I have spent hours lately reading the posts of other caregivers on here so I know that I'm not the first and won't be the last to go through this hell. H has done his chemo and RT with last treatment being 3/12. Did remarkably well in fact...needed very little pain meds, neck healed well, no sign of the tumor on his tongue now. Was scheduled for neck dissection on 4/28 because a lymph node was still enlarged. We get to the hospital and they cancel as his BP is too high. Dr wants to put him in hospital overnight and get BP under control. H says no...took years to get the BP meds right to begin with and they were stopped as he was dehydrated, losing weight, quit smoking, etc. Wants his own doc who has dealt with this for years to take care of it. Surgeon doesn't know when he can get to hospital to ok him leaving and nurse won't take IV out. So H takes IV out and walks out. Took about 2 weeks for family dr to get BP straightened out and then another 2 weeks for surgery to be rescheduled for 5/26. On 5/25 H calls surgeon's service and cancels surgery. His anxiety level is tilt, the antidepressants/antianxiety meds aren't working, he wants a petscan before he'll have surgery, he wants the peg tube out NOW as he hasn't used it in over a month. He's had 2 rounds of thrush in this past month as well. Nothing tastes right and he's sick of eating what little does taste right. He's lost approximately 30 lb so far. Spent my whole afternoon yesterday arguing with medical people to get him what he wants.....petscan is scheduled for 6/12. Can't get the peg tube out as RT doc won't approve because he says he will still need the surgery and therefore may need the peg. H is threatening to yank it out himself. Two hours after I get the petscan set up (not to the doc's liking) and getting his antidepressant changed, and talk to our insurance company about how to get this peg out if surgeon won't remove it, he decides he knows he needs the surgery and it would be smarter to do it that way. Three hours later he's in full rant mode about not having any more treatment at all! So....having reached the end of my rope and hanging on by my fingertips I tell him to fix it himself. The man is bouncing around like a loose tennis ball!!!! In the meantime, I'm trying to work 3 days a week (which now seems like a vacation to me) and take care of 2 kids (ADHD/PTSD - not a vacation at all) and find out my mom needs to see a surgeon on Monday for gallstones.
Anybody got any ideas? Will this pass? I'm sure part of it is being off work this long....he hasn't worked since January. Even if no surgery was needed I don't know if he could go back to work as he has vertigo now (unexplained) and he drives a tow motor. I also think the fatigue would be too much as the company won't let him work less than 40 hr. per week.