Eight weeks post treatment. No improvement in eating to report. We had our follow up with the surgeon to make a plan for a decision about neck dissection. I am very concerned that my husband is losing a little under a pound a week. He simply will not PEG an adequate number of calories. He's also more active. As he says...it is simple math. At this point I can't even focus on the not eating by mouth because I am so frustrated that he won't PEG enough calories. He knows exactly how many VHC Boosts he needs to PEG. He knows the impact of poor nutrition and says he is doing the best he can. I just don't get it. I totally understand why he may be unable to take in significant calories by mouth. I totally understood when he said he could not PEG enough during treatment for various reasons. This, I do not get. He has returned to work. We've had countless discussions about setting a reminder on his phone to eat. He has discussed getting a different kind of feeding tube instead of talking about how to make progress toward getting it out. Before he had the tube put in he could only talk about getting it out. To me if he can't/won't put adequate calories in this tube, why get a new tube? There is nothing wrong with the functioning of his tube, he just does not like the size/appearance of the one he has. I am not the one with the disease so I totally confess I do not understand this turn of events. Never, ever, ever dreamed this is what would be occupying my mind at this stage of recovery. I can hardly watch this go on and wonder if the weight loss will stop or not.

At this point I feel like he has got to decide to take charge of his nutrition. He is not too sick or in any other way too impaired to do it. When the medical team or I talk to him he always says he will do better but he doesn't, just continues to say he is doing the best he can. As a caregiver, I can just say it does not look like his best. I am frustrated. I feel like we are going backwards. They told us at their center at the end of a year 95% of their patients are no longer tube dependent. I hope that is true for him but today I am feeling concerned. The HNC PA just flat out said that he needs to be in charge of his nutrition and at this point if he is not taking in adequate calories that is on him. I confess that to have endured what he has and then not do what seems to me to be one of the few things he could control I just don't get. He is facing a possible surgery in 5 weeks. We have discussed the importance of good nutrition if that happens. Still just does not take in enough calories and gets angry if if try to manage his intake. Trust me, I do not want to be thinking about or discussing what he is eating/not eating at the point. Sorry, I do not have a cheerier report but in case someone else got through this I am just trying to be honest. If it makes no difference if he continues to lose weight, I wish someone would tell me. He has lost about 13% of his weight.