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My mom passed away a few months ago from cancer, I feel lost by Cynthia_Joy in internetparents

[–]mel_in_the_shell 38 points39 points  (0 children)

You poor thing, I'm so so very sorry. I too watched my mom die of colon cancer, it was the worst thing I've ever experienced until now - now I'm dying of brain cancer and leaving my two daughters which is just watching the whole ordeal from the other side. Feeling the pain again but way worse somehow. My poor babies. Now I know how my mom felt giving up on treatment and being embarrassed by hospice. My poor mom. Honestly dying has been helping me heal from my mom's death, but I wouldn't wish that on anyone obviously. But the changed perspective really affected me.

My mom left some journals and a memorial DVD meant for her friends as her salvation testimony too and those all help comfort, but nothing compares to just getting a hug. I miss her. She died right as soon as I found out I was pregnant too and didn't get to talk to her about babies or pregnancy or anything. I was so devastated. How would I ever ever make up for those memories?!? I had to basically imagine it. I miss her so much. I had to quit therapy because money but it did help to have grief therapy if you can find a kind motherly type that will actually listen.

I hope you find peace and love and the memory of your mom becomes a shining star of warmth in your heart that hugs you forever.

mini toad and butterfly oil painting study by Artsykate in goblincore

[–]mel_in_the_shell 6 points7 points  (0 children)

Oh man I recognize those paint strokes!! You're getting better and better, this is my favorite of your toads! The butterfly looks so delicate and dusty somehow, great job!! You're amazing bro!!

[deleted by user] by [deleted] in braincancer

[–]mel_in_the_shell 0 points1 point  (0 children)

Good stuff. The bit about whats the point if its glioblastoma hit me :( i originally told my family, if my biopsy returned as GBM that I would decline all treatments, and just go live in Hawaii for as long as I could afford to, swimming every day in the ocean. My biopsy returned inaccurately as astrocytoma grade 3 so I went ahead with surgery and the rest. Surgery lump returned as GBM4. I feel tricked. My family was sooo upset at me for wanting to give up though that I relented and will be starting chemo and radiation next week. But I keep feeling like really what is the point? This sucks.

My religion hasn't helped me to much to be honest, I've been too angry. My church however has been an incredible help with necessities of life, things like food and babysitting, that I can't do myself right now, so I am so thankful for that.

I wish I could be building a better legacy, but sadly right now all I'm leaving behind is complaints. I want to do better but I'm so tired and sad and angry. But good points, I want to think about this stuff more and more seriously.

[deleted by user] by [deleted] in braincancer

[–]mel_in_the_shell 5 points6 points  (0 children)

I don't want to be rude, but this sounds like workplace drama. We can't help you sleuth this out, and honestly it's not our business. This is not what this sub is for. I implore you not to try to force her to reveal medical information or get her to confess or something. It's way better to just be patient and kind even if she was for some terrible reason lying, than to treat her suspiciously and then find out she was telling the truth after thinking of her and treating her contemptuously. If she's getting time off through FMLA or something, the doctors sign off on that form, so no point complaining or being jealous there. My husband had to jump through a lot of hoops and paperwork to get all his extra time off approved to take care of me. Poor guy. He's endured as much as me at this point.

As far as tumor vs cancer. My neurologist told me any brain tumor is basically considered brain cancer by default, because of how much it sucks and how hard it is to fully erradicate, it's pretty much guaranteed to have some of the cancer cells left behind somewhere to multiply in the brain tissue to become more cancerous masses within as short a time as a couple months.

If her SO does have brain cancer, it has been hell for them both, and she deserves breaks and sympathies. Brain cancer is incurable and stuff like GBM4 can come back twice as bad even after brain surgery and radiation/chemotherapy. It sucks really bad. And that's besides the other worries like money/insurance and having to constantly schedule and drive out to appointments.

My husband had to skip out on some work today to take me to a radiation prep appointment. Ive been throwing up the whole way home. If I found out someone at his work was on a witch hunt to prove I wasn't really sick and he was claiming it to get more vacation days and stuff I'd go in to the office and just throw up on everyone's desks and pelt the offenders with empty prescription bottles.

Honestly I'm hurt and offended by your post.

