Post treatment!

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Hi all,

Well I am 5 weeks post 7 weeks rad treatment for base of tongue stage 1 hpv & peg tube removed 2 weeks ago, never used as drank the fortisips albeit uncomfortably, but .....the 1st week post wasnt toooo awful Rolling eyes....the end of 2nd week tho, bang!!! terrible ulcers left side & left back (hardly any during treatment) and still sore/dry(er), swollen throat.   I wonder if I pushed myself to eat too many things (?).   

5 weeks and seems bit better thank God, but still persistent ulcers left side.  Throat soooo dry during night. I've lost 10lbs post treatment as eating became unappealing & flippin impossible. Getting more easy now, soft mash etc

Is this normal?!  How long did it take you to turn a corner? Dragging me right down to be honest.  

 Tina xx

  • Tina

    Glad you are getting a little better. 
    I wasn’t happy with my eating till 12 weeks post RT. 
    I lost a little weight after it all finished but I made sure I had enough calories and protein to recover by drinking my Fortisips and forgetting about struggling with food. 
    I had one big ulcer on my tongue and that took ages to go. 
    14 months later there is nothing to see but my tongue is still tender. 
    Eat to live. Forget about enjoying it is my advice. You might find your taste waxes and wanes and changes in the future anyway. 
    Good luck with your recovery. 

    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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  • Thank you Dani.   I do eat somethings as make myself have very small portions, as I'm type 1 diabetic insulin dependent too but the fortisips are so full of sugar they send me reeling & out of control despite loads of insulin injected so try to only have 1 or so as supplement .   Juggling that is not easy either unfortunately.

    Yes I guess it's the long road & just have to keep going.  Thumbsup

    T.  

  • Hi Tina

    Sorry you're still having problems with ulcers, dry mouth etc but it is still very early days after treatment.  Things will get better in time but you may well find the path to recovery is not a constant one.  You can have some good days and then have a bit of a downturn for a couple of days.  But you will start to see some signs of improvement.

    All the best

    Linda x 

  • Ah. Of course. I remember you saying. Isn’t there a low carb high protein food? Maybe the stuff weight lifters take? 

    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 Dani

    Yes thats the one I asked for but still 18g of sugar per fortisip!! 

    It's difficult, I guess they have to be sugary re energy.   

    T x

  • Thank you Linda.  Yes, think I was praying for a kind of straight road!! At least I know it's not just me tho!! 

    T x

  • Can you add extra cream and butter to food you're preparing? (if you're not already doing so).

    Well done on eating smaller amounts often.  I still find it helps enormously.

    Linda x

  • Yes thanks Linda.  Am doing that with mash etc.  Good job I'm on statins Joy....Rolling eyes .  And gravy   xx

  • Hi Tina

     Unfortunately what you are experiencing is  about right has Dani says often it’s a case of eat to live-and not live to eat for a good while in many cases. I am now 20 month post radiotherapy and yesterday I had cauliflower rice ( ordinary rice in my case still sticks ) and a very mild home made green Thai chicken curry it was wonderful. It’s the little things honestly  at your stage I was  living mostly in diluted Ensure or for fortisip  is I lost most of my weight post treatment but it’s now mostly come back  albeit my body shape has altered !

    ulcers could well be you every tried too many different things in your mouth I likened it to being like a delicate baby’s mouth if a baby wouldn’t eat it neither would I .  I still occasionally get a small ulcers if I get anything too crispy in my mouth ie a fried egg that’s crispy on edges is a nightmare but a packet of plain crisps is fine. You will get there just baby steps. See if yiur dr will prescribe the high cal drinks 

    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/

  • Sorry Tina just seen type 1 diabetes how are yiu with eggs soft poached i found easy to east along with smashed avocado nithung added to it justvthe avocado 

    Plus well buttered crumpets just the middle of it edges too hard 

    h

    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/

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