#ayacsm Transcript
Healthcare social media transcript of the #ayacsm hashtag.
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See #ayacsm Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: Welcome to the #AYACSM tweet chat!! We're so glad to have you with us this evening! Be sure to tweet along using: Welcome to the #AYACSM tweet chat!! We're so glad to have you with us this evening! Be sure to tweet along using: #AYACSM (make sure to put it at the end of every tweet) |
 | Emily K. Drake @EK_Drake As a reminder, this chat is for advocates involved in the adolescent and young adult cancer societal movement #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: As a reminder, this chat is for advocates involved in the adolescent and young adult cancer societal movement #AYACSM |
| Emily K. Drake @EK_Drake An advocate is anyone who speaks, writes or in other ways actively supports the AYA cancer movement as a whole #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: An advocate is anyone who speaks, writes or in other ways actively supports the AYA cancer movement as a whole #AYACSM |
| Emily K. Drake @EK_Drake ALL are welcome to the #AYACSM (adolescent and young adult cancer societal movement) tweet chat starting now! #AYACancer #BTSM #BCSM #GYNCSM #LCSM |
 | Pat Taylor @PatTaylorCR RT @EK_Drake: Welcome to the #AYACSM tweet chat!! We're so glad to have you with us this evening! Be sure to tweet along using: Welcome to the #AYACSM tweet chat!! We're so glad to have you with us this evening! Be sure to tweet along using: #AYACSM (make sure to put it at the end of every tweet) |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: ALL are welcome to the #AYACSM (adolescent and young adult cancer societal movement) tweet chat starting now! #AYACancer #BTSM #BCSM #GYNCSM #LCSM |
| Pat Taylor @PatTaylorCR RT @EK_Drake: As a reminder, this chat is for advocates involved in the adolescent and young adult cancer societal movement #AYACSM |
| Emily K. Drake @EK_Drake I am SO pleased to introduce tonight's incredible guest moderator: @deanaruston Take it away, Deana! #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: I am SO pleased to introduce tonight's incredible guest moderator: I am SO pleased to introduce tonight's incredible guest moderator: @deanaruston Take it away, Deana! #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Tonight, we will be talking about grief and social media! #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Let’s start by doing introductions, giving your name, location, and affiliation with the young adult cancer advocacy & AYA cancer community. #AYACSM |
 | Nina Martínez @marganina I feel welcomed and may have graduated from #AYACSM lurker :) |
| Emily K. Drake @EK_Drake @marganina Yes!!! :) Glad you can join! #AYACSM |
 | Kimberly Miller, PhD @KimMillerPhD @deanaruston Hi! 👋 I’m Kim, a #YAcancer researcher from USC in Los Angeles. #AYACSM |
| Emily K. Drake @EK_Drake RT @deanaruston: Tonight, we will be talking about grief and social media! #AYACSM |
| Emily K. Drake @EK_Drake RT @deanaruston: Let’s start by doing introductions, giving your name, location, and affiliation with the young adult cancer advocacy & AYA cancer community. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD RT @deanaruston: Tonight, we will be talking about grief and social media! #AYACSM |
| Pat Taylor @PatTaylorCR @EK_Drake Greetings! #ayacsm |
| Emily K. Drake @EK_Drake @deanaruston Emily Drake - Co-founder of #AYACSM - Halifax, Nova Scotia - PhD in Health Student - #AYACancer researcher |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Hi everyone! I'm Deana, I live in London, Ontario, 🇨🇦 & am a thyroid cancer lifer! I was diagnosed with thyroid cancer at 22 in 2014- I'm now 27. Ironically during my diagnosis I was working on my undergrad in Grief Counselling- so that was interesting to say the least! #AYACSM |
| Emily K. Drake @EK_Drake I forgot to mention that #ayacsm was co-founded by @ukfann00, @StupidCancer and I! |
| Kimberly Miller, PhD @KimMillerPhD @EK_Drake @marganina Hi @marganina! I enjoy your Twitter feed. Welcome! #AYACSM |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: @deanaruston Hi! 👋 I’m Kim, a #YAcancer researcher from USC in Los Angeles. #AYACSM |
 | Dr. Perri Tutelman @DrPerriTutelman Hello! I’m a PhD student in Clinical Psychology in Halifax Canada researching pain and psychosocial oncology #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston @marganina So glad you could join us, Nina!!! #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: I forgot to mention that #ayacsm was co-founded by @ukfann00, @StupidCancer and I! |
| Emily K. Drake @EK_Drake @KimMillerPhD @deanaruston Welcome, Kim!! #AYACSM https://t.co/DR4x3MW8nu |
 | Cancer Girl @cancergirl730 @EK_Drake @ukfann00 @StupidCancer I'm here! Nails are wet, but I'm here! #AYACSM |
| Emily K. Drake @EK_Drake @PatTaylorCR Welcome, Pat!! #AYACSM https://t.co/8hJQSOLnM2 |
| Emily K. Drake @EK_Drake RT @deanaruston: Hi everyone! I'm Deana, I live in London, Ontario, 🇨🇦 & am a thyroid cancer lifer! I was diagnosed with thyroid cancer at 22 in 2014- I'm now 27. Ironically during my diagnosis I was working on my undergrad in Grief Counselling- so that was interesting to say the least! #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @EK_Drake @deanaruston 🥰 #AYACSM |
| Emily K. Drake @EK_Drake RT @PerriTutelman: Hello! I’m a PhD student in Clinical Psychology in Halifax Canada researching pain and psychosocial oncology #AYACSM |
| Emily K. Drake @EK_Drake @PerriTutelman Welcome, Perri! #AYACSM https://t.co/flINZd7LNi |
| Cancer Girl @cancergirl730 RT @EK_Drake: Coming up next week: Coming up next week: A special chat about #grief and #SocialMedia in the adolescent and young adult (AYA) #cancer community with @deanaruston #AYACSM #TYACancer #AYACancer #BTSM #BCSM #LCSM #GYNCSM https://t.co/NGAmAekGW4 |
| Pat Taylor @PatTaylorCR @deanaruston Founder of Chasing Rainbows Young Adult Cancer Advocacy Vancouver, BC Hi @deanaruston @EK_Drake #ayacsm |
 | Team Shan (Lorna Larsen) @TeamShan @deanaruston Hi Deana Lorna here, from Huntsville, ON President of @TeamShan Breast Cancer Awareness for Young Women Lost my daughter, Shanna to breast cancer at the age of 24 #ayacsm |
| Pat Taylor @PatTaylorCR RT @EK_Drake: I forgot to mention that #ayacsm was co-founded by @ukfann00, @StupidCancer and I! |
| Emily K. Drake @EK_Drake @cancergirl730 @ukfann00 @StupidCancer Yayy!! Welcome!! #AYACSM https://t.co/3cOh7zkJ7U |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Being an AYA and/or working in the #AYACSM field often means meeting people from around the world who are living with cancer. |
| Emily K. Drake @EK_Drake RT @PatTaylorCR: @deanaruston Founder of Chasing Rainbows Young Adult Cancer Advocacy Vancouver, BC Hi @deanaruston @EK_Drake #ayacsm |
| Emily K. Drake @EK_Drake RT @TeamShan: @deanaruston Hi Deana Lorna here, from Huntsville, ON President of @TeamShan Breast Cancer Awareness for Young Women Lost my daughter, Shanna to breast cancer at the age of 24 #ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Unfortunately, some of these friends die. Oftentimes, we find out that they have died via #SocialMedia whether that be from their own page/ profile, a Facebook group or mutual friend. #AYACSM |
| Cancer Girl @cancergirl730 @EK_Drake @ukfann00 @StupidCancer OMG! You. Are. The. Best. #AYACSM |
| Emily K. Drake @EK_Drake @TeamShan @deanaruston Welcome, Lorna! #AYACSM https://t.co/L3P0orhNwx |
| Emily K. Drake @EK_Drake RT @deanaruston: Being an AYA and/or working in the #AYACSM field often means meeting people from around the world who are living with cancer. |
| Team Shan (Lorna Larsen) @TeamShan Thank you so much 💕 #ayacsm |
| Nina Martínez @marganina I'm Nina from Atlanta, GA -- I'm very #AYACancer -adjacent. Most know my bff @michelerhee , and some may know our late friend @abbyprestin . Have participated in #EOL research for #AYACancer & AYA HIV. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Q1: What feelings come to mind when you find out via social media that someone in the #AYACSM or chronic illness community community has died? |
| Cancer Girl @cancergirl730 @deanaruston A1: I cry, even if I never met them. Normally take a day off social media to process. #AYACSM |
| Emily K. Drake @EK_Drake RT @deanaruston: Unfortunately, some of these friends die. Oftentimes, we find out that they have died via #SocialMedia whether that be from their own page/ profile, a Facebook group or mutual friend. #AYACSM |
