#BTSM Transcript
Healthcare social media transcript of the #BTSM hashtag.
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See #BTSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | #BTSM chat @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 tonightโs conversation. |
 | SeleneSeltzer @SeleneSeltzer RT @BTSMchat: Less than 10 minutes! Looking forward to a great chat! #btsm |
| #BTSM chat @BTSMchat Tonight on #BTSM, weโre 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 |
| #BTSM chat @BTSMchat Helping to keep the chat flowing is the one and only @TheLizArmy! The #BTSM organizing team also includes @lisaoleary524 @adamhayden @cblotner_ & @JeremyPivor. |
 | Aaron @amhoov @BTSMchat Self-deprecation is MY jam (apparently). #btsm |
| #BTSM chat @BTSMchat Letโs start our chat with introductions! What is your name? Where are you based? Who are you? Why are you here? Tweet #BTSM if youโre only here to listen. Welcome everyone! |
| Aaron @amhoov @fschmnn The random grievances are my favorite. Followed closely by the music. #BTSM |
| #BTSM chat @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 @BTSMchat #BTSM (brain tumor social media) is a patient-run, grassroots Twitter community and is not owned by any organization. |
 | Liz Salmi @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 |
| Aaron @amhoov Iโm Aaron in Boston. GBM 4 diagnosed in April. Here for camaraderie and to share my story as well. #BTSM |
| #BTSM chat @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 @TheLizArmy @LizzyHedgehog @BTSMchat Welcome Lizzy! It's great to see you back. How's Sonic life? #btsm |
| Liz Salmi @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! |
| Liz Salmi @TheLizArmy @amhoov Almost at the 12 month mark! Way to go. #btsm |
| #BTSM chat @BTSMchat While intros continue, letโs 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 @amhoov @bermudababe76 @BTSMchat Welcome, Robyn! Iโm sorry to hear about your mom. Glad youโre bringing a bit of her to us via the chat. #btsm |
| #BTSM chat @BTSMchat Watch this orange #BTSM avatar for the 4 topics weโll be discussing. Topics are labeled T1, T2, T3 and T4. Please label your answers with T1, T2, etc to make conversation easier to follow. |
 | Steve Blank ๐ป @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 |
 | ๐ง Julia Robertson @Ailuj_Nostrebor @BTSMchat Julia, Brisbane, Australia. I'm a patient, advocate, researcher and carer. Brains are my jam :) #BTSM |
| #BTSM chat @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 Iโm an APN committed to helping my patients live their best lives. Here to listen/learn! #btsm |
 | Matt Cotcher @MLCotcher Welcome, everyone! Matt C, here (Georgia, USA) - 2x ependymoma survivor (2007 & 2017). #btsm |
 | KateWhy @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 @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 |
 | Saving Pennies 4 A Cure @SP4acure #btsm |
| #BTSM chat @BTSMchat We have a lot of remarkable folks with us tonight and lots of ideas will be shared โ please try to stay on topic. #BTSM |
 | St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat Hey! I almost forgot! Molly. Dx October 2016โ Anaplastic Astrocytoma. Stable so far since then & all the radiation & Temodar. Am a Chatty McChatterson. #BTSM https://t.co/bz1rhqwmOh |
| #BTSM chat @BTSMchat RT @amhoov: Iโm Aaron in Boston. GBM 4 diagnosed in April. Here for camaraderie and to share my story as well. #BTSM |
| #BTSM chat @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 tonightโs chat. #BTSM |
| #BTSM chat @BTSMchat RT @SeanSachdevMD: @BTSMchat Hi all #radonc here, hoping to listen in and learn from those who voice their opinions. #btsm |
| #BTSM chat @BTSMchat Letโs get ready for T1 in just 1 minute. #BTSM |
| #BTSM chat @BTSMchat @blank_steve @MelissaMBlank Jump in anytime, Steve! #btsm ๐ |
 | Erica Robinson @eleighrobs @BTSMchat Hi friends! Erica here, from Boston. @NBTStweets @NewEnglandNBTS Advocate. Survivor. Team captain. #BTSM |
| Steve Blank ๐ป @blank_steve #btsm |
| #BTSM chat @BTSMchat RT @MLCotcher: Welcome, everyone! Matt C, here (Georgia, USA) - 2x ependymoma survivor (2007 & 2017). #btsm |
| #BTSM chat @BTSMchat RT @SazrahB: Iโm an APN committed to helping my patients live their best lives. Here to listen/learn! #btsm |
| #BTSM chat @BTSMchat RT @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 |
 | Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat Iโm Sabine. Busy tweeting from @BTSMchat chat tonight. Lol #btsm |
| #BTSM chat @BTSMchat RT @KattyBatty1: @BTSMchat #BTSM. NJ mom to the 2x surgery Teen. Listening tonight while simultaneously helping said Teen look for an after-school job. |
| #BTSM chat @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 @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 helps me to connect with people who know what it is like to face a brain tumor (because I have one too). #btsm |
| #BTSM chat @BTSMchat RT @realBloodyQQ: |
| #BTSM chat @BTSMchat RT @Lifeiskitsch: @BTSMchat Hey! I almost forgot! Molly. Dx October 2016โ Anaplastic Astrocytoma. Stable so far since then & all the radiation & Temodar. Am a Chatty McChatterson. #BTSM https://t.co/bz1rhqwmOh |
| #BTSM chat @BTSMchat RT @Sabine_NJ: @BTSMchat Iโm Sabine. Busy tweeting from @BTSMchat chat tonight. Lol #btsm |
| #BTSM chat @BTSMchat RT @eleighrobs: @BTSMchat Hi friends! Erica here, from Boston. @NBTStweets @NewEnglandNBTS Advocate. Survivor. Team captain. #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch Hey, Tweeter folks! My feed about to go crazy with brain chatter from 9-10pm EST tonight! #BTSM |
 | Dear Dr. Researcher, PhD @corrie_painter Hi #btsm, Iโm from Massachusetts, surviving a different cancer, angiosarcoma. Im also a scientist working across many cancers including brain cancer. Iโm here to listen and learn. |
 | I Live Now Rachel ๐ @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. Life๐ง #BTSM Faith. @HYHUTriangle |
| Liz Salmi @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 @amhoov T1: I waffle between atheism and agnosticism. (Canโt even make up my mind about making up my mind!). To extent that itโs spiritual, Iโve been trying to meditate daily. #btsm |
| Liz Salmi @TheLizArmy @fschmnn @BTSMchat Wow, that must be quite a trip from TN? #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat T1: Yes! Itโs a big part in my day-to-day. Being diagnosed deepened my faith even more. #btsm |
| Liz Salmi @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 |
| ๐ง 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 |
| #BTSM chat @BTSMchat @MelissaMBlank Hi Melissa! Glad you are joining us. Remember to add the hashtag so everyone can find your tweets. #BTSM |
| #BTSM chat @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 months. I'm here bc I like talking to people who understand, but also bc some of us have really cool scars! |
| Melissa Blank @MelissaMBlank @amhoov Finding a meditation practice has helped me immensely. #btsm |
| #BTSM chat @BTSMchat RT @corrie_painter: Hi #btsm, Iโm from Massachusetts, surviving a different cancer, angiosarcoma. Im also a scientist working across many cancers including brain cancer. Iโm here to listen and learn. |
| #BTSM chat @BTSMchat RT @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. Life๐ง #BTSM Faith. @HYHUTriangle |
 | Mariah Jae @MariahJaeee @BTSMchat T1: Iโm 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 donโt live spiritually #BTSM |
| Melissa Blank @MelissaMBlank SAME #btsm |
| #BTSM chat @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 @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 โ07. #btsm |
 | ๐ Lizzy Hedgehog ๐ @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 |
 | Vaxed, mask-wearing globetrotter ๐ฐ๐พ๐บ๐ธ๐ฌ๐ง @bermudababe76 @BTSMchat T1 This is tough. I have really struggled since my momโs death with the idea that God/a higher being is out there. Iโm angry. And sad. A lot. But I do feel a connection in a spiritual way to nature - Iโve always been that way. Now the ocean has been my safe Harbour. #BTSM |
| Liz Salmi @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 |
| St_Molly_AgentofChaos @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 |
| Liz Salmi @TheLizArmy @amhoov I think I am a devout agnostic. ๐ #btsm |
| #BTSM chat @BTSMchat RT @MelissaMBlank: T1: 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 |
| #BTSM chat @BTSMchat RT @realBloodyQQ: |
| 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 @amhoov @eleighrobs @BTSMchat I love this image! #BTSM |
| Melissa Blank @MelissaMBlank We all cope in our own ways. Nothing wrong with that. #btsm |
| ๐ง Julia Robertson @Ailuj_Nostrebor @MelissaMBlank I've been working my way through that one too #btsm |
