Hi there, I am new to this forum. I have been treated with 30 sessions of radiotherapy, mixed with chemo (2 sessions) for HPV+ related throat and tongue sarcoma. I coped reasonably well with the treatment, it was fairly grim and I was fitted with a PEG which I am still using full time. I am over run with phlegm, which is never ending, albeit my wife assures me is dying down, there seems to be nothing i can do to reduce it all day and night, which is fairly frustrating and debilitating.
I am now trying to wean myself of the PEG, and wanted to start this by firstly swallowing water and then migrating to soups, cut up food etc. The problem is, every time I try and swallow water, I gag and am sick and it is not improving in any way; it’s really painful and feels alien. I want to be rid of the PEG as soon as I can but if I can’t even swallow a capful of water, there seems little hope. Has anyone had a similar experience?
I am trying to work out how to swallow and get that working, so that I can move onto foods. I seem to have dramatically underestimated this stage. My positivity has got me this far but I am wobbling a little now.
Fingers crossed, similar experiences might help me work out what to do…
Im sure you will have a great holiday MWCG with or without a PEG as you might be starting to swallow by then. Good luck and enjoy.
Chris
Its sometimes not easy but its worth it !
I have tried carbocysteine through the peg, only to be told by the very helpful pharmacist, you have to swallow it
And yet it comers in a sugar free oral solution especially formulated for enteral feeding
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi MWCG
I was exactly the same spent months gagging or vomiting on thick sticky mucus tried everything salt water and bicarb mouthwash was ok but in the end my CNS loaned me a suction machine which was amazing sucked it out in seconds and saved me using up to 7 boxes of tissues a day ( at my worst) .
I was unable to sip anything water especially but eventually 2mths post treatment and i managed little by little ( i do 1 litre a day via mouth and 1litre via PIG like a PEG)
Im 6mths post treatment its been a hard slog still have feeding tube but accepted it will be taken out when i can eat more than a trifle 
just been to Cyprus with 16 bags of feed (free to take in extra handluggage )if you call airline and have a letter from CNS or dietician .I enjoyed every minute fed in the morning and in the evening .
Booked another holiday!Ypu will hopefuly be able to make yours too
You will get there but slow and steady keep trying …. it does get better but takes time x
Debbie
Its small very portable brand is medala ( no idea of model sorry)easy to use bit noisy but gets the mucus put in seconds Hope your CSN is as helpful as mine and your hospital loan equipment
Hopefully the mucus will start to thin and go soon for you .
Debbie