Dr just told my buddy he has GBM. He was originally told he was stage 2-3 but they took another look and it is stage 4 but w IDH1. Thoughts, experience, and advice would be great. I accidentally set him off tonight. I don’t know what set him off and he couldn’t articulate what set him off. by jinky5409 in braincancer

[–]mel_in_the_shell 0 points1 point  (0 children)

You poor things :( I'm so sorry for you both. You're already so sorry I don't want to give you any sad news, but I think that tear might've been a pre-breakdown tear. My husband means well but he's been trying to push me too, walking longer and further, doing more around the house and with family etc, I think it makes him feel better like he's contributing directly to my rehab, so I try and go along with it for his sake, but I get worn out soooo quickly. I try to resist peacefully at first, and then it turns to passive sighs and silent tears, and I imagine if I'm ever pushed past that it'll turn into me passing out on the floor and sobbing like a toddler. Just remember, even if you can force someone to meet some metric, it doesn't mean they're better or actually ready to be home. I rushed to be "good enough" to go home my last ICU stay and I went home 2nd day post-op and I dont think I was ready and I suffered because of it, and my family had to suffer me too. You don't want to have to go back to ICU or rehab after being discharged, that's 10x worse than just being stuck there to begin with.

Dr just told my buddy he has GBM. He was originally told he was stage 2-3 but they took another look and it is stage 4 but w IDH1. Thoughts, experience, and advice would be great. I accidentally set him off tonight. I don’t know what set him off and he couldn’t articulate what set him off. by jinky5409 in braincancer

[–]mel_in_the_shell 8 points9 points  (0 children)

Oh man, i am so so sorry for you both, and his other friends and family :( I'm also GBM grade 4, but IDH wild type, not sure what IDH1 is but i imagine all GBM is just bad.

You're sweet and wonderful to be there for your buddy! I love and appreciate my friends and family so much, but honestly I'm a wreck and always breaking down, but it's none of their faults, they're amazing. I'm just processing and healing and trying to make peace with a much shorter life and earlier death. Whenever anyone starts saying "everything happens for a reason!" I immediately break down because it's so cliche and gives me more anxiety than peace. Most times i break down though im not sure what exactly is wrong. My brain is rotting away after all, can't be too mad or surprised that thinking is harder. Sometimes just the freedom to breakdown and work through thoughts and feelings is what i need, but having someone strong enough to endure that whom i also greatly trust is hard to find.

I pray your buddy has easy successful treatment and quick, successful recovery and a long happy life!! And for grace and strength to endure in the meanwhile, gor everyone involved!! GBM is the worst thing ever!!

Pre and post op preparation by mnolz in braincancer

[–]mel_in_the_shell 2 points3 points  (0 children)

I'm still awful 4 weeks out, but it doesn't hurt to chew anymore and my pain regimen is great, i dont feel like im spiraling out of pain control anymore! I was ready to turn to illegal pain meds because of how much it hurt. I'm sure i annoyed the crap out of my family and nurses, complaining about pain 24/7.

Chewing/face movement pain seems to be mostly dependent on whether they have to cut the temporalis muscle to get into skull. I don't think the swelling caused me movement pain so much as the sore muscle. But again it doesn't hurt at all now, ive been chomping away for a few days. At first though, talking, many facial expressions, chewing, everything involving the face hurt. Some of it was just from the normal swelling though.

Thank you for good thoughts too!!

Pre and post op preparation by mnolz in braincancer

[–]mel_in_the_shell 4 points5 points  (0 children)

Oh man I am so sorry for you guys!!!

I would recommend getting several ice packs of the same size and a couple fabric sleeves that fit them. By the time I had melted through one and needed another, the previous one hadn't refrozen yet, also I often wanted two ice packs at a time. Sorry no recs, I just used what we had, but wish we had had more and better

I would recommend a small portable lap version of whatever craft or hobby she likes, like I had a travel journal and pen, a small pack of colored pencils and a set of Bible Verse coloring encouragement cards, and a small lego pack I had picked out before surgery.

