#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 common among white men and women. Learn more about this #cancer here: https://t.co/B4O2GmuP1S #BTSM https://t.co/GBajZb2zfq |
 | Brain Tumour Fdn @BrainTumourFdn Tonight’s @BTSMchat is about to start #btsm |
 | #BTSM chat @BTSMchat @NCICancerStats We see you, @NCICancerStats! Come join us for a live chat some time. #BTSM https://t.co/7360MAAqJm |
 | Lisa O'Leary @lisaoleary524 Hi friends. Lisa here. Former care partner to my husband Patrick who was dx with GBM in 9/2014 and passed away in 7/2015. I started calling myself a “care partner” bc the term “caregiver” felt almost maternal, and I wanted to make him feel empowered instead of doted on. #BTSM |
 | Sean Sachdev, MD @SeanSachdevMD @BTSMchat Hi all, happy to join (mainly looking forward to listen with tonight's topic), radiation oncologist from Chicago #btsm |
 | Liz Salmi @TheLizArmy @BTSMchat Hey everyone! Liz here, living with grade II #astrocytoma for 10 years. Seizures, 2 surgeries, 24 months Temodar. Now just chilling, watching and waiting. I serve on the board of directors for @NBTStweets and love this community. 👋 #BTSM |
 | I CANcer @hawktober4bt NFP raising brain tumor awareness that’s fortunate to work with heroes like y’all. #BTSM |
 | Erica Robinson @eleighrobs @BTSMchat Hi everyone! Erica here. Boston based @NBTStweets advocate, survivor, team captain. The @NewEnglandNBTS #bostonbraintumorwalk is 2 weeks from today if anyone is going to be in town! #BTSM |
| Brain Tumour Fdn @BrainTumourFdn @BTSMchat Just here to wish the Canadian #braintumour community Happy Thanksgiving! #btsm |
| Liz Salmi @TheLizArmy @sean_sachdev @BTSMchat Great to have you here @sean_sachdev! Will you be at #SNO18 in November? #btsm |
 | KateWhy @KattyBatty1 @BTSMchat #BTSM. parent to a teen diagnosed in 2013 with a JPA. Listening tonight. |
| Liz Salmi @TheLizArmy @hawktober4bt Glad you're here tonight! What have you been up to lately? #btsm |
 | Ginger Riley ~Eternal Optimist~ @gingerly21 RT @NCICancerStats: Brain and other nervous system cancer is most common among white men and women. Learn more about this #cancer here: Brain and other nervous system cancer is most common among white men and women. Learn more about this #cancer here: https://t.co/B4O2GmuP1S #BTSM https://t.co/GBajZb2zfq |
 | Malnati Brain Tumor Institute at Northwestern @BrainTumorInst @BTSMchat Happy and grateful to be listening #btsm |
| Erica Robinson @eleighrobs @BTSMchat @lisaoleary524 I gave a speech last month @FastTrek_ORG Synapse event, and used "care partner". Thought of you!! #BTSM |
 | 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat Hey everyone! Julia here, diagnosed with IIIrd ventricular colloid cyst in 2003. Surgery 2011. I co-facilitate the Brain Tumour Support Group at @CCQld. Recently stepped down from the board of BTAA. Researcher and patient 👋 #BTSM |
| Brain Tumour Fdn @BrainTumourFdn Question for the #braintumour caregivers in Canada, what do you call yourselves? Does this resonate with you? ⤵️ #btsm |
 | Liz Cramer @oncELLEogy Hi #BTSM, Liz in DC. Recently lost my second friend to #GBM. Two time #head2hill advocate. I work in Industry, trying to help as many people as possible gain access to #molecular profiling of their tumor. Here’s to listen and learn. |
 | Matt Cotcher @MLCotcher Evenin', folks. Matt here (Atlanta, GA). Ependymoma surgically resected from brain stem in 2007. Recurrence in 2017. Next MRI in 10 days. #scanxiety #btsm |
 | Kendra K @KMJtravels @BTSMchat Kendra, #glioblastoma in Seattle, so thankful for her main caregiver @elgauchogrub , along with @jjwgohuskies & @japhyjones 💜. #btsm |
| Liz Salmi @TheLizArmy @eleighrobs @BTSMchat @NBTStweets @NewEnglandNBTS Wish I could be at the brain tumor walk in Boston! I bet it will be WICKED awesome. #btsm |
| Sean Sachdev, MD @SeanSachdevMD @TheLizArmy @BTSMchat Definitely! Look forward to checking in from there 😎 #btsm |
 | Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD Pehaps #everolimus can be used to minimize cutaneous #neurofibromas #btsm |
| Liz Salmi @TheLizArmy @KattyBatty1 @BTSMchat So glad you are joining us! Your perspective is so needed in this community. #btsm |
| Brain Tumour Fdn @BrainTumourFdn @BTSMchat #grateful (see what we did there?) #btsm |
 | Johnny @Johnny70250027 Hello fierce advocate for storing tumors frozen, if surgery is scheduled., based on mid term data for DCVax-L Vaccine. I know the science, and adjuvant or comparable treatments. I am a shareholder in NWBio manufacturer of DCVax-L #btsm |
