#BTSM Transcript
Healthcare social media transcript of the #BTSM hashtag.
– ().
See #BTSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | 🧠Julia Robertson @Ailuj_Nostrebor It is about to get #BTSM busy in here! |
 | NCI Cancer Stats @NCICancerStats In 2016, an estimated 165,813 people were living with brain and other nervous system cancers in the United States. Check out more stats at: https://t.co/L2LuXfQkWz #BTSM https://t.co/9cRODE10XF |
 | #BTSM chat @BTSMchat Welcome to #BTSM chat! Please remember to use the hashtag (#BTSM) in order to take part in tonight’s conversation. Tonight we're talking about Loneliness. https://t.co/Cl3615nzKD |
 | Alireza Mansouri @DrAMansouri Hi everyone, my first time on #BTSM tweet chat and I am looking forward to learning about ways in which as a #neurosurgeon I can help individuals with brain tumors, and their care partners, cope with #loneliness |
| #BTSM chat @BTSMchat Let’s start w/intro’s while we wait for the chat to start! Who are you? Why are you here? Tweet #BTSM if you’re only here to listen. Welcome everyone! |
| #BTSM chat @BTSMchat Clinical, academic, research, or industry professionals: Feel free to share credentials and affiliations. Thanks for joining! #BTSM |
 | Liz Salmi @TheLizArmy @DrAMansouri Welcome, Dr. Mansouri! Great to have you joining us tonight. #btsm |
 | Matt Cotcher @MLCotcher Hi, y'all - glad everyone is here. Matt from Atlanta, GA - 2x ependymoma survivor (2007 & 2017). Lots of deficits but I choose not to focus on them - grateful for the folk at @CERNfoundation & @PiedmontHealth. #BTSM |
 | Sarah Johnson @SarahJ0hnson RT @NCICancerStats: In 2016, an estimated 165,813 people were living with brain and other nervous system cancers in the United States. Check out more stats at: https://t.co/L2LuXfQkWz #BTSM https://t.co/9cRODE10XF |
 | St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat Hey, guys. You know me. Unless you don’t yet. Molly. Astro3. Deep left temporal lobe. Diagnosed in October 2016. Currently stable. Metro-Detroit. Why am I here? I like to talk the feels out. #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat /Intro Julia, Brisbane Australia. Diagnosed 2003 atypical colloid cyst, surgery 2011. Pt and researcher #BTSM |
 | Sarah @SazrahB Re: Loneliness for brain tumor patients/loved ones. Hot tip: ask your care team (MD/APN/PA/RN) to introduce you to someone else they take care of who has what you have/is the same age/has the same prognosis. In person meet ups are VERY helpful. #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @MLCotcher @CERNfoundation @PiedmontHealth Matt, you should meet @tiffnotes! #ependymoma #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat Hello, Liz here. Sacramento, CA. Living with grade II astrocytoma. Excited to work on this topic with @lisaoleary524. I'm running the @BTSMchat account tonight. Outside of brain tumors my interests include: cats, learning Japanese, medical informatics & palliative care. #btsm |
| #BTSM chat @BTSMchat PUBLIC SERVICE ANNOUNCEMENT: #BTSM (brain tumor social media) is a patient and care partner-run, grassroots Twitter community and is not owned by any organization. If you are here just to listen, please tweet “#BTSM” so we know you’re in the audience. |
 | Erica Robinson @eleighrobs @BTSMchat When I saw tonight's subject, I remembered this photo from the Giving Tuesday @NBTStweets campaign a few years ago. Erica here. @NBTStweets @NewEnglandNBTS advocate, team captain and survivor. #BTSM https://t.co/iH5tdjTknr |
 | Jared Rubenstein, MD @DrJRubenstein @BTSMchat Hi all! Jared here, pediatric palliative care doc. We see loneliness a lot in our adolescent population and I’m hoping to learn from you all. #btsm |
| Liz Salmi @TheLizArmy @SazrahB This is a great tip already, thanks Sarah! #btsm |
| #BTSM chat @BTSMchat While we are waiting for everyone to join… Is anyone recognizing a milestone this month? #BTSM |
| #BTSM chat @BTSMchat We want to take a moment and express our deepest condolences to the family and friends of the amazing @stevenkeating. Learn about Steven’s legacy at https://t.co/cyAoa8i0VX. #BTSM |
 | The Broach Foundation for Brain Cancer Research @broachfdn #btsm |
| Liz Salmi @TheLizArmy @DrJRubenstein @BTSMchat Great to see you here, thanks for joining! We have a lot of long-term pediatric brain tumor survivors here in our crew. #btsm |
 | Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat Hi everyone! 🙋🏻♀️Neuro-onc from Charlotte, NC. @BTSMchat #btsm |
 | Charlie Blotner @CBlotner_ @BTSMchat Hi folks! Charlie in Seattle, here. Currently 6+ years out from an awake cranio for a grade II astrocytoma. Tonight's topic is so important for all perspectives tuning in. I'm also a hospice social worker 🙂. #btsm |
 | KateWhy @KattyBatty1 @BTSMchat #BTSM. Parent of teen who had his 1st surgery in 2013 for a juvenile pilocytic astrocytoma. Had a 2nd surgery last month. Listening tonight; hospital life is making us stir crazy... 😁 |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat This month marks 23 years married to my best friend #BTSM |
 | Existential Crisis Hotline 🏳️🌈 @EcrisisHotline RT @JeremyPivor: When diagnosed with a brain tumor at 12 y/o, not a lot of kids (or parents) understand what you’re going through. When you’re 27 with life-limiting cancer, not many people ‘get’ the existential crisis that is everyday life. It’s lonely. Let’s talk about it. Join the #btsm chat. |
| #BTSM chat @BTSMchat TONIGHT'S TOPIC! Tonight’s chat is focused on the topic of loneliness. Dealing with illness can be isolating, and brain tumors can be specifically isolating for both patients and care partners. #BTSM |
| #BTSM chat @BTSMchat Tonight’s chat is organized by themes. We will announce FOUR topics (T1, T2 etc). Please label your answers with T1, T2, etc to make transcript easier to follow. #BTSM About to post Topic T1… #BTSM |
 | Alex Kalogeropoulos @AkalStation @BTSMchat Name is Alex, my 28 y.o. wife is living with grade 2 Astro - tumor found Dec 2018 removed Jan 21st 2019. Wife works in the medical field as a nurse anesthetist #BTSM |
| Charlie Blotner @CBlotner_ @Lifeiskitsch @BTSMchat Did you say ~feels~?! Well then, you've come to the right place. 😎❤️🤜🤛 #btsm |
| #BTSM chat @BTSMchat T1: Facing a brain tumor can feel physically, mentally and emotionally isolating for patients and care partners. Has your brain tumor experience ever manifested into loneliness? What did it look/feel like? #btsm |