| Pat Taylor @PatTaylorCR @TeamShan @deanaruston Like Lorna of @TeamShan My daughter Sara died from cancer at age 26. I am interested in hearing you speak on grief. #ayacsm |
| Emily K. Drake @EK_Drake RT @marganina: I'm Nina from Atlanta, GA -- I'm very #AYACancer -adjacent. Most know my bff @michelerhee , and some may know our late friend @abbyprestin . Have participated in #EOL research for #AYACancer & AYA HIV. #AYACSM |
| Emily K. Drake @EK_Drake RT @deanaruston: Q1: Q1: What feelings come to mind when you find out via social media that someone in the #AYACSM or chronic illness community community has died? |
 | Renee Kaiman @MSCMommyLife @deanaruston @EK_Drake Hi! I’m Renee from Toronto. Living and thriving with metastatic breast cancer since 2017 after being originally diagnosed early stage BC in 2015 #AYACSM |
| Emily K. Drake @EK_Drake RT @cancergirl730: @deanaruston A1: @deanaruston A1: I cry, even if I never met them. Normally take a day off social media to process. #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan @deanaruston True, I am often informed of young adult passings through social media as well #ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston A1: Finding out someone has died through social media can be incredibly difficult as you can be "just scrolling along on social media" then BAM! It can come as a shock. #AYACSM |
| Renee Kaiman @MSCMommyLife @deanaruston @EK_Drake A1- I get sad and know that it could be me too #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @MSCMommyLife: @deanaruston @EK_Drake A1- I get sad and know that it could be me too #AYACSM |
| Cancer Girl @cancergirl730 RT @MSCMommyLife: @deanaruston @EK_Drake A1- I get sad and know that it could be me too #AYACSM |
| Nina Martínez @marganina I'm Nina from Atlanta, GA -- I'm very #AYACancer -adjacent. Most know my bff @michelerhee, and some may know our late friend, @abbyprestin. Have participated in #EOL research for #AYACancer & AYA HIV. #AYACSM (Also tech difficulties, but will catch up!) |
| Emily K. Drake @EK_Drake @deanaruston I'm so happy that this is a topic that we are discussing tonight and am thankful for @deanaruston taking the lead on moderating it #AYACSM |
| Emily K. Drake @EK_Drake RT @MSCMommyLife: @deanaruston @EK_Drake Hi! I’m Renee from Toronto. Living and thriving with metastatic breast cancer since 2017 after being originally diagnosed early stage BC in 2015 #AYACSM |
| Cancer Girl @cancergirl730 RT @EK_Drake: @deanaruston I'm so happy that this is a topic that we are discussing tonight and am thankful for @deanaruston taking the lead on moderating it #AYACSM |
| Emily K. Drake @EK_Drake RT @PatTaylorCR: @TeamShan @deanaruston Like Lorna of @TeamShan My daughter Sara died from cancer at age 26. I am interested in hearing you speak on grief. #ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: @deanaruston I'm so happy that this is a topic that we are discussing tonight and am thankful for @deanaruston taking the lead on moderating it #AYACSM |
| Pat Taylor @PatTaylorCR @deanaruston A1: sad, sometimes angry for the loss of a young life #ayacsm |
| Renee Kaiman @MSCMommyLife @deanaruston This is where it gets complicated being part of a community where people’s situations can change at any moment and that is touched so much with death #AYACSM |
| Emily K. Drake @EK_Drake @MSCMommyLife @deanaruston Welcome! So happy that you came! #AYACSM |
| Emily K. Drake @EK_Drake RT @TeamShan: @deanaruston True, I am often informed of young adult passings through social media as well #ayacsm |
| Emily K. Drake @EK_Drake RT @deanaruston: A1: A1: Finding out someone has died through social media can be incredibly difficult as you can be "just scrolling along on social media" then BAM! It can come as a shock. #AYACSM |
| Emily K. Drake @EK_Drake RT @MSCMommyLife: @deanaruston @EK_Drake A1- I get sad and know that it could be me too #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @cancergirl730 @deanaruston A1: Yes what @cancergirl730 said. Also even if just find out via other friends and read their timeline I feel incredibly sad. #AYACSM |
| Emily K. Drake @EK_Drake RT @marganina: I'm Nina from Atlanta, GA -- I'm very #AYACancer -adjacent. Most know my bff @michelerhee, and some may know our late friend, @abbyprestin. Have participated in #EOL research for #AYACancer & AYA HIV. #AYACSM (Also tech difficulties, but will catch up!) |
| Cancer Girl @cancergirl730 RT @KimMillerPhD: @cancergirl730 @deanaruston A1: @cancergirl730 @deanaruston A1: Yes what @cancergirl730 said. Also even if just find out via other friends and read their timeline I feel incredibly sad. #AYACSM |
 | Dani Taylor (She/Her) @danimarietaylor @deanaruston I’m late! I’m Dani, I’m in Toronto, I’m with @gildastoronto but also exist in the space as someone living after a #AYAcancer diagnosis. #AYACSM |
| Pat Taylor @PatTaylorCR @TeamShan @deanaruston So true, Lorna. #ayacsm |
| Dr. Perri Tutelman @DrPerriTutelman @deanaruston Yes. I was going to say that the finality of it always feels shocking, even if we knew it was coming #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston @MSCMommyLife @EK_Drake I definitely can empathize with this feeling. It's also really hard that as adolescents and young adults we're facing our friends die. This doesn't typically happen in our age group for most people. #AYACSM |
| Renee Kaiman @MSCMommyLife @EK_Drake @deanaruston Thanks! Happy to be here #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @PerriTutelman: @deanaruston Yes. I was going to say that the finality of it always feels shocking, even if we knew it was coming #AYACSM |
| Nina Martínez @marganina RT @PatTaylorCR: @deanaruston A1: @deanaruston A1: sad, sometimes angry for the loss of a young life #ayacsm |
| Cancer Girl @cancergirl730 RT @deanaruston: @MSCMommyLife @EK_Drake I definitely can empathize with this feeling. It's also really hard that as adolescents and young adults we're facing our friends die. This doesn't typically happen in our age group for most people. #AYACSM |
| Emily K. Drake @EK_Drake @deanaruston A1: One of the reasons we started these chats was to have real conversations. Professionals are often made and told that it is taboo to talk about this. Many of the founding members of this tweet chat have died in recent years and most of us found out through #socialmedia #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @PatTaylorCR: @deanaruston A1: @deanaruston A1: sad, sometimes angry for the loss of a young life #ayacsm |
| Emily K. Drake @EK_Drake RT @PatTaylorCR: @deanaruston A1: @deanaruston A1: sad, sometimes angry for the loss of a young life #ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: @deanaruston A1: @deanaruston A1: One of the reasons we started these chats was to have real conversations. Professionals are often made and told that it is taboo to talk about this. Many of the founding members of this tweet chat have died in recent years and most of us found out through #socialmedia #AYACSM |
| Emily K. Drake @EK_Drake RT @MSCMommyLife: @deanaruston This is where it gets complicated being part of a community where people’s situations can change at any moment and that is touched so much with death #AYACSM |
| Cancer Girl @cancergirl730 RT @EK_Drake: @deanaruston A1: @deanaruston A1: One of the reasons we started these chats was to have real conversations. Professionals are often made and told that it is taboo to talk about this. Many of the founding members of this tweet chat have died in recent years and most of us found out through #socialmedia #AYACSM |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: @cancergirl730 @deanaruston A1: @cancergirl730 @deanaruston A1: Yes what @cancergirl730 said. Also even if just find out via other friends and read their timeline I feel incredibly sad. #AYACSM |
| Nina Martínez @marganina RT @deanaruston: @MSCMommyLife @EK_Drake I definitely can empathize with this feeling. It's also really hard that as adolescents and young adults we're facing our friends die. This doesn't typically happen in our age group for most people. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @PerriTutelman @deanaruston A1: Sometimes I keep revisiting their feed or page because it’s hard to process. #AYACSM |
