New here with question.

FormerMember
FormerMember
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Hi,

I was wondering if anyone has had a similar experience and if they managed to overcome or remedy it. I'll go through my history.

Had Barretts Oesophagus for years. Was on omeprozol and yearly checks with the camera down the throat. In late 2017 went for checks and was told there was some problem so they wanted me back in to take a biopsy. The biopsy showed very early stage of cancer so was told I would require an esophagectomy. Before this happened I had to go through a load of tests and scans. It was found that I had two tumors in my throat and one on my tongue. It was decided that I should have the operation on my throat and tongue before the esophagectomy. This was carried out in March 2018. It was also decided that I would have radio therapy as a belt and braces back-up procedure.They told me that as the therapy may result in my having problems eating for a period, they would insert a feeding pipe in my intestine. I would have had to have one inserted anyway because of the esophagectomy. When I came out of the operation for this, I've never been in so much pain. It felt like Mike Tyson was hammering away at my stomach. Anyway, had the therapy int the May/June and the esophagectomy in the December 2018 and started on recuperation.My taste buds and saliva output were haywire, but managed to start eating various foods. Then a few of weeks before Xmas in 2019 I contracted a vomiting bug which lasted 5 days. Got over it and started to eat again. Then a week later, got it again, but for a whole week. Since then everything has gone down hill. My present "diet" consists of tapioca pudding with small amounts of various tinned fruits, Tescos whipped cream filled meringue, coffee and a bowl of Aldi's Cornish ice cream for lunch and more or less the same for dinner. This is topped up with the stuff I pump in overnight. I stick a couple of Xylimelts in my mouth at night. Eating other foodstuffs is a nightmare. For instance, any sort of meat in my mouth just breaks down in to fibres and all I can do is chew as I can't swallow it, it's that dry. That goes for any meat, including my favourites like prawns and scallops etc.. Mashed potato is like putting sand in my mouth. I do have the odd yoghurt and a suck on a Worthers Original, but that's about it. I'me HOPING that I may get my taste etc. back, but when I've asked, they've said it probably will, but there's nothing can be done as it's a result of the radio therapy. And as it's been going on over 3 years I'm not hopeful it will.

Has anyone else had a similar experience and managed to find a magic cure?

  • Hi superstrath. You have been through the mill. What a dreadful ordeal. I guess the infection set everything off as you seemed to be recovering. Have you had a swab for oral thrush? Just a shot in the dark here. RT does predispose and it can become chronic. It’s worth a try anyway and if there’s nothing there it’s a case of plodding on and trying different things. Try going back to the beginning and maybe experiment with poached eggs, tinned custard, rice and macaroni, yoghurt, liquidised soup but not tomato. 
    I hope you get somewhere. 
    Best wishes. 

    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 oh dear you’ve been  through the wars. Like Dsni says it may be worth asking for a swab to be taken to check for oral thrush. Many of us find thecsweeter  things easy to eat and the high sugar content can give our radiated mouths thrush. Which impedes our ability  to eat. 
    I found poached  eggs on smashed avocado fairly easy to eat. You could go back to ensures and try to build your strength bsck U.K. as it can be a vicious circle. Not eating enough ^good ^ calories makes you too tired to try.  
    good luck 

    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 Superstrath

    Sorry you have had such a difficult time.

    I know what you mean that meat and mashed potato becomes too dry, fibrous and gravelly even with gravies etc as this happens to me too. I have a very dry mouth as you do and find just adding extra fluid just doesn’t work for all foods.

    I have to live on pureed foods now and have found just what works for me. I decided I needed to try and make my diet healthier as I was also eating a lot of sweet foods and the teeth that I had left were beginning to suffer.

    I have found pureed baked beans with extra milk with some pureed vegetables works quite well for me. The veg that I have found that work the best pureed are steamed carrots, sweet potato, broccoli, pumpkin and cauliflower. You can vary these according to taste.

    Other veg are too fibrous and even pureed don’t seem to have the right texture.

    I have also found that poached eggs with runny yolks mixed with something like steak sauce works well. I have also added in pureed baked beans.

    I can’t manage meat either so the eggs and baked beans have worked out to be my best options for protein.

    I have also experimented with various home made soups made with vegetables as the meat even in soup is too gritty. I puree these and they work well.

    For something sweet I now eat weetbix with milk, pureed fruit and custard and this seems to make the right consistency for me to manage. I decided this was healthier than relying on too many sweet desserts although I occasionally have one for something different.

    Hope these suggestions may help you.

    Best wishes

    Lyn

     

    Sophie66

  • FormerMember
    FormerMember in reply to Sophie66

    Hi Lyn,

    Thanks for that. I've tried pureed foods but for some reason they sort of make me gag. Baby food does the same. I,m afraid the only thing I can think of is to bite the bullet and put ordinary food in to my mouth and keep chewing with a bit of liquid help in the hope that it stimulates taste buds and saliva glands. I'm supposed to eat as much as I can to make my stomach expand so I can do normal amounts of food. DIFFICULT!

    Regards,

    Geoff.

  • Hi Geoff

    Sorry that the pureed food makes you gag. Funny how our bodies react in different ways to different things. Does your dietician have any thoughts that might help? It is a tricky one but hopefully if you keep trying different foods and textures you will find something that will work for you.

    Have you tried tuna mornay or pastas with sauces such as macaroni cheese or spaghetti bolognaise (maybe not bolognaise as it is meat but some other sauce) ? They have texture in them but are soft so might work.

    My taste was also affected amongst  other things but I have now found foods that taste quite O.K. although they may taste differently to others. I have to ask my husband to taste anything I cook for others as I ‘m not sure if it is quite right and I am always worried that it could turn out to be a cooking disaster. Luckily he is a good taster.

    Best of luck

    Lyn

    Sophie66