 | Adam Marc (he/him) @adamhayden @DrJRubenstein @BTSMchat Thanks for all you’re doing to drive awareness around #pallcare #hpm #btsm |
 | Jeremy Pivor @JeremyPivor @BTSMchat Jeremy here. Diagnosed in 2004 w/ Oligo at 12y/o. Recurrence in 2014 & again in 2018. Trying to figure out how to live with life-limiting illness and like @Lifeiskitsch, I like to talk the feels out. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch Sidenote: anyone here know someone still alive-ing (adult) with medullablastoma? I have a friend who was diagnosed as a teen, but is now in her 30s. She is looking to connect with someone. I passed along @ImermanAngels, but if you know anyone... #BTSM |
| Erica Robinson @eleighrobs @adamhayden @BTSMchat @NBTStweets @NewEnglandNBTS @adamhayden GIF Master! #BTSM 💓 |
 | I Live Now Rachel 💎 @KickBrainTumors Hello everyone. I’m listening in👩🏽💻 #BTSM Excellent topic! https://t.co/ojRQQKN1HK |
| Sarah @SazrahB @adamhayden I can call the patient I have in mind and ask if they’d be willing to make contact and if they are, I give them the other patients info if they have also agreed. No names are spoken until all agree. #btsm #matchmaker |
 | Lisa O'Leary @lisaoleary524 Hi all - Lisa checking in from my ER hospital bed! Thanks to @CBlotner_ for stepping in for me tonight to help @TheLizArmy with this important topic. Will participates as much as I can! #BTSM |
| Liz Salmi @TheLizArmy @AkalStation @BTSMchat Thanks for joining us, Alex. 👋 to your wife. I was diagnosed with grade II astrocytoma at age 29... 11 years ago! My best wishes for her to turn 40. #btsm |
| Alireza Mansouri @DrAMansouri RT @Lifeiskitsch: Sidenote: Sidenote: anyone here know someone still alive-ing (adult) with medullablastoma? I have a friend who was diagnosed as a teen, but is now in her 30s. She is looking to connect with someone. I passed along @ImermanAngels, but if you know anyone... #BTSM |
| Erica Robinson @eleighrobs @lisaoleary524 @CBlotner_ @TheLizArmy I saw that! Feel better, friend. #BTSM |
| Erica Robinson @eleighrobs @adamhayden @CBlotner_ @BTSMchat You're on fire tonight @adamhayden #BTSM |
| Matt Cotcher @MLCotcher T1: For brain tumor patients & survivors “loneliness” is an all-too-real condition that stems from the trauma of having your head surgically opened. Others can sympathize but not truly understand the reality of having “normal” reset to something different. #BTSM |
| Jared Rubenstein, MD @DrJRubenstein @adamhayden @BTSMchat Thank you! One of the best things that has come from that work is the opportunity to connect with patients and others passionate about this work. So sorry to hear you’ve been having a rough week. #btsm |
| Lisa O'Leary @lisaoleary524 T1: when my late husband Patrick was receiving tx for #GBM it was incredibly isolating. No one knew how to help or relate and often they just stayed away. As a widow, similar experience only worse. I felt like some sort of parish that people avoided. Still do sometimes. #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T1/A1 At one point I was hemiplegic and largely spent my life in bed. #FOMO is real. My husband and children would come to visit me in bed but life went on outside my 4 walls and I not a part of it. #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat I can only speak from what pts/ loved ones tell me- so many feel lonely when they “look normal” months after dx but are not the same. It’s as if people “forget” and move on. #btsm @BTSMchat |
| Liz Salmi @TheLizArmy @BTSMchat T1: I remember feeling most lonely around 6 months to 2 years after diagnosis. Why? - Uncontrolled seizures prevented me from driving. I had no independence. - Oral chemo meant treatment was done at home and I had no one to talk to. #btsm |
| Alex Kalogeropoulos @AkalStation @TheLizArmy @BTSMchat #btsm |
| Charlie Blotner @CBlotner_ @AkalStation @BTSMchat We're so glad that you've found us and are tuning in tonight, Alex. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T1 Yes, but more because... I don’t feel like my life is on the same game module as my healthy friends. It’s just... not anymore. Not married, no children, creeping on 40, no career... oh. And brain cancer. And I like talking about stuff that makes people uncomfortable. 🤷♀️ #BTSM |
| Jeremy Pivor @JeremyPivor @MariahJaeee @BTSMchat I was 24 at the time of my first recurrence and I also reacted to my loneliness by isolating myself. It took a while for me to realize I needed to break down those walls and let people in. #btsm |
| Alex Kalogeropoulos @AkalStation @CBlotner_ @BTSMchat I’ve lurked over the last few months! 😅 #btsm |
| #BTSM chat @BTSMchat RT @MLCotcher: T1: T1: For brain tumor patients & survivors “loneliness” is an all-too-real condition that stems from the trauma of having your head surgically opened. Others can sympathize but not truly understand the reality of having “normal” reset to something different. #BTSM |
| #BTSM chat @BTSMchat RT @AshleySumrallMD: @BTSMchat I can only speak from what pts/ loved ones tell me- so many feel lonely when they “look normal” months after dx but are not the same. It’s as if people “forget” and move on. #btsm @BTSMchat |
| #BTSM chat @BTSMchat RT @TheLizArmy: @BTSMchat T1: @BTSMchat T1: I remember feeling most lonely around 6 months to 2 years after diagnosis. Why? - Uncontrolled seizures prevented me from driving. I had no independence. - Oral chemo meant treatment was done at home and I had no one to talk to. #btsm |
| #BTSM chat @BTSMchat RT @JeremyPivor: @MariahJaeee @BTSMchat I was 24 at the time of my first recurrence and I also reacted to my loneliness by isolating myself. It took a while for me to realize I needed to break down those walls and let people in. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T1: also I think having a rare illness can feel lonely bc they don’t know any other brain tumor pts... introducing pts/ families helps. Virtual support groups like those hosted by @adamhayden & @lisaoleary524 are great! @BTSMchat #btsm |
| Charlie Blotner @CBlotner_ @AkalStation @BTSMchat Even better 😂👍 #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T1 (part 2) my loneliness manifests in constant chatter. I must keep busy. I cannot stop. If I stop, I’m left with just my thoughts & fear. #btsm |
 | Roz mcmahon @rozzledozzel @BTSMchat T1 I think it can result in loneliness when others in your age group are doing other things that you struggle to do #btsm |
