I am excited to announce the expansion of our GIST Mentor program to include our international community. In June 2021, we trained seven LRG members from Austria, Canada, Chile, India, and Singapore. LRG’s Global GIST Mentors are survivors or caregivers who volunteer their time, energy, and talent to support others. Mentors offer their mentees understanding and empathy and reassure patients and their caregivers that they are not alone in their GIST journey.
On September 29th, Piga Fernández, LRG Global GIST Consultant and GIST Mentor from Chile, and I presented the LRG’s Global GIST Mentor Program to the SPAEN (Sarcoma EuroNet) community during a Coffee Chat webinar. I shared the mission of the program, requirements for volunteers to become a GIST mentor, what a GISTer or their caregiver need to do to connect with a mentor and how successful the mentor program has been for the GIST community. Piga shared her personal experiences as a GIST Mentor and how she helps other GISTers with emotional support, advocacy assistance and education along their GIST journey.
Piga and I also joined other Global GIST mentors on Thursday, October 7th for our LRG Conversations with the Global GIST Mentors webinar. Speakers included Hazel McLeod of LRG Canada and Amelia Yeo, LRG Representative from Singapore. Each shared their GIST journey and why they chose to become a volunteer GIST Mentor.
Piga said that during meetings and events so many GISTers want to connect with someone who is like them and has walked in their shoes. Piga wanted to give back and be that person that assists GISTers. She went from going through misdiagnosis and other life-altering circumstances to connecting with the LRG and receiving the resources she needed to thrive.
“I was diagnosed a long time ago when very few people knew about what GIST was and I felt at the beginning it was really hard to have a cancer diagnosis but even more, having this rare type of cancer that no one knew much about,” said Piga.
Piga went through a very hard time and says she didn’t want to know anything about the disease, she just wanted to take her pills and get on with her life. Eventually her curious nature sent her to the internet to find out more about GIST and she discovered the Life Raft Group.
“It was really great knowing that someone else had GIST and there were people who knew what this was about and could answer my questions. In this new role as a Mentor I saw the importance of this Mentor Program because we are reaching people all around the world,” added Piga.
What she learned along her path as a volunteer for the LRG and for Fundación GIST Chile is that while events, webinars, meetings, and support are important for patients and caregivers, the one-on-one moments spent relating to someone in a similar situation during the breaks were crucial for patients and caregivers. There was definitely a need for peer-to-peer conversations.
Hazel described how she wants to help people along their journey to find accurate information. She wants to help people to understand and explore all treatment options, encourage them to ask questions, and give them hope knowing they are not alone. When Hazel was newly diagnosed, she gathered a lot of information about GIST and really wanted to discuss all this information with someone and though her husband was a great support she says she wanted to go over the facts again and again with someone who was ‘in her shoes’ and who understood her feelings, and be encouraged on her journey from that perspective. Connecting really changed her journey. She got involved in the LRG Canada Sarcoma Group and soon realized she wanted to be that person that someone could come to, to share hope, know that they are not alone, and what options you have during this journey.
“Even when you get to the most difficult challenges in your journey, you are not alone,” shared Hazel, “There are those of us that want to come up alongside of you, to talk with you, and help you work through.”
Amelia expressed her desire to share whatever GIST knowledge and information she possesses with as many patients and caregivers as she can. As a caregiver, the most important advice that she can share with the same is that they practice good self-care. A former piano teacher, Amelia’s husband Andrew was suddenly rushed to the hospital two years ago, where they found a huge mass on his intestine which was removed with emergency surgery. After the initial shock of being diagnosed with a GIST, Andrew was in good hands with his medical team, who gave them information. The couple did research on their own, but it was still a lot to process. After the shock passed, they joined GIST support groups and eventually found and joined the LRG.
“Some things you cannot learn by reading. Some things you want to learn or hear from other patients and caregivers themselves. I was so lost in the beginning,”Amelia said, “I was shown so much kindness and compassion and given so much support, I wanted to give back. I wanted to offer the same to others.”
As an LRG representative in Singapore, Amelia helps others through Asian GIST support groups on WhatsApp and began as a LRG Global Mentor recently. “Knowledge is important in the beginning. We have a few caregivers in this group, but we have mostly patients right now. As a caregiver you must make sure that you yourself are being taken care of first so that you can take care of your loved one.”
Diana, Piga, Amelia and Hazel shared these thoughts and expanded on more in our webinar, LRG Conversations with Global GIST Mentors available on our Youtube channel. You can also hear an extensive question and answer time that will illustrate more about how our Global Mentor Program works.
If you would like to become an LRG GIST Mentor or connect with a Mentor, please contact Diana Nieves, Senior Director of Outreach & Engagement, at dnieves@liferaftgroup.org.