| Emily K. Drake @EK_Drake RT @dtayl: @deanaruston I’m late! I’m Dani, I’m in Toronto, I’m with @gildastoronto but also exist in the space as someone living after a #AYAcancer diagnosis. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @MSCMommyLife: @deanaruston This is where it gets complicated being part of a community where people’s situations can change at any moment and that is touched so much with death #AYACSM |
| Emily K. Drake @EK_Drake RT @PerriTutelman: @deanaruston Yes. I was going to say that the finality of it always feels shocking, even if we knew it was coming #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @KimMillerPhD: @PerriTutelman @deanaruston A1: @PerriTutelman @deanaruston A1: Sometimes I keep revisiting their feed or page because it’s hard to process. #AYACSM |
| Emily K. Drake @EK_Drake RT @deanaruston: @MSCMommyLife @EK_Drake I definitely can empathize with this feeling. It's also really hard that as adolescents and young adults we're facing our friends die. This doesn't typically happen in our age group for most people. #AYACSM |
| Renee Kaiman @MSCMommyLife @deanaruston @EK_Drake Exactly. And it’s challenging for friends and family to understand the loss of friends that we might have only met online yet are a huge support to us through our shared experience #AYACSM |
| Dani Taylor (She/Her) @danimarietaylor @deanaruston I think about how often I grieve, how different it looks, and how resilient I have become. I believe this space could learn a lot from #HIV and #AIDs communities about community grief and recurrent grief. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @MSCMommyLife: @deanaruston @EK_Drake Exactly. And it’s challenging for friends and family to understand the loss of friends that we might have only met online yet are a huge support to us through our shared experience #AYACSM |
| Cancer Girl @cancergirl730 @KimMillerPhD @PerriTutelman @deanaruston I stay FB friends with them. IDK why, but I do. #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan @PerriTutelman @deanaruston So true! #ayacsm |
| Emily K. Drake @EK_Drake RT @MSCMommyLife: @deanaruston @EK_Drake Exactly. And it’s challenging for friends and family to understand the loss of friends that we might have only met online yet are a huge support to us through our shared experience #AYACSM |
| Emily K. Drake @EK_Drake RT @dtayl: @deanaruston I think about how often I grieve, how different it looks, and how resilient I have become. I believe this space could learn a lot from #HIV and #AIDs communities about community grief and recurrent grief. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Q2: Does finding out from social media make finding out someone has died different? How? #AYACSM |
| Emily K. Drake @EK_Drake @dtayl @deanaruston Yes - many people over the years have compared the #AYACancer movement to the #AIDS movement. I agree with you #AYACSM |
| Cancer Girl @cancergirl730 RT @deanaruston: Q2: Q2: Does finding out from social media make finding out someone has died different? How? #AYACSM |
 | Steven Holland @steveof101 RT @deanaruston: Hi everyone! I'm Deana, I live in London, Ontario, 🇨🇦 & am a thyroid cancer lifer! I was diagnosed with thyroid cancer at 22 in 2014- I'm now 27. Ironically during my diagnosis I was working on my undergrad in Grief Counselling- so that was interesting to say the least! #AYACSM |
| Emily K. Drake @EK_Drake RT @deanaruston: Q2: Q2: Does finding out from social media make finding out someone has died different? How? #AYACSM |
| Pat Taylor @PatTaylorCR @EK_Drake @cancergirl730 @deanaruston Grief from loss of a loved one is huge. Yet, grief of loss of mobility, limbs, cognitive skills,etc. Is part of the AYA cancer storyline. @deanaruston @EK_Drake #ayacsm |
| Dani Taylor (She/Her) @danimarietaylor @deanaruston My friends outside of the cancer community experience a death and take the day off. I feel like I don’t have the space to do that for how often I’m experiencing loss. It looks so different. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @dtayl: @deanaruston My friends outside of the cancer community experience a death and take the day off. I feel like I don’t have the space to do that for how often I’m experiencing loss. It looks so different. #AYACSM |
 | Amanda Crowell Itliong @MIShouldTalk @deanaruston A1: Last weekend I went to a #AYACSM memorial for a guy I used to babysit. Terrible survivors guilt |
| Kimberly Miller, PhD @KimMillerPhD @cancergirl730 @PerriTutelman @deanaruston Me too. Occasionally birthdays will pop up and it’s a difficult reminder but then I’m happy to honor the memory. #AYACSM |
| Cancer Girl @cancergirl730 @deanaruston A2: No. Because so many of us have never met in person. We only know each other online. A loss is a loss. #AYACSM |
| Nina Martínez @marganina RT @dtayl: @deanaruston I think about how often I grieve, how different it looks, and how resilient I have become. I believe this space could learn a lot from #HIV and #AIDs communities about community grief and recurrent grief. #AYACSM |
| Nina Martínez @marganina RT @EK_Drake: @dtayl @deanaruston Yes - many people over the years have compared the #AYACancer movement to the #AIDS movement. I agree with you #AYACSM |
| Cancer Girl @cancergirl730 RT @PatTaylorCR: @EK_Drake @cancergirl730 @deanaruston Grief from loss of a loved one is huge. Yet, grief of loss of mobility, limbs, cognitive skills,etc. Is part of the AYA cancer storyline. @deanaruston @EK_Drake #ayacsm |
| Emily K. Drake @EK_Drake RT @dtayl: @deanaruston My friends outside of the cancer community experience a death and take the day off. I feel like I don’t have the space to do that for how often I’m experiencing loss. It looks so different. #AYACSM |
| Emily K. Drake @EK_Drake RT @MIShouldTalk: @deanaruston A1: @deanaruston A1: Last weekend I went to a #AYACSM memorial for a guy I used to babysit. Terrible survivors guilt |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: @cancergirl730 @PerriTutelman @deanaruston Me too. Occasionally birthdays will pop up and it’s a difficult reminder but then I’m happy to honor the memory. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston A2: It can be difficult once word spreads within the Adolescent and Young Adult Cancer community & people share that someone has died. There's a somber palpable feeling within the community- a mourning. #AYACSM |
| Cancer Girl @cancergirl730 @KimMillerPhD @PerriTutelman @deanaruston How do you manage the repeated reminder? I'd love to learn your coping techniques. #AYACSM |
| Renee Kaiman @MSCMommyLife @deanaruston A2- it’s a bit different because you might not know their friends and family to connect with after their death. But finding out someone has died is devastating no matter where you find out #ayacsm |
| Emily K. Drake @EK_Drake RT @cancergirl730: @deanaruston A2: @deanaruston A2: No. Because so many of us have never met in person. We only know each other online. A loss is a loss. #AYACSM |
| Cancer Girl @cancergirl730 RT @MSCMommyLife: @deanaruston A2- it’s a bit different because you might not know their friends and family to connect with after their death. But finding out someone has died is devastating no matter where you find out #ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @KimMillerPhD: @cancergirl730 @PerriTutelman @deanaruston Me too. Occasionally birthdays will pop up and it’s a difficult reminder but then I’m happy to honor the memory. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @TeamShan @deanaruston @PerriTutelman Yes. It seems very much individual how families process this, and how people feel about it. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @cancergirl730: @deanaruston A2: @deanaruston A2: No. Because so many of us have never met in person. We only know each other online. A loss is a loss. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @MSCMommyLife: @deanaruston A2- it’s a bit different because you might not know their friends and family to connect with after their death. But finding out someone has died is devastating no matter where you find out #ayacsm |
| Emily K. Drake @EK_Drake @KimMillerPhD @cancergirl730 @PerriTutelman @deanaruston Same and I still follow many people on Twitter. I can't unfollow those who profoundly shaped my advocacy efforts due to the work we co-created. I'm not ready to #AYACSM |
