#BTSM Transcript

Healthcare social media transcript of the #BTSM hashtag.
().
See #BTSM Influencers/Analytics.

Sign up for FREE Symplur Account and Get
  • Create Transcripts with Custom Dates
  • Get Custom Influencer Lists
  • 3x Hashtag Search Results
Sign Up Now
ProfileTweet
BTSM chat | #btsm @BTSMchat
Hello everyone! Welcome to the monthly Brain Tumor Social Media tweet chat! Remember to use the hashtag #BTSM in order to take part in tonight’s conversation.
SeleneSeltzer @SeleneSeltzer
RT @BTSMchat: Less than 10 minutes! Looking forward to a great chat! #btsm
BTSM chat | #btsm @BTSMchat
Tonight on #BTSM, we’re talking about our minds, body, spirit and soul after a brain tumor diagnosis.
NCI Cancer Stats @NCICancerStats
According to 2009-2015 data, 77% of all brain and other nervous system cancers were diagnosed at the localized stage. Read more here: https://t.co/L2LuXfQkWz #BTSM @BTSMchat https://t.co/41MaMhiv36
fschmnn @fschmnn
@amhoov All I tweet about is cancer, music, and random grievances so I don’t mind. Plus I’ll be in on the #btsm chat too!
BTSM chat | #btsm @BTSMchat
Helping to keep the chat flowing is the one and only @TheLizArmy! The #BTSM organizing team also includes @lisaoleary524 @adamhayden @cblotner_ & @JeremyPivor.
Aaron, still alive (for now) @amhoov
@BTSMchat Self-deprecation is MY jam (apparently). #btsm
BTSM chat | #btsm @BTSMchat
Let’s start our chat with introductions! What is your name? Where are you based? Who are you? Why are you here? Tweet #BTSM if you’re only here to listen. Welcome everyone!
Lizzy Hedgehog @LizzyHedgehog
RT @BTSMchat: Tonight on #BTSM, we’re talking about our minds, body, spirit and soul after a brain tumor diagnosis.
Aaron, still alive (for now) @amhoov
@fschmnn The random grievances are my favorite. Followed closely by the music. #BTSM
BTSM chat | #btsm @BTSMchat
For those new to #BTSM, every 1st Sunday we gather for a live chat at 9pm ET to discuss interesting and timely topics that are meaningful to people facing and caring for those dealing with brain tumors.
BTSM chat | #btsm @BTSMchat
#BTSM (brain tumor social media) is a patient-run, grassroots Twitter community and is not owned by any organization.
Lizzy Hedgehog @LizzyHedgehog
@BTSMchat I am Lizzy. I am based in Houston, Texas. I am a brain tumor survivor since 1993! I wish to spread BT awareness & share my story #BTSM
Liz Salmi | #StayHome @TheLizArmy
@BTSMchat @lisaoleary524 @adamhayden @CBlotner_ @JeremyPivor But you missed the important part... @Sabine_NJ is running @BTSMchat tonight! She's a patient advocate rock star! #btsm https://t.co/CWLcqqM3tF
fschmnn @fschmnn
@BTSMchat I’m Rudy from Knoxville TN with an astrocytoma just trying to make sense of it all almost 2 years into this crazy game. Maybe I can help those helping me back. #btsm
Aaron, still alive (for now) @amhoov
I’m Aaron in Boston. GBM 4 diagnosed in April. Here for camaraderie and to share my story as well. #BTSM
BTSM chat | #btsm @BTSMchat
Our #BTSM chat lasts 1hr. It's designed to connect and educate the brain tumor community, develop our voices, connect patients/loved-ones with healthcare professionals, and spur action.
Liz Salmi | #StayHome @TheLizArmy
@LizzyHedgehog @BTSMchat Welcome Lizzy! It's great to see you back. How's Sonic life? #btsm
staying in to save lives @bermudababe76
@BTSMchat I’m Robyn, former care partner for my mom who died from GBM 17 months ago. I’m here to keep her memory alive by sharing her story & experience with brain cancer. I’m based in the Cayman Islands. #BTSM
Liz Salmi | #StayHome @TheLizArmy
@fschmnn @BTSMchat I didn't realize you were in TN! Where do you go for care? #btsm
Sean Sachdev, MD @SeanSachdevMD
@BTSMchat Hi all #radonc here, hoping to listen in and learn from those who voice their opinions. #btsm
Melissa Blank @MelissaMBlank
I'm Melissa. I live in the South. I have #glioblastoma grade 4. Oh, also, 4 days ago I had my THIRD brain surgery in 8 months. I'm here bc I like talking to people who understand, but also bc some of us have really cool scars!
Lizzy Hedgehog @LizzyHedgehog
@TheLizArmy @BTSMchat Haha good seen the new movie 8 times so far 😅#btsm
Liz Salmi | #StayHome @TheLizArmy
@amhoov Almost at the 12 month mark! Way to go. #btsm
BTSM chat | #btsm @BTSMchat
While intros continue, let’s go over some #BTSM tweetchat guidelines: We assume all tweets during #BTSM express your own personal opinions and not those of an employer or organization (unless specified).
Aaron, still alive (for now) @amhoov
@bermudababe76 @BTSMchat Welcome, Robyn! I’m sorry to hear about your mom. Glad you’re bringing a bit of her to us via the chat. #btsm
BTSM chat | #btsm @BTSMchat
Watch this orange #BTSM avatar for the 4 topics we’ll be discussing. Topics are labeled T1, T2, T3 and T4. Please label your answers with T1, T2, etc to make conversation easier to follow.
Candi Milo @candimilo
RT @LizzyHedgehog: @BTSMchat I am Lizzy. I am based in Houston, Texas. I am a brain tumor survivor since 1993! I wish to spread BT awarenes…
Steve Blank 🌻 @blank_steve
@BTSMchat @MelissaMBlank #btsm
SeleneSeltzer @SeleneSeltzer
@BTSMchat Selene Seltzer. Southern Oregon. Palliative Care Activist/Clinical Healthcare Chaplain (spec in PalCare) Ardent Optimizer: Quality of Life. Hear to listen + learn. #btsm
🧠Julia Robertson @Ailuj_Nostrebor
@BTSMchat Julia, Brisbane, Australia. I'm a patient, advocate, researcher and carer. Brains are my jam :) #BTSM
BTSM chat | #btsm @BTSMchat
Dissenting comments and opposing views are perfectly acceptable. Personal attacks, vulgar language and negative tweets directed at an individual are not tolerated. #BTSM
Sarah @SazrahB
I’m an APN committed to helping my patients live their best lives. Here to listen/learn! #btsm
fschmnn @fschmnn
@TheLizArmy @BTSMchat Initially locally but now happily at Duke. Worth the trip as I’m still alive after having been told I wouldn’t be.... #btsm
Matt Cotcher @MLCotcher
Welcome, everyone! Matt C, here (Georgia, USA) - 2x ependymoma survivor (2007 & 2017). #btsm
KateBats @KattyBatty1
@BTSMchat #BTSM. NJ mom to the 2x surgery Teen. Listening tonight while simultaneously helping said Teen look for an after-school job.