| Erica Robinson @eleighrobs @BTSMchat T1. No one could relate to the neurological symptoms I was having. When I found @NBTStweets it changed my life. A community full of people that could finish my sentences when I was trying to explain something I felt. #BTSM |
| Liz Salmi @TheLizArmy @Ailuj_Nostrebor @BTSMchat The months after diagnosis I felt the most FOMO. It felt like all of my peers were doing awesome things: getting married, starting new jobs, getting promotions... I couldn't drive. My lost my new job, lost my health insurance. I had no control over my situation. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T1. Heartbreaking but great input. Learning from all of you. @BTSMchat #btsm |
| #BTSM chat @BTSMchat Topic T2 is coming up… #BTSM |
| Erica Robinson @eleighrobs @AshleySumrallMD @BTSMchat @adamhayden @lisaoleary524 T1. Exactly! #BTSM |
| Jared Rubenstein, MD @DrJRubenstein @BTSMchat T1: Did your doctors and medical team do anything that helped (or made worse) your feelings of loneliness? #btsm |
| Liz Salmi @TheLizArmy @AkalStation @CBlotner_ @BTSMchat Everyone starts as a lurker! Now you're part of the crew. #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat T1. Loneliness takes many forms. Its shapeshifting nature found its way into my life by way of wanting to return to school quicker than my energy allowed, or needing to nap frequently. My individualized needs weren't generalizable to peers, which was demoralizing at first. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T1: how would you want your careteam to address this... or would you? #btsm |
 | Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat Sorry I‘m late to the party. Hello from NJ! I‘m Sabine, AA3 survivor of 5+ years. Check my profile for further info on what I do;-) #btsm |
| #BTSM chat @BTSMchat T2: Do you find that brain tumors (and other neurological conditions) make it especially difficult to connect with or find joy in connecting with others? Why or why not? #btsm |
| Erica Robinson @eleighrobs @SBergerBOSTON Hey! Come over to the @BTSMchat if you're up to it. #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: T1: T1: Facing a brain tumor can feel physically, mentally and emotionally isolating for patients and care partners. Has your brain tumor experience ever manifested into loneliness? What did it look/feel like? #btsm |
| Liz Salmi @TheLizArmy RT @rozzledozzel: @BTSMchat T1 I think it can result in loneliness when others in your age group are doing other things that you struggle to do #btsm |
| Roz mcmahon @rozzledozzel @BTSMchat T1 also loosing the structure of work and work friends/colleagues can be lonely, having to re build a new normal #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @TheLizArmy @BTSMchat Our friends couldn't relate/understand so they stopped coming #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ This! |
| Jeremy Pivor @JeremyPivor @BTSMchat I’m currently going through treatment every three weeks indefinitely. As a 27 y/o, even though I spend a lot of time with my partner, family, and friends, it’s hard to connect on what it’s like to have a life-limiting illness. I try to explain, but it can often feel lonely #btsm |
| Lisa O'Leary @lisaoleary524 @DrAMansouri I think the best thing you can do, like @AshleySumrallMD mentioned, is facilitate connections between patients / care partners and support communities like this one so people don’t feel so alone. They know that others are going through the same. #BTSM |
| Alex Kalogeropoulos @AkalStation @BTSMchat My wife feel like she can only plan her like in 3 month increments (aligning with her scan schedule) she feels like she experiences FOMO, but more like future FOMO, as in she feels like she can’t plan her for a future because she often times feels like she won’t have one. #btsm |
| Charlie Blotner @CBlotner_ @AshleySumrallMD @BTSMchat @adamhayden @lisaoleary524 Dr. Sumrall, I wonder if you could speak to any loneliness or isolation in your profession when friends (who may be teachers, lawyers, etc.) ask you how work is, or when you meet new people and they ask you what you do for work? #btsm |
| #BTSM chat @BTSMchat 👇@drjrubenstein just made up a new chat topic and we are here for this... #btsm |
| Charlie Blotner @CBlotner_ @LisaJaayyy @BTSMchat From the blog days and email, to facetime, to a travel meet-up in Seattle just last month! ❤️ #btsm |
| Alireza Mansouri @DrAMansouri @lisaoleary524 @AshleySumrallMD Is this best done at time of diagnosis or on postoperative follow up? #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T2 This is where I feel really lucky. Being such a chatty person online & having such a great @HenryFordNeuro crew— I never had to go through a hard time connecting. However, it’s the folks closest to me that seem to put glass barriers out. #BTSM |
| Liz Salmi @TheLizArmy @adamhayden While being at home is way better, I felt more lonely at home than at the hospital. At the hospital, people are always checking in on you. Also, the diagnosis and following treatment is a tornado. Being at the hospital seemed like the safest place to be! #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @CBlotner_ @BTSMchat @adamhayden @lisaoleary524 Gosh... I could talk at length. Sometimes I just say I’m an oncologist. At times, I can’t bear to go into the “I treat brain tumors” exchange. People think it is sad or that you are always down. #btsm |
| Lisa O'Leary @lisaoleary524 T2: absolutely. When we shared that Patrick had #GBM, people would try to relate and say “oh yeah, my so-and-so had X cancer.” It’s not to negate those experiences but they were completely different. I don’t know many, even in BT community, who had behavioral sx so severe #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: T2: T2: Do you find that brain tumors (and other neurological conditions) make it especially difficult to connect with or find joy in connecting with others? Why or why not? #btsm |
 | Sarah Funes Ozturk @SarahFunes No definitely not. As a pediatric patient there's not much to offer if your family doesn't have many resources and you are getting treatment because of medicaid. |
| #BTSM chat @BTSMchat RT @rozzledozzel: @BTSMchat T1 I think it can result in loneliness when others in your age group are doing other things that you struggle to do #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T2/A Because brain tumours are invisible from the outside, people find it hard to understand that while I 'looked okay' I couldn't keep up with them. I find a profound joy in connecting with other bt pts as there is so much that we don't have to explain to each other #BTSM |
