Tube Feed Pipe Feeling Anxious

Hi Blacksheep110750, welcome to the group from me. I had a RIG fitted before my treatment, having it fitted isn't painful, it can be a little painful for a few days after, which you can take painkillers for. It really is worth having one if offered, no one can say if you will need it or not. I was really pleased I had mine as I was 100% reliant on it 3 weeks into my treatment, and for several weeks after treatment had ended. 

Ray.

Hi Blacksheep11050

 My trust didn’t routinely fit feeding tubes but I had to agree to a ng tube being fitted if I needed ine By the end of week 3 I needed one It’s hard to explain I went from eating perfectly fine one day to the next being unable to eat sufficient or drink or take my medications. The ng tube allowed me to do all of those and it helped me mange a good recovery. I had it in for a total of 6 weeks it was my lifesaver. Treat it as part of the treatment there’s nothing to fear. Many if us in here have had help some manage without feeding tubes but I know I couldn’t have. My blog below might help 

I too  had  similar spread as you right tonsil soft palate and 7 lymph nodes   

Hazel 

Blacksheep110750 said:

My treatment is only one side of my face , would I get away without it .

Hi black sheep. You are getting a longer dose of RT than the standard 6 weeks. Listen to Hazel and read her blog. You’ll see what 7 weeks of CRT does. I don’t want to alarm you but you should be prepared. The treatment works but it’s tough. If you’re offered a tube take it. 

Hi and welcome from me.  I had a PEG (a RIG is similar).  The insertion process was under sedation and lasted about 2 hours allowing for check in and recovery time from the sedation before I was allowed home.  I had absolutely no problems with my tube and it was not painful.  I even went shopping on my way home from having it inserted! 

Providing you look after it then it should not cause a problem, but will save many problems downstream if you are unable to feed, hydrate or medicate as many of us find ourselves by midway through treatment.  I had mine removed after I had a clear post treatment scan - so around 14 weeks post treatment.  That too was an easy process. From about week 3 I used it extensively for hydration and medication.  On the last day of treatment I went onto pump feeding for around 2 months before I was able to gradually move back to oral feeding.

The end result was, I believe, a better recovery for me and a tiny dimple just below my breast bone (that may vary depending on where they find your stomach!!).

I would strongly advise anyone who is going through this treatment to have a tube inserted ready for action.

It's not so much about the pain itself, but rather the thoughts and the process involved. I find myself not being adept in such situations and can easily pass out. Based on the responses, it appears that the best option may be to have something to assist. I have read your journey guide, which gives me an idea of what I am facing. I am currently working through an action plan, considering options for pain relief, dry mouth management, moisturiser creams, and other measures. 

Blacksheep110750 said:

considering options for pain relief, dry mouth management, moisturiser creams, and other measures. 

You should get everything you need from the team looking after you. Just make sure both chemo and radiology know how you feel every day.

There is a really good thread here on how to prepare started by one of our members 

HERE and Peter has written a really good piece at the beginning of THIS THREAD

Hello blacksheep, as a fellow wife I can only tell you about my husbands journey. He got diagnosed with T4N3M0 on top of the throat about a year ago now,he's nearly 11mths post his treatment.( 6wks RT and 2 rounds CT, Cisplatin ) About a week or so before his treatment started he had a PEG fitted, as we got told that he will more then likely not able to to swallow anything at some point. The procedure didn't take long,done with a local anesthetic, a small incision, the PEG tube pushed through the stomach wall. Home pretty much straight after.He didn't have any problems with it, just a little uncomfortable and a little sore and took some time getting used to it. He got told how to look after it and how to put food etc through.He had to have it for about five months after finishing treatment,he lost a lot of weight, through this time he had to have it changed twice. For him it was a life saver,as so many have said. Hope this helps and hold on to knowing this disease response well to treatment. All the best. Fellow wife Mel.

Hi Blacksheep and welcome to the community.

Sorry to hear you have had this diagnosis, but do stay positive as this is a treatable form of cancer, although the road ahead will be tough.

I too had 6 weeks of chemo and RT for tonsil cancer, spread to lymph nodes ( just one side) earlier this year and I would strongly advise, like others already, to have a PEG fitted.

It really will be the main way for you to get fluids ( including pain relief meds) and calories in, following any surgery and the CRT treatment process.

Eating and drinking orally will probably be too difficult and too painful following surgery and in the later stages of CRT treatment and for weeks after, so it is really in your best interest to have this method of getting goodness and meds into your body.

Having it fitted under sedation is relatively painless and as long as you maintain the tube with regular flushes, and keep the entry wound site clean and sterile ( the nurses will give you full instructions and info on how to do this), you will come to depend on it until you can finally swallow again.

Good luck moving forward and do come back for help and advice whenever you feel ths need, as contributors to this forum have years and years of shared experience for you to call upon.

MickyC

Hello, thank you for your response. Could you please share how your recovery process has been month by month since the treatment? How are you doing now? Thank you. 

Hi Blacksheep.

Folowing surgery in Nov and Dec 24, to remove tonsils, neck lymph nodes and have my healthy wisdom teeth out,  my CRT started just before Xmas and finished 31st Jan 2025.

Following surgery in Nov I wasn't able to eat solids for about 3 weeks. I could mange custard, shakes soups etc, but nothing solid. After 3-4 weeks I was eating again and was able to manage a small Xmas dinner by the time that came around. I had the PEG in but used it sparingly as they advise you to keep your troat muscles working as much as possible 

So to be honest, get through that relatively quickly then CRT commences. For the first 3-4 weeks you feel like it is going to be easy, as the side effects haven't kicked in yet and I was able to drive myself to hosp (45 min drive) for the first 5 weeks, and probably could have done week 6 but we decided I was feeling pretty rough by now, so my wife drove me the final week.

Then the hard part starts. The side effects of the CRT finally kick in hard, and here I'll just talk about eating and drinking, because that's the main issue with our treatment.

Feb 25 and I did not eat a thing (too painful and too difficult). I took 6 x Fortisips a day through my PEG, giving me 2400 calories a day, which the nutritionist recommended for me.

I also administered my Oromorph (liquid morphine) and soluable paracetamol this way throughout Feb.

Early March I started to be able to eat soups, porrige,  omelettes and scrambled eggs, although be aware you may not be able to taste them and it will be a chore to eat them, but you must persevere.

Late march I was eating pasta, fish pie and most "wet" foods, but always supplementing this with my Fortisips which I could now drink, to keep my calorie intake up. And my sence of taste had begun to return, which was the best feeling ever!

And then i was able to return to part time work on 4th April, and because I was doing well I had the PEG removed in early May.

Eating continued to be difficult (and you may find yourself not enjoying eating with company for a while) as swallowing has changed and our salivary glands no longer produce the same as pre treatment, but taking drinks with meals eases that.

Progress then slows and you start to embrace your "new normal" and get back to trying and enjoying different foods again.

Today I can eat and enjoy most foods, but do need a drink to hand for drier foods.

Hope this helps and please do stay in touch on these forums, throughout for more specific advice as your treatment starts.

MickyC