Liz Salmi | #StayHome @TheLizArmy
@BTSMchat Liz here. Sacramento, CA. I am a human being who is curious about all the things. I am here because it really helps me to connect with people who know what it is like to face a brain tumor (because I have one too). #btsm
Steffen L. Nielsen @realBloodyQQ
Steffen, live in Denmark, AA3 and 1 and half year since dx #btsm
Saving Pennies 4 A Cure @SP4acure
#btsm
BTSM chat | #btsm @BTSMchat
We have a lot of remarkable folks with us tonight and lots of ideas will be shared – please try to stay on topic. #BTSM
BTSM chat | #btsm @BTSMchat
RT @LizzyHedgehog: @BTSMchat I am Lizzy. I am based in Houston, Texas. I am a brain tumor survivor since 1993! I wish to spread BT awarenes…
GoodGollyMsMolly @Lifeiskitsch
@BTSMchat Hey! I almost forgot! Molly. Dx October 2016– Anaplastic Astrocytoma. Stable so far since then & all the radiation & Temodar. Am a Chatty McChatterson. #BTSM https://t.co/bz1rhqwmOh
BTSM chat | #btsm @BTSMchat
RT @fschmnn: @BTSMchat I’m Rudy from Knoxville TN with an astrocytoma just trying to make sense of it all almost 2 years into this crazy ga…
BTSM chat | #btsm @BTSMchat
RT @amhoov: I’m Aaron in Boston. GBM 4 diagnosed in April. Here for camaraderie and to share my story as well. #BTSM
BTSM chat | #btsm @BTSMchat
We would like to remind everyone that this is a safe space. If you are a person without spiritual beliefs, we still encourage you to participate in tonight’s chat. #BTSM
BTSM chat | #btsm @BTSMchat
RT @bermudababe76: @BTSMchat I’m Robyn, former care partner for my mom who died from GBM 17 months ago. I’m here to keep her memory alive b…
BTSM chat | #btsm @BTSMchat
RT @SeanSachdevMD: @BTSMchat Hi all #radonc here, hoping to listen in and learn from those who voice their opinions. #btsm
BTSM chat | #btsm @BTSMchat
Let’s get ready for T1 in just 1 minute. #BTSM
BTSM chat | #btsm @BTSMchat
@blank_steve @MelissaMBlank Jump in anytime, Steve! #btsm 👍
Erica Robinson @eleighrobs
@BTSMchat Hi friends! Erica here, from Boston. @NBTStweets @NewEnglandNBTS Advocate. Survivor. Team captain. #BTSM
Steve Blank 🌻 @blank_steve
#btsm
BTSM chat | #btsm @BTSMchat
RT @MLCotcher: Welcome, everyone! Matt C, here (Georgia, USA) - 2x ependymoma survivor (2007 & 2017). #btsm
BTSM chat | #btsm @BTSMchat
RT @SazrahB: I’m an APN committed to helping my patients live their best lives. Here to listen/learn! #btsm
BTSM chat | #btsm @BTSMchat
RT @SeleneSeltzer: @BTSMchat Selene Seltzer. Southern Oregon. Palliative Care Activist/Clinical Healthcare Chaplain (spec in PalCare) Arden…
Dr. Sabine Schwab @Sabine_NJ
@BTSMchat I’m Sabine. Busy tweeting from @BTSMchat chat tonight. Lol #btsm
BTSM chat | #btsm @BTSMchat
RT @KattyBatty1: @BTSMchat #BTSM. NJ mom to the 2x surgery Teen. Listening tonight while simultaneously helping said Teen look for an after…
BTSM chat | #btsm @BTSMchat
T1: Does religion or spirituality play a role in your life? Has this changed since diagnosis? Clinicians: Do you talk with patients about their religious/spiritual beliefs? #BTSM
BTSM chat | #btsm @BTSMchat
RT @TheLizArmy: @BTSMchat Liz here. Sacramento, CA. I am a human being who is curious about all the things. I am here because it really he…
BTSM chat | #btsm @BTSMchat
RT @realBloodyQQ: Steffen, live in Denmark, AA3 and 1 and half year since dx #btsm
BTSM chat | #btsm @BTSMchat
RT @Lifeiskitsch: @BTSMchat Hey! I almost forgot! Molly. Dx October 2016– Anaplastic Astrocytoma. Stable so far since then & all the radiat…
BTSM chat | #btsm @BTSMchat
RT @Sabine_NJ: @BTSMchat I’m Sabine. Busy tweeting from @BTSMchat chat tonight. Lol #btsm
BTSM chat | #btsm @BTSMchat
RT @eleighrobs: @BTSMchat Hi friends! Erica here, from Boston. @NBTStweets @NewEnglandNBTS Advocate. Survivor. Team captain. #BTSM
GoodGollyMsMolly @Lifeiskitsch
Hey, Tweeter folks! My feed about to go crazy with brain chatter from 9-10pm EST tonight! #BTSM
Corrie Painter, PhD @corrie_painter
Hi #btsm, I’m from Massachusetts, surviving a different cancer, angiosarcoma. Im also a scientist working across many cancers including brain cancer. I’m here to listen and learn.
I Live Now Rachel 💎 @KickBrainTumors
Hello, Rachel here listening in. Being a brain tumor survivor. The subject Mind, Body, & Soul , is an excellent topic. The BRAIN is one of the most important organs. All of the 3 are all connected for Healthy minds. Healthy LIVING. Life🧠 #BTSM Faith. @HYHUTriangle
Liz Salmi | #StayHome @TheLizArmy
@bermudababe76 @BTSMchat We love care partners! I am sorry to hear about your mother. I appreciate you joining us to keep her memory alive, and sharing your experiences so we can learn from the two of you. #btsm
Aaron, still alive (for now) @amhoov
T1: I waffle between atheism and agnosticism. (Can’t even make up my mind about making up my mind!). To extent that it’s spiritual, I’ve been trying to meditate daily. #btsm
Liz Salmi | #StayHome @TheLizArmy
@fschmnn @BTSMchat Wow, that must be quite a trip from TN? #btsm
Dr. Sabine Schwab @Sabine_NJ
@BTSMchat T1: Yes! It’s a big part in my day-to-day. Being diagnosed deepened my faith even more. #btsm
Steffen L. Nielsen @realBloodyQQ
T1 - no #btsm
Liz Salmi | #StayHome @TheLizArmy
@KattyBatty1 @BTSMchat Mom of the year! #btsm
Melissa Blank @MelissaMBlank
T1: While religion has not had a deep effect on my diagnosis and the way I cope, I have found myself drawn to some forms of Eastern philosophies as making more sense to me. I won't claim to be #buddhist, I will say that Buddhism makes more sense to me than most philosophies #btsm
🧠Julia Robertson @Ailuj_Nostrebor
@BTSMchat T1 It has changed since diagnosis and more so since surgery. I used to be quite involved but now... not at all #BTSM
fschmnn @fschmnn
@realBloodyQQ It must be late there! Fun Fact: I lived in Copenhagen for a year when I was 2/3 years old. I actually learned Danish along with English as my first language though I don’t remember any. Was mostly potty trained there too. I remember that. #btsm
BTSM chat | #btsm @BTSMchat
@MelissaMBlank Hi Melissa! Glad you are joining us. Remember to add the hashtag so everyone can find your tweets. #BTSM
BTSM chat | #btsm @BTSMchat
RT @MelissaMBlank: I'm Melissa. I live in the South. I have #glioblastoma grade 4. Oh, also, 4 days ago I had my THIRD brain surgery in 8 m…
Melissa Blank @MelissaMBlank
@amhoov Finding a meditation practice has helped me immensely. #btsm
BTSM chat | #btsm @BTSMchat
RT @corrie_painter: Hi #btsm, I’m from Massachusetts, surviving a different cancer, angiosarcoma. Im also a scientist working across many…
BTSM chat | #btsm @BTSMchat
RT @KickBrainTumors: Hello, Rachel here listening in. Being a brain tumor survivor. The subject Mind, Body, & Soul , is an excellent topic.…
Mariah Jae @MariahJaeee
@BTSMchat T1: I’m an atheist, but sometimes I consider the afterlife in traditionally religious terms when I consider life, especially if I leave this life early that I might see my loved ones again but ultimately I don’t live spiritually #BTSM
fschmnn @fschmnn
@TheLizArmy @BTSMchat 6 hour drive every two months. Fortunately they partner with a local onc who oversees my infusions and any urgent stuff. #btsm
Melissa Blank @MelissaMBlank
SAME #btsm
BTSM chat | #btsm @BTSMchat
Repeating T1 for your convenience: Does religion or spirituality play a role in your life? Has this changed since diagnosis? Why/Why not? Clinicians: Do you talk with patients about their religious/spiritual beliefs? #BTSM
Aaron, still alive (for now) @amhoov
T1: Hard for me to imagine (believe in) a benevolent god/entity who would inflict this disease on anyone. #BTSM
Matt Cotcher @MLCotcher
A1: both religion & spirituality are important to me and always have been. But both things have played an increased role since my 1st surgery in ‘07. #btsm
Lizzy Hedgehog @LizzyHedgehog
@BTSMchat T1: I feel God used my brain tumor as a way to get my parents & I to him and get saved. It was awesome to share our testimonies, including mine to others #btsm
SeleneSeltzer @SeleneSeltzer
