#BTSM Transcript
Healthcare social media transcript of the #BTSM hashtag.
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See #BTSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Hedy Wald @hedy_wald @adamhayden: Thanks for joining us #btsm |
 | Dr. rer. pol.Sabine Schwab @Sabine_NJ I'll be participating in said chat over the next 60 minutes. #btsm |
 | Lisa O'Leary @lisaoleary524 Hi all, I'm Lisa from California. I was a caregiver for my husband Patrick who passed from GBM on 7/11/15. #btsm |
 | Liz Salmi @TheLizArmy @Sabine_NJ Hey DOCTOR Sabine! Congrats, and welcome! #btsm |
| Liz Salmi @TheLizArmy @lisaoleary524 Yay, Lisa is in the house! First ever #btsm tweet chatter. |
 | Brian Alexander @xelamb Brian Alexander #radonc joining from Boston. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ Hi, I'm Sabine, a 3.5 years survivor of AA3. I'm from Germany, live in NJ since 2010, and am a bt advocate and ABTA volunteer. #btsm |
 | Charlie Blotner @CBlotner_ @BTSMchat Hi all. Tomorrow will be 5 years since my awake cranio for a grade II Astrocytoma. I'm an MSW student now based in Seattle. #btsm |
| Hedy Wald @hedy_wald My story’s key wrds:mom/grndmom/prof/clinl psychlgst/resilince coach/writr/cyclist/aerobcs lover/cancer caregivr;latter not by choice #btsm |
| Liz Salmi @TheLizArmy @BTSMchat Liz here. Grade 2 astrocytoma. Finished with treatment as of 2011. Blogger at https://t.co/RJpV8wi1lB. #btsm |
 | Rick Franzo @braintumortalk I am here, finally!! #btsm #benignisnotfine |
| Hedy Wald @hedy_wald So good to know y'all You inspire, you fire me up #braincancer #btsm |
| Liz Salmi @TheLizArmy @xelamb Brian! Great to see you. We love #radonc community. ;) #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @braintumortalk Hi Rick! Happy to see you here! #btsm |
| Hedy Wald @hedy_wald @lisaoleary524 sorry 2hear this, my heart is with you #btsm |
| Charlie Blotner @CBlotner_ @braintumortalk Rick! I've been hoping you'd join us for years! Glad we've finally converted you to join us on the dark side. #btsm |
 | Zach Weiner @zdubs Proud of @hedy_wald for leading an important discussion and being the strongest and most caring person I know #BTSM https://t.co/B98Cem6QF8 |
| Hedy Wald @hedy_wald @CBlotner_ @braintumortalk Which dark side? Is that the eclipse? It doesn't last #btsm |
| Liz Salmi @TheLizArmy @braintumortalk Rick! You are finally here. Better late than never! #btsm |
| Charlie Blotner @CBlotner_ @hedy_wald @braintumortalk Hah! This dark side has cookies. Probably baked by @stales. #btsm |
| Hedy Wald @hedy_wald @zdubs @hedy_wald Wow I got all choked up already with that one ;-) #braincancer #lovewillfindaway #btsm |
| Rick Franzo @braintumortalk I'm Rick, 3x non malignant by survivor 2 meningioma & an acoustic neuroma #btsm #benignisnotfine |
| Charlie Blotner @CBlotner_ @lisaoleary524 Is this your first time with us, Lisa? Welcome! #btsm |
| Hedy Wald @hedy_wald @BTSMchat @hedy_wald So honored 2join U @share&2care&2learn together, a gift #btsm |
| Lisa O'Leary @lisaoleary524 @CBlotner_ @lisaoleary524 Yes, my first! I've thought about it for a while so I'm happy to join! #btsm |
| Rick Franzo @braintumortalk @TheLizArmy happy to be here, been awhile! #btsm |
| Liz Salmi @TheLizArmy Thanks for joining us @hedy_wald! I appreciate you sharing your experience with all of us. #btsm |
| Liz Salmi @TheLizArmy @CBlotner_: I met @lisaoleary524 @NBTStweets' Heads to the Hill! #btsm |
| Hedy Wald @hedy_wald It's been 5years caring4a husband w/GBM real&surreal, I think I still don't believe it #btsm |
| Charlie Blotner @CBlotner_ @lisaoleary524 We're so glad that you took a leap and decided to partake this evening. @TheLizArmy can be very convincing! #btsm |
 | Heather 🇺🇸 @ZHeatherChamp I'm Heather; living w 2 Gangliocytoma since 2011. I love to research genealogy and I blog about Rare Disease life. #btsm #pten #rdsm |
| Hedy Wald @hedy_wald @TheLizArmy @hedy_wald I would write "my pleasure" but this is tough stuff we know but so honored by all of U #btsm |
| Rick Franzo @braintumortalk @TheLizArmy I'll post a link on here at the end of the chat #btsm |
| Liz Salmi @TheLizArmy @ZHeatherChamp Great to see you Heather. Let me know how #RDSM is coming along! #btsm |
| Hedy Wald @hedy_wald T1Coping4me thru #writing: https://t.co/wiif4A7zlH & https://t.co/EiET6p1r3e #btsm |
| Brian Alexander @xelamb @TheLizArmy Thanks Liz! And thanks for telling me about me the #btsm community in DC! |
| Rick Franzo @braintumortalk @Sabine_NJ #btsm |
| Hedy Wald @hedy_wald T1 Humanities eg: #art #writing 2help:”We write into our wounds” Adrienne Rich #btsm |
 | Rick Boulay,MD @journeycancer RT @TheLizArmy: Heads up Twitter friends: Heads up Twitter friends: Expect increased tweet activity from me over next hour as I participate in the #BTSM tweet chat. https://t.co/L260QnMAjb |
| Lisa O'Leary @lisaoleary524 T1 Truthfully I didn't have a lot of time to develop coping skills at the time. It was very chaotic- 10 months from 1st seizure to dx #btsm |
| Lisa O'Leary @lisaoleary524 Seizure to passing, sorry #btsm |
| Hedy Wald @hedy_wald @lisaoleary524 Yes we need2remember different skills4different points in time, traumatic in beginning #btsm |
| Charlie Blotner @CBlotner_ @LisaJaayyy Appreciate you popping on to let us know - see you next month! #btsm |
| Hedy Wald @hedy_wald T1We bring our stories2inform our work: https://t.co/WxdMsjRtoQ #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ T1: Coping through helping others, writing, living life every day! #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T1: My husband did/does an amazing job as a caregiver. His existence helps me be a stronger patient. If that makes any sense #btsm |
| Rick Franzo @braintumortalk @BTSMchat @hedy_wald Hi Hedy! Nice to meet you here!! #btsm |
| Heather 🇺🇸 @ZHeatherChamp @LisaJaayyy Have a good one! <3 #btsm |
| Lisa O'Leary @lisaoleary524 T1: The one change I would make would have been taking time for myself and allowing people to help more. 1/ #btsm |
| Hedy Wald @hedy_wald T1As caregiver, how cope w/feeling as if ur living in a parallel universe? How cope w/isolation feeling? #btsm |
| Heather 🇺🇸 @ZHeatherChamp Excuse me: Who's posting the topics again? #btsm |
| Lisa O'Leary @lisaoleary524 T1: I tried to control everything to change the outcome. Since he died I was dx with PTSD and it's been a rough road to recover. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @TheLizArmy Same is true for me/ my husband. I always tell him he is my rock! #btsm |
| Hedy Wald @hedy_wald @lisaoleary524 I do hear this, ppl do want2help, no shame in saying YES #btsm |
 | Hold Your Head Up 💎 @HYHUTriangle @BTSMchat T1: As a patient and having been a caregiver, patience is key. You don't have to be perfect. #BTSM |
 | Jeff Cee @jeff_ccc @BTSMchat Patient here w/ Gr 4 glioblastoma. 2017 May 1 surgery. Just finished Cycle 1 of Temodar 250mg. Vancouver, Canada. #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat T1: Oddly, I was a caregiver for about 1 week after husband had MINOR stroke. I guess I did I good job, had good role model #btsm |
