doing something about the pain you are in. You need to get speech and language involved in sorting the trismus you are suffering or it will only get worse

    Don't wait for your next review. Contact your CNS straightaway and have your GP check you for thrush while you wait.

    Hope you get somewhere quickly


    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 


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

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  • Hi Sue

    You need to get the ulcers sorted as eating will be very painful so no wonder you don't feel like eating. You should still be having 3 monthly checkups with your surgeon or medical team so ring and get an urgent appointment and discuss with them. The Macmillan nurse may also have suggestions. Once the ulcers are under control things should be a lot easier. There are medications that you can paint on your ulcers to deaden them before eating. Ask your doctor or chemist about it. This is what I used to do during radiotherapy. I had jaw cancer not tonsil cancer but had lots of ulcers during radiotherapy. Is there something in particular that you can pin point that is causing the ulcers?

    You can get a fairly balanced diet eating very soft or pureed food as long as it doesn't stir up the ulcers. I am on a mostly pureed diet and have limited mouth opening. I have found that using a blender I can blend steamed soft veg with something like a ready made shepherds pie and get lots of nutrients that way. I also have 3 fortisips a day. You can blend lots of soft or stewed fruit mixed with custard or yoghurt and this also gives you lots of nutrients. Choose fruit that is not acidic so it does not aggravate the ulcers. I mix pureed fruit with weet bix and fortisip. Try tinned fruit as this may not be so acidic and my dietician said it was just as healthy as fresh fruit as long as it was packed in juice and not syrup. Sometimes I boil an egg and just eat the yolk which is runny.

    It takes a while to get your head around eating differently but once you do it becomes easy. However sorting the pain issue out is the biggest priority and then the food issue will be much easier to manage.

    Hoping that it can be sorted out quickly.



  • Hi, sorry to hear you are still struggling with a painful mouth. I had terrible ulcers during and after treatment too, (chemo radiotherapy in 2014 for base of tongue cancer) and have had them since, they think it’s due to radiotherapy damage. Hygienist at the hospital suggested Gengigel Forte which you can buy on line, or a cheaper version, just Gengigel, which you can get in Boots and Superdrug. I found they both helped.  When I was just post treatment, the only thing I could eat was tinned peaches (in syrup as the juice version was too acidic) with custard, then I moved on to half a banana with custard. But I hated eating and had to force myself to do it, still do sometimes.  I eat lots of homemade soup, jelly whip, eggs, cream cheese, just bland, soft foods which have calories and nutrients.  Definitely ask to see the speech therapist. I’ve had more surgery on my tongue and throat in the last 18months so I’m struggling to eat again. The S&LT has given me exercises for swallowing, trismus and tongue strength. Keep at it, keep pushing forwards, try different things. It’s horrible when everyone else is enjoying normal food and you’re not able to, but it’s only one part of life. I’ve needed to refocus on other things that I’m able to do that don’t involve food. I hope things start to improve for you soon, best wishes xx

  • Hi Peach Flamingo

    Sorry to hear that you are struggling with eating again at the moment. Cancer, it's the gift that keeps on giving!!!! Sounds as though you have it in hand though. You are so right about concentrating on things other than food. I have got to the stage where it doesn't worry me anymore although in the early stages it was hard. Your diet sounds a lot like mine although I have recently been able to upgrade to pasta, rice and eggs. Taste is never quite the same again but that doesn't mean you can't enjoy new flavours. I have found quite a few and lost the taste for quite a  lot of more unhealthy foods so that is in my favour. When I think about it I probably eat more healthily now than I ever have even though it is in a more mushed up form.

    Wishing you all the best. Time definitely does help improve things.




  • Very similar. Can't eat 11 months post treatment. Can't open my mouth, pump feeding. Still can't taste, no salivary glands........the joys of throat cancer!  All things being equal, I am having a surgical procedure next week, crycophangeal myotoma to try andcsort a musclevspasm and damage done by  chemoradio.  I don't know if it will work but I have no choice but to see.  I'm terrified tbh.  Keep going well getbthere!  It's certainly a huge battle.    X