T1: I take "whole-person" approach to caring for your mind, body + spirit when facing any #seriousillness, focus on connecting + cultivating your desires/personal strengths in service to your #QoL. And yes, religious + spiritual beliefs is part of the convo. #btsm #humansofpc
staying in to save lives @bermudababe76
@BTSMchat T1 This is tough. I have really struggled since my mom’s death with the idea that God/a higher being is out there. I’m angry. And sad. A lot. But I do feel a connection in a spiritual way to nature - I’ve always been that way. Now the ocean has been my safe Harbour. #BTSM
Liz Salmi | #StayHome @TheLizArmy
@BTSMchat T1. I was always agnostic leading up to diagnosis. After diagnosis & meeting other brain tumor patients, I noticed some were MORE drawn to religion after diagnosis. I did not feel that way & wondered if something was wrong with me. I didn't feel the pull to want to pray. #btsm
GoodGollyMsMolly @Lifeiskitsch
@BTSMchat T1: yes. I was raised very Roman Catholic but faded over time. Dx changed me a lot, had very... spiritual-y changes (started w/my first MRI & was epic life changing experience), but definitely grew when my mom died of pancreatic cancer two years ago. I... feel things. #BTSM
fschmnn @fschmnn
@realBloodyQQ I usually only get anxious at that hour. I’m in awe. #btsm
Liz Salmi | #StayHome @TheLizArmy
@amhoov I think I am a devout agnostic. 😂 #btsm
BTSM chat | #btsm @BTSMchat
RT @MelissaMBlank: T1: While religion has not had a deep effect on my diagnosis and the way I cope, I have found myself drawn to some forms…
BTSM chat | #btsm @BTSMchat
RT @realBloodyQQ: T1 - no #btsm
Melissa Blank @MelissaMBlank
I've been working on The Tibetan Book of Living and Dying for a while now. That is after I finished (and blogged about) When Things Fall Apart by Pema Chodron #btsm
Erica Robinson @eleighrobs
@BTSMchat T1. I put holy water on my right temporal lobe when I walk into a church. I don't know if this helps, but I feel like it does. #BTSM
Aaron, still alive (for now) @amhoov
@eleighrobs @BTSMchat I love this image! #BTSM
Melissa Blank @MelissaMBlank
We all cope in our own ways. Nothing wrong with that. #btsm
🧠Julia Robertson @Ailuj_Nostrebor
@MelissaMBlank I've been working my way through that one too #btsm
Liz Salmi | #StayHome @TheLizArmy
@BTSMchat T1 part 2: While not "religious" I DO think I have found way to incorporate ritual into my life as a way to find balance. My rituals = exercise, running, Sunday breakfast with the partner. #btsm
fschmnn @fschmnn
@amhoov I’m pretty much the same. #btsm
BTSM chat | #btsm @BTSMchat
RT @MLCotcher: A1: both religion & spirituality are important to me and always have been. But both things have played an increased role sin…
Sarah @SazrahB
T1: I don’t bring it up but if my patient does, I’m supportive. Important for me to not seem at all like I’m pushing my own agenda (or the agenda of my employer) #btsm
Melissa Blank @MelissaMBlank
@Ailuj_Nostrebor I've quite enjoyed it, but it is taking me a looooong time to get through it. #btsm
Erica Robinson @eleighrobs
@amhoov @BTSMchat It can't hurt, right? #BTSM
Dr. Sabine Schwab @Sabine_NJ
@Lifeiskitsch @BTSMchat I had the same experience when my mom died! Interesting how it can be so different, my mom’s death pushed my sister out completely from anything church-related... #btsm
Sammy (Brain Tumour Warrior) @Sammy75J
@BTSMchat I've certainly thought more about God & my relationship with him since my diagnosis but I haven't been able to bring myself to go back to church. I think despite 4 years I'm still in my angry stage of grieving & at this point, I'm not sure if I'll ever really get out of it #btsm
Aaron, still alive (for now) @amhoov
@TheLizArmy @BTSMchat I used to joke that Crossfit was my church. Then, they offered me a free lifetime membership when I got my dx. Now it really is! #btsm
GoodGollyMsMolly @Lifeiskitsch
@BTSMchat T1, Part Deux. Like, I’m not “religious.” I’m something-y. I just feel... differently about death, dying & all-a that stuff. I don’t now what I believe, but I know it’s good & it started w/ that MRI experience... (a talk w/something, & I got to choose my path forward). 🤷‍♀️ #BTSM
BTSM chat | #btsm @BTSMchat
@MelissaMBlank Share a link to that blog post! #btsm
BTSM chat | #btsm @BTSMchat
RT @eleighrobs: @BTSMchat T1. I put holy water on my right temporal lobe when I walk into a church. I don't know if this helps, but I feel…
Dr. Sabine Schwab @Sabine_NJ
@TheLizArmy @BTSMchat I like that you bring up exercise! Nourishing my Mind spirit and body to me is not just prayer. It’s yoga and meditation and healthy nutrition too #btsm
Sean Sachdev, MD @SeanSachdevMD
@amhoov @TheLizArmy @BTSMchat way to go @CrossFit #btsm
𝘾𝙝𝙧𝙞𝙨𝙩𝙞𝙣𝙚 𝙍𝙤𝙜𝙚𝙧𝙨, 𝙋𝙝𝘿 🌸🌱 🧬🧠 @preopticarea
@BTSMchat T1... an emphatic yes! I really had a moment of clarity upon getting diagnosed! My spirituality did increase! I realized that there was a very definite chance I would die and so I decided to make my life more useful for everyone else! Meditation helped! I changed a lot #btsm
fschmnn @fschmnn
@amhoov T1: this disease is a special torture. #btsm
BTSM chat | #btsm @BTSMchat
Great discussion so far! Let’s get ready for T2 in just 1 minute. #BTSM
Melissa Blank @MelissaMBlank
Ok! https://t.co/tMVooFtqeL #btsm
SeleneSeltzer @SeleneSeltzer
@BTSMchat T1 cont: #Spirituality is an expression of care + compassion to the human spirit seeking connection, meaning + purpose – to the moment, to self, to others, to nature + to the Sacred – however it manifests for you. #btsm
🧠Julia Robertson @Ailuj_Nostrebor
@MelissaMBlank Me too. It was sent to me by another brain tumour patient not long after I had surgery. I read it in bits, mull over it and go back to read more. #BTSM
Aaron, still alive (for now) @amhoov
@fschmnn It really gets into all the cracks, doesn’t it? #BTSM
Liz Salmi | #StayHome @TheLizArmy
@eleighrobs @BTSMchat Wow! You just reminded me, my husband always kisses my scar area before I go in for an MRI. Holy water. Kisses. They are all rituals which give us peace of mind. #BTSM https://t.co/RCC6NU1lqB
SeleneSeltzer @SeleneSeltzer
@BTSMchat #btsm
Dr. Sabine Schwab @Sabine_NJ
@SeleneSeltzer @BTSMchat This! #btsm
BTSM chat | #btsm @BTSMchat
T2: In what way does religion and/or spirituality help you cope with your diagnosis? If you are not a spiritual person, what other coping strategies to you use? Clinicians: What are coping strategies that you recommend? #BTSM
Jeremy Pivor @JeremyPivor
@BTSMchat T1: I’ve always been agnostic, and I think since I was diagnosed at 12y/o my spiritual identity was shaped by the idea of not wanting to discount anything given the uncertainty I faced in life. I found my rabbi and Jewish community as essential guides beyond religion. #btsm
Steve Blank 🌻 @blank_steve
@SeleneSeltzer @BTSMchat That's a great way of explaining it. #btsm
Melissa Blank @MelissaMBlank
@Ailuj_Nostrebor Same! I think I'm only halfway through, but it has been a profound education to slowly read through this wisdom #btsm
Guy Lipof - גיא @Project2Program
@BTSMchat Sorry all, but I can’t join tonight. I’ll look at the topics and responses later. Love from Susie and myself! #BTSM
BTSM chat | #btsm @BTSMchat
Thank you all for sharing your deeply personal experiences. We're learning a lot tonight... #btsm 🙏❤️🙏
Dr. Sabine Schwab @Sabine_NJ
@BTSMchat T2: I’m a big control freak, and my religious beliefs help me to accept that I am not in control. #btsm
fschmnn @fschmnn
@bermudababe76 @BTSMchat T1: watching my dad die (not from cancer) changed my attitude on faith dramatically. Made me a very dirt and earth type guy though I swear I feel my father’s spirit all the time now. #btsm
🧠Julia Robertson @Ailuj_Nostrebor
T2 Other coping strategies for me have been, Studying, meditation, exercise, talking to others in the same situation, knitting and crochet... #BTSM
Ashley Love Sumrall, MD, FACP @AshleySumrallMD
@BTSMchat Q1. Yes, I discuss faith. One of my favorite parts of treating pts w brain tumors is how illness intersects w faith. I’m Christian, but I think all faiths offer comfort & (maybe) improved survival #btsm
Aaron, still alive (for now) @amhoov
