Voicelessness and Emotional Survival > Voicelessness and Emotional Survival Message Board
PR's new saga...
lighter:
That your h's humor returned is BIG.... such a relief.
I understand the urge to protect loved ones, and maybe honestly not know what to do instead.
(((((Amber)))))
I'm glad you're in a better space.
::nodding::
hhaw
Hopalong:
Car rides in fear of or in response to scary news are very hard.
I hope y'all hold hands on the way home.
But drive carefully because you have a bunch of Amazons in the back seat (plus a Mud creature probably) and we get very noisy. I believe we are singing at the moment, top volume: https://www.youtube.com/watch?v=ybXrrTX3LuI
It was very nice of you to install a disco light to enhance our performance...
One mile at a time.....(((((((((((((Amber))))))))))))))))
xo
Hops
Meh:
Reading it.
sKePTiKal:
LOL... so THAT's what that noise was... :shock:
Well yesterday was the other side of the roller coaster hill. Again. I don't get sea sick, but if I did, I'd be hurling. First, I got chewed out and told I knew what I said I didn't know, by the defensively abrasive oncologist. But I do think he heard me, that most of my information came directly from M, who was extremely out of it... and that I had not SEEN the hospital notes and that the discharge papers contained extremely little that made any sense to me -- including what appts to make, which ones WERE MADE, what else needed to be scheduled... etc. Apparently there is a communication breakdown between the specialists. I am told this and guarding territory are not uncommon. The oncologist is a bully; but direct. I didn't back down from him and kept asking for more specific information - so I could figure out what I didn't KNOW that I didn't know. I think we came to a truce at the end of that first encounter. And unlike him, I'm more than able to admit when I'm wrong.
The pulmonologist was a bit easier - but had to be brought around to the fact that all this stuff is brand new to us and to bear with me, as I processed information slower than he could provide it and please - repeat that again? The experience for me, is a flash flood of data, information, terms and definitions -- a lot of words to my ears -- with very little meaning attached to them. I literally had to leave the building at one point yesterday, because the claustrophobia panic was starting to set in and it was ME that wasn't able to breathe. Noise, lights, motion and all those words thrown at me... I did OK, though. I did realize that if I didn't do something to give myself a break from all that, I was going to be the one passed out on the floor.
Hubs failed his breathing function test and could not walk 6 minutes, even with 3 liters of oxygen. He had started turning blue and his heart rate was out the roof. Today, someone's calling to schedule a drop off of oxygen and a lesson in safety & use. I've been talking to my retired GP doc friend... and have confused the crap out of him because I was so tired and confused myself, that stuff just came out in a jumble. He says I never told him about the COPD - maybe I didn't; I can't remember.
From my research, hubs has stage 4 COPD. Unlike cancer, that's not a death is imminent category. It just means that without a lot of breathing assistance, the patient can't go about life functions much less get any exercise. The impression I have now - since yesterday - is that none of the docs are all that concerned about the cancer at the moment. It's not growing - so the focus is on the COPD. He'll have 2 more tests - a brain mri, to check for mestastes (sp?) and a full body PET scan. The pulmonologist said surgery is completely off the table at this point. And without saying as much, I got the impression that this second breathing function test was worse than the first, when hubs was in pain the day after the lung biopsy. M said it felt better to him - but he's been on the inhalers for 10 days and isn't in as much pain anymore.
I was sorting out papers last night and looked at the discharge notes again. DING... hubs had said that the docs "were worried" about secondary pneumonia and so they were pumping him full of antibiotics. That wasn't quite accurate, although I accepted it at the time. The fact is, his fever was probably attributable to a case of pneumonia that they were TREATING. The doc friend says be wary of the 2 lbs hubs has gained in 2 days... it could be water weight, and could be onset of congestive heart failure - especially with the exertion of the 3 hours drive, walking through parking lots & buildings... and the tests. DUH; I did not think about that. A walk of any distance feels great to my old butt & hips & head... but I had to wait for hubs to catch up.
NO ONE except my doc friend is telling me "this is where you are" in this strange landscape. If not for that, I'd be burning up a lot more energy trying figure it out myself. M and I are starting to get to the planning stage of figuring things out here, too. We're going to have to make him more comfortable -- without isolating him. My R/L friend Debbie suggested a power recliner... and they sell them locally. Might make a run out this weekend to check them out.
Meh:
:( There is an issue with patients being overwhelmed and a disorganization and communication breakdown between the specialists. Its a real thing.
In the past I worked on a cancer screening program group and my manager was creating a system that basically gave cancer patients a binder and a "program" and a plan. Not all health facilities are quite that pro-active and organized though.
It's like you should be able to take everything and go to a nurse or back to a regular family doctor and just get some sort of de-briefing in simple terms and just tell them how you feel.
I had minor skin cancer and re-constructive surgery and even that was enough to freak me out (I'm a wimp). All of a sudden all this stuff is happening and it feels like one doesn't have a lot of control over it. Biopsies are invasive and all of a sudden they are just cutting out chunks of flesh. Its scary. Its foreign.
Somehow healthcare is a process though and at some point you just have to hope you are going to come out the other side of the system so that life can get back to normal again.
I wish I had something more helpful to say to you. A relative of mine was treated for cancer and due to they had great insurance they had their pick of any facility. They went out-of-state to get treatment and it made a big difference for them personally. Having docs that you trust and you feel are helping you is important it makes it a less stressful experience.
Anyhow. I am reading your posts.
:( I hope it gets better and that both of you are finding some kind of good distractions somehow.
Navigation
[0] Message Index
[#] Next page
[*] Previous page
Go to full version