I’ve been home for over a week now. I have to say, being home most definitely beats being in the hospital!!
Mike is an extraordinary caregiver; so much so that I often feel guilty. It seems every time he sits down or starts a project, I need something else. In the same respect, I’m pretty frustrated that it’s coming to the the point where I can’t really do much at all on my own. Everything I took for granted now smacks me in the face with “NU-UH!” Worst thing possible for a (former) control freak!!
Something to drink? Need a pen? Want a snack? A piece of paper that you know right where it is but can’t explain? Yeah. Too bad for me.
Physically, I’m in a fair amount of pain constantly, mostly through my whole abdominal area. My incision is fully healed from the exploratory surgery, but since the tumor is still there and growing, the pain continues.
My home hospice care nurse is great and answers all of our questions as well as modifies drug dosages to keep me comfortable yet awake. They’re available 24/7, so that’s a nice feeling.
We have wonderful help from our parents and friends, and office staff is an extraordinary group of people whose loyalty and talent make my heart big and proud.
I get so tired so quickly these days! It’s crazy. I have an oxygen tank that I laughed off the first couple of days; now I’m thankful for it. (Although the fine line between keeping it the right spot and not letting it choke me is a bit of a challenge!)
I can’t talk for very long, but I’ve loved seeing my visitors! My cousins are coming this weekend and I cannot wait to see them!!! Although, I do hate falling asleep on people!
I don’t eat much-just nibble. So much almost sounds good but then reality hits and a bite is all I get. I dream of food and places but then I wake up and again, nothing is appetizing. The same with drinks. I wish there were one thing that was consistently yummy, but it varies and is so frustrating!!
This certainly isn’t anything I ever thought would happen to me. A hospital bed in my family room? Crutches to get to the bathroom? Oxygen tank? Planning visitations and playlists? Freaking surreal.
Check your skin people. Check your skin.