| Liz Salmi @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 |
| #BTSM chat @BTSMchat RT @MLCotcher: A1: 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 โ07. #btsm |
| Sarah @SazrahB T1: I donโt bring it up but if my patient does, Iโm supportive. Important for me to not seem at all like Iโm 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. rer. pol.Sabine Schwab @Sabine_NJ @Lifeiskitsch @BTSMchat I had the same experience when my mom died! Interesting how it can be so different, my momโs death pushed my sister out completely from anything church-related... #btsm |
| Aaron @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 |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T1, Part Deux. Like, Iโm not โreligious.โ Iโm something-y. I just feel... differently about death, dying & all-a that stuff. I donโt now what I believe, but I know itโs good & it started w/ that MRI experience... (a talk w/something, & I got to choose my path forward). ๐คทโโ๏ธ #BTSM |
| #BTSM chat @BTSMchat @MelissaMBlank Share a link to that blog post! #btsm |
| #BTSM chat @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 like it does. #BTSM |
| Dr. rer. pol.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. Itโs yoga and meditation and healthy nutrition too #btsm |
| Sean Sachdev, MD @SeanSachdevMD @amhoov @TheLizArmy @BTSMchat way to go @CrossFit #btsm |
 | Christine Choan, PhD ๐งฌ๐ง @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 |
| #BTSM chat @BTSMchat Great discussion so far! Letโs 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 โ to the moment, to self, to others, to nature + to the Sacred โ however it manifests for you. #btsm |
| ๐ง 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 @amhoov @fschmnn It really gets into all the cracks, doesnโt it? #BTSM |
| Liz Salmi @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. rer. pol.Sabine Schwab @Sabine_NJ @SeleneSeltzer @BTSMchat This! #btsm |
| #BTSM chat @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: Iโve 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 ๐ป @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 - ืืื @Project2Program @BTSMchat Sorry all, but I canโt join tonight. Iโll look at the topics and responses later. Love from Susie and myself! #BTSM |
| #BTSM chat @BTSMchat Thank you all for sharing your deeply personal experiences. We're learning a lot tonight... #btsm ๐โค๏ธ๐ |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat T2: Iโm a big control freak, and my religious beliefs help me to accept that I am not in control. #btsm |
| ๐ง 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, FASCO @AshleySumrallMD @BTSMchat Q1. Yes, I discuss faith. One of my favorite parts of treating pts w brain tumors is how illness intersects w faith. Iโm Christian, but I think all faiths offer comfort & (maybe) improved survival #btsm |
| Aaron @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. Thereโs no greater purpose or plan to me or my struggles itโs all just part of the great chaos and randomness of life. Iโm mad enough at myself I canโt imagine being mad at a god #BTSM |
| Erica Robinson @eleighrobs @TheLizArmy @BTSMchat Awwww!โค๏ธExactly. Peace of mind. Literally! #BTSM |
 | Heather ๐บ๐ธ @ZHeatherChamp @BTSMchat A1: During my recovery I wasnโt ever mad at God, I just didnโt care about anything. Nothing. Nada. #btsm |
| ๐ Lizzy Hedgehog ๐ @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. Itโs hard to be a survivor sometimes in a cruel world. #btsm |
| Liz Salmi @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 water. Kisses. They are all rituals which give us peace of mind. #BTSM https://t.co/RCC6NU1lqB |
| 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 @BTSMchat Mic drop. #btsm ๐๐๐ |
| Saving Pennies 4 A Cure @SP4acure @MelissaMBlank @BTSMchat Hi ๐ 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 |
| St_Molly_AgentofChaos @Lifeiskitsch @eleighrobs @BTSMchat I hadnโt been to church in years but we went to St. Bonaventure in Detroit for the Blessing of the Sick & see if maybe Solanus Casey (heโs one step away from catholic sainthood!) could give us a quick fix. @FrSolanusCasey #BTSM |
| Vaxed, mask-wearing globetrotter ๐ฐ๐พ๐บ๐ธ๐ฌ๐ง @bermudababe76 @BTSMchat T2 #BTSM I run marathons to help me keep moving forward. It was something I did before my momโs diagnosis; in all honesty Iโve struggled in running consistently since her death. Iโve 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: 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 |
