Home to all #BTSM (Brain Tumor Social Media) Chat transcripts
August 2016 #BTSM Chat – Brain Surgery: Survivor Tales
Out of everyone who took the #BTSM Community survey, 86% responded that you had a craniotomy as part of your or a loved one’s treatment.
For those of you who have had a craniotomy, tonight’s chat may trigger memories that you may not expect. The #btsm community completely understands if you need to take a break or leave at any time. For those who haven’t had a craniotomy, we’ve got a chat full of experts here! Feel free to sprinkle your questions in throughout.
T1: How long ago was your craniotomy? Was it awake or asleep?
- T1b: What do you remember leading up to that moment of going back into the OR, or during surgery?
T2: Is there anything that you wish you had been told about pre-craniotomy that you weren’t, whether physical or emotional to prepare?
T3: If you could give advice to yourself or another person who was about to or just had a craniotomy, what would it be?
- T3b: What about the family members or partner of someone in the same situation?
July 2016 #BTSM Chat – Cancer Moonshot Initiative
This month the #bcsm #lcsm #hcchat and #btsm communities teamed up over the course of a week to cover chats related to the National Cancer Moonshot Initiative. All chats shared a more in-depth blog post about it, which you can read here.
T1: Why should all #cancer communities care about the Moonshot initiative?
- T1, part 2: Who participated in other Moonshot chats this last week? What was covered?
- T1, part 3: Out of curiosity: Did anyone in the chat tonight attend the Cancer Moonshot Summit in person?
T2: How might we improve dissemination of info about new approaches for cancer clinical trials & data sharing?
T3: What do you HOPE will be accomplished as part of the Moonshot?
T4: How can we continue supporting the Cancer Moonshot initiative?
June 2016 #BTSM Chat – new WHO Classification of CNS tumors & what this means FOR YOU
This month’s chat format was a bit different than usual. We opened up the floor for Q&A with Ann Kingston, PhD, assistant director of program initiatives with @NBTStweets. We chatted about the @WHO’s newly released Classification of Tumors of the CNS.
NBTS shared a few great links with us:
May 2016 #BTSM Chat – Brain Tumor ACTION Month
T1) So the topics I want to discuss tonight are #BTAM and why we’re calling it Brain Tumor ACTION month and how you take action in your own personal struggle with the disease and what resources you turn to
T2) What we’re looking to do is collect your advice, lifestyle changes, and actions you take that we’ll create into info snaps for #BTAM
- We actually have actions you guys can take this month with us!
- For example, you can help our advocacy effort from home by contacting your elected official about these items.
So please, get on board with with us and other brain tumor community folks this month.
April 2016 #BTSM Chat – Online support communities & reaching newly diagnosed patients
T1 More & more people are turning to the Internet for support. What are some of the top online support networks you have found?
T2 How long did you wait to connect w/a support group? Or, why haven’t you?
T3 Why do you think ppl w/aggressive brain tumors are less likely to participate in online support groups?
- T3b How do you think we can reach out & include more people w/aggressive brain cancers/tumors, such as glioblastoma?
March 2016 #BTSM Chat – Life After Craniotomy
T1: What was life like before your or your loved one’s craniotomy?
T2: What changes have you noticed since your craniotomy? Would you call these changes immediate, or late effects?
T3: What have you done to adjust to those changes? What tips would you share? What do you still need help with?
February 2016 #BTSM Chat – Community Survey
T1: How have #BTSM Chats changed over the course of the past nearly four years?
T2: The more we know about you, the better we can facilitate the chat. What does your ideal BTSM Chat consist of?
T3: What keeps you coming back to this chat each month?
We hope the brain tumor community will share the survey with your brain tumor connections (which may include other patients and caregivers) in order to collect a broad response. Your participation in this survey is voluntary. General survey results may be shared in a future blog post, however, answers will not be associated with individuals.
The #BTSM community survey is now LIVE and will remain open through Sunday, March 6th: http://goo.gl/forms/yo9lYznT
January 2016 #BTSM Chat
TAKE NOTE: #btsm will NOT meet in the month of January 2016. We usually take this month off, though you are welcome to rally regardless!
December #BTSM Chat
This month we are talking about digital communication and health care instructions.
T1a: Why is it hard to remember the information we are told during a doctor’s appointment?
- T1 recap: It’s hard to remember the appointment because emotions are high, doc could be rushed, new lingo to absorb, possible memory issues
T1b: How do you keep track of healthcare information you receive during appointments?
- T1b recap: Bring a notepad with pre-written questions, a listening partner (i.e., another person), and perhaps a recording device!
The next set of Qs are based on the article: “What patients need to remember after leaving the hospital” http://t.co/acAD2BDIyn
T2a: The article states patients “immediately” forget 40-80% of what the doctor told them. Does this happen to you?
