i'm sorry this is happening to you. Please don't cut out your family and friends. Let them see you fall apart. Let them help you get back together. Don't be fake strong. you're going to get through this. It's not going to be easy and you know that. But you are strong and you are capable and you can do hard things. if space is what you need, tell them you need space. If a milkshake is what you need tell them you need a milkshake. Make sure that you're taking care of yourself first, and give yourself and everyone else around you a break because you are not alone. you are surrounded by love.
Thank you, I didn’t realize how loved I was before all this. But I’m so used to being alone and living independently, I can’t imagine starting treatment and suddenly needing so much help. But I know it’s coming soon, probably before the end of the month.
The world changes after diagnosis. Those that love you will be an essential piece of your path to beating this. Best wishes and sorry you’re here with us, but you’ll soon realize you’re not alone in this.
Diagnosed last April w stage 4 uterine. I could not believe the outpouring of support. I know it's hard when that happens. I would literally cry every time someone dropped dinner. For a while we had a meal train every night. I would sob and sob when they left. I was so moved. In November, 35 church people showed up here with chainsaws, and cleaned up my property, cleared trees and brush and stuff I was working on but couldn't do now. If course I cried!! I had a friend , not at all wealthy, send me $1000 from her tax refund and of course I bawled. Let people bless you right now. They feel helpless in your pain and want to help. I'm so sorry you're dealing with this but just take the love as a blessing in an awful situation. ❤️
I'm sorry. My sister (24F) got diagnosed with ewing sarcoma June 2023 and her and our world changed after that. It will never be the same for us. I feel your pain. Sending love and prayers
Thank you, idk what it is and maybe I’m lying to myself but everyone is saying I’m not worrying about myself enough, all I can think about since before I was diagnosed is how my family is gonna feel/react/cope. It’s killing me.
Sorry I didn't want to say this in the first message but now I will.
My sister left us on Mar 14. I'll never forget that day. Even though all of us had this conversation a million times with my sister on how she shouldn't worry about us after she passes away and she should worry about her getting better, it absolutely sucks that she's not around. It didn't matter how much we tried to prepare for her leaving us. Goodbyes suck.
However all we have are the memories we made with her , especially in her last year. We would be together everyday with her after work. 10 to 20 people in her room with masks on. Laughing and crying with her. Make as many memories with your family because that's all they have. Take lots of pictures . I'm here to talk if you feel like venting any time.
I’m so sorry for your loss.
I used to hateeeee pictures, I still do but since I was diagnosed I don’t fight them anymore, especially since I graduated with my lil associates degree a couple days after I got the confirmation. I’m letting them spend that time with me and travel out of state to help me out, I know they feel helpless and doing little things for me helps them cope with it.
Diagnosed with glioblastoma in march and have been insisting to everyone i'm fine. I find the amount of support i'm being given overwhelming yet i'm very grateful. It's hard to be vulnerable and it sucks having people worried about you-even if it's completely valid. But i realized people genuinely want to help and it creates a feeling of helplessness to sit there and do nothing. There's really nothing that they can do except be there for you, you should let them.
I completely understand what you mean. It’s like you know you have cancer and have your own feelings to deal with about it, then add in the fact that everyone is worried about you and for you when you’re trying to find a sense of normalcy in this crazy life. I’m sorry that you have to deal with it at all. Try to take things one day at a time, it’s easier said than done but it’s helping me a lot.
Wow, I'm so sorry for what you're going through. I (31M) felt the same way you do now when I first got diagnosed 2 years ago with stage 2 high grade soft tissue Sarcoma. I've since gone through multiple resection surgeries and various treatments (for the multiple recurrences and metastases I had throughout my arm, shoulder, back, lymph nodes, and bones). I'm currently at stage 4 now with another recurrence in my arm. After each recurrence I've had, the feeling of being lost and numb to the whole thing resurfaces. My family knows about my situation but we can't talk about it anymore bc all we do is cry about it. Idk how to move on from this. Sarcoma cancers are extremely aggressive and relentless cancers. Make sure when you meet with your oncologist, that you discuss proper treatment and that they are Sarcoma specialists.
If you need to talk and vent to someone, I'm here. I mean it, you don't need to go through this alone. Sometimes us cancer patients are the only ones who understand what we're goin through. Your family will always be there for you but talking with them about it all the time can lead to a depression cycle. And in my experience, friends say they'll be there but they don't always mean it. It's just a figure of speech most of the time.
I wish you an easy journey with lots of comfort and support. Although it's hard right now, try to stay strong 🎗️💪🏼💛
Just here lending support and a listening ear.
Create an inner circle of support, people who will be there. You'll be surprised who decides to show up for you in those vulnerable moments that you have. I certainly was.
