Dearest Stacey,

I can totally relate to how you are feeling. When my husband was first diagnosed, I signed on to the forum and urged him to take a look himself; he read a bit of the info but felt it was "too grim" and would not come on again. We had a bit of a discussion and he told me he couldn't understand why I was making a bit deal out of it; he thought he would sail through the treatment and, if he should be in pain, all he would have to do would be to ask for more pain meds. Of course, we all know it's not as simple as that. My husband was a very healthy and strong 65 before his dx, and I guess he was having a lot of difficulty accepting the fact that he might not ever be what he used to be. That, in addition to the fact that the patient has a lot of information thrust at him while he is still digesting the meaning of the diagnosis. I am convinced that most patients may just choose to hear what he wants to hear and ignores the rest, or he may interpret it the way he wants.

Fighting oral cancer requires the patient to be really proactive, something my husband has not yet learned to do. We have had quite a number of tense moments over feeding,hydration, asking the nurses at the hospital for support from time to time -- even over at what time we should leave the house to go to the hospital.

Everyday I remind myself that John probably feels very lonely in the sense that he is the one who is fighting the battle, while I, at my very best, can only be the assistant. It helps me to deal with his moods with patience. I wait for the time of day when he is feeling better and talk to him about whatever I think he might need to do. I also ask the RO questions about long-term side effects in my husband's presence so that he can hear the answers directly from the doctor. (For example, this past Monday I asked about the percentage of patients who become lifelong dependent on the feeding tube.) I would, then, remind him that "you heard what the doctor said."

I cajole, I beg and sometimes I show that I am frustrated with his unwillingness to put in effort. I also hold him and tell him that we are both in this together and that while I am pushing him to do this and that, I am doing it for him and for myself too. It is very hard work, but I do think I am slowly getting through to him.

I would just like to share my feelings with you and I hope it makes you feel less alone in this horrendous fight. BTW, the IV for days when he goes in for RX is a very good idea. It will help him feel a lot better and may even reduce the nausea.