February 9, 2022 Finding Emotional Support

We were so happy to have twenty-six participants join us for tonight's #gyncsm chat on Finding Emotional Support. See the transcript here and other analytics here. 

Here are some highlights from our chat. Note that the highlights from Question 7 include links to emotional health resources. 

T1: What are some of the emotions that come with a cancer-related diagnosis? How have yours changed over time?

• T1 Mine ran the gamut – shock, fear, sadness, anger, grief, and also gratitude for living close to an NCI comprehensive Cancer Center. 
• T1. I don’t know why I was so surprised now looking back! Fear has passed as well
• T1: Is overwhelmed an emotion? When I found out I had the genetic mutation behind all the cancer in the family, it felt good to know but also terrible. I now feel like a fell into a no-mans-land in healthcare.
• I think guilt is there too. What could I have done differently? What will this mean for my kids?

T2: When you have needed emotional support, who did you reach out to? Was your healthcare team involved?

• T2. Family, friends, fellow advocates, 100% healthcare team
• T2: I ended up not reaching out a lot. Part who I am. Part because my best friend was in end stage MBC. My husband was my rock, but I know he was overwhelmed, too 
• T2: blessed to have a friend introduce me to @stepsthrough https://stepsthrough.org/ They offer FREE counseling for OC patients and caregivers
• When I was first dx Family was the first support then I reach out to @CancerHopeNet and spoke one-on-one volunteer after seeing a flyer in my cancer ctr. Support groups at @RutgersCancer & @Cr4Hope helped me through the years. 
• We sometime stigmatized patients (especially women) for having mental health need including self-censorship. Your care team should be there to help you find the support you need.
•  I sought out a psychotherapist who specialized in people with #hereditarycancersyndromes. I believe my genetic counselor referred her.

T3: What do you see as some of the impacts that the global pandemic is having on the emotional needs of those facing a cancer-related diagnosis? How has the pandemic impacted your need for emotional support?

• T3: Can't image how hard it must be to go through treatment now during the pandemic, being immunosuppressed, having visitor restrictions. I miss having my husband with me during routine followups
• T3: Cancer is super isolating to begin with! I guess I think every emotion has got to be more intense when people are already stressed and stretched emotionally.
• Agree. Also, people are afraid of being in groups which make it more isolating when seeking help 

T4: Based on your experience and perspective, what types of emotional support do patients need most and what areas do you see as lacking adequate resources?

• T4. It’s comforting to talk to survivors of your specific cancer. They totally understand what you are going through & are a good resource for hope & info
• T4: As someone mentioned, it is important that doctors make referrals and be the one to bring it up. Open the door for that conversation. I see the “we saved your life, now you are on your own” kind of experience changing but a ways to go re: whole-person healthcare
• T4 For me I needed more help after I finished treatment handling the emotions - not seeing my gyn onc as frequently I admit freaked me out a bit. I needed a way to handle the fear of recurrence.
• T4: Yes, this right here. My cancer center was great that first year post treatment, with referral to therapist. Now I sense they are impatient with me.
• T4. #gyncsm I think many woman do seek out some sort of support -- it's the men who have #hereditarycancersyndromes that concern me the most. They just don't want to talk about it or deal with it. #Lynchsyndrome
• 4. Support at different stages - early dx, active treatment, survivorship - matters. Long-term survivors like @womenofteal provide such comfort to women facing challenges when "normal life" is actually "new normal."

 

T5: What have you found to be most helpful in providing emotional support? In-person or virtual support groups, other online platforms, one-on-one peer support, friends/family, counseling, other?

• T5: As an introvert, I think I could definitely handle a Zoom meeting better than in-person. Nice that the options are increasing. 
• T5: Reading books about #Hereditarycancer and connecting on Twitter with other advocates like @BRCAresponder has been super helpful to me. Meeting someone who truly understands what you're feeling and experiencing makes all the difference in the world. You feel less alone.
• ...it takes a village of support options to provide emotional support when, where, and in the way that's best for each individual. 
• I prefer online platforms like @smart_patients and @FacingOurRisk discussion boards. I do better in written formats like Twitter :)
• There is no one size fits all. This is why it is so important to have multiple choices for emotional support. We need a healthcare system that can point you to the resource options. Including different types of technology
• Having so many resources is great. And also overwhelming at first. Be sure to offer resources all along the way and not just in the beginning when processing info is difficult and needs not yet known. #gyncsm :)

T6: How do you think disparities in care and access to care impact emotional support needs following a cancer-related diagnosis?

