Who takes care of the caretaker?

[Suu]

I was warned.

Oh, I was warned.

I was going to get a maximum of 3 months of "help", more likely a month.

It started off fine. People flocked to throw money at GFM, they offered services from across the country (somehow), and pretended to enter their information in a google form for contact when the going got tough.

And then then disappeared.

Sure, the mother-in-law was here. She sat on the fucking couch reading social media while I cooked, cleaned, went to work, went to class, and cleaned up my husband's vomit in between. It was sure nice of her to water my plants and do his laundry, though. Oh, she started dinner one day because he was hungry before I came home from work. He made sure I brought her everything she needed, too. After she didn't shower for a week, I finally pried out of her that she needed shampoo, but she couldn't be bothered to ask for a ride to the store. Yes, a ride. She can't drive, you see. I had to cart her places, and my mom drove the hour to help get Jeff home from chemo on the days I could not. I warned them both about cleaning the kitchen completely after cooking or the bugs would come back. Within 2 days of this warning, she complained about seeing a bug. Why don't I simply find a better apartment?

I was offered housekeeping help by nearby friends. I asked them to show up last week. "Oh," they said, "Something came up." Nothing since.

I was offered meals by local friends. "Oh," they said, "You have weird dietary needs. Can you just order takeout every night?" The only people still bringing me food are the vegans. THE VEGANS.

When my messaging liaison posts on social media asking for more assistance, the answer is always, "I'm too far away, sorry." My mom still drives an hour to give my husband and ride, and then drives right back despite, "hating city traffic".

I've been yelled at about staying in school. I've been yelled at for working. He's my vocation, you see, he's my sole purpose to exist. This "sole purpose" made it perfectly clear I need to continue to work and study and have a life. I can't hover over him all day, it's not good for me. But he also runs out of breath doing the dishes and then whines that I can't help him enough. I choked in the kitchen last night tasting dinner, and had to kick on a cabinet for help as I gasped for air. By the time he got into the kitchen with water, my face was purple and hot. Dinner got burned. Good thing the MiL left otherwise this would have been my fault.

I go out to an art opening for a friend, I feel guilty.

I have a glass of wine after work, I feel guilty.

I came home yesterday to a mess of trash from projects he started, but got too tired to finish. So, before I could sit down, I had to bring it all to the dumpster after feeding the cat. By the time I did sit down, I burst into tears because the first thing I was asked was to get dinner started. I was stuck in traffic for an hour because of a concert on campus. I literally forgot how to drive while going to pick up dinner at the meal prep place 20min away. All I wanted to do was sit down with a glass of water for a few minutes.

I'm behind on my reading and assignments for the week. Again.

This is my new normal, though. I have been told to suck it up, and deal. I've also been told I'm getting fat again and I need to "devote time to myself" and get back in shape and maintaining my diet. When? I don't even have time to vacuum.

Sure would be nice to have all that help people promised 2 months ago. Now they're just asking if he's dead yet to get out of their empty promises.

I was told I "have to take care of myself" by the same people who call me fat and tell me I needed to quit everything to devote my entire life to him.

I'm still disappointed COVID didn't kill us all off.

But hey, "I gotta take care of myself."

[Doktor Howl]

Yeah, I used to have friends like that.  Then I got the shocking realization that I only have a dozen or so actual friends.  It took a long time to get over being angry at people for not being what I thought they were.  So believe me, I feel you.

The friends you have with you when you are in need are the only friends you have.  The rest are acquaintances.  If you treat acquaintances like friends, you're going to get hurt.

The principal difference is that a friend cares for you as a person, not just a laugh or a good time.

Also:

I've been yelled at about staying in school. I've been yelled at for working. He's my vocation, you see, he's my sole purpose to exist. This "sole purpose" made it perfectly clear I need to continue to work and study and have a life.

The sole purpose is correct in his opinion.  Assuming the worst happens, these same people will then berate you for not working or studying to be able to fend for yourself afterward.

90% of everyone are shitbags.  You can avoid noticing this until one day you can't avoid it.

[Suu]

Yeah, that whole, "I need to take care of myself" vibe has turned into a screaming fibro flare today.