| Cancer Girl @cancergirl730 RT @EK_Drake: @KimMillerPhD @cancergirl730 @PerriTutelman @deanaruston Same and I still follow many people on Twitter. I can't unfollow those who profoundly shaped my advocacy efforts due to the work we co-created. I'm not ready to #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: @KimMillerPhD @cancergirl730 @PerriTutelman @deanaruston Same and I still follow many people on Twitter. I can't unfollow those who profoundly shaped my advocacy efforts due to the work we co-created. I'm not ready to #AYACSM |
| Emily K. Drake @EK_Drake RT @PatTaylorCR: @EK_Drake @cancergirl730 @deanaruston Grief from loss of a loved one is huge. Yet, grief of loss of mobility, limbs, cognitive skills,etc. Is part of the AYA cancer storyline. @deanaruston @EK_Drake #ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston .@YACancerCanada’s Program Director usually sends out an email to let YACC community members know that someone has died with the subject line “open when you have time & privacy” with information, photos etc. along with the invitation to reach out to YACC for support. #AYACSM |
| Nina Martínez @marganina @EK_Drake @dtayl @deanaruston There is room for overlap since there are still young people dying from Kaposi's sarcoma in 2019 (esp in U.S. Deep South), an AIDS-defining cancer. Have lost two friends to this. #AYACSM |
| Emily K. Drake @EK_Drake @PatTaylorCR @cancergirl730 @deanaruston That is such a good point, Pat. We don't just grieve those who have died, but those who we see are suffering and experiencing other losses #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan @KimMillerPhD @deanaruston @PerriTutelman And when do you remove them from your friend list. This has been discussed at length in print media...hard to confirm...part of the grief process and family often keeps their sites live 💕 #ayacsm |
| Emily K. Drake @EK_Drake RT @marganina: @EK_Drake @dtayl @deanaruston There is room for overlap since there are still young people dying from Kaposi's sarcoma in 2019 (esp in U.S. Deep South), an AIDS-defining cancer. Have lost two friends to this. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @cancergirl730 @PerriTutelman @deanaruston Honestly the first time it happened I didn’t cope well. And when someone has recently died and this happens it’s very hard. But as time goes on I use it as a reminder to remember the person. Don’t know if that is helpful but...I don’t cut the link. #AYACSM |
| Cancer Girl @cancergirl730 RT @EK_Drake: @PatTaylorCR @cancergirl730 @deanaruston That is such a good point, Pat. We don't just grieve those who have died, but those who we see are suffering and experiencing other losses #AYACSM |
 | Heather Swift Morrison @heatherswifty RT @EK_Drake: An advocate is anyone who speaks, writes or in other ways actively supports the AYA cancer movement as a whole #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan @PerriTutelman @deanaruston So true #ayacsm |
| Cancer Girl @cancergirl730 RT @KimMillerPhD: @cancergirl730 @PerriTutelman @deanaruston Honestly the first time it happened I didn’t cope well. And when someone has recently died and this happens it’s very hard. But as time goes on I use it as a reminder to remember the person. Don’t know if that is helpful but...I don’t cut the link. #AYACSM |
| Dani Taylor (She/Her) @danimarietaylor @deanaruston I’ve changed how I use social media pretty drastically. FB is now only for relationships I would think of as “personal”. I’m trying to create better boundaries for myself. Cancer and death takes up so much of my bandwidth- it’s important to have safe spaces too. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Oftentimes, though these emails are after word starts to spread that someone has died in our community. Sometimes it's "too late" and the word is already out there. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @dtayl: @deanaruston I’ve changed how I use social media pretty drastically. FB is now only for relationships I would think of as “personal”. I’m trying to create better boundaries for myself. Cancer and death takes up so much of my bandwidth- it’s important to have safe spaces too. #AYACSM |
| Cancer Girl @cancergirl730 @KimMillerPhD @PerriTutelman @deanaruston I'm so sorry. I didn't cope well with my first time either. Maybe that is something we should discuss? When does it go from devastating us to this is our lives? #AYACSM |
| Pat Taylor @PatTaylorCR @deanaruston A2: social media is how I stay connected with AYAs I have met at conferences. I am grateful to hear about their happy posts. When someone dies I am glad that I found out so I can reach out to their friends and family so they know how loved that person is. @EK_Drake #ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @PatTaylorCR: @deanaruston A2: @deanaruston A2: social media is how I stay connected with AYAs I have met at conferences. I am grateful to hear about their happy posts. When someone dies I am glad that I found out so I can reach out to their friends and family so they know how loved that person is. @EK_Drake #ayacsm |
| Dani Taylor (She/Her) @danimarietaylor @deanaruston Want to note that this is a great privilege that I can do this. Not everyone can. #AYACSM |
| Emily K. Drake @EK_Drake RT @TeamShan: @KimMillerPhD @deanaruston @PerriTutelman And when do you remove them from your friend list. This has been discussed at length in print media...hard to confirm...part of the grief process and family often keeps their sites live 💕 #ayacsm |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: @cancergirl730 @PerriTutelman @deanaruston Honestly the first time it happened I didn’t cope well. And when someone has recently died and this happens it’s very hard. But as time goes on I use it as a reminder to remember the person. Don’t know if that is helpful but...I don’t cut the link. #AYACSM |
| Emily K. Drake @EK_Drake RT @cancergirl730: @KimMillerPhD @PerriTutelman @deanaruston I'm so sorry. I didn't cope well with my first time either. Maybe that is something we should discuss? When does it go from devastating us to this is our lives? #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston @KimMillerPhD Hi Kim! Thanks for joining us tonight! Glad to "see" you again! #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston @PerriTutelman Hi Perri! Thanks for joining us tonight! #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @deanaruston A2: It is different for me, maybe because the person occupies a part of my day or week & maybe I don’t know them (or well) but I become engaged with their story. People share a lot online so it can feel very immediate. #AYACSM |
| Dani Taylor (She/Her) @danimarietaylor @deanaruston @yacancercanada I think @yacancercanada does a great job with this. I’ll never forget my first email. I really think @yaccmom is incredible for the emotional labour she pours into those emails. #AYACSM |
| Dr. Perri Tutelman @DrPerriTutelman @deanaruston Thanks for hosting! #AYACSM |
| Emily K. Drake @EK_Drake @cancergirl730 @KimMillerPhD @PerriTutelman @deanaruston For me - I talked about it because I felt no one else was. I've sought out others who I feel safe/comfortable talking to. It's absolutely unjust that young people are dying of cancer. The stories and memories I have are what motivate me to continue with this work #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @deanaruston Hi Deana! Thank you for hosting! #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston @cancergirl730 @EK_Drake @ukfann00 @StupidCancer Thanks for joining us!! Fresh manicures are the best!! 💅 #AYACSM |
| Emily K. Drake @EK_Drake RT @dtayl: @deanaruston I’ve changed how I use social media pretty drastically. FB is now only for relationships I would think of as “personal”. I’m trying to create better boundaries for myself. Cancer and death takes up so much of my bandwidth- it’s important to have safe spaces too. #AYACSM |
| Cancer Girl @cancergirl730 RT @EK_Drake: @cancergirl730 @KimMillerPhD @PerriTutelman @deanaruston For me - I talked about it because I felt no one else was. I've sought out others who I feel safe/comfortable talking to. It's absolutely unjust that young people are dying of cancer. The stories and memories I have are what motivate me to continue with this work #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan @EK_Drake @deanaruston @KimMillerPhD @cancergirl730 @PerriTutelman 💕#ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston @EK_Drake @PatTaylorCR Hi Pat!! Thanks for coming tonight! #AYACSM |