• #gyncsm disparities in care can make it difficult to get that initial diagnosis!! It was a challenge for me and I have access and knowledge. #SystemicRacism is prevalent in this area. Advocacy & awareness a needed.
• T6: We know Black women's physical pain tends to be dismissed more than white women's, so I can imagine their emotional pain is, too 
• #SystemicRacisim and the health disparities it causes runs the spectrum of your #gyncsm journey from diagnosis to emotional support.
• Let alone those who are transgender 
• https://ascopubs.org/doi/full/10.1200/JCO.21.01249 This was a very powerful piece. @JCO_ASCO
• #gyncsm The #healthdisparities amongst minorities are enormous and disconcerting. Minorities often to not get the basic care they need, require and deserve, let alone the emotional support. It's sad and we must do better on this front. #MinorityHealth

T7: What resources, organizations, groups, and/or people have offered you the best emotional support? What resources do you recommend for those looking for emotional support?

• T7: Organizations with oncology social workers you can talk to on the phone include: @CancerCare Hopeline 800-813-HOPE (4673) and for #ovariancancer (Ovarian Cancer Research Alliance) @ocrahope 212-268-1002
• @ocrahope has online support groups ocrahope.org/patients/stayi… and @stepsthrough @ClearityFnd has a 6 month program of free professional counseling in tandem with education, referrals and other resources for any woman facing ovarian cancer, her family and active caregivers.
• Cancer peer matching via @ImermanAngels @CancerHopeNet @ocrahope and also   @afreshchapter 's mission is to help people make sense of the complex emotions of cancer and give them the tools, support, and community to thrive – even in the midst of challenging circumstances.
• Tips for care via @oncosocialwork https://aosw.org/patients-caregivers/tips-for-care/  and Cancer Support Community @CancerSupportHQ has a live webchat and many other resources cancersupportcommunity.org
• @SHAREing has a great "Let’s Talk about It: Ovarian Cancer" monthly online group. @CancerHopeNet one-on one and @ClearityFnd and I also like @teaminspire @smart_patients and recently @advovarianca_hu (Advanced Ovarian Cancer )
• #OvarianCancer @stepsthrough stepsthrough.org via @ClearityFnd The. Best. Ever!! #gyncsm  Life saving on so many levels!! 

T8: As patients, advocates, and healthcare professionals, burn-out is a problem that has for many only intensified in recent years. Where do you find emotional support for interacting with the healthcare system?

• T8: I think it is important as advocates to give ourselves permission to step back from time to time. And also to give yourself a healthcare/cancer-land break when you can. 
• T8: #gyncsm: Limiting interaction -- social media detox is always helpful.
• T8 Some oncology organizations like @ASCO are addressing provider burn-out and offering support . 
• T8: I’d have to say colleagues, friends, family, counselors. People with an open ear and a willingness to listen and provide support and help with resiliency.

We invite you to join us for our next #gyncsm chat on Wednesday March 9th at 8pmET as we discuss “Cervical Cancer Updates and Global Initiatives”.

Have a good month! 

Dee and Christina

 

Finding Emotional Support - February 9, 2022 #gyncsm chat

When you receive a cancer-related diagnosis, there are many areas of your life in which you may need support. Sometimes we need help cleaning our homes. Sometimes we need help with food shopping or preparing meals. Sometimes we need help getting to treatments, doctor visits, blood draws and scans. When these issues occur, there are many who want to jump in and help us or we can find organizations that will help us complete some of these tasks.

But there is another area that is many times overlooked during and after treatment - emotional support. In a study #gyncsm participated in and reported in the Journal of Patient-Centered Research and Reviews, many women feel vulnerable and 

During this month's chat on Wednesday, February 9, 2022 at 8pm ET ( 7 CT, 5 PT) we will discuss ways and places to find emotional support. After a discussion of the emotions we can experience, we will discuss who to talk to about your emotional needs, what organizations support those with emotional needs, and also the impact Covid -19 is having on survivors' emotional needs. 

Guiding our discussion will be the following topic (T#:) questions:

T1: What are some of the emotions that come with a cancer-related diagnosis? How have yours changed over time?

T2: When you have needed emotional support, who did you reach out to? Was your healthcare team involved?

T3: What do you see as some of the impacts that the global pandemic is having on the emotional needs of those facing a cancer-related diagnosis? How has the pandemic impacted your need for emotional support?

T4: Based on your experience and perspective, what types of emotional support do patients need most and what areas do you see as lacking adequate resources?

T5: What have you found to be most helpful in providing emotional support? In-person or virtual support groups, other online platforms, one-on-one peer support, friends/family, counseling, other?