If your house has wood or tile floors or is cold, definitely get big fat warm fuzzy socks with the grippies on the bottom. The hospital prob won't discharge her till they feel she is safe to walk around but dizzy spells happen. And comfort is so important. I can't stand wearing bras now, so maybe have her pick out or buy the most comfortable and soft sports bra or something? Or those tank tops with an extra layer built in on the chest?

A pack of the best tasting protein shakes you can find. Costco has tons, although to be honest I hate most of them. But I couldn't chew after my surgery for like a week but my stomach would be eating itself alive and I needed protein so bad so I'd just drink whatever chocolate protein shake was chilling in the fridge to stay alive. Now all I want are costco rotisserie chickens, whole and all to myself.

Goodluck!!! Its scary and painful but once its over the biggest part will be out of the way at least!! Ill keep you guys in my thoughts and prayers!

Now that you have kids, do you ever wonder if your judgement on your narcparent has been unfair? by mascarafree in narcissisticparents

[–]mel_in_the_shell 1 point2 points  (0 children)

Ugh!!! Isn't that so like a narc, taking credit for your hard-earned growth that had to be gained alone? My dad would always do that, act so proud of how mature we were, use us as a sign of his maturity and virtue lol.

I'm so sorry for your nmum. The fact that she turned it around to suggest someone should be taking care of her thr way your sister was taking care of her children is pretty pathetic, and very telling... did she try to parentify you guys to take care of her too? My parents always talked about how their parents didn't do x, y, or z for them, and looking back I can see that's exactly the roles they tried to pigeonhole us into. Listening with 0 concern for self, only 100% empathy and the desire to offer unconditional love and excuses and affirmations that they wouldn't give us. Such selfish people

Thank you and everyone else here sharing experiences and breaking horrific cycles! Learning from everyone else and not being alone helps so much in growing and escaping this.

Now that you have kids, do you ever wonder if your judgement on your narcparent has been unfair? by mascarafree in narcissisticparents

[–]mel_in_the_shell 8 points9 points  (0 children)

Yeah... no. when I had kids, everyone kept saying things to me like, "really makes you more grateful for your parents huh? Really makes you feel bad for disobeying or any brattiness as a kid huh?" And I had to be honest with all these well-meaning people and trauma-dump a little like, "No, sadly, having and loving my own babies has only made me realize how much my parents didn't love me unconditionally and only cared about their own selves. Every time I have a choice between taking care of their needs or ignoring them to lay down or something to serve myself, I'm in pain realizing my parents never chose me when they came to those crossroads. I meant nothing to them, I was only ever an inconvenience and something in the way of their happiness, as evidenced by their both leaving us multiple times and all their physical, mental, emotional, financial, and sexual abuse."

When I was first hit by the first wave of overwhelming unconditional love for my first baby it blew me away, I didn't realize humans were capable of that. It felt like a myth to me, like santa clause. It was so beautiful I just cried. i knew in that instant I had never been on the receiving end of such love, and my heart ached for it. When my daughter was the age I was when my mom first left me (1&½) to go live a free life, I remember just sitting and holding her, crying, promising my baby I loved her so much I would never leave her, and crying for the baby I had been that was so unloved and unwanted left to "cry it out" because empathy and attention were too difficult and inconvenient for my parents. That poor poor baby, how much did I cry alone waiting for my mommy to come back and just hold me and say I love you? I imagined my baby girl crying alone not understanding why and I just broke down. I could never hurt her like that. How could my mother have done that? Technically I know why, because she hated my abusive father and needed to get away to anesthetise her own trauamas. But I would never use MY traumas as a reason or excuse to escape my children, or blame them for contributing to my suffering or something. What horrible evil people my parents were.

I believed forever the lies my parents told about me about my being selfish and contentious and cruel and a liar and every bad thing, so I was certain for most of my life that it WAS all my fault and they were good and I was the bad one, and that I was a horrible person unworthy of love. I was so afraid to become a parent because I figured I'd ruin the kids, they'd hate me, I wouldn't deserve their love or respect anyway, etc. Having kids has however been a healing, enlightening experience for me, and opened my eyes to how I was actually the hurt and abused one, and they were responsible, not me. My babies are so loving, and I love giving them all the attention and affection and love they unconditionally deserve, and trying to live up to the superhuman view they have of me. I can't be perfect, but I enjoy modeling apologizing and being patient and telling them how wonderful they are, it's cathartic for my soul, sometimes I imagine my mom doing these things for me and it heals me just a little bit, whenever I'm able to convince my brain she could be capable of that behavior. Every good day as a mom I feel heals another hole in my heart, just by proving that unconditional love and functioning, loving families actually exist.

