#BTSM Transcript
Healthcare social media transcript of the #BTSM hashtag.
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See #BTSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | NCI Cancer Stats @NCICancerStats Brain and other nervous system #cancer is most frequently diagnosed among people aged 55-64. More info here: https://t.co/Cde67D0Mpf #BTSM https://t.co/GCI9yTN46G |
 | Liz Salmi @TheLizArmy Expect increased tweet activity from me over the next 60 minutes as I participate in the brain tumor community tweet chat (#BTSM). Feel free to join us! |
| Liz Salmi @TheLizArmy @brianatennant @BTSMchat Is your surgery tomorrow?! #BTSM |
 | Erica Robinson @eleighrobs @brianatennant @TheLizArmy @BTSMchat I see that! Thinking about you. #BTSM |
 | Lisa O'Leary @lisaoleary524 Lisa here. Former care partner for my husband Patrick - GBM dx 9/2014, passed away 7/2015. Now an advocate for the BT community. #BTSM |
 | Sheriff Tennant @brianatennant @TheLizArmy @BTSMchat Surgery is Tuesday #btsm |
 | Charlie Blotner @CBlotner_ @BTSMchat Hi all - Charlie in Seattle, here. MSW student, frequent dog sitter, and nearly 6yrs post awake cranio for grade II astro. #btsm |
 | Sarah Funes Ozturk @SarahFunes Hey everyone I'm Sarah. Recent @UCBerkeley grad I was dx in 2002 with a polycystic astrocytoma grade 2. (1 of 2) #btsm |
 | Kendra K @KMJtravels @BTSMchat Kendra joining in from Lake Wildwood,CA this month #btsm |
| Sarah Funes Ozturk @SarahFunes I went thru 2 rounds of chemo neither worked. Resection took place in 2003. (2 of 2) #btsm |
 | St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat Howdy! Molly from Detroit. Grade 3 Anaplastic Astrocytoma, diagnosed in October 2016. Full works. Tumor (Deep) left temporal lobe, creeping into hippocampus. Patient at Henry Ford Hospital/Detroit. #BTSM |
| Erica Robinson @eleighrobs @BTSMchat Erica here. Brain tumor survivor, advocate for @NBTStweets @NewEnglandNBTS team captain, and I sound like a broken record. 😆 #BTSM |
 | Matt Cotcher @MLCotcher I'm glad everyone's here! My name is Matt and I'm an 11 year brain stem ependymoma veteran. I had a recurrence in 2017, but so far this year all scans are clear. I'm looking forward to everyone's input tonight. #btsm |
| Liz Salmi @TheLizArmy @brianatennant @BTSMchat I feel like we should have brought you a cake or something to recognize this wild occasion. #BTSM https://t.co/awwu8BEP3h |
 | Dr. Vicky Forster @vickyyyf Hello, I'm Vicky and I'm a pediatric cancer research scientist @SickKidsNews in Toronto. At the moment one of my projects is studying pediatric #Glioblastoma and possible new treatments for these. I'm also a childhood cancer survivor (leukemia). Looking forward to learing! #BTSM https://t.co/oznscYQaL6 |
| Charlie Blotner @CBlotner_ @brianatennant Wow, there a few days early for pre op tests then? How are you feeling about surgery? #btsm |
| Liz Salmi @TheLizArmy @LisaJaayyy Oh my goodness! ... And welcome to Keppra. #btsm |
| Lisa O'Leary @lisaoleary524 @eleighrobs @BTSMchat @NBTStweets @NewEnglandNBTS I feel that way too, Erica! #BTSM |
| Erica Robinson @eleighrobs @TheLizArmy @brianatennant @BTSMchat Love! #BTSM |
| Erica Robinson @eleighrobs @lisaoleary524 @BTSMchat @NBTStweets @NewEnglandNBTS Right?! #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat Liz here. 10 years living w/grade II astrocytoma. 2 craniotomies. 24 months Temodar. 8yrs of watch and wait. Now my goal is to get my brain tumor homies together to research better ways to improve our care. https://t.co/6bTFwwuzYN #BTSM #btsmqol |
 | Beth Fand Incollingo @FandIncollingo CURE magazine editor here! We go out to patients, survivors and their caregivers affected by cancer. #BTSM |
| Sheriff Tennant @brianatennant @BTSMchat #btsm Brian dx in 2010, I have been doing fine up until the last couple of weeks when fluid in my brain started putting pressure on things and causing me problems. I am scheduled for a ventricularplasty on Tuesday. As a result I am currently tweeting from the hospital |
