Hi

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8 weeks out of treatment for base of tongue. 30 and 2.

struggling a little tO maintain weight. Haven’t used RIG for 3-4 weeks and due to be removed sometime soon.

have others had same situation and if so how did it play out?

with thanks.

  • Hi Newlife

    Do you have fortisips and scandishakes? Scandishakes are 650 calories, I added double cream and hot chocolate to the unflavoured ones, managed to get it to about 1300 calories which I had every day along with 4 - 6 fortisips, could only tolerance the mocha and banana ones for a few weeks after chemoradiotherapy finished.

  • Hi Newlife

    Congratulations on finishing treatment. It takes a while to recover as the treatment is brutal and maintaining weight can be a bit of a challenge for a while particularly with a dry mouth and taste changes.  You have to think of any foods that have a lot of calories such as full fat milk and cream and add it into your food. This will be the only time in your life when you will be able to get away with it. Definitely keep drinking the Fortisips or whatever drink supplements you have been prescribed. I add Fortisip to my weet bix or to soften a slice of sponge cake and then add pureed fruit and custard. You can add yoghurt to soups and make smoothies out of full fat milk and add in yoghurt,or icecream. You can eat small meals regularly rather than trying to eat large ones as that can be challenging. It took me about a year before I managed to maintain my weight but now it is going well. You don't necessarily eat for enjoyment at this stage but to maintain or gain some weight. Get some advice from your dietician too.

    Best wishes

    Lyn

    Sophie66

  • Hi  

    Im sure we are in a hyper metabolic state for quite some time. I could eat anything I wanted for 18months without putting weight on and if I had a bad eating day I could easily drop a Kg. So it’s just a case of packing in the calories, but sensibly. 
    At 8 weeks you are really early in your recovery. What are you managing 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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  • Hi DeeDeeDee,

    many thanks for this. Yes, Enshakes are the brand I have. I’ll try to think of hi cal drinks to supplement further.  Thanks again - appreciated.

  • Hi Lyn, many thanks. Good to know it isn’t just me. Great ideas. I’m sure I’ll be able to find space for another Jaffa cake or two!  Appreciated.

  • Hi Dani, many thanks for the perspective. I’m on Weetabix with banana, sugar and honey, cream of chicken soup, and maybe some mash and gravy. Plus one enshake a day.  Sometimes some apple pie and custard and/or jelly babies or some fox biscuits.  I think I have the right idea but still diff to get the food down when more substantial fare. Thanks again.

  • Don’t worry about it too much. These things can’t be hurried. You can always add more enshakes. Make your weetabix up with a shake instead of cream 

    Things to try are pasta ( though not with tomato sauce). Cook the pasta a little longer to make it softer. Tinned macaroni cheese is easy too. Scrambled eggs with Philly mixed in to keep it soft. Add butter and cream to everything. Dunk biscuits in sweet tea. Cheese on toast, even if you leave the toast but u found cheap thick white bread toasted went down well with warm tea to wash it down. 
    The internet is awash with recipes for high protein shakes. Have a look round. 
    Youll get there. At the moment its a chore and you’re eating to get well but it will get better 

    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 New life, I had a RIG in place for 4 months. The Dietitian talked me through reducing my feeds and increasing my food intake. They wouldn't take it out until I'd maintained my weight without it for few weeks. I added double cream to anything I could, changed everything to 'full fat' and ate small amounts. I felt like I was having to eat every hour or so, so I gradually increased amounts at each sitting, took me over a month to get to eating 4 times per day. And snacks. Still hard some days so I take a drink supplement when I know I don't have enough calories nor nutrition in. You can check out my profile (towards the end) where I've documented my journey. All the best Tina

  • Thanks again Dani. I’m taking the point about the long game. Having to move slow while the rest of my world continues to move fast isn’t an easy one to get used to. Still, that’s what it is!  

  • Hi Tina, Thankyou for replying. I read your blog and see how brave you have been - I guess you had to be. So sorry to read about your brother. I shall try some of your suggestions. Every respect for the journey you’ve been on.