Oct 17, 2009 - 11:45 am
My husband is 10 days past chemo and radiation treatment for stage 4a base of tongue squamous cell carcinoma. They tell us that we have had it easy symptom-wise, although it has felt very rough going through it all.
I can't believe I didn't find this board till after he had finished treatment. I could have sure used a place to gather input earlier. But here I am today.
He was really tired before treatment ended, but his exhaustion has gotten so much worse now that it is hard for him to stay awake for an hour. He dozes even while in the middle of a conversation with me. I would guess 20-30 nappets with some additional long naps a day.
My question for today is how do I support him by allowing him to sleep as much as he wants, while simultaneously motivating him to get up and move around as per the doctor's orders. At our last appointment, the doc said enough laying around in bed. It is time to join the living again, and it will help him to feel better again sooner. Laying in bed all day long zaps your energy. He had an x-ray last week that showed a HUGE gas bubble in his stomach that is the result of too little ambulation.
As expected so soon after treatment he is still in pain--2 pain patches are on him right now, but that makes it pretty tolerable. He isn't swallowing much food yet, but through his PEG tube he is getting 3 liters of water and 5-6 cans of liquid nutrition or the high cal shakes that I concoct each day.
Before treatment ended he was responsive and somewhat conversational and grateful for all I am doing to help him feel better and hold our lives together. Now he barely talks to me, issues orders when he does, and doesn't seem to want me nearby at all. He just wants to sleep.
He has seen a psychiatrist who prescribed an anti-depressant to help him with depressed feelings, but I swear it seems worse now than it has been before.
So I am feeling disliked and excluded from him right now. And I am frustrated by his lack of motivation to help himself move out of this sleepy ditch. He really wants to get past this energy-less feeling and he wants to eat again, but he doesn't have the will forces to do anything to help himself toward those goals. If it is slightly unpleasant, he crawls back in bed.
I know I should be cutting him a break, and I have been a great advocate up to now, but I am not sure what to do next. I don't want to harp on him to wake up and brush his teeth or move away from the tv etc. He doesn't want to hear it either.
I guess I am at the point where I am feeling angry and resentful to the cancer about the life we no longer have, and I can't yet see the life we have yet ahead. This place feels like purgatory. Make no mistake, I love my husband so very much and I am not angry at him, just the place I find myself today. I know it won't last forever--we will find a new normal. I just don't want that to look like my grandfather sitting on the porch enjoying loafing while everything else is done by me for the rest of my life. This was my grandmother's reality. My husband is only 49 and I am 45. We have years of life ahead to live.
I have already contacted his psychiatrist to ask for a different med that makes him less sleepy. And I am in regular contact with his radiation oncologist to keep him updated as to how he is doing.
Someone will tell me to have a good support system. This I have, with so many friends who are positive and concerned and offering help. And someone will tell me to find time to do things for myself, but if I leave for 2 hours, 4 hours, or 8 hours, he sleeps and doesn't eat for that time frame, so right now, that is not a possibility. I work each morning, so he does have time away from me (and vise versa).
I don't know what kind of advice to hope for. I just needed a place to voice my frustration and pain.