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Sister is in hospice, I’m not going to live without her

HomeForumsTough TimesSister is in hospice, I’m not going to live without her

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  • #438987
    Lulu
    Participant

    My 14-year-old sister got put into hospice a few weeks ago. She got diagnosed with stage 3 osteosarcoma in May of 2023 and has spent the last year and a few months in treatment for chemotherapy, radiation, multiple surgeries, and the latest – TCELL therapy, our last resort.

    Nothing worked. The cancer spread and kept multiplying, and now it’s stage 4. We tried everything: we flew to different places and traveled back and forth with so much time, money, and treatment. She’s treated every single moment she’s had with grace.

    Despite being four years younger than me, she’s always been way more mature than me. I always joked that our ages were swapped, that she should’ve been the oldest and me younger than her. She’s the second oldest out of the five of us; I’m the oldest at 18, and then there’s her, my 12-year-old sister, my about-to-be 10-year-old brother, my seven-year-old sister, and my mom and aunt. My siblings all love (and fear her,) lol. She’s always been a leader, not a follower, and she takes care of my siblings with a gentle but iron fist.

    She’s an artist; she has so much artwork in my room. She’s a perfectionist. She spent hours practicing her curves until it was perfect, and threw away so many art pieces and drawings because they “weren’t good enough.” She bounced between wanting to be a backup dancer, a model, and a fashion designer. She didn’t care for college though: she wanted to go into a good art school and become a commissioner.

    She was a straight-A student throughout middle school, in the National Junior Honor Society, and tested advanced. She was always surrounded by her friends, always huddled around and adored. She had so many secret admirers. She loves fashion and good food, she always kept a close eye on her health and exercised whenever she could. She kept her room clean and her clothes neat, always studied, and did her homework without anyone having to ask.

    She’s always been quiet. She’s so quiet that she’s able to sneak away whenever my mother asks her to do chores without being noticed. She doesn’t complain; she always makes the best of things. Despite this, she always spoke her mind. She could have a mean streak when she wanted.

    She has a billion squishmellows she collected over the past year, all with names and backstories and she remembers each and everyone of them. Most of them came from her Make-a-Wish shopping spread back in summer of 2023, some from the hospital, a lot my mom ordered and some from me as I went to different stores.

    She is very funny and creative. We spend hours cracking jokes and entertaining ourselves. We watch gaming YouTubers, cooking videos, anime, and anything that catches our eye. We’ve done this for as long as I can remember. She’s the person I’ve spent most of my time with.

    We used to fight a lot when we were kids. Over tribal, small things that never really mattered. Once I reached 6th grade and her 2nd, though, our dynamic changed, and she became my best friend. Nothing had changed since. She’s the first person I look to when I find something funny and she never hesitates to tell me when I’m being stupid.

    Before the chemotherapy, she loved sweets. She ate an entire box of toaster strudels in one sitting once and I got angry with her while she just laughed. She HATES red meat; the only types of meat she’ll eat are tacos, spaghetti, and fried/baked chicken. Other than that, she’s very picky about her food. She’s always had aspirations of being vegan or vegetarian.

    Above all else, though, she’s always been my best friend. When I went to the psych ward for two weeks, she painted art pieces for me and hung them in my room for me to see when I came back. I was always the writer, and she was the artist. I always wanted to make a comic book, but she never got into the idea because drawing is significantly harder than writing. Still, she’s drawn a few comic book characters I made and gave them to me. She played practical jokes on me; she put hot sauce in my iced tea, gave me mayonnaise, and told me it was yogurt, and jump scared me a lot.  Despite this, she has jokingly admitted that I am not her favorite sibling; my seven-year-old sister is, and for that, I can’t blame her, lol. I’m unreliable and clumsy at times, not the mention a crybaby. She never cared to cry around others, even while going through treatment. She cried when she thought no one could hear her in her room, late at night.

    She’s always been the glue that holds our family together. She kept things clean, even when I was lazy, and was always thoughtful of my mother.

    I’m sitting in the hospital here with her and my mom and siblings. I don’t know how much time we have left together, but I know it’s not long. I don’t think I’m going to be able to live without her. I’m considering dropping out of school, running away, and starting a new life. I’m also considering just going when she goes. I still feel a foolish sense of hope that she’s going to get better, even though the doctors have said otherwise. I can’t imagine a life without her. It’s impossible.

    She doesn’t know about her prognosis. She knows what hospice is and what it means, but she doesn’t know that she has THAT short left. Or at least, she doesn’t say she knows. I have a feeling she does, she’s always been good at reading people and she kept saying she loves my mother, siblings and I and apologizing.

    I’m feeling such a sense of anticipatory grief. I think I’ll shrivel up the moment anything happens to her. It’s too impossible to imagine, too heart wrenching. I keep waking up and sobbing, falling apart and I’m trying to keep it together. I feel so alone.

    I’m trying to record everything; her laughing, her smiling, pictures of her enjoying Popsicles, of us watching. I keep wanting to touch her and take it all away. I wish it was me instead of her so very badly.