I also really like the part where it went from, "How can I help?" to, "I can't actually help, how long does he have?" Basically, "I want him to die so I am free from this social contract and can just show up for snacks at the funeral."

People are fucking terrible, Dok. You're right.

[Doktor Howl]

Yeah, that whole, "I need to take care of myself" vibe has turned into a screaming fibro flare today.

I also really like the part where it went from, "How can I help?" to, "I can't actually help, how long does he have?" Basically, "I want him to die so I am free from this social contract and can just show up for snacks at the funeral."

People are fucking terrible, Dok. You're right.

Most people truly do have an aversion to the suffering of others.

The people worth knowing will deliberately work past that.  The ones that are not worth knowing will do as you describe, or even chastise you for "demanding emotional labor," because THEY'RE the victim here, buddy.

Also, I missed most of this on FB because I got deleted.  I only knew that he was sick with cancer or something.

What's going on?

[Anna Mae Bollocks]

I didn't even know about the cancer. I guess facebook was too busy showing me bullshit.
Ouch. It sucks just knowing that.
Dok's right, I agree. Get rid of the people making this worse, as much as you can. You obviously don't need worse with something like this going on.

[Suu]

Long story short, after deployment, Jeff started to get upper right quadrant pain. The boat's doc chalked it off as gas, an ulcer (WRONG SIDE OF THE STOMACH ASSHOLE), and acid reflux. Anything they could to stop him from getting fully checked out. On the 4th of July he went into acute liver failure and went to the ER the day after. He was 2 days from death. Biliary blockage, sounded to me like bad gallstones.

No. The blockage was because his liver is being consumed by innumerable neuroendocrine tumors that metastasized from a mass in his sigmoid colon. It's also in his lungs, bone (spine), and sticking on random things in his torso. He went from being arguably normal and healthy to a stage 4 cancer patient in 3 weeks. They stabilized his liver with a stent and lots of meds, and then the chemo started. 2 rounds at the Naval Hospital in VA, and now he's here in Tampa at one of the best cancer centers in the nation because there was no fucking way I was going to let him continue to stay up there when I'm here, and I have Moffitt.

Neuroendocrine is rare. The usual suspect of colorectal cancer is adenocarcinoma. Neuroendocrine is its own evil fucker that accounts for only 7000 diagnoses per year in the US, and usual in men over 60. It's almost always found metastatic because of the way it flies under the radar. It spreads by corrupting hormones and shooting them off versus pieces of itself. It is pure fucking malice. We don't know how he got it, there's some genetic predisposition to cancer, but not this type. The radiation he gets on submarines is less than the sun, and bubbleheads are subjected to regular physicals. However, he did complain of bloody stools 2 years ago (I saw it, I made him say something), and again, the doc chalked it off as hemorrhoids. Friends: bleeding from the ass is not normal. 2 years for cancer is a damn lifetime. The oncologist at the naval hospital was PISSED when he found out, because we could have just been dealing with polyps at that point, not a 6cm cue ball. I plan on reaching out to a lawyer soon. Corpsmen are not being trained properly and are putting needs of the Navy ahead of life threatening conditions. I'm no doctor, but I know better than to fuck around with severe abdominal pain and bloody shit.

Prognosis is grim, we're looking at 6 months to 2 years on just chemo, but, imaging shows tumor necropsy after 2 rounds, so the Navy did give him the right cocktail, and then Moffitt tweaked it to reduce side effects. He has round 4 next week, and he's halfway through with this infusion schedule. The largest tumors have shrunk by 2cm, this is an excellent response, but not all of them are responding. His liver looks like its full of marbles. Because of the stage of this disease, he is not a candidate for transplant. This is it. We get it under control and we keep him alive for as along as the drugs work. Once they stop working? Welp. Moffitt is going to see about immunotherapy, which is powerful and effective in the long term, but not always against this type of cancer. If it takes, we're looking at a potential 8-10 years added back on his life. (Seriously, this SCIENCE is fucking GLORIOUS) but it all depends on what continues to respond to the chemo. He's already bald, can't taste shit, lost 25lbs, and sleeps all the time. Compound this on a hip injury the Navy also didn't look at (not even a fucking X-Ray or MRI which could have detected anomalies sooner) and he's moving slow. His appetite is good, and his nausea is controlled by medication. His largest tumor in his liver has shrunk enough to where its off his abdomen wall, and he can lay on his side again while sleeping. (I could see the hematoma, fucking horrible.)

