Anyone managed without no feeding tube?

Hi  Sarah for  ng tI’ve  you aren’t asleep  when it’s fitted. I was sat on edge of bed when a very quick and slick procedure took place. My ng tube was my lifesaver. I was like you fine until end of week 3 when I went from eating and drinking pretty much normally to wham I couldn’t sip water without it burning. Medication as well. There are a few who manage but to be honest not many. . Talk with oncologist   I was one of the lucky ones I wasn’t sick at all during treatment. 
Hazel 

skft said:

Can this be doable? Advice would be extremely helpful.

Hi. The answer is yes. There are quite a few folk who by sheer grit and determination did. 
Im nowhere near strong enough so gave up fairly quickly. I hate pain and hadn’t the inclination or impetus to fight it. Just don’t lose too much weight or you’ll be admitted to hospital. Fingers crossed you can do it.

PS. The NG tube doesn’t elicit a gag reflex at all. 

Hi Sara

That sounds like such an awful experience. I would definitely go with the N.G. tube though as you will find eating really painful otherwise.

I did not have a RIG or NG tube but that was because my radiotherapy was aimed at my jaw and not at the back of my throat  so my swallow was O.K. and they thought I could manage without. I wish I did have an NG tube though as I had so many ulcers in my mouth that were so painful and made eating really hard. I ended up losing 10k.g. I was given some mouth deadening mouth wash that helped a little although not nearly enough. It was a hard experience as I would dread trying to eat something or take the pain killers.

Definitely consider the NG tube.

Lyn

Hello Sarah

I really feel for you.  What you have been through is truly awful. How anyone can even think of putting a RIG in without sedation is beyond my comprehension.  I was knocked out completely, and my RIG was inserted well in advance of treatment starting which is something else I am really grateful that my Trust does.  

t don’t know the answer to your question.  All I do know is that I could not have got through treatment without the tube.  It was, I  believe, literally a life saver.  I was ok for just over 2 weeks but gave up trying to eat after that and used the tube for food and hydration…and continued to do so for some time after treatment finished.  As it was, and using the tube,  I lost over 10 kg during the process and am still struggling to regain weight some 7 months downstream.

Not an easy decision for you in the light of your experience.  I hope you and your team find a solution which works for you.  

Best wishes 

Liz

Hi there.  I did not have any feeding tube.  I managed by eating weetabix and double cream mainly.  And chicken stock.  I didn’t loose any weight. All the best. Lizzie x

HI Sarah

Like Lizzie I made it through chemoradiation still eating.  I think they were amazed I did. Unlike Lizzie I had to admit defeat after the last session.

I was OK up to the last week with only a gradual deterioration in feeding.  Then I hit a wall.  The last week was so tough with the side effects building massively.  Eating went downhill big time during that week.  After my last treatment I did ring the dietitians and got some pump food sorted as there was just no way guts and determination was going to see me with enough calories and nutrients to start the healing process.  I was off the pump around 4 weeks later.

I know you have had a horrid time with the RIG saga.  As others have said there may well come a time when you need an NG tube just to get you a point where you can heal enough to take charge once again.  Calories and nutrients are doubly vital to us as we go through treatment and recovery.

Hi Sarah,

After the trauma of the attempted RIG fitting I totally appreciate that you don’t want to contemplate a feeding tube but sadly for most of us they become our lifeline.

Most of us don’t want them and want to try cope without one but the majority of people have either PEG/PIGG /RIG or NG tube fitted at some point.

As the others have said when swallowing becomes too painful the feeding tube becomes a blessing as feed fluids and medication can be passed through it into your stomach.

For most people they are a short term fix but an essential one ( for some of us we need them longer term or learn to live with them).

Speak to your team asap about the options that are available to you .

Debbie

Hi Sarah. After my head and neck dissection I had six weeks before RT..I'm a really healthy person who never eats biscuits cakes etc but on the advice of the dietician and my friend who's a GP I doubled if not tripped my calorie intake . I ate everything well I couldn't eat after the op so I liquidised everything it was horrible but I was determined I wasn't going into hospital for the feeding tube. I dipped biscuits into tea, added double cream to soups, ste ice-cream and dipped Cadbury buttons into tea and ate them by the bag. Everything I would never do before. I went from 52 kg to 55 kg and maintained it throughout my six weeks of RT. My dietician and oncologist couldn't get over it as they expected me to drop weight and dietician said I was her first to gain weight ever. It wasn't easy but I was determined to stay out of hospital. It's hard but worth it. Good luck x

Hi,skft I did manage to eat the whole time,I didn’t have any surgery.I am very healthy even when I had Cancer I didn’t smoke or drink my diet was very good,lots of fruits and vegetables and I exercised.I wasn’t on any meds and I was 59 at the time.With that said I chewed and swallowed the whole time.It burned to eat and it took a couple hour to eat and sometimes 3 classes of water.No spices of any kind no salt nothing just plain food.Scrambled eggs went down the best,I just added milk no butter and no spices.Meats filet mignon, pork tenderloin soft meats small pieces I found bow tie noodles with a small piece of meat worked best a sip of water for the burn.Rice would get stuck on the inside corner of my mouth I stopped with that.Swai fish worked well,Solomon seemed to burn the most.I ate frozen vegetables(steamed).Yes it wasn’t fun at all but I made it through, BUT I also popped whatever sores formed in my mouth while I ate and they seemed to form as I ate.Once I popped them I just had the pain from the burning when I swallowed.It was not easy to pop them especially the ones on the sides of the tongue because how soft of tissue it is.Had to use a water pick sometimes and it very much made my eyes water until it popped.I rinsed all day long with salt and baking soda.I have a high tolerance for pain,I stopped treatment on November 27 2023 and was off of all meds by February 20 2024 I don’t even take a aspirin,but before Cancer I didn’t take a aspirin or cold medicine for 12 years.I hope this helps you if you have any questions I think you can message me.

Amazing! I've never heard of anybody getting through RT without analgesia let alone being able to eat meat. Mind you,  my oncologist is fond of telling the tale of one of his patients, on finishing six weeks of PRT, going out for a Big Mac ....so there are miracles out there.