| 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 @amhoov T2: I think dx helps people find/make more meaning in their lives. Sometimes thatโs through religion, sometimes not. As a professor, itโs helped me have more empathy for my students. Sometimes feels like a revelation. #btsm |
| #BTSM chat @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, FASCO @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 โlegacy journalsโ such as: Story of My Life: A Workbook for Preserving Your Legacy https://t.co/2Gkm0lzm3d |
| Liz Salmi @TheLizArmy @Sabine_NJ @BTSMchat ๐โโ๏ธAlso 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: T2: I think dx helps people find/make more meaning in their lives. Sometimes thatโs through religion, sometimes not. As a professor, itโs helped me have more empathy for my students. Sometimes feels like a revelation. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T2: @StoryCorps is another great way to preserve/ share memories #btsm |
| Aaron @amhoov @TheLizArmy @Sabine_NJ @BTSMchat OMG - so true! But, we only had the *illusion* of control beforeโฆ #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @eleighrobs @BTSMchat @FrSolanusCasey #btsm https://t.co/ExMe5D1V5N |
| Erica Robinson @eleighrobs @TheLizArmy @Sabine_NJ @BTSMchat ๐โโ๏ธ#BTSM |
| Dr. rer. pol.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 โreligious,โ but can connect on the level of spirituality to go into deeper reflection. Itโll make her a great doctor. #btsm |
| Matt Cotcher @MLCotcher A2: I donโt think of it as โcopingโ 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 |
| Liz Salmi @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 ๐ฆ @subatomicdoc RT @BTSMchat: T2: 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 |
| KateWhy @KattyBatty1 @BTSMchat T1. This topic reminded me โboth times in recovery this was the view from the Teenโs 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" |
| Heather ๐บ๐ธ @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 @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 Choan, PhD ๐งฌ๐ง @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 |
| Dear Dr. Researcher, 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 @NBTStweets a very rewarding and meaningful way of giving back to this community. Science + research + advocacy = moving the ball forward on finding treatments. #btsm |
| #BTSM chat @BTSMchat If you are here tonight to just listen, please tweet โ#BTSMโ so we know youโre in the audience. |
| Aaron @amhoov @ZHeatherChamp @MelissaMBlank Yep. Blog for me has been incredibly helpful. Writing is feeling/thinking. #btsm |
| Dear Dr. Researcher, PhD @corrie_painter #btsm |
| #BTSM chat @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 ๐คฃ |
| #BTSM chat @BTSMchat Really interesting tweets on #BTSM right now. Letโs get ready for T3 in just 1 minute! |
| Liz Salmi @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 |
| St_Molly_AgentofChaos @Lifeiskitsch T2: I cope by talking about death & dying a lot. Iโm fascinated by it. I figure if I can get on good terms with it, then I wonโt 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 |
| Liz Salmi @TheLizArmy @fschmnn Co sign! #btsm |
| #BTSM chat @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. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: T3: 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 @TheLizArmy @hav77 @BTSMchat ๐๐๐ Hello, my friend! Great to "see" you tonight. #btsm |
| #BTSM chat @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 Choan, PhD ๐งฌ๐ง @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. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat T3: For me, personally, it does. Iโm more stressed and have more symptoms, if I do not pray or meditate or do yoga regularly. Itโs 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 personโs 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 @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. ๐ #btsm |
| #BTSM chat @BTSMchat RT @Lifeiskitsch: T2: T2: I cope by talking about death & dying a lot. Iโm fascinated by it. I figure if I can get on good terms with it, then I wonโt 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 |