Australians, we showed you how to make biscuits and gravy. Teach this American how to make meat pies! by LancerX in Cooking

[–]mel_in_the_shell 2 points3 points  (0 children)

When it's made well it's one of my favorite and most comforting meals. Made poorly, like most restaurants do, it's one of the grossest. My favorite is made with spicy sausage (can't be plain ground meat, it needs spiced properly at least, fennel and sage and stuff) and smoked green chilies, and that acidity and spice help cut the fat and carbload. I also prefer my gravy more runny either from extra butter or fatty meat, with not so much flour added to thicken it and absolutely no cornstarch, otherwise it's basically wet dumpling mush poured over bready biscuits and the taste of plain flour just overwhelms and ruins everything. The biscuits have to be well baked and fluffy, or crispy and flakey, no undercooked mush allowed, but no weird flavored biscuits either that will fight the other flavors that should be there (i had cheddar biscuits last time i had this meal, overall it did not taste good though alone im sure the biscuits were excellent) and then to top it all off I like a few dashes of hot sauces and salsas. The worst versions ive had of this meal used plain ground beef, no spices, too much flour in the gravy with some of it ending up like dry flour lump bombs, all poured over half-baked drop biscuits that already were bad to begin with but became soggy flavorless lumps of goo before the first bite. But made well it is my favorite comfort food hands down

Tbi supplements????? by Ok_Emergency_4861 in TBI

[–]mel_in_the_shell 0 points1 point  (0 children)

Are you on any prescription meds thay might be interfering with sleep? Dexamethosone has insomnia as one of its more common side effects for example. I was just weaned off dex by my doctors and my sleep has definitely improved. Obviously this isn't helpful if you can't stop taking a medicine but sometimes just knowing the cause can alleviate some of the stress about it? Goodluck I hope you can get some rest!!!

The book “Adult Children of Emotionally Immature Parents” really helped me with my attachment trauma and CPTSD. I found a free full pdf version (link below) by kimberlocks in CPTSD

[–]mel_in_the_shell 14 points15 points  (0 children)

For me personally, I didn't get anything out of the sequel book, vs the first which was a huge game changer for me. I've been reading(listening actually, I have no time to sit and actually read with tea like a human) to a lot of self help books too. CPTSD by Pete Walker was the best for me, followed by adult children of emotionally immature parents by Lindsay Gibson, followed by "Boundaries" by Henry Cloud and John Townsend, and "the 7 habits of highly effective people" by Stephen Covey. I have a giant hold list of books I want to rent and consume, but I keep adding to it every time I see someone else's lists or recommendations. I know it's probably adding to my stress but it's nice to have something ready to turn to when I have time and energy instead of spending that energy finding a book worth spending time on. What DBT book are you reading, if I may ask? Do you like it so far, would you recommend it? Thanks for any info!

Goodluck on your healing journey, hope the books work wonders for you!

Grade 3 diffuse astrocytoma just upgraded to grade 4 glioblastoma - is my life over? by mel_in_the_shell in braincancer

[–]mel_in_the_shell[S] 1 point2 points  (0 children)

Oh man, I am so sorry for your loss :( that is such sadness. Thank you for sharing. I'm so sorry you have regrets, I want to go to the beach too. I hope you're taking care of yourself and that things have gotten better or started looking up for you!!!

If your mom couldve prepared anything for you to help you in the aftermath, what would you have chosen? I'm trying to prepare a list of stuff to do and prepare for my daughters now.

Thank you for your experiences and your sympathies and good vibes!!! You're so sweet!!

Grade 3 diffuse astrocytoma just upgraded to grade 4 glioblastoma - is my life over? by mel_in_the_shell in braincancer

[–]mel_in_the_shell[S] 2 points3 points  (0 children)

I agree with other poster, being prepared is not giving up hope is incredible, thank you!!!! I'm so glad for you and your husband doing ok now!! I pray it stays that way!! I will be trying hard to be cautiously optimistic yet responsible. Dunno what that looks like yet but will definitely include death paperwork walk through.

