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16 hours ago, Severine said:

Noooooo I didn't think you were whining or crying for help at all. Sorry, I just said it wrong. It was supposed to be admiration at how you're coping, not an implication that you were whining or anything. Quite the opposite. Like, bad things are going on but you're still able to function and engage in conversation, etc. I'm partway through your other thread and so I don't want to talk too much about the resilience stuff because I'm going to talk about it there, but I just mean that even if you feel like you need to work on the emotional resilience or mindset, you've definitely got core aspects of the practical resilience down.

 

And I don't feel bad exactly, just like...sympathetic solidarity feelings and hoping you feel supported, if that makes sense? I know there is more hard stuff coming and it's going to be really tough, and we can't really do anything about it. But I hope you get some encouragement from knowing all of us here care about you and will do whatever we can, not because you're weak and need help, but because we're your friends and people try to be good to their friends, especially when times are rough.

 

The stuff about your mum is just heart-wrenching. My heart goes out to your whole family. And it's so familiar. We went through all of the same stuff with D's dad at the end of 2016. And you're not alone for hating the uncertainty, and even sometimes wishing it would end despite what that means. Like even D's mum, in the last few weeks, was saying that. And it's hard but also totally natural and doesn't make you a bad daughter or anything like that. Honestly I think it's a really good thing that you've got realistic expectations about where things are going, and not hoping for a miracle recovery. It's acceptance. And all the thoughts you're having, even if they feel macabre or selfish or whatever, are part of your brain's effort to prepare yourself and be ready for it. As much as possible, try to let yourself feel whatever you feel without judgment. 

 

And although it sucks that meeting her goal opened up the uncomfortable "what next?" question, in a way that's a kind of victory too. Like, she has the luxury of needing to find a new goal, or maybe passing away without a goal because she already did the most crucial things. It seems like it was really important to her to be at graduation, and she must feel really good about making it. I think it's pretty beautiful that, in the middle of all this, she had a victory. And yeah it doesn't change the end result, but it's a spot of defiance in the face of something big and terrifying. It's like how D's dad, two weeks before he passed, was able to sit at the dinner table with everyone else at Thanksgiving and give a toast. He was hooked up to an oxygen tank and looked awful, but god damn it he was there. From one angle it was depressing - that we were celebrating such a thing as a victory. But hey, that's what was going on, and we found something to celebrate anyway. Those little moments of defiance help people heal, I think.

 

I'm sure your mum knows you love her whether you say it or not. If you can't say it, but want to tell her, you could always send a letter or something. 

no no, it's fine! I just realized that I know some people who would use that kind of line to get you to ask what's wrong so then they could unload on you without technically having brought it up. And I hate that and hoped it didn't come off that way. I'll take the admiration (even though I don't think I deserve it). (Which is also not fishing for praise or anything. It's like, even though I know my brother is totally shutting down and other people fall apart completely in situations like this [no judgment], I don't feel like what I'm doing is all that special? Because my choices are deal with it or don't, and shutting down really isn't a viable option. So what else would I do?)

 

I appreciate you and everyone else being around. Sometimes I feel bad because like, maybe people don't want to hear about it all the time. But I remind myself you can always hit the back button if need be. (And honestly if anyone doesn't want to hear about this anymore, I won't be offended. And/or I can start putting it all under spoilers with warnings.) Even though there's nothing to be done except exhaust the internet's troves of cat pictures, I appreciate it. Especially because talking about this shit in person is basically impossible. I don't mind crying over it, but having a conversation while doing so is not a skill I've mastered yet.

 

