In early 2012, I was having gastric discomfort, so I took over-the-counter medication and it seemed to feel better. But as the days passed, the pain got worse, so after a few months I made an appointment and finally went to see a doctor. During his examination, the doctor suspected that my liver was enlarged and recommended that we immediately go to the hospital for more tests. That was how we found out that I had GIST.
The beginning of our journey as a GIST patient was not an easy one. Even the professionals did not seem to have a good knowledge of GIST. Resources on GIST were hard to come by in Singapore; the national cancer center support group does not have a GIST or sarcoma group. We were lucky to find the Life Raft Group online, and reading the discussions daily really helped us learn more about what we were dealing with.
Since GIST is a rare type of cancer, the treatment and the needs as a patient seemed to be very different from other cancers. The discussion we had on Skype with Janeen Ryan gave us a better understanding of GIST and the side effects of Gleevec. Furthermore, reading what everyone shared online was a great benefit. Knowing that there are so many GIST patients in the same position as me, on Gleevec, and surviving for many years helped to give me hope.
Through our own experience, we realized that GIST patients in Singapore have very limited resources locally. If we had so much trouble looking for information and assistance, there must be other people that have the same issue. So we decided to contact the Singapore National Cancer Center Support Group and asked them if we can help in forming a local Life Raft Group GIST support group for patients in Singapore. We met with them and discussed the unique issues facing GIST patients and have agreed to serve as the Life Raft Group Singapore Group Leaders. We look forward to meeting others in Singapore and providing assistance where we can.