T2: Daily sitting meditation has been huge. Being aware of my breath and developing an ability to quiet my runaway mind has been extraordinarily helpful. #btsm
Mariah Jae @MariahJaeee
@BTSMchat T2: I sometimes think lack of spirituality makes the diagnosis easier to process. There’s no greater purpose or plan to me or my struggles it’s all just part of the great chaos and randomness of life. I’m mad enough at myself I can’t imagine being mad at a god #BTSM
Erica Robinson @eleighrobs
@TheLizArmy @BTSMchat Awwww!❤️Exactly. Peace of mind. Literally! #BTSM
h e a t h e r z e e 🇺🇸 @ZHeatherChamp
@BTSMchat A1: During my recovery I wasn’t ever mad at God, I just didn’t care about anything. Nothing. Nada. #btsm
Lizzy Hedgehog @LizzyHedgehog
@BTSMchat For me I spend time talking to my lord, crying, confessing feelings, praying over my problems. I feel that helps me a lot. It’s hard to be a survivor sometimes in a cruel world. #btsm
Liz Salmi | #StayHome @TheLizArmy
@SeanSachdevMD @amhoov @BTSMchat @CrossFit I have definitely found meaning through movement. Having had to relearn how to walk and balance has made movement something I do not take for granted. #btsm
SeleneSeltzer @SeleneSeltzer
RT @TheLizArmy: @eleighrobs @BTSMchat Wow! You just reminded me, my husband always kisses my scar area before I go in for an MRI. Holy wat…
Jeremy Pivor @JeremyPivor
@BTSMchat T2: My spirituality is linked to nature and the idea that essentially everything is connected. When I get overwhelmed with my diagnosis or anything in life, I try to reconnect with nature to whatever extent I can. #btsm
BTSM chat | #btsm @BTSMchat
Mic drop. #btsm 👇👇👇
Saving Pennies 4 A Cure @SP4acure
@MelissaMBlank @BTSMchat Hi 👋 My name is Sharon, I am in Richmond VA. I had a different type of cancer. I am here to listen and offer support. We are in this fight together regardless of what stage, age, and what type of cancer #btsm
GoodGollyMsMolly @Lifeiskitsch
@eleighrobs @BTSMchat I hadn’t been to church in years but we went to St. Bonaventure in Detroit for the Blessing of the Sick & see if maybe Solanus Casey (he’s one step away from catholic sainthood!) could give us a quick fix. @FrSolanusCasey #BTSM
staying in to save lives @bermudababe76
@BTSMchat T2 #BTSM I run marathons to help me keep moving forward. It was something I did before my mom’s diagnosis; in all honesty I’ve struggled in running consistently since her death. I’ve lost a lot of motivation in life in general. But having a race helps gives me a future goal.
SeleneSeltzer @SeleneSeltzer
RT @BTSMchat: Repeating T1 for your convenience: Does religion or spirituality play a role in your life? Has this changed since diagnosis?…
Melissa Blank @MelissaMBlank
T2: I've been quite open about needing help with mental health, both through chemical help (happy pills) and therapy. I am an English and composition instructor by trade. My best way to cope is to WRITE. I journal. I blog. I write articles. I've dabbled in poetry #btsm
Aaron, still alive (for now) @amhoov
T2: I think dx helps people find/make more meaning in their lives. Sometimes that’s through religion, sometimes not. As a professor, it’s helped me have more empathy for my students. Sometimes feels like a revelation. #btsm
BTSM chat | #btsm @BTSMchat
T2 (repeated): In what way does your religion and/or spirituality help you cope with your diagnosis? If you are not a spiritual person, what other coping strategies to you use? Clinicians: What are coping strategies that you recommend? #BTSM
Ashley Love Sumrall, MD, FACP @AshleySumrallMD
@BTSMchat T2 #btsm @BTSMchat I like to recommend keeping a journal if pts can still see, read/ write. An alternative is to have a caregiver or friend to help. I like these “legacy journals” such as: Story of My Life: A Workbook for Preserving Your Legacy https://t.co/2Gkm0lzm3d
Liz Salmi | #StayHome @TheLizArmy
@Sabine_NJ @BTSMchat 🙋‍♀️Also a control freak! The hardest part of all this was to surrender myself to the RANDOMNESS of it all. #btsm
Melissa Blank @MelissaMBlank
RT @amhoov: T2: I think dx helps people find/make more meaning in their lives. Sometimes that’s through religion, sometimes not. As a profe…
Ashley Love Sumrall, MD, FACP @AshleySumrallMD
@BTSMchat T2: @StoryCorps is another great way to preserve/ share memories #btsm
Aaron, still alive (for now) @amhoov
@TheLizArmy @Sabine_NJ @BTSMchat OMG - so true! But, we only had the *illusion* of control before… #btsm
GoodGollyMsMolly @Lifeiskitsch
@eleighrobs @BTSMchat @FrSolanusCasey #btsm https://t.co/ExMe5D1V5N
Sammy (Brain Tumour Warrior) @Sammy75J
@BTSMchat I still pray/talk to God, my coping methods tend to rely on a charity @brainstrust who support me & of course my friends but mostly I cope by writing things down in the hope I'll start my youtube channel back up. Giving back is the only thing that makes me feel human atm #BTSM
Erica Robinson @eleighrobs
@TheLizArmy @Sabine_NJ @BTSMchat 🙋‍♀️#BTSM
Dr. Sabine Schwab @Sabine_NJ
@BTSMchat T2: I was introduced to @MOPS_Int shortly after being diagnosed. This is where I found my village. These ladies pray for me, deliver meals, help with childcare, you name it. #btsm
Jeremy Pivor @JeremyPivor
@AshleySumrallMD @BTSMchat I have a friend from when I was in Med school who did a challenge program during the summer. There are a good number of chaplains who are not “religious,” but can connect on the level of spirituality to go into deeper reflection. It’ll make her a great doctor. #btsm
Matt Cotcher @MLCotcher
A2: I don’t think of it as “coping” per se - I am surrendered to the fact that my condition, my illness, and how people respond to it are all beyond my control. #btsm
fschmnn @fschmnn
T2 I feel a greater sense of spiritual bond with other strugglers. Finding ways to spread kindness increasingly brings me more joy so I can tolerate my own woes better. #btsm
Liz Salmi | #StayHome @TheLizArmy
@BTSMchat T2: As a not religious person, and not a "woo woo" person, I think my coping strategies have been storytelling (sharing my experience) and connecting with others with similar lived experiences (i.e. doing what we are doing right now!). #btsm
Matthew Katz, MD @subatomicdoc
RT @BTSMchat: T2: In what way does religion and/or spirituality help you cope with your diagnosis? If you are not a spiritual person, what…
KateBats @KattyBatty1
@BTSMchat T1. This topic reminded me —both times in recovery this was the view from the Teen’s hospital window. Found it comforting to just look out and think Someone was looking out for him. #BTSM. https://t.co/tUKaFUOhkM
John @hav77
@BTSMchat T2: Since I don't turn to religion or spirituality, when initially DXed, I turned to my doctors and people who been through it and trusted the medical process #btsm
Dave deBronkart @ePatientDave
@TheLizArmy @BTSMchat T2: is a non-bt (but near-death cancer) voice welcome? I can imagine that for #btsm you might want to keep it "in the circle"
h e a t h e r z e e 🇺🇸 @ZHeatherChamp
@MelissaMBlank Yes! I second this! Started my blog the day after dx. So grateful I have it to look back on. #btsm
Liz Salmi | #StayHome @TheLizArmy
@BTSMchat T2 part 2: Another coping strategy for me: DOING SOMETHING. I find serving on the board of directors for @NBTStweets a very rewarding and meaningful way of giving back to this community. Science + research + advocacy = moving the ball forward on finding treatments. #btsm
𝘾𝙝𝙧𝙞𝙨𝙩𝙞𝙣𝙚 𝙍𝙤𝙜𝙚𝙧𝙨, 𝙋𝙝𝘿 🌸🌱 🧬🧠 @preopticarea
@BTSMchat T2! It brought important things into focus! Also I read a lot of texts about end of life care and Buddhism. Notably @jhalifax, whose work really helped me deal with the idea of death. I worked on myself to avoid fear also, through various meditations. I really helped me #btsm
Liz Salmi | #StayHome @TheLizArmy
RT @fschmnn: @amhoov T1: this disease is a special torture. #btsm
Corrie Painter, PhD @corrie_painter
RT @TheLizArmy: @BTSMchat T2 part 2: Another coping strategy for me: DOING SOMETHING. I find serving on the board of directors for @NBTStw
BTSM chat | #btsm @BTSMchat
If you are here tonight to just listen, please tweet “#BTSM” so we know you’re in the audience.
