Base of tongue tumour

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Hello peeps.   
what a world we live in.  
10 weeks ago I didn’t have a scoobie

radio therapy starting Monday week.  
turned down the peg feed tube.   Was that a mistake??

be good to hear from anyone who’s been thru this and the swallowing thing

im so scared….

  • Hi Druid,

    So sorry you are in this position but we have all been there like you are now fearing the unknown … its normal to be terrified as you have no idea whats to come …. luckily many of us feel netter once treatmnet actually starts … as you are actively taking part in the process x

    Fisrt session can be tough as its all new but for most each days gets a bit better  as anxieties lessen .

    I made a playlist on my phone which really helped me get through the claustrophobia I felt . You can ask for radio also if you prefer . Try to take your anxious brain to some lovely memories or dream holiday etc .

    I had a pig( like a peg) tube which kept me alive as I didnt do well in treatment . Many people have a NG (very small tube up nose into stomach )which can be inserted if and when you need it.

    The wonderful people on this site are here to help and support to the best of their abilities and you need to speak to CNS or radiographers( your team) about any side effects worries pains etc)Keep hydrated very important plus calories ( nutrtional drinks if unable to eat enough ) make sure you keep on toop of oral routine mouthwashes etc exercises to keep muscles moving x

    All the best for Monday 

    Debbie

  • Sorry for your news, but you are in the right place and everyone is welcoming and support is great here. 

    I can remember how you are feeling as I was there 2 years ago, but still here happily eating and enjoying life. It is normal to feel scared, but listen to your team, let them know if you need anything, and focus…

    It will be bumpy, but you will get out of the tunnel ️ I didn’t have a tube, but I think many people have one. My team doesn’t practice, but i think it is a personal thing.

    Good luck on Monday, 

    Marta  x

  • Hi, Druid Welcome to the group, none of us wanted to join, we are all here to help each other.  It is all very scary, but you will feel better when you start your treatment, knowing you are on the way back to health. Don't worry about not having the PEG, if needs be, they will fit you with an NG tube. Don't suffer in silence let your team know as you go along about any side effects you are having; They will give you something for them. Any worries or questions, just ask, someone will always answer if they can. 

  • 10 weeks ago I didn’t have a scoobie

    Yep. That's the way it hits most of us right between the eyes.

    turned down the peg feed tube.   Was that a mistake??

    Probably not. My advice would be to not fight with the pain and ask for a nasogastric tube when you can't swallow. My Trust policy is to offer an NG tube reactively. I couldn't swallow a thing by the end of three weeks and mine saved my life

    For some people it's almost a matter of honour...of not giving in and they fight through awful pain to avoid having a tube. Honestly if that is the only way you can keep your head straight then there is nothing wrong with that but life is so much easier if you do help yourself.

    I remember going through my consent form with my oncologist and saying that I would try to manage without tube feeding. He said that unfortunately most people don't and that he would really fry the back of my throat. He did but he cured me and on Thursday I celebrated my last review with too much wine and a cheeky exchange with him on T**tter.

    It is scary and there is no doubt treatment is a real challenge, but side effects can all be mitigated. You can be kept comfortable. It doesn't last forever and it works. Cure rates are in excess of 90%

    Stay with us. There is a lot of help and comfort here

    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 I dudnt have s peg but did consent to ng tube if needed snd boy I needed it end of week 3. I went from eating ok ish ti bang overnight I couldn’t swallow not even water without being in pain. Pop on here for advise 

    regards 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  

  • Thanks guys.   Not being alone in having to go thru this is a great comfort.   The fact that you are all still here is a greater comfort still!! Well done to all of you     you are an inspiration.  
    what about those moments of “I can’t do this any more”

    where do you find the motivation to continue.  
    I have to drive 60 miles each way for treatment.    

  • Hm, sorry to hear you have yo drive so far, BUT that can be your motivation Wink 

    i would just say “everything you do, try to reverse to positivity”, that was my way…

    i make fun in my head with everything what i experienced… i am sure you will find your way. It will be hard, but as we all did you are on the right path Pray 

  • Hi you may need patient transport as treatment progresses as opiates and driving don’t mix. I had my hubby he drive every day no wzy coukd I have I dozed in car both ways for last few weeks. Just trying to pre warm you if you can’t arrange anyone to take you. Have a word with your dedicated cancer nurse. Some days we were 90 mins drive others 50 mjn traffic dependent. My chemo day included radiotherapy and they were 10 hour days. 

    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  

  • what about those moments of “I can’t do this any more”

    Me? I had a meltdown in the bathroom at night when husband was asleep then took a deep breath and got on with it. 

    where do you find the motivation to continue.  
    I have to drive 60 miles each way for treatment.    

    We have no choice. The alternative is unthinkable. 
    Talk to your CNS about arranging transport if you don’t have somebody at home. At some stage of the treatment you won’t be able to drive yourself and are likely to be on morphine. 

    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 Druid

    When I had the worst moment of 'I can't do this anymore' I was in a  real state emotionally. I spoke to my lovely consultant and he was so supportive and encouraging, just what I needed to keep me going.Unfortunately I had not found this forum at this time and felt I was going it alone.  Words of encouragement really help. If you get to that stage come onto this forum as there will be heaps of messages of support and encouragement that will see you through. It can be a tough road but if you take it a day at a time you will get there.

    Lyn

    Sophie66