| Liz Salmi @TheLizArmy RT @Sabine_NJ: @TheLizArmy Same is true for me/ my husband. I always tell him he is my rock! #btsm |
| Hedy Wald @hedy_wald @HYHUTriangle @BTSMchat That's really profound, TY #btsm |
| Liz Salmi @TheLizArmy @Sabine_NJ What would we do without our amazing rocks? Rocks rock! #btsm |
| Rick Franzo @braintumortalk @BTSMchat as a patient, advocating for others helps me as well #btsm |
| Heather 🇺🇸 @ZHeatherChamp A1: I think I lament too much I am doing "this" alone. It's just me, myself and I. I write a lot. #btsm |
| Liz Salmi @TheLizArmy RT @hedy_wald: @lisaoleary524 I do hear this, ppl do want2help, no shame in saying YES #btsm |
| Hold Your Head Up 💎 @HYHUTriangle RT @hedy_wald: @HYHUTriangle @BTSMchat That's really profound, TY #btsm |
| Hedy Wald @hedy_wald T1Try2not let inner pain rule the day, push 4ward w/creative projects, future plans, don’t read abt #cancer 24/7 #btsm |
| Jeff Cee @jeff_ccc @BTSMchat T1: i cope by running! Ran 2 half marathons since surgery. #BeatYesterday #BTSM |
| Hedy Wald @hedy_wald T1Cope by being even kinder in the world. I love filling out praise forms at hotels &4airlines #btsm |
| Liz Salmi @TheLizArmy Listen up #caregivers! MT @hedy_wald No shame in saying YES to help #btsm |
| Lisa O'Leary @lisaoleary524 @hedy_wald Absolutely - reading the statistics is NOT helpful. Being informed was, but dwelling on the numbers is terrifying #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @TheLizArmy They do indeed! (ask Rick about Michael, it's always fun when he joins our support group meetings) ;-) @braintumortalk #btsm |
| Charlie Blotner @CBlotner_ T1. Caregiver logistical support has been a big relief in terms of stress reduction and things to worry about while recovering. #btsm |
| Hold Your Head Up 💎 @HYHUTriangle RT @HYHUTriangle: @BTSMchat T1: @BTSMchat T1: As a patient and having been a caregiver, patience is key. You don't have to be perfect. #BTSM |
| Heather 🇺🇸 @ZHeatherChamp @jeff_ccc That's amazing. I have a (kinda) bucket list thing to run a -half at Disneyland one day. :) #btsm |
| Hedy Wald @hedy_wald @lisaoleary524 @hedy_wald SO TRUE that word TERROR says it all. I thought a funeral <1yr, he's alive 5 #btsm |
| Rick Franzo @braintumortalk @BTSMchat T1 my wife and kids and mom are my rock. I'm pretty lost without them #btsm |
| Heather 🇺🇸 @ZHeatherChamp @hedy_wald That's a good point, too. I also try to make the extra effort to be kind to ppl in service industry. #btsm |
 | Erica Robinson @eleighrobs @BTSMchat #btsm Here, and listening. |
 | Melanie Kabo @MelanieKabo Sorry I'm late, thanks for the reminder @Cblotner_ #btsm |
| Liz Salmi @TheLizArmy @hedy_wald @lisaoleary524 I can't wait 'till @adamhayden jumps back into the convo in a few minutes. He's living with GBM. #btsm |
| Hedy Wald @hedy_wald @ZHeatherChamp @hedy_wald That's beautiful they love it & appreciate it #btsm |
| Lisa O'Leary @lisaoleary524 My husband had a very, very hard time - lots of behavioral problems, violence, sx like dementia - I was afraid to tell anyone #btsm |
 | Dale Logan @seedmatrix #btsm |
| Hedy Wald @hedy_wald T1Cope w/ indulging in the arts whenever possible, finding live #music & art museum when I travel2present #btsm |
| Charlie Blotner @CBlotner_ @hedy_wald Yes! The importance of taking a healthy step back when things can become all consuming. #btsm |
 | ScottyBueno @heypunko #btsm |
| Heather 🇺🇸 @ZHeatherChamp @HeatherVcu Hey friend. Are you up this late? #btsm tweetchat going on now. |
| Liz Salmi @TheLizArmy @ZHeatherChamp Yes! Express kindness with everyone who cares for us. #btsm |
| Lisa O'Leary @lisaoleary524 I was fearful that Patrick would be taken away from me if I told the truth about what was happening so I was isolated and felt alone #btsm |
| Liz Salmi @TheLizArmy @heypunko Oh, Scott's lurking! Thanks for letting us know you are here. :D #btsm |
| Heather 🇺🇸 @ZHeatherChamp @keelycreative Hey there. How are you? There's a #btsm tweetchat going on. Are you around? #gangliocytoma #btsm |
| Hedy Wald @hedy_wald @TheLizArmy @ZHeatherChamp &even when folks not stepping up2the plate cuz they can't4some reason, this stuff is scary #btsm |
| Hedy Wald @hedy_wald T1 War, battle metaphors don’t wrk4me w/incurable #cancer #btsm |
| Melanie Kabo @MelanieKabo T1- My kids keep me on my toes, which helps me cope. But mostly having such a wonderful husband is what gets me through. #btsm |
| Heather 🇺🇸 @ZHeatherChamp @hedy_wald It still irks me to this day, when people told me, "Oh Heather. You're so strong." WHUT?! #btsm |
| Lisa O'Leary @lisaoleary524 Helpful to let go of judgment of how others step up - or don't - because that just bred anger and resentment and left me less present #btsm |
| Rick Franzo @braintumortalk @Sabine_NJ @TheLizArmy True. Michael is great! He's a solid guy, much respect to him, and he's a lot of fun!! #btsm |
 | LizM @elm925 Wife of 2 year and counting GBM survivor listening #btsm |
| Liz Salmi @TheLizArmy @hedy_wald How do you and your husband balance/make travel work with him living with #glioblastoma? #btsm |
| Charlie Blotner @CBlotner_ @lisaoleary524 I think this fear is very common in dementia and elder care as well, unfortunately. Appreciate your honesty in sharing. #btsm |
| Heather 🇺🇸 @ZHeatherChamp @lisaoleary524 Very well said. I am (still) struggling w resentment towards my friends & how they acted during my recovery. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @MelanieKabo @thelizarmy another rock star husband. We should connect them ;-) #btsm |
 | Lisa Fields @lisafieldsms RT @TheLizArmy: @BTSMchat T1: @BTSMchat T1: My husband did/does an amazing job as a caregiver. His existence helps me be a stronger patient. If that makes any sense #btsm |
| Melanie Kabo @MelanieKabo RT @Sabine_NJ: @MelanieKabo @thelizarmy another rock star husband. We should connect them ;-) #btsm |
| Lisa Fields @lisafieldsms RT @lisaoleary524: T1: T1: The one change I would make would have been taking time for myself and allowing people to help more. 1/ #btsm |
| Liz Salmi @TheLizArmy @elm925 Thanks for lurking! Jump in anytime. Your perspective/questions/tips are valued here. #btsm |
| Heather 🇺🇸 @ZHeatherChamp A2: Caregivers need to know they don't have to do it alone. My mom didn't reach out, didn't ask for help. #btsm |
| Melanie Kabo @MelanieKabo @Sabine_NJ @MelanieKabo @TheLizArmy It would be great for them to know they're not alone. #btsm |
| Hold Your Head Up 💎 @HYHUTriangle T1: I not the same person you were before brain surgery. Thankful for the support of family, who understand the struggles. #BTSM |
| Hedy Wald @hedy_wald @ZHeatherChamp a powerful statement thanks #btsm |
| Heather 🇺🇸 @ZHeatherChamp A2a: And conversely, I think she really resented me during the process. Not on purpose, of course. Just human. #btsm |
| Lisa O'Leary @lisaoleary524 A2: individual counseling was paramount for me - didn't start til 2 weeks before Patrick passed, but continued for 2 years #btsm |