I do feel bad sometimes talking about all of those knowing you just recently went through it and I hope I'm not stirring anything up. But yeah, I remember when my last grandmother was dying, we all just hoped she'd let go because things were so bad. (Hers was a special case though. She was super Catholic and was convinced that declining treatment that probably wouldn't do anything anyway was akin to committing suicide, which of course is a no-no. And her asshole pastor wouldn't come tell her otherwise. Plus she died on 12/29 and we were all sure she held on because she refused to die on/around Christmas.) Aaanyway. Yeah. I know it's more or less normal to hit this point and I'm not really judging myself for it but it's still unpleasant, at the very least? And it feels like to early to be at that point. It's funny, when this first started I was worried she'd go as quickly as my grandparents all did, and now I'm worried it's going to drag out. She's not in terribly awful shape yet. Apparently the most recent set of scans show no growth in any of the tumors. But she does keep getting infections and having the random complications. She should be using a cane or a walker but she's too stubborn to; she's unsteady and leans to the right a lot when she's walking. Her memory is cloudy more often than not and she can't find words. Her appetite is basically non-existent on a good day and even when she's hungry she doesn't enjoy anything because the chemo is changing her tastes. And I don't want her to roll over and die but I also find myself wondering "what's the point?" Because this is a losing battle. Is it even worth it? A few months ago she said she was still determined to be the first person to survive pancreatic cancer and I'm just... optimism is great and necessary but come on. You smoked a pack a day or more for 30 years, never got any kind of exercise at all, ate like shit, were overweight for a long time, and have several chronic non-communicable diseases. I'm sorry I can't get on board there. She was talking about going down to either Foxwoods or Mohegan soon with people from work and I'm just like, what the actual fuck? She can't stand or walk for that long and the 2-hour bus ride each way probably won't be fun either.

 

Yeah. I'm really glad she got that win. Obviously I'm glad she was able to make it for selfish reasons, but I'm also glad she didn't go earlier and regret not making it. (Her mother died a month before I finished undergrad, and I guess at some point near the end she looked at my mother and said "I didn't get my granddaughter a graduation present!" I don't know how with it she was and if it was a regret or a sudden realization or what, but I'm glad it didn't happen this time.) Her next goal is going to my father's family reunion on June 10th, but I think that's just because it's a convenient date/event to shoot for. My brother's birthday is July 11th, and there's nothing before/after that that I know of that would be a goal, convenient or otherwise. Her long-term (ish) goal is to finish crocheting a blanket for my brother by the fall but to my knowledge she hasn't worked on it in a while. You're right. It sucks, but you really do have to celebrate the little things. Because they're not so little at this point. 

 

The problem is it doesn't feel genuine. Like I can say it in jest, like "I still love you even though you just said that stupid thing" or "that's why I love you." But on its own, I don't feel like I mean it. I care about her, sure. And I'm upset that she's dying. I don't hate her. But our relationship has been strained for a long time. We just don't connect. I told my therapist once, I think I may have said it here too, that part of the reason I'm so crushed about all this is that I'm basically mourning the relationship we never had and won't get to have. I said a thousand times before this all started that if I came out and they never spoke to me again I'd be okay with it. And I really would have. But a situation like this basically highlights everything that's wrong. And I think she's been thinking about it too. Like at Christmas I forget what brought it on, but in terms of my childhood or something she said "I know we could have done better, but I think we did okay with you guys." And when I went home two weeks ago she found a picture of my brother and I with Pluto at Disney World (4 & 6, I think) and said "What happened to those kids? Where did they go?" And every time she thinks I'm seeing someone she latches onto it. When I came out I said I hadn't planned on doing so unless I met someone that necessitated it and she immediately went "did you?" The time I went home and surprised her I said I couldn't talk after therapy that night like we'd been doing because I had to meet someone for class (I was going to be on a plane at the time) and she told me later she thought I'd had a date. And just yesterday she completely misunderstood something I said and was like "did you just say you met someone?" She's never taken an interest in my dating life (or complete lack thereof) before so I have to assume that it's because of what's going on. Getting back to the main point, I don't know that i could say it even in writing. It would feel weird and still not genuine. I should probably suck it up and try to say it anyway but when I've tried before it just gets stuck. Like a bad romance novel. 

 

Ugh Pandora's currently playing the Epilogue from the Les Mis movie and reminding me I hated 99% of that cast.

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She got released today with antibiotics that should hopefully wipe out the 3(!) strains of bacteria happening. 

 

I had a larger post started earlier but I've been in a mood all day and didn't feel like finishing it. 

 

Also I haven't left the house since getting home at 3:30 Friday afternoon. Probably not a good thing. 

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6 hours ago, fleaball said:

Also I haven't left the house since getting home at 3:30 Friday afternoon. Probably not a good thing. 