| Roz mcmahon @rozzledozzel @BTSMchat T2 it’s difficult to connect with new and old friends, may look the same or ok on the surface but everything is different. #btsm |
| Roz mcmahon @rozzledozzel @LisaJaayyy @BTSMchat So true, it’s really hard to plan etc #btsm |
| Erica Robinson @eleighrobs @BTSMchat T2. I typically find the most joy is when I am connecting with others in our community. Whether it's a reunion at a @NBTStweets event, or meeting someone new that's been effected by a brain tumor, I am in my zone when we're working together. #BTSM |
| Alireza Mansouri @DrAMansouri @TheLizArmy @adamhayden I often struggle with the number of visits required for a clinical trial. Do you think, within reason, these may actually have therapeutic value? #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @AshleySumrallMD @BTSMchat Helping pts to connect with other pts in a supportive environment is r4eally helpful for some #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @CBlotner_ @BTSMchat @adamhayden @lisaoleary524 Ppl also don’t understand the true honor & privilege of working w brain tumor pts. Even w terminal pts, you do find joy every day. Encouragement, relationships, relieving suffering... all great parts of my work. #btsm |
| Sarah Funes Ozturk @SarahFunes Hi everyone sorry I'm late. I'm coming to you from Istanbul, Turkey where my jetlag is a real problem! #btsm |
| Lisa O'Leary @lisaoleary524 @DrAMansouri @AshleySumrallMD I would say both - but definitely reinforced post-op. At dx, often people can’t process much of what’s happening, so I would have liked to hear about it once we were heading into post-op tx std of care. #btsm |
| Jeremy Pivor @JeremyPivor @AshleySumrallMD @BTSMchat I think naming that loneliness and all the other emotions that come along with a brain tumor is normal may help. The “psychosocial” aspects of illness are often left for patients to navigate alone or with a therapist. Perhaps normalizing it immediately may help. #btsm |
| Liz Salmi @TheLizArmy @adamhayden @LisaJaayyy @BTSMchat I've been "straight edge" since high school, so not drinking has never been a barrier to connecting for me. Well, it can be, but I can't blame it on the brain tumor. 😂 #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @DrJRubenstein @BTSMchat Loneliness can be reduced by connecting people with peer supports #BTSM |
| #BTSM chat @BTSMchat If you are here tonight to just listen, please tweet “#BTSM” so we know you’re in the audience |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat Not within the bt community 😉#btsm |
| Sarah Funes Ozturk @SarahFunes I'm Sarah Funes. I was dx with a pilocytic astrocytoma grade 2 when I was 10 years old in 2002. #btsm |
| Charlie Blotner @CBlotner_ @AkalStation @BTSMchat I felt this way the first 2yrs after I had my resection. As time went on, I felt I could plan for 6 months out, 1 year out, and now looking to the future indefinitely. I hope that she will feel able to do that too, but also can understand if that feels too far for her. #btsm |
| The Broach Foundation for Brain Cancer Research @broachfdn #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat @HenryFordNeuro T2 part 2 My family really does not want to know about what brain tumor events/speeches/podcasts I am involved in... they do not want to know. And that makes me doubt myself & become extremely lonely. And miss my late mom even more. #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T2: I’m going to add that tumor location matters! Pts w frontal tumors may do or say things that may embarass their loved ones. Some pts may wander or need 24/7 supervision. It can break families. #btsm @BTSMchat |
| Liz Salmi @TheLizArmy @AkalStation @BTSMchat Yes! One of the main questions I still wrestle with is: - Should I save for retirement? or - Should I go on rad vacations every year because death is coming for me? My financial planner said to do a little of both. #btsm |
| #BTSM chat @BTSMchat RT @TheLizArmy: @Ailuj_Nostrebor @BTSMchat The months after diagnosis I felt the most FOMO. It felt like all of my peers were doing awesome things: getting married, starting new jobs, getting promotions... I couldn't drive. My lost my new job, lost my health insurance. I had no control over my situation. #btsm |
| #BTSM chat @BTSMchat Great ready--Topic T3 is coming up… #BTSM |
| #BTSM chat @BTSMchat RT @AshleySumrallMD: @BTSMchat T1: @BTSMchat T1: how would you want your careteam to address this... or would you? #btsm |
| #BTSM chat @BTSMchat RT @JeremyPivor: @BTSMchat I’m currently going through treatment every three weeks indefinitely. As a 27 y/o, even though I spend a lot of time with my partner, family, and friends, it’s hard to connect on what it’s like to have a life-limiting illness. I try to explain, but it can often feel lonely #btsm |
| #BTSM chat @BTSMchat RT @lisaoleary524: @DrAMansouri I think the best thing you can do, like @AshleySumrallMD mentioned, is facilitate connections between patients / care partners and support communities like this one so people don’t feel so alone. They know that others are going through the same. #BTSM |
| Erica Robinson @eleighrobs @Sabine_NJ @BTSMchat #BTSM https://t.co/GymKbmOlIj |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T2: Aphasia is so bad, too. If you can’t communicate, it is so isolating. My ❤️ breaks for those pts. #btsm |
 | Mariah Jae @MariahJaeee @BTSMchat T2: since diagnosis I feel like all my emotions are much more muted- I don’t feel immense joy or immense sadness I feel a lot of nothing or “small” versions of what emotions used to feel like in context with others and alone #BTSM |
| Sarah Funes Ozturk @SarahFunes As a child I found it incredibly difficult to connect with other kids going through treatment. I was always very open with my classmates and the kids in my school but it was very lonely. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T2: one more thing— many of my pts get “sensory overload” in public so they may avoid concerts, church, crowds. That is a big change. #btsm |
| Sarah Funes Ozturk @SarahFunes Absolutely! Then you add #disability and you just feel more lonely because other survivors weren't as affected physically. #btsm |
| Liz Salmi @TheLizArmy "Being such a chatty person online... never had to go through a hard time connecting." - @Lifeiskitsch BACK IN MY DAY there was no #BTSM, Facebook Groups hadn't started, and all the brain cancer patient blogs ended abruptly leaving me to wonder if the author had died... |