| Pat Taylor @PatTaylorCR RT @EK_Drake: @cancergirl730 @KimMillerPhD @PerriTutelman @deanaruston For me - I talked about it because I felt no one else was. I've sought out others who I feel safe/comfortable talking to. It's absolutely unjust that young people are dying of cancer. The stories and memories I have are what motivate me to continue with this work #AYACSM |
| Emily K. Drake @EK_Drake RT @deanaruston: Oftentimes, though these emails are after word starts to spread that someone has died in our community. Sometimes it's "too late" and the word is already out there. #AYACSM |
| Emily K. Drake @EK_Drake RT @PatTaylorCR: @deanaruston A2: @deanaruston A2: social media is how I stay connected with AYAs I have met at conferences. I am grateful to hear about their happy posts. When someone dies I am glad that I found out so I can reach out to their friends and family so they know how loved that person is. @EK_Drake #ayacsm |
| Cancer Girl @cancergirl730 @dtayl @deanaruston @yacancercanada @yaccmom But what about those of us who aren't in Canada? #AYACSM |
| Emily K. Drake @EK_Drake RT @dtayl: @deanaruston Want to note that this is a great privilege that I can do this. Not everyone can. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston @TeamShan Hi Lorna!! Thanks so much for joining us tonight! I'll never ever forget how you came to present to my Health Sciences class at Western and not long after, I joined the AYA cancer family! AYA Cancer can happen to anyone! #AYACSM |
| Emily K. Drake @EK_Drake @KimMillerPhD @deanaruston It is so funny in the professional space because we are often made to feel like we shouldn't let this affect us. Like we aren't human and like being a human doesn't come first for us before our professional lives #AYACSM |
| Pat Taylor @PatTaylorCR @deanaruston @EK_Drake Glad to bring the “end-of-life” and after conversation out of the shadows. Thank you. #ayacsm |
| Emily K. Drake @EK_Drake RT @dtayl: @deanaruston @yacancercanada I think @yacancercanada does a great job with this. I’ll never forget my first email. I really think @yaccmom is incredible for the emotional labour she pours into those emails. #AYACSM |
| Cancer Girl @cancergirl730 RT @EK_Drake: @KimMillerPhD @deanaruston It is so funny in the professional space because we are often made to feel like we shouldn't let this affect us. Like we aren't human and like being a human doesn't come first for us before our professional lives #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan @deanaruston Not to me, but I am old school. Used to find out in the newspaper!! #ayacsm |
| Pat Taylor @PatTaylorCR RT @EK_Drake: @KimMillerPhD @deanaruston It is so funny in the professional space because we are often made to feel like we shouldn't let this affect us. Like we aren't human and like being a human doesn't come first for us before our professional lives #AYACSM |
| Cancer Girl @cancergirl730 @EK_Drake @KimMillerPhD @deanaruston That has got to be difficult. I consider you a friend, so I can't imagine the challenge of distancing yourself on a professional level. #AYACSM |
| Dr. Perri Tutelman @DrPerriTutelman @KimMillerPhD @deanaruston Agreed. Sometimes it feels like you know them more than you actually do. So the loss feels greater. #AYACSM |
| Emily K. Drake @EK_Drake @cancergirl730 @dtayl @deanaruston @yacancercanada @yaccmom That's a good point - do you belong to any programming in the US that addresses loss? #AYACSM |
| Emily K. Drake @EK_Drake RT @PatTaylorCR: @deanaruston @EK_Drake Glad to bring the “end-of-life” and after conversation out of the shadows. Thank you. #ayacsm |
| Team Shan (Lorna Larsen) @TeamShan RT @deanaruston: @TeamShan Hi Lorna!! Thanks so much for joining us tonight! I'll never ever forget how you came to present to my Health Sciences class at Western and not long after, I joined the AYA cancer family! AYA Cancer can happen to anyone! #AYACSM |
| Cancer Girl @cancergirl730 @deanaruston @EK_Drake @ukfann00 @StupidCancer You can afford manicures? I'm jealous! #DIYBaby #AYACSM |
| Nina Martínez @marganina I was present near the end of my two friends' lives with Kaposi's sarcoma. It was infuriating to see ppl on SM prematurely announce an end to their lives. #AYACSM Also frustrating that ppl just said it was cancer, when it's a highly stigmatized kind. |
| Pat Taylor @PatTaylorCR @EK_Drake @KimMillerPhD @deanaruston I so agree with you, @EK_Drake #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD @cancergirl730 @PerriTutelman @deanaruston I’m so sorry too. The “this is our lives” statement is tough. It is not something anyone should have to get used to. #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan @deanaruston My pleasure and thank you! I will never forget you and the other young adults from Western who have connected with me again after my Health Sciences presentations! #ayacsm |
| Emily K. Drake @EK_Drake @cancergirl730 @KimMillerPhD @deanaruston That's how we are made to feel sometimes, but that's not what I do. Boundaries are important, but the aforementioned tweet is an old school view that doesn't promote self care #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston @dtayl @yacancercanada @yaccmom 1000%. These emails really walk with us through this news, whether the persons death was imminent or unexpected. #AYACSM |
| Emily K. Drake @EK_Drake RT @PerriTutelman: @KimMillerPhD @deanaruston Agreed. Sometimes it feels like you know them more than you actually do. So the loss feels greater. #AYACSM |
| Cancer Girl @cancergirl730 RT @KimMillerPhD: @cancergirl730 @PerriTutelman @deanaruston I’m so sorry too. The “this is our lives” statement is tough. It is not something anyone should have to get used to. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: @cancergirl730 @KimMillerPhD @PerriTutelman @deanaruston For me - I talked about it because I felt no one else was. I've sought out others who I feel safe/comfortable talking to. It's absolutely unjust that young people are dying of cancer. The stories and memories I have are what motivate me to continue with this work #AYACSM |
| Emily K. Drake @EK_Drake RT @marganina: I was present near the end of my two friends' lives with Kaposi's sarcoma. It was infuriating to see ppl on SM prematurely announce an end to their lives. #AYACSM Also frustrating that ppl just said it was cancer, when it's a highly stigmatized kind. |
| Cancer Girl @cancergirl730 RT @EK_Drake: @cancergirl730 @KimMillerPhD @deanaruston That's how we are made to feel sometimes, but that's not what I do. Boundaries are important, but the aforementioned tweet is an old school view that doesn't promote self care #AYACSM |
| Pat Taylor @PatTaylorCR RT @EK_Drake: @cancergirl730 @KimMillerPhD @deanaruston That's how we are made to feel sometimes, but that's not what I do. Boundaries are important, but the aforementioned tweet is an old school view that doesn't promote self care #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @PatTaylorCR: @deanaruston @EK_Drake Glad to bring the “end-of-life” and after conversation out of the shadows. Thank you. #ayacsm |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: @cancergirl730 @PerriTutelman @deanaruston I’m so sorry too. The “this is our lives” statement is tough. It is not something anyone should have to get used to. #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan RT @EK_Drake: @cancergirl730 @KimMillerPhD @PerriTutelman @deanaruston For me - I talked about it because I felt no one else was. I've sought out others who I feel safe/comfortable talking to. It's absolutely unjust that young people are dying of cancer. The stories and memories I have are what motivate me to continue with this work #AYACSM |
| Emily K. Drake @EK_Drake RT @TeamShan: @deanaruston My pleasure and thank you! I will never forget you and the other young adults from Western who have connected with me again after my Health Sciences presentations! #ayacsm |
| Emily K. Drake @EK_Drake RT @deanaruston: @dtayl @yacancercanada @yaccmom 1000%. These emails really walk with us through this news, whether the persons death was imminent or unexpected. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: @KimMillerPhD @deanaruston It is so funny in the professional space because we are often made to feel like we shouldn't let this affect us. Like we aren't human and like being a human doesn't come first for us before our professional lives #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan @EK_Drake @cancergirl730 @KimMillerPhD @PerriTutelman @deanaruston Thank you 💕 #ayacsm |