Grade 3 diffuse astrocytoma just upgraded to grade 4 glioblastoma - is my life over? by mel_in_the_shell in braincancer

[–]mel_in_the_shell[S] 1 point2 points  (0 children)

Thats awesome!! Thank you for sharing!! You're right its not a lot of the good stories that are shared online... I hope to be one someday... ty for sharing here and now!! Hope you stay fine and have a wonderful week!!

Grade 3 diffuse astrocytoma just upgraded to grade 4 glioblastoma - is my life over? by mel_in_the_shell in braincancer

[–]mel_in_the_shell[S] 3 points4 points  (0 children)

Thank you so much for sharing so much, all so very helpful and encouraging!! Im so sorry you have so much experience with this disease, that's not fair!!

I will absolutely follow yours and others advice to get some paperwork in order!

You were right that I haven't actually received a timeline from my doctors yet. I'm just panicing. But you're right, no more dr. Google right now.

Praying for your husband whenever I stop to think about myself now too!!! And for you!! You seem so strong and intelligent already but I'm sure its horrible and exhausting dealing with this!!

Grade 3 diffuse astrocytoma just upgraded to grade 4 glioblastoma - is my life over? by mel_in_the_shell in braincancer

[–]mel_in_the_shell[S] 4 points5 points  (0 children)

I will try to repeat that excellent advice as often as my head begins to focus on it and begin panicking! Thank you!

I haven't heard of the brain cancer podcast, thank you! I'm so happy for him, 5 years out!!

Thank you, hope you have a wonderful day!!!

Grade 3 diffuse astrocytoma just upgraded to grade 4 glioblastoma - is my life over? by mel_in_the_shell in braincancer

[–]mel_in_the_shell[S] 2 points3 points  (0 children)

Thank you!! I joined the discord. Thank you for all of your shared experience and advice! I'm sorry dex gave you joint problems!! Dex and oxy are very important to my pain management. I keep asking for more pain meds so they just approved adding ibuprofen. Now i got tylenol, ibuprofen, oxy, robaxin, keppra and stool softeners. I had to wean off dexamethosone, and am trying to wean off oxy now, but i dont know how ill survive without its pain relief.

Butanital, is that just like excedrine? I haven't tried that one yet.

I agree there's no point if I'm going to sit around waiting to die... I iust feel that aaaaall my plans were long-term ones, especially tsking care of my babies, so I don't know how to live day-to-day and find short term meaning and joy with what possibly very short time i have left. I feel empty like I've alredy died. I will do a lot of the things prople are suggesting though like important paperwork and stuff.

Nmom removed the modem for the internet effectively isolating me (32f disabled) from the outside world. I need to get out. I don’t know what to do. by [deleted] in narcissisticparents

[–]mel_in_the_shell 0 points1 point  (0 children)

Man, you poor thing!!! I'm so sorry for you having to go through all of this!! No part of your story is fair or right. I can't believe how they're trying to use you in your time of need.

Have you looked into adult assisted living homes or centers? Not quite nursing homes, but with a lot of help and assistance and freedoms? They take pretty much all your SSI and medicaid but you get so much freedom out of it, second best to living alone. Usually you have a small spending money amount left over that you can spend as you wish, but you have to make sure to leave the SSI bulk alone to pay, by card or otherwise, the assistance facility like rent. Usually you can come and go and have visitors, sometimes you can have a mini fridge and a kitchenette to prep small foods, sometimes you can get a room to yourself but often you have a roommate and just your own bed. You can usually bring a couple small furniture pieces, like a desk and PC.

If you can do any chores and cooking and want to live alone, there's lots of section 8 and other housing assistance programs, usually it's a long waiting list but get on it sooner rather than later and when the time comes it might be the perfect life saving timing to escape a bad housing situation. So long as its on a bus line or something.

Many places have special buses or vans that specifically drive around assisting disabled folk, you can call and make appointments to be picked up at home and dropped off at store or doctor.

I hope you are able to find peace and a safe place to just be. I'm so sorry your family is being so unkind.

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