A Caretaking Q&A: The Journey and Support via Social Media
Caregiver to her father and CCF Volunteer and Caregiver to her father Nicole interviewed Legacy Caregiver and talented TikTok-er Jen about how she faced the CCA journey with her mom and about how she shares her knowledge with others on her social media platform.
Tell me more about your mom’s cancer journey?
My Mom was diagnosed around May 2023 with Stage IV bile duct cancer/cholangiocarcinoma. They informed her that her type of cancer was intrahepatic. In other words, hilar-cholangiocarcinoma is bile duct cancer with nodules in the stomach and in the lymph nodes in the GI system. During this time, she underwent multiple versions of chemo, stents, etc. She passed away last year in mid-July. She was and is still the strongest person I’ve ever known.
What was your initial reaction when she was diagnosed?
During this time, I was diving into any data I could find, like some arrogant Indiana Jones thinking there was one article out there that someone just didn’t read through all the way that had a magic sentence with a cure for my Mom.
I remember attending the Cholangiocarcinoma Foundation’s Annual Conference remotely, taking copious notes, screenshots, etc. Basically, I was trying to find anything that would limit the symptoms, slow the progression, and save my Mom.
What setbacks did you struggle with during the journey?
By the time I had reached out to the NIH, my Mom was already nearing the end of her journey. In June, she had suffered a major setback which caused her to have a loss of 1/3 of the blood that her body needs to function.
We took her to the ER, where she had two blood transfusions and we had the difficult conversation around hospice, where she spent the last few weeks of her life.
How did you deal with those setbacks?
While it may seem counterintuitive, I tried to use humor throughout the process, even dark humor, to help keep things light in an unforeseeable darkness.
One example I remember was when she was escorted in an ambulance back home to start hospice. On the way, I suggested that we rob a bank because NO ONE would have suspected it and we probably could have gotten away with it – even the ambulance drivers were on board! Unfortunately, she said no. Very disappointing!
During those last few weeks in the hospice, how did you cope with the emotions? What did you do?
When I look back, I choose to focus on being grateful for that entire year when we got to spend as much time as possible together. I don’t know how many trips I took from California to Washington State, but I’d have taken as many as I could just to be there. We Facetimed almost every day with my toddler so she could develop strong memories of her Grandma.
As I said, my mom was (is!) the most beautiful person inside and out and I was grateful to have been by her side every day for the three weeks she was in hospice care.
What was your experience with social media during the journey?
I followed two creators who were young Moms who both had cholangiocarcinoma on TikTok. They both passed earlier in the year before my Mom. These women (Nina @bumpsandbrewses and Mandy @lnlmom9) gave me so much hope and left a kind journey of all of their experiences on TikTok that are still a wonderful resource for anyone who is experiencing this disease. I remember my initial reaction when the TikTok ban was first discussed – that their legacy and all their videos would be gone. I’m glad they’re both accessible again.
Why did you decide to start creating more TikTok related content?
While there were definitely benefits, as mentioned above, in social media, TikTok felt at times like a graveyard when I was trying to find information on this disease. I would find someone’s page, follow their videos from the previous year and then learn that they were gone. This can be a hard reality and devastating when you’re looking for hope. I decided to start making videos for caretakers describing my Mom’s journey and how I’ve been preserving her memory. I wanted to help others not go full Indiana Jones (like I had initially done) but to use the resources available and spend that time being present with their loved one.
How are you supporting other careteakers?
At one point, I was receiving a comment or question about once a week from someone who has/ had been impacted by this disease. I collated the questions and made a document that is available on my social media bio. It walks individuals through resources, questions for an oncologist, and ways to help. I wanted to give folks a leg up to avoid the deep dive in data so they would know where to go and where to look for help.
What are some legacies your mom left behind?
On a practical level, my Mom wrote out 16 birthday cards for my daughter to give her until she turns 18. We recorded an audiobook, sewed a quilt, and took tons of videos and photos. We also speak about my Mom regularly to my daughter.
In terms of social media, I look at the videos that I have made on cholangiocarcinoma as a way to help honor my Mom’s legacy.
She was an incredibly strong and creative woman who just wanted extra time which was cut short at 59. I’m always grateful for any opportunity to speak about her and to help others who are going through this disease. Thank you for the opportunity to share about her.
Follow Jen on TikTok at @jensaunderson!