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Hello! I'm still alive.
My dad's cancer is growing again, the oncologist things that it mutated to adapt to the chemo we used. It's not looking good. The last chemo really knocked him out: he's lost a ton of weight, he can only use a walker to get around (which has been great fun in our shithole of a house) and he's not sure he wants to continue treatment. We'll learn more about the new chemo the oncologist wants him to go on when we go to the appointment on Tuesday(1). The nurse practitioner we saw (who is the main nurse for the oncology place we go to) said that without treatment he should probably go straight on to hospice.
Because of this me and my sis have kind of become his caretakers. My sis is taking care of the day meds and food and I'm taking care of the night meds and food. I'm tired all the time and I pulled a muscle in my neck moving it too fast when I went to roll over in bed. It sucks because I feel like I spend more time caretaking him rather than actually spending quality family time with him, and he has mentioned that he's lonely. It's really hard because ofc my dad is ill, but neither my sister or I are spring chickens anymore (if we ever were).
My chronic fatigue(2)/depression means I'm tired all the time and I get wiped out really quickly. Stress seems to build up really quickly in my system and my body doesn't seem to handle it well either. My sister's ADD is acting up and she's struggling with her doctor to get medicated because as it is right now she's having extreme mood swings, depression, and having trouble remembering things, as well as important things like giving herself her medication.
Sis is doing most of the housework. He psych told her to go out and get some sun so she's been doing the blackberries in the backyard and is now clearing a path to the side of the house to our crawlspace where the plumbers are gonna have to go when we repipe the house(3). She's washing dishes, doing laundry, occasionally moving stuff around.
I'm the secretary and the chauffeur. I take my dad to his appointments, park in the disabled parking (because we finally have a disabled parking sticker just in the nick of time), get a wheelchair, help him out of the car, roll him in, and take notes during them, rinse repeat getting out of the doctor's office and taking him home.
A bummer is that my car (which is the main one we're using right now) doesn't have a trunk large enough for the wheelchair we have to fit so we're also thinking of using the money that was meant to buy my sis a truck(4) to instead buy a car that's a size lower than an SUV but isn't quiiiite as small as a four-door car. I don't fucking know. I just want something that I'll drive... later, and have something I can fit a wheelchair in and take my dad places he can enjoy and maybe my sister too, my car is a two door, and full of shit anyway so family trips would be... problematic lol.
Then we're trying to renovate the house: repipe, get a new roof, get pest control in, get rid of that asbestos ceiling somehow, declutter, get stuff out to good will, drop off books we won't read at the library, install a garbage disposer, get a new recliner for my dad to sleep in (furniture buying is hell for disabled people I don't know how normal people do it), etc.
We do have home health coming in. My dad is having PT come in twice a week for three weeks and then once a week for another three. We're also going to get Occupational Therapy to come in. Palliative care is coming in for a consult on Wed, we're getting meals on wheels to come in and assess on Monday, I've got games coming out on Tuesday and Friday that I'm looking forward to(5) which a not-so-anticipated trip to the neighboring now 15 mins away.
And this is all practical stuff, not even going into any depth on the emotional side of things: what I'm going to do after my dad passes away (get a grief counselor immediately). I feel like there's this yawning/gaping black hole with teeth just floating around behind me wherever I go and for the most part I'm able to ignore it but it's spine chilling when I pay attention. I feel like I'm holding it together fairly well (with a few moments of suicidality when it gets really bad, but people know about it, and I know about it and I can mitigate it (my psych has point-blank told me to take more anti-anxiety meds lmao)) but I feel slightly brittle, and I worry about what will happen to that crust around me and that gaping hole behind me when he does pass away.
I'm gonna stop here for now. I'll try to be better about writing here more often again, but as usual, this seems to be the place for me to dump all of my drama looooool. Love you whoever reads, hope you're having a good one.
[let me know if you want me to put a cut-text on this to be polite, I'm just too lazy at the moment]
(1)(which was supposed to have been last week, but he was out of the office and his nurse aide wasn't able to tell us much besides "I'm not really qualified to tell you about this" and shades of "shit sucks" in a very empathic kinda-in-a-hurry-way. I miss our old oncologist but he fucked off to Hawaii to teach at a university. I am jealous.)
(2)which my PT is not actually totally convinced is CFS because I don't have some of the symptoms needed for a diagnosis, but I don't know how to tell my family that "oops, this horrible thing I've been talking about to validate being exhausted all the time isn't actually a thing it's [unspecified *shrugs shoulders* thing] instead. Which I might appreciate advice about if anyone is still out there haha.
(3) They're gonna have to take walls down, and they looked up at the ceiling of the computer room and said oops, that's popcorn asbestos probably and we don't fuck with that you need to get an abatement person out here, and now I'm wondering if Mesothelioma is in my future HAHAHA.
(4) because we thought we'd get her to get over her driving anxiety before we learned she's legally blind without her glasses and has no peripheral vision and the eye doctor told her seriously to not drive.
(5) Master Detective Archives: Rain Code, which is done by the same art people who have done Danganronpa, a series that I love, which looks like great janky fun. I really love their cliched over-the-top characters, which is coming out on Friday. And then on Tuesday is the remake of Harvest Moon A Wonderfull Life + Another Wonderful Life which is now Story of Seasons A Wonderful Life, and I'm particularly excited because there's same-sex marriage and even apparently an option to play as a nonbinary character.
