Sore !

  • 48 replies
  • 29 subscribers
  • 1630 views

Hi everyone, can anybody suggest anything for burning/sore tongue & sore soft pallet, the mouthwashes I have don’t seem to be helping as they sting even with extra water , painkillers not really TOUCHING it either .Week 1 post radiotherapy & never felt as groggy as I do now , just when I was starting to eat a bit of yoghurt orally too , everything seems to sting .Does this settle down at all ? HAZEL you were right , as usual XX

  • All I did was up my painkillers and not challenge my mouth with any food. It gets better. I was eating lots of solid food by end of week six.

    Have you tried gargling with soluble aspirin (don't swallow) half an hour before eating. You can do the same with oramorph and antacid oxetecaine but you can swallow those

    I had to ride the wave. It did ebb.

    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 Dani yes I’ve started to take my liquid codeine & oramorph, everything else stings , I’m also doing the aspirin & raspberry mouthwash but nothings really helping , are you talking 6 weeks post treatment ? Xx

    1. Aly14
  • Yes. By six weeks I was eating a lot of soft food. But I was careful to take it easy and not tackle too many new things st once. Poached eggs were good. Scrambled eggs with Philly mixed in to make it soft. Try smashed avocado with a banana squashed in. Squash the banana in the skin then squeeze it out. Mix that in. 

    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
  • I hope you’re right Dani as I’m going away in 8 weeks & I don’t want to take this tube with me .Isn’t it silly , if they could give us something stronger for our sore mouths /tongue etc . I’m sure I would be eating something by mouth by now . I’m haven’t even been told how long the soreness will be there to be honest recovery has been worse than treatment for me ( apart from that 1 chemo ) xx

    1. Aly14
  • Aly you’re on opiates. There’s nothing that knocks out the acute pain without sending you to sleep. You need time. Lots of it. I doubt your stomach tube will be out by then. You can travel with it you know. 

    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
  • I don’t really want to travel with it I want to be eating a bit before then hopefully, I’m only holidaying in this country but I’m going to try my hardest to get it out before then xx

    1. Aly14
  • Biggest tip from me for tube removal is keep your weight up. I was eating again 2 months post treatment (about a year ago) but it was hot so I was eating salads week before my 12 week check and lost too much weight due to the hypermetabolism, so had to keep peg for another 8 weeks with regular dietician checks!! 

    Glad treatment finished for you, big milestone. Next for me was the 6-12 weeks post treatment as I slowly emerged from my opiate brain fog. 

    Just keep being kind to yourself, it starts getting better soon. 

    Gill

  • Hi Aly. Sorry but yes recovery is a marathon not a sprint. Please try not to introduce c too many thjngs into your mouth. I was reliant on n g tube for 3 weeks totally in recovery then started slowly swallow orally  the ensures 6 a day that allowed me to recover and try to introduce food slowly. We flew to Spain week 8 along with a case full of ensures . I was in our own apartment so could eat and try at my own pace. Remember your mouth throat has bern poisoned and burnt to an inch if it’s life. To get rid of the cancer it’s brutal but deffo worth it. Just pace yourself there is no short cut to the mouth regenerating. As many on here can confirm. 
    The peg may have to go away with you hospitals rarely take them out unless you can prove to them you can maintain weight for a good period of time   
    gelclair diluted as rinse around your mouth May help. 
    The first 2 weeks I slept  fed via tube  did oral hygiene and then repeat.  
    by week 3 end if I was orally drinking the endures it wasn’t easy. 
    i started off poached egg on white toast easier than bread and by week 6 I was 50/50 endures  snd food. 
    m you need nutrition snd hydration the get better. 
    you may also be feeling radiation fatigue which has a law of its own. The only answer to that is listen to your body and sleep. Msybe re read my blog to get an idea of how hard it was for all of us. 
    you will get there but as I said at start it’s a marathon rarely a sprint. 
    i found food and sleep got me there. 
    my psilillers I didn’t start to reduce until week 10 I took everything with me on trip to spsin. I rode my bike 8 km that trip now I can do 60 km a time but was hard work getting there. 
    m Sorry I can’t wave a magic wand treatment is easy in a wzy  as you’re seen by medical people every day.my oncologist said he would cure me but apologised that he would take a year out if my life he did both  the year didn’t matter in scheme of things but the cure is priceless . 

    Hugs Hazel. 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • I came off all pain relief as I was no longer in pain , I’m hardly on any now as it’s not really a pain it’s just sore , I took painkillers yesterday but still felt sore xx

    1. Aly14
  • The soreness is pain induced due to treatment hope you took a phased withdrawal from opiates A week is extremely early to come off the soreness is caused by the burning of radiation 

    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help