| Hedy Wald @hedy_wald T1 #braincancer impacts sons/daughters Heartheirstory https://t.co/rREXYDzaf1 #btsm |
 | DavisLiuMD 劉徳偉🇨🇦 🇹🇼 🇺🇸 @davisliumd RT @TheLizArmy: @BTSMchat T1: @BTSMchat T1: My husband did/does an amazing job as a caregiver. His existence helps me be a stronger patient. If that makes any sense #btsm |
| Hold Your Head Up 💎 @HYHUTriangle T1: I'm not the same person you were before brain surgery. Thankful for the support of family, who understand the struggles. #BTSM |
| Hedy Wald @hedy_wald @lisaoleary524 We need2do what we have to do #courage #btsm |
| Liz Salmi @TheLizArmy @vickyyyf Welcome home! We need a full debrief on your @TEDTalks! #btsm |
| Charlie Blotner @CBlotner_ Providing care along and in silence out of fear vs asking for potential help. A nearly impossible predicament. #btsm https://t.co/qEoiKUu5c5 |
| Hedy Wald @hedy_wald T1When U come out of storm U won't be same person that walked in - Murakami. family #cancer #caregiver 2 Lasting effects #meded #btsm |
| Lisa Fields @lisafieldsms RT @hedy_wald: T1Cope by being even kinder in the world. I love filling out praise forms at hotels &4airlines #btsm |
| Heather 🇺🇸 @ZHeatherChamp Hello! Heather here, jumping back & forth from #btsm chat too. Will jump in! Living w 2 brain tumors and Rare Disease. #pten #hcsm |
| Lisa O'Leary @lisaoleary524 @ZHeatherChamp I had resentment and felt SO much guilt about it. I resented the disease but it sure looked&sounded like him. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ T2: Time off! ;-) #btsm |
| Hedy Wald @hedy_wald T2 David Oliver @BMJ Don’t take carers for granted https://t.co/tEVgfS7cKv #btsm |
| Melanie Kabo @MelanieKabo T2- Finding a support group for both the caregiver and patient. Luckily in San Diego We have a great one that both of us attend. #btsm |
| Hold Your Head Up 💎 @HYHUTriangle T1: I'm not the same person was before brain surgery. Thankful for the support of family & people who understand the struggles. #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat Cool resource: @UCSFCancer has implemented a special program for caregivers of people with brain tumors. #btsm |
| Hedy Wald @hedy_wald T2 See family #cancer caregivers as co-producers as knowledge alongside patients #btsm |
| Charlie Blotner @CBlotner_ @vickyyyf Such dedication! #btsm |
| Liz Salmi @TheLizArmy @MelanieKabo @Sabine_NJ I wish my husband/caregiver was more open to connecting with other caregivers. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @MelanieKabo We have one that we both attend as well - if hubby's work schedule allows. #btsm |
| Hedy Wald @hedy_wald @TheLizArmy @BTSMchat @UCSFCancer Tx on that I need to check this out #btsm |
| Lisa O'Leary @lisaoleary524 @TheLizArmy @BTSMchat @UCSFCancer That's WONDERFUL! I spent so much time at UCSF, Patrick was inpatient 5 mos. Wish they had that then #btsm |
| Charlie Blotner @CBlotner_ @TheLizArmy Can you tell us more about the @UCSFCancer caregivers program? #btsm |
| Hold Your Head Up 💎 @HYHUTriangle Struggle like writing this tweet. Left brain #BTSM @BTSMchat |
| Liz Salmi @TheLizArmy RT @hedy_wald: T1When U come out of storm U won't be same person that walked in - Murakami. family #cancer #caregiver 2 Lasting effects #meded #btsm |
| Hedy Wald @hedy_wald @lisaoleary524 @ZHeatherChamp Me2 not enough written abt this, the anger/resentment, watching life pass us by, it hurts #btsm |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @TheLizArmy @MelanieKabo @Sabine_NJ I just finished research on this. "Support" is a peculiar thing; some feel more isolated in groups.They'd rather keep the COC intimate #btsm |
| Hedy Wald @hedy_wald T2Unique features of #cancer caregiving exp vs4other chronic conds. https://t.co/bvLwwERcbU Do Not Homogenize #btsm |
| Liz Salmi @TheLizArmy Powerful. MT @lisaoleary524 I resented the disease but it sure looked&sounded like him. #btsm |
| Lisa O'Leary @lisaoleary524 I connected with other caregivers/spouses through ABTA online forums - met some other wives with husbands struggling - helpful #btsm |
| Rick Franzo @braintumortalk @BTSMchat ABTA &NBTS are great organizations for solid information and guidance. #btsm #benignisnotfine |
| Hedy Wald @hedy_wald @TheLizArmy @MelanieKabo @Sabine_NJ not everyone is into a "support grp" doesn't work 4me #btsm |
| Charlie Blotner @CBlotner_ T2: I would recommend a support group for caregivers to connect with others who "get it," but as we know (and why #btsm first started!) /1 |
| Lisa Fields @lisafieldsms RT @hedy_wald: T1 War, battle metaphors don’t wrk4me w/incurable #cancer #btsm |
| Liz Salmi @TheLizArmy @lisaoleary524 Yes, it is a new program. I went to @UCSFCancer for first time in May and a social worker spent time w/my husband. #btsm |
| Melanie Kabo @MelanieKabo RT @CBlotner_: T2: T2: I would recommend a support group for caregivers to connect with others who "get it," but as we know (and why #btsm first started!) /1 |
| Lisa O'Leary @lisaoleary524 I think groups specific to brain cancer/tumors helpful - general cancer groups not bc brain cancer SO different #btsm |
| Charlie Blotner @CBlotner_ those can be few and far between. Not everyone feels comfortable using Twitter as a resource or using social media to share, either./2 #btsm |
| Lisa Fields @lisafieldsms RT @lisaoleary524: T1 Truthfully I didn't have a lot of time to develop coping skills at the time. It was very chaotic- 10 months from 1st seizure to dx #btsm |
| Liz Salmi @TheLizArmy @HYHUTriangle No problem! We understand. Take all the time you need with writing. :) #btsm |
| Hedy Wald @hedy_wald T2Need integrative #medicine available 4caregivrs, finl counseling job retrain? Hear abt integrativ med4cancer pts what abt caregivr #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @hedy_wald Have you tried online support groups? I did not like the first in person group either that I attended. #btsm |
| Liz Salmi @TheLizArmy RT @hedy_wald: @lisaoleary524 @ZHeatherChamp Me2 not enough written abt this, the anger/resentment, watching life pass us by, it hurts #btsm |
| Liz Salmi @TheLizArmy RT @lisaoleary524: I connected with other caregivers/spouses through ABTA online forums - met some other wives with husbands struggling - helpful #btsm |
| Hedy Wald @hedy_wald @Sabine_NJ @hedy_wald interesting...in beginning trauma, didn't want2hear word cancer, in a diff place now #btsm |
| Lisa O'Leary @lisaoleary524 Even groups for brain tumors can be hard - I compared my situation a lot and became bitter at times that Patrick's sx were "worse" #btsm |
| Liz Salmi @TheLizArmy Twitter is my support group. RT @hedy_wald not everyone is into a "support grp" doesn't work 4me #btsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @hedy_wald @TheLizArmy @MelanieKabo @Sabine_NJ Also, the need/desire for group support may be affected by SDOH and BDOH. You're right; not for everybody #btsm |
| Melanie Kabo @MelanieKabo @lisaoleary524 We have the San Diego Brain Tumor Foundation here, which is wonderful in having 2 support groups each month. #btsm |