Aaron, still alive (for now) @amhoov
@ZHeatherChamp @MelissaMBlank Yep. Blog for me has been incredibly helpful. Writing is feeling/thinking. #btsm
Corrie Painter, PhD @corrie_painter
#btsm
BTSM chat | #btsm @BTSMchat
@SP4acure @MelissaMBlank Thank you for joining us, Sharon! Everyone is welcome. #btsm
SeleneSeltzer @SeleneSeltzer
3 of my favs by Pema Chodron: When Things Fall Apart: Heart Advice for Difficult Times https://t.co/b02aMvFbNS The Places That Scare You: A Guide to Fearlessness in Difficult Times https://t.co/id8BpEZ2NG Comfortable with Uncertainty https://t.co/P2QOprWe46 #btsm
Melissa Blank @MelissaMBlank
@Ailuj_Nostrebor T2: Another coping strategy is using my darkest and most inappropriate humor to mock that which is trying to kill me. I had a post-op infection surgical washout. How many people have been LITERALLY brainwashed?? #btsm 🤣
BTSM chat | #btsm @BTSMchat
Really interesting tweets on #BTSM right now. Let’s get ready for T3 in just 1 minute!
Liz Salmi | #StayHome @TheLizArmy
@AshleySumrallMD @BTSMchat @StoryCorps Recording a @StoryCorps for my friend David in his final days with glioblastoma was probably the best thing I have ever been part of in my entire life. #btsm https://t.co/GKQKxmQkvO
GoodGollyMsMolly @Lifeiskitsch
T2: I cope by talking about death & dying a lot. I’m fascinated by it. I figure if I can get on good terms with it, then I won’t be as dismayed or scared of it. I also focus on love. I think that helps me deal bigger with life & living & onward-lay. #btsm
fschmnn @fschmnn
@ZHeatherChamp @MelissaMBlank My YouTube vlog is the same. I’ve come so far in so little time. #btsm
Liz Salmi | #StayHome @TheLizArmy
@fschmnn Co sign! #btsm
BTSM chat | #btsm @BTSMchat
T3: Do you think spirituality affects Quality of Life? #BTSM
kathy kastner @KathyKastner
Lurking, learning. bro died in Nov, within 3 months of Glio dx, mother decades ago astrocytoma. #btsm
Dr. Sabine Schwab @Sabine_NJ
RT @BTSMchat: T3: Do you think spirituality affects Quality of Life? #BTSM
Erica Robinson @eleighrobs
@TheLizArmy @AshleySumrallMD @BTSMchat @StoryCorps LOVE everyone in that photo, and miss him. #BTSM
Liz Salmi | #StayHome @TheLizArmy
@hav77 @BTSMchat 👋👋👋 Hello, my friend! Great to "see" you tonight. #btsm
BTSM chat | #btsm @BTSMchat
@ePatientDave @TheLizArmy Please join us! All voices are welcome here. We all learn from each other. #btsm
SeleneSeltzer @SeleneSeltzer
@SazrahB T1: And if you can refer to a/the #PalliativeCare team, there is often a #healthcarechaplain as part of the team that can help with #existential concerns, or even if consulting in the hospital or onc center. #btsm
𝘾𝙝𝙧𝙞𝙨𝙩𝙞𝙣𝙚 𝙍𝙤𝙜𝙚𝙧𝙨, 𝙋𝙝𝘿 🌸🌱 🧬🧠 @preopticarea
@BTSMchat T3 personally it did for me! But I think it really matters what kind of person you are! Those are very personal ideas and I do not think my particular experience can apply to anyone else. Each person will have their own way to deal with this disease! #btsm
Dr. Sabine Schwab @Sabine_NJ
@BTSMchat T3: For me, personally, it does. I’m more stressed and have more symptoms, if I do not pray or meditate or do yoga regularly. It’s more a matter of taking time for myself and force my body to quiet down. #btsm
Jeremy Pivor @JeremyPivor
@ePatientDave @TheLizArmy @BTSMchat The more voices the better. Every person’s medical situation is different even for those with similar brain tumors, but I believe we all share some similar emotional experiences that we can connect on. #btsm
Melissa Blank @MelissaMBlank
T3: I think it CAN, but I don't think it always does. For some people, spirituality makes a HUGE difference. For others (like me) spirituality is too complex to tie it in like that #btsm
kathy kastner @KathyKastner
T3 I am an athiest, yet consider myself very spiritual :-) #btsm
Liz Salmi | #StayHome @TheLizArmy
@ZHeatherChamp @MelissaMBlank Same here! Blogging was very helpful for me for YEARS after diagnosis. These days (11+ years later) I don't know if I have anything new to day. 😕 #btsm
BTSM chat | #btsm @BTSMchat
RT @Lifeiskitsch: T2: I cope by talking about death & dying a lot. I’m fascinated by it. I figure if I can get on good terms with it, then…
Laura Thiel @LauraMThiel
@BTSMchat Hi all Laura here, mostly joining in to listen and gain support. After 7 long hard years my dad is at the end of his journey with #BTSM
Erica Robinson @eleighrobs
@TheLizArmy @BTSMchat 👀 @pattigauvin #BTSM
GoodGollyMsMolly @Lifeiskitsch
Onwardly is what I meant to type. Autocorrect trying to correct my creative typing with real words. I meant Onward-ly not Onward-lay! #btsm
SeleneSeltzer @SeleneSeltzer
@Ailuj_Nostrebor @MelissaMBlank Yes it (Tibetan Book of Living + Dying)is a great one for small bites at a time! #btsm
Mariah Jae @MariahJaeee
@BTSMchat T3: as a non spiritual person the idea of believing in an after life where you would be 100% healthy again might make the hard days easier to a swallow but I feel like thinking this is all I have might push me to get the most of days here (but also makes the bad days worse) #BTSM
fschmnn @fschmnn
@BTSMchat T3: yes in the sense that the more I think of others, the better I feel. Or at least living a worthwhile life. Not religious per se but I think about it often. #btsm
Lizzy Hedgehog @LizzyHedgehog
@preopticarea @BTSMchat T3: I believe yes. Why go day by day with all that stress on your shoulders? I know it’s not easy to tell God what’s bugging you & leave it in his hands. But there is a sense of joy knowing there is someone to turn to and just talk about what’s bugging you. #btsm
Garth Nicholas @Garth_Nicholas1
@BTSMchat #BTSM
BTSM chat | #btsm @BTSMchat
@KathyKastner Thank you for joining us, Kathy! Your experience as a care partner is valuable. Please join in any time. #btsm
Melissa Blank @MelissaMBlank
@TheLizArmy @ZHeatherChamp For me, blogging was better than therapy. It forced me (and still forces me) to be vulnerable in uncomfortable ways. But for so many people, mental health has a stigma, and we only talk about cancer in quiet whispers. I don't whisper. #btsm
SeleneSeltzer @SeleneSeltzer
RT @BTSMchat: T2: In what way does religion and/or spirituality help you cope with your diagnosis? If you are not a spiritual person, what…
I Live Now Rachel 💎 @KickBrainTumors
Absolutely! Without my strong faith in God I would not have made it through many difficult times in life. T3: Quality of life is so much more beautiful. #BTSM
Steve Blank 🌻 @blank_steve
RT @MelissaMBlank: @TheLizArmy @ZHeatherChamp For me, blogging was better than therapy. It forced me (and still forces me) to be vulnerable…
John @hav77
@TheLizArmy @BTSMchat Hello! Glad to be here and share in everyone's thoughts about their own path since DX. It's been awhile...#btsm
Ashley Love Sumrall, MD, FACP @AshleySumrallMD
@BTSMchat T3: for me- yes. Without my faith I probably would not have made it even one year as a neuro-oncologist. It is so hard to continuously lose people you care about. #btsm I’m renewed through faith, prayer. I find that many of my patients rely on faith as well
BTSM chat | #btsm @BTSMchat
Repeat of question T3: Do you think spirituality affects Quality of Life? #BTSM
BTSM chat | #btsm @BTSMchat
During an otherwise deep (and possibly serious) tweet chat, @MelissaMBlank wins with this tweet... #btsm
CNO2020 @CNO2020_Ottawa
@BTSMchat #BTSM
Steve Blank 🌻 @blank_steve
You go honey!