| #BTSM chat @BTSMchat T3: What helps you cope when you are feeling lonely? How do you find meaning and connection? #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @AshleySumrallMD @BTSMchat I had and still do have issues with sensory overload. Going to University some days is enormously challenging #BTSM |
| Charlie Blotner @CBlotner_ @lisaoleary524 @DrAMansouri @AshleySumrallMD I agree! Though, as someone whose job it has been in the past to facilitate these connections (in peds), I've found the referrals to disease-specific caregiver or patient matching programs isn't always formally available in-house bc of regulations or lack of fam opt-in. 😖#btsm |
| Liz Salmi @TheLizArmy @DrAMansouri @adamhayden Could a portion of the "required visits" be done virtually? Telemedicine? Teaching a care partner to conduct a simple evaluation right in front of the screen? #btsm |
| Jeremy Pivor @JeremyPivor @BTSMchat Among many other symptoms, I think fatigue (from the tumor, treatments, seizure meds, etc.) makes it difficult to connect. I often can’t go out, be fully present, or need to leave early. It’s hard to explain in social settings that I’m not just tired from school or work. #btsm |
| #BTSM chat @BTSMchat RT @AkalStation: @BTSMchat My wife feel like she can only plan her like in 3 month increments (aligning with her scan schedule) she feels like she experiences FOMO, but more like future FOMO, as in she feels like she can’t plan her for a future because she often times feels like she won’t have one. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @AshleySumrallMD @BTSMchat T2 My issues seem so minor that I start questioning if I should even consider myself sick at all... but then I see my MRIs, take a neuro psych, look at my diagnosis... it’s a tidy mess up there. A real mess. But a tidy one! #BTSM |
| Sarah Funes Ozturk @SarahFunes @AshleySumrallMD @BTSMchat T1 A1 I think it's especially important for care teams to address this in kids with cancer. I know in my personal experience they did not do a good job in 2002. I hope they have gotten better. #btsm |
| Liz Salmi @TheLizArmy @SarahFunes I hope you're having a wonderful time in Turkey! #btsm |
| Matt Cotcher @MLCotcher @AshleySumrallMD @BTSMchat #dysarthria supports this thought! 💯% #btsm |
| Sarah Funes Ozturk @SarahFunes @adamhayden yes! #btsm |
| #BTSM chat @BTSMchat RT @eleighrobs: @BTSMchat T2. I typically find the most joy is when I am connecting with others in our community. Whether it's a reunion at a @NBTStweets event, or meeting someone new that's been effected by a brain tumor, I am in my zone when we're working together. #BTSM |
| #BTSM chat @BTSMchat RT @AshleySumrallMD: @CBlotner_ @BTSMchat @adamhayden @lisaoleary524 Ppl also don’t understand the true honor & privilege of working w brain tumor pts. Even w terminal pts, you do find joy every day. Encouragement, relationships, relieving suffering... all great parts of my work. #btsm |
| #BTSM chat @BTSMchat RT @JeremyPivor: @AshleySumrallMD @BTSMchat I think naming that loneliness and all the other emotions that come along with a brain tumor is normal may help. The “psychosocial” aspects of illness are often left for patients to navigate alone or with a therapist. Perhaps normalizing it immediately may help. #btsm |
 | nopatchouliCNM @CNMnopatchouli @TheLizArmy @AkalStation @BTSMchat I’ve been struggling with the retirement savings issue for years now. I’m not saving for retirement because I figure if I don’t save I’ll live long enough to need it and if I save for retirement I won’t end up getting my money 💰. #btsm |
| Roz mcmahon @rozzledozzel @BTSMchat T3 connecting with other wives in Facebook or support groups who understand BC #btsm |
| Liz Salmi @TheLizArmy @JeremyPivor @AshleySumrallMD @BTSMchat It would have been nice to hear my neuro-onc proactively recommend speaking with a therapist about adjusting to the new normal and existential distress. Instead I got, "But you are doing so great!" I'm like, even rock stars can be hurting inside... #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T3/A Reaching out (even virtually) to other people on the same journey can help enormously. I have found meaning and connection through supporting other pt's and working with clinicians to improve the experience of other pts on this rollercoaster. #BTSM |
| I Live Now Rachel 💎 @KickBrainTumors T2: You can feel disconnection from others, if you feel they don’t have the same challenges as you. #BTSM |
| Sarah Funes Ozturk @SarahFunes @BTSMchat T3 A1 what I think might have been helpful to combs loneliness would have been more chats like this. Back in 2002 I had yahoo groups. Twitter didn't even exist yet. Hashtags weren't a way to search. #btsm |
| Jeremy Pivor @JeremyPivor @TheLizArmy @AshleySumrallMD @BTSMchat Yes! “Stable” doesn’t always mean I’m doing okay emotionally #btsm |
| Jared Rubenstein, MD @DrJRubenstein @SarahFunes @AshleySumrallMD @BTSMchat Sorry to hear your experience with this was not good. How do you wish your team had done things differently? #btsm |
| Alireza Mansouri @DrAMansouri @TheLizArmy @adamhayden I absolutely think we need better incorporation of virtual care and telemedicine!! #btsm Establishing regional research networks with standardized protocols will be critical toward this goal. |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T3 What helps me? Helping someone else. Sounds cheeseball-y, but it’s the truth. And trying new things. Getting my voice out there as an advocate. Gives me a way to feel like I matter & have purpose. It helps flip off my “poor me” switch. #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T2: When I was first diagnosed, I found it hard to connect with people living with other types of cancer. I once went to a general cancer support group and as soon as I started talking about seizures everyone else was like, "You poor, poor thing..." #btsm |
| Sarah Funes Ozturk @SarahFunes @TheLizArmy besides the jetlag it is wonderful to be back a year later. My partner and I went to our favorite neighborhood cafe and did grocery shopping. More exploring after I get over this jetlag! #btsm |
| Liz Salmi @TheLizArmy @Lifeiskitsch @BTSMchat @HenryFordNeuro Molly. I TOTALLY WANT TO KNOW about all of those rad things. Please keep sharing your awesomeness with ME and everyone else tweeting #BTSM. https://t.co/gzLgdxsnzS |