| Lisa O'Leary @lisaoleary524 @FandIncollingo Thanks for being with us Beth #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch ** FYI, I’ll be talking about BRAIN CANCER a lot for the next hour. It’s our #BTSM monthly chat. ** |
| Liz Salmi @TheLizArmy @SarahFunes @UCBerkeley Congrats on your graduation! What's next for you? #btsm |
| Sarah Funes Ozturk @SarahFunes @TheLizArmy Thanks! I will be traveling later this month with my partner then start my job as an admin at a wheelchair repair shop. #btsm |
| Matt Cotcher @MLCotcher "I'm tweeting from the hospital" = BOSS #btsm |
 | Victoria @V_BBurns @BTSMchat Victoria here! Just passed (on July 31st) the 9th anniversary of my brain tumor diagnosis. Cerebellum tumor, low grade, craniotomy (that anniversary is coming up too!). No recurrence so far. Happy and grateful to keep having anniversaries and for the #BTSM community! |
| Erica Robinson @eleighrobs @BTSMchat Yes. I feel guilty. When I am at a neuro appointment I sometimes hear other patients reactions, and my guess is that they didn't get good news. #BTSM |
| Liz Salmi @TheLizArmy @lisaoleary524 @eleighrobs @BTSMchat @NBTStweets @NewEnglandNBTS Neither of you sound like broken records! New people like to get some background of where folks are coming from. 😉 #BTSM |
 | Sean Sachdev, MD @SeanSachdevMD @BTSMchat Hi all, checking in from Chicago, looking forward to listen in for tonight's topic. #btsm |
| Liz Salmi @TheLizArmy @FandIncollingo Thanks for joining us, Beth! It's really cool to see @cure_magazine folks joining the tweet chats. I ran into a Cure blogger in a #BCSM chat a few months ago. #BTSM |
| Sarah Funes Ozturk @SarahFunes @BTSMchat AI hard ,lonely ,scary, and difficult. Back in 2002 there was no online community and no one I knew in my community had one. #btsm |
| Lisa O'Leary @lisaoleary524 T1: From the care partner perspective - Devastating. Tragic. Overwhelming. Life-altering. #btsm |
| Liz Salmi @TheLizArmy Brian here is tweeting from the hospital before a ventricularplasty this week... Is there a Twitter award for this? #BrainTumorProblems #BTSM |
| Charlie Blotner @CBlotner_ @BTSMchat T1 - It depends on context and audience I'm communicating with. Talking about #btsm or camps, I'd say fulfilling and meaningful./1 |
| Liz Salmi @TheLizArmy RT @MLCotcher: "I'm tweeting from the hospital" = BOSS #btsm |
 | Mariah Jae @MariahJaeee @BTSMchat T1: T1: I often find myself trying to soften the blow when telling people. I'll say I have "the best of the worst", or (because I'm watch and wait) I'll say "It's not bad yet! May never be bad!" #btsm |
| Liz Salmi @TheLizArmy @VictoriaBBurns @BTSMchat Thanks for joining us tonight! #btsm |
| Erica Robinson @eleighrobs @TheLizArmy He wins. #BTSM @brianatennant |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T1// epically life altering. I don’t know what else to say. Who I thought I was, who I am, who I want to be... all utterly changed. Not to sound foo foo-y, but it’s not actually... worse. My whole purpose, enjoyment of life for what it is— it has grown. Not shattered. #BTSM |
| Liz Salmi @TheLizArmy @sean_sachdev @BTSMchat Great to see you, Sean! Glad you are hanging out tonight. #BTSM |
| Charlie Blotner @CBlotner_ @BTSMchat T2 But, talking about flashbacks to awake surgery, I'd say destructive and damaging. This experience has been such a range of emotions, and not everyone is interested in hearing the whole story. /2 #btsm |
| Victoria @V_BBurns @BTSMchat T1 (as a patient): overwhelming, humbling, RESEARCH, advocate (be your own), MRIs, gadolinium, craniotomy, always learning, grateful, & meaningful. My perspective on many things has changed. Even my new career path/academic endeavor was influenced by my BT experience. #BTSM |
 | Jess G-B @JAGRacer1875 @brianatennant @BTSMchat #BTSM Jessica here. Diagnosed w/a meningioma in 2013; just had my 5 year post-surgery MRI & the results were stable. Adding you to my prayers Brian. |
