Tongue cancer

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Hi just some general questions seven weeks after finishing RT for stage 1 tongue cancer and head neck dissection..I was wondering if anyone wakes up every am feeling tongue and cheek swollen until they move it about and do their exercises it feels a little less swollen. No two days are the same. One day I look less swollen in cheek then few hours later I could feel swollen. I feel like I'm going two steps forward and four back. Is this all normal. My neck feels the same even though I do exercises continuously throughout the day. Does this settle over time. Any other advice would be appreciated. Thank you .

  • All this is normal. I promise. 
    I used to wake unable to speak because my throat was swollen with lymphodema inside. A cup of tea and some swallowing and jaw exercises was needed to get me croaking. I used to have to double or triple swallow to get that first cuppa down. 
    Thus recovery is a marathon and the assaulted tissues take months to settle. Stick to your exercises. They are crucial in preventing fibrosis. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • Hi perfectly normal just keep doing the exercises. They like the toothpaste are for life. Both Dani and u still do ours religiously I’m 6 years post and doing them while I type thus. They become part of life. 2 steps forward 2 back will happen  for a good while. 

    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

  • Oh thank you  Dani I appreciate this. It's all new to me. I feel some days no matter how often I exercise it makes no difference. They don't tell you all this during RT. Does the swelling inside cheek and the tongue and the pain eventually go away. I'm on no painkillers except claregel and bioextra. I spray the gelx as well .feel like it's been such a long journey since first biting my tongue in Jan. I actually bit the cancer not my to tongue. My consultant said biting my tongue saved my life. 

  • Also feel my speech is slurred at times compared to after head neck dissection when it was so much clearer. Will it return as well.

  • Thank you Hazel. It's good to know all this. 

  • Hi also wondering about the mouth wash. My hospital dentist before RT said special toothpaste am and pm then mouthwash lunch and dinner. Although I use ordinary toothpaste and mouthwash as lunchtime which she said was ok. I'm using endakay mouthwash as couldn't get the one on prescription but pharmacy said it's substitute. My question is any other you recommend as endakay is very stingy ATM on my tongue. Thank yku

  • Hi it does go down just takes time. I’ve a friend who has a slight lisp but she had a free flap partly replacing her natural tongue. 
    my speech is the same as it was. I can get a tired voice if I talk too long 

    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

  • It will get better. It just takes time. I use BioXtra mouthwash which has fluoride and is made specially for dry mouth. I get it on prescription from GP. 
    If you are in pain then take something for it. Even if it’s just paracetamol. I was in morphine till 12 weeks then paracetamol for another 4 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Oh thank you. I have been on nothing from week three after RT. At my six week check up a week ago my oncologist never asked me about pain relief.