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Let's be honest *no replies please* *TW*

mytwistedsoul July 1st, 2020

I created this space for me to be able to write - whatever is on my mind that I may not want replies too. It isn't that I don't appreciate the replies - it's that alot of times I am really uncomfortable with the support. Sometimes it's the well meaning words get twisted around in my head - sometimes it the well meaning suggestions that are turned around and taking the wrong way. Sometimes - it's fear - rejection - judgement - fear of offending someone with what I say. Even now - the creation of this is - causing some anxiety - and I feel the edge of a panic attack - so let's take a pause and a few deep breaths

I often don't feel as though I deserve support. I waste peoples time and feel like an inconvenience. With that in mind - I've been slowly going quiet

The TW is because - well - lets be honest - if I'm going to put some of whats in my head and and I don't want replies - you dear gentle reader should be warned at least. Because there are times my head is a scary place -

I'll say I'm sorry in advance because sometimes I do swear - I try not to and I try to remember replace some letters - but well sometimes I dont care and sometimes I forget. Idk - I suppose I should say sorry for my sense of humor in advance too - because sometimes it's alittle dark or alittle inappropriate

So - let's post and panic over this now shall we?

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mytwistedsoul OP May 22nd, 2023

My phone makes me nervous. It's become a bearer of bad tidings. My father's in the hospital again

They did his chemo port. He's been having chemo every day and did a radiation treatment. Friday he started having swelling which was chalked up to the chemo. But it kept getting worse. Saturday he was also weaker. Sunday trouble breathing was added. They did an MRI on Sunday and he has SVC syndrome. They were going to do an emergency radiation treatment but then decided against it. They're not sure if it's caused by the tumor at his aorta or if it's a clot. The doctors are supposed to look at it again today

We had text on Friday - he never said a word. I was told not to come. He doesn't want to see anyone. It feels wrong not to be there. But yet I don't really want to go anyway. Which sounds horrible I guess. But idk if I should follow his wishes or do what my heart tells me

I'm really tired of hearing that death is a part of life. Believe me I know - we all do

mytwistedsoul OP May 27th, 2023

What's on your mind? Everything and nothing

My father had his surgery. They did what's called a pericardial window. The fluid around his heart drains into his lungs and then drains externally. He's on blood thinners in case it was a clot and they did emergency radiation on the tumor that's at his aorta *type type delete* :/

I haven't seen him. I haven't talked or texted with him. I feel like the world's sh*ttiest person because I haven't visited him. He said he doesn't want to see me. This has triggered alot of things - again. Reminders how I was an unwanted inconvenience. I want to visit and I don't want to. There's a lot of fears. Fear of disobeying. Fear of seeing him in the condition he's in. Fears of never seeing him again. Sadness and anger. Anger that he's dying. Leaving again after coming back into our lives. Abandonment issues

It's smothering. Claustrophobic. And we can't breathe

mytwistedsoul OP May 31st, 2023

How many things can a soul carry? I feel as though I have so many things weighing on my soul at the moment. We're all haunted. By the choices we've made and the choices we have yet to make. If I trust my instincts and the alarms sounding - they all say that someone isn't a safe person. What's the right thing to do?

mytwistedsoul OP June 6th, 2023

A little shaky today. Could be the pot of coffee I had or the dozens of different emotions circling. There's hurt in so many ways. I saw my father over the weekend. He's not good at all. There was random breakdowns before seeing him. On the way back home and last night it was worse. Today - just the shakiness and some anger. Everything else is just buffered

It's all happening so quick. He's lost so much weight. His eyes so sunken in. At times he seemed peaceful - just enjoying the day. We sat in the yard and talked. Watched the dogs play. Enjoyed the sun

It's hard to hard to fit the face from the past to the face of now. I never imagined that what's happening would affect things - me the way it is

He hasn't been telling me everything. But his wife tells me more. It's over ten radiation treatments he needs. He told me just three. He told me about the spot in his skull bone but she told me about the other two spots in his brain. He supposed to have a neuro knife thing done. On those two spots. I have to Google it because I'm not too sure exactly. I know it involves a halo to keep his head from moving but tbh seeing him in the condition he's in. Idk. I don't know how much longer he's going to be around. I know I'm not remembering everything right at the moment

People keep telling me to find as much support as I can for myself but idk

1 reply
mytwistedsoul OP June 6th, 2023

* Gamma knife. A neurologist uses it. Thought it didn't sound right

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mytwistedsoul OP June 15th, 2023

My father text me today. We text every couple of days. We talked a few times but he's only good for a few minutes before he starts to lose his voice. I wish I would have kept a few voicemails. They weren't anything special usually but it's hard to remember what he sounded like

He goes on Friday to have this gamma knife thing done. He's had chemo everyday this week. Friday is an all day thing. There's so much involved with it - just getting set up. They knock him out for alittle to put this box on his head to mark the proper location and to hold his head in place. They told him it's going to be bad. He told me he hopes he doesn't wake up when they put him under. He signs the DNR paper. He doesn't have hope anymore. He told me that himself. What can I say to that when I don't have any hope for anything myself? But if he gives up - then he's done ya know? What do I tell him? Don't quit? Don't give up? You have to fight. Don't leave?

