Hello all,
Just wondering what's the average length of time to have an ng tube in place, please ? Had mine fitted on 9th July as I was struggling to eat and losing weight after surgery and 30 sessions of radiotherapy, which finished on 2nd July. Was admitted to Clatterbridge for 8 days (such a fantastic hospital !) and trained to use pump before being discharged.
It's been over a month now and despite having zero appetite, on the advice of the dieticians, I've been experimenting with trying different little bits of food (would you believe slow roasted peppers, leeks and onions were the easiest and tastiest ). However, I still can't manage more than a few mouthfuls of anything. It's not because of pain, my swallow is fine - it's just that everything seems to stick in my mouth and the quagmire of gunk in the back of my throat. I'm drinking lots of water, but the dry mouth and mucus is just horrible and I'm wondering when thing will improve. I've been told to try custard, jelly, Ready Brek, etc., which I have, but it just turns my stomach, so I'm still very much reliant on the feed pump.
I know this sounds dramatic, but at the moment, I can't imagine ever enjoying a meal again !
Would be so interested to hear your stories ☻
Ooooh I'm not that brave
Well do what Hazel did. Have your CNS sit with you in hospital? No need to wait to see dietician.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Don't know how you managed to eat bread - even with half a ton of butter
Toast is easier. Toasting it closes up the pores that soak up your saliva. Try a toasted tea cake.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi I couldn’t eat bread for a long time but as Dani says toasting it makes a world
if difference. I couldn’t eat the crusts but cheap white bread was fine toasted. Also Dipped toast inti home made soup.
pulling out the ng tube literally took a few seconds wasn’t painful we soaked the tape round my nostril then I gently pulled and up it came. Was quite smelly but cns nurse swiftly threw it away. I worked out a marks and Spencer fruit tea cake toasted with cheese cheddar mild in it lots of butter gave me 500 calories h cut it into quarters and ate towards crust find what works for you
Hazel x
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
They know I'm struggling to get enough calories in though, Dani. Most I've managed is around 100 or so a day. Think I'm going to be like Mickey and will have to stick it out for a while yet
You’ll be ok. As you say, stick with it. Experiment with food, even though it means the dog gets fat and don’t feel guilty about throwing food away.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Lindylou.
Four plus months post treatment, my OH is finally getting his appetite back and will now eat most foods I put before him.
I used Hazel's mantra - food is fuel, and he didn't want to be hospitalised again if he went too far down the rattle. I told him to imagine everything tasted like the finest steak; I'm not sure that tactic worked but when I suggested sirloin the other day, he gave a thumbs up!
Keep at it hon, you'll get there xxx
Hello Lindylou
It's really early days in your recovery, things definitely will get better!
I had an NG tube from the end of treatment for about a month, until I accidentally coughed it up then managed without it. I used overnight feeding, sleeping sitting up against a lot of pillows. Eating takes ages to come back but just keep trying what you can - maybe soup made with those nice veg, blended with some potatoes and cream for calories? It takes a while for food to become enjoyable again but I got there and so will you.
Sending solidarity, love & luck
Catriona
September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022. Now over 2 years all clear. See my profile for longer story
Thanks for your support, Catriona ! I actually managed some soup tonight and a tuc cracker - hoorah ! So that's a start (just wish food tasted a bit better )
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007