My dad's cancer is growing again, the oncologist things that it mutated to adapt to the chemo we used. It's not looking good. The last chemo really knocked him out: he's lost a ton of weight, he can only use a walker to get around (which has been great fun in our shithole of a house) and he's not sure he wants to continue treatment. We'll learn more about the new chemo the oncologist wants him to go on when we go to the appointment on Tuesday(1). The nurse practitioner we saw (who is the main nurse for the oncology place we go to) said that without treatment he should probably go straight on to hospice.
Because of this me and my sis have kind of become his caretakers. My sis is taking care of the day meds and food and I'm taking care of the night meds and food. I'm tired all the time and I pulled a muscle in my neck moving it too fast when I went to roll over in bed. It sucks because I feel like I spend more time caretaking him rather than actually spending quality family time with him, and he has mentioned that he's lonely. It's really hard because ofc my dad is ill, but neither my sister or I are spring chickens anymore (if we ever were).
My chronic fatigue(2)/depression means I'm tired all the time and I get wiped out really quickly. Stress seems to build up really quickly in my system and my body doesn't seem to handle it well either. My sister's ADD is acting up and she's struggling with her doctor to get medicated because as it is right now she's having extreme mood swings, depression, and having trouble remembering things, as well as important things like giving herself her medication.
Sis is doing most of the housework. He psych told her to go out and get some sun so she's been doing the blackberries in the backyard and is now clearing a path to the side of the house to our crawlspace where the plumbers are gonna have to go when we repipe the house(3). She's washing dishes, doing laundry, occasionally moving stuff around.
I'm the secretary and the chauffeur. I take my dad to his appointments, park in the disabled parking (because we finally have a disabled parking sticker just in the nick of time), get a wheelchair, help him out of the car, roll him in, and take notes during them, rinse repeat getting out of the doctor's office and taking him home.
A bummer is that my car (which is the main one we're using right now) doesn't have a trunk large enough for the wheelchair we have to fit so we're also thinking of using the money that was meant to buy my sis a truck(4) to instead buy a car that's a size lower than an SUV but isn't quiiiite as small as a four-door car. I don't fucking know. I just want something that I'll drive... later, and have something I can fit a wheelchair in and take my dad places he can enjoy and maybe my sister too, my car is a two door, and full of shit anyway so family trips would be... problematic lol.
Then we're trying to renovate the house: repipe, get a new roof, get pest control in, get rid of that asbestos ceiling somehow, declutter, get stuff out to good will, drop off books we won't read at the library, install a garbage disposer, get a new recliner for my dad to sleep in (furniture buying is hell for disabled people I don't know how normal people do it), etc.
We do have home health coming in. My dad is having PT come in twice a week for three weeks and then once a week for another three. We're also going to get Occupational Therapy to come in. Palliative care is coming in for a consult on Wed, we're getting meals on wheels to come in and assess on Monday, I've got games coming out on Tuesday and Friday that I'm looking forward to(5) which a not-so-anticipated trip to the neighboring now 15 mins away.
And this is all practical stuff, not even going into any depth on the emotional side of things: what I'm going to do after my dad passes away (get a grief counselor immediately). I feel like there's this yawning/gaping black hole with teeth just floating around behind me wherever I go and for the most part I'm able to ignore it but it's spine chilling when I pay attention. I feel like I'm holding it together fairly well (with a few moments of suicidality when it gets really bad, but people know about it, and I know about it and I can mitigate it (my psych has point-blank told me to take more anti-anxiety meds lmao)) but I feel slightly brittle, and I worry about what will happen to that crust around me and that gaping hole behind me when he does pass away.
I'm gonna stop here for now. I'll try to be better about writing here more often again, but as usual, this seems to be the place for me to dump all of my drama looooool. Love you whoever reads, hope you're having a good one.
[let me know if you want me to put a cut-text on this to be polite, I'm just too lazy at the moment]
(1)(which was supposed to have been last week, but he was out of the office and his nurse aide wasn't able to tell us much besides "I'm not really qualified to tell you about this" and shades of "shit sucks" in a very empathic kinda-in-a-hurry-way. I miss our old oncologist but he fucked off to Hawaii to teach at a university. I am jealous.)
(2)which my PT is not actually totally convinced is CFS because I don't have some of the symptoms needed for a diagnosis, but I don't know how to tell my family that "oops, this horrible thing I've been talking about to validate being exhausted all the time isn't actually a thing it's [unspecified *shrugs shoulders* thing] instead. Which I might appreciate advice about if anyone is still out there haha.
(3) They're gonna have to take walls down, and they looked up at the ceiling of the computer room and said oops, that's popcorn asbestos probably and we don't fuck with that you need to get an abatement person out here, and now I'm wondering if Mesothelioma is in my future HAHAHA.
(4) because we thought we'd get her to get over her driving anxiety before we learned she's legally blind without her glasses and has no peripheral vision and the eye doctor told her seriously to not drive.
(5) Master Detective Archives: Rain Code, which is done by the same art people who have done Danganronpa, a series that I love, which looks like great janky fun. I really love their cliched over-the-top characters, which is coming out on Friday. And then on Tuesday is the remake of Harvest Moon A Wonderfull Life + Another Wonderful Life which is now Story of Seasons A Wonderful Life, and I'm particularly excited because there's same-sex marriage and even apparently an option to play as a nonbinary character.