| Erica Robinson @eleighrobs @BTSMchat T1/ Life altering. Terrifying. And now, Empowering #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat T1: Words used to express my brain tumor journey... 2008-2011: WTF???????! 2012-2014: I guess this is my new normal? *friends start having recurrences/dying* 2015: I am burnt out and sad. 2016-2018: Maybe I can find a way to change the world? #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T1// (2) which is not to say everything is amazing & I’m not terrified almost 24/7. I’m always scared. I’m afraid of regrowth. I’m afraid of new cancer. I’m afraid of blood clots (how my mom died/pancreatic cancer patient). I’m afraid my diet is wrong. I’m fatter now. Etc. #BTSM |
| Kendra K @KMJtravels @BTSMchat T1: surreal, even a year later #glioblastoma #btsm |
 | Carolyn Pointer @CarolynAPointer @BTSMchat #btsm t1: I describe it as an insane series of coincidences that led to me getting good care, but I worry that the system does not work for everyone. Dx oligodendroglioma 9 months ago. |
| Sarah Funes Ozturk @SarahFunes @eleighrobs @BTSMchat 👍🏻 #btsm |
 | #BTSM chat @BTSMchat Words used to describe the care partner perspective of #glioblastoma... #BTSM |
| Matt Cotcher @MLCotcher T1: Over the years, I've found it almost doesn't matter what words I say after "I have a brain tumor" - most folks assume the worst at that point. #btsm |
| Victoria @V_BBurns @SarahFunes @BTSMchat I completely agree about lonely. I was diagnosed at 18 in 2009 and there was no #BTSM. I read so many books and searched for blog posts because I craved information and a community. Grateful for this community. I wish I had it when I was diagnosed/recovering from craniotomy... |
 | Alicia C. Staley @stales hi everyone - just popping in to say hello #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch RT @TheLizArmy: @BTSMchat T1: @BTSMchat T1: Words used to express my brain tumor journey... 2008-2011: WTF???????! 2012-2014: I guess this is my new normal? *friends start having recurrences/dying* 2015: I am burnt out and sad. 2016-2018: Maybe I can find a way to change the world? #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch RT @eleighrobs: @BTSMchat T1/ Life altering. Terrifying. And now, Empowering #BTSM |
| Charlie Blotner @CBlotner_ @stales Always great to see and hear from you, Alicia! You're welcome to join in the conversation. #btsm |
| Lisa O'Leary @lisaoleary524 T2: I used to talk about Patrick's brain cancer as a journey and it always bugged me. I don't use that anymore. Also don't talk about "losing the fight" to GBM. Implies someone has some control, or didn't try hard enough. If wanting to live was the criteria, he'd be here. #btsm |
| Sarah Funes Ozturk @SarahFunes T2 A1 Back when I was diagnosed I felt like a victim. After I joined and learned about the Disability History Movement I felt (1 of 2) #btsm |
| Liz Salmi @TheLizArmy @CBlotner_ @BTSMchat Yes, it all depends on the context! When I am working with you, @lisaoleary524 @adamhayden @StevenLaFond, etc., I feel like "wow we can really do something here." Then I hear bad news from people and I remember, "Oh, this can happen to me." #BTSM |
| Sarah Funes Ozturk @SarahFunes Empowered and felt I had the tools to advocate for myself and others. This enabled me to have disability pride and do shit. (2 of 2) #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat T2 I initially described myself as a "brain tumor survivor" much more than now. Now I see myself as a brain tumor patient./1 #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @CBlotner_ @BTSMchat People often don’t believe me when I say— outside of social media & fellow cancer patients— I really don’t talk about it. That much. Unless they ask. Then I go to town. But because of my gabs on social media— many DO ask. I’m lucky. Or weird. I dunno. Both. #btsm |
| Mariah Jae @MariahJaeee @BTSMchat T2: When I first found the BT community many people said "we are all survivors!", but I feel like I haven't earned that title yet. I like to lead with my diagnosis when meeting perspective employers/dates so I'll "I'm Mariah and I have a brain tumor" so it's me first. #btsm |
| Liz Salmi @TheLizArmy RT @MLCotcher: T1: T1: Over the years, I've found it almost doesn't matter what words I say after "I have a brain tumor" - most folks assume the worst at that point. #btsm |
