Colleen[5]: Getting some answers perhaps

Spent almost the entire day with Colleen -- it wasn't my original plan, but I went in around 10am intending to get some training on the IV pump. Which didn't happen until she got hooked at about 1:30. Unlike what we'd been told yesterday, she's now on a 16-hour cycle (which is what she was on last time, and what we'd been told Friday). I got angry at a few people.

The "patient care coordinator" for the weekend is a large guy named Joe, with an insincere, lopsided grin pasted onto his face and apparently very little in his head. He's the one who had the gall to say "this usually runs smoothly" after royally screwing things up to the point where Colleen will have to come home Tuesday and not tomorrow, due to massive failure to coordinate who's doing what, when.

I did, however, get a good lesson in flushing the PICC line and changing the cap -- it's different from the last one. The lessons came from an RN from the oncology department, where they have experience sending people home with IV pumps. We also established in the process that the pump she had was damaged, and got a new one ordered.

I also made certain that somebody would be there tonight at 8:30 to train me in setup. That took a certain amount of being firm with people, but I got a call a little while ago and it'll happen. (She was supposed to train me last night, too, but neither Colleen nor I ever heard from her.)

Colleen became distraught at a couple of points, mainly when not getting a firm schedule for her surgery, and when finding out that she wouldn't be going home until Tuesday. She fell apart yesterday on hearing that she would be on a 20-hour schedule (which turned out not to be the case, but the staff were very insistent that they were right and what we'd been told by the doctor on Friday was wrong).

We've been jerked around a lot, obviously. It's also clear that this disease is a long-term, life-wrecking Big Fat Fscking Nuisance -- it might not be as life-threatening as cancer, but it's certainly life-changing and I think the BFFN tag is justified.

I've also asked to see a psychiatrist tomorrow. Not for Colleen -- she won't have anything to do with them, after some exceedingly bad experiences in childhood. For me, to learn how to cope with this whole "being human" thing, and in particular how to calm Colleen down to the point where she can listen and think rationally again, and how to restructure our mental lives to cope with sudden disappointments. I'm not convinced psychiatry is the answer -- in fact, I'm reasonably convinced it isn't. But it's what they came up with at the hospital.

We're also going to talk with her surgeon and GI doctor, and a dietician (she's been told that she can have liquids, including tea and supplements like Ensure -- loud cheers). She has a visit to our personal physician scheduled for Friday (rescheduled from Tuesday; I'd been hoping to just steal her appointment for myself, but...).

Starport: party report

The party last night was a fairly low-key affair, but several people showed up who probably wouldn't have if they hadn't felt the need to drop by Colleen's hotel hospital room and give their regards.

Got some awesome hugs.

Since I spent most of the evening sitting out in the living room trying to look sociable, if not actually being sociable, I didn't get much of the one-on-one conversations I really prefer. Sorry about that -- you'll have to catch me either online or on the phone if you want to talk. Around lunchtime is usually good, though Monday and Tuesday of this week look kinda shot.

It's been a weekend unconducive to getting things done around the house, but I finally have the bottles cleaned out of the front bathtub to the point where somebody could actually, like, bathe in it.