| Charlie Blotner @CBlotner_ @BTSMchat A2. I think the answer to this is of course individualized to everyone (as a person), but I also imagine the area of the brain impacted by the tumor would play a large role as well. How others respond to vision or mobility changes may be vastly different than needing naps. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @JeremyPivor @TheLizArmy @BTSMchat T2: i think it’s so hard for us too... doctors, nurses... we sometimes minimize sx’s bc we want it all to be better. #truth #btsm |
| #BTSM chat @BTSMchat Prepare yourself... Topic T4 is coming up… #BTSM |
| Liz Salmi @TheLizArmy RT @AshleySumrallMD: @BTSMchat T2: @BTSMchat T2: I’m going to add that tumor location matters! Pts w frontal tumors may do or say things that may embarass their loved ones. Some pts may wander or need 24/7 supervision. It can break families. #btsm @BTSMchat |
| Sarah Funes Ozturk @SarahFunes @JeremyPivor @TheLizArmy @AshleySumrallMD @BTSMchat sorry to report that really never goes away at least in my experience. 17 years and okay still isn't what it used to be. #btsm |
| #BTSM chat @BTSMchat RT @MariahJaeee: @BTSMchat T2: @BTSMchat T2: since diagnosis I feel like all my emotions are much more muted- I don’t feel immense joy or immense sadness I feel a lot of nothing or “small” versions of what emotions used to feel like in context with others and alone #BTSM |
| Liz Salmi @TheLizArmy SECOND MOST IMPORTANT THING YOU NEED TO KNOW ABOUT BRAIN TUMORS (that clinicians are usually afraid to talk about, and then patients and families are afraid to talk about... and then everything spirals out of control): #btsm #hpm #hapc |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: T3: T3: What helps you cope when you are feeling lonely? How do you find meaning and connection? #btsm |
| Charlie Blotner @CBlotner_ @AshleySumrallMD @BTSMchat @ me 😂 #btsm |
| Matt Cotcher @MLCotcher T3. I'm with @Lifeiskitsch - if we can't use our experience to help others, then what purpose does all this serve? #BTSM |
| Sarah Funes Ozturk @SarahFunes @DrAMansouri @TheLizArmy @adamhayden yes for sure. Now that the technology is available it needs to be FULLY utilized. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @BTSMchat And conversely, when my mom asking me if I felt as bad on chemo as she did, I would lie and say I did. I didn’t. Never. I couldn’t relate to her pancreatic cancer pain or ailments at all. I felt like my cancer was nothing by comparison. #BTSM |
| #BTSM chat @BTSMchat RT @TheLizArmy: "Being such a chatty person online... never had to go through a hard time connecting." - @Lifeiskitsch BACK IN MY DAY there was no #BTSM, Facebook Groups hadn't started, and all the brain cancer patient blogs ended abruptly leaving me to wonder if the author had died... |
| Sarah Funes Ozturk @SarahFunes @MLCotcher @Lifeiskitsch very true. #btsm |
| Liz Salmi @TheLizArmy @bermudababe76 @AshleySumrallMD @BTSMchat My heart is breaking for your mom (and you). That is a common feeling people with brain tumors have. CCing my friend @BethanyKwan who also lost her mother to glioblastoma. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch RT @MLCotcher: T3. I'm with @Lifeiskitsch - if we can't use our experience to help others, then what purpose does all this serve? #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T2: I try to teach families & caregivers how to “be there” for the pt. #btsm I love the work by @IamDavidKessler ex: https://t.co/fwf13pTt10 |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat T3: serving and helping others, sharing what I learned. Advocating for those who can‘t. #btsm |
| Liz Salmi @TheLizArmy @AshleySumrallMD @BTSMchat My dad had expressive aphasia due to GBM. It was a wild experience. I became a translator between him and the rest of the world. I knew what was going on as a patient, I knew how to explain brain cancer stuff to my family. #btsm |
| Jeremy Pivor @JeremyPivor @SarahFunes @TheLizArmy @AshleySumrallMD @BTSMchat @SarahFunes definitely. I try to use how I’m feeling about my “stability” as a barometer for whether I’m satisfied with how I’m living my life and staying true to my values. Repeating this process every 9 weeks though is exhausting #btsm |
| #BTSM chat @BTSMchat RT @SarahFunes: Absolutely! Then you add #disability and you just feel more lonely because other survivors weren't as affected physically. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy (( @fschmnn fschmnn definitely something we should learn more about for this week. Tumor region /effects/etc. #BTSM )) |
| #BTSM chat @BTSMchat Twitter Poll: When you are struggling and feeling extra lonely, what is your go-to source for feeling better? Tell us why you voted this way in a follow-up tweet! #btsm |
| Mariah Jae @MariahJaeee @BTSMchat T3: I’ll let y’all know if I ever find out (hahaha) #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @TheLizArmy Indeed. My fave examples for frontals are disinhibition & hypersexualism. We MUST tell/ warn caregivers about these symptoms. ppl don’t understand that pts cannot help it. #btsm |
| Sarah Funes Ozturk @SarahFunes A combination of the people closest to me, my dog, and Netflix. |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: Twitter Poll: Twitter Poll: When you are struggling and feeling extra lonely, what is your go-to source for feeling better? Tell us why you voted this way in a follow-up tweet! #btsm |
| #BTSM chat @BTSMchat @LizzyHedgehog We're glad that you've found #btsm and a sense of community here. Your story is yours to tell, and it's great that Sonic has allowed you to thrive along the way! |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy Seriously, if I didn’t have you guys... I don’t even know. I don’t know who I’d even be right now! ❤️😎🧠 #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @TheLizArmy @BTSMchat So frustrating. Pro tip for aphasia. When you become frustrated, just stop. Come back to it. Frustration makes word-finding impossible. #btsm |
| Jeremy Pivor @JeremyPivor @BTSMchat Going out in nature and reaching out to people to join me helps a lot. Also using my experiences to help others gives me some meaning and reassurance that what I’ve been through hasn’t been worthless. Being around people like you all who ‘get it’ is the best medicine. #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T3: The number 1 thing that makes me feel less lonely about brain tumor things is having found friends with brain tumors I now consider BFFs... and being part of a few group chats (text message groups) that we can text any time when we are feeling anything. #btsm |
