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HOME | Message from the Coordinator
The past year proved to be a learning curve for me. Through my work as a coordinator of the Registry, I slowly acquired more knowledge on Familial Adenomatous Polyposis Syndrome (FAP) and Hereditary Non-polyposis Colorectal Cancer Syndrome (HNPCC). This helped a lot in dealing with the daily work of the Registry. As a coordinator, I need to work as a bridge between our clients and the medical professions, I am much excited by the interactions with our clients and the personal growth I have experienced. Through telephone conversations, hospital visits and various functions of the Registry and the Self-help Groups, chances are there for me, Drs. Yuen and Ho, and our clients and their family members to talk to each other and most important of all, to share between ourselves the happiness and sorrows. Mutual support and understanding are the very essential elements. The counseling sessions proved to be a very important part of our Registry’s service, feedback from most of our clients indicated that they gained a better understanding of their situation and were much relieved from worries and fears after attending the counseling sessions. The Registry is going to be in its eight year, the confidence towards our work has also grown at the same time.
All of us know that the genetic diagnostic service has only become available recently. In fact this is also new even to the rest of the world. The Registry understands that we have to deal with the psychosocial aspects of our clients; in particular we have to understand the impact of genetic diagnosis to our clients. We have previously organized a psychosocial Seminar back in 2000 aiming to address the psychosocial need of family members with hereditary colorectal cancer syndrome and to explore ways to improve support for them in this aspect. Research into the psychosocial impact of our clients is underway. Preliminary results indicate that our participants tended to be relational or interdependent oriented in their decisional consideration processes related to genetic testing of colon cancer. Participants with higher risk perception focused more on the negative consequences of genetic testing. Psychological counseling might help these patients to cope with their concerns about being diagnosed as gene carriers after genetic testing. Definitely more need to be done so that we understand more and in-depth the psychological need of our clients so that the Registry can better plan to provide support to our members.
The Registry is dedicated to educate its clients. Improving the knowledge of our clients will help them to understand and face the specific situation that they are facing. A tailor-made talk was delivered to them by Drs Ho and Yuen on 23 March 02. Pamphlets on colorectal cancer, diet of cancer patient, and healthy diet for prevention of colon cancer were also distributed. Feedbacks from our clients and their family members attending said that the function was very informative and useful. This is very encouraging and also gives us reference on future topics to be delivered in the near future.
It is very encouraging to see the growth of the two self-help groups The volunteers from them are very much initiated to provide support to those members who are to undergo surgical operations. These are done through telephone conversations and hospital visits both before and after the surgical operation, which can really comfort and support those in their perhaps the most difficult moments in life. They also pay home visit to those members discharged from hospital after the operation. The Registry is happy to see the great improvement in the initiative attitude shown by these enthusiastic volunteers. Members of the self-help groups also actively participated in the "7th Annual Stride for a Cure” organized by the HK Cancer Fund. With the collaborative effort from Registry members, the Registry had got the highest donation to the Hong Kong Cancer Fund among all the hospital groups and won the Hospital Cup. It was a memorable moment of victory and excitement and I am sure that this was shared by the 60 Registry members and their families participated in the event.
By Emily Chan 2003
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