T6: How do disparities in care and access to care impact emotional support needs following a cancer-related diagnosis?

T7: What resources, organizations, groups, and/or people have offered you the best emotional support? What resources do you recommend for those looking for emotional support?

T8: As patients, advocates, and healthcare professionals, burn-out is a problem that has for many only intensified in recent years. Where do you find emotional support for interacting with the healthcare system?

We look forward to having you join us on the 9th. 

Dee and Christina 

#gyncsm Co-founders

Dec. 8, 2021 Surviving Holiday Stress

For the last chat of 2021 we discussed Surviving Holiday Stress. Online resources and advice were shared by participants to help with the challenges of celebrating holidays as a cancer patient/survivor. You may find the transcript here and the analytics here. 

Below is a summary of the topic questions and answers . 

T1: What do you look forward to during the winter holidays? What traditions bring you comfort and/or joy?

• I continued the tradition I had growing up where each child picks out a new ornament for the tree each year. We also have 2 different advent calendars - one from my childhood - that we all enjoy. Watching ELF and the original Miracle on 34th Street are also a must. :)
• My favorite holiday traditions are time with my people, our annual homemade gifts, baking, music, and holiday light tours.
• I love baking cookies that I used to eat growing up. And I love decorating the tree. Every ornament has a story - a trip , event or from when my kids were growing up.
• I also love to attend a Christmas Eve candlelight service with my husband and kids before heading off to celebrate with extended family. Some peace before the bustle. 

T2: How can a major diagnosis impact your experience of the holidays and your traditions? Does this change over time?

• per @SHAREing expectations of being or looking like the person you were before your diagnosis can have an impact on your decision to attend gatherings or on your interactions during gatherings. Financial strain can also make gift giving an added source of stress.
• When getting chemotherapy treatment I didn’t have time for things or was so tired I could do the things if I wanted to. So was a tough to adjust at first.
• I also talk with clients about giving themselves permission—and explaining to others—to need something completely different than previous years. Sometimes, it is okay to let a tradition lapse.
• Some people may just need to have a caregiver say - It's OK to not - bake dozens of cookies or buy all the gifts or put every decoration out. 
• per @CancerHopeNet a great strategy is to simplify - get to the core of what matters to you - but also plan for how cancer may interrupt your celebrations. They also remind us all to check on caregivers and their needs over the holidays.
• If you have a holiday tradition you'd like to participate in please talk with you healthcare team. You may be able to reschedule to allow a short treatment break so you don't miss important times with your family. #LittleBigThings
• And some caregivers need a support person who is reminding _them_ that it is “okay to not” as well

T3: What are some things you changed about how you celebrated when you/your loved one were first diagnosed? What are some tips for those celebrating while in active treatment?

• Similar to the last topic, I encourage people to focus on their top priorities, and let some of the rest fall to the side. Maybe you do less baking, fewer cards, less running. That’s all okay
• For the holidays, @power4patients suggests: 1) Know your limits and rest when you need to. 2) Allow extra time for preparing for travel or a get together - especially med prep. 3) Be conscious of foods you don't normally consume.
• I picked out only 2 cookies to make (instead of 5), I had family help set up and put the lights on the tree. Which left me with what I love adding ornaments. I asked my husband to do the shopping for gifts.
• Another reality is that, if you are in active treatment and physically miserable, the traditions may need to take a backseat. If needed, give yourself permission to have Christmas in February or Hanukkah in March.
• In 2011 I wrote this - Advice from Holidays Past https://womenofteal.blogspot.com/2011/11/advice-from-my-christmas-past.html with some tips.

T4: How can you manage relationships when you feel like you are expected to fulfill all your "usual" roles during the holidays? What can you do ahead of time to set expectations?

