In the healthcare system, there are many individuals who inconspicuously bring comfort and support to patients in their care. One such individual who has been tirelessly working out to achieve this is A.S. Dass, who himself is a cancer survivor.
I had the first opportunity to meet A.S. Dass in Melbourne, when we were there for the World Cancer Conference, not at the venue of the conference but coincidentally on a winery tour through some of the enchanting wine yards in the outskirts of Melbourne. He’s the kind of guy that gets chatty and will impress you with his network and activities once you get to know him. He chas an extensive network in the healthcare circle, especially doctors, specialist, caregivers and volunteers; doing some great work with cancer patients and cancer survivors.
Dass was with the government service for 12 years and thereafter in an international agency. “A good friend of mine came to visit me one day and gave me a coupon for a blood test which I did not bother much and just left it there,” said Dass. “When my friend came back to see me 2 weeks later, he was visibly upset and gave me one hundred and twenty ringgit to get the test done, for which I was literally offended. So after this second prompt, I decided to do the test at the Lab. The girl at the counter suggested that I should incorporate another additional test which is not in the coupon. It was the PSA test, I had no clue what this test was for but obliged, as it only cost an additional RM30. The results came back in 10 days, and the PSA reading was 77.5; the normal readings should be below four. I was oblivious to the results until my friends pushed me to seek expert medical consultation. Then I went through the usual series of tests and consultation which confirmed my prostate cancer.”
“The day I was told I have cancer, I got very agitated and my first question to the doctor was, “How much of time do I have?” For me, cancer is synonymous to a death sentence. The doctor laughed, counselled and advised me that he has to do a series of test and only then consider the treatment options. I was given a booklet by the doctor titled, “ABC of Prostate Cancer”, which was an excellent reading material to understand all on prostate cancer.”
“Luckily, for me the tests showed that the cancer has not spread and the Gleason Score which is a grading system to evaluate the prognosis of prostate cancer, was 3+3, which I was informed means that the cancer is not very aggressive. Then I was referred by my urologist to two oncologists and both recommended the same treatment plan.”
While the treatment was going on, Dass visited the National Cancer Society Malaysia where he met up with Dee Sidhu, who was instrumental in establishing a support group. There were also volunteers, especially ladies from the foreign embassies and Dass was somewhat comfortable with the group. But he realised there were very few men participating because men were shy to discuss the issue in the open. After a chat with Dee Sidhu, Dass decided to start the Support Group for prostate cancer in 2003.
It was very heartening to know that as a cancer patient, Dass did not take it lying down but used his network of doctors in the field and his experience in bringing a movement for the cancer patients and survivors which is an important part of the whole continuum of care. From the group at National Cancer Society, Dass was asked by the oncologist at Subang Jaya Medical Centre to form another support group there and subsequently another request for a support group at Hospital Kuala Lumpur and one at University Malaya Medical Centre (UMMC), and both were started in 2014. And the next one would be established in May 2015 at Hospital University Kebangsaan Malaysia. These support groups were all started at the request of doctors in these institutions, who found the need for such a group, being part of the overall therapy for cancer patients.
For the last 11 years, Dass has been an advocate and driving force with cancer survivor groups and therapist to bring positive change and comfort to cancer patients. He believes the role of the group is very important where they meet together, sometimes with the presence of urologists and oncologists. In these groups, Dass takes the role of the facilitator.
“First we give them the rules and ensure they read and understand it. Rule number one is, it is not a political party, neither is a religious group or sect. We look at the emotional stress they go through,” said Dass. The umbrella body for these support groups is called a “New Beginning”, which is not an organisation but an identity name for all the support groups.
The members of the support group include patients, survivors, family members, therapists and doctors. Most of the time the members in the support group are emotionally upset and are seeking more information and treatment options. “We allow them to talk and especially at the hospitals the doctors would join the group discussion and are a big support for the members,” said Dass.
It should also be noted that while Dass was undergoing his treatment and facilitation of the support groups, he had a minor heart attack which resulted in doing a by-pass surgery at the National Heart Institute (IJN). “Meantime, I had other side-effects due to the hormone therapy and radiation I was going through. I had developed diabetes, osteopenia, a condition in which bone mineral density is lower than normal and enlargement of the breast,” said Dass. And a host of other urethra problems.
“I have come to terms with myself that if I can help another person with any of these problems, then I should.. After my by-pass I went to do an extra social work by joining the organisation called “Rakan IJN”, sharing my experience with cardiac patients individually which I do it on Fridays. Socially I have changed my lifestyle a lot,” said Dass.
He is also a supporter of patients who should take charge of their own health and manage it for positive outcomes. Thus I was pleasantly comfortable to find many individuals among his group who carry the same mental outlook after going thru the mill in getting through the illness.
Asked how he was able to have such positive attitude to life after suffering from prostate cancer, Dass said, “I keep my self busy and do not think of my problem but think of other people’s problems. I forget about myself. My next project is to assist in the setting up of the Foundation for prostate cancer. “
To him every year he survives is a bonus and he celebrates the occasion with his doctors and friends over dinner at a hotel. I was fortunate to be part of this memorable occasion this year and witness the closeness among the doctors and friends who all share the same passion in life. To fight your illness with positive and bravely as a team.
The importance of support groups in our communities cannot be more overstated. Malaysia’s health statistics shows the increasing number of cancer patients and the community has an important role to contribute and be part of this caregiving.
The message and lesson to take from Dass? In his own words: “For chronic diseases or conditions, we need to take a holistic approach that involves the medical experts, the patient and the support group from the community. To be successful we need everyone involved in the whole process and together we can focus on the critical role each of us plays in improving the health of all people in our communities.”
If you are 45 years and above, make an effort to get checked at least once a year; include the PSA test. Don’t ignore key symptoms – get checked if you identify key issues such as difficulty urinating, urinal bleeding or loss of bladder control.
Find out more about support groups here
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