These are very good posts above and they have prompted some thoughts from my tired brain. It is a given that each patient and each caregiver comes to this situation with a unique personality and circumstance and mostly caught totally unaware. I admit to being a "hyperactive" caregiver during John's illness. However, we were 3 hours[driving time] away from his oncologistgist\surgeon and radiologist. When his surgeries, rad tx. etc. were finished, we were only connected by phone most of the time. And we did not have the option of an ER to rush to if he got dehydrated or got in trouble otherwise. I think there is a caregiver "6th sense" that kicks in when you know that your "patient" is not doing well, be it proper nutrition, hydration, not enough pain control, etc. There were many times that I knew if John did not listen to me, we were "fixing to" be in big trouble.[for all you non-Southerners-fixing to is a real term] So if I sound strident about some of the caregiving stuff, it comes as a result of circumstances. If you are in a city with good medical resources at your disposal 24\7 - that's great. If you are not, I suggest you get your "nurse from Hell" hat ready to wear. Amy in the Oz

Cookey,

My heart goes out to you and Robin.. I was/am a pt so dont have so much caregiver exp, ( unless you consider being a mom such that LOL) I also did not have rad. But I give you credit for staying so strong , because i cant imagine it is easy . I know he is feeling that no control feeling and that is a horriblr feeling, yet i am sure you are experiencing it as well. I just hope and Pray that you will both get through this as smoothly as possible and with love and pateince and understanding ( maybe even a little screaming into pillows and pulling your hair , thats what I'd be doing lol) you will get through this .......My thoughts are with you both

I cant believe how this wretched disease metamorphs in hours.by yesterday evening robin is choking in a sea of vile green mucous.He cant drink anything and is choking on his meds!!!!Last night he had a towel wrapped round his face most of the night because he kept waking up choking the misery in his eyes is heartbreaking.I am just about to ring the cancer centre for some advice.And at last he is not going to work

It can be so horrible watching someone you love going thru this and wishing you could take away the complete misery you see in his eyes even for just a few moments of relief! Wanting to touch him, hold him, comfort him but even that slight movement might trigger the waves of nausea. THis wretched disease and is effects can change in hours or minutes. As others have said, it's a roller coaster ride through a dark tunnel and you are left wondering . .." is the light really there at the end of the tunnel?" But this roller coaster does have its "ups" and you know that when you are in the "down" part, it can and will go up, so hang on to that.

Liz, is Robin sleeping with his head elevated? That seemed to help my son a little. Some nites he slept sitting up on the couch or in his recliner chair and always with the tissues nearby. It's good to stay in touch with the doctor and report and changes in symptoms. or reactions. My son also had really bad reactions to Tx very early on and altho' it is better to try and get thru the treatment without breaks, my son's doctor (after seeing his throat and mouth) did order a week long break twice in he treatment phase.

It is so good that he made the decision to not go to work. You can certainly be proud of him for that. There will be time for work later. I really like Minniea's description of taking control and making decisions from the patient's perspective. As you said earlier, "one day at a time" and sometimes it's moment to moment. Caring for yourself is important, too. Do something nice for YOU. I will help you to stay strong. I'll be thinking about you and sending you a big hug.