 | 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 ๐ @pattigauvin #BTSM |
| St_Molly_AgentofChaos @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 |
 | ๐๐ค๐๐๐๐๐ @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 |
 | Garth Nicholas @Garth_Nicholas1 @BTSMchat #BTSM |
| #BTSM chat @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: 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 |
| I Live Now Rachel ๐ @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 ๐ป @blank_steve RT @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 |
| Ashley Love Sumrall, MD, FACP, FASCO @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 Iโm renewed through faith, prayer. I find that many of my patients rely on faith as well |
| #BTSM chat @BTSMchat Repeat of question T3: Do you think spirituality affects Quality of Life? #BTSM |
| #BTSM chat @BTSMchat During an otherwise deep (and possibly serious) tweet chat, @MelissaMBlank wins with this tweet... #btsm |
 | CNO2020 @CNO2020_Ottawa @BTSMchat #BTSM |
| Steve Blank ๐ป @blank_steve You go honey! |
| Matt Cotcher @MLCotcher A3: I am at peace and that is because of my spirituality. I canโt imagine facing things without spirituality but recognize that many folks do. I wouldnโt give up my spirituality but am happy to see so many finding their way by other means. #btsm |
| I Live Now Rachel ๐ @KickBrainTumors T2: All of my surgeries and hope connected with my faith in believing, that no matter what, I would be okay. #BTSM |
| Aaron @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 Choan, PhD ๐งฌ๐ง @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 @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 |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T3/ Maybe? Maybe not. Maybe? I donโt know if โspiritualityโ affects QOL so much as accepting death as part of life. There is a comfort in the feeling that lifeโ our individual, piddly little livesโ might have a purpose beyond our present knowing. I think that comforts. #BTSM |
| Liz Salmi @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 @BTSMchat Almost time for our final question. Letโs 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 @BTSMchat @Garth_Nicholas1 Thanks for joining us, Garth. Jump in at any time. #btsm |
| #BTSM chat @BTSMchat RT @AshleySumrallMD: @BTSMchat T3: @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 Iโm renewed through faith, prayer. I find that many of my patients rely on faith as well |
| #BTSM chat @BTSMchat @CNO2020_Ottawa Glad you could join us! #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @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 ๐ @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 probably the best thing I have ever been part of in my entire life. #btsm https://t.co/GKQKxmQkvO |
| #BTSM chat @BTSMchat Q4: What is the number one thing you pray/wish for? #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: Q4: Q4: What is the number one thing you pray/wish for? #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @eleighrobs @BTSMchat @FrSolanusCasey (Tbh, I donโt pray to be cured myself. I think itโs a part of my job here, it gives me purpose. Thatโs something. And people think thatโs weird & thatโs fine. At the very least, it gives me some peace with the things I canโt control by giving me a job doing things I can. #btsm) |
| ๐ง 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 @BTSMchat "What does quality of life even mean, really?" asked everyone with a brain tumor ever. #btsm |
| Aaron @amhoov T4: Obvs answer would be a cure. For me, itโs that the crazy changes Iโve 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 |
| ๐ง Julia Robertson @Ailuj_Nostrebor T4 Peace #BTSM |
| Mariah Jae @MariahJaeee @BTSMchat Q4: I donโt pray, but Iโve 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 thatโs my goal- not super old age, but old enough to have felt like I got to live โitโ all #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T4: Great q. Strength & patience. Endurance. Peace & comfort to cope w Godโs will, esp if different than what I โthinkโ 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 |
| Aaron @amhoov @MariahJaeee @BTSMchat This. So much, this! Iโm always thinking to myself, โbut, Iโm not done yet!โ #BTSM |