T3a: How will the use of technology depersonalize or improve patient-centered care?
- T3a recap: Technology is great! But patients still need to be heard, and want docs to look them in the eye
T3b: Predict the future! How will technology transform healthcare communication in the future?
November #BTSM Chat – Brain Radiation Basics
T1: When does a person with a brain tumor (or metastasis) need brain radiation? When is it a good option and when is it not?
T2a: How should one prepare themselves for radiation to the brain? (Radiation survivors: Share your tips!)
T2b: @sabinbmotwanimd: Is brain radiation different for a person with a primary brain tumor versus secondary brain tumor (met)?
T3: @sabinbmotwanimd How is brain radiation “prescribed?” How do you determine how much/often a patient receives treatment?
T4: @sabinbmotwanimd What are the short- & long-term effects brain radiation survivors should watch for?
October #BTSM Chat – Canadian Brain Tumor Awareness Month
If you didn’t know, October is brain tumour awareness month in Canada. In the U.S. it is in May. Tonight we are excited to have @BrainTumourFdn joining us as the guest moderator in celebration of brain tumour awareness month.
T1: What does #BTAM in Canada mean to you?
T3: Should Canada consider aligning #BTAM in October with the US month in May? Would that be a start towards world-wide alignment?
September #BTSM Chat – What do you wish you knew BEFORE surgery?
Tonight – we’re talking about surgery with a focus on what you wish you knew BEFORE surgery.
T1: What resources/books did you find helpful before and after surgery/biopsy?
T2: What surprised you most about brain surgery (in a positive way)?
T3: Have you ever volunteered to share your brain surgery/tumor experience through a patient support program (like @ImermanAngels)?
August #BTSM Chat – Navigating Family & Caregiver Spaces
This month’s topic is how to navigate family & caregivers with special guest moderator and survivor, Samira. Sharing honestly and being vulnerable is a great way to really help caregivers be advocates/to enable them to honor your wishes.
T1: What are the biggest challenges you face when trying to communicate with families about your condition/needs?
T1: And for caregivers, what are the challenges on your end when trying to communicate about a loved one’s health?
T2: How can your caregivers/family members/support system best advocate for you and support you? aka – what do you wish they would do?
- Recap: People wish that others would stop telling them “not to worry so much” and just “get back to their life” – from doctors, too. It’s important for caregivers to realize that being supportive doesn’t have to mean being physically present. People don’t have to apologize for not knowing what to say, illness is complicated for all of us.
T3: What are some ways that your caregivers have supported you/advocated 4 you in positive ways? What can we learn from those times?
July #BTSM Chat – Storytelling
T1: What advice would you give to a person diagnosed with a brain tumor today (malignant or otherwise)?
T2: How important is it for someone with a brain tumor to meet others with brain tumors?
T3: What other communities exist you think the #BTSM community should know about?
T4: When is your next brain scan/MRI scheduled, and how are you preparing yourself in anticipation of scanxiety?
June #BTSM Chat – Survivorship
T1: Life before your brain tumor, and Life after or living with a brain tumor. What have you held onto, refused to let go?
T2: Was there a particular moment or point in time that you can vividly recall thinking “I’m moving on” or “I’m letting this go”?
- How long do you wait to tell NEW people in your life you have/had a brain tumor/cancer?
T3: Do you think a person with a brain tumor can truly be a “survivor?” Why or why not?
May #BTSM Chat – Brain Tumor Awareness Month
T1: May is Brain Tumor Awareness Month. How do we get the word out, and what actions we can we take?
T2: What are people already doing to raise awareness?
T3: What are some examples of awareness campaigns that have been impactful, that we could learn from?
T4: What can people do to raise awareness?
T5: How can people engage with NBTS on an awareness campaign?
With #itsyourfight, NBTS is looking for the information you learned the hard way, and that you can share.
April #BTSM Chat – Exercise and Physical Activity
This week we were lucky to have @mAssKicker1, brain tumor survivor, physical therapist, and founder of the mAssKickers Foundation join us as a guest moderator to share his knowledge about exercise and physical activity.
T1: What kind of physical activity/exercises do you prefer? What do you do and where do you do it?
- What people with brain tumors do for exercise: exercise bike, regular bike, yoga, ballet, jogging, swimming, pull-ups, iso-metrics
T2: How/when did you start exercising? or what prevents you from exercising
- Recurring themes: Starting movement after surgery is hard, but necessary. Must. Battle. Fatique.
T3: What have your doctors told you about exercise and physical activity after/during treatment?
- Trends: Nearly everyone has balance issues, and 1/3 of us are not supposed to swim alone. Sounds about right.
