Head and Neck

  • 5 replies
  • 153 subscribers
  • 667 views

HI all 

New to the group.

Was diagnosed with tonsil cancer as primary and had a lump in lymph nodes in neck ( sorry only just learning the cancer lingo ) .

I know compared to many i am lucky but it doesnt feel like that today ! 

Have had ops to remove primary and areas of lymph node and am 2 weeks into radio therapy . To be honest i m really struggling with the thought of the side effects getting worse . currently can eat porridge etc with the aid of paracetamol but wondered if there were any tips or advise anyone could give ? 

  • Hi Marks. Welcome to the forum but sorry to see you here. 
    Yes you will get progressively more sore but background pain is manageable with decent analgesia. Don’t suffer. Tell your radiographers how you are feeling. You’ll get various mouth preps if you haven’t been given them already. Difflam about ten minutes before trying to eat helps as does soluble aspirin ( spit that out) soft food and high calorie smoothies are the answer. You can try poached eggs, Mashed avocado and banana. Cereals with added extra cream. Soups with butter and cream… not tomato. 
    Your team will give you high calorie drinks. They are a bit sickly sweet but they will keep you going. 
    Swallowing got impossible for me so I had a nasogastric tube in the 4th week. It saved my life. 
    You’ll get there. 
    Best wishes 

    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
  • Hello. I had primary in right tonsil & spread to lymph node in neck. Hpv 16 positive. I had bilateral tonsillectomy, plus part of tongue removed. Then had PEG feeding tube fitted prior to 6 weeks of chemoradiation. 6 x chemo & 30 x radio.By week 4 of treatment I could no longer eat. I then was ‘fed’ via a pump & my PEG each night. Definitely take the pain relief on a schedule. Use the mouth washes etc You are eligible for a prescription exemption certificate from your GP. Feel free to ask anything. This forum is amazing. 

  • Hi Marks welcome from me. As Dani says painkillers are the key cancers  bad enough but cancer and pain no. If eating gets too hard ask for an n g tube ut was my lifesaver from week 3 I had it in for 6 weeksu  in total. Around week 4 the pain plateau  but  does last for a good few weeks after treatment.l at my worst inwas in 8 x30 mg codomol and up to 40 mil  mil,oramorph. You need sufficient  nutrition and hydration all the way through. Eggs are good poached etc. 

    I am now over  years post radiotherapy for tonsil cancer and several lymph nides happily living a great life now.

    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

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Mark. Sorry you find yourself here. I too had tonsil cancer and lymph nodes removed and eating became a struggle during and just after radiotherapy. I found Oxetacaine gargled  before eating was really helpful. Then Difflam afterwards to numb things down again.  Good luck and keep in touch. It is tough but it’s worth it. 

  • This forum is amazing. 

    You are amazing. 
    We are all amazing Wink

    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