Will I be able to swallow again?

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Hi again, I’m really panicking this morning and would like some advice from people with similar problems.  I have cancer of the tongue and lymph nodes on right side and have been using a feeding rig for approx 3 weeks since my tongue was too sore to touch with food. Today I tried to sip a Luke warm cup of tea and each small mouthful regurgitates back in my mouth. Please advise how long this lasts and should I just keep trying to swallow? We are meant to be having a couple of days in a caravan and I’m worried if I should stay home or just stock up with drinks and hope it soon improves x

  • Sue, you’ve only just finished CRT haven’t you? It’s really early days. Please try to be kind to yourself and not expect too much. 
    I had my NG tube in for six weeks after RT. I managed soft stuff gradually after that but even my oncologist said I was doing better than most. 
    Instead of swallowing liquid I did my swallow exercises. I was too frightened of choking. 
    Honestly it gets better but slowly. 
    If you find something difficult or impossible stop for a week and try again. 

    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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  • We are meant to be having a couple of days in a caravan and I’m worried if I should stay home or just stock up with drinks

    Take your drinks and peg feed. It will take the pressure off. 

    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
  • Thanks Dani I just needed reassurance as it really freaked me out this morning when I realised that nothing stays down. I am one week since RT finished and was told that it would get worse for a week then peak and gradually get better into the second week. Did drinks burn your mouth? Thanks again for your prompt response just what I needed xx

  • I am one week since RT finished and was told that it would get worse for a week then peak and gradually get better into the second week.

    That’s absolutely not true. The peak may be three weeks and an improvement you are happy with can be six months. The treatment has absolutely battered you. Your body needs lots of time to recover. 
    Even when you can eat better you can still expect radiation fatigue to slay you occasionally. All this is normal. Don’t worry. 

    Did drinks burn your mouth?

    Absolutely. I didn’t lose my NG till 6 weeks. 

    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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  • You are such a help Dani and I’ve now come to terms with the recovery period, thanks so much xx

  • Bless you Sue. Just hunker down and heal. Remember, this cancer is curable and early treatment failure very very rare. 

    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
  • Hi Sue

    Tonsil cancer HPV16+ finished Chemoradio early June 2023...PEG fitted....

    Feeding through the PEG tube was a lifesaver for me, started on solid food about 10 weeks after treatment finished, very small portions....mince and potatoes and whole milk, gradually increased portions as my swallow improved....late September I had the PEG removed and was eating full meals....takes time for taste and appetite to improve....now at about 90%....having a cup of tea and a couple of iced donuts as I post this!!!.....Guinness 0.0 was easy for me to swallow....added a few calories.

    Take care and best of luck

    Peter

  • I agree with Dani, please let your body recover from the treatment, i just used my PEG feeding tube until i felt comfortable with my swallowing, it took me a long time to even like the taste of tea and coffee again. Six months is the time when you should be getting back to some normality, i don't know where doctors etc get the two/three-week improvement from, take your time and try to get away for a few days in the caravan. All the best for your continued recovery.

                                                Chris x

    Its sometimes not easy but its worth it ! 

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  • HimSue It’s really early days  I was still ng tube fed for the first 3 weeks .it all takes time. Remember we say it’s a marathon not a sprint. The treatments brutal it’s hard it’s horrid but it’s killing cancer in our mouth/throats which are delicate ares at the best if times. I was one of the luckier ones I managed to,orally swallow 6 ensir3s a day from week 3 but took me all day .ive friends who have been peg reliant much longer you’ll get there but some days it’s 2 steps and one step back Like Danis says if yiu can’t manage something forget about it for a week then try again you may also get to a stage where one day you can eat something but try the next day and you can’t . Its all par for the course  be kind to yourself treatment takes us to hell then it’s a slow crawl back  

    Hugs 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

  • Hi yes drinks burnt my mouth for a long time even now at 6 years I can occasionally have an off day. It’s all par for the  course. As time goes by we get used ti the odd issues.. over the Kate 6 years I’ve met no ine who a few weeks felt on their way to recovery. I do wish the consultant s woukd listen to us patients and I include my own oncologist in this I spent half my time in the last 6 years telling them that !!!!

    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