| Hedy Wald @hedy_wald T2need2care for selvesKentetal’16 #Cancer journal: cancer caregivrs cancer-specific stress-impact on own physl health&immune func #btsm |
| Hold Your Head Up 💎 @HYHUTriangle Hard to ASK, for a person who is wired not to ask for anything. #btsm https://t.co/7290XKKcBf |
| Lisa O'Leary @lisaoleary524 @MelanieKabo @lisaoleary524 That's awesome. I went to law school in SD. Great resources - and visiting ocean most therapeutic of all! #btsm |
| Liz Salmi @TheLizArmy @lisaoleary524 I feel weird attending in-person support group because I'm doing so well. Afraid ppl will say "Why are you even here?" #btsm |
| Lisa O'Leary @lisaoleary524 @TheLizArmy @lisaoleary524 Totally makes sense. I think this is a wonderful forum. I already feel less alone and more understood #btsm |
| Heather 🇺🇸 @ZHeatherChamp @lisaoleary524 @BTSMchat That would be amazing; yet those w rare tumors wouldn't benefit. I do see your point tho. #btsm |
| Charlie Blotner @CBlotner_ Sit with this sentence for a moment. MT @lisaoleary524 I resented the disease but it sure looked & sounded like him. #btsm |
| Liz Salmi @TheLizArmy RT @CBlotner_: Sit with this sentence for a moment. MT @lisaoleary524 I resented the disease but it sure looked & sounded like him. #btsm |
| Hedy Wald @hedy_wald T2Need support:Fam #cancer caregivg requires tasks that mayB physicaly,emotionaly,socialy,financiay demandng https://t.co/6VbBRYibvu #btsm |
| Lisa O'Leary @lisaoleary524 T3: My husband could not use computer/write/etc from start so I was the one researching. It was very daunting. #btsm |
| Liz Salmi @TheLizArmy Everyone dealing w/brain cancer could learn a lot from @lisaoleary524's experience as a caregiver. Not all ☀️ & 🌈. #btsm |
| Melanie Kabo @MelanieKabo RT @hedy_wald: T2Need support:Fam #cancer caregivg requires tasks that mayB physicaly,emotionaly,socialy,financiay demandng https://t.co/6VbBRYibvu #btsm |
| Hedy Wald @hedy_wald @lisaoleary524 Thank U for U, daunting indeed, can feel vaporized as a caregiver it's not abt me but it IS abt me too #btsm |
| Rick Franzo @braintumortalk T2.caregiver support material seems 2 be 4 cancer patients benign tumors can and do have as much impact on families #btsm #benignisnotfine |
| Heather 🇺🇸 @ZHeatherChamp @coratagge Hello! I can't recall do you have LDD too? Did you hear about @BTSMchat and their tweet chats? Are you around? #btsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T3 Role of care giver in #ClinTrials is evolving. Consider; the caregiver is closest & most constant observer, making their role vital #btsm |
| Lisa O'Leary @lisaoleary524 A3: Our care team did not really promote trials. I asked but it wasn't encouraged, partly cuz of his many complications. #btsm |
 | Patti & Ron Gauvin @pattigauvin #btsm I have been listening. Carer for 26 yr survivor |
| Rick Franzo @braintumortalk @dawnsonea @BTSMchat excellent!! #btsm #benignisnotfine |
 | Chloe Drew @ChloeDrew8 @BTSMchat @BrainCncrSlayer #btsm I'm here and listening also from Perth, Australia (I'm a caregiver) |
| Lisa O'Leary @lisaoleary524 The new Clinical Trial Finder that #NBTS launched is a fantastic resource. #btsm |
| Hedy Wald @hedy_wald @ShereesePubHlth Indeed, why 3% enrolled? mayB more attn. needed2 caregiver, health literacy etc WE ARE HERE #btsm |
| Liz Salmi @TheLizArmy @adamhayden We missed you. Lots of GBM talk. Many caregivers here. #btsm |
| Hedy Wald @hedy_wald T3J.Schnall, CEO:Natl Family Caregivers Assoc: “ #caregiver is critical2success of a pt’s participation in clinical trial” #btsm |
| Heather 🇺🇸 @ZHeatherChamp @braintumortalk What is that hashtag? #btsm |
| Lisa Fields @lisafieldsms RT @lisaoleary524: T3: T3: My husband could not use computer/write/etc from start so I was the one researching. It was very daunting. #btsm |
| Liz Salmi @TheLizArmy RT @ShereesePubHlth: T3 Role of care giver in #ClinTrials is evolving. Consider; the caregiver is closest & most constant observer, making their role vital #btsm |
| Lisa O'Leary @lisaoleary524 @ShereesePubHlth I so relate to this. No one knew Patrick's case better than I did. I was the one with him, watching 24/7. #btsm |
| Charlie Blotner @CBlotner_ How often do we stop and think about a caregiver's experience as "vaporized?" I hadn't until now. Thank you. #btsm https://t.co/K3dLxw2gfg |
| Hedy Wald @hedy_wald T3 #cancer #ClinicalTrials – use pt-ctred & caregiver-ctred language4health literacy #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ T3: Dr. Shou stressed importance of caregiver involvement at the recent ABTA conference! He said it's a secret of long term survival. #btsm |
| Liz Salmi @TheLizArmy @pattigauvin Great to see you here Patti. Give Ron a hug for me. #btsm |
| Heather 🇺🇸 @ZHeatherChamp @CBlotner_ Vaporized? In what way? #btsm |
| Hedy Wald @hedy_wald T3 #Patientengagement #patientexperience #patientempowerment, #SDM Can we use word caregiver2? #btsm |
| Hedy Wald @hedy_wald @ZHeatherChamp @CBlotner_ You can feel invisible. #btsm |
| Lisa Fields @lisafieldsms RT @TheLizArmy: Everyone dealing w/brain cancer could learn a lot from @lisaoleary524's experience as a caregiver. Not all ☀️ & 🌈. #btsm |
| Hedy Wald @hedy_wald @Sabine_NJ Id like to hear more about him and this, can u provide info #btsm |
| Hold Your Head Up 💎 @HYHUTriangle T3: Duke Cancer Center, has so many available programs to assist caregivers with a support team. #BTSM https://t.co/qRSTwd8Dka |
| Lisa O'Leary @lisaoleary524 We talked about using the word "care partner" instead of "caregiver" at one point. I like that so much better. #btsm |
| Hedy Wald @hedy_wald T3 Clinical trials4 #braintumors @NCI https://t.co/YAPPLMixvQ #btsm |
| Lisa O'Leary @lisaoleary524 Otherwise you can feel like a parent-child instead of loving spouse - hard on both partners. #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T3: I've been a patient for 9 years. So much has changed in care since my initial diagnosis. I am in a position to run point #btsm |
| Liz Salmi @TheLizArmy RT @lisaoleary524: We talked about using the word "care partner" instead of "caregiver" at one point. I like that so much better. #btsm |
| Melanie Kabo @MelanieKabo UCSF is the only hospital that called my husband to check in on him, that alone was so amazing to him and helpful to feel valued. #btsm |
| Hedy Wald @hedy_wald @lisaoleary524 I have mixed feelings on that, my husband is often not a care partner, he needs help #btsm |
| Lisa O'Leary @lisaoleary524 @hedy_wald @lisaoleary524 I get that. Truthfully Patrick couldn't help me with anything. I just liked the idea of empowering him. #btsm |
| Hedy Wald @hedy_wald @lisaoleary524 This is a key issue and not discussed enough, the role changes& can be intolerable at times #btsm |
| Liz Salmi @TheLizArmy On being a care partner... MT @lisaoleary524 You can feel like a parent-child instead of loving spouse - hard on both partners. #btsm |
| Liz Salmi @TheLizArmy WOW MT @MelanieKabo UCSF is only hospital that called my husband to check in on him, that was so amazing and helpful to feel valued #btsm |