| Liz Salmi @TheLizArmy @adamhayden @BTSMchat @NBTStweets My new #BTSM starter GIF... https://t.co/8g3ePNVQzH |
| Liz Salmi @TheLizArmy @BrainTumorInst @BTSMchat Glad you could join us! #BTSM |
 | RaeLynne @TheRaeLynne @BTSMchat Not a positive milestone, but later this month will mark one year since my husband died from #GBM. I still can't decide if it feels like a long time or short time, but remain grateful for this community and its ongoing support. #BTSM |
 | Hedy Wald @hedy_wald TY @lisaoleary524 for yr courage #btsm |
| #BTSM chat @BTSMchat RT @BrainTumourFdn: Question for the #braintumour caregivers in Canada, what do you call yourselves? Does this resonate with you? ⤵️ #btsm |
| Erica Robinson @eleighrobs @TheLizArmy @BTSMchat @NBTStweets @NewEnglandNBTS 🤣 It's gonna be WICKED awesome! We usually go to Dunkin's after, bro! #BTSM https://t.co/KSyi1tWfp6 |
| Liz Cramer @oncELLEogy @adamhayden I am planning on it!!! #btsm #head2hill |
| Lisa O'Leary @lisaoleary524 @TheRaeLynne @BTSMchat Love to you. So much love. #BTSM |
| Brain Tumour Fdn @BrainTumourFdn Caregivers are so important on the #braintumour journey. Join the conversation at #btsm |
| #BTSM chat @BTSMchat RT @KMJtravels: @BTSMchat Kendra, #glioblastoma in Seattle, so thankful for her main caregiver @elgauchogrub , along with @jjwgohuskies & @japhyjones 💜. #btsm |
| Lisa O'Leary @lisaoleary524 T1 My husband’s #1 advocate, cheerleader, counselor, & best friend. His deficits were severe from day 1 and required 24/7 care. I took care of everything- meds, schedules, bills, home, fighting for the best care. Most importantly letting him know every day how loved he was #BTSM |
| Liz Salmi @TheLizArmy Me before tweet chat: Hey husband, want to join the #BTSM chat about patient/ care partner relationships? Husband: Do you want dinner tonight? Me: 😳 ... Yes... Husband: I guess you have my answer... |
 | Katie Mang @KatieMang @BTSMchat Lurking on #BTSM chat. Care partner to husband with GBM. Soaking up info from others on here while the rest of my house sleeps! |
| KateWhy @KattyBatty1 @BTSMchat T1/#BTSM. Care Partner. First role will always be the Parent, but it's also helping a teen transition to an adult who will have to make his own decisions about living with a tumor and potential treatment options. |
| Lisa O'Leary @lisaoleary524 @KatieMang @BTSMchat Glad you made it Katie - I thought about you when preparing the topics! #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor Increased posting due to attendance at #COGNO18 and participation in #BTSM Lots of brains incoming! |
| Erica Robinson @eleighrobs @adamhayden @BTSMchat @lisaoleary524 @FastTrek_ORG I've learned so much from all of you about the language we use. I will never use "lost their battle" ever again. I say "lost their LIFE" #BTSM The things we learn from each other along the way. #BTSM |
| Liz Salmi @TheLizArmy @TheRaeLynne @BTSMchat Thank you for sharing this. That is a significant milestone. #BTSM |
| Sean Sachdev, MD @SeanSachdevMD @BTSMchat From my perspective, someone as affected by the disease as the person next to them - sharing in everything, the ups and downs, the complete journey. #btsm |
| Liz Cramer @oncELLEogy RT @eleighrobs: @adamhayden @BTSMchat @lisaoleary524 @FastTrek_ORG I've learned so much from all of you about the language we use. I will never use "lost their battle" ever again. I say "lost their LIFE" #BTSM The things we learn from each other along the way. #BTSM |
| Liz Cramer @oncELLEogy @eleighrobs @adamhayden @BTSMchat @lisaoleary524 @FastTrek_ORG Me too- I definitely changed the way I speak about a diagnosis and death from #cancer #btsm due to learning from this community and #bcsm |
| Matt Cotcher @MLCotcher @BTSMchat T1: Care partner is an impossibly gray area between the desire to do everything for a patient, and the need to let a patient do things on their own. In short, they're #angels. #BTSM |
| Katie Mang @KatieMang @lisaoleary524 @BTSMchat Also glad to see some familiar faces on here. #BTSM. A topic I am becoming more familiar with these days! |
| Liz Salmi @TheLizArmy @BTSMchat T1 / Part 1: I think a care partner is anyone who is a NON-PAID person who contributes to the person dealing with this illness (whatever the diagnosis). This would be a family member or friend (maybe a colleague if help is needed at work). #BTSM |
| Johnny @Johnny70250027 Additionally fierce advocate for using 5-ala guided surgery for surgical resection to retrieve as much possible of tumor as possible. Currently in discussion with Health Quality Ontario for discussion on microscope technology implementation. #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T1 / Part 2: The role of a care partner could be to assist w/physical needs (showering, eating, physical rehab stuff), getting to appointments, staying organized with medications. And emotional support--just being there. #BTSM |