| Matt Cotcher @MLCotcher @BTSMchat “Cookie Monster videos on YouTube” should have been a choice. #knowyouraudience #btsm |
| Liz Salmi @TheLizArmy @CNMnopatchouli @AkalStation @BTSMchat I see a future tweet chat about "financial planning strategies" for people with brain tumors. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @JeremyPivor @SarahFunes @TheLizArmy @BTSMchat T2: “Stable” is usually just the scan. IMO, pts are never stable emotionally & cognitively... there is always something “off.” Sometimes I have to drag it out of ppl at visits 🙂 #btsm |
| Sarah Funes Ozturk @SarahFunes Now that really is something I understand. I didn't have much of a plan as a teenager because I didn't think I'd have much of a future at all. I just kept making good choices in regards to my schooling in case I got one. Because of the decisions I made I'm now a college graduate. |
| Liz Salmi @TheLizArmy @SarahFunes @BTSMchat You just invoked Yahoo groups! @SarahFunes is the original. #btsm |
| #BTSM chat @BTSMchat Still more to go, but we are looking at the last 8 minutes! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @MakesItFancy @BTSMchat 🤗🤗🤗🤗 So many heart feels! ❤️❤️❤️ #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @AshleySumrallMD @JeremyPivor @SarahFunes @TheLizArmy @BTSMchat BT pt's can have a tendency to under-report issues #BTSM |
| Liz Salmi @TheLizArmy @bermudababe76 @BTSMchat If you are able to run for 2-3 hours, you are killing it! I can run for about 25 minutes. 😅 #btsm |
| Sarah Funes Ozturk @SarahFunes @TheLizArmy @CNMnopatchouli @AkalStation @BTSMchat that would be so helpful. I've got a lot to share of parents of kids with tumors. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T3. Love hearing these!! #btsm |
| Sarah Funes Ozturk @SarahFunes @TheLizArmy @SarahFunes @BTSMchat really really. #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat T3: I make sure that I call friends I haven't talked to in a while because of the joy that they bring me, or answer the emails that have piled up. Note for all of the overachievers out there: productivity is not self-worth. We are more than our cleared out inboxes. #btsm |
| Alireza Mansouri @DrAMansouri @TheLizArmy @CNMnopatchouli @AkalStation @BTSMchat As a Canadian graduate who will be working in the USA, I am curious to hear from #Canadians with brain tumors in regards to financial planning #btsm |
 | Mandy @pbgoldfish18 RT @HYHUTriangle: Powerful🙏🏽💛Fire fighter, Cody Mooney, 31, was escorted to donate organs after fighting his courageous battle against a brain tumor. He leaves behind a pregnant wife and four children. Mooney is still saving lives even after his last breath. #BTSM https://t.co/jCcD1fd0xs |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @Ailuj_Nostrebor @JeremyPivor @SarahFunes @TheLizArmy @BTSMchat Exactly. Always reminding my staff that pts may forget their sx’s. We have to be detectives!! #btsm |
| I Live Now Rachel 💎 @KickBrainTumors Focusing on the present moment, and all I am thankful for 💛 #BTSM |
| Alex Kalogeropoulos @AkalStation @TheLizArmy @CNMnopatchouli @BTSMchat I think this would be huge - right now my wife and I are kind of like YOLO when it comes to financial planning given her situation. #btsm |
| Jeremy Pivor @JeremyPivor @BTSMchat I often feel most lonely when I’ve been stuck inside. Getting out to nature clears my mind and lets me see the bigger picture. That’s often when I realize my loneliness is not impossible to break out of and I start thinking about solutions to feel better. Also DOGS! #btsm |
| #BTSM chat @BTSMchat Looking for more support? Tune in to Brain Tumor Support Conversations with @lisaoleary524 & @adamhayden on Sunday, August 18 at 4pPT/7pET. Patients, care partners, any brain tumor type, any stage of treatment can join! Register now at https://t.co/6jD7Tl1XoT. #BTSM https://t.co/nWfjmMRnwy |
| Liz Salmi @TheLizArmy @DrAMansouri @adamhayden Let's continue the conversation about this! Will you be at @NeuroOnc this year in Phoenix? #btsm |
 | Victoria @V_BBurns @TheLizArmy @BTSMchat @Lifeiskitsch Second this experience, exactly. I remember reading blog after blog and occasionally seeing the author’s final (death) post as the first one I see...and then going back in time to read their story from dx to death...2009 diagnosis was a very different time. #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @AshleySumrallMD @JeremyPivor @SarahFunes @TheLizArmy @BTSMchat digital diaries can be useful in those situations if pts are willing to use them. Some of us are resistant because we don't like to think that our bt's are effecting our memory #BTSM |
| nopatchouliCNM @CNMnopatchouli @AshleySumrallMD @TheLizArmy @BTSMchat My word finding ability decreases d/t stress or lack of sleep. Makes arguing with my spouse pointless because I can’t find the words I want to use. At work I’ve had to start pointing at objects I need the nurses to hand me when I’m in a stressful situation. Adaptation. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @adamhayden @Ailuj_Nostrebor @JeremyPivor @SarahFunes @TheLizArmy @BTSMchat If you look at our quality-of-life data from so many of our brain studies, most patients don’t fill them out. Sometimes family members do. I have patients that hate to fill them out because it’s a reminder of their deficits #btsm |
 | Kelsey Tainsh @KelseyTainsh RT @theABTA: The ABTA is thrilled to have two-time brain tumor survivor @KelseyTainsh as our keynote speaker for the 2019 National Conference. Want to know more or register for the conference, visit https://t.co/nEE820GE0f #BTSM #braintumors https://t.co/KQln2R93vw |
| Matt Cotcher @MLCotcher “Your greatest danger is letting the urgent things crowd out the important.” - Charles Hummel |
| Liz Salmi @TheLizArmy @MLCotcher @BTSMchat Please share links ASAP, k thx bye #btsm |
| Alireza Mansouri @DrAMansouri #btsm |
| Charlie Blotner @CBlotner_ @AshleySumrallMD @JeremyPivor @SarahFunes @TheLizArmy @BTSMchat Recognizing that is huge. I'm willing to bet that you don't inundate the social work dept with orders, because you're addressing such important topics head-on yourself, too. ❤️#btsm |
| Liz Salmi @TheLizArmy RT @AshleySumrallMD: @JeremyPivor @SarahFunes @TheLizArmy @BTSMchat T2: @JeremyPivor @SarahFunes @TheLizArmy @BTSMchat T2: “Stable” is usually just the scan. IMO, pts are never stable emotionally & cognitively... there is always something “off.” Sometimes I have to drag it out of ppl at visits 🙂 #btsm |
