Eating Issues

Hi Samantha

I had both sides treated but a reduced dose on one side. Everything came crashing down at the beginning of week 4 and I had an NG tube placed. I couldn’t have done without it. 
The fact that you’re getting only one sided treatment won’t make much difference to the dose your throat gets so you will still get pretty sore. 
Whether you have a PEG or RIG is entirely your choice but if you decide not then make sure you can have an NG pronto. It’s no fun not being able to take your analgesia. 
My trust had a policy of reactive NG so I got mine immediately I was in trouble. 
Best wishes 

It's weird because he was actively discouraging me to have a feeding tube and even the Nurse seemed to agree and was saying I can always have supplements and nose tube if really needed. Did you have anti inflammatory medication during your treatment and  were you on immunosuppressive meds? I trust my team but it seems odd.

No I wasn’t. But if they have told you that there is immediate access to NG then, to me that sounds fair 

Who knows, you might even manage without one at all. Some people do. 

Yeah, they've said I'll be having regular meetings with them and the dietician will also be there and they will be ready to organise aids and NG. Having read everyone's experiences of throat/eating I'm trying to wrap my head around why the Doc would say he thinks it won't be so bad. He has also refused to treat the right side at all unless we come to that bridge in time to come. He obviously knows what he's taking about but you can't help but think 'yeah but he's not actually been there whereas fellow patients have'. Did you have a glossectomy? Sorry for all the questions!

Tobi Le Great said:

Did you have a glossectomy

No I didn’t but I know somebody who did. Panch 

I can’t remember whether she had a stomach tube. I’ll see if she can help 

Thank you 

Hi there.

I had a hemiglossectomy & 1/2 neck dissection in October 2020.

I had been on immunosuppressants for Psoriatic Arthritis, but paused them myself as soon as I realised that something was seriously amiss.Inonly restarted about a year later.

Radiotherapy is less than pleasant and as it was deep COVID, I was also told that if I needed an ng tube (over Christmas) I would need to be admitted - tho every department/hospital/trust has a different protocol!

Some are certainly given a stomach tube as a matter of course; I am yet to fathom exactly WHY.

It IS certainly doable without. It is usually encouraged so that you maintain your swallowing reflex - which can be lost depending on what you’ve had done and how you react.

You will be fed up of hearing it, but “everybody’s different”.

I won’t pretend it’s easy, but I ate out at a (posh) restaurant 6 months later.

Happy to answer all and any questions.

PM me if you like x

Thank you so so very much for this Panch. I have various connective tissue disorders and have been on prednisolone and azathioprine amongst other things for 34 years. Sadly the azathioprine has caused my cancer so I'm on Hydroxychloroquine and cannot stop even during treatment. I already have Oesophagitis and take meds for that too. I've had a partial glossectomy and neck dissection and I know this sounds odd but how would you compare the pain of eating after the glossectomy to the pain of radiotherapy eating.  It took me an hour to eat one weetabix and I'd be practically crying with frustration but I was determined and forced myself to eat solids the next day after the glossectomy just so they'd discharge me. It's so I have a vague idea of what to be prepared to push myself for as I've got to swallow somehow to get my meds down. Plus I live alone with no family to help so I really need to be ready for this. 

Choosing an appropriate immunosuppressant is my current problem. My rheumatology team is not keen for me to return to my prior med, yet I’ve “failed” three alternatives in the past couple of years.

Radio pain is entirely different from post surgical pain. I lost half my tongue and had a reconstruction so wasn’t even allowed to attempt swallowing for about 10 days.

Post surgery, you heal in a linear way.

Radiotherapy burns from the inside and for me, I needed a good couple of months on morphine and a range of other mouth rinses, gels etc.

I think that there were only a few days that I could *only* manage the supplements, but I’d suggest that a nutribullet or other blender would be your friend.

The fatigue can also be unreal, so you may need support for the last few weeks of travelling, depending on how far you have to travel. I’d get stuff in the freezer; the blander, the better (sorry).

I have written out a list f hints and tips if you want to message me.