Hi, my name is Amanda, and my partner, Paris, has been a FibroFighter for a little over a year. When Paris first got diagnosed with Stage IV Fibrolamellar Hepatocellular Carcinoma it felt like my life came to a complete halt. It stopped, got shaken up, and got turned completely upside down, and it remained that way for a year. Every day I would wake up more devastated than the previous day, I couldn’t stop grieving the life we used to have and I couldn’t get a grip on the anxieties I had for our future. I felt so isolated and alone on this journey, it felt like no one close to me could truly understand the anxiety, stress, and heartbreak I was feeling daily. Then, I found other Caregivers who also shared the same desire for community and we created a safe place to talk about the gross, scary, and everything in between. After a long year, the grieving has slowly dissipated, the anxiety is more manageable, and I have finally found a group of people who know what it’s like to love and care for someone going through something as scary as Fibrolamellar.
The Virtual Caregivers Chat is a private space held monthly via Zoom. This space is for families, parents, and spouses wanting to connect and discuss their experiences. For more information or to register, please contact ContactUs@fibrofighters.org or visit our social media pages for the latest news about meetings.