So many times this has happened to me too. Might be good to get outside for a bit, yeah... Also know how hard it is when stuff is happening like it is to you. :/ *hugs*

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Thanks ladies. <3 I do plan on getting out of the house today for reals. It's cooler than expected and not raining like they said it would, so I'm going to run some errands walking the long way instead of taking the bus.

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On 5/14/2017 at 10:34 PM, NeverThatBored said:

 

Keep in mind that it feels good to help people! People generally like being able to help others. It sounds to me like she's happy to help out because she likes and cares about you, and she's probably happy that there's something she can do to help you and your parents out. 

Hi, 

I'm new here. I have to agree with NeverThatBored. This is something I have trouble with that people tell me all the time: It is ok to accept help, especially when it was offered. And even more it's ok to ask for help. Which I have to admit, I almost never do. I know that by now your Graduation is probably done. I want to say Congradulations!

 

Azizah

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8 minutes ago, Azizah said:

Hi, 

I'm new here. I have to agree with NeverThatBored. This is something I have trouble with that people tell me all the time: It is ok to accept help, especially when it was offered. And even more it's ok to ask for help. Which I have to admit, I almost never do. I know that by now your Graduation is probably done. I want to say Congradulations!

 

Azizah

Thanks for stopping by! And thanks for the congratulations. I'm working on asking for and accepting help. For me it's less about "oh no I need help because I suck" and more being afraid I'm bothering people when they help me. But it's a work in progress. :)

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Fleaball, 

 

After I read about your Graduation, I read about all the other stuff going on in your life. Wow, your plate is full. I don't have any great advice, other than breathe. It can be done anywhere, specifically a slightly meditative breathing.

 

Here is my suggestion on what I mean: Count your breaths, inhale then exhale =1 breath. Try to breathe deeply and slowish.  Count your breathing up to 5, then repeat. It is more difficult than you think. If you lose track, start over with 1. Set a timer on your phone and try for 1 minute (Maybe after a week or of it you can move up to more like maybe 3 minutes). So basically you are counting to 5 over and over with breathing.  I say one minute, because you can probably take 1 extra minute while you are in the bathroom and no one will know.  I find breathing helps me with just the barest amount of distance from emotions, and even that tiny bit of distance can make a  big difference. 

 

I hope that helps. 

Azizah

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16 minutes ago, fleaball said:

Thanks for stopping by! And thanks for the congratulations. I'm working on asking for and accepting help. For me it's less about "oh no I need help because I suck" and more being afraid I'm bothering people when they help me. But it's a work in progress. :)

   I'm the same, I feel more concerned that I'm bothering people. 

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14 minutes ago, Azizah said:

Fleaball, 

 

After I read about your Graduation, I read about all the other stuff going on in your life. Wow, your plate is full. I don't have any great advice, other than breathe. It can be done anywhere, specifically a slightly meditative breathing.

 

Here is my suggestion on what I mean: Count your breaths, inhale then exhale =1 breath. Try to breathe deeply and slowish.  Count your breathing up to 5, then repeat. It is more difficult than you think. If you lose track, start over with 1. Set a timer on your phone and try for 1 minute (Maybe after a week or of it you can move up to more like maybe 3 minutes). So basically you are counting to 5 over and over with breathing.  I say one minute, because you can probably take 1 extra minute while you are in the bathroom and no one will know.  I find breathing helps me with just the barest amount of distance from emotions, and even that tiny bit of distance can make a  big difference. 

 

I hope that helps. 

Azizah

It does help. I'll try to remember this going forward. Thanks!

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Found myself looking up plane and train tickets home on Sunday. Because I feel guilty being here and not there. Both my parents are complaining about the house being a mess. My father is exhausted (he keeps waking up after only a few hours and not being able to get back to sleep) and he's doing everything, my mother can't do anything, my brother doesn't do anything. I know it's not up to me to fix things but it feels like I need to go up and help anyway. Except I know I really can't afford to be popping back and forth so often and I really do need to get a job, which means being available for interviews. It's just really frustrating not to be able to do anything to help. Also each time I've been back they've apologized about the condition of the house, but when I've offered to do even small things I'm told no. So I feel guilty about a thing I'm not even allowed to help with. Ugh. 