| Sarah Funes Ozturk @SarahFunes T2 A2 This manifested in language by using by using the social construct of disability that says person first instead of medical terms #btsm |
| Carolyn Pointer @CarolynAPointer #btsm T2: I’ve learned to say I’m okay but I had a brain tumor removed, trying to not cause panic when I share what’s new with me. |
| Charlie Blotner @CBlotner_ @BTSMchat T2 I think this shift stems from the now realization of managing a brain tumor and its side effects/symptoms as a chronic illness, and a personal abandonment of the fighting/warrior narrative. /2 #btsm |
| Erica Robinson @eleighrobs @lisaoleary524 T2/ I have changed my language when I speak about friends that have lost their LIFE, and not their battle. I learned that by hearing from you and many others say how they feel that way about using the word, "losing". #BTSM @BTSMchat |
| Sarah Funes Ozturk @SarahFunes @CarolynAPointer I feel that so strongly, eventually it will become your new normal. #btsm |
| #BTSM chat @BTSMchat Oh hey... @VictoriaBBurns, meet @stales of #bCsm (breast cancer social media). Alicia and #bCsm are the inspiration for #bTsm... Perhaps we can all give #bCsm a big thanks tonight. 👏👏👏 https://t.co/G2uPakwYEt |
| Erica Robinson @eleighrobs @ZHeatherChamp That's sweet of you. Thank you. We're all making a difference, and I am grateful for this forum. #BTSM |
 | teens get cancer too @trials4now RT @VABC: Interesting research emerging, we will be eager to see how this decelops. Doctors Are Using Herpes Virus to Fight Brain Cancer, and It's Working - https://t.co/b2a6AFk6xN #CURE #HOPE #VABC #BTSM #HFTC |
 | KateWhy @KattyBatty1 #BTSM |
| Alicia C. Staley @stales @BTSMchat @VictoriaBBurns awww, thank you!! #btsm xoxoxoxo |
| Liz Salmi @TheLizArmy @stales Hey Alicia! Great to see you here. #BTSM |
| Victoria @V_BBurns @BTSMchat T2: In the beginning, post craniotomy...I saw myself as a survivor. Now, 9 years later, I describe myself as a brain tumor patient & advocate. The patient part never really goes away as long as I’m still getting MRIs and going to the BT clinic. I’m an advocate now, too. #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T2// I’m more confident now. Which is weird? I have always had an obsessive personality— now I get to use it to be useful. My social media gabbing has a purpose. I never thought I was good enough or smart enough at anything. Now? I just DO. Life is too dang short. #BTSM |
| Liz Salmi @TheLizArmy @lisaoleary524 Oh man, I hate "losing the fight." That's the worst! #BTSM |
 | miranda riddle @PipRiddle @BTSMchat T1// the tumor (and later cancer) became a third party in our relationship. Our choice was simple. Treat it as a mistress? Or treat it as the roommate you can’t kick out until the lease is up? We chose the latter. Laughed to ourselves for sticking it out. #BTSM |
| Alicia C. Staley @stales @TheLizArmy hey! great topic tonight #btsm |
| miranda riddle @PipRiddle @BTSMchat T1// and in simple words- grueling, exhausting. Eye opening. Our life timeline became BT and AT- before tumor and after tumor. #BTSM |
| Kendra K @KMJtravels @BTSMchat From the kiddo: I wish you were fast again (aka re my right sided weakness”. From the hubby: facing the unknown. From the cousins: scary. #btsm #Glioblastoma |
| Sean Sachdev, MD @SeanSachdevMD @eleighrobs @lisaoleary524 @BTSMchat As a clinician I hope we do away with metaphor of a battle with cancers. https://t.co/1kkg174hhJ #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T2: Words used to describe myself: 2008-2011: Brain tumor warrior 2012-2014: Brain tumor patient 2015-2018: Curious #BTSM |
| Lisa O'Leary @lisaoleary524 @sean_sachdev @eleighrobs @BTSMchat Amen. Thank you, Sean, for ALL the important work you do - including this. #BTSM |
| Lisa O'Leary @lisaoleary524 RT @sean_sachdev: @eleighrobs @lisaoleary524 @BTSMchat As a clinician I hope we do away with metaphor of a battle with cancers. https://t.co/1kkg174hhJ #btsm |
