Tag Archives: social worker

Home Health Aide

10 Jul

I met my home health aide today. She’s going to come twice a week for now. She’ll do things like vitals and blood draws, helping me with personal hygiene stuff, maintaining my mobility and independence as much as possible with some exercises and stuff, pain management (super important), medication management, taking me to appointments, helping with food/nutritional needs, changing my bed sheets if I need her to…that one was a surprise, and keeping up with my medical record stuff so she can keep in contact with my onc. She seems really nice and I feel like I’ll enjoy spending time with her. Through the same program, they’re also offering me some other services like pastoral services, a physical therapist, their own social worker and patient advocate, a counselor, which I’ve been in need of even though I was turned off from the idea. I hope the counselor is good and that I click with them. I also hope they don’t try to give me any diagnosis of a problem that I don’t have like the last one who said she thought I had OCD. I swear I don’t…having some perfectionist tendencies does not make me have OCD. They offer some other stuff, too, but it was a lot to take in at once. Some other stuff is like bereavement and blah blah blah, but…yeah. I think I’ll benefit a lot from this extra help. It should hopefully keep me out of the hospital so often, goodness gracious! Ugh. And I think it will give my family some peace of mind knowing that there’s someone here to specifically help me.

Hospice?

5 Jul

I have some good news. Once I talk with the nutritionist, I’m getting discharged! My heart is looking good, and since I went yesterday, and my O2 sats are up, and I took a couple of laps around the unit, they’re gonna let me go! That’s really good, that’s great, but before that, I have a meeting with my social worker, Mags, and my patient navigator to talk about the benefits of Hospice. I talked with my onc already about the possibility of stopping treatment, but it’s something I’m going to have to think about for a while. I feel like Hospice would be super beneficial, but I can also think of some people who may be kind of upset if I choose to do that. Luckily, it’s not like I’m being pressured into making any kind of decision. I can think about it for as long as I want. It’s gonna take a lot of thinking and serious conversations, so I’m gonna talk to my parents about it in person when I go home. Also, Hospice has more than just a facility that you can go to, they have home health nurses and lots of other things that I’m gonna learn about today, so there’s that.

Medicated Stream of Consciousness

28 Jan

I talked to my social worker and some other people, we looked at the advanced directives stuff and power of attorney stuff again to see if I wanted to update anything. I feel like that’s a bad sign, is that a bad sign? I keep getting these bad signs, and I’m not sure if it’s just me taking things the wrong way, or if they’re trying to off me! Like their goal just seems to be “progression free” and no one is saying anything like “NED” or “remission” or “cure.” I don’t know if their vocabulary is going to switch up later on, or if those are just not…options for me. I mean, I knew this was going to be a kind of longer term thing, but…uh…I’m like legitimately scared. I’m probably just overanalyzing each individual word and on too much medication, I dunno.

“What a weary time those years were — to have the desire and the need to live but not the ability.”

2 Jan

I found out that my Aunt’s breast cancer came back, and I also found out that my friend’s little brother’s cancer came back in his shoulder. He has osteosarcoma. It’s like everywhere I look it’s freaking cancer, and it won’t leave me, or anyone else alone. Usually I can have a pretty good attitude about stuff like this, or at least an okay one, but seriously, this is becoming just too much. Sometimes I can pretend to be okay long enough to fool myself into thinking that it doesn’t really bother me, but that’s really not working anymore. I have a therapist and social worker and everything to talk to, but I feel like they’re just frustrating me now. They’re saying all the textbook things to say, but they’ve never had cancer. I mean I would never wish for them to or anything, but I feel like they don’t get it. And I know that I’m going to die, I know what stage IV metastatic RCC means…I see the people at the weekly infusions slowly stop coming, or the people that I talk to at support groups or at the infusion center die, and I just have to wonder when that will be me. I’m feeling really discouraged. Like what’s the point in even trying if I know what’s going to happen? I’m lonely here anyways. I just want all of this to be over. Like now.