 | courtney @courtneybenisch @BTSMchat I cared for my mom, who passed from a GBM in 2016. The role was very unknown at the time and there is a lot of learning along the way. #BTSM |
 | Manmeet Ahluwalia, MD, MBA, FASCO @BrainTumorDoc @BTSMchat Care partner is critical to the care of the patient. They are integral part of decision making. Particularly on a clinical trial when there are frequent visits. #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T1/ the role of a care partner is to assist with management of day to day life and being a back up brain for those tough days. #BTSM |
| Brain Tumour Fdn @BrainTumourFdn #btsm |
| Lisa O'Leary @lisaoleary524 T2 EVERYTHING changed. I was responsible for my own life/job/responsibilities but also his. I was afraid that if I made the wrong choices and he died, it would be my fault. We were no longer able to do most of the things we enjoyed. We could not be intimate the last 6 mos. #BTSM |
| RaeLynne @TheRaeLynne @adamhayden SUCH an important point, and what a tricky balance this can be. #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T2/ Roles changed after diagnosis from equal partners to almost parent/child relationship due to cognitive impairments. #BTSM |
| Lisa O'Leary @lisaoleary524 T2 cont. Patrick suffered from postictal psychosis and was often disoriented, mean and violent. I knew it wasn’t him but it was very painful. I had to grieve the life we had planned long before he was gone. #BTSM |
| Erica Robinson @eleighrobs @BTSMchat T2/ As a patient, I had to let people help me. That was something I wasn't good at, and I found myself with no choice. #BTSM |
| courtney @courtneybenisch @BrainTumorDoc @BTSMchat Decision making was something we as a family were not prepared for going through treatments and making the final choices at the end. #BTSM |
| Hedy Wald @hedy_wald many of us invisible in society. financial toxicity if give up job etc - can we apply the term "underserved population" here for care partners or caregivers? when will society wake up on this? #btsm |
| courtney @courtneybenisch @adamhayden @BTSMchat Couldn’t agree more! #BTSM |
| Lisa O'Leary @lisaoleary524 Amen @hedy_wald #BTSM |
| Liz Cramer @oncELLEogy @lisaoleary524 This sounds very difficult. ☹️ Did you have family close to help? #btsm |
| Manmeet Ahluwalia, MD, MBA, FASCO @BrainTumorDoc @courtneybenisch @BTSMchat So sorry to hear that - when ever I meet a patient we make it clear that it takes a village to take care of the patient and everyone is on the same team. The main goal is best outcome for the patient. #btsm |
 | Terri Armstrong @Tsarmstrong01 Closing Conclusions and strategies to improve immumotherapy efficacyny @MRGneuroonc in glioma #COGNO2018 #BTSM https://t.co/Emq6KR96OD |
| Liz Salmi @TheLizArmy @BTSMchat T2 / So I have been living with a brain tumor for 10 years... And my relationship with my husband will never be the way it was before diagnosis. He is on heightened alert at all times... even though I am REALLY healthy/lucky. #BTSM |
 | Meera agar @meera_agar RT @Tsarmstrong01: Closing Conclusions and strategies to improve immumotherapy efficacyny @MRGneuroonc in glioma #COGNO2018 #BTSM https://t.co/Emq6KR96OD |
| Erica Robinson @eleighrobs @elisabethcramer @lisaoleary524 I'm so sorry. That had to be frightening for you both. #BTSM |
| Lisa O'Leary @lisaoleary524 @elisabethcramer His family was close by but unfortunately there was a great deal of toxicity between all of us, made so much worse by the circumstances and that his sister also died of GBM. They were angry and I was the target of frustration. My family wasn't close by but very supportive #BTSM |
| Hedy Wald @hedy_wald so how can we educate regarding inclusion of caregiver/care partner during communication training "relationship-ctred care" during medical education&oncology training and beyond? #btsm |
| Hedy Wald @hedy_wald precisely @eleighrobs we are so done with battle/war metaphors #btsm |
| Liz Salmi @TheLizArmy RT @hedy_wald: many of us invisible in society. financial toxicity if give up job etc - can we apply the term "underserved population" here for care partners or caregivers? when will society wake up on this? #btsm |
| Liz Cramer @oncELLEogy @lisaoleary524 I don’t know the right words. Unbearable is what comes to mind first. #btsm |