 

Wrote that paragraph yesterday, then called my mother and didn't feel like finishing the rest of the post. Apparently she's dead set on hiring a cleaning service. I'm pretty sure there's no one out there who will come in and clean and organize your house for you unless you're on Hoarders, but okay, sure. And then when it's clean she wants to get the first floor painted. And then replace some plumbing. This has apparently become her next short term goal, which... what? That worries me. Like, are we rushing it because you want it done before you die (and have wanted it for years but never done anything?), or is it getting drawn out because you refuse to die before it's done? How is this going to work if there's no date for it? Like how is that a goal? And it hurt because then she started going off about how the house has been shit for years and she didn't keep up with it etc. I mean yeah, it went undone forever. But she also has fibromyalgia and I'm sure she has undiagnosed depression. Neither of which she ever tried to manage. So I'm stuck on feeling awful because she feels bad/guilty/whatever about this thing, but also frustrated as hell because a) she won't let me help and b.) it is a thing she could have been managing better for years if she'd fucking taken care of herself and learned to deal with having a chronic illness but she never did. And that pisses me off both for her not trying to deal with it and also because her life has just sucked. And honestly looking back it hurts because I feel like I was robbed of a childhood I could have had? I get it, living with a chronic illness is hard (as is depression) and there are times where you can't do anything and have to accept that. I never want to experience that. But there are ways of coping with it. Diet and other lifestyle changes, light exercise, etc. Obviously we all know those are easier said than done for anyone, but we spent all our school vacations inside and not doing anything or going anywhere. We didn't play outside because there were no other kids to play with and she couldn't/wouldn't come outside with us. But it wasn't really explained to us that she had this thing that limited her. So it was just my normal that other kids I knew went and did things with their families and we didn't. 

 

Right. That came out of left field. I swear I come on to make more or less innocuous statements and wind up with all these profound realizations my therapist is always proud of when I relay them to her. 

 

The other thing that made me feel bad while talking to my mother a few days ago was her saying, "I just really want a puppy." I've sort of felt bad about this for a while even though it has nothing to do with me? We had a dog that we got in 1994 and had to put down in 2011 and she was a cool dog but not really fun? My father and brother didn't do well with her gone and my brother started looking up cats on petfinder or whatever. (I forget whether he took it upon himself or was encouraged or what. Idk.) So we got him two weeks after the dog was put down. My mother was reluctant and doesn't really like cats. I think there may have been a plan to get a dog at some point? And then just before Thanksgiving 2013 we wound up taking in my grandparents' cat while my grandmother was in the hospital and he became ours forever a few weeks later. The two of them don't get along super well because we fucked up introducing them to each other, so any possibility of a dog kind of went out the window. My brother and I have been jokingly asking for a third cat for like every major occasion since, and she's always said "no if we get anything else it will be a puppy." So like, that was a real thing. And she didn't get it. And I feel bad. Even though she's an adult and there could have been a discussion about it or something. I guess I'm just upset because a.) she's dying so it's never going to happen anyway and b.) the way she said it on the phone was just so sad? I'd like to chalk it up to medication and being tired and whatnot but it honestly broke my heart. And there's nothing that can be done about it. She'd be unable to take it for walks alone or clean up after it, and we'd have to worry about it biting. Even if it were older than a puppy, it's still not a viable thing. So it hurts that this woman is dying and this is a thing she really wants and it just can't happen. Ugh.

 

If any of my old English/language arts teachers ever read any of my posts and saw how often I start sentences with conjunctions they'd retroactively fail me, I'm sure.

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4 minutes ago, fleaball said:

Apparently she's dead set on hiring a cleaning service. I'm pretty sure there's no one out there who will come in and clean and organize your house for you unless you're on Hoarders, but okay, sure.

 

This is totally a thing. I mean, I doubt it's cheap. But there are definitely companies that do actual extensive cleanouts and organization, not just routine cleaning. I know a woman who hired a company to clean out her aunt's house for her after her aunt passed and she couldn't take a couple weeks off work to do it herself.

 

I don't get why she won't let you help, but if she won't, then I'm not sure how much good it'd do to go back home? Because you'd be even more frustrated physically being there and hearing her complain about the house but not being allowed to help. So maybe if you actually want to go back, clear that with her first? 