| Melanie Kabo @MelanieKabo RT @TheLizArmy: On being a care partner... MT @lisaoleary524 You can feel like a parent-child instead of loving spouse - hard on both partners. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @TheLizArmy: On being a care partner... MT @lisaoleary524 You can feel like a parent-child instead of loving spouse - hard on both partners. #btsm |
| Rick Franzo @braintumortalk @ZHeatherChamp #btsm stands for brain tumor social media |
| Heather 🇺🇸 @ZHeatherChamp @TheLizArmy Very similar to parent-child relationship, too. Very very difficult. @lisaoleary524 #btsm |
| Jeff Cee @jeff_ccc @BTSMchat T2: I find that attending a support group specific to brain tumour patients & caregivers has been very helpful. #BTSM |
| Heather 🇺🇸 @ZHeatherChamp @braintumortalk Nono the other one? Benign something? #btsm |
| Lisa O'Leary @lisaoleary524 A3 for me there was a lot of fear with trials - not well understood - I felt responsible for saving him and was afraid to try new tx #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T3: Ppl living w/low grade glioma (LGG) live longer w/disease, are more likely to take lead in care decisions. #btsm |
| Hedy Wald @hedy_wald T3Pt-Repd Distres-6thVitalSign #Cancer Care&Clinl Trials Asses fam caregivr distress? Relevnt2managePt care https://t.co/S3gSi47frb #btsm |
| Melanie Kabo @MelanieKabo @TheLizArmy And UCSF was my 5th surgery and 4th hospital after 5.5 years with this tumor, so that's saying something! #btsm |
| Hold Your Head Up 💎 @HYHUTriangle T2: Listen and respect a loved one's desires. Always let them participate in all discussions with caregiver and medical team. #BTSM https://t.co/kEr8XSPe2h |
 | RaeLynne @TheRaeLynne #BTSM |
| Hedy Wald @hedy_wald @lisaoleary524 How do we fight the fear? A ? 4docs&pharma, how engage pts&caregivers in clinl trials? #btsm |
| Lisa Fields @lisafieldsms RT @TheLizArmy: On being a care partner... MT @lisaoleary524 You can feel like a parent-child instead of loving spouse - hard on both partners. #btsm |
| Patti & Ron Gauvin @pattigauvin @thelizarmy He says awwww. Hugs to you #btsm |
| Lisa O'Leary @lisaoleary524 @hedy_wald @lisaoleary524 I think it needs to be part of very first conversation for tx - not a last option #btsm |
| Hedy Wald @hedy_wald T3 #btsm |
| Lisa Fields @lisafieldsms RT @hedy_wald: @lisaoleary524 This is a key issue and not discussed enough, the role changes& can be intolerable at times #btsm |
| Charlie Blotner @CBlotner_ I've spoken with caregivers who think the word in itself dissolves the intimacy of relationships. Thoughts? #btsm https://t.co/04qut6X4uV |
| Liz Salmi @TheLizArmy @hedy_wald As a clinician, did you find that your access to journal articles/behind the paywall, was helpful for you? Or TMI? #btsm |
| Lisa O'Leary @lisaoleary524 @hedy_wald If we talk about it right up front, it doesn't seem so "mad scientist" #btsm |
| Hedy Wald @hedy_wald T3 fam #cancer caregivrs on grant review panels research authors aswellas study subjects,co-editors at medl journals (Pts already R) #btsm |
| Heather 🇺🇸 @ZHeatherChamp @braintumortalk Yes. #btsm |
| Lisa O'Leary @lisaoleary524 @CBlotner_ It can - physically, obviously - but I will say even in the chaos Patrick and I achieved intimacy we never had before #btsm |
| Liz Salmi @TheLizArmy @hedy_wald To engage patients in clinical trials: We need to be receiving care at a place that is offering the trials, for one... #btsm |
| Heather 🇺🇸 @ZHeatherChamp @Sabine_NJ @braintumortalk Really?! Who created it? Never heard or seen it until tonight. #btsm |
| Hedy Wald @hedy_wald @TheLizArmy @hedy_wald Good ?, TMI, Thank goodness we trust our medl team @danafarber they guided us well #btsm |
| Melanie Kabo @MelanieKabo T3 My husband has helped me decide if I should do all of the 3 clinical trials I have done and we talk about the time and benefits. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @TheLizArmy: @hedy_wald To engage patients in clinical trials: @hedy_wald To engage patients in clinical trials: We need to be receiving care at a place that is offering the trials, for one... #btsm |
| Charlie Blotner @CBlotner_ T3: A good, and tough question. What are the #bioethics of marketing towards caregivers' emotions to enroll family in clinical trials? #btsm |
 | Matthew Katz, MD 🟦 @subatomicdoc @BTSMchat Better late than never! Matt Katz, radiation oncologist joining. Hi folks #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc RT @TheLizArmy: @hedy_wald As a clinician, did you find that your access to journal articles/behind the paywall, was helpful for you? Or TMI? #btsm |
| Rick Franzo @braintumortalk @ZHeatherChamp benign indicates something is harmless and brain tumors certainly are not!even had a nurse tell me just that!Harmless. #btsm |
| Hedy Wald @hedy_wald side effects were toughttoughtough had to d/c The stack of paper abt the trial mentions this risk but we Rdealing w/GBM, we went 4ward #btsm |
| Charlie Blotner @CBlotner_ @lisaoleary524 I love this kind of love. Thank you for sharing, again. #btsm |
| Lisa Fields @lisafieldsms Excellent Tweet Chat going on for the next 20 min. #BTSM Brain Tumor Social Media Joint in w/ @TheLizArmy @hedy_wald along with others. |
| Hedy Wald @hedy_wald @subatomicdoc @BTSMchat Bless yr heart #btsm |
 | Elizabeth Gundersen @Top_Gundersen @BTSMchat @hedy_wald Hi All, just wanted to say thank you for sharing and educating people/providers like myself. I can't stay but will catch up! #BTSM |
| Liz Salmi @TheLizArmy @subatomicdoc Thanks for joining, Matt! Have you med @xelamb? He's a #radonc new to #btsm. #btsm |
| Heather 🇺🇸 @ZHeatherChamp @braintumortalk Oh yes, yes. I have gangliocytoma, know very well benign brain tumors are JUST AS DANGEROUS. Did you create that hashtag? #btsm |
| Melanie Kabo @MelanieKabo @CBlotner_ for me, my husband is one of the deciding factors in whether or not I do a clinical trial, I see marketing to him ethical. #btsm |
| Liz Salmi @TheLizArmy RT @MelanieKabo: T3 My husband has helped me decide if I should do all of the 3 clinical trials I have done and we talk about the time and benefits. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @ZHeatherChamp @braintumortalk I have no idea, my tumor was not benign. If I took a guess, I'd say Rick himself ;-) #btsm |
| Hold Your Head Up 💎 @HYHUTriangle Happening now!🧠 #BTSM #BTSMchat https://t.co/dULZsozdU9 |
| Brian Alexander @xelamb @lisaoleary524 @hedy_wald Agree with this 100%. Trials are about access to new medications and learning as much as we can from every patient's journey. #btsm |
| Melanie Kabo @MelanieKabo RT @HYHUTriangle: Happening now!🧠 #BTSM #BTSMchat https://t.co/dULZsozdU9 |
| Hedy Wald @hedy_wald @CBlotner_ I am intrigued w/this vital ?, TY. I spoke on hype&hope at a nanotech conference, Got #ethics ? #btsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @subatomicdoc @BTSMchat Hi Dr. Katz. imagine running into you here. #btsm |
| Lisa Fields @lisafieldsms RT @MelanieKabo: T3 My husband has helped me decide if I should do all of the 3 clinical trials I have done and we talk about the time and benefits. #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @TheLizArmy @xelamb Actually I know @xelamb well - we're having coffee soon! Great person in #radonc and glad he's here for #btsm |
