I just posted an email to his radiation oncologist to request a food pump. We will hope that comes through. It would certainly be a helpful answer. Thanks for this suggestion!

How do you keep it positive for yourself? I am feeling so overwhelmed today, for no particular reason really. Just on the edge of tears. No, I am not able to really take time for myself. Whenever I do, some crisis occurs while I am gone and I feel guilty, so at this point it is just not worth it for me to go do something for myself.

A good cry is probably what I need, but that doesn't do good things for Kevin, so I really only cry in the shower. Then I just feel stupid for crying in the shower. I know it is ok to have a pity party once and a while, but right now that requires energy that I just don't have. I should go to sleep. Thanks for listening.

I believe we have tears as stress relievers Karen ans should let them flow if we feel like it. We all understand and so does God and our Angels. If anyone shouls make fun or tease you about it, send them around for an education. Hang in there, Jim

Karen,

Was he tested for HPV?

For the overwhelming majority of us the few weeks post Tx are our worse but then he will walk out of that tunnel and begin to recover which can take all of 2 years so patience is in order for a while.

[quote=davidcpa]Karen,

Was he tested for HPV?

For the overwhelming majority of us the few weeks post Tx are our worse but then he will walk out of that tunnel and begin to recover which can take all of 2 years so patience is in order for a while. [/quote]

Her signature indicates he is HPV "negative".

Karen,

Yes, easier said than done to "do something for yourself." What I did find was that everything seemed to be more of a mountain when I was really tired and sleep deprived. Late at night for sure, I would find myself feeling negative and overwhelmed. Once I had a good night's sleep, I seemed to feel much more positive and able to handle what came at me.

So, while you might not be able to go to the spa or shopping, you can work at getting decent sleep so your body and mind have the ability to take on this hard caregiver role.

RE: the food pump. Our friend ChristineB has some older posts on how she used the pump to conquer her problems with the supplements. She is currently recoving from surgery(s) but you might do a search of her older posts for some suggestions.

Deb

Hi Karen. Reading your post takes me right back to where I was just a few months ago. My husband has his own business. I work full-time as a Secretary at a hospital and I carry the insurance for us. Taking time off to stay home was not an option. I arranged rides to and from treatment for the last 4 weeks of John's treatments. There is no way he could have driven himself. It took all his energy just to get out the door by 10:30am every day for treatment. I had a very difficult time getting John to use the feeding tube and get enough nutrition in him. Eventually I just told him that his body would take twice as long to heal and that the treatments would not be as effective without proper nutrition and hydration. He did have to go back to "Infusion" twice for rehydration. Even with the feeding tube he lost 30 lbs, which he couldn't afford to loose. He eventually started dumping the cans into the pump and would just watch tv and sleep on the sofa (sitting up) for a few hours to get the cans and water in.

You NEED to take time for yourself. It will make taking care of him a little easier. I work full-time at the hospital and I waitress part-time 3 nights a week, so I am very busy but I made time for me. I would take a 20 minute bubble bath with a nice glass of wine or go get my nails done. I also kept a personal journal which really helped me to deal with my emotions which were all over the place. I didn't feel comfortable sharing my fears, sadness and frustration with my kids and family so this gave me a way to release all of those feelings. Being a "caregiver" is so......difficult. You want to be there all the time for your husband but can't, I understand completely. I also would feel "lonely" when I would be at home because John couldn't talk to me and would be sleeping a lot. It will get better.

John couldn't talk for about a month so I couldn't even talk to him on the phone during the day. I would send him e-mails and leave him love letters and cards. I did everything I could to be his #1 cheerleader and only broke down in front of him once or twice. I used to cry a lot in my car driving to and from work. Is your husband taking anything for the nausea? My husband had to take both Zofran and compazine up to a month out of treatment the nausea was so bad. Hang in there. Hugs, Wanda

Wanda,

Must have missed that. Thanks

Today I stayed home from work and Kevin had a much better day. I know he is lonely around here while we are gone. He still slept alot, but I was able to give him the liquid food throughout the day, so I feel much less stressed out. It is a shame I can't be here with him for the next week or two until he really is feeling good enough to feed himself. I did ask the rad. onc. about the feeding pump, and his response was that he was going to talk to Kevin's psychiatrist about the antidepressant prescribed. His view is that he should be able to go 15 feet into the kitchen and feed himself while I am at work, and if he can't/won't get off the couch, that needs to be addressed. So no answer today.

I have tried telling him that he will take longer to heal without the daily amounts of food and water. He will take longer to heal if he doesn't do his oral care. He will take longer to heal if he doesn't try to eat some small bits of anything so he can swallow again. He will take longer to heal if he doesn't attempt to do his oral exercises. He hears me and agrees with me his head, but he doesn't have the will to do anything about it yet. So I am patiently encouraging him to do these things when he is awake and I am home, while still not pushing him to a point of getting frustrated with me. My latest tactic is that I made a sign that hangs right below the tv that says "remember to swish and spit every hour". Maybe it was because I was home today or maybe the sign helped, but he did swish and spit with caphasol 4x today so far. That is twice has much as he as done each day in the past week.

I also went to the chiropractor today (my reason for not going to work) to be adjusted to get rid of the headache I have had for the last 5 days. It is better, although not completely gone. I am dehydrated too, so I have to do better about my own water intake.

Thanks for all the positive and supportive comments I have received from you all. It really is great to converse with folks who know exactly what it feels like to walk in my shoes through this cancer mine field.

Blessings to you all!
Karen

What do you mean by HPV neg/P16 pos ?

Ending Tx Oct 7 and not feeling better by Oct 22 is not that unusual, in fact I think it's pretty normal. But I do agree that you need to push him to eat eat eat and certainly keep up with the dental hygiene.

Hi Karen,
Swallowing regularly is very important or he will lose his ability to swallow altogether. This is a very unforgiving treatment. Likewise with stretching the mouth opening or he will get severe trismus. Have him yawn with his mouth open as wide as he can.

Does he drink coffee or tea? Maybe you could leave a pot of this for him to sip on while you are away. If you set a drink by where you watch TV, you are likely to sip at it. Could also be a pticher of water, apple juice, whatever he can get down via mouth. Keeps the swallowing mechanism working and helps with hydration.

Take care,
Eileen