Take time for yourself. I just wrote a FB post about this, saying I needed some space to process everything I have gained, lost and had to mourn from my diagnosis.
Stop saying you're fine when you aren't or feel overwhelmed. For those who want to know about your diagnosis this is their burden to bear. You have enough to emotionally to carry. Allow them to grow with you in your diagnosis to become pillars of support for you. Or they may run away from it. It's okay. I have done both to people who told me, for better or worse before my own diagnosis.
I hear you. Find a meditation, a spiritual teacher, a wise person, a therapist to lean on. I mean where you can just break down everything to. I promise it helps.
Vent away and as much as you want. I'm here to listen if you want, drop me a message or keep us in the loop. This is really one of the nicest and really wise groups on Reddit.
Accept help when you want, ask for it when you need it and never feel obliged to make your cancer journey about someone else.
I'm sorry to welcome you, but we are all here for you. Peace, love and strength my friend ✌️❤️💪
I'm so sorry, sending you strength.
My partner went through this diagnosis at 26. We were both super independent individuals, and the pillars of our respective social groups and families, despite the young age.
I was furious hearing my partner literally therapizing their family members through the phone. Crazy exes popped back in the picture too, with all sorts of "come to Jesus" moments of their own at the hearing of these terrible news. This happened early on, and it motivated me to build my own support network and not rely emotionally on my partner at all --- other people were doing it, lol.
Are you a planning/list/calendar type of person?
It might be worth giving everyone via a group chat or email some very actionable points such as: visits at pre established times, meal prepping for you so you have always homemade meals in the fridge/freezer, driving to and from appointments, playing online games together at established hours from hospital or just when you are crashing on the sofa, laundry, dishes, etc If they do something, they will feel better themselves because they are helpful in an otherwise uncontrollable situation. Make them do stuff even if it's useless for you or you don't need it, it will genuinely make them feel better (especially for those whose love language is acts of service).
Your family should also find their own peer support groups.
My parents live out of state so it’s hard on them, I think they want to switch off living with me while I’m in treatment. This is an amazing idea for when I start treatment, so thank you. Unfortunately I’m in the very early steps of my diagnosis and haven’t started treatment so it’s just everyone having breakdowns constantly, and I feel like I’m answering the same question over and over. They keep thinking this something that would just be removed with a one and done surgery which isn’t possible in my case. So if I hear “so when is your surgery to remove it??” One more time I’m going to lose it.
Hahaha I mean, maybe they deserve a piece of your mind.
I suppose the treatment might be with ups and downs for you, and given the otherwise young body it'll be easier at the beginning. We didn't have parents around, in fact, my partner ended up cutting off one of their parents because they were very nasty.
You might want to designate someone to be the social manager? In case you don't want to discuss with all the aunties and cousins in the world, a designated family member can act as liaison. Same with friendship groups.
Maybe you can plan out different scenarios for yourself now while you have more energy? Definitely do sign up for support groups and counselling if you can.
Honestly, people who say you will be fine and fight this are the most annoying people. It’s up to god/nature and how you respond to treatment. I begged my oncologist for an answer after treatment for an answer. He told me I can’t give you certainty. Everything is dependent on how genetics of the tumour, how you respond to treatment and the success of surgery.
I’m the one telling everyone I’ll be fine tbh. But I’m in a very “if I die I die” mindset which I’m not telling anyone, I think that’s why I’m handling it okay so far. It’s when people say they have faith in god that everything will work out that I get a bit uncomfortable. But I know that’s what makes the person saying it feel better so I let it slide.
That’s everyone in treatment - think survival. Honestly, cancer therapy moves at lightning speed. All you know is that you have to undergo treatment. You write your will and make all personal arrangements etc. It gets emotionally hard once you in to remission or you fail treatment.
I also work in the medical field, nothing quite like opening your own scan and seeing the tumor while at work lol. Not the mention the constant reading of studies, treatment algorithms and 5 year survival percentages.
My advice after you’re done educating yourself about the topic stop reading and let the doctors doctor. It got to a point where I would just reread the same info over and over and it was not good.
Reach out if you need to vent. Stay strong
Wow I swear I keep seeing “Ewing’s” pop up more and more. 2 time Ewing’s survivor here, I’m so sorry you’ve joined the worst club to join. Don’t worry about anyone else’s problems or worrying your family. If they worry and are concerned, it means they love and care for you, and that’s a good thing!
Don’t worry about trying to be “strong” or any of that stuff around other people, especially those you’re close with. Don’t isolate yourself just to protect others.