| Brian Alexander @xelamb @lisaoleary524 @hedy_wald But suggestions about more effectively engaging caregivers are certainly welcome! #btsm |
| Hold Your Head Up 💎 @HYHUTriangle RT @hedy_wald: T2Need support:Fam #cancer caregivg requires tasks that mayB physicaly,emotionaly,socialy,financiay demandng https://t.co/6VbBRYibvu #btsm |
| Thalía Reséndez @TR_CICS RT @TumorWarrior: The latest Brain Tumor Awareness! https://t.co/8UJbC2KER4 Thanks to @theIBTA #btsm | |
| Liz Salmi @TheLizArmy @hedy_wald Oh, you might know @xelamb, from @DanaFarber. He jumped into the chat earlier. #btsm |
| Lisa O'Leary @lisaoleary524 @CBlotner_ I think that appealing to a spouse is not just ethical, it's critical - patients trust our judgment and we 2b encouraged #btsm |
| Liz Salmi @TheLizArmy @hedy_wald May I ask, which trial(s) have you be participating in? #btsm |
| Charlie Blotner @CBlotner_ RT @lisaoleary524: @CBlotner_ I think that appealing to a spouse is not just ethical, it's critical - patients trust our judgment and we 2b encouraged #btsm |
| Liz Salmi @TheLizArmy RT @lisafieldsms: Excellent Tweet Chat going on for the next 20 min. #BTSM Brain Tumor Social Media Joint in w/ @TheLizArmy @hedy_wald along with others. |
| Melanie Kabo @MelanieKabo @subatomicdoc @TheLizArmy @xelamb I start radiation this week and I'm so nervous!! #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @ShereesePubHlth @BTSMchat Hi Shereese! Good to see you. My typing is my running! #btsm |
| Hedy Wald @hedy_wald @xelamb @lisaoleary524 @hedy_wald Dr Wen @danafarber turned 2me2ask &how RUdoing? It is so meaningful, we care4sickness w/clinl trial #btsm |
| Lisa O'Leary @lisaoleary524 @xelamb @lisaoleary524 @hedy_wald I would have liked to have our team go through trial options - show us how to search sites/forums #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ T3: I have never thought about it. If I need a clinical trial, I'm guessing I'll be making the decision together with @schwab_msb #btsm |
| Charlie Blotner @CBlotner_ @subatomicdoc @xelamb When tchat & radiation worlds collide..glad to have you both here tonight! I love/hate this small #raconc world. #btsm |
| Rick Franzo @braintumortalk @Sabine_NJ @ZHeatherChamp I did as far as I know. #btsm #benignisnotfine |
| Hedy Wald @hedy_wald @MelanieKabo @subatomicdoc @TheLizArmy @xelamb Stay strong, radiation oncologists are angels, ask the ?s u need, the techs so nice #btsm |
| Liz Salmi @TheLizArmy @subatomicdoc @ShereesePubHlth All the cool people are hanging out in @BTSMchat. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @braintumortalk I knew it! #btsm |
| Hedy Wald @hedy_wald @lisaoleary524 @xelamb @hedy_wald Interesting point, our team recd a trial as fitting&what protocol husband could join #btsm |
| Hedy Wald @hedy_wald T4Get the stats out there 2prevent ostrich as a society #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ T4: Hubby and I will be presenting TOGETHER at the upcoming Patient & Caregiver meeting in NYC by the ABTA! #btsm |
| Liz Salmi @TheLizArmy @MelanieKabo @subatomicdoc @xelamb When? What day do you start? Pls "live tweet" when you are not getting radiation. ;) #btsm |
| Hedy Wald @hedy_wald T4‘15 NatlAllianceCaregivg:approx43.5 million USadults provided care2adult or child (4serious/chrnic health conditn) in precedng 12mo #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @MelanieKabo @TheLizArmy @xelamb Hi Melanie: Understandable - radiation is an unknown to many which doesn't help when things feel uncertain. #btsm |
| Hedy Wald @hedy_wald @Sabine_NJ that's huge #btsm |
| Lisa O'Leary @lisaoleary524 A4 Perhaps having fora like this one - a place for caregivers to directly engage multiple specialists #btsm |
| Hedy Wald @hedy_wald T4Stress of caregiving can take as many as 10yrs off a caregiver’s life #btsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T4 They can join PACs, speak at conventions, publish more often #BTSM |
| Hold Your Head Up 💎 @HYHUTriangle Thanks for sharing! https://t.co/zXmqjaZMPK |
| Hedy Wald @hedy_wald T4‘15 Natl Alliance Caregiving: #cancer 4th main reason ppl needed family caregivr #btsm |
| Liz Salmi @TheLizArmy @cherimarsocci I love this so much. #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @MelanieKabo @TheLizArmy @xelamb The radiation therapists are usually fantastic, very good 'people persons'. It takes a week or so to settle in. Wishing you well #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc RT @hedy_wald: @MelanieKabo @subatomicdoc @TheLizArmy @xelamb Stay strong, radiation oncologists are angels, ask the ?s u need, the techs so nice #btsm |
| Hedy Wald @hedy_wald @ShereesePubHlth Yes but...if caring4ill pt not so easy2travel etc, conferences need2help as best possible #btsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T4 In case of clarification; PACs= Patient Advisory Committees. #BTSM |
| Lisa O'Leary @lisaoleary524 A4 Having caregivers of survivors and those who are gone speak at BT groups - let them feel heard and understood #btsm |
| Rick Franzo @braintumortalk @Sabine_NJ Excellent!! That's perfect!! #btsm #benignisnotfine |
| Melanie Kabo @MelanieKabo @Sabine_NJ Wish I could be there with my hubby to see you both present! #btsm |
| Hedy Wald @hedy_wald T4 1 in 5 carers gives up employment to care in UK https://t.co/OEeCIdiSnZ #btsm |
| Liz Salmi @TheLizArmy @ShereesePubHlth Sometimes referred to as PFACs = Patient-Family Advisory Councils #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @xelamb @hedy_wald @MelanieKabo @TheLizArmy Definitely! Weekly visits with your #radonc doctor are an opportunity for continued support, learning and help. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @ShereesePubHlth: T4 They can join PACs, speak at conventions, publish more often #BTSM |
 | I Live Now Rachel 💎 @KickBrainTumors RT @HYHUTriangle: Happening now!🧠 #BTSM #BTSMchat https://t.co/dULZsozdU9 |
| Lisa O'Leary @lisaoleary524 T4 I didn't get involved until after Patrick's death, but I am feeling more and more empowered the more engaged I am #btsm |
| Charlie Blotner @CBlotner_ @hedy_wald .@prof_jdb works at the intersection of science and technology (among many others) re: #bioethics. Another great sounding board.. #btsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @TheLizArmy There's not enough of them IMHO but they are growing #BTSM |
| Hedy Wald @hedy_wald T4 What not2say when Ur speaking w/a family brain #cancer #caregiver “Is it in remission?” It ain’t. #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T4: Husband is currently playing video games so I am asking if he needs any help having his voice heard... #btsm |
| Melanie Kabo @MelanieKabo T4 Asking questions of the doctors that the patient doesn't think of and by us patients helping them get their needs met. #btsm |
 | nobism @nobismhealth RT @hedy_wald: T3 #Patientengagement #patientexperience #patientempowerment, #SDM Can we use word caregiver2? #btsm |