March #BTSM Chat – Nutrition
Our special guest for this chat was Sharon Day (@SharonDayCTCA), National Director of Nutrition & Director of Quality of Life, for Cancer Treatment Center of America’s Western Regional Medical Center.
T1: A question I get a lot is what exactly are healthy foods? Especially in terms of cancer prevention & survivorship
- A1: Across the board, I recommend a plant-based diet. There have been many studies showing its value & it’s just a healthy way to eat
- A1: The majority of the foods you should eat are fruits, veggies and nuts, paired with lean sources of protein and whole grains.
- A1: Here is a really good sample menu of what a plant-based diet looks like
T2: I also saw a lot of people asked, “What should you eat during treatment?”
- A2: Lean protein and Omega 3 are good to have for muscle maintenance, which can often be affected during treatment
- If you are looking for nutrition help, I recommend looking here
- We have a whole list of foods – and other things- we recommend to help with treatment side effects
T3: Another thing a lot of people ask is what exactly is a role of a nutritionist in cancer care?
- We work with the doctors to review labs, make sure people aren’t malnourished so they can go through treatment & help with side effects of meds
- We help people maintain a healthy diet as survivors. During treatment they can’t eat so we help reestablish normal, healthy eating patterns
February 2015 #BTSM Chat – Caregiving
Our special guest for this chat was seasoned caregiver, Lynn Greenblatt (@CaregivingCafe)
T 1: Caregiving itself – supporting the caree in every way: medical, paperwork, emotional, daily living, etc.
- How do you manage your caregiving duties?
- What steps do you take to make the best of Drs’ appointments?
- Can you share some tips to find the right insurance policy or address a coverage issue?
T 2: Self-care for the Caregiver – physical /emotional wellness, staying social, coping strategies
- How do you make sure that you stay well so you can continue to be a successful family caregiver?
- How do you cope with the difficult situations in caregiving?
- What changes can you make to add self-care, socializing to your day?
T 3: Family / other responsibilities – juggling all other tasks, taking care of other family members, etc.
- What strategies have worked for you when juggling other family roles, employment & responsibilities?
- What resources do you use or would like to have to better manage all of your duties?
- How do / could you involve others in family tasks?
- What type of caregiver or patient support would you like to see for employees?
December #BTSM Chat – Brain Tumors & Mental Health
Dr. Ann Becker-Schutte, a Kansas City psychologist and #wholepersonhealthcare advocate, joined us as our guest moderator for the evening!
T1: Brain tumors lead to a complex range of emotions for most folks. What surprised you the most?
T2: Sometimes it can feel as though family or friends want/need you to feel better than you do. How do you cope with that?
T3: What are the most important things to know/remember about coping during treatment and beyond?
ANNOUNCEMENT #1: There is no official, organized tweet chat for January, but everyone is welcome to sign in and chat on January 4, 2015.
ANNOUNCEMENT #2: We will be back on Sunday, February 8, 2015, with the next “officially moderated” chat.
November #BTSM Chat – Palliative Care
Advocate @rfberry from #HPM (Hospice & Palliative Medicine) joined us for this month’s discussion.
T1: What is your understanding of #palliative care?
T2: How do you feel reflecting on Brittany Maynard’s end of life decisions? http://ow.ly/DHVdX
- Palliative medicine = support for those with serious illness, Euthanasia = intentional active ending of life
T3: What are you hoping to learn more about w/palliative care? What about hospice (a sub-component of palliative care)?
In summary: Palliative care is a medical specialty for anyone with a serious illness. It can be provided along side other curative treatments. Palliative care is often known for comfort focused care. The clinicians also focus on quality of life being at the center of care. To “palliate” is to relieve pain or alleviate a problem–it’s not giving up!
NEXT #BTSM Tweet chat is on Sunday, 12/7 with guest @DrBeckerSchutte
October #BTSM Chat – Planning for 2015
T1: The #BTSM moderators are preparing for 2015. What topics would you like to see us cover next year?
T2: What special guest moderators would you like to have join us in 2015? (No name is too big!)
T3: Do you think #btsm should get involved in “awareness”-type campaigns, and if so, what opportunities should we be part of?
- Interesting fact: May is brain tumor awareness month in the US. October is brain tumor awareness month in Canada.
September #BTSM Chat – Brain Tumors In The Media
How are brain tumors portrayed in the media, is the portrayal accurate, and can it inspire activism?
T1: | TELEVISION & MOVIES | What stereotypes have you seen on television and in movies about people with brain tumors?
- TV: @scottmfoster plays a character in his 20s with an Astrocytoma named Leo in “Chasing Life” on ABC Family
- What other cancer survivors have to say about the show via @IHadCancer
- The series Black Box was about a neuroscientist and it discussed brain tumors
- An episode of The Office, which Liz once wrote about here
- Movies: Phenomenon with John Travolta and The Fountain with Hugh Jackman, which Liz also wrote about here
T2: CELEBRITY COVERAGE | A number of well-known people have been diagnosed w/brain tumors. What has the public learned about their experience?
