Recently diagnosed and about to start the journey

Hi jazz and welcome to our little community 

I had 6 weeks of radiotherapy but wasn’t offered a peg. Hospital policy was to place a reactive Nasogastric tube. I had that from the end of week three for 8 weeks. It was a life saver.

It enabled me to maintain my weight so that my body could heal, take my pain meds and remove the need to swallow anything while it was excruciatingly painful. It also allowed me to play with different foods when I could without having to worry about getting enough calories down by mouth  

It came out as soon as it’s job was done. I’m glad I didn’t have a PEG and have to wait fir a clinician to take it out. This is a personal opinion though 

Some people fight like mad and manage without tube feeding. I couldn’t 

Hope this helps 

Thanks Dani.  That's really helpful.  I will have the nasal tube if i don't go for the peg feed. Not having to spend 3 days in hospital having the peg fitted and then having to have it removed does appeal. 

Morning Jazz. I see group Guru Dani has already replied with her experience and wisdom, but I am going to add two pennyworth of my own. Like you I had HPV pos tonsil primary with several neck nodes. My plan was like yours, surgery, then chemo and DXT for 6-7 weeks afterwards. I think the critical point to always remember is that swallowing is NOT a reflex action, its a learned behaviour. That might seem facile and counter-intuitive, and it was a shock for me too, but the critical thing is that whatever you decide on the route of your nutritional support, you MUST NOT lose the ability to swallow! If you go back through the collected diaries on the HNC forum, you will soon note that the folks who really struggle post treatment, (and often for many many months afterwards) are those who have stopped managing oral fluids because of pain usually, so that is the really important starting point for your decision. (Note distinction between feeds and fluids).

I ended up with a PEG, insertion of which was one of the few disasters that befell me but thats another story and not typical. The use of a pump and a regular routine with enteral feeds sustained me, and even though it was about 4 months post treatment before my tube came out as my weight finally began to increase, and it does require a degree of self care and support from the stoma company etc, for me it was worth while, and I felt on reflection less intrusive than having an NG tube in place. The clinicians will advise and your cancer type will influence that decision, but it was a life saver for me. 

2 penn'worth delivered, good luck! Phil

Jazz, for info, my PEG was an overnight only because I had an unexpected complication and removal was about 10 seconds in outpatients, so its not usually a big deal! It hurts though, if you have such magnificent abs as mine, (I jest)!

This thing about the swallow function is a strange one isn’t it. I didn’t swallow any food for weeks but I was absolutely anal about doing my exercises, swallow and jaw.  
To be told that you have to fight to swallow something all the way through treatment despite the pain otherwise you’ll lose the ability is frightening, wrong and I’m lucky that I never was. I did try but in the end I got really scared of “food” so pump fed happily through the night. 

Hi JazzB

I had a PEG fitted about 4 weeks into my treatment. I was a bit unusual in that I had very little pain so swallowing wasn’t an issue really, but I completely lost my appetite after my first chemo. I didn’t want a tube so I spent a week determinedly trying to put on weight-and managed to put on 1gram. At which point I gave up. I did spend a weekend in hospital after it was fitted and developed a gastric burn under the plate which took a bit of sorting but it was a lifesaver. It was removed just after my 12 week post treatment follow up at day surgery. The benefit for me was that it enabled me to have my basic calories whilst building up my “normal “ eating without pressure. It was also less obvious than a nasal tube, not that I was partying much! The trouble is that none of us know how the treatment will affect us but in my case I lost a lot of weight very quickly so I felt it was my only option. Good luck with your treatment 

Thank you.  A lot to think about 

Hi JazzB welcome to our small community. I too had tonsil cancer with several affected lymph nodes with spread to soft palate and anterior wall my cancer centre didn’t routinely offer p e  g but I had to consent t mo s n g tube if need be. The first 2 weeks I was fine week  3 was harder by week 4 I was knocking on dieticians door  begging for n g tube I had it in for 3 week either side   Then I was orally drinking endure s 6 a day and trying bits of food. I never lost ability to swallow afterwards I like Dani was meticulous with swallow and jaw exercises. My mouth opens  just as wide as before and I’ve no swallow issues. 
the n g tube was a life saver fir me I didn’t feed at night I fed through the day my pump was in a rucksack thst I could take out if needed. 
mad for removal I took it out myself with Macmillan nurse watching. 
hope this helps 

Hazel x

Thank you Hazel.  It does help

Dani, it was constantly drummed into me by both my superintendent radiotherapist, (who was actually the most helpful clinician I met through my treatment cycle), and my Macmillan nurse, that maintaining the swallow mechanism would have more impact on my recovery time than anything else. It also struck me that in the HNC group here (at that time), we had a number of individuals who still had enteral feeding, either PEG or NG, many months after finishing. They were really struggling with the battle with their physios etc to “re learn” how to swallow, so I admit,it did become one of my obsessional behaviours, along with as you mention the oral hygiene discipline. At that stage, you’re pretty fixed on what is happening to your battered body, so any little trick to improve matters seems very worthwhile?