Karen, I , sometimes you might just have to go take time for yourself. I have been alone for just about the whole time I have had this OC and survive very well. The big worry was being alone but that i a
managed too. Just tell him you need alone time and take it. Tell him you need a life before it makes you old and worn out. Jim

I don't claim to really understand the whole HPV thing. Apparently he probably had HPV at some point in his life, but his body was able to defeat that virus, since neither of us have this disease. It left behind a protein marker called p16 as evidence that the disease was once there. I tried to find something online about this, but it is so technical that I can't really understand what to copy and past. According to Kevin's oncologist, the upshot is that if you have the p16 marker, your survival odds improve. Hey any hope is good for me right now!

Karen,

P16 is a marker that is expressed when the proteins of HPV expression have been expressed. So it indicates a tumor that is likely a result of HPV infection. It is puzzling that the lab did not also detect HPV. But then again no test is perfect. It may be that on that day, with the laboratory test used, HPV was not detected but indeed was really there.

If it is important to him or you I would get retested or at a minimum have someone familiar with HPV explain this HPV neg/P16 pos.

Day 16 after treatment has ended.

My job as caretaker is hard. It is the hardest job I have ever had. Before treatment ended, it seemed so much easier. I had tasks to accomplish: meds to be given at certain times every day (and this changed from the start of the week to the end of the week.) I had food and water to give him regularly, exercises to remind him to do, and chauffeuring to get him to appointments. I took detailed notes at doctor's appointments and followed them to the letter as best as I could. And my patient was fairy cooperative and pleasant.

Not any more. He is frustrated with me when I suggest that he have a bath by the middle of the afternoon each day. Fussy when I get him up and out of the house to walk the dog, exercise in the gym, or go with me for a quick trip to the store. And today he is mad with me because I want him to eat a bite of something, anything.

So it is quiet around here. It hurts him to talk. And it hurts me to hear him mad with me. I am trying to use humor as a way to jolly him into doing the things the doctors tell me he needs to do to get better. But my humor is falling totally flat. And I am feeling like I don't know what to do anymore to help him. He must have some internal motivation to help himself here too. And as far as I can see, that is not happening.

We are only half way through the month, and we were told that it would be the hardest part of the journey. So I am unrealistic in thinking that there should be some improvement yet. But hope springs eternal in a kindergarten teacher.

I am fearful that windows of opportunity are slipping past quickly. His throat is tightening up. I imagine that his jaw will tighten next. If he isn't swallowing something of substance, I worry that his ability to swallow in the future will diminish. But because it tastes so bad, he is unwilling to cooperate.

Unwilling to cooperate. There is the phrase of the day. It makes it harder for me to do my caretaking job when I am met with such resistance. I am not giving up, but I am just feeling disheartened. If I only had a fast forward button to bypass these next two weeks and get closer to the time when he will again feel like a human who is somewhat self sufficient and slightly less selfish.

Hi Karen
This is very definitely a tough part of the journey. Somehow our minds think we are through the hard part once treatment is completed and expects to feel continual improvement. It is difficult to realize it is just not happening that quickly and in fact hubby may feel worse than when in treatment. On top of that the care team is not in the picture on a daily basis and you, the caregiver, are the only one pushing him to do what he knows needs to be done but does not feel like doing. Those excercises and swallowing are very important to his progress and will decrease long term side effects of treatment. You can only keep persisting even though he will not be happy about it and it is very hard on you. Come here and vent your frustration to those of us who understand as often as you need to. Hubby is very fortunate to have you by his side and caring enough to push him.

Karen, I found the weeks after treatment to be the hardest. Psychologically and physically my husband was destroyed and it took awhile along with some antidepressants to get him moving again. He took to his bed and slept most of the day.
It is extremely hard being the caregiver and watching them suffer, and boy do they suffer with this cancer. I felt like I was dealing and negotiating with a toddler. It was so frustrating because he was so sick but so stubborn. He became more cooperative as he began to feel better but it took time.

But you need some outlets for yourself. Take a walk every day, visit friends,just make yourself get out of the house for awhile. I taught myself how to knit and knitted many, many scarves (it's still the only thing I can make and not very well)You won't have anything left to give if you don't replenish yourself.
He may just need a little break from all of this. See if you can get him to gargle before he tries to swallow anything. Does he need pain meds before he eats? I f he continues to fight you call the team so they can talk to him. He could also be depressed and rightfully so but might need meds. There's only so much you can do and he's probably too sick to care right now. Give him a day off but tell him he will have to rally if he wants to beat this thing and minimize complications. What;s that saying, you can take a horse to the trough but can't make him drink, is this right ? I suppose it depends on what the drink is.
My thoughts are with you, keep me posted, not sure what else to say that might help