| Charlie Blotner @CBlotner_ @Sabine_NJ Love love love this!!! #btsm |
| Lisa O'Leary @lisaoleary524 T4 I'm an atty and considering going back 2 school for cont educ program in Health Care Advocacy - use experience to help others #btsm |
| Hedy Wald @hedy_wald T4 Orgns w/better pt exp: better safety records&report better financial margins https://t.co/FXDaXrGAYf #caregiver exp tied2pt exp! #btsm |
| Patti & Ron Gauvin @pattigauvin I get so much support by being an advocate for @nbtstweets #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @CBlotner_ @xelamb #radonc is a small specialty. I'm getting old enough that it's getting really small world. #btsm |
| Hedy Wald @hedy_wald @lisaoleary524 where is that program? good 4 U #btsm |
| Hold Your Head Up 💎 @HYHUTriangle So true! https://t.co/89vh2AsTxp |
| Charlie Blotner @CBlotner_ @hedy_wald Citation? :) #btsm |
| Lisa O'Leary @lisaoleary524 @hedy_wald @lisaoleary524 There are lots of them, but looking at UC Berkeley Extension - I don't think I can afford doing full MPH #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @hedy_wald: T4Stress of caregiving can take as many as 10yrs off a caregiver’s life #btsm |
| Rick Franzo @braintumortalk T4. Keep participating in support groups, the meet up dynamic is crucial for comparing notes with others in similar situations #btsm |
| Liz Salmi @TheLizArmy @lisaoleary524 If you do this... I hope it's in Sacramento! #btsm |
| Hedy Wald @hedy_wald @CBlotner_ @hedy_wald re: 10 yrs off a caregiver's life? that was Eppel et al #btsm |
| Charlie Blotner @CBlotner_ @ShereesePubHlth Hard to do these things when you're caregiving, though! #btsm |
| Hedy Wald @hedy_wald @CBlotner_ @ShereesePubHlth Exactly #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @MelanieKabo: T4 Asking questions of the doctors that the patient doesn't think of and by us patients helping them get their needs met. #btsm |
| Lisa O'Leary @lisaoleary524 Would also help to have resources for financial challenges for patients/survivors - I know that I didn't know what 2 expect w/o him #btsm |
| Liz Salmi @TheLizArmy @hedy_wald @CBlotner_ I've heard 20 years off a caregivers life, shortened life for sure. #btsm |
| Hedy Wald @hedy_wald What abt society waking up&smelling the coffee? Caregiver benefits if have2quit work? Retraining? this is real #btsm |
| Liz Salmi @TheLizArmy @lisaoleary524 Lisa, you are seriously a badass wealth of knowledge/insight into what is lacking for caregivers. #btsm |
| Melanie Kabo @MelanieKabo @TheLizArmy @BTSMchat Mine just put a movie on for the kids and went to shower since we were at the water park all day. #btsm |
| Lisa O'Leary @lisaoleary524 @TheLizArmy @hedy_wald @CBlotner_ No question, I have had more health problems since Patrick died than I care to admit #btsm |
| Liz Salmi @TheLizArmy RT @hedy_wald: What abt society waking up&smelling the coffee? Caregiver benefits if have2quit work? Retraining? this is real #btsm |
| Hedy Wald @hedy_wald T4 caregivr distress canB distressing4pts&have long-term health effects on both pts&caregivrs https://t.co/6VbBRYibvu #btsm |
| Charlie Blotner @CBlotner_ T4: This puts the responsibility to do even more on an already strained population. Start by asking what we can do with and for them. #btsm |
| Hedy Wald @hedy_wald @lisaoleary524 @TheLizArmy @hedy_wald @CBlotner_ Indeed that's true I'm sorry2hear it but not surprised #btsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @CBlotner_ And yet some do it. Also, the options I mentioned have remote and mobile optimization . #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ Is there a caregiver appreciation day in the US? #btsm |
| Lisa O'Leary @lisaoleary524 @TheLizArmy @lisaoleary524 I hope someday I'll be able to transform the experience into my vocation - caregivers need help too #btsm |
| Rick Franzo @braintumortalk @hedy_wald I believe it I know how hard it hit my wife, and she's one of the toughest people Ever! Takes a huge toll!#btsm #benignisnotfine |
| Hedy Wald @hedy_wald At cancer conference I heard someone say Alzheimers Assoc way ahead of cancer community in advocating4caregivers #btsm |
 | Sexy Health Tips @sexyhealthtips RT @lisaoleary524: T4 I'm an atty and considering going back 2 school for cont educ program in Health Care Advocacy - use experience to help others #btsm |
| Liz Salmi @TheLizArmy @hedy_wald TWITTER POLL: Should all caregivers seek counseling? Therapy? #btsm |
| Hedy Wald @hedy_wald @braintumortalk @hedy_wald It's something that is difficult2talk abt, caregiver doesn't have #cancer but we suffer #btsm |
| Charlie Blotner @CBlotner_ @hedy_wald Thank you for joining us tonight, Hedy. I love a guest mod who can cite their sources and provide links to further reading! #btsm |
| Hedy Wald @hedy_wald @Sabine_NJ We need one 4syre #btsm |
| Lisa O'Leary @lisaoleary524 @TheLizArmy @hedy_wald Some people really don't feel comfortable in counseling - but it literally saved my life. Was suicidal after P. #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @TheLizArmy @hedy_wald @CBlotner_ The stressors for caregivers may differ for people with brain tumors vs other cancers https://t.co/gfz9iTzv8K #btsm |
| Hedy Wald @hedy_wald I meant 4 sure #btsm |
 | Guy Lipof - גיא @Project2Program @BTSMchat T2, When Susie was diagnosed in '99, there was not much on the internet. Now there are great primers from all tertiary cancer centers. #BTSM |
| Liz Salmi @TheLizArmy @adamhayden You're the worst/best! #btsm |
| Jeff Cee @jeff_ccc @hedy_wald Agree! I totally go out of my way to, genuinely, thank people & praise people. The world needs more positivity. #BTSM |
| Liz Salmi @TheLizArmy RT @hedy_wald: At cancer conference I heard someone say Alzheimers Assoc way ahead of cancer community in advocating4caregivers #btsm |
| Melanie Kabo @MelanieKabo RT @CBlotner_: @hedy_wald Thank you for joining us tonight, Hedy. I love a guest mod who can cite their sources and provide links to further reading! #btsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @TheLizArmy @hedy_wald When I was a Peds admin director, I thought this was a very good idea for parents of medically fragile children #btsm |
| Hedy Wald @hedy_wald @lisaoleary524 @TheLizArmy @hedy_wald Need a space to yell&cry even if not suicidal, this is a huge trauma4caregvers, life is upended #btsm |
| Lisa Fields @lisafieldsms MT @MelanieKabo @UCSF only hospital who called husband to check on him. Amazing to Him/Helpful to feel Valued. #btsm cc @ConsanoScott |
| Lisa Fields @lisafieldsms RT @CBlotner_: @hedy_wald Thank you for joining us tonight, Hedy. I love a guest mod who can cite their sources and provide links to further reading! #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @TheLizArmy @hedy_wald What would be ideal is if all caregivers can get access to training, learning how to help #btsm patient, self and other family |
| Lisa Fields @lisafieldsms RT @MelanieKabo: T4 Asking questions of the doctors that the patient doesn't think of and by us patients helping them get their needs met. #btsm |