| Heather ๐บ๐ธ @ZHeatherChamp @fschmnn @MelissaMBlank Thatโs 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 ๐๏ธโค๏ธ #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 @NBTStweets a very rewarding and meaningful way of giving back to this community. Science + research + advocacy = moving the ball forward on finding treatments. #btsm |
| ๐ง 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 personโs 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 |
| Heather ๐บ๐ธ @ZHeatherChamp @blank_steve @MelissaMBlank Thanks! Mine is https://t.co/iNmlbiWdAP #btsm |
 | Cinnamonstick @cinnamini2016 RT @corrie_painter: Hi #btsm, Iโm from Massachusetts, surviving a different cancer, angiosarcoma. Im also a scientist working across many cancers including brain cancer. Iโm here to listen and learn. |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat Q4/ weird, probablyโ I always think (I โthink-prayโ), โplease come get me, momโ when itโs my time.โ Usually Iโm emotionally crying. I also pray to feel the shining light Iโve read about since I creeped librarians out as a child (I obsessively read books about NDEs & such). #btsm |
| Liz Salmi @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 @TheLizArmy RT @BTSMchat: "What does quality of life even mean, really?" asked everyone with a brain tumor ever. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat T4: I pray to live long enough to see my daughter graduate. If I dare to wish for more, Iโd love to live long enough to hold her baby one day (if she chooses to have one that is). #btsm |
| KateWhy @KattyBatty1 @BTSMchat Q4: โthanks for yesterday and let everything be as good as it can be today.โ Thatโs the morning prayer/mantra around here. Donโt want to push it and ask for too much. #BTSM |
| Liz Salmi @TheLizArmy RT @MariahJaeee: @BTSMchat Q4: @BTSMchat Q4: I donโt pray, but Iโve 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 thatโs my goal- not super old age, but old enough to have felt like I got to live โitโ all #BTSM |
| Steve Blank ๐ป @blank_steve RT @ZHeatherChamp: @blank_steve @MelissaMBlank Thanks! Mine is https://t.co/iNmlbiWdAP #btsm |
| Liz Salmi @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. rer. pol.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 @TheLizArmy @Sabine_NJ @BTSMchat "to live long enough to hold her baby one day (if she chooses to have one that is)" ๐ญ๐ญ๐ญ I wish this for you too, @Sabine_NJ. #btsm |
| #BTSM chat @BTSMchat Q4 (repeated): What is the number one thing you pray/wish for? #BTSM |
| ๐ง 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 @BTSMchat RT @amhoov: T4: T4: Obvs answer would be a cure. For me, itโs that the crazy changes Iโve made to my life and the experimental, repurposed drug cocktail I take are actually doing something. In short, agency! #btsm |
| #BTSM chat @BTSMchat RT @MariahJaeee: @BTSMchat Q4: @BTSMchat Q4: I donโt pray, but Iโve 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 thatโs my goal- not super old age, but old enough to have felt like I got to live โitโ all #BTSM |
| #BTSM chat @BTSMchat RT @JeremyPivor: @BTSMchat T4: @BTSMchat T4: I wish to have the inner strength to always follow my values regardless of where my journey takes me. #btsm |
| #BTSM chat @BTSMchat RT @AshleySumrallMD: @BTSMchat T4: @BTSMchat T4: Great q. Strength & patience. Endurance. Peace & comfort to cope w Godโs will, esp if different than what I โthinkโ I want. If Christian, I rec this book: Prayer by @timkellernyc #btsm |
| #BTSM chat @BTSMchat RT @SeleneSeltzer: @TheLizArmy @BTSMchat T2: @TheLizArmy @BTSMchat T2: Yes! Finding purpose, making meaning and connecting with others... from my perspective is the essence of a spiritual life ๐๏ธโค๏ธ #btsm |
| #BTSM chat @BTSMchat RT @TheLizArmy: @BTSMchat T4: @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 |
| #BTSM chat @BTSMchat RT @Sabine_NJ: @BTSMchat T4: @BTSMchat T4: I pray to live long enough to see my daughter graduate. If I dare to wish for more, Iโd love to live long enough to hold her baby one day (if she chooses to have one that is). #btsm |
| #BTSM chat @BTSMchat RT @KattyBatty1: @BTSMchat Q4: @BTSMchat Q4: โthanks for yesterday and let everything be as good as it can be today.โ Thatโs the morning prayer/mantra around here. Donโt want to push it and ask for too much. #BTSM |
| #BTSM chat @BTSMchat RT @Sammy75J: |
| #BTSM chat @BTSMchat RT @MLCotcher: A4: 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 |