| Pat Taylor @PatTaylorCR RT @deanaruston: @dtayl @yacancercanada @yaccmom 1000%. These emails really walk with us through this news, whether the persons death was imminent or unexpected. #AYACSM |
| Emily K. Drake @EK_Drake We wanted to mention that there are some resources @VirtualHospice too if people are interested re: grief and bereavement #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @EK_Drake @cancergirl730 @deanaruston I agree @EK_Drake that it’s an old school view. Boundaries are important but our relationships and connections are solid, and real. #AYACSM |
| Cancer Girl @cancergirl730 RT @KimMillerPhD: @EK_Drake @cancergirl730 @deanaruston I agree @EK_Drake that it’s an old school view. Boundaries are important but our relationships and connections are solid, and real. #AYACSM |
| Renee Kaiman @MSCMommyLife @EK_Drake @VirtualHospice I’ve watched some of the videos and they are great. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston @cancergirl730 @EK_Drake @ukfann00 @StupidCancer They're part of my self care! ☺️ Freshly painted nails however they're done are always nice! #AYACSM |
| Nina Martínez @marganina A2: On the flip side, SM helped a friend of my original intended kidney recipient contact me to inform me of his passing (he had #T1D and HIV, died from kidney failure). So I have had mixed results with SM & such announcements #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @KimMillerPhD: @cancergirl730 @PerriTutelman @deanaruston I’m so sorry too. The “this is our lives” statement is tough. It is not something anyone should have to get used to. #AYACSM |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: @EK_Drake @cancergirl730 @deanaruston I agree @EK_Drake that it’s an old school view. Boundaries are important but our relationships and connections are solid, and real. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @TeamShan: @deanaruston My pleasure and thank you! I will never forget you and the other young adults from Western who have connected with me again after my Health Sciences presentations! #ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @KimMillerPhD: @EK_Drake @cancergirl730 @deanaruston I agree @EK_Drake that it’s an old school view. Boundaries are important but our relationships and connections are solid, and real. #AYACSM |
| Emily K. Drake @EK_Drake RT @MSCMommyLife: @EK_Drake @VirtualHospice I’ve watched some of the videos and they are great. #AYACSM |
| Cancer Girl @cancergirl730 @deanaruston @EK_Drake @ukfann00 @StupidCancer In my case, it is a sign of wedding season. ;-) I haven't had a real manicure in 10 + years. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Q3: What do you think the community could do differently to address this? #AYACSM |
| Emily K. Drake @EK_Drake RT @marganina: A2: A2: On the flip side, SM helped a friend of my original intended kidney recipient contact me to inform me of his passing (he had #T1D and HIV, died from kidney failure). So I have had mixed results with SM & such announcements #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @marganina: I was present near the end of my two friends' lives with Kaposi's sarcoma. It was infuriating to see ppl on SM prematurely announce an end to their lives. #AYACSM Also frustrating that ppl just said it was cancer, when it's a highly stigmatized kind. |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @marganina: A2: A2: On the flip side, SM helped a friend of my original intended kidney recipient contact me to inform me of his passing (he had #T1D and HIV, died from kidney failure). So I have had mixed results with SM & such announcements #AYACSM |
| Cancer Girl @cancergirl730 @deanaruston A3. IDK. My org does a yearly memorial slideshow, but that doesn't work in the global AYA community. #AYACSM |
| Pat Taylor @PatTaylorCR RT @EK_Drake: We wanted to mention that there are some resources @VirtualHospice too if people are interested re: We wanted to mention that there are some resources @VirtualHospice too if people are interested re: grief and bereavement #AYACSM |
| Emily K. Drake @EK_Drake RT @deanaruston: Q3: Q3: What do you think the community could do differently to address this? #AYACSM |
| Pat Taylor @PatTaylorCR RT @deanaruston: Q3: Q3: What do you think the community could do differently to address this? #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan @deanaruston A3 The community needs to support the efforts being made to address palliative care needs for young adults. I have advocated for a few years now to fill this gap in care and would love to see more support for young adults, their families and friends #ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston A3: Trigger/ Content warnings might be nice if someone is sharing that someone has died- so you can be aware of what you may read, or you can decide to come back to it later (whether from the #AYACSM community or beyond). |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @TeamShan: @deanaruston A3 The community needs to support the efforts being made to address palliative care needs for young adults. I have advocated for a few years now to fill this gap in care and would love to see more support for young adults, their families and friends #ayacsm |
| Pat Taylor @PatTaylorCR RT @TeamShan: @deanaruston A3 The community needs to support the efforts being made to address palliative care needs for young adults. I have advocated for a few years now to fill this gap in care and would love to see more support for young adults, their families and friends #ayacsm |
| Renee Kaiman @MSCMommyLife @deanaruston A3- it’s challenging because the community continually changes with new people being diagnosed and others passing away. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston A3: I think we also need to keep talking about it. That this does happen and that some people in the community, unfortunately do die. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @MSCMommyLife: @deanaruston A3- it’s challenging because the community continually changes with new people being diagnosed and others passing away. #AYACSM |
| Renee Kaiman @MSCMommyLife @TeamShan @deanaruston Yes! #AYACSM |
| Emily K. Drake @EK_Drake RT @TeamShan: @deanaruston A3 The community needs to support the efforts being made to address palliative care needs for young adults. I have advocated for a few years now to fill this gap in care and would love to see more support for young adults, their families and friends #ayacsm |
| Dr. Perri Tutelman @DrPerriTutelman @EK_Drake @KimMillerPhD @deanaruston I wonder if this is changing a bit ... in the clinical psychology space we do acknowledge our own emotions and many believe it is important for therapeutic relationships to share some sadness in these circumstances #AYACSM |
| Emily K. Drake @EK_Drake RT @deanaruston: A3: A3: Trigger/ Content warnings might be nice if someone is sharing that someone has died- so you can be aware of what you may read, or you can decide to come back to it later (whether from the #AYACSM community or beyond). |
| Pat Taylor @PatTaylorCR @TeamShan @deanaruston A3: I agree with you, @TeamShan Thank you for doing the work to improve on this messaging. #ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @PerriTutelman: @EK_Drake @KimMillerPhD @deanaruston I wonder if this is changing a bit ... in the clinical psychology space we do acknowledge our own emotions and many believe it is important for therapeutic relationships to share some sadness in these circumstances #AYACSM |
| Dani Taylor (She/Her) @danimarietaylor @deanaruston I think developing community resources around grief is important. Recognition as well. How does the community practice legacy after a loss? #AYACSM |
| Emily K. Drake @EK_Drake RT @deanaruston: A3: A3: I think we also need to keep talking about it. That this does happen and that some people in the community, unfortunately do die. #AYACSM |
| Pat Taylor @PatTaylorCR RT @deanaruston: A3: A3: Trigger/ Content warnings might be nice if someone is sharing that someone has died- so you can be aware of what you may read, or you can decide to come back to it later (whether from the #AYACSM community or beyond). |
| Cancer Girl @cancergirl730 RT @PerriTutelman: @EK_Drake @KimMillerPhD @deanaruston I wonder if this is changing a bit ... in the clinical psychology space we do acknowledge our own emotions and many believe it is important for therapeutic relationships to share some sadness in these circumstances #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @dtayl: @deanaruston I think developing community resources around grief is important. Recognition as well. How does the community practice legacy after a loss? #AYACSM |