 

The stuff with your mum and the house and the puppy and such is so sad :( It sounds kind of like she's simultaneously trying to do stuff now that she always wished she had done, and also to feel more of a sense of...purpose, or accomplishment, or just a feeling of agency. I think just being willing to listen helps. Sometimes when people are sick they talk about plans that make no sense or are obviously never going to happen. And sometimes it's necessary to tell them it's impossible but sometimes it's enough just to listen to them dream.

 

I'm simultaneously frustrated at our stupid society (for being a place where people are pressured not to acknowledge things like fibromyalgia or depression) and at your mum and dad for buying into that and letting those attitudes rob them (and their kids) of experiences. I totally get why you feel like you do. But you're the next generation and you're doing better at all of that, and ultimately that's what parents want, right? For their kids to progress beyond them? You've certainly done that in so many ways.

 

Oh and I didn't respond to this before but please don't ever feel bad about talking about the cancer stuff. It's not bothering me with reference to D's dad or whatever. I've been worried that bringing up the parallels was a bad idea. Looks like we were both worried for nothing so let's agree to stop :P 

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I think I knew places would do it for estates too. I guess I just didn't expect it in this situation. Eh. Whatever. She's prepared to spend a shit ton of money getting a bunch of stuff done. (Argh. I wonder if it's to try to make sure everything's sorted before she dies.) 

 

I should have added that I was thinking about doing it while she was still in the hospital, since I didn't know when she was getting out. Like I was planning on just showing up and doing it. I don't think they'd be mad, just "this isn't what you come home for, I'd rather spend time with you." Well great, but if you're both asleep I'm not missing anything am I? But yeah no. Unless it becomes an urgent thing, like she needs a visiting nurse or something and they can't put it off anymore. 

 

I agree. She's had nothing but time lately to reflect on her life and what she did or didn't do, so that's probably where some of this is coming from. Obviously it just hurts to listen to. She knows she can't have a puppy and has said as much, but that doesn't really change anything. 

 

Very true. I've done a shit ton that my parents never managed. Too bad I'm not having kids to pass it on to. At least I won't have to deal with her asking about it right? 

 

Haha parallel away. It doesn't bother me. The only thing that bothers me right now is seeing people die in TV shows because it hits so close to home. (And by bothers I just mean I'll start sobbing.) But talking about the situation or other people with cancer or anything is fine. It will likely be different with my mother than it was with my grandparents, but people being dead isn't something that bothers me. Because then it's over. But people who are sick and actively dying hurts because you're just waiting and constantly thinking about what it's going to be like when they're gone. So yeah. Deal. No censoring. 

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Random thought...therapy dogs are a thing. Sometimes at MGH a lady would come around to the chemo waiting room with a dog. Maybe you can see if they have that where she goes? I've read articles about programs that give people a dog to sit with them when they're getting the chemo. And I think some places do home visits?

 

Found this list online: http://www.caringcanines.org/links.html

 

I know it's not the same, but like...better than nothing maybe? And this is actually feasible. Plus they have those programs for a reason - they really do cheer people up!

 

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5 hours ago, Severine said:

Random thought...therapy dogs are a thing. Sometimes at MGH a lady would come around to the chemo waiting room with a dog. Maybe you can see if they have that where she goes? I've read articles about programs that give people a dog to sit with them when they're getting the chemo. And I think some places do home visits?

 

Found this list online: http://www.caringcanines.org/links.html

 

I know it's not the same, but like...better than nothing maybe? And this is actually feasible. Plus they have those programs for a reason - they really do cheer people up!

 

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I wonder if that's only on certain days. She's been on Mondays and Thursdays and hasn't mentioned them before. I know when I was in the hospital here two women came around with dogs (and I was SO EXCITED in my feverish delirium) but only one night. Apparently that was the designated night/time. When I find out when her next chemo appointment is maybe I'll call the hospital and see if I can get details about it. (She's at MGH too.) I'll do some googling too and check out those links you found. Maybe I surprise her some day. 

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Called my mother nearly 3 hours ago and left a message that hasn't been returned. There are perfectly rational explanations for this. She could be asleep. Her phone might be charging in the other room. She may not want to talk right now. 

 

And yet, in the back of my mind I can't help but wonder if something's wrong. 

 

I'm sure it's not, because my father should be home by now and if something were wrong he'd let me know. 

 

Ugh.