| Victoria @V_BBurns @stales @BTSMchat Thank YOU! Seriously. I’m truly grateful for this community that you inspired with #BCSM. We are all empowering, venting, and learning with each other. 🙏🏻💪🏻 #BTSM |
| Beth Fand Incollingo @FandIncollingo This study found problems with military terminology used to discuss cancer: https://t.co/eSr8I0L7ze #BTSM |
| Liz Salmi @TheLizArmy RT @VictoriaBBurns: @BTSMchat T2: @BTSMchat T2: In the beginning, post craniotomy...I saw myself as a survivor. Now, 9 years later, I describe myself as a brain tumor patient & advocate. The patient part never really goes away as long as I’m still getting MRIs and going to the BT clinic. I’m an advocate now, too. #BTSM |
| Charlie Blotner @CBlotner_ @KMJtravels @BTSMchat So great. Thanks for the family poll, Kendra. #btsm |
| Liz Salmi @TheLizArmy @stales Credits go to @CBlotner_ for designing tonight's topic. #BTSM 🏆 |
| Sheriff Tennant @brianatennant @BTSMchat #btsm T2 my favorite part is that the people in this group get it. I can say I have a scan coming and people understand that or I can say I have an IDH1 mutation and everyone(at least most everyone) knows what that means. |
| Mariah Jae @MariahJaeee @BTSMchat T3: I feel incredibly guilty. I feel guilty for the worry I cause family & friends, I feel guilty whenever friends complain about something and I (internally) scoff at silly it is, I feel guilty in the BT community that I'm still on watch and wait and haven't had treatment #btsm |
| Lisa O'Leary @lisaoleary524 T3: The first advocacy event I attended after Patrick died, I met several multi-yr GBM survivors. I felt jealous, angry, and then guilty that I couldn't just be happy that things turned out better for them than my husband. #btsm |
| Victoria @V_BBurns @ZHeatherChamp I primarily advocate for @NBTStweets through my various social media outlets. I have fundraised before, donated, and I do live very close to DC so I have attended advocacy events and visited my Senator (although School stopped me the past 2 years). #BTSM |
| Sarah Funes Ozturk @SarahFunes @BTSMchat T3 A1 I feel hella guilt. Many of my friends hv died but I'm still here. I have friends that can't et off their seizure meds #btsm |
| Liz Salmi @TheLizArmy @lisaoleary524 @sean_sachdev @eleighrobs @BTSMchat I echo @lisaoleary524. Thank you. #BTSM |
 | Malnati Brain Tumor Institute at Northwestern @BrainTumorInst RT @sean_sachdev: @eleighrobs @lisaoleary524 @BTSMchat As a clinician I hope we do away with metaphor of a battle with cancers. https://t.co/1kkg174hhJ #btsm |
| Matt Cotcher @MLCotcher T3: I survived my tumor and recurrence. Dad died 9 months after his GBM diagnosis. Survivor guilt is real. #btsm |
| Charlie Blotner @CBlotner_ @TheLizArmy @stales When you need to talk ~feelings~, I'm your person 😎👋. Just came from running an in-person support group right before this! Different vibe and demographic than #btsm, and still just as great. Finding and building community is awesome. |
| Malnati Brain Tumor Institute at Northwestern @BrainTumorInst @BTSMchat Listening! Thanks for all you do. #BTSM |
| Victoria @V_BBurns @ZHeatherChamp Social media/old fashioned letter writing...great ways to be an advocate. Tell your story. Make calls. I’m getting a degree now in clinical social work but I hope to also work on policy/social change w/ my degree (as many SWs do). Fundraise too! #BTSM |
| Sarah Funes Ozturk @SarahFunes T3 A2 @BTSMchat it was difficult. It really screwed up my brother who felt he was neglected. My mom was terrified I would die (1 of 2) #btsm |
| Charlie Blotner @CBlotner_ @MLCotcher I didn't realize your dad had GBM. I'm sorry he died. Did the two of you enroll in Gliogene before his death by chance? #btsm |
| Sarah Funes Ozturk @SarahFunes T3A2 P2 @BTSMchat my mother was terrified once I survived that I would become addicted to pain meds as well. (2 of 2) #btsm |
| Sarah Funes Ozturk @SarahFunes @Nebraska_Taylor @BTSMchat 💯 #btsm |
