"OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Oh noodlehouser, you poor bugger! It doesn't help when the team give you all sorts of helpful advice such as "try harder".
Alex had the same issue and being told to try harder was not useful (and was actually counterproductive)as he was trying as hard as he could and his fear of vomiting after struggling to eat was so high he started retching before he had even swallowed anything. Smells put him off as well as everything tasting bad.
If you think it is partly the mucous giving you a hard time maybe you could swish and spit?? If you are not swallowing it, it might help with the nausea? We were advised to use a water pik (thankyou Pandora). I had never heard of it and had to google it but essentially it is a dental device that flushes water through your mouth. The idea is to set it on whatever pressure you can stand fill the reservoir with tepid water (cold hurt Alex) and lean over the sink and flush the gunk out of the back of your throat. We were also warned that what came out wasn't pretty so keep your eyes closed.
Others have described swishing with slightly fizzy soda and carrying a disposable cup to spit into.
Alex found that whatever he tried to "eat" (via PEG) caused most problems first thing in the morning and we thought maybe his stomach had sort of "stagnated" overnight so that the first thing that hit his stomach in the morning, churned everything up causing nausea and vomiting. Not sure if this was what was actually happening, but on the strength of the concept, we asked for Metoclopramide hydrochloride (Maxalon in Australia) which is an anti-nausea drug and works by getting the peristalsis going. Alex would take the pill whilst still in bed (lying flat helped his nausea), wait half an hour and then have a small cup of coffee. If that stayed down he would try small sips of his Ensure Plus "goop". Everything had to be done slowly, often watered down and in very small doses. The nausea often improved through the day and Alex's best chance of keeping his "goop" down was in the evenings.
I do not know if any of this stuff will help you, as this was one of Alex's biggest challenges too - but just some ideas...
Don't let anyone make you feel like a failure. What you are experiencing is common and not something you can overcome with willpower.
As Christine says, being well nourished and hydrated will make you feel better but actually doing it is easier said than done sometimes. It's a vicious cycle: if you can't eat you will feel worse and if you feel worse you can't eat.
One last thing - Alex's bloods came back with anemia towards the end of his treatment due to the cisplatin so they ditched the last dose and gave him blood instead. Boy did that make a difference to his mood and fatigue levels. I thought they had swapped boyfriends on me !!! Just a thought - maybe there is something going on that is making you feel REALLY miserable (as opposed to standard chemoradiation is brutal miserable)and making it difficult to deal with all the crap you are going through
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
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