Oral tongue cancer

Hi all you lovel brave folk , I'm now nearly five weeks in from partial tougue removal and neck dissection for lymph node removal , I seem To  have hit a brick wall , still experiencing fair amount of pain in mouth and neck and shoulder ad arm which is giving me such grief with hand puns and needles to , I feel should be not taking pain,killers that much now   But to be honest I'm needing them more Di evdays than others   I'm doing well they tell me and the good news is I'm now knowing cancer is not in nodes or tissue so no further treatment needed   This is the best news ever , but yet I'm feeling very tearful and struggling with going out some days worse than others , I'm sure all normal but just wondered if anyone else felt like me with pain and emotions , and feeling like every thing round me when outside is extremely louder and confusing , I'm usually  very out going person   But feel quite strange and need to pull my self round   Somedays im not to bAd can anyone help xxx

 

 

  • Hi Noonie64

    I'm sorry to hear that you've been struggling recently. From my experience of reading through the many, many posts here - what you're feeling is entirely normal. 

    You've been on such a rollercoaster emotionally and through some fairly major surgery. Now you have the relief of knowing that no further treatment is needed it's no surprise that you're feeling like you've hit a brick wall. 

    Be kind to yourself Noonie. It's good to hear that the hospital are pleased with how you're recovery is progressing. Don't feel that you should be better  - take all the time that you need. Don't over do things. And that goes for how you're feeling emotionally as well. Take the time that you need to rest and recouperate. 

    We've some informastion on our website about coping emotionally but if you'd prefer to talk to one of our nurses then please do give them a call. I'm sure that they will be able to offer some support and advice. They're available Monday to Friday, 9am to 5pm on 0808 800 4040. 

    I hope that things settle for you over the coming weeks Noonie. Keep in touch and let us know how you're doing. 

    Best wishes, 
    Jenn
    Cancer Chat moderator

  • Hi. Firstly i am not very good at messaging sosorry if this is abit of a ramble.I am nearly 4 months from end of treatment and fortunately the all clear.Similar tongue and neck.I know you should feel elated but i think that is when the "what the heck just happend"! hits you.The trick is, whether we are good at it or not is that indefinable word that is so overused -PATIENCE.Keep on with the pain relief its not wrong to need it ,especially this soon.The pain and wierd sensations change all the time for no reason i find, i think we have to believe that is improvement! Ifound exercise and making strange loud noises helps.No need to say pull yourseelf round.Take one "tiny" positive thing at a time and give it a "huge" tick! How are you with eating and speaking?Did you, like me ever think you would say "my tongue or what isl left of it is tired .I understand. try to keep positive this feeds recovery we hope. Take a friend to somewhere you would really like to go no matter where!

  • That is by far the longest message i have ever sent .Phew iam now sweating and exhaueted ,need to go on a techno course Regards

  • Thankyou so much , I’m hoping g to get some physio soon , so I’m hopinh this will help pain in shoulder , unfortunately I’ve developed a weeping not very nice infection behind  ear lobe and love itself they think from lymphatic fluid , second lot of antibiotics , feels like a big lump but because my ear still numb it’s difficult but it looks awful as hubby took picture to show me , my tongue still numb to in side they have removed it , and my eating still not at its best , but better than it was , but like all you oral cancer sufferers taking it day by day now and praying this infection clears up , love to you all and thank for those who have replied it means the world xx

    lymphstic 

  • Keep letting me hear about your recovery and if you ever have the need to shout,scream sing,swear ,dance or anything just  do it, cos I will  understand xx bebe