My husband (Stage 4b with primary in tonsil) completed 15 weeks of treatment just over 3 weeks ago (induction chemo with three types of chemo followed by chemo/radiation). He did reasonably well until the last few weeks of treatment but developed severe mucositis and the mucous is still coming. Another problem was that his fentanyl patch was doubled over the course of a couple of days and he had a terrible reaction- hallucinations, confusion, etc. and was hospitalized (he is now down to 12mg patch). For about the past 6 weeks he had so little affect and could not interact much with me so it was such a loss and so scary. It is finally better this past wekk but now he is very frustrated with what he sees as his lack of progress, has lots of mucous still, can't eat much of anything that's not liquidy, and wants the thermostat set on 78 most of the time because he's cold. He doesn't seem to always realize that his mouth is full of mucous and then seems to get an almost unmanageable urge to just spit it out (hence at times spitting everywhere but in a his plastic spit dish or via his suction machine). He really wants me to assist with, or do, his tube feedings and I do crush up his meds and inject them in his peg tube. I am working full-time (much of it from home) but am really getting exhausted and overwhelmed- in large part because I have really been almost exclusively involved in his caretaking (most days driving over an hour each day for treatment and appointments) for 5 months. Friends have been great about bringing food and offering to drive some but his mucous, bad reaction to the fentanyl etc. were pretty much beyond what friends could manage these past 6-7 weeks.

We both need some reassurance that this awful mucositis should get better fast. I'm concerned that he is just basically spitting out almost anything that goes in his mouth because it hurts and he feels as if there's an obstacle at the back of his throat and wonder how others have gotten past this? Also, did others experience the turning up the thermostat issue and how did you cope with it? I have tried having him wear a hat, thick socks, etc but I'm practically ill from the stuffy heat. I have so much admiration for the caregivers on this board. It is so darned hard because you have to be so available, so on top of everything, and convey hopefulness and patience. I've done well but sometimes I'm concerned that I can't hold up much longer.

Sophie H.