| Charlie Blotner @CBlotner_ @lisaoleary524 These feelings are so raw and real. Thank you for sharing them. #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T3. I feel guilty I am living w/a brain tumor that is both MALIGNANT but also NOT MALIGNANT ENOUGH. My tumor is technically "cancer" so I have fear. But my tumor isn't as bad as higher grades, so I feel like I need to hide my fear because others might say "must be nice." #BTSM |
| Kendra K @KMJtravels @BTSMchat I do not feel guilty about my circumstances-I feel mad, surprised, sad, annoyed, scared, motivated. #Glioblastoma #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T3// Guilty? Yes. My mom saw/heard me scream when I got my diagnosis. A few months later she got her pancreatic cancer diagnosis. I watched her crumble before my eyes. Yeah, she was 77– but I feel like I killed her. I was born too early, & late in her life. Did I kill her? #btsm |
| Liz Salmi @TheLizArmy @BTSMchat Grade II astrocytoma is the #FirstWorldProblems of brain cancer. #BTSM |
| Sheriff Tennant @brianatennant @MariahJaeee @BTSMchat Ill echo this. The amount of times I’ve told my wife I’m sorry that we have to go through this is too immeasurable to count. #btsm T3 |
| Erica Robinson @eleighrobs @ZHeatherChamp @VictoriaBBurns @NBTStweets You don't have to travel. Calling your local Congressman is a great way to help. #BTSM If you live close by an @NBTStweets event, you could volunteer and meet others in the community. We can help you figure that out. #BTSM |
| Charlie Blotner @CBlotner_ @BTSMchat T3 I think my guilt is associated with not being sick "enough" if/when that is the only context some people know me in. /1 #btsm |
| Sarah Funes Ozturk @SarahFunes T3 A3 @TheLizArmy @BTSMchat I certainly do not agree. I am physically considered more severely injured (1 of 2) #btsm |
| Sarah Funes Ozturk @SarahFunes T3 A3 than many who had the same kind of tumor. You included Liz. (2 of 2) #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat Doing and feeling great can seem at odds with the messages others send if they expect someone who has had a brain tumor to look and need help with particular activities. /2 #btsm |
| Liz Salmi @TheLizArmy @Lifeiskitsch @BTSMchat You DID NOT kill your mom. Full stop. Her cancer was growing, unseen, just like yours. #BTSM |
| Victoria @V_BBurns @BTSMchat T3: I feel guilty every time I go to the Brain Tumor clinic and receive good news about my MRI being stable & know that some patients in the waiting room won’t receive the same. Guilt isn’t always associated with the patient experience, but it can be a significant part... #BTSM |
| Lisa O'Leary @lisaoleary524 @TheLizArmy @BTSMchat I can understand this. I have sometimes had difficulty understanding just how scary and awful a lower grade tumor can be - and still so life altering - since my experience was watching GBM (and one of the worst cases, sx wise, I have heard of.) #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T3// I feel guilty because “I look too healthy” to be sick. AA3. I mean, I’m healthy... but I have a technically “terminal” diagnosis (&, yes, all of life is terminal). 2-4 years survival? 4-6? 6-8? 10+? HOW LONG DO I HAVE, DOC? Is my constant unanswerable question. 🤯🧠💃 #btsm |
| Lisa O'Leary @lisaoleary524 @ZHeatherChamp @eleighrobs Your Congressman is Salud Carbajal and he is very familiar with @NBTStweets. I met with him earlier this year. #BTSM |
| Sarah Funes Ozturk @SarahFunes @CBlotner_ @BTSMchat that's unfortunate. #btsm |
| Charlie Blotner @CBlotner_ @danaswanswan @BTSMchat Dana! Long time no #btsm see! I remember finding your YouTube videos and thinking "someone else like me." I like that mindset. |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @BTSMchat I know. I *know* that. But I feel like I busted her from birth onward. I feel like our cancers both started when I was conceived. I’m so weird. #btsm |
| Erica Robinson @eleighrobs @lisaoleary524 @ZHeatherChamp @NBTStweets There you go! #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat T3. Over the last two years I've stopped saying I have "brain cancer," & started saying "I have a malignant brain tumor." Why? Because I feel like people w/more aggressive tumors are more deserving of the Cancer badge. I am too healthy and not deserving of concern. #BTSM |
