#gyncsm Community: December 2021

We are pleased to participate in the #SaludTues chat on "Raising Awareness for Cervical Cancer" with @IamCervivor, @NFIDvaccines, @StopHPVCancer, @latinxvocesllc, @UTHealthSAMDA .

Via #SaludTues:

Each year, more than 14,000 people are diagnosed with cervical cancer. The cancer is especially hurting communities of color, with Latinas at a high risk of diagnosis. But cervical cancer is preventable .

Stopping cervical cancer for Latinas and all communities means equitable education about the causes, prevention and treatment of HPV and cervical cancer .

Join #SaludTues on Jan. 4,2022 at 1:00PM EST to tweet about how we can stop cervical cancer in celebration of Cervical Cancer Awareness Month.

What: #SaludTues Tweetchat "Raising Awareness for Cervical Cancer
Date: Tuesday Jan. 4, 2022
Time " 1:00-2:00 PM EST ( 10-11 am PST)
Where: on Twitter using #SaludTues
Host: @SaludAmerica
Co-Hosts: @IamCervivor @NFIDvaccines @StopHPVCancer @latinxvocesllc @UTHealthSAMD

We will open the floor to data, resources and your experiences as we explore:

How cervical cancer is caused ,screened and treated
What we can do to address the stigma and misinformation around HPV and cervical cancer
What resources are available to cervical cancer patients and survivors

Learn more about Salud at https://salud-america.org/

Learn more about #SaludTues chats at https://salud-america.org/tweetchats/

Link: https://salud-america.org/saludtues-tweetchat-raising-awareness-for-cervical-cancer/

See you in the New Year!

Dee and Christina

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 .