fschmnn @fschmnn
@MariahJaeee @BTSMchat T3 I’ve never thought of the being “normal” again component but I’m not religious at all and more focused on still improving myself NOW. #btsm
Matt Cotcher @MLCotcher
A3: I am at peace and that is because of my spirituality. I can’t imagine facing things without spirituality but recognize that many folks do. I wouldn’t give up my spirituality but am happy to see so many finding their way by other means. #btsm
I Live Now Rachel 💎 @KickBrainTumors
T2: All of my surgeries and hope connected with my faith in believing, that no matter what, I would be okay. #BTSM
Aaron, still alive (for now) @amhoov
T3: Honestly, I still struggle to understand just what QoL really means. My dx alone has given me a much more powerful ability to appreciate every moment. Is that an improvement to QoL? Maybe, I guess. #BTSM
𝘾𝙝𝙧𝙞𝙨𝙩𝙞𝙣𝙚 𝙍𝙤𝙜𝙚𝙧𝙨, 𝙋𝙝𝘿 🌸🌱 🧬🧠 @preopticarea
RT @BTSMchat: During an otherwise deep (and possibly serious) tweet chat, @MelissaMBlank wins with this tweet... #btsm
Erica Robinson @eleighrobs
@MelissaMBlank @BTSMchat Killing it with the GIF just days out of surgery! #BTSM Wishing you a peaceful recovery!
Liz Salmi | #StayHome @TheLizArmy
@BTSMchat T3. As long as we are allowing people to define "spirituality" on their own terms (which may or may not be related to a formal religion) then yes, it does impact quality of life. Existential distress is a hard space to be in. #btsm
GoodGollyMsMolly @Lifeiskitsch
@BTSMchat T3/ Maybe? Maybe not. Maybe? I don’t know if “spirituality” affects QOL so much as accepting death as part of life. There is a comfort in the feeling that life— our individual, piddly little lives— might have a purpose beyond our present knowing. I think that comforts. #BTSM
Liz Salmi | #StayHome @TheLizArmy
@LauraMThiel @BTSMchat Laura -- I am sorry to hear your family is going through this. Has your dad yet completed his life, or in the final stages? #btsm
Melissa Blank @MelissaMBlank
@eleighrobs @BTSMchat Turns out, the third brain surgery isn't quite so bad. And they were generous with the drugs. It's much easier to recover when you have the frequent flier miles and good drugs. #btsm
BTSM chat | #btsm @BTSMchat
Almost time for our final question. Let’s get ready for T4 in just 1 minute! #BTSM
John @hav77
@BTSMchat T2/T3: One thing that was told to me that I've held onto regarding my worries was this: "It's okay to invite it over for tea, but don't let it stay for dinner..." #btsm
BTSM chat | #btsm @BTSMchat
@Garth_Nicholas1 Thanks for joining us, Garth. Jump in at any time. #btsm
BTSM chat | #btsm @BTSMchat
RT @hav77: @TheLizArmy @BTSMchat Hello! Glad to be here and share in everyone's thoughts about their own path since DX. It's been awhile...…
BTSM chat | #btsm @BTSMchat
RT @AshleySumrallMD: @BTSMchat T3: for me- yes. Without my faith I probably would not have made it even one year as a neuro-oncologist. It…
BTSM chat | #btsm @BTSMchat
@CNO2020_Ottawa Glad you could join us! #btsm
Ashley Love Sumrall, MD, FACP @AshleySumrallMD
@BTSMchat T3: Understanding your own spirituality can help w qol. Ex: if you believe in heaven, learning more can be helpful if you or LO have a terminal illness. When my dad was dying of cancer, I devoured Heaven by @randyalcorn. It gave me such peace and I recommend it now #btsm
I Live Now Rachel 💎 @KickBrainTumors
T1: I am thankful you are still here. No words for the pain you endure on a daily basis. #GBM is the worst brain cancer. #btsm I pray you are around for a long time to come my friend.
Erica Robinson @eleighrobs
@MelissaMBlank @BTSMchat Glad to hear it! #BTSM
SeleneSeltzer @SeleneSeltzer
RT @TheLizArmy: @AshleySumrallMD @BTSMchat @StoryCorps Recording a @StoryCorps for my friend David in his final days with glioblastoma was…
BTSM chat | #btsm @BTSMchat
Q4: What is the number one thing you pray/wish for? #BTSM
Dr. Sabine Schwab @Sabine_NJ
RT @BTSMchat: Q4: What is the number one thing you pray/wish for? #BTSM
GoodGollyMsMolly @Lifeiskitsch
@eleighrobs @BTSMchat @FrSolanusCasey (Tbh, I don’t pray to be cured myself. I think it’s a part of my job here, it gives me purpose. That’s something. And people think that’s weird & that’s fine. At the very least, it gives me some peace with the things I can’t control by giving me a job doing things I can. #btsm)
🧠Julia Robertson @Ailuj_Nostrebor
@BTSMchat T3 I think hope affects the quality of life and many people find that hope in spirituality #BTSM
BTSM chat | #btsm @BTSMchat
"What does quality of life even mean, really?" asked everyone with a brain tumor ever. #btsm
Aaron, still alive (for now) @amhoov
T4: Obvs answer would be a cure. For me, it’s that the crazy changes I’ve made to my life and the experimental, repurposed drug cocktail I take are actually doing something. In short, agency! #btsm
Melissa Blank @MelissaMBlank
@Sammy75J @Ailuj_Nostrebor Hey, dark humor doesn't work for everyone, but I am REALLY into cancer-mockery! #btsm
John @hav77
@TheLizArmy @BTSMchat #QFT #BTSM
🧠Julia Robertson @Ailuj_Nostrebor
T4 Peace #BTSM
fschmnn @fschmnn
@BTSMchat Q4 my initial reaction is “a cure!” but I’m not sure that would do much to the issues that impact my daily life (fatigue, balance, vision issues) though I suppose it would dramatically reduce the “terminal” concerns from me and so many others. #btsm
Mariah Jae @MariahJaeee
@BTSMchat Q4: I don’t pray, but I’ve always talked with one of my best friends Amy about being older and retired and playing cards and I would love to make it to that. Sometimes I think that’s my goal- not super old age, but old enough to have felt like I got to live “it” all #BTSM
fschmnn @fschmnn
RT @BTSMchat: "What does quality of life even mean, really?" asked everyone with a brain tumor ever. #btsm
Ashley Love Sumrall, MD, FACP @AshleySumrallMD
@BTSMchat T4: Great q. Strength & patience. Endurance. Peace & comfort to cope w God’s will, esp if different than what I “think” I want. If Christian, I rec this book: Prayer by @timkellernyc #btsm
Jeremy Pivor @JeremyPivor
@BTSMchat T4: I wish to have the inner strength to always follow my values regardless of where my journey takes me. #btsm
Lizzy Hedgehog @LizzyHedgehog
@BTSMchat Q4: that there would be the same attention giving to “pink” breast cancer be given to “grey” brain tumors. #btsm
Aaron, still alive (for now) @amhoov
@MariahJaeee @BTSMchat This. So much, this! I’m always thinking to myself, “but, I’m not done yet!” #BTSM
h e a t h e r z e e 🇺🇸 @ZHeatherChamp
@fschmnn @MelissaMBlank That’s so awesome! #btsm
SeleneSeltzer @SeleneSeltzer
@TheLizArmy @BTSMchat T2: Yes! Finding purpose, making meaning and connecting with others... from my perspective is the essence of a spiritual life 🗝️❤️ #btsm
SeleneSeltzer @SeleneSeltzer
RT @TheLizArmy: @BTSMchat T2 part 2: Another coping strategy for me: DOING SOMETHING. I find serving on the board of directors for @NBTStw
🧠Julia Robertson @Ailuj_Nostrebor
@MelissaMBlank T2 I had a massive intraoperative bleed so ended up with a brainwash too :) #BTSM
SeleneSeltzer @SeleneSeltzer
RT @JeremyPivor: @ePatientDave @TheLizArmy @BTSMchat The more voices the better. Every person’s medical situation is different even for tho…
h e a t h e r z e e 🇺🇸 @ZHeatherChamp
@blank_steve @MelissaMBlank Thanks! Mine is https://t.co/iNmlbiWdAP #btsm
Cinnamonstick @cinnamini2016
RT @corrie_painter: Hi #btsm, I’m from Massachusetts, surviving a different cancer, angiosarcoma. Im also a scientist working across many…
GoodGollyMsMolly @Lifeiskitsch