| Charlie Blotner @CBlotner_ @MLCotcher Gottcha gottcha. @TheLizArmy and her dad signed up for Gliogene - I believe it's out of Baylor and she could tell you more than I could. A quick read on it: https://t.co/m8eNMBmbWO #btsm |
| Sean Sachdev, MD @SeanSachdevMD @VictoriaBBurns @BTSMchat Thank you for sharing Victoria. #btsm |
 | Dana Swanson (they/she) @danaswanswan @CBlotner_ @BTSMchat I always forget about the Sunday night hangs! I love this community! Thank you for making me a part of it! #btsm |
| Victoria @V_BBurns @ZHeatherChamp @eleighrobs @NBTStweets A good link with lots of info on how to be a brain tumor advocate! https://t.co/ofjQAiEHLL @NBTStweets #BTSM |
| Sarah Funes Ozturk @SarahFunes @BTSMchat T4 A1 to be in your feelings. Know that they are valid & to reach out if you need support. You aren't alone. It's too common #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @vickyyyf @TheLizArmy @BTSMchat She had been sick & unwell & undiagnosed (partly she just didn’t want to call her primary care, she hated going— she needed surgery literally FOR YEARS). #btsm |
| Liz Salmi @TheLizArmy @Lifeiskitsch @BTSMchat Regarding all of the "guilty" feelings from the patients in this chat... Many/most of us are "healthy enough" to BE ON TWITTER, while the vast majority of ppl w/brain tumors can't do what we are doing right now. I think that adds to the guilt. #BTSM |
| Lisa O'Leary @lisaoleary524 T4: again, care partner perspective- don't feel guilty WHEN (not if) you become overwhelmed. In the beginning I didn't give myself permission to feel that way because it was my husband with the tumor. Later someone reminded me that I was living it, too, albeit differently. #btsm |
| Liz Salmi @TheLizArmy @danaswanswan @CBlotner_ @BTSMchat Girl, get it on your calendar! Seriously... I added #BTSM to my iCal and Google Calendars. And Outlook. 🤣 |
| Sheriff Tennant @brianatennant @BTSMchat T4 everything works out the way it’s supposed to. But don’t take it for granted #btsm |
| Sarah Funes Ozturk @SarahFunes @TheLizArmy @danaswanswan @CBlotner_ @BTSMchat Wish there were a way you could send us event invites #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @BTSMchat T3// (2) People always try to “me too” the heck out of my word scrambles & forgetfulness. IT IS NOT THE SAME. Like, my short-term memory is in the toilet. But I feel guilty because I wonder if I’m being truly honest. Do I even know my deficits? #btsm |
| Lisa O'Leary @lisaoleary524 @TheLizArmy @danaswanswan @CBlotner_ @BTSMchat Me too. I'd never remember if I didn't get alerts every month. #BTSM |
| Liz Salmi @TheLizArmy Every time my doctor is running late I think, "She must be giving someone else bad news right now." When I see her, I know she has had so many hard conversations before seeing me. And I wonder if I am the only "good news" she gets that day. #BTSM #hpm |
| Kendra K @KMJtravels @lisaoleary524 I do feel guilty about the extra burden on my hubby with kiddo care and not being able to drive currently #btsm |
| Victoria @V_BBurns @lisaoleary524 @ZHeatherChamp @eleighrobs @NBTStweets Thanks Lisa! Teamwork. Hope the info from others and @NBTStweets link I provided help! Advocacy sounds daunting, but you can be an advocate with a call to your representative or the click of a mouse! Every bit of advocacy helps. #BTSM |
| Lisa O'Leary @lisaoleary524 @KMJtravels There is definitely guilt on both sides - I am sure they feel like I did, which is just so guilty that you have to experience the physical/emotional impact of the tumor. #BTSM |
| Charlie Blotner @CBlotner_ @BTSMchat T4 Talk to other community members - they're likely weighing those same decisions with their own friends and family. #btsm |
| Mariah Jae @MariahJaeee @BTSMchat T4: guilt without action festers. If you are feeling guilt (even undeservedly so) for putting burden on friends, family and coworkers make sure to make a point to show appreciation when you can in unique and nonverbal ways. #btsm |
