Fed up

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12 weeks post 35 rounds radio 2 rounds chemo for base tongue cancer spread to neck lymph nodes. Still on morphine. had scope last week to see why I can’t swallow. This showed lots of swelling and redness, have been advised to wait until this goes down before trying any fluids. Feel like I’m never going to eat or drink again. Have a Peg at the moment which I find so depressing. Also have lymphedema under my chin which oncologist said she would refer me for but no luck yet. 
Just looking for anyone that’s been here and eventually ended up eating again this far on. 

  • Hi. At 12 weeks I was on morphine still. If you have lymphodema in your neck there is likely lots inside as well but it will get better. Are you doing swallow exercises? They will help the swelling. 
    For your neck I have a simple video in my blog that might be of use till you get your clinic appointment 

    There is also a great tip from Peter. I shall try to find it for you. 

    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 so much for your reply. I will look on your blog for the video and give that a go, sounds really helpful. 
    Carla 

  • This is a really good thread that has some useful links.

    CLICK HERE

    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
  • Coming up for 3 years since CRT finished.

    Many of us thought that eating, drinking and enjoying food was a thing of the past, far from it, it just takes time and perseverance, I had to challenge myself with different foods, starting with small portions then gradually building up. It took about a year before I was fully happy with my taste and appetite.

    Michael

  • Hi Carla,

    I went through the same treatment for the same diagnosis,I too were thinking the same at the time ,but things do improve. I know it doesn't seem like it now but the swelling does eventually start to go down ,I was lucky enough to be referred to a lymphodema nurse ,who showed me how to massage the neck ,she also gave me a stretchy collar to wear. My lymphodema went away eventually ,but not over night ,you have to work at it and let time heal. Swelling was visible in my throat for nearly 12 months , and I do get the occasional swelling now. Like others on here say ,recovery is a marathon not a sprint. 

    12 months on and I still get problems with eating ,but nothing like it was ,and hopefully I'm still improving.

    You will get there ,trust in your team ask them any questions  and use this site ,it helps me enormously.

    Always available for a pm 

    Best wishes Mark 

  • I also had lymphedema under my chin...My CNS taught me how to massage the area, worked a treat, still massage daily

    Michael