Sunday Morning at Kiara Park

The Max Family had been active over the years and every few months, they would have events targeting new CML patients. This time around they decided to do in an informal setting.

I was asked to join them for a Sunday morning "walk" at Kiara Park, near Taman Tun. The target was mainly those recently diagnosed with CML as an introduction to support group as well as disseminating information about their disease and treatment.

A bit of taichi to start the day offLush greenery

We started off early at around 7.30, but it was clearly not early enough. The park was already full at the time I arrived and getting a parking slot was a challenge. I ended up finding a spot 10 minutes away from the park, which was an exercise on its own.

The meet was very well organised. We were divided into three groups with me taking the first Malay group. After a 20 minutes walk around the busy park, we found a shaded space to sit and started the proceeding.

And then the real work begin ...

My group was further divided into two, ending up with around 15. It was an open discussion although they were rather timid at the start. By the end, the floodgates opened and it was a challenge to get away. I had to do my ward round by 10!

The format itself was good, although I wished that the parking would be easier. We did cover a lot during the session and hopefully the patients would get some benefit from the session. The park itself was great, although crowded on a Sunday morning.

Education session tengah rancak berjalan

Completed my session earlier and now everyone is broken into smaller group. Each group is based on the medium of cmunication. I gave my talk in Malay, while a few of my colleagues took the Mandarin and English group. I didn't manage to stay for too long though. I did my interview and by the time that is done the session was almost over.

At the moment I was treated by a saxophone solo by one of the patients. At the end, one of my patient was asked by MaxFamily to pass me a token, which I thought was a nice touch. Food was nice, but I can't hang on as I needed to give Idlan a lift later in the afternoon.

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Arrived at Hospital Ampang

The main lobby here. Patients are still lingering around the hall waiting for the next session after having tea. Going to start off the education session soon, then I will be off to speak to the media.

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Patients are the best source for advice

From my bedroom, originally uploaded by Haris Abdul Rahman.

Such a bliss able to wake up on a Saturday morning and not having to think about rushing to work, even though I will have to do the rounds tomorrow. I spend the morning surfing the net and putting the final touches to my slides for a talk later this morning.

I have always been a great advocate that the support a patient can have especially when we talk about cancer has to be from a fellow patient. Those that have already gone through the same thing, experienced the emotional roller-coaster first-hand. Their advice won't be pretentious like the once you get from doctors. Unfortunately the concept of patient support group is rather alien to our society. Cancer is still regarded as a taboo subject and I have sent countless number of hours counseling patients that their cancer was not the work of black magic or karma. It is not something they did in their past life, and no .... they are not infectious. Cancer can happen to good people and it can happen to you!

I am not referring not just about counseling patients here. Even close member of my family have this mindset. It is endemic in Malaysian society. Some of my family members even talked down on me when they learn that I am just a Haemato-Oncologist. They even think that GPs are more superior then me because they have a 'clinic'! So, when I have the opportunity to address the public on this matter, I will leap to it. There is even a press conference after. I will try my best to be eloquent.

Anyway, everything is set. Leaving the house soon to Hospital Ampang. I am sure that the patients appreciate my efforts, and that's what matters .... for the time being .... until I take over the world that is ...

Conference Day 2

So, today is the second day of the conference and I am suffering .... for the lack of sleep. Went to visit my parents last night as my Dad is flying off to Surabaya earlier this afternoon. Had no choice but to watch Akademi Fantasia, a spin-off of British Fame Academy. Suffered through much agony.

Then came the whammy! Stayed up until 3 am to watch United play Spurs. And by God, it was well worth it! Had 4 hours sleep, went to have breakfast at mum's and then gave Dad a ride to Sentral for him to catch his flight. Attended the meeting on time, and I did not dose off. Amazing.

The talk I thought were straight to the point, relevant and interesting! Rather than treating it as a lecture, it was more of a discussion. An intimate disclosure of how the experts actually deal with their day-to-day management of their patients, rather than the run-of-the-mill 'this is what the latest guidelines say we should do'! A few pearls were shared, and the question were answered matter-of-factly. The interesting discussion was certainly about patients getting pregnant while on Glivec. The party line is certainly clear.

Ornaments at the Main Lobby, Le MeridienUnder no circumstances should they get pregnant. Unfortunately, turning the disease into a chronic disability comes with it's own social baggage. We can't tell our patients - often young - and eager to have a family to just forget about having children. I have children of my own, and I appreciate how they feel. At the same time I understand the stance of the manufacturer not wanting to declare that the drug is safe during pregnancy, because there is definite evidence of theoretical harm to babies in the first three months of pregnancy. During the discussion, there emerged some strategy in terms of how to deal with it, but it is not something I wish to bore you with on this post. Do email me for details.

The whole thing lasted until 12.30, then had buffet, which was actually rather good. Had the standard rack of sashimi of course! Endured the usual chorus of 'Wah! You eat raw fish ah?'. Hey! It's Halal what? Enjoyed it!

Then spent the rest of the day pleasing the boys back home. We went to do a bit of shopping at Great Eastern Mall and had tea at Alexis. Good bowl of salad and pizza! It was nearly 7 when we finally reached home with both