Hi Everyone...I'm in need of advice

FormerMember
FormerMember
  • 7 replies
  • 155 subscribers
  • 1218 views

My father has finished an intense 6 weeks of radiation therapy treatment for cancer of the larynx.

The treatment ended 3 weeks ago and has been told the treatment has gone well. The only trouble is that he is being fed via tube through the nose and receives medication the same way.

He came home to us once for about 4 days before having to go back to A&E with pneumonia, we believe caused by the tube coming out and his feed going to his lungs. He is due to come back to us tomorrow but he is struggling to drink the smallest amount of water with out it hurting and causing him to start coughing.

My first thought was it his anxiety being the reason for not trying hard enough to swallow. My father is not one to be pushed. But the longer he doesn't swallow the longer the tube stays in and we are concerned the tube could become dislodged again.

So what I'm asking advice for is tips on how to get him to drink liquids also, I we expecting too much too soon.

Thank you in advance

Phil

  • Hi Phil and welcome. 
    what I would try is to figure out whether your father copes with warm or cold liquids best and to try sipping them from a spoon. Something with some body to it might be better. Ice cream, custard? 
    It would definitely be a good idea to give his CNS a ring and see if you can get some advice from his dietician. 
    What analgesia is he on? That would make a real difference. Three weeks after my radiotherapy I was still on morphine. 
    Can I add one thing. How did he get aspiration pneumonia from the tube getting dislodged? Surely he has been shown how to ensure it’s still in his stomach before putting anything down? 

    Let us know how things go 

    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
  • Hi Phil. I had an n g tube in fir 6 weeks in total 3 weeks before and after. Each feed we had to check the ph levels before feeding could start ? Hopefully he is doing that ? Like Dani says see what he can tolerate temperature wise for a period I could only  drink lukewarm things. As for tsp water I couldn’t drink that  at all too many chemicals I had to boil bottled water as well for drinks. Try him with custard or trifles I could slip down the inside of a custard tart plus poached eggs no other tyie of eggs just poached. His dietician should be able to help try contacting them.? 
    Keep in touch 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/

  • FormerMember
    FormerMember in reply to RadioactiveRaz

    Thank you.

    I should have explained that his tube had been dislodged and eventually came out during the night whilst feeding and we think some of the food may have gone to the lungs.

    He has had his tube re inserted 4 times now, so it obviously something he doesn't get on with. It seems to dislodge whilst having a coughing session. 

    We always check his PH levels before feeding and administering medication and flush through.

    He is on paracetamol and patches for pain. He had to come of morphine because of hallucinations.

    His feed also seems to cause diarrhea and sickness, so we are going to ask his dietitian if there is any to help firm things up. He's on nutrison. I will try custard and jelly but it's hard to actually get him to try.

    Phil

  • He has had his tube re inserted 4 times now, so it obviously something he doesn't get on with. It seems to dislodge whilst having a coughing session. 

    Oh your poor dad. 
    The same thing happened to me. I retched mine up twice. The second time I just took it out and threw it away. So I sympathise. 
    I do feel that older folk might benefit from a PEG rather than an NG tube. 
    Let us know how your dad gets on

    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
  • He is on paracetamol and patches for pain. He had to come of morphine because of hallucinations.

    That’s a real shame. Some people just can’t metabolise opiates. 
    Maybe ask for an alternative? I know folk on Pregabalin that seem to do better 

    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
  • With all the issues he's having with the NG I'm surprised they haven't considered a PEG/RIG; so much simpler to use, especially at home. Has that option not been mentioned?

    Certainly, last year when I was using an NG in hospital they switched me to a PEG before I went home.

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

    1. Oh dear your poor Dad. Hope you can get  an answer. It’s terrible when you can’t eat many of us know from experience. Some can manage on complan which to start with you can buy over the counter if you can get him to try. 
      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/