His team at Moffitt is amazing. He's in phenomenal hands and we're optimistic about treatment since he's already showing response. But, I'm also a realist, and so is he. We took out a life insurance advance and cleared all debt.

This whole thing fucking sucks. He's just 41.

[Doktor Howl]

Well, that really sucks, and I'm sorry this is happening to you two.

I only met Jeff a couple of times, but I like him a great deal.

[Suu]

Well, that really sucks, and I'm sorry this is happening to you two.

I only met Jeff a couple of times, but I like him a great deal.

He's too good for me, really. Figures.

But he's handling chemo like a fucking champ, just sleeping a lot.

I got this today. The teal/white is for my cervical cancer, the zebra is for his neuroendocrine.

[Suu]

His white blood cell count is too high, rather than dropping.

This could be a side effect of the chemo, or, indicative of possible leukemia, which means metastasis into his bone marrow.

This is fine. 

[Suu]

Trying to cope with my own shit: Anger projection.

I'm not exactly Ms. Sunshine on an average day, but I did work pretty hard to reduce my anger for several years, mostly after Jeff and I got together. That self-awareness went up in smoke. Thanos snapped and so did I.

I'm both amused and horrified at my behavior. On one hand: it didn't take long to unravel years of growth and therapy, on the other, I turned back into the heartless monster I was known for. So well that I got myself a perma-ban from Twitter. Don't get me wrong, they totally deserved it, but Twitter also needs to be held accountable for their population of white supremacists they still allow on the platform. I'll get consistently attacked and my DMs flooded by the usual deplorable suspects, but this week I went full on no quarter and got what I deserved I guess. My patience is non-existent, and my empathy is well and truly gone. When my drunk mother tried to lament to me how her marriage to my father is falling apart (it has been for decades, really), I stood there without emotion and asked her if she was trying to usurp the fact that my husband is fucking dying, or if she really cared that much if my dad got her a cake for her birthday or not. I flat out told her that once Jeff was gone, I was taking off and never coming back.

The truth is, I don't really fucking care, and while that sounds like a good thing, I feel like a goddamn psychopath. Either I feel nothing at all, or I am ready to burn it all down, with nothing in between. It's 100% a trauma response, but it's starting to have consequences. Twitter doesn't matter, but my abrasiveness at school is going to start causing issues, so I need to check myself. Losing the support of my family will cost me as well.

Self-care is a fucking joke when things get like this. I haven't even found time to color my hair before I go on a trip this week for school.

[Doktor Howl]

I'm both amused and horrified at my behavior. On one hand: it didn't take long to unravel years of growth and therapy, on the other, I turned back into the heartless monster I was known for. So well that I got myself a perma-ban from Twitter. Don't get me wrong, they totally deserved it, but Twitter also needs to be held accountable for their population of white supremacists they still allow on the platform.

Yeah, that's pretty much why I haven't gone back to FB or Twitter.

I flat out told her that once Jeff was gone, I was taking off and never coming back.

You're never too old to do the Lido Shuffle.

[Suu]

You're never too old to do the Lido Shuffle.

WHOAHOOOOOAHHHOOOOOOO

Change Chi-Town to Tucson. WHAT COULD GO WRONG

[Suu]

Holy shit, I Am Tired.

That is today's rant.

[Doktor Howl]

You're never too old to do the Lido Shuffle.

WHOAHOOOOOAHHHOOOOOOO

Change Chi-Town to Tucson. WHAT COULD GO WRONG

Nothing!  We're literally up to our noses in potable water!  It hasn't stopped raining since June 12th.  We all died.

[Suu]

Nothing!  We're literally up to our noses in potable water!  It hasn't stopped raining since June 12th.  We all died.

TRADE OFFER:
https://www.nhc.noaa.gov/refresh/graphics_at4+shtml/205737.shtml?cone#contents