| Heather ๐บ๐ธ @ZHeatherChamp A4: To not die alone. #btsm #RareDisease |
| Vaxed, mask-wearing globetrotter ๐ฐ๐พ๐บ๐ธ๐ฌ๐ง @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 โfeelโ her presence around me - all of which has been elusive so far. #BTSM |
| I Live Now Rachel ๐ @KickBrainTumors RT @Sammy75J: |
| SeleneSeltzer @SeleneSeltzer RT @SP4acure: @MelissaMBlank @BTSMchat Hi ๐ 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 |
| Melissa Blank @MelissaMBlank RT @TheLizArmy: @BTSMchat T4: @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 |
| SeleneSeltzer @SeleneSeltzer RT @amhoov: T2: T2: I think dx helps people find/make more meaning in their lives. Sometimes thatโs through religion, sometimes not. As a professor, itโs helped me have more empathy for my students. Sometimes feels like a revelation. #btsm |
| SeleneSeltzer @SeleneSeltzer RT @MelissaMBlank: T2: 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 |
| ๐ง Julia Robertson @Ailuj_Nostrebor Coincidentally, I had two religious doorknockers interrupt my @BTSMchat just now! #Btsm |
| #BTSM chat @BTSMchat Thatโs 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 @BTSMchat Looking for more? Tune in to Brain Tumor Support Conversationsโ โvirtual support group w/@lisaoleary524 & @adamhaydenโ โon 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 @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 |
| #BTSM chat @BTSMchat Thanks for joining us tonight. Tonightโs #BTSM chat topics were created by @Sabine_NJ with special help from the entire @BTSMchat organizer team. |
| #BTSM chat @BTSMchat RT @ZHeatherChamp: A4: A4: To not die alone. #btsm #RareDisease |
| Christine Choan, PhD ๐งฌ๐ง @preopticarea RT @BTSMchat: Looking for more? Tune in to Brain Tumor Support Conversationsโ โvirtual support group w/@lisaoleary524 & @adamhaydenโ โon 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 |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD RT @BTSMchat: Looking for more? Tune in to Brain Tumor Support Conversationsโ โvirtual support group w/@lisaoleary524 & @adamhaydenโ โon 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 @BTSMchat Remember to use the #BTSM hashtag all month long for interesting healthcare/leadership posts, pics, articles and news. |
| #BTSM chat @BTSMchat TRUTH #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat Q4// over & over, when itโs my timeโ I pray for it not to be scary, to see my mom again (even if itโs just brain hallucinations!), for the light to be real, & to be remembered with love, as love. #btsm https://t.co/9BnLPUdBBb |
| Christine Choan, PhD ๐งฌ๐ง @preopticarea RT @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 |
| ๐ง Julia Robertson @Ailuj_Nostrebor The things that drive us.... |
| Liz Salmi @TheLizArmy @hav77 @BTSMchat ๐ญ #btsm https://t.co/w5f6u2XybE |
| SeleneSeltzer @SeleneSeltzer RT @BTSMchat: T3: T3: Do you think spirituality affects Quality of Life? #BTSM |
| Liz Salmi @TheLizArmy RT @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 |
| Vaxed, mask-wearing globetrotter ๐ฐ๐พ๐บ๐ธ๐ฌ๐ง @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 @BTSMchat Tonight's top influencers of #BTSM: https://t.co/uPvesZLLY1 |
| Liz Salmi @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 |
| 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 ๐ @KickBrainTumors Cool. Thanks for sharing! |
| ๐ Lizzy Hedgehog ๐ @LizzyHedgehog @BTSMchat Sounds good #btsm |
| Aaron @amhoov Good night, all. #BTSM always lifts my spirits! |
| I Live Now Rachel ๐ @KickBrainTumors Great stuff! Have a beautiful week. March. New month. New beginning. #BTSM Start back physical therapy ๐๐ฟโโ๏ธ |
| Liz Salmi @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 enough to feel you lived - next person doesn't go through this alone |
| SeleneSeltzer @SeleneSeltzer @BTSMchat T3: I feel that spirituality is very misunderstood. Taking the time to slow down w/someone willingย 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. rer. pol.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 @NBTStweets a very rewarding and meaningful way of giving back to this community. Science + research + advocacy = moving the ball forward on finding treatments. #btsm |
| SeleneSeltzer @SeleneSeltzer @Sabine_NJ @BTSMchat #btsm |
| Steve Blank ๐ป @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 |
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