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Update: my father just called for help with his phone, and he's at home, so the sky is not falling. Although I mentioned having called her and he mumbled something about having to come home and then "nothing, I'll tell you later." So ugh, that sounds like fun. 

 

Youtube is playing the 2014 Tonys performance of One Day More and ugh, do not want.

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If you're worried, call your dad or brother. But also maybe try to practice assuming that everything is okay unless you hear otherwise. Sooner or later there is going to be a call that something bad happened - you know that. And brains try to keep us safe by being prepared for danger, so your brain won't stop trying to see it coming. But a bad news phone call isn't like a sudden tiger attack. No amount of preparedness or imagining it beforehand is going to alter the outcome.

 

Maybe come up with a mini meditation or affirmation to say when you're worried about this? I used to do that when I was waiting for an MRI that might have given me scary news. It wasn't magic but it helped a little.

 

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1 minute ago, fleaball said:

Update: my father just called for help with his phone, and he's at home, so the sky is not falling. Although I mentioned having called her and he mumbled something about having to come home and then "nothing, I'll tell you later." So ugh, that sounds like fun. 

 

Youtube is playing the 2014 Tonys performance of One Day More and ugh, do not want.

 

I forget who your favourite Valjean is, but I seem to remember it's not Colm Wilkinson because you're some kind of monster.

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3 minutes ago, Severine said:

If you're worried, call your dad or brother. But also maybe try to practice assuming that everything is okay unless you hear otherwise. Sooner or later there is going to be a call that something bad happened - you know that. And brains try to keep us safe by being prepared for danger, so your brain won't stop trying to see it coming. But a bad news phone call isn't like a sudden tiger attack. No amount of preparedness or imagining it beforehand is going to alter the outcome.

 

Maybe come up with a mini meditation or affirmation to say when you're worried about this? I used to do that when I was waiting for an MRI that might have given me scary news. It wasn't magic but it helped a little.

 

4eBFz3H.gif

It was weird. I wasn't like, super super worried. But I think for the first time it occurred to me that there may be a time when a situation like this is cause for worry? Given the timing though, my brother would either be asleep with his phone on silent or at work, so that would be useless. And my father is likely to overreact so it's more stressful for everyone involved if I were to call and say "she's not answering her phone, is everything okay?" if I didn't already know he was home. 

 

I'll work on something though. For sure. And that cat is adorable as fuck.

 

3 minutes ago, Severine said:

 

I forget who your favourite Valjean is, but I seem to remember it's not Colm Wilkinson because you're some kind of monster.

I think he's my favorite by default, unfortunately. My mother played the 10th anniversary concert so often when I was a kid that I'm pretty much ruined for anyone else. Although when I saw it in London Javert was incredible. 

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Texted my mother a photo of the food I cooked, no response. Called her again, no response. I sincerely hope she's not sick again. The Saturday I was home she spent most of the day sleeping and didn't eat anything and my father was pissed, so I'm wondering if that's what he was pissed about today too, and if he was trying to say he came home early because she wasn't answering him either. (He's done it before.)

 

She's got an appointment with her oncologist tomorrow to discuss the plan going forward since the doctor won't be around, so I should hear from one or both of them anyway. If it gets into the afternoon and I haven't heard, I'll call. I'm less worried now and more just... done? Like "ugh, this again." Let me off this ride.

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5 minutes ago, Owlet said:

Communication is not a strong point for your parents huh... I do not envy you and all the second-guessing. That sounds like a plausible explanation though (sleep). Hope tomorrow brings more clarity. 

It's really fucking not. They're really bad at it. My father is especially bad when things are bad. Which is understandable but also obnoxious because that's when you need clear responses the most. Ugh. 

 

Get a cat and I'll come help you take care of it forever. :)

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20 minutes ago, fleaball said:

It's really fucking not. They're really bad at it. My father is especially bad when things are bad. Which is understandable but also obnoxious because that's when you need clear responses the most. Ugh. 

 

Get a cat and I'll come help you take care of it forever. :)

Unrelated but cool: my brother just moved house and his cat went missing. I definitely got really upset about that. Good news is he came back a few days later and I got a message straight away (near midnight last night) so I could relax.

 

The best part? My brother rigged up a webcam connected to the cat flap so he would get an alert and a photo the second the cat came in XD 

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