| Liz Salmi @TheLizArmy @hedy_wald Great point -- we need to talk more about financial toxicity for people dealing with brain tumors. This is one of the most financially toxic diseases in America! #BTSM |
| Liz Salmi @TheLizArmy RT @BrainTumorDoc: @courtneybenisch @BTSMchat So sorry to hear that - when ever I meet a patient we make it clear that it takes a village to take care of the patient and everyone is on the same team. The main goal is best outcome for the patient. #btsm |
| Liz Cramer @oncELLEogy @lisaoleary524 I wonder how frequently the caregiver/care partner is in this situation bc honestly I bet it is not in frequent. #btsm |
| RaeLynne @TheRaeLynne @BTSMchat We smartly followed the advice of Rob's neuro-onc and sooner than later after his diagnosis talked to a social worker about many things, including that. Before his 2nd surgery we reviewed / completed the POLST form. #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat I found it hard to ask for help (still do) but have learned to accept that sometimes I just cannot do it alone. Deficits can force us to be more humble and accepting. #BTSM |
| Liz Salmi @TheLizArmy @Tsarmstrong01 @MRGneuroonc 👋 Waving from #BTSM chat tonight! Learn lots at #COGNO2018. |
| Matt Cotcher @MLCotcher T2: Going from "engaged to be married" to "patient/care partner" was emotionally impossible even though we didn't realize it at the time. There was never an opportunity for a "newlywed/honeymoon phase". (1/2) #btsm |
| Lisa O'Leary @lisaoleary524 @elisabethcramer I'm sure it happens more often than people want to admit. His family accused me of some pretty awful stuff after he died, and we went through a yr with lawyers which was miserable (even though I AM a lawyer). I doubt most will share this experience bc so painful #BTSM |
| Hedy Wald @hedy_wald the suffering of watching your soulmate deteriorate is indescribable #btsm I am so sorry @lisaoleary524 I am trying to type here inbetween helping my husband w GBM preparing for bedtime, all my caregiving "duties" while trying2obtain support here |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat Making EoL decisions for my parents while on my own brain tumour roller coaster was particularly confronting and challenging. #BTSM |
| RaeLynne @TheRaeLynne @BTSMchat This forced us to have conversations we weren't really ready for, but proved vital later. When things changed, they changed quickly & at that point we could never have had the conversations we had. #BTSM |
| Lisa O'Leary @lisaoleary524 @hedy_wald I can imagine nothing more painful. I am here for you, any time you need to talk to someone who knows. Any. Time. #BTSM |
| Matt Cotcher @MLCotcher The reality, however uncomfortable, is that once patient/care partner roles are assumed, things change. (2/2) #btsm |
| Johnny @Johnny70250027 @BrainTumorDoc @courtneybenisch @BTSMchat Dr, can I be direct? Is their any roadblocks to saving tumors frozen, for DCVax, either from a science or politics point of view? Can you project downstream based on mesenchymal gene expression survival data with DCVax-L (n=44)? #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat Hi everyone! #btsm |
| Hedy Wald @hedy_wald heartbreaking @Ailuj_Nostrebor how can you maintain a romantic relationship within such a changed dynamic? is this discussed within the physician-patient-caregiver relationship? It can be the unspoken. And a source of pain #btsm |
| Lisa O'Leary @lisaoleary524 @BTSMchat @courtneybenisch Same, Courtney! I was trying so hard to control everything because I couldn't control the disease progression that I didn't let people help nearly as much as I should have. Led to PTSD dx 6 mos after he died. #BTSM |
| Terri Armstrong @Tsarmstrong01 What exactly is IMRT-intensity modulated immunotherapy takes one mean into lots of smaller beams allowing avoidance of critical structures -Dr Sulman #COGNO2018 #BTSM https://t.co/mYijP6HPAw |
| Kendra K @KMJtravels @BTSMchat T2: Definitely changed, a much bigger load for the hubby to carry especially with the kid & me not driving. Have to make special effort for date nights cause we’re both just exhausted all the time... #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T2: sadly I have seen marriages dissolve through a #gbm journey. Drs must address not just pt but their “circles” too #btsm |
| Liz Salmi @TheLizArmy So many layers in this tweet... A GBM care partner helping a widowed GBM care partner... while caring for her husband with GBM... This is what the #BTSM community is all about. ❤️ |