There was random breakdowns then nothing - attention was focused somewhere else and it's like I forget about him. Today the emotions kicked in for alittle. I try to sit with them but it doesn't last long. What's the point in crying? It doesn't get you any where

I got another lesson again in just keeping quiet here. You can ask all the questions you want but any answers you get are vague - if they come at all. People throw in the triangulation word and I shut up. I'm not sure how asking questions about something that you're involved in is triangulation - I guess because there's other people involved. Idk. It feels like you can't talk to anyone about anything. So relearn how to mask and smile and nod. And tuck it away along with everything el

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mytwistedsoul OP June 23rd, 2023

Went to visit my father last Sunday. Fathers day. It felt important to see him on that day. He had that gamma knife thing on Friday. She text me Friday night. Said they zapped 2 nasties in his brain and didn't find anymore. He had a h*ll of a headache. Saturday he couldn't swallow anything. Sunday we visited. Saw him about 15 minutes. He's not doing good at all. Monday he got a couple more prescriptions to help the pain. Radiation esophagitis. Tuesday they gave him IV for hydration. Wednesday they did a blood transfusion because his hemoglobin? was so low. Since then he's been eating very little. He so thin. There's nothing left to him. He's supposed to start chemo again next week but they're not sure if he's strong enough for it

God there's so much I want to say here -ya know? But I just don't have the energy to type the words and it's pointless. It would be too long anyway. I'm trying to keep it together but my grip is slipping. I have a little hiding because he thinks this is his fault

mytwistedsoul OP July 12th, 2023

It's always so hard to know what the right thing to do is. There's always a war

My father is just getting worse. Weaker and weaker. Idk if it's the treatments or the cancer. He's supposed to go for a pet scan on Friday. He was supposed to have it done last week but was too sick

The dog's getting worse. She still has good days but she paces alot. Her hind end is weaker.It makes the anxiety worse. But it's depressing to know that there's nothing that can be done to make her better. She just old

So I'm running headlong into a wall. I can see it coming and there's nothing I can do to keep from hitting it

I've been noticing things. Things here. And it's pretty sad to see

I'm dissociated alot because I don't want to think about things. I don't want to feel things. They pop up and it's big . It's all so much bigger than I am. So much bigger than all of us. Some days I'm afraid it's going to swallow me whole

mytwistedsoul OP July 21st, 2023

Just a vent.... Not sure why I'm bothering to write here. The illusion of being heard. The illusion of "you are not alone" I guess
I'm angry and disappointed and frustrated because I don't feel as though I've been listened to by certain parties. They just do what they want anyway. The feedback is a sham. I think they already have their minds made up but in the spirit of diplomacy they pretend take things into consideration. People say they understand but if they truly did do you think they would still force the issue? If we truly mattered would there be constant reminders of how expendable we are? It doesn't even matter does it? I lie to myself and say it doesn't but it was important. The consistency was important. Maybe not to everyone but it was to me. Don't we figure in somewhere? As part of a community shouldn't we all?

mytwistedsoul OP July 31st, 2023

His pet scan showed that the tumors aren't actively growing. That's a good thing. He still has to do chemo three days a week every other week - if I understood correctly. He has to go in every now and again when he's really exhausted and he gets a transfusion because he gets anemic and dehydrated. We visited two weeks ago I think. It feels longer. Time has been weird. It takes a few days to bounce back after a visit

His wife is very welcoming - the problem is she's uncovering lies he told and I'm uncovering lies he told me. She asks questions and I'm unable to answer them. There's a number of reasons why. I don't ask any. I used to want to know things - I don't anymore

I keep a secret from him. I'm not sure why. I guess it's because it doesn't matter? I didn't want it in the first place - I certainly didn't expect it. Was suspicious of it. But tbh - the idea grew and it could have been a life changing moment. We started toying with different ideas. Turns out it's worthless but he doesn't know. Having it could have changed everything but not having it doesn't change anything - so it it what it is

I still get self conscious when one of the others comes here. It doesn't happen often. I shouldn't feel that way - it's not embarrassment - just self conscious

Thought about drinking a few times - more than a few actually - but I haven't. Went a far as to pour a drink and then poured it out. Kudos to me lol

Went to the beach for a few days a couple weeks ago after a visit with my father - that's a post for another time maybe because this is getting too long



mytwistedsoul OP August 2nd, 2023

Time is fluid. Words are hard. There's a riot of thoughts - things I want to say but I can't get them to work together. It makes me feel like an idiot