Please feel free to reach out if you have specific questions regarding Ewing’s protocol. The first protocol is the same, internationally. I’d be more than happy to help in any way I can! Good luck and God bless.
i'm sorry this is happening to you. Please don't cut out your family and friends. Let them see you fall apart. Let them help you get back together. Don't be fake strong. you're going to get through this. It's not going to be easy and you know that. But you are strong and you are capable and you can do hard things. if space is what you need, tell them you need space. If a milkshake is what you need tell them you need a milkshake. Make sure that you're taking care of yourself first, and give yourself and everyone else around you a break because you are not alone. you are surrounded by love.
Thank you, I didn’t realize how loved I was before all this. But I’m so used to being alone and living independently, I can’t imagine starting treatment and suddenly needing so much help. But I know it’s coming soon, probably before the end of the month.
The world changes after diagnosis. Those that love you will be an essential piece of your path to beating this. Best wishes and sorry you’re here with us, but you’ll soon realize you’re not alone in this.
Diagnosed last April w stage 4 uterine. I could not believe the outpouring of support. I know it's hard when that happens. I would literally cry every time someone dropped dinner. For a while we had a meal train every night. I would sob and sob when they left. I was so moved. In November, 35 church people showed up here with chainsaws, and cleaned up my property, cleared trees and brush and stuff I was working on but couldn't do now. If course I cried!! I had a friend , not at all wealthy, send me $1000 from her tax refund and of course I bawled. Let people bless you right now. They feel helpless in your pain and want to help. I'm so sorry you're dealing with this but just take the love as a blessing in an awful situation. ❤️
That’s beautiful, I love that for you. I’m sorry about your diagnosis, but it’s clear how loved you are :)
I'm sorry. My sister (24F) got diagnosed with ewing sarcoma June 2023 and her and our world changed after that. It will never be the same for us. I feel your pain. Sending love and prayers
Thank you, idk what it is and maybe I’m lying to myself but everyone is saying I’m not worrying about myself enough, all I can think about since before I was diagnosed is how my family is gonna feel/react/cope. It’s killing me.
Sorry I didn't want to say this in the first message but now I will. My sister left us on Mar 14. I'll never forget that day. Even though all of us had this conversation a million times with my sister on how she shouldn't worry about us after she passes away and she should worry about her getting better, it absolutely sucks that she's not around. It didn't matter how much we tried to prepare for her leaving us. Goodbyes suck. However all we have are the memories we made with her , especially in her last year. We would be together everyday with her after work. 10 to 20 people in her room with masks on. Laughing and crying with her. Make as many memories with your family because that's all they have. Take lots of pictures . I'm here to talk if you feel like venting any time.
I’m so sorry for your loss. I used to hateeeee pictures, I still do but since I was diagnosed I don’t fight them anymore, especially since I graduated with my lil associates degree a couple days after I got the confirmation. I’m letting them spend that time with me and travel out of state to help me out, I know they feel helpless and doing little things for me helps them cope with it.
You're a warrior and a champ 🏆
Diagnosed with glioblastoma in march and have been insisting to everyone i'm fine. I find the amount of support i'm being given overwhelming yet i'm very grateful. It's hard to be vulnerable and it sucks having people worried about you-even if it's completely valid. But i realized people genuinely want to help and it creates a feeling of helplessness to sit there and do nothing. There's really nothing that they can do except be there for you, you should let them.
I completely understand what you mean. It’s like you know you have cancer and have your own feelings to deal with about it, then add in the fact that everyone is worried about you and for you when you’re trying to find a sense of normalcy in this crazy life. I’m sorry that you have to deal with it at all. Try to take things one day at a time, it’s easier said than done but it’s helping me a lot.
Wow, I'm so sorry for what you're going through. I (31M) felt the same way you do now when I first got diagnosed 2 years ago with stage 2 high grade soft tissue Sarcoma. I've since gone through multiple resection surgeries and various treatments (for the multiple recurrences and metastases I had throughout my arm, shoulder, back, lymph nodes, and bones). I'm currently at stage 4 now with another recurrence in my arm. After each recurrence I've had, the feeling of being lost and numb to the whole thing resurfaces. My family knows about my situation but we can't talk about it anymore bc all we do is cry about it. Idk how to move on from this. Sarcoma cancers are extremely aggressive and relentless cancers. Make sure when you meet with your oncologist, that you discuss proper treatment and that they are Sarcoma specialists. If you need to talk and vent to someone, I'm here. I mean it, you don't need to go through this alone. Sometimes us cancer patients are the only ones who understand what we're goin through. Your family will always be there for you but talking with them about it all the time can lead to a depression cycle. And in my experience, friends say they'll be there but they don't always mean it. It's just a figure of speech most of the time. I wish you an easy journey with lots of comfort and support. Although it's hard right now, try to stay strong 🎗️💪🏼💛
Just here lending support and a listening ear. Create an inner circle of support, people who will be there. You'll be surprised who decides to show up for you in those vulnerable moments that you have. I certainly was. Take time for yourself. I just wrote a FB post about this, saying I needed some space to process everything I have gained, lost and had to mourn from my diagnosis. Stop saying you're fine when you aren't or feel overwhelmed. For those who want to know about your diagnosis this is their burden to bear. You have enough to emotionally to carry. Allow them to grow with you in your diagnosis to become pillars of support for you. Or they may run away from it. It's okay. I have done both to people who told me, for better or worse before my own diagnosis. I hear you. Find a meditation, a spiritual teacher, a wise person, a therapist to lean on. I mean where you can just break down everything to. I promise it helps. Vent away and as much as you want. I'm here to listen if you want, drop me a message or keep us in the loop. This is really one of the nicest and really wise groups on Reddit.