| Lisa O'Leary @lisaoleary524 T3 Most challenging dealing with personality changes and violent mood swings. I was afraid to ask for help for fear he would be placed in a facility. His family was spiteful and was much more harmful than helpful. Feeling alone. Repercussions after he died incl PTSD dx. #BTSM |
| Hedy Wald @hedy_wald yes but "village" out there w family7friends can suffer frm compassion fatigue. #BTSM Not uncommon -meals/attn in the beginning but not so much over time, ppl go on w their lives it's par for the course¬ many can be consistently supportive, it's tough emotionally 4 them2 |
| Lisa O'Leary @lisaoleary524 T3 cont. Most rewarding was knowing how much he loved and appreciated me even when he could not express it in words. Finding out what I was capable of enduring. Getting married 48 days before he died. Caring for him was the honor of my life. #BTSM |
| Malnati Brain Tumor Institute at Northwestern @BrainTumorInst RT @Ashleysumrallmd: @BTSMchat T2: @BTSMchat T2: sadly I have seen marriages dissolve through a #gbm journey. Drs must address not just pt but their “circles” too #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor Oops #BTSM |
| Meera agar @meera_agar RT @Tsarmstrong01: What exactly is IMRT-intensity modulated immunotherapy takes one mean into lots of smaller beams allowing avoidance of critical structures -Dr Sulman #COGNO2018 #BTSM https://t.co/mYijP6HPAw |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat It is sometimes very difficult for pts & caregivers to go ahead and make the big decisions early. They feel like they are “giving up.” Truthfully, it is one of the most important things they can do. Do it early! #btsm |
| Kendra K @KMJtravels @BTSMchat T2: it was hard to accept help at first, but now I have no problem ordering folks around 🤪 #btsm |
| Erica Robinson @eleighrobs @TheLizArmy Exactly. The community that has become a family, that no one expects to ever join. Best. People. In. The. World. ❤️ #BTSM |
| Johnny @Johnny70250027 @sean_sachdev Dr, can I be direct? Is their any roadblocks to saving tumors frozen, for DCVax, either from a science or politics point of view? Can you project downstream based on mesenchymal gene expression survival data with DCVax-L (n=44)? Can you add your persepctive? #btsm |
| Lisa O'Leary @lisaoleary524 THIS!!! Absolutely @Ashleysumrallmd this was the biggest reason we didn't have some of the hardest conversations. Made it so much harder to move forward when he was gone, not being sure of what he would have wanted. #BTSM |
| Matt Cotcher @MLCotcher @adamhayden The problem I found with taking on the role as Dad's care partner is that the cloak can never be taken off once it's donned. #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T3/ The most challenging thing for me as a PT was my inability to mother my children and the guilt that came from watching them grow up without 'me' #BTSM |
| Liz Cramer @oncELLEogy Most people don’t understand there is no cure or how to talk about it or help those diagnoses carry on with their new normal. Caregivers/care partners are very, very special people in an impossible situation. I imagine community like #btsm becomes a true support outlet. |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @lisaoleary524 @BTSMchat So hard @lisaoleary524. Long before I was a neuro-onc, a dear friend’s husband divorced her. We later found he had a frontal #gbm. They never reconciled & it still haunts her. I always remind fams that “it is the dz.” Doesn’t take away the hurt though #btsm |
| RaeLynne @TheRaeLynne @BTSMchat Most challenging: all of my time spent in care partner role, managing tough tasks, making hard decisions. Most rewarding: all of my time spent doing these things with and for the love of my life. #BTSM |
| Liz Cramer @oncELLEogy RT @MLCotcher: @adamhayden The problem I found with taking on the role as Dad's care partner is that the cloak can never be taken off once it's donned. #BTSM |
| Liz Salmi @TheLizArmy @Ashleysumrallmd @BTSMchat Hey! Glad you popped in! #btsm |
| Hedy Wald @hedy_wald TY @Thelizarmy I'm running2my computer&back2him now2help #btsm Most challenging aspect? it's been 6.5 years, incredible, every day its own resilience challenge&every day wondering how can this be? We need more research& societal support4 the 24/7 caregiving we must do #btsm #GBM |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T3/ The most rewarding? Part was watching my children become compassionate resilient young people. #BTSM |
| KateWhy @KattyBatty1 @BTSMchat T3/#BTSM. Parent. The big challenge is to not project my worries to my teen but to let him be a teen. Although, I guess that's every parent's challenge, isn't it. |
