On 28 April, MAX Malaysia has organized 3rd Congress for People Living with Blood Cancer with support from Malaysian Society of Haematology and Max Family, in conjunction with 10th Malaysian Society Haematology Scientific Meeting. This took place at Gurney Hotel, Penang.
This year, we have conducted for both Chronic Myeloid Leukaemia (CML) and Multiple Myeloma (MM) group of patients and caregivers. The objective of this patient congress is to provide a platform for patients and caregivers to share and learn about the disease; as well as receiving disease education information from haematologists.
It was a successful session with 116 participants included patients, caregivers, physicians and nurses participating in the session. MAX is the main organizing team on the day, with supports from a few volunteers such as patients and caregivers, and their friends. It was a great moments spending times not only for congress purpose, but I felt closer and warm working with them, we chatted about ourselves and anything without any worries between us. We just like a family!
The topic of the congress included “Myths and Facts for Blood Cancers”, “Clinical Trial: How much do I know?”, CML and MM updates and discussion, and lunch networking. The educational talks were conducted by 5 haematologists from different hospitals.
The session started with welcome remarks by Mei Ching of MAX, Dr Razak of Max Family and Dr Leong Kin Wah of MSH. It followed by two topics which applicable to both diagnosis. During the session, patients and caregivers were concentrating in the talks, some even took notes while the speaker were giving speech. I am glad to see them being serious and concentrating as this showed that they concern about themselves, their lives, the spirit of not giving up.
After a 20 minutes coffee break, the session continued with specific disease updates and discussion by splitting into CML and MM patient groups. Patients can choose to join in different language groups. This has helped tremendously in clear understanding about the disease and provided the patients and caregivers a chance to ask questions easily. We found that patients asked questions actively during in this small group settings, and highly contribute to the interaction between participants – physician and participants - participants.
Besides education session, there were also balloon sculpture activity and No Discrimination Campaign signing card activity that add more values in this congress. The balloon sculpture activity was conducted by a CML survivor. He has made many beautiful and unique balloons to all of the patients and families. Everyone was so amazed by his talent and happy to get the balloon! I can see the charming smiles from everyone and of course not forgetting about his effort and tiredness of making the balloons. I truly appreciated his kindness to be one of the volunteers in this congress!
The No Discrimination Campaign signing card activity was well received by all. Besides education supports, one of our core areas working together with patients and healthcare team is to reduce the cancer stigma in the community. We advocate for a key message which says “Cancer is Treatable. No Discrimination.” Patients should be given a chance in life. Supporters showed their support by signing the Sparrow Card which contains the key message, by also stating the supports’ name and city. The signed cards were then pasted on the wall as a symbolic of supports. You can see from the picture, the wall was fulled with colorful sparrows, with full with hopes!
Overall, all of the participants were thankful to have the chance to attend such patient congress. They found it was helpful for them to receive the proper inputs and extra knowledge about disease. Some of the participants even asked for a longer session. We are also glad to see participants were talking with each other, supports and networking happened naturally throughout the congress. We would said that participants who attending this patient congress not only can gained more updated and extra inputs regarding disease but also gained more new and supportive friends in their life! Looking forward for another patient congress in near future!