Feeding tube and likely consequences of RT

No problem. It was my Marsden hospital team (Head/Neck nurse, Dietician and speech), I saw them every week during treatment. I was advised at least 2 litres every day and the steam would help break up the build of pleghm rather than cough which they said would do more harm to your throat. I filled a large sports bottle and found I got through half by the time I had arrived for RT which was only a 15 minute drive from home.

Hi Mark,

I was completely freaked out at the suggestion of a PEG initially, but am so grateful I had one.

18 weeks post RT now, had the full 6 sessions of Cisplatin and 30 RT. Steamed at least 3 times a day, hourly when at worst, drank about 3 litres of water a day. Managed to keep eating all the way through treatment and chemo didn't make me sick. This was despite an ulcer  the length of my tongue from week 2. I was really happy I'd managed this. 

PEG was a problem to start, leaked lots and had antibiotics. But when you have to take movicol, soluble paracetamol or cocodamol, all meds are liquid and eat it gets a bit much. They don't taste great so started taking some through PEG from about week 4 to avoid feeling sick. It worked.

Half way through my lunch the day after treatment I could no longer swallow. Couldn't for 4 weeks, so became 100% reliant on PEG for all meds and food. I had maintained weight during treatment but have lost 3 stone since. I have stabilised weight in last 7 weeks, so hope PEG can be removed. 

When I questioned having one fitted, I was told they wouldn't be able to after a couple of weeks so it was now or never. Once you get used to it the PEG tucks away out of sight and is convenient to use. 

I have a pretty good pain threshold. It wasn't pain that disrupted eating, it was the actual ability to swallow. I did my exercises throughout, so nothing else I could have done. 

It is absolutely a personal choice, but I would recommend it. I now feel well, have gone back to work (fully in September) and get my scan results next week. I doubt I would feel this on top of it if I hadn't kept the nutrition going. 

Ronnie 

Hi Ronnie, when you say the day after treatment do you mean the day after you completed it? ie the 6 weeks?

did everyone here get advised to drink plenty and steam, and did you follow the advice

also can anyone recommend a good face steamer, 

thanks all, 

Don't remember ever being advised to steam, though I can see if would help, but certainly drank a lot of water.

Hi

Yes, after the 6 weeks. I'd managed breakfast OK. 

And yes again, I was told to half fill a mug with hot water and steam 3 times a day and to drink lots, especially the day before and on chemo. 

All helps 

Drink as much water as you manage also told about the steam even a steam bath or shower whatever through treatment for start and well after it's finished best advice everyone would agree on this  

Now you mention the bath reminds me that I spent countless hours in it, was really the most comfortable place to be, so maybe the steam helped (when I first got in, I invariably fell asleep and woke up in tepid water a couple of hours later).

Hi mark 

I had to sign a consent form for n g tube if needed snd boy by week 3 end if I needdd d it. It was my life saver I took it out 3 weeks into recovery which is easier to do with a n g tube as opposed to a peg.  The decision is yours but be guided by your team if you struggle to eat the consequences can be hospitalised if you loosr  too much weight. Be guided by your team remember you are hsving treatment on both tonsils. You’ve struggled with pain already with tonsils op it doesn’t get any easier. All

ky medication snd 2 litres of water went via my tube. It can get that bad you can’t swallow tablets 

not wanting to scare you but it’s rare for anyone to get away fully. 
I also had a nebuliser snd a humidifier I bought the humidifier from Amazon the nebuliser came from hospital  do not put any oils in either or in a face steamer if u go that way you can cause more damage to an already sensitive area  

Hazel have 

Hszel 

I was advised to drink lots and managed three  litres of water either by mouth or via NG tube every day. I managed with the head over a bowl of steaming water once a day when the mucous in my throat became really thick and nauseating. Some hospitals recommend a nebuliser which delivers the steam at a bearable temperature. A humidifier at the bedside can be useful too 

Yes. I can do a good sleep in the bath still