 | Prof. Leonie Quinn @Quinn_Lab RT @Tsarmstrong01: What exactly is IMRT-intensity modulated immunotherapy takes one mean into lots of smaller beams allowing avoidance of critical structures -Dr Sulman #COGNO2018 #BTSM https://t.co/mYijP6HPAw |
| Liz Salmi @TheLizArmy RT @Ashleysumrallmd: @BTSMchat It is sometimes very difficult for pts & caregivers to go ahead and make the big decisions early. They feel like they are “giving up.” Truthfully, it is one of the most important things they can do. Do it early! #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat @hedy_wald Many times people don’t understand that the tumor is still there. Especially with grade II. People just can’t grasp the fact that someone who looks so healthy could be slowly dying. #btsm |
| Liz Cramer @oncELLEogy @adamhayden What do you think would help other folks who are having trouble getting to a place where they can have that conversation? #btsm |
 | I Live Now Rachel 💎 @KickBrainTumors We’re in this fight together #BrainTumorAwareness 🧠 #BTSM |
| courtney @courtneybenisch @BTSMchat The most challenging was watching the disease take over a very important person in my life. Also seeing how many others are effected by this. #BTSM |
| Katie Mang @KatieMang T3 still new to this, but most challenging as a carepartner is balancing the logistics (kids, my work, meds, therapy+new roles finances & house) with finding time to be compassionate and "just there"; rewarding is deeper communication. Proud of myself for taking it all on. #btsm |
| Liz Salmi @TheLizArmy @adamhayden @KMJtravels @BTSMchat @mrsadamhayden Having NO DRIVER'S LICENSE SUCKS! Loss of independence. Not being able to get to a job. I was w/o my license for 11 months back in 2008-2009. This was before @lyft & @Uber. I got myself special bus pass and would TAKE THE BUS to the cancer support group. #memories #btsm |
| Lisa O'Leary @lisaoleary524 @KatieMang You should be Katie! You're amazing. #BTSM |
| Hedy Wald @hedy_wald U R a beautiful soul. @lisaoleary524 What a blessing he had. #btsm For many it is not straightforwrd, there R so many mixed emotions, anger, anxiety, love,, honor ,resentment, grief, gratitude for whatever time we have ,emotions all bundled up |
| Erica Robinson @eleighrobs @adamhayden That had to give you comfort and an opportunity to see how others see your wife! #BTSM |
| RaeLynne @TheRaeLynne @BTSMchat A real life lesson. It was hard to let people help, but I learned it's OK. And they're still helping me - I recently decided to sell my house and I'm moving back to my home state of Michigan - they're still in this with me & helped me pack all weekend! #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat ... #btsm 1/1 One of my biggest pet peeves is that so many houses don’t have a bedroom or full bathroom downstairs!! This impacts so many fams, especially brain tumor pts. People feel so uncomfortable living in a dining room. (I have a disabled daughter & we have dealt with this) |
| Lisa O'Leary @lisaoleary524 T4 Very ltd support during disease course. No resources offered to me at hospitals (5 mos inpatient) or as outpt. Started counseling 2 wks before he died and cont for over 2 yrs-saved my life. Family and friends wanted to help but were afraid to intrude and of his behavior. #BTSM |
| Hedy Wald @hedy_wald Absolutely they cannot wrap their head around the horror. IT COULD HAPPEN TO YOU #btsm @Ashleysumrallmd |
| Liz Salmi @TheLizArmy @Ashleysumrallmd @lisaoleary524 @BTSMchat I learned my dad had GBM in 2015. He was a self-centered asshole my entire life and no one in the family would talk to him. I now wonder how long he had that frontal lobe mass, and was it effecting him my entire life??? #BTSM #noanswers |
| Erica Robinson @eleighrobs @Ashleysumrallmd @BTSMchat @hedy_wald There's no such thing as a good brain tumor. #BTSM |
| Lisa O'Leary @lisaoleary524 T4 cont. Need to offer assistance with finances (disability, insurance issues, etc-we lost life insurance benefits entirely due to paperwork error); counseling and respite care for in-home care partners; connect care partners, past and present, so they don’t feel alone #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat 2/2 It is heartbreaking to watch a family adjust to a diagnosis of brain tumor and try to move to another home. It is layer upon layer of life’s most stressful events #btsm |
| Liz Cramer @oncELLEogy @Ashleysumrallmd @BTSMchat Learned this with my grandmother! When we found out she was sleeping on the couch the family descended to fix it. #btsm |