@BTSMchat Q4/ weird, probably— I always think (I “think-pray”), “please come get me, mom— when it’s my time.” Usually I’m emotionally crying. I also pray to feel the shining light I’ve read about since I creeped librarians out as a child (I obsessively read books about NDEs & such). #btsm
Liz Salmi | #StayHome @TheLizArmy
@BTSMchat T4: I wish for science to advance at such a level my husband will stop suffering from PTSD related to my diagnosis. I wish to live a life full of meaning and badassery so that when my time comes no one will be sad for my death. I wish for espresso and gelato every day. #btsm
Liz Salmi | #StayHome @TheLizArmy
RT @BTSMchat: "What does quality of life even mean, really?" asked everyone with a brain tumor ever. #btsm https://t.co/6cz7EI3Zp4
fschmnn @fschmnn
@amhoov @MariahJaeee @BTSMchat Same here. I need to see more of the story unfold. #btsm
Dr. Sabine Schwab @Sabine_NJ
@BTSMchat T4: I pray to live long enough to see my daughter graduate. If I dare to wish for more, I’d love to live long enough to hold her baby one day (if she chooses to have one that is). #btsm
KateBats @KattyBatty1
@BTSMchat Q4: “thanks for yesterday and let everything be as good as it can be today.” That’s the morning prayer/mantra around here. Don’t want to push it and ask for too much. #BTSM
Liz Salmi | #StayHome @TheLizArmy
RT @MariahJaeee: @BTSMchat Q4: I don’t pray, but I’ve always talked with one of my best friends Amy about being older and retired and playi…
Steve Blank 🌻 @blank_steve
RT @ZHeatherChamp: @blank_steve @MelissaMBlank Thanks! Mine is https://t.co/iNmlbiWdAP #btsm
Sammy (Brain Tumour Warrior) @Sammy75J
@BTSMchat For a cure, I have friends I've met through this community dying around me, children & parents being diagnosed & going through torture, not knowing how to handle it. I also hope that cure isn't surgically based, after going through 3 of them & I wouldn't wish it on anyone #btsm
Liz Salmi | #StayHome @TheLizArmy
@fschmnn @amhoov @MariahJaeee @BTSMchat Same here! I want to live to be old enough where I can just sit around and read books in a hammock somewhere. #btsm
Dr. Sabine Schwab @Sabine_NJ
@JeremyPivor @BTSMchat Honorable goal! #btsm
Matt Cotcher @MLCotcher
A4: I pray daily that my heart & mind are open to love, kindness & joy. I also pray that I live my life in such a way that others seek similar peace and begin a relationship with God. If I can possibly help anyone do so, I consider it a privilege. #btsm
Liz Salmi | #StayHome @TheLizArmy
@Sabine_NJ @BTSMchat "to live long enough to hold her baby one day (if she chooses to have one that is)" 😭😭😭 I wish this for you too, @Sabine_NJ. #btsm
Sammy (Brain Tumour Warrior) @Sammy75J
@MelissaMBlank @Ailuj_Nostrebor Well, sign me up to then LOL #btsm
BTSM chat | #btsm @BTSMchat
Q4 (repeated): What is the number one thing you pray/wish for? #BTSM
🧠Julia Robertson @Ailuj_Nostrebor
@TheLizArmy @BTSMchat I feel you. My husband has changed his work location and times so that he can drive me to and from University and be nearby 'in case something happens' #BTSM
BTSM chat | #btsm @BTSMchat
RT @amhoov: T4: Obvs answer would be a cure. For me, it’s that the crazy changes I’ve made to my life and the experimental, repurposed drug…
John @hav77
@BTSMchat I wish that whoever is the next person to be DXed doesn't go through the same level of trials and tribulations that I did #btsm
BTSM chat | #btsm @BTSMchat
RT @MariahJaeee: @BTSMchat Q4: I don’t pray, but I’ve always talked with one of my best friends Amy about being older and retired and playi…
BTSM chat | #btsm @BTSMchat
RT @fschmnn: @BTSMchat Q4 my initial reaction is “a cure!” but I’m not sure that would do much to the issues that impact my daily life (fat…
BTSM chat | #btsm @BTSMchat
RT @JeremyPivor: @BTSMchat T4: I wish to have the inner strength to always follow my values regardless of where my journey takes me. #btsm
BTSM chat | #btsm @BTSMchat
RT @AshleySumrallMD: @BTSMchat T4: Great q. Strength & patience. Endurance. Peace & comfort to cope w God’s will, esp if different than wha…
BTSM chat | #btsm @BTSMchat
RT @LizzyHedgehog: @BTSMchat Q4: that there would be the same attention giving to “pink” breast cancer be given to “grey” brain tumors. #bt
BTSM chat | #btsm @BTSMchat
RT @SeleneSeltzer: @TheLizArmy @BTSMchat T2: Yes! Finding purpose, making meaning and connecting with others... from my perspective is the…
BTSM chat | #btsm @BTSMchat
RT @TheLizArmy: @BTSMchat T4: I wish for science to advance at such a level my husband will stop suffering from PTSD related to my diagnosi…
BTSM chat | #btsm @BTSMchat
RT @Sabine_NJ: @BTSMchat T4: I pray to live long enough to see my daughter graduate. If I dare to wish for more, I’d love to live long enou…
BTSM chat | #btsm @BTSMchat
RT @KattyBatty1: @BTSMchat Q4: “thanks for yesterday and let everything be as good as it can be today.” That’s the morning prayer/mantra ar…
BTSM chat | #btsm @BTSMchat
RT @Sammy75J: @BTSMchat For a cure, I have friends I've met through this community dying around me, children & parents being diagnosed & go…
BTSM chat | #btsm @BTSMchat
RT @MLCotcher: A4: I pray daily that my heart & mind are open to love, kindness & joy. I also pray that I live my life in such a way that o…
h e a t h e r z e e 🇺🇸 @ZHeatherChamp
A4: To not die alone. #btsm #RareDisease
John @hav77
@TheLizArmy @BTSMchat Internetz way of saying "Quoted for Truth!" #btsm
BTSM chat | #btsm @BTSMchat
RT @hav77: @BTSMchat I wish that whoever is the next person to be DXed doesn't go through the same level of trials and tribulations that I…
staying in to save lives @bermudababe76
@BTSMchat T4: outside of a cure/better treatments? When my mom was in decline, I prayed that her passing would be pain free & peaceful. Thankfully it was. Now I just want to have my mom come to me in a dream or ‘feel’ her presence around me - all of which has been elusive so far. #BTSM
I Live Now Rachel 💎 @KickBrainTumors
RT @Sammy75J: @BTSMchat For a cure, I have friends I've met through this community dying around me, children & parents being diagnosed & go…
SeleneSeltzer @SeleneSeltzer
RT @SP4acure: @MelissaMBlank @BTSMchat Hi 👋 My name is Sharon, I am in Richmond VA. I had a different type of cancer. I am here to listen a…
Melissa Blank @MelissaMBlank
RT @TheLizArmy: @BTSMchat T4: I wish for science to advance at such a level my husband will stop suffering from PTSD related to my diagnosi…
fschmnn @fschmnn
@hav77 @BTSMchat Yes! I went from “you’ll be ok” to “you’re gonna die in a few months” to “you’re gonna be mostly ok” to “sorry about all the deficits that keep getting worse”. Just make this journey predictable! And assure so many of us of longer lives. #btsm
Melissa Blank @MelissaMBlank
RT @LizzyHedgehog: @BTSMchat Q4: that there would be the same attention giving to “pink” breast cancer be given to “grey” brain tumors. #bt
SeleneSeltzer @SeleneSeltzer
RT @amhoov: T2: I think dx helps people find/make more meaning in their lives. Sometimes that’s through religion, sometimes not. As a profe…
SeleneSeltzer @SeleneSeltzer
RT @MelissaMBlank: T2: I've been quite open about needing help with mental health, both through chemical help (happy pills) and therapy. I…
🧠Julia Robertson @Ailuj_Nostrebor
Coincidentally, I had two religious doorknockers interrupt my @BTSMchat just now! #Btsm
John @hav77
@TheLizArmy @BTSMchat No, never Liz...lol. You're my hero and heroes don't get old. #btsm
BTSM chat | #btsm @BTSMchat
That’s a wrap. Thank you for joining the #BTSM tweetchat tonight. Your time, tweets and comments are greatly appreciated! Mark your calendars for next #BTSM chat: Sunday, April 5, at 6pm PT/9pm ET.