    She’s asleep at the moment. She’s still laughing, still aware and awake, but she keeps saying how tired she is and I choke up. My mom does too and I can tell. My aunt told me that when my mom first got her prognosis, all she could do was scream and scream. I was down at college during this time, but I rode up to the hospital three days ago and that’s when I found out. My aunt told me to get my sister’s favorite pink dress, a really expensive one she bought during her make-a-wish, and I did, happily thinking that she missed it.

    I presented the dress to my sister when I got to the hospital happily, but was met with my mother’s angry face instead. It turns out that my mom was the one who asked for it, not my sister, and the reason why was because she didn’t have that much time left and my mom wanted to dress her up with it as a surprise. I was confused as to why she was angry, and then my aunt told me; she only had a week to a couple days left. I broke down crying with her in the car and we cried for hours and hours. It’s still hard holding back tears even now. My mom came around and apologized for getting angry. She hugged me and we both cried.

    My sister is so strong. She’s the closest person I’ve ever met to being perfect. She always tries to do the right thing, she’s thoughtful of me and other people and she is dedicated and loyal. I can sense the tiredness from my mom. Once everything happens, I know my family is going to change forever, possibly for the worse. I’m resisting the urge to follow right behind my sister, my true love and my best friend, but I know that my siblings wouldn’t understand and it wouldn’t be fair.

    I feel so stuck. I wish, more than anything, I could heal her. I wish I could do it all over again, I wish I could accept it more easily. The only thing I can do is cry, hold her and record. It’s all I have. I’m not certain I’ll ever be ok ever again.

    #438988
    Helcat
    Participant

    Hi Lulu

    I love the beautiful memories you shared about your sister. Please feel free to continue to share as much as you want about anything you want.

    You, your family and your sister have been through so much and are going through so much right now.

    It is a hard way for you to find out how long your sister has left. I don’t imagine there is an easy way to find out, but there is a kinder way to find out. I’m sorry that your mom is having difficulty talking about it.

    I can’t imagine how painful it must feel to have days or a week left with a sister. Is there anything that you would like to do with her, your family would like to do with her? Anything that she would like to do with you? Anything that you would like to say to her?

    I can tell how much she means to you and to you all. How much you love her. I know that one thing is important. To hug her and to tell her you love her every time you see her.

    I can tell how much she loves you all because of how hard she fought to stay with you all as long as she could and tried her best to be strong for you all.

    I can see how hard it is for you, grieving your beautiful sister. Please communicate to your family when you need help and support with that. Your aunt sounds like a good person to confide in. You deserve support! Please do not suffer with this alone.

    Love and best wishes! ❤️🙏

    #438990
    anita
    Participant

    Dear Lulu:

    I am so sorry, Lulu, that your sister’s cancer is now at stage 4, and that understandably, you are in much pain.

    You ended your today’s post (Oct 27, 2024) with: “I feel so stuck. I wish, more than anything, I could heal her. I wish I could do it all over again, I wish I could accept it more easily. The only thing I can do is cry, hold her and record. It’s all I have. I’m not certain I’ll ever be ok ever again.“-

    – You expressed above how much you wish that you could heal her. You may not be able to heal her, but you can help her. On May 1 this year, five months and 26 days ago, you wrote (I am adding the boldface feature selectively here): “A large part of me wants to go into the psychology field to learn my place in the world both socially and mentally, and to explore a side of myself that I find uncomfortable or disconnected so that I could help others.

    Helping others is a high value for you, something that you are passionate about. Let this passion keep you strong and determined to live and help yourself and others.

    She’s always been a leader, not a follower… She’s an artist… She’s a perfectionist. She spent hours practicing her curves until it was perfect, and threw away so many art pieces and drawings because they ‘weren’t good enough’… She was a straight-A student throughout middle school… She was always surrounded by her friends… She doesn’t complain; she always makes the best of things… always spoke her mind… Above all else, though, she’s always been my best friend… I was always the writer, and she was the artist.. My sister is so strong… She always tries to do the right thing“-

    – I notice how at times you refer to her in the past tense. I notice your great love for her. Your great love for her is never going to be in the past tense, is it. Fueled by your love for her, make some of your sister’s ways be your ways: be more of a leader, less of a follower. Make the best of things.. best you can. Speak your mind more often. Be a best friend to others. Continue to be the writer, the talented writer that you are. Be strong. Continue to try to do the right thing.

    Here is a poem that appeared first in Dec 1934, close to 90 years ago, in its original version (under the title Immortality): “Do not stand at my grave and weep- I am not there; I do not sleep.- I am a thousand winds that blow.- I am the diamond glints on snow.- I am the sunlight on ripened grain.- I am the gentle autumn rain.- When you awaken in the morning’s hush- I am the swift uplifting rush- Of quiet birds in circled flight.- I am the soft stars that shine at night.- Do not stand at my grave and cry;- I am not there. I did not die.”

    It’s good to read from you again, Lulu, 2 months and 25 days since you posted last (Aug 2, 2024). I would like to read from you again and again. It’s a privilege to read your heart-felt, talented and insightful posts.

    anita

     

    #439001
    anita
    Participant

    Thinking of you and your family, Lulu.

    anita

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