| courtney @courtneybenisch @adamhayden @BTSMchat I am so sorry to hear about your diagnosis. You can only prepare so much but just spend every second you can with the ones you love #btsm |
| Liz Cramer @oncELLEogy RT @Ashleysumrallmd: @BTSMchat ... #btsm 1/1 One of my biggest pet peeves is that so many houses don’t have a bedroom or full bathroom downstairs!! This impacts so many fams, especially brain tumor pts. People feel so uncomfortable living in a dining room. (I have a disabled daughter & we have dealt with this) |
 | Chris Barnes PT, PhD @CBarnesPT Just lurking tonight - admiring this conversation #btsm |
| courtney @courtneybenisch @BTSMchat Working for a non profit, like @HeadfortheCure, made me realize how few there are out there for brain cancer patients and care partners! #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T3 // The most challenging part of my position as the patient (i.e., recipient of the care) is feeling guilty to put my partner through pain/anxiety. That he worries for me all the time. I feel like it has created an unequal balance. #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat Psychosocial support for care partners and family is essential. It is needed at different times and for different issues but is absolutely necessary. #BTSM Also #COGNO18 session 6 tomorrow #futuretweets |
| Lisa O'Leary @lisaoleary524 @Ashleysumrallmd @BTSMchat We did this, too. We lived in a second floor apartment when Patrick was dx. Had to move to 1st floor bc it was not accessible. Did this the day he was released from the hospital after months as inpt. Loads of help but a logistical nightmare. #BTSM |
| Sean Sachdev, MD @SeanSachdevMD @KatieMang As you should be. hang in there. Please use this community and let physician/care team/social worker also help hopefully guide you to some resources. We can help arrange tx times, appts, write letters..etc. Likely not enough, but always there for you #btsm |
| Erica Robinson @eleighrobs @Ashleysumrallmd @BTSMchat @hedy_wald Just to clarify, I meant I agree 100%. Sometimes people see the patient looking good, or hear "not malignant" or "Grade 2" and think the patient can't have other symptoms, or after-effects of a brain tumor diagnosis, surgery, radiation. #BTSM |
| Liz Salmi @TheLizArmy ⬇️ THIS IS MY LIFE, thank you for acknowledging it @Ashleysumrallmd. #BTSM Also my life, "So grateful for all the time I have to be proactive about my diagnosis." Will not take ANY of this for granted. |
| Hedy Wald @hedy_wald U got that straight @eleighrobs #BTSM Sometimes I think cynically Try one day of my life (or my husband's) - THINK YOU'RE HAVING A BAD DAY? kinda thing but I know there is suffering in this world, not just us but need >research2fight this dreaded disease |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat I will add (as a +) sometimes you see a relationship that is so pure & filled with love. As the dr, you have a unique window to view that bond grow. It restores your faith in marriage, relationships, & people. I have seen selfless 💗 that brings me to tears over & over #btsm |
 | Gavin P. Jones, MD @GavinPJonesMD RT @EricLehrer: Our review on immune checkpoint inhibitors and stereotactic radiosurgery in brain metastases just published in @IJMS_MDPI great collaboration with @DanTrifMD @NicholasZaorsky #Immunotherapy #btsm #radonc https://t.co/YCELI3LWNn https://t.co/xHgGuOta1Y |
| Liz Salmi @TheLizArmy @Ashleysumrallmd @BTSMchat I actually sold my house and moved for this very reason... #BTSM |
| Lisa O'Leary @lisaoleary524 @Ashleysumrallmd @BTSMchat I received an e-mail from one of Patrick's neuro unit nurses three yrs after he died. She found me through social media. Wrote the most beautiful words about how our love and my care for him impacted everyone and that they still talk about us. Incredible. #BTSM |
| Matt Cotcher @MLCotcher T4: Clinics, doctors, etc (the entire medical care team) need to recognize the critical difference between their expertise and the real world info that a care partner needs. Care partners should be told what to expect by other care partners, not a social worker. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat #btsm 1/2 The amount of help for caregivers is pitiful. In some communities, #pallmed is a good adjunct. But there is NO respite. And best caregivers do not have the time or money to seek out their own medical care, psychotherapy, or even a weekend away for sleep |