| Matt Cotcher @MLCotcher T4: 1st advice is to help validate their guilt. No matter what it is (as this chat shows), patient-based guilt needs to be voiced. 2nd piece of advice is to help folks understand that there is always someone undergoing worse circumstances. Always. #btsm |
| Sarah Funes Ozturk @SarahFunes @TheLizArmy Me too. Especially since I've been clear so long. #btsm |
| Erica Robinson @eleighrobs @TheLizArmy @Lifeiskitsch @BTSMchat Yes, thank you for saying that! #BTSM |
| Lisa O'Leary @lisaoleary524 @BTSMchat @ancan501c3 @adamhayden Thanks for plugging this! It'll be our second meeting, and I know our participants got a lot out of it last month- I know I did! #BTSM |
| Victoria @V_BBurns @TheLizArmy I wonder this as well. I never worry about “my time” at Brain Tumor appointments...I worry about the people ahead of me and the people sitting next to me in the waiting room. I never feel more grateful than when I leave the clinic & have that perspective. Guilty/Grateful. #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat T4. Advice for people feeling guilty: It is OK to feel bad/scared about your situation. As my first neurologist told me, "First, save your life. Then worry about everything else." He said this when I was in tears, devastated that I was pulling out of college. #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch RT @TheLizArmy: @BTSMchat T4. Advice for people feeling guilty: @BTSMchat T4. Advice for people feeling guilty: It is OK to feel bad/scared about your situation. As my first neurologist told me, "First, save your life. Then worry about everything else." He said this when I was in tears, devastated that I was pulling out of college. #BTSM |
| Liz Salmi @TheLizArmy @VictoriaBBurns I think we might be the same person. 🤔 #BTSM |
| Sarah Funes Ozturk @SarahFunes @TheLizArmy @BTSMchat This is so true but you still made #btsm and I for one am forever grateful. |
| Lisa O'Leary @lisaoleary524 Thanks everyone- a great talk as always. Thanks @CBlotner_ @TheLizArmy - and if you missed @adamhayden, jump on our @ancan501c3 call Thursday! #btsm |
| Victoria @V_BBurns @danaswanswan @BTSMchat That’s a long wait! The mind certainly wanders a lot when time goes on at these appointments...not good places usually. I find it hard to be distracted once I’m there. #BTSM |
| Sarah Funes Ozturk @SarahFunes @BTSMchat @TheLizArmy @adamhayden @CBlotner_ ttfn ya'll #btsm |
| Liz Salmi @TheLizArmy @danaswanswan @BTSMchat @ancan501c3 @adamhayden @lisaoleary524 It's definitely where the cool kids are at! *hoping I'm cool* #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T4// We all have a very finite time here. Sometimes talking to someone who is having a rough time helps me feel purposeful & brave. It’s a salve for everything. #btsm |
| Victoria @V_BBurns @TheLizArmy I think so 🤔 #BTSM |
| Liz Salmi @TheLizArmy @SarahFunes @BTSMchat Me + @CBlotner_, inspired by @stales and #BCSM. #BTSM 😀 |
| Liz Salmi @TheLizArmy @BTSMchat @adamhayden @CBlotner_ Great chat tonight! Thanks to everyone who joined in! #BTSM |
| Erica Robinson @eleighrobs @VictoriaBBurns @TheLizArmy Exactly. When I walk out of my surgeons' office, I walk by the bathroom that I struggled to get myself together when I was facing a brain tumor diagnosis. I think "someone else is likely going to do the same thing today", and I feel guilty. #BTSM |
| Victoria @V_BBurns @TraceyGamerFan @BTSMchat That’s a whole other level of guilt. The guilt we feel for our loved ones. Even years later, after many stable MRIs I feel guilty for the anxiety my mom and family feels during appointments. Even briefly. #BTSM (sorry I saw this late) |
| Erica Robinson @eleighrobs @BTSMchat @TheLizArmy @adamhayden @CBlotner_ Thank you! #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @SarahFunes @BTSMchat Yes, I am a lucky unlucky. Deep left temporal lobe, creeping into hippocampus. Some of my tumor was inoperable, but most of it was removed. My short-term memory & speech/word skills took a tumble, though. #btsm |
| Erica Robinson @eleighrobs @VictoriaBBurns @TheLizArmy Thank you for perfectly articulating my thoughts on that. #BTSM |
#BTSM content from Twitter.