BTSM chat | #btsm @BTSMchat
Looking for more? Tune in to Brain Tumor Support Conversations⁠—virtual support group w/@lisaoleary524 & @adamhayden⁠—on Sun, March 15 at 4pPT/7pET. Patients, care partners, any brain tumor type, any stage of treatment can join! Register: https://t.co/6jD7TljyNt. #BTSM
BTSM chat | #btsm @BTSMchat
Wishes among the #BTSM community tonight: - to have the inner strength - find meaning - a cure - peace - agency - live long enough to feel you lived - next person doesn't go through this alone
Lizzy Hedgehog @LizzyHedgehog
RT @BTSMchat: Looking for more? Tune in to Brain Tumor Support Conversations⁠—virtual support group w/@lisaoleary524 & @adamhayden⁠—on Su…
BTSM chat | #btsm @BTSMchat
Thanks for joining us tonight. Tonight’s #BTSM chat topics were created by @Sabine_NJ with special help from the entire @BTSMchat organizer team.
Lizzy Hedgehog @LizzyHedgehog
RT @BTSMchat: Wishes among the #BTSM community tonight: - to have the inner strength - find meaning - a cure - peace - agency - live long e…
BTSM chat | #btsm @BTSMchat
RT @ZHeatherChamp: A4: To not die alone. #btsm #RareDisease
𝘾𝙝𝙧𝙞𝙨𝙩𝙞𝙣𝙚 𝙍𝙤𝙜𝙚𝙧𝙨, 𝙋𝙝𝘿 🌸🌱 🧬🧠 @preopticarea
RT @BTSMchat: Looking for more? Tune in to Brain Tumor Support Conversations⁠—virtual support group w/@lisaoleary524 & @adamhayden⁠—on Su…
Ashley Love Sumrall, MD, FACP @AshleySumrallMD
RT @BTSMchat: Looking for more? Tune in to Brain Tumor Support Conversations⁠—virtual support group w/@lisaoleary524 & @adamhayden⁠—on Su…
BTSM chat | #btsm @BTSMchat
Remember to use the #BTSM hashtag all month long for interesting healthcare/leadership posts, pics, articles and news.
BTSM chat | #btsm @BTSMchat
TRUTH #btsm
GoodGollyMsMolly @Lifeiskitsch
@BTSMchat Q4// over & over, when it’s my time— I pray for it not to be scary, to see my mom again (even if it’s just brain hallucinations!), for the light to be real, & to be remembered with love, as love. #btsm https://t.co/9BnLPUdBBb
John @hav77
@fschmnn @BTSMchat Agreed on predictability. It's the unpredictability and uncertainty that just looms over everything. If I'm not going to be ok, just tell me when and where and let me plan out my days accordingly. #btsm
𝘾𝙝𝙧𝙞𝙨𝙩𝙞𝙣𝙚 𝙍𝙤𝙜𝙚𝙧𝙨, 𝙋𝙝𝘿 🌸🌱 🧬🧠 @preopticarea
RT @BTSMchat: Wishes among the #BTSM community tonight: - to have the inner strength - find meaning - a cure - peace - agency - live long e…
🧠Julia Robertson @Ailuj_Nostrebor
The things that drive us....
Liz Salmi | #StayHome @TheLizArmy
@hav77 @BTSMchat 😭 #btsm https://t.co/w5f6u2XybE
SeleneSeltzer @SeleneSeltzer
RT @BTSMchat: T3: Do you think spirituality affects Quality of Life? #BTSM
Liz Salmi | #StayHome @TheLizArmy
RT @BTSMchat: Wishes among the #BTSM community tonight: - to have the inner strength - find meaning - a cure - peace - agency - live long e…
staying in to save lives @bermudababe76
@BTSMchat T4: I also hope that all the shit my family went through trying to get a crash course on brain cancer, surgery, clinical trials, treatment options, hospice, etc can be shared and help make the life of someone else who is facing this path a bit easier. #BTSM
BTSM chat | #btsm @BTSMchat
Tonight's top influencers of #BTSM: https://t.co/uPvesZLLY1
Liz Salmi | #StayHome @TheLizArmy
@AshleySumrallMD @BTSMchat @Sabine_NJ Thank you @Sabine_NJ!!! This was a very special topic and clearly we were in need of going deep. #btsm
Dr. Phil O'Halloran @philohalloran
@BTSMchat That clinicians/scientists/patients continue working together as a team to solve so many unanswered questions as well as providing comfort & support to patients/families 🧠! #BTSM
Lizzy Hedgehog @LizzyHedgehog
RT @BTSMchat: Tonight's top influencers of #BTSM: https://t.co/uPvesZLLY1
John @hav77
@BTSMchat Thank you! #btsm
Melissa Blank @MelissaMBlank
#btsmchat was fun tonight! I'm in a surprisingly good mood considering I at this very moment have THIRTY-THREE stitches in my head from my craniotomy a few days ago. This #btsm community really means a lot to me.
I Live Now Rachel 💎 @KickBrainTumors
Cool. Thanks for sharing!
Lizzy Hedgehog @LizzyHedgehog
@BTSMchat Sounds good #btsm
Aaron, still alive (for now) @amhoov
Good night, all. #BTSM always lifts my spirits!
John @hav77
@MelissaMBlank Sending the best...#btsm
I Live Now Rachel 💎 @KickBrainTumors
Great stuff! Have a beautiful week. March. New month. New beginning. #BTSM Start back physical therapy 🏃🏿‍♀️
Liz Salmi | #StayHome @TheLizArmy
@AshleySumrallMD @BTSMchat @StoryCorps One of the interesting "learning moments" was when David emailed me his doctor's notes at Mayo Clinic documenting the decision to bring in hospice. 3 years later I started working on open notes research... who knew I would learn so much from reading another pt's notes?! #btsm
Erica Robinson @eleighrobs
RT @BTSMchat: Wishes among the #BTSM community tonight: - to have the inner strength - find meaning - a cure - peace - agency - live long e…
SeleneSeltzer @SeleneSeltzer
@BTSMchat T3: I feel that spirituality is very misunderstood. Taking the time to slow down w/someone willing to deeply listen often brings a sense of deep relaxation, comfort + relief. To me that is a spiritual moment. #btsm
Erica Robinson @eleighrobs
@Ailuj_Nostrebor @BTSMchat That wasn't a coincidence. #BTSM
Dr. Sabine Schwab @Sabine_NJ
@TheLizArmy @BTSMchat Thank you! My mom died of cancer at the age of 41. While she was there when I graduated high school, she missed all of my other graduations and me being pregnant (or should I say I missed her?!) #btsm #cancersucks
Dave deBronkart @ePatientDave
@BTSMchat @TheLizArmy #btsm T2 I had quite a range of attitudinal things I did to cope w "probable but not certain" death. (Best estimate @ dx: median survival 24 wks.) Here's a 35 minute video I did for @MayoHumanities. Around 25:15 is an 8 minute reading. https://t.co/AJAAW3Lpi9
Melissa Blank @MelissaMBlank
@Sammy75J Hi Sammy, nice to meet you as well (all things considered). I don't know yet how this scar is going to turn out, but it is considerably longer than the previous two. Finding our way through this is the hard part, but I'm glad we can make a community through all of this hell #btsm
National Brain Tumor Society @NBTStweets
RT @TheLizArmy: @BTSMchat T2 part 2: Another coping strategy for me: DOING SOMETHING. I find serving on the board of directors for @NBTStw
Sammy (Brain Tumour Warrior) @Sammy75J
btw #BTSM chatters, the whole month of March in the UK is Brain tumour awareness month, so if you see any interesting tweets please feel free to retweet them x Thanks for letting me join in tonight. x
SeleneSeltzer @SeleneSeltzer
@Sabine_NJ @BTSMchat #btsm
Steve Blank 🌻 @blank_steve
@Sammy75J @MelissaMBlank She's in a fair amount of pain. Swelling, not so much. But she will rock one hell of a road warrior worthy scar! Kudos to her neuro surgeon for a beautiful surgery! #btsm #glioblastoma https://t.co/kXUs8zM90w
#BTSM content from Twitter.