| Hedy Wald @hedy_wald @jeff_ccc @hedy_wald Attitude of #gratitude warms the heart, helps get u thru the day #btsm |
| Hold Your Head Up 💎 @HYHUTriangle T4: Every caregivers situation is different. Its good to know where to get your information and assistance. #BTSM @BTSMchat |
 | Leilani Graham @LeilaniRGraham 👏👏👏 yes. https://t.co/U642Pa9hkv |
| Charlie Blotner @CBlotner_ @adamhayden @subatomicdoc @xelamb The #radonc nerd in me is screaming. This is too good @adamhayden. 😂🤓 #btsm |
| Lisa O'Leary @lisaoleary524 @hedy_wald @lisaoleary524 @TheLizArmy Absolutely. Need to feel safe to express your pain without guilt. #btsm |
| Charlie Blotner @CBlotner_ RT @subatomicdoc: @TheLizArmy @hedy_wald @CBlotner_ The stressors for caregivers may differ for people with brain tumors vs other cancers https://t.co/gfz9iTzv8K #btsm |
| Melanie Kabo @MelanieKabo @hedy_wald @lisaoleary524 @TheLizArmy Agreed, my husband and I went for a while, It's a great neutral place to talk and get support #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @adamhayden @CBlotner_ @xelamb Thanks! But I caught the tail end of planning some radiation with fluoroscopy @sloan_kettering - coming up on 20 yrs #btsm |
| Lisa O'Leary @lisaoleary524 @BTSMchat @hedy_wald Thank you so much! I can't believe it's over already. This was wonderful. I'll be back!! #btsm |
| Hedy Wald @hedy_wald @hedy_wald @jeff_ccc Awwwww shucks....it's an honor&derived support&love here.It's been an ordeal, an unanticipated 1, try my best #btsm |
| Lisa O'Leary @lisaoleary524 Right before NBTS Scientific Summit! I'll be there! #btsm |
| Hedy Wald @hedy_wald @lisaoleary524 @BTSMchat @hedy_wald Seriously time flies #btsm |
| Lisa Fields @lisafieldsms Thank you @hedy_wald for being such a valuable guest #BTSM. Your Knowledge #cargiving @Clinical and Twitter Skills are Remarkable. |
| Charlie Blotner @CBlotner_ @TheLizArmy Hard to say that any sort of broad sweeping, mandatory policy is always going to be difficult to be the right fit for all. #btsm |
| Guy Lipof - גיא @Project2Program @BTSMchat T2, I now have access to neuro-onc journals & follow clinical trials. For articles I do not have access to, I ask doctors for them. #BTSM |
| Melanie Kabo @MelanieKabo @lisaoleary524 When and where is the NBTS Scientific Summit? #btsm |
| Hold Your Head Up 💎 @HYHUTriangle Advocate for yourself: I love helping to spread more awareness on brain cancer/ brain tumors. #btsm #btsmChat Everyone have a goodnight! TY https://t.co/VXdOeF3jZV |
| Hedy Wald @hedy_wald @HYHUTriangle @BTSMchat Indeed there is no 1 representative story, need "narrative humility" from practitiioners2hear caregiver story #btsm |
| Hedy Wald @hedy_wald @MelanieKabo @lisaoleary524 Yes what is that about? #btsm |
| Liz Salmi @TheLizArmy Thank you, Hedy! Thank you for suggesting this important topic! My husband and I are talking more about caregiver balance. #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc Hey now! Now I am feeling older 😲 #btsm https://t.co/grmKwIUoUe |
| Hedy Wald @hedy_wald @lisafieldsms @hedy_wald @clinical You rock my dear , full of praise and kind comments #btsm |
| Lisa O'Leary @lisaoleary524 @MelanieKabo @lisaoleary524 October 5-6 in Boston for Natl Brain Tumor Society - DM me I'll send deets! #btsm |
| Hedy Wald @hedy_wald @TheLizArmy Oy I want to understand caregiver "balance" ;-) #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @lisafieldsms @hedy_wald @clinical Hi LIsa! Good to see you #btsm |
| Lisa O'Leary @lisaoleary524 https://t.co/VdpwGN2K3a #btsm |
| Rick Franzo @braintumortalk @hedy_wald I'm convinced that caregivers suffer more than patients on a certain level. Outside looking in vs inside looking out #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @hedy_wald @lisaoleary524 @BTSMchat Thank you all for a great chat, have a great night and remaining Labor Day weekend #btsm |
| Lisa Fields @lisafieldsms @subatomicdoc @hedy_wald @clinical Hi Matt. Thanks. It was a great chat #BTSM. |
| Liz Salmi @TheLizArmy @hedy_wald We're figuring it out! #btsm |
| Hedy Wald @hedy_wald @braintumortalk @hedy_wald A huge topic. Full of energy,empty nest plans&dreams are gone,etc. feeling like no 1 understds except here #btsm |
| Hedy Wald @hedy_wald @subatomicdoc @hedy_wald @lisaoleary524 @BTSMchat tx 4joining us, taking of yr free time 2care&share #btsm |
| Melanie Kabo @MelanieKabo Good night all. Radiation and Temador start for me sometime this week. Hoping to finish quickly because hubs booked a Disney Cruise! #btsm |
| Hedy Wald @hedy_wald @BTSMchat @TheLizArmy @CBlotner_ @adamhayden @hedy_wald TY! #btsm |
| Rick Franzo @braintumortalk @hedy_wald thank you so much for hosting this chat this evening! Very informative and interesting! #btsm #benignisnotfine |
| Brian Alexander @xelamb Thanks everyone. Wonderful topic! Great to hear all the stories and perspectives. #btsm |
| Lisa O'Leary @lisaoleary524 @hedy_wald @BTSMchat @TheLizArmy @CBlotner_ @adamhayden Thank you all! Goodnight! #btsm |
| Liz Salmi @TheLizArmy @MelanieKabo Now that's something to look forward to! #btsm |
| Liz Salmi @TheLizArmy @lisaoleary524 Great to "see" you on here. We need to get Thai food again soon. ;) #btsm |
 | Margaret “Meg” Chisolm, MD @whole_patients RT @lisaoleary524: We talked about using the word "care partner" instead of "caregiver" at one point. I like that so much better. #btsm |
| Hedy Wald @hedy_wald Our wonderful radiation oncologist, bless yr heart @danafarber 1of the reasons my husband walks this earth 2day #btsm https://t.co/vt09EAwwtF |
| Rick Franzo @braintumortalk @BTSMchat @hedy_wald thank you so much for hosting this chat this evening! Very informative and interesting! #btsm #benignisnotfine |
| Hedy Wald @hedy_wald @lisaoleary524 Beautiful2C our doc present there "Maximizing Opps: Therapeutic Strategies&Blood-Brain Barrier Dr Wen&colleagues #btsm |
| Hedy Wald @hedy_wald @braintumortalk @BTSMchat @hedy_wald Thank U 4 being U #btsm |
| Hedy Wald @hedy_wald @MelanieKabo Hub back on Temadar next week once again here we go, we'll be thinking of u #btsm |
| Rick Franzo @braintumortalk @hedy_wald absolutely true #btsm |
| Hedy Wald @hedy_wald Thanks all have a good night, best wishes4strength, fortitude, courage, love2give&receive #btsm |
| Melanie Kabo @MelanieKabo @hedy_wald Best of luck to him. I'll be doing the low dose through radiation and then the high dose for 6 months after a month break. #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @hedy_wald @lisaoleary524 @BTSMchat My pleasure Hedy! I learn more than I can give back by participating in the #btsm community. Thank you all 4 helping me become a better doc💚 |
| Guy Lipof - גיא @Project2Program @BTSMchat T3, Being aware of appropriate trials nearby and having a list of questions along w/ understanding adverse events/ side effects is key #BTSM |
| Hedy Wald @hedy_wald @MelanieKabo @hedy_wald Do nice things for you, treat yourself, stay strong, we did ok, he's alive 5 years out w/GBM #btsm |
#BTSM content from Twitter.