• In some ways it is so much easier to just do what we always do... but talking about things - even hard things - can end up being rewarding. Maybe someone else in the family has always wanted to help do or try something but no one's ever asked. :) 
• I encourage patients and caregivers to be willing to set aside “usual.” To talk to one another and key family members about most important goals/priorities and to say up front that things can be both different AND good.
• We downsized everything - room-sized tree, modified versions of activities or holiday shows to keep the spirit while recognizing my MIL’s limitations. #gyncsm #caregiver
• In this article, @cancerhopenet suggests sending a letter/cancer update so you don't have to keep repeating yourself and to be able to just set some clear expectations about how you can celebrate and what you do/don't want to talk about. #gyncsm https://blog.cancerhopenetwork.org/2021/11/03/surviving-the-holidays/
• I gently remind folks that it is wildly unfair to expect themselves to navigate the holidays as if they didn’t have cancer. They don’t have to like it, but the cancer is there. Holidays with different expectations can be way more fun than holidays with exhaustion.
• It is hard to ask for help but sharing with loved ones that you might need help with things ahead of time will make it easier.Telling them which festivities are top of your list can help them let others know your situation
• Women are notoriously bad at asking for help. Everyone who loves someone with a gynecologic cancer this holiday - please ask, offer, ask, insist on helping. #gyncsm #LittleActsofKindness
• This is a place where family and loved ones have a role. “Let me know how I can help” may mean leading the charge to scale back or modify traditions. Or being the one to champion your loved one’s need for rest. Take the hard convos off their plate. 

T5: How do you feel about starting new traditions and letting go of others? How will this year be different for you?

• I love the hope and possibility of a new tradition. There are some chores that we hang on to because “we’ve always done it” not because we love them. A forced re-evaluation can make room for something beautiful to grow.
• Even if you stopped treatment a few months before, you still might not have the energy to "do it all".
• Traditions ground and connect us to our past, so letting go can be hard. Being sad about that is okay. Mixed feelings are to be expected. Traditions can morph and change over time and new ones can bring joy too - while still finding ways to honor the past.
• It was hard that first year but the next year holiday season I was – “I don’t need to do that this year either” So the new traditions were OK. 
• We stopped doing gifts for the 18+ several years back and started doing charity donations instead. Some small gifting has crept back in but, all in all, it is way less stressful. Sometimes a change of pace is just what everyone needs.
• @americancancer has this great article Handling a Serious Illness Through the Holidays During the COVID-19 Pandemic https://www.cancer.org/latest-news/handling-a-serious-illness-during-the-holidays.html

T6: What are some tips for being more mindful or "in-the-moment" as you celebrate? How can you re-center if things get overwhelming?

• https://www.hopkinsmedicine.org/health/wellness-and-prevention/4-mindful-tips-to-destress-this-holiday-season 1) Accept Imperfection. Can good be good enough? 2) Where does this fit in the grand scheme? Can I use this moment of frustration as an opportunity to reflect or find a way to make it pleasant? 3) Take a deep breath and respond w/kindness, 
• I think I've gotten better about listening to my body and asking for what I need. I can better sense my anxiety creeping in and have gotten better about speaking up.
• For me- If we were visiting others I would ask ahead of time if they had a spot I could lay down if I needed too during the festivities. I did take advantage of it a few times and felt refreshed when I returned to the group.
• I appreciate these tips on "Protecting Your Mental Health During the Holidays" from @afspnational: https://afsp.org/story/from-thanksgiving-to-new-year-s-protecting-your-mental-health-during-the-holidays Get outside during daylight hours. Take a risk and connect if you are feeling lonely. Do at least 1 thing to improve your sleep this season. (1/3)
• (2/3) continued... Take breaks. Remove something from your holiday “to do” list. Find a balance between being w/ others and being alone. Find the choices w/in the obligations (assuming you can’t avoid them entirely). Prioritize activities that support your mental health
• (3/) continued... They also suggest rehearsing a few phrases to help you answer various lines of questions that might come up like: “I’d rather not discuss that today/here.” “I don’t know how to respond to that.” “I’ll have to think about that and get back to you.”
• @cancercare has good advice in Coping with cancer during the Holidays https://www.cancercare.org/publications/55-coping_with_cancer_during_the_holidays 

Please see Resources below. 

Note there will be no #gyncsm chat in January 2022. 

Save the Date for our next chat on February 9, 2022 at 8pmET on “Finding Emotional Support”.

In January, you can join  #gyncsm @iamcervivor and more for a #SaludTues chat during #CervicalCancer Awareness Month on Tuesday, January 4, 2022 at 1pmET .

We hope peace and light are with you through the winter holidays. We look forward to chatting with you in 2022!