| Dr. Perri Tutelman @DrPerriTutelman @deanaruston That's true! And could be done in thread form #AYACSM |
| Nina Martínez @marganina RT @TeamShan: @deanaruston A3 The community needs to support the efforts being made to address palliative care needs for young adults. I have advocated for a few years now to fill this gap in care and would love to see more support for young adults, their families and friends #ayacsm |
| Team Shan (Lorna Larsen) @TeamShan @deanaruston A3 I will be presenting at the national Hospice and Palliative Care conference on 3 palliative care projects I have been involved with at the national and provincial level. It will be the first time this young adults will be addressed #ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Q5: When you find out someone has died from the Adolescent & Young Adult Cancer community has died there are resources to reach out as you learn to cope with this news @yacancercanada is in Canada. What other resources are you aware of? #AYACSM |
| Pat Taylor @PatTaylorCR @deanaruston A3: It is good to remember that talking about death does not make it happen sooner. #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD @deanaruston A3: I agree very much with this. I think also from the research side we could represent this issue better than we do. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @KimMillerPhD: @deanaruston A3: @deanaruston A3: I agree very much with this. I think also from the research side we could represent this issue better than we do. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @PatTaylorCR: @deanaruston A3: @deanaruston A3: It is good to remember that talking about death does not make it happen sooner. #ayacsm |
| Pat Taylor @PatTaylorCR RT @TeamShan: @deanaruston A3 I will be presenting at the national Hospice and Palliative Care conference on 3 palliative care projects I have been involved with at the national and provincial level. It will be the first time this young adults will be addressed #ayacsm |
| Emily K. Drake @EK_Drake @PerriTutelman @KimMillerPhD @deanaruston I'd say while that may hold true for psychologists, most other people on the team have very little professional training in dealing with death, grief and bereavement #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: @PerriTutelman @KimMillerPhD @deanaruston I'd say while that may hold true for psychologists, most other people on the team have very little professional training in dealing with death, grief and bereavement #AYACSM |
 | Lara Davis @DrLaraDavis RT @immunosarc: interesting @jalivingston_md : ASCO says use #SCMSM for #sarcoma during #ASCO19. Really?? sounds like: #worsthashtagever Looks like only @VivekSubbiah got the memo Suspect we will use both sarcoma #'s. Soon will have as many #'s as we have subtypes. #onepercentofallhashtags |
| Emily K. Drake @EK_Drake RT @PatTaylorCR: @deanaruston A3: @deanaruston A3: It is good to remember that talking about death does not make it happen sooner. #ayacsm |
| Emily K. Drake @EK_Drake RT @deanaruston: Q5: Q5: When you find out someone has died from the Adolescent & Young Adult Cancer community has died there are resources to reach out as you learn to cope with this news @yacancercanada is in Canada. What other resources are you aware of? #AYACSM |
| Pat Taylor @PatTaylorCR @TeamShan @deanaruston A3: Thank you, Lorna. I am so grateful for your willingness to speak out on these issues. ##ayacsm |
| Emily K. Drake @EK_Drake RT @dtayl: @deanaruston I think developing community resources around grief is important. Recognition as well. How does the community practice legacy after a loss? #AYACSM |
| Pat Taylor @PatTaylorCR RT @KimMillerPhD: @deanaruston A3: @deanaruston A3: I agree very much with this. I think also from the research side we could represent this issue better than we do. #AYACSM |
| Pat Taylor @PatTaylorCR RT @deanaruston: Q5: Q5: When you find out someone has died from the Adolescent & Young Adult Cancer community has died there are resources to reach out as you learn to cope with this news @yacancercanada is in Canada. What other resources are you aware of? #AYACSM |
| Nina Martínez @marganina @EK_Drake @KimMillerPhD @deanaruston I remember when my first friend passed away from Kaposi's sarcoma. People I worked with lost many to it to the 1980s, so they were unfazed with my loss (first in 2009 & again in 2017). They told me to get other friends. 😨 Ugh. #AYACSM |
| Dr. Perri Tutelman @DrPerriTutelman @EK_Drake @KimMillerPhD @deanaruston I think this speaks to the importance of integrated interdisciplinary teams. MH clinicians often support other members of the team (beyond the patient/family) with deaths or other difficult situations #AYACSM |
| Emily K. Drake @EK_Drake @KimMillerPhD @deanaruston This influenced my doctoral work #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @marganina: @EK_Drake @KimMillerPhD @deanaruston I remember when my first friend passed away from Kaposi's sarcoma. People I worked with lost many to it to the 1980s, so they were unfazed with my loss (first in 2009 & again in 2017). They told me to get other friends. 😨 Ugh. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @PerriTutelman: @EK_Drake @KimMillerPhD @deanaruston I think this speaks to the importance of integrated interdisciplinary teams. MH clinicians often support other members of the team (beyond the patient/family) with deaths or other difficult situations #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @PerriTutelman @deanaruston @EK_Drake I think it is @PerriTutelman! Also when patients and survivors are full partners in research and they die, it is exactly like a colleague/friend dying. We don’t enforce boundaries there. #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan @deanaruston @yacancercanada A5 I think @virtualhospice plays a role in supporting AYA cancer family and friends. There may be a need for professional grief supports as well #ayacsm |
| Team Shan (Lorna Larsen) @TeamShan RT @PerriTutelman: @EK_Drake @KimMillerPhD @deanaruston I think this speaks to the importance of integrated interdisciplinary teams. MH clinicians often support other members of the team (beyond the patient/family) with deaths or other difficult situations #AYACSM |
| Cancer Girl @cancergirl730 @EK_Drake @KimMillerPhD @deanaruston Maybe we should consider a memorial #AYACSM chat... Where we can honor those we lost. |
| Pat Taylor @PatTaylorCR @deanaruston @yacancercanada A5: Callanish in Vancouver is a good resource for grief. #ayacsm |
| Team Shan (Lorna Larsen) @TeamShan @PerriTutelman @deanaruston @EK_Drake @KimMillerPhD Yes!! #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD @TeamShan @deanaruston Excellent to hear! This is important work and advocacy. #AYACSM |
| Pat Taylor @PatTaylorCR RT @EK_Drake: @PerriTutelman @KimMillerPhD @deanaruston I'd say while that may hold true for psychologists, most other people on the team have very little professional training in dealing with death, grief and bereavement #AYACSM |
| Emily K. Drake @EK_Drake RT @marganina: @EK_Drake @KimMillerPhD @deanaruston I remember when my first friend passed away from Kaposi's sarcoma. People I worked with lost many to it to the 1980s, so they were unfazed with my loss (first in 2009 & again in 2017). They told me to get other friends. 😨 Ugh. #AYACSM |
| Pat Taylor @PatTaylorCR RT @PerriTutelman: @EK_Drake @KimMillerPhD @deanaruston I think this speaks to the importance of integrated interdisciplinary teams. MH clinicians often support other members of the team (beyond the patient/family) with deaths or other difficult situations #AYACSM |
| Nina Martínez @marganina RT @dtayl: @deanaruston I think developing community resources around grief is important. Recognition as well. How does the community practice legacy after a loss? #AYACSM |
| Pat Taylor @PatTaylorCR RT @TeamShan: @deanaruston @yacancercanada A5 I think @virtualhospice plays a role in supporting AYA cancer family and friends. There may be a need for professional grief supports as well #ayacsm |
| Team Shan (Lorna Larsen) @TeamShan RT @PatTaylorCR: @TeamShan @deanaruston A3: @TeamShan @deanaruston A3: I agree with you, @TeamShan Thank you for doing the work to improve on this messaging. #ayacsm |