- There’s @CharlesTrippy from @WeTheKings who filmed his awake brain surgery and put it up on YouTube
T3: ACTIVISM | How has television, film, and the diagnosis of high-profile people sparked activism among, or for, the BT community?
- Sheryl Crow’s meningioma was a teaching moment, but she shied away (her choice, though)
- @CharlesTrippy donated $70,000 to @theABTA and @NBTSTweets! #StandUpToCancer took place this weekend. Celebrities flocked.T3
Part 2: How is brain cancer death portrayed in movies, is it realistic, and can it inspire activism?
BONUS Topic: Share your favorite shows/films/books about cancer and other serious illnesses. What should we be watching/reading?
August #BTSM Chat – Survivorship Plans
T1: Do you consider yourself or your friend/family member a survivor at this point?
- How do you define survivor?
T2: How many of you talked with your doctor to determine a survivorship plan after diagnosis/treatment?
- Did you know that there’s such a thing as a SURVIVORSHIP PLAN?
- What should a brain tumor survivorship plan include?
T3: What kind of medical related things do you want survivors to know to follow up with after treatment has ended?
- What are some non-medical related things that you think brain tumor survivors need TO DO after treatment ends?
T4 (bonus round): What ideas can you contribute to a survivorship plan for your specific tumor type/locations?
July #BTSM Chat – Addressing Patient Symptoms and Clinical Trials with The National Brain Tumor Society
NBTS made a really cool storyboard to recap highlights of the chat
- Q1: [for NBTS] What does the term “clinical trial endpoints” mean?
– A1: “Endpoints are outcome measures that allow us to decide whether a treatment provides clinical benefit” – NBTS
- Q2 [for everyone]: What are the top symptoms that you think should be addressed in brain tumor drug development?
- Q3: Have you (or your loved one) taken part in a clinical trial–if not, what has prevented you from taking part in a clinical trial?
- Q4: If you DID participate in a brain tumor clinical trial, how did you find out about it?
- Q5: If you had the opportunity to help give input on the development of brain tumor clinical trials, would that be of interest?
June #BTSM Chat – Dr. Michael McDowell, Guest Moderator
- T1: Where have we failed you?
– Do people feel that the short amount of contact you may have had as a failure?
- T2: How was the outcome of your surgery compared to the expectation?
- T3: What should I tell my patients to expect? (this)
May #BTSM Chat – Brain Tumor Awareness Month
May’s #BTSM chat focused on events and campaigns that are taking place this month, Brain Tumor Awareness Month. We discussed ways to get involved with The National Brain Tumor Society (NBTS) throughout the chat this month instead of using specific topics.
April #BTSM Chat – Compiling Online Best Practices for Physicians
- T1: What advice would you give a doctor about engaging with patients online?
- T2: HOW can physicians use email, Twitter, Facebook, and video chats to interact with patients, especially those who live far away?
- T3: What types of doctor blogs, tips for patients, etc. would you like to see online as patients/caregivers/friends/family, and why?
March #BTSM Chat – Traveling
- T1: What type of accommodations do you request while traveling or once you arrive at your destination?
– T1 continued: How have people typically responded to your or a loved one’s accommodations?
- T2: Have you run into any unforeseen complications due to medical conditions while traveling? If so, how did you handle them?
- T3: How have your experiences been when forced to cancel due to medical issues?
February #BTSM Chat – Scanxiety
- T1: How does your scanxiety manifest?
– T1 continued: Has your scanxiety always presented in the same fashion, or has it changed over time?
- T2: What helps distract you leading up to scans, and waiting to hear back about results?
January 2014 #BTSM Chat – Helping Ourselves Improve
T1: What would you like to have change in your treatment, recovery, or grieving this year? How can you help yourself make that change?
T2: What would you most like to discus during #btsm chats in 2014?
December #BTSM Chat – Disclosure
T1: How have you disclosed your or another’s experience with a brain tumor to friends, extended/new family, in the workplace etc.?
T2: How has your disclosure method and comfort level in sharing information changed over time?
T3: How do you feel after disclosing information? What makes you feel more or less empowered?
November 2013 #BTSM Chat – Asking For Help
- T1: What challenges do you face related to your brain tumor experience? How do you ask for help regarding these challenges? #btsm
– T1 continued: Friends, family members, and everyone else involved with patient care face challenges. Is it difficult for you to ask for help?
- T2: Who do you ask for help, and why?
- T3: What would you suggest people do to help a patient/friend/family member in the midst of or recovering from treatment of any kind?