Dee and Christina

RESOURCES 

Coping with cancer during the Holidays https://www.cancercare.org/publications/55-coping_with_cancer_during_the_holidays 

From Thanksgiving to New Years Protecting Your Mental Health During the Holidays https://afsp.org/story/from-thanksgiving-to-new-year-s-protecting-your-mental-health-during-the-holidays

4 Mindful Tips to Destress This Holiday Season https://www.hopkinsmedicine.org/health/wellness-and-prevention/4-mindful-tips-to-destress-this-holiday-season 

Handling a Serious Illness Through the Holidays During the COVID-19 Pandemic https://www.cancer.org/latest-news/handling-a-serious-illness-during-the-holidays.html

Surviving the Holidays https://blog.cancerhopenetwork.org/2021/11/03/surviving-the-holidays

Let's Talk About it : Ovarian Cancer   The Power of Traditions

https://www.sharecancersupport.org/lets-talk-about-it-ovarian-cancer-the-power-of-traditions/

Advice from Holidays Past https://womenofteal.blogspot.com/2011/11/advice-from-my-christmas-past.html 

Surviving Holiday Stress #gyncsm December 8, 2021

 

The holidays are a busy time for everyone. There are religious celebrations, getting together with family and friends, traveling, shopping for gifts, decorating, and food preparation. Being newly diagnosed with cancer, in active treatment, or during the survivorship stage adds to an already hectic schedule. You may have to juggle family obligations with a treatment schedule, adjust how you celebrate due to treatment side effects, and/or balance gift purchases with the financial burdens of cancer treatment. Join the #gyncsm community as we discuss the impact the holidays have on those impacted by cancer this Wednesday, December 8, 2021 at 8pm ET during our Surviving Holiday Stress chat.  

We will talk about the challenges and discuss ways to cope and make those special gatherings with family and friends more meaningful and less stressful.

T1: What do you look forward to during the winter holidays? What traditions bring you comfort and/or joy?

T2: How can a major diagnosis impact your experience of the holidays and your traditions? Does this change over time?

T3: What are some things you changed about how you celebrated when you/your loved one were first diagnosed? What are some tips for those celebrating while in active treatment?

T4: How can you manage relationships when you feel like you are expected to fulfill all your "usual" roles during the holidays? What can you do ahead of time to set expectations?

T5: How do you feel about starting new traditions and letting go of others? How will this year be different for you?

T6: What are some tips for being more mindful or "in-the-moment" as you celebrate? How can you re-center if things get overwhelming?

 

We look forward to seeing you on the 8th!

Dee and Christina
#gyncsm Co-founders

Surviving the Holidays - December 2014 Chat

This month we discussed how gynecologic cancer patients can "Survive the Holidays" while also dealing with treatment schedules, fatigue and the expectations of others. In addition to our Health Care Advisors (Dr D Dizon. Dr R Boulay, Dr A BeckerShutte), this month we were please to have The Robert H. Lurie Comprehensive Cancer Center of Northwestern University (@LurieCancer) and Mary Jo Graden (@maryjograden) a certified oncology social worker at Lurie join us. 

We welcomed 32 participants, averaged 12 tweets per participant and had over 1 million            impressions. You can find more of our chat statistics here and the transcript of our chat here.

The topic questions that drove our discussion this evening were:

T1: How has your experience with cancer impacted your holiday traditions and celebrations?

T2: What tips can you offer to those going through the holidays while in active treatment?

T3: What's your advice on handling family and friends who still expect you to create the “perfect” holiday?

T4: How will your holidays be different this year? Will you ask for help? Did you ask your healthcare team about food & activities?

Please check below for the resources that were shared during the chat. Patients & caregivers are invited to continue our discussion on the Smart Patients platform at https://t.co/yHJfsjcmMS .

We look forward to you joining us on January 14th, 2014 for our discussion of "Gyn Cancer Risk Factors". 

Christina and I wish you a very Happy Holiday and a Healthy and Happy New Year. 

Dee

Resources:

Celebrating the Holidays after a Cancer Diagnosis: A Survivor's Guide
https://www.sgo.org/sgo-blog-3/

Holiday Eating Tips If You're in Cancer Treatment via @AmericanCancer 
http://t.co/dbDdU7kSTX

Coping with Cancer and the Holidays - A Delicate Balance via @COPING_cancer 
http://t.co/ZSxvFK9SFK

Five Ideas for Maintaining your Holiday Cheer  via @CancerDotNet 
http://t.co/LmWsHY9Z8t 

4 Holiday Party Tips for Cancer Patients @MDAndersonNews 
http://t.co/8Q4QJc9jsL 

Challenge of Self-Care during the Holidays via Cancer Help Hub
http://t.co/NqY8YZagpR

Topic of the Month: Coping With Cancer During the Holidays - 
http://t.co/p4DFVwpiUZ

Heartfelt blog post via Mommy Upgrade on loss to cancer paired w/ mouth-watering make-ahead french toast recipe to bring a friend http://t.co/mcKCXtofi6#gyncsm

The challenge of being alone - @CancerCare
http://t.co/HY3bGzACgq