| Team Shan (Lorna Larsen) @TeamShan @PatTaylorCR @deanaruston Thank you! #ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston A5: There's also @KidsHelpPhone if you're in Canada (which by the way they don't turn people away)- they also are here to support youth & young adults with any issue. They now offer texting as well just text CONNECT to 686868 #AYACSM |
| Renee Kaiman @MSCMommyLife @marganina @EK_Drake @KimMillerPhD @deanaruston Ugh. I’m sorry. That’s such a hurtful thing to say. Just because someone is unfazed doesn’t mean they should discount your loss and feelings #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan RT @KimMillerPhD: @TeamShan @deanaruston Excellent to hear! This is important work and advocacy. #AYACSM |
| Pat Taylor @PatTaylorCR RT @deanaruston: A5: A5: There's also @KidsHelpPhone if you're in Canada (which by the way they don't turn people away)- they also are here to support youth & young adults with any issue. They now offer texting as well just text CONNECT to 686868 #AYACSM |
| Pat Taylor @PatTaylorCR RT @MSCMommyLife: @marganina @EK_Drake @KimMillerPhD @deanaruston Ugh. I’m sorry. That’s such a hurtful thing to say. Just because someone is unfazed doesn’t mean they should discount your loss and feelings #AYACSM |
| Emily K. Drake @EK_Drake @PerriTutelman @KimMillerPhD @deanaruston I think this is a good direction, but I haven't seen it in practice. I would be interested if any other non MH team members have experienced this, particularly in adult care. #StudyIdea #AYACSM |
| Dani Taylor (She/Her) @danimarietaylor @PerriTutelman @EK_Drake @KimMillerPhD @deanaruston https://t.co/Vi0aUTadns I’m sure many have seen this before, but worth reposting. #AYACSM |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: @PerriTutelman @deanaruston @EK_Drake I think it is @PerriTutelman! Also when patients and survivors are full partners in research and they die, it is exactly like a colleague/friend dying. We don’t enforce boundaries there. #AYACSM |
| Cancer Girl @cancergirl730 @deanaruston @yacancercanada I must have missed Q4. :( #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Many larger urban centres in Canada has @WellspringCAN centres as well though they are not AYA Cancer specific. https://t.co/kBDrKA8vWZ #AYACSM |
| Emily K. Drake @EK_Drake @cancergirl730 @KimMillerPhD @deanaruston That's a great idea!! Thank you #AYACSM |
| Emily K. Drake @EK_Drake Thank you for guest moderating tonight, @deanaruston ! Please tune in June 4, 2019 @ 8PM ET for the next #ayacsm chat! |
| Kimberly Miller, PhD @KimMillerPhD @dtayl @PerriTutelman @EK_Drake @deanaruston Thanks! Zero articles remaining so I’ll read it on another device ;) #AYACSM |
| Cancer Girl @cancergirl730 @EK_Drake @KimMillerPhD @deanaruston Of course! We could easily take over a whole day honoring all the people we have lost. #AYACSM |
| Pat Taylor @PatTaylorCR RT @deanaruston: Many larger urban centres in Canada has @WellspringCAN centres as well though they are not AYA Cancer specific. https://t.co/kBDrKA8vWZ #AYACSM |
| Emily K. Drake @EK_Drake RT @PatTaylorCR: @deanaruston @yacancercanada A5: @deanaruston @yacancercanada A5: Callanish in Vancouver is a good resource for grief. #ayacsm |
| Emily K. Drake @EK_Drake RT @deanaruston: A5: A5: There's also @KidsHelpPhone if you're in Canada (which by the way they don't turn people away)- they also are here to support youth & young adults with any issue. They now offer texting as well just text CONNECT to 686868 #AYACSM |
| Pat Taylor @PatTaylorCR RT @EK_Drake: Thank you for guest moderating tonight, @deanaruston ! Please tune in June 4, 2019 @ 8PM ET for the next #ayacsm chat! |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: Thank you for guest moderating tonight, @deanaruston ! Please tune in June 4, 2019 @ 8PM ET for the next #ayacsm chat! |
| Renee Kaiman @MSCMommyLife @EK_Drake @deanaruston Thanks for a great chat tonight #AYACSM |
| Dr. Perri Tutelman @DrPerriTutelman @EK_Drake @KimMillerPhD @deanaruston I know it is part of some palliative care teams' mandates. Though as we know, access to PC can be difficult/variable. #AYACSM |
| Emily K. Drake @EK_Drake RT @deanaruston: Many larger urban centres in Canada has @WellspringCAN centres as well though they are not AYA Cancer specific. https://t.co/kBDrKA8vWZ #AYACSM |
| Pat Taylor @PatTaylorCR @EK_Drake @deanaruston Yes. Thank you @deanaruston and @EK_Drake for this chat on grief. Good night. #ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston @MSCMommyLife @EK_Drake Thanks so much for coming, Renee! #AYACSM |
| Nina Martínez @marganina @EK_Drake @deanaruston @PerriTutelman @KimMillerPhD When @AbbyPrestin passed away, I was participating in a neuroHIV study at NIH. The first study visit after her death was awful (she also had been a pt there). I could barely get through the psych interview. That team was incredibly unhelpful 😒 #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan @deanaruston @KidsHelpPhone Final comment...grief support starts with appropriate palliative care support!! So important. Thank you to all participating in the tweet chat this evening 💕 #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD @marganina @EK_Drake @deanaruston @PerriTutelman @AbbyPrestin That’s awful. Not recognizing your loss? #AYACSM |
| Emily K. Drake @EK_Drake RT @TeamShan: @deanaruston @KidsHelpPhone Final comment...grief support starts with appropriate palliative care support!! So important. Thank you to all participating in the tweet chat this evening 💕 #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD @EK_Drake @deanaruston Thank you both for a great chat! ❤️❤️🙌 #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston @PatTaylorCR @EK_Drake Thanks for coming, Pat! Both your and Lorna's (@TeamShan) insight, voice and guidance as parents of those in the AYA cancer community is vital! Sara & Shan's legacies certainly live on! These ladies change lives! #AYACSM |
| Nina Martínez @marganina @MSCMommyLife @EK_Drake @KimMillerPhD @deanaruston Esp since it had been my first exp with death, period. That and the point of advances in HIV treatment is that I am not supposed to be burying friends who die of Kaposi's. Not in 2009, not in 2017, and not now #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @TeamShan: @deanaruston @KidsHelpPhone Final comment...grief support starts with appropriate palliative care support!! So important. Thank you to all participating in the tweet chat this evening 💕 #ayacsm |
| Nina Martínez @marganina RT @EK_Drake: Thank you for guest moderating tonight, @deanaruston ! Please tune in June 4, 2019 @ 8PM ET for the next #ayacsm chat! |
| Emily K. Drake @EK_Drake RT @deanaruston: @PatTaylorCR @EK_Drake Thanks for coming, Pat! Both your and Lorna's (@TeamShan) insight, voice and guidance as parents of those in the AYA cancer community is vital! Sara & Shan's legacies certainly live on! These ladies change lives! #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Thank you all for coming to tonight's chat on #Grief and #SocialMedia in the Adolescent and Young Adult Cancer community!! The next #AYACSM chat is June 4th, 2019 at 8 PM ET! |
| Cancer Girl @cancergirl730 RT @deanaruston: Thank you all for coming to tonight's chat on #Grief and #SocialMedia in the Adolescent and Young Adult Cancer community!! The next #AYACSM chat is June 4th, 2019 at 8 PM ET! |
 | Cancer Survivor Social Media @CancerSurvSM Great discussion on #AYACSM tonight. Please do check it out. |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @CancerSurvSM: Great discussion on #AYACSM tonight. Please do check it out. |
| Nina Martínez @marganina @KimMillerPhD @EK_Drake @deanaruston @PerriTutelman @AbbyPrestin I would say my loss was outside the purview of their research instrument. They later published a paper on HIV & PTSD, which prompted me to ask about that particular visit. They then acknowledged it as normal grief. #AYACSM |
| Cancer Girl @cancergirl730 RT @CancerSurvSM: Great discussion on #AYACSM tonight. Please do check it out. |
| Emily K. Drake @EK_Drake RT @deanaruston: Thank you all for coming to tonight's chat on #Grief and #SocialMedia in the Adolescent and Young Adult Cancer community!! The next #AYACSM chat is June 4th, 2019 at 8 PM ET! |
| Deana Ruston 🇨🇦 ♿️ @deanaruston @marganina @KimMillerPhD @EK_Drake @PerriTutelman @AbbyPrestin They could have at least connected you with some support I would think or at least offered to connect you? #AYACSM |
#ayacsm content from Twitter.