Hi Karen, boy can I relate to what you are saying. I'm a caregiver to Steve and he's about 8 weeks out of treatment now. He was one of the fortunate people who bounced back out of his fog 1 week post treatment and for that I am truly grateful. But we did have the moments you mentioned above. Moments where he fought every suggestion I had for him to do things like have a shower, drink fluids etc. It was my daily "hitting my head against a brick wall". For my own sanity I had to back off and let him go. I needed to realise he was an adult and as much as I wanted him to do things I didn't know how badly he felt. So I would suggest things like showers etc, then tell him he was an adult and it was up to him. In the end he would do what was needed. Hang in there. It's a hard job, the hardest I've ever had. But together you will get there. Each day will get a bit easier. We are heading into our 3rd post tx appointment on wednesday and it does get tough just beforehand. A reminder that we still don't know if it's gone. For me the waiting is the one of the toughest parts, emotionally. Don't forget we are all here and we have all felt like you do at some time. And come here to vent when ever you need to. I did and it really helped. Take care of you too, even when it's hard. Sometimes just 10 mins of sitting in the sun with a coffee can do wonders. Keep us posted on how you both are going and don't ever give up.

Wendy x

Day 24 after my husband's chemo/radiation treatment has ended.

It seems to me that Kevin is remarkably worse when I am around on the weekends. He thinks that might be because he talks more when I am around, and talking makes this throat hurt which makes him throw up. Twice now today.

The morning started positively when our friend came by to take him out for a walk. At his insistence I joined them, and we walked about 45 minutes. He felt good and had energy while she was with us, but none after we returned home. He can't muster energy when I am alone with him.

If I leave him alone he sleeps and doesn't eat (and by that I mean cans of nutrition through the peg tube). If I am home he throws up, even though I am not feeding him any sooner than every 3-4 hours, and the amount he will allow me to give him is less than it was during treatment. Seems like a rock and a hard place.

I know this month after treatment is supposed to be hard, but I am falling into a hole here. It is hard to smile and be the cheer leader. We have started fighting, and he says he only wants me around to feed him, wash his clothes, and make sure he takes his pills. The rest he can take care of himself. That said, my formerly fastidious husband hardly ever bathes, he sleeps sometimes 11 hours without leaving the couch, and he is resentful when I remind him to do his oral care.

His psychiatrist has not been very helpful. Since he is sleeping so much, clearly his antidepressant is too strong, and she actually said that since a quarter of a pill was too strong, perhaps I should put it pill in a baggie, crush it, and sprinkle tiny bits of powder in his food to help him feel better. I am not a doctor, but I would think a new Rx would be in order. I have asked for help from her several times now this past month, and I feel put on the shelf every time. We have an actual appointment next Thursday, so hopefully she will change his meds.

When he is up and out of the house, he looks great. Everyone says so. He doesn't look depressed, and he looks like he has returning energy. But at home, this is not the man I see.

I just want to cry.

I called his radiation oncologist yesterday, and he said that this was really in the realm of the psychiatrist. He has been my steady support through all of this, and now I feel shelved by him too. And alone. Not sure what to do, because whatever I am doing now is certainly not working.

It is not like he has been given bad news. Death is not knocking on his door. But he is afraid the cancer has traveled, so I guess he has put his life on hold until he is told otherwise when he has his pet/ct scan after Thanksgiving.

He is afraid to eat because it will taste bad. He is afraid to have cans through the peg because he might throw up. He doesn't want to do any of the hobbies he formerly enjoyed. The RadOnc said I need to make a plan for Kevin that we will discuss at our appointment on Thursday to get him up and around and out of the house, but I am at a loss of what to put on this plan. Nothing that I suggest will he agree to do. He is a stubborn man.

It is so hard to put so much focus and energy into helping the man I so desperately love to feel better, and in return I am left feeling injured and resented.

I really am not bossy in my requests. I say things like "sweetie, have you swished and spit lately? You might cough less if you did that." I have bitten my tongue as much as I can when he says hurtful things, and I am sure he doesn't mean to injure me when he snaps.

Karen- I can only offer advice on how to help yourself. My husband was a wonderful patient and although he was stubborn also I didn't have the problem of depression to deal with. as Wendy said-sometimes you have to realize that the ball is in his court and he is an adult. That being said- you MUST take time to recharge yourself. If he is being difficult-take a walk by yourself. I did this alot. I could get my husband to go once in awhile but I would most often go alone. Try to spend time with friends outside of the house. I had my teenagers home to sit with Neil so I could leave if only for a few hours. Very often I would have my friends or family over so I could have social interaction but still be home. I also discovered pedicures. I'm not a high maintenence person but sometimes it can work wonders for your mood especially if the one you love is less than nice to you. Hang in there-you are trying your best in the worst of situations and that is so very hard!

Absent some undisclosed medical condition it sounds like he's a tad spoiled and looking for some additional mileage out of the sympathy path from you and you need to either put a wig on and become a new female in his life like the female walking friend or develop some tough love.

Oh and I would get a new psychiatrist or ditch that plan altogether.