| Hedy Wald @hedy_wald absolutely understd @eleighrobs We need2think deeply as a society abt our obligation as a society to "survivors" or those trying to live w this thing - need recognition of assocd symptoms&effects of treatment which can be brutal, it's not just abt being alive it's abt QOL #btsm |
| courtney @courtneybenisch @adamhayden @BTSMchat Your courageousness to not only fight this disease and fight for it is amazing. #btsm |
| Manmeet Ahluwalia, MD, MBA, FASCO @BrainTumorDoc @hedy_wald Agree- people who start with a stronger support group do better. The disease does take its toll on the patient and the family. #btsm |
| Lisa O'Leary @lisaoleary524 @adamhayden @mrsadamhayden I had to go on medication to control anxiety 3 mos into Patrick's care. I could not have functioned without it. Took many yrs after to be able to stop taking it. #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat 2/2 Even harder, once the loved one passes away, many of these caregivers are completely lost. They don’t know what to do with their lives or what to tell their kids. This is an area that has been on my 💗 lately. I’d love to start a support group w/ widows. Am trying!! #btsm |
| Hedy Wald @hedy_wald TY @elisabethcramer I tend to not use the term "new normal" as nothing is normal about this & never can fully adjust to "impossible situation" TY for such kind words #btsm |
| Lisa O'Leary @lisaoleary524 Whew! I didn't break the Twitter! :) Love to all of you, thank you for sharing your experience - and if I can help you in any way with my own, don't hesitate to reach out. #BTSM |
| Liz Salmi @TheLizArmy @Ashleysumrallmd @BTSMchat Could be #BTSMwidows? #BTSM |
| Lisa O'Leary @lisaoleary524 Also... I write a lot about my experience as a care partner at https://t.co/PkInaSofM1 if you need some solidarity! #BTSM |
| Katie Mang @KatieMang Thank you so much for providing this #BTSM chat!! It's amazing to have connections and support with others in this journey and a TIME and PLACE that I can actually join!! |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @lisaoleary524 @BTSMchat It definitely happens. We can be in the middle of clinic and something will trigger a memory of a special family. It never fails because we all get tears!! I always tell my team that if we are doing this job the right way, it should hurt. Form bonds. 💗 #btsm |
| Lisa O'Leary @lisaoleary524 @TheLizArmy @Ashleysumrallmd @BTSMchat Please let me know if I can help!! #BTSM |
| Hedy Wald @hedy_wald many caregivers/care partners are fatigued & isolated as life moves on for friends & family. There can be emotional and physical health implications of caregiving -the Alzheimers community has advocated, it is time4the brain cancer community2step up2the plate on this #btsm |
| Lisa O'Leary @lisaoleary524 @hedy_wald Exactly why I'm here. I am with you 100%. #BTSM |
| Lisa O'Leary @lisaoleary524 @adamhayden I love you my friend!! #BTSM |
| Erica Robinson @eleighrobs @Ashleysumrallmd @lisaoleary524 @TheLizArmy @BTSMchat @SNO @RachBackS When you read this, you can laugh at that one! #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat @lisaoleary524 @TheLizArmy @CBlotner_ @adamhayden @Sabine_NJ @JeremyPivor Thanks so much! #BTSM |
| RaeLynne @TheRaeLynne @lisaoleary524 @TheLizArmy @Ashleysumrallmd @BTSMchat Same - I'll help any way I can. It's not an expertise anyone wishes to have, but how could I not use it to help someone else? #BTSM |
| Liz Cramer @oncELLEogy @hedy_wald Well that’s the truth- perhaps new reality is a better way to put it. But you know what I meant. Much ❤️. Brain tumors steal from so many. #btsm |
 | Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @Ashleysumrallmd: @BTSMchat T2: @BTSMchat T2: sadly I have seen marriages dissolve through a #gbm journey. Drs must address not just pt but their “circles” too #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @Ailuj_Nostrebor: @BTSMchat T3/ The most challenging thing for me as a PT was my inability to mother my children and the guilt that came from watching them grow up without 'me' #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @adamhayden @mrsadamhayden Amen & couldn’t agree more. Sometimes fams get mad at me when I start probing about how the caregivers are caring for themselves. It matters though!!! (I get it.. hubs & I care for our disabled dtr) #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @Ashleysumrallmd: @BTSMchat It is sometimes very difficult for pts & caregivers to go ahead and make the big decisions early. They feel like they are “giving up.” Truthfully, it is one of the most important things they can do. Do it early! #btsm |
#BTSM content from Twitter.