Hi Connie! Im sorry to say but unfortunately it sounds like your husbands lack of adherence to his intake is catching up to him. Paying attention to every single sip and bite can become monotonous and tedious but its whats necessary when going thru such a serious medical condition. None of us wanted to do everything we were told to do. For some who are not used to following directions it must be very difficult and overwhelming. Being the patient going thru OC treatments and recovery is so very difficult!!! Being the caregiver to me sounds even harder, especially when it comes to patients who are a bit challenged when it comes to doing things their told. Your situation Connie is a perfect example of the "everybodys different" phrase thats used so often around here.

For every week of rads, patients need at least one month of recovery which is how my doc explained it to me. The recovery phase is rough!!!! Its full of ups and downs and a few setbacks thrown in when least expected. A patient that does not adhere to their required intake amounts every single day quickly finds themselves in a vicious cycle of feeling absolutely horrible, they're fatigued and spend considerable amounts of time sleeping. The problem is they arent taking in enough calories to sustain their normal bodily functions then throw on top of everything their body is trying to rebuild itself without the right equipment (calories and fluids). By limiting his intake so dramatically he is not only obviously losing weight, hes losing muscle right along with it. Patients who dont focus enough on their intake can find themselves with other serious medical issues such as cachexia, kidney damage, malnutrition, dehydration as well as depression and digestion issues. Plus the longer those swallowing muscles go unused the harder it is to regain being able to swallow properly without aspirating which can lead to aspiration pneumonia. My personal feeling is feeding tube SUCK!!! But they are a necessity to obtain enough nutrition on a daily basis. Without using it when not able to swallow is like he is starving himself and its being done at the worst possible time. Your husband knows all of this (or at least moist of it), but he is unable to process just how vitally important intake and hydration are. They are a necessity to life and if he wants to improve his current condition hes going to have to make up his mind to do things he doesnt like doing including listening to his medical team (and of course you). At some point all patients must face the fact that they themselves are in charge of their choices and its up to them to do whats necessary to survive. As an excessively stubborn patients caregiver, I imagine you must have an abundance of extra stress and the weight of the world on your shoulders watching your husbands continued resistance to everything thats mandatory. Ive noticed over the years, patients who are very independant have the hardest time "letting go" and allowing themselves to be the patient needing to be taken care of. I can understand stubborn patients as I wasnt the best patient needing to depend on my teenaged children to care for me. This which wasnt something they knew how to do as I was always the one in charge who took care of everything in the household by myself. We all had a hard time of it! Maybe your husband isnt able to see the entire picture and how this affect everyone close to him? It could be a million and one smaller issues that have led up to this moment. As some point all patients are forced to face their own mortality which is one of the hardest things when going thru cancer. Its been compared to the stages of grief. Until the patient opens up to think thru it they will not improve or change their habits. PTSD has also been a side effect of living thru cancer.

Im sorry I got so far off track!!! Basically its up to your husband to wake up and stand on his own 2 feet knowing he is responsible for doing whats necessary to get thru the recovery phase. Unfortunately the stubbornest patients are the ones who suffer the most. At 5 week post rads some patients are beginning to go back to their regular lives by slowly returning to their old routines. I returned to work part time 6 weeks post rads. Was I well again.... NO!!! Just driving back and forth to work 45 minutes each way was just about all I could manage a day at that point but after a few weeks I began to take on more and more of my former job. Im certain your husband would love to regain his former routines so when he wakes up and starts doing better with his intake he can then feel well enough to return to work, maybe starting on a part time basis for the first few weeks. Many patients 5 weeks post rads are also feeling very frustrated by their lack of significant progress. A complete recovery from what they've gone thru takes an entire 2 years until they have their sense of taste and saliva back 100% or at least as much as they will get of it. Even around the 2 year post rads mark some patients have reported more smaller improvements with their saliva production and sense of taste. Its not easy eating when everything tastes so bad and your mouth is so dry your tongue sticks to the roof of your mouth. Like everything.... it just takes time (and of course calories/fluids). The more your husband helps himself to improve his intake the quicker he'll feel better and be back into his old routines. Its optional, completely up to him. Until he fully understands the big picture that his recovery and adherence to intake requirements are what he must do then he wont improve, he'll get even worse and end up hospitalized again.

Im sorry Connie!!! ((((HUGS))))