| #BTSM chat @BTSMchat RT @AshleySumrallMD: @JeremyPivor @SarahFunes @TheLizArmy @BTSMchat T2: @JeremyPivor @SarahFunes @TheLizArmy @BTSMchat T2: “Stable” is usually just the scan. IMO, pts are never stable emotionally & cognitively... there is always something “off.” Sometimes I have to drag it out of ppl at visits 🙂 #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @CBlotner_ @BTSMchat T3 That’s a cool cancer side effect! I drop the cancer card & suggest meeting folks for coffee. I feel ugly? I feel dumb? I feel whatever? But when I meet up with someone, I get over myself for a hot minute & it’s the effing best. Like, why wasn’t I doing this before? #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor @AshleySumrallMD @adamhayden @JeremyPivor @SarahFunes @TheLizArmy @BTSMchat 100% #BTSM |
| Victoria @V_BBurns @BTSMchat T3: my animals were my rock when I was recovering from my craniotomy and experiencing extreme loneliness and isolation (some of it by choice). TV was also probably my main coping mechanism. I needed an escape desperately. It still is. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @CNMnopatchouli @TheLizArmy @BTSMchat Most of the people that I treat who have had brain radiation dip cognitively after about three in the afternoon. We recommend scheduling important things early in the day #btsm |
| #BTSM chat @BTSMchat Thanks for joining us tonight! Tonight’s #BTSM chat topics were co-created by @TheLizArmy and @lisaoleary524, inspired by @AfternoonNapper. TY to @CBlotner_ for co-piloting the chat. The #BTSM organizing team also includes @adamhayden @Sabine_NJ & @JeremyPivor. ♥️ |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @CBlotner_ @JeremyPivor @SarahFunes @TheLizArmy @BTSMchat Ours is embedded in clinic. A lot of people don’t even realize what they can do. #btsm https://t.co/siLapAsmxt |
| Liz Salmi @TheLizArmy @bermudababe76 @DrAMansouri @BTSMchat Maybe we need a #BTSM running group on Apple Watch? |
| Sarah Funes Ozturk @SarahFunes I can see that for sure. |
| 🧠Julia Robertson @Ailuj_Nostrebor @AshleySumrallMD @CNMnopatchouli @TheLizArmy @BTSMchat I'm 8 years post-op and find my 4 - 6pm lectures a nightmare! #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch RT @AshleySumrallMD: @JeremyPivor @SarahFunes @TheLizArmy @BTSMchat T2: @JeremyPivor @SarahFunes @TheLizArmy @BTSMchat T2: “Stable” is usually just the scan. IMO, pts are never stable emotionally & cognitively... there is always something “off.” Sometimes I have to drag it out of ppl at visits 🙂 #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat Meeting up with a human person gets me out of my me-brain lock. Back in the present... #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @SarahFunes And some can’t read or see clearly anymore so the traditional questionnaire just doesn’t work #btsm |
| Charlie Blotner @CBlotner_ RT @BTSMchat: Looking for more support? Tune in to Brain Tumor Support Conversations with @lisaoleary524 & @adamhayden on Sunday, August 18 at 4pPT/7pET. Patients, care partners, any brain tumor type, any stage of treatment can join! Register now at https://t.co/6jD7Tl1XoT. #BTSM https://t.co/nWfjmMRnwy |
| Liz Salmi @TheLizArmy @DrAMansouri @CNMnopatchouli @AkalStation @BTSMchat Ah yes, I wonder if Canadian brain tumor survivors struggle with the same level of medical debt as their U.S. counterparts. CC @clairehsnyman #btsm |
| Sarah Funes Ozturk @SarahFunes @TheLizArmy @bermudababe76 @DrAMansouri @BTSMchat even though I can't run I totally support the idea! #btsm |
| Lisa O'Leary @lisaoleary524 Sorry I missed most of this chat - I just found out I have a partial bowel obstruction 😭 I KNEW there was a demon from the upside down occupying my intestines! See you next month, fam! #BTSM |
| #BTSM chat @BTSMchat We hope tonight helped the brain tumor community form some connections and feel a little less lonely. 🤗 You can find the full transcript of tonight's #BTSM chat on Loneliness here: https://t.co/IvRCCHw2vq |
| 🧠Julia Robertson @Ailuj_Nostrebor @CNMnopatchouli @AshleySumrallMD @TheLizArmy @BTSMchat A little from either I imagine #btsm |
 | Enlightening Results 💡 @GraceCordovano RT @TheLizArmy: @BTSMchat T1: @BTSMchat T1: I remember feeling most lonely around 6 months to 2 years after diagnosis. Why? - Uncontrolled seizures prevented me from driving. I had no independence. - Oral chemo meant treatment was done at home and I had no one to talk to. #btsm |
| Erica Robinson @eleighrobs @BTSMchat You did 😘 #BTSM |
| Sarah Funes Ozturk @SarahFunes @AshleySumrallMD that would be an excellent time to discuss assistivetechnology for those who have problems seeing/reading what 1 of 2 #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat @TheLizArmy @lisaoleary524 @AfternoonNapper @CBlotner_ @adamhayden @Sabine_NJ @JeremyPivor Great job as always, guys. ❤️I think it is so important to keep putting these issues out there #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD RT @BTSMchat: Looking for more support? Tune in to Brain Tumor Support Conversations with @lisaoleary524 & @adamhayden on Sunday, August 18 at 4pPT/7pET. Patients, care partners, any brain tumor type, any stage of treatment can join! Register now at https://t.co/6jD7Tl1XoT. #BTSM https://t.co/nWfjmMRnwy |
| Sarah Funes Ozturk @SarahFunes @AshleySumrallMD is on the screen. The software is freely available through apps or built into many computers or phones! (2 of 2) #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @Lee_Cubis |
| Sarah Funes Ozturk @SarahFunes @AshleySumrallMD ot anyone feel free to message me for more information on #assistivetechnology! #btsm |
| #BTSM chat @BTSMchat We created 400,000+ impressions w/#BTSM tweets tonight. THX for sharing what you know about brain tumors so everyone can learn! Top contributors tonight: @TheLizArmy @AshleySumrallMD @adamhayden @SarahFunes @Lifeiskitsch @CBlotner_ @Ailuj_Nostrebor @bermudababe76 @Sabine_NJ https://t.co/28lPjd5zlP |
| #BTSM chat @BTSMchat Mark your calendars for next #BTSM chat: Sunday, September 1 at 6pm PT/9pm ET. 🗓️ This chat will be led by @Sabine_NJ and @CBlotner_! |
 | Michael Fratkin @MichaelDFratkin I understand |
| Sarah Funes Ozturk @SarahFunes Havve a great night. It's 5:11 Turkish time so hopefully I can finally sleep? 🤞🏼 #btsm |
| Sarah Funes Ozturk @SarahFunes @bermudababe76 @CharityMiles I'll take part in that. Can you tweet me more info please? #btsm |
#BTSM content from Twitter.