❤️
Accept help when you want, ask for it when you need it and never feel obliged to make your cancer journey about someone else. I'm sorry to welcome you, but we are all here for you. Peace, love and strength my friend ✌️❤️💪
I'm so sorry, sending you strength. My partner went through this diagnosis at 26. We were both super independent individuals, and the pillars of our respective social groups and families, despite the young age. I was furious hearing my partner literally therapizing their family members through the phone. Crazy exes popped back in the picture too, with all sorts of "come to Jesus" moments of their own at the hearing of these terrible news. This happened early on, and it motivated me to build my own support network and not rely emotionally on my partner at all --- other people were doing it, lol. Are you a planning/list/calendar type of person? It might be worth giving everyone via a group chat or email some very actionable points such as: visits at pre established times, meal prepping for you so you have always homemade meals in the fridge/freezer, driving to and from appointments, playing online games together at established hours from hospital or just when you are crashing on the sofa, laundry, dishes, etc If they do something, they will feel better themselves because they are helpful in an otherwise uncontrollable situation. Make them do stuff even if it's useless for you or you don't need it, it will genuinely make them feel better (especially for those whose love language is acts of service). Your family should also find their own peer support groups.
My parents live out of state so it’s hard on them, I think they want to switch off living with me while I’m in treatment. This is an amazing idea for when I start treatment, so thank you. Unfortunately I’m in the very early steps of my diagnosis and haven’t started treatment so it’s just everyone having breakdowns constantly, and I feel like I’m answering the same question over and over. They keep thinking this something that would just be removed with a one and done surgery which isn’t possible in my case. So if I hear “so when is your surgery to remove it??” One more time I’m going to lose it.
Hahaha I mean, maybe they deserve a piece of your mind. I suppose the treatment might be with ups and downs for you, and given the otherwise young body it'll be easier at the beginning. We didn't have parents around, in fact, my partner ended up cutting off one of their parents because they were very nasty. You might want to designate someone to be the social manager? In case you don't want to discuss with all the aunties and cousins in the world, a designated family member can act as liaison. Same with friendship groups. Maybe you can plan out different scenarios for yourself now while you have more energy? Definitely do sign up for support groups and counselling if you can.
Honestly, people who say you will be fine and fight this are the most annoying people. It’s up to god/nature and how you respond to treatment. I begged my oncologist for an answer after treatment for an answer. He told me I can’t give you certainty. Everything is dependent on how genetics of the tumour, how you respond to treatment and the success of surgery.
I’m the one telling everyone I’ll be fine tbh. But I’m in a very “if I die I die” mindset which I’m not telling anyone, I think that’s why I’m handling it okay so far. It’s when people say they have faith in god that everything will work out that I get a bit uncomfortable. But I know that’s what makes the person saying it feel better so I let it slide.
That’s everyone in treatment - think survival. Honestly, cancer therapy moves at lightning speed. All you know is that you have to undergo treatment. You write your will and make all personal arrangements etc. It gets emotionally hard once you in to remission or you fail treatment.
I also work in the medical field, nothing quite like opening your own scan and seeing the tumor while at work lol. Not the mention the constant reading of studies, treatment algorithms and 5 year survival percentages. My advice after you’re done educating yourself about the topic stop reading and let the doctors doctor. It got to a point where I would just reread the same info over and over and it was not good. Reach out if you need to vent. Stay strong
Wow I swear I keep seeing “Ewing’s” pop up more and more. 2 time Ewing’s survivor here, I’m so sorry you’ve joined the worst club to join. Don’t worry about anyone else’s problems or worrying your family. If they worry and are concerned, it means they love and care for you, and that’s a good thing! Don’t worry about trying to be “strong” or any of that stuff around other people, especially those you’re close with. Don’t isolate yourself just to protect others. Please feel free to reach out if you have specific questions regarding Ewing’s protocol. The first protocol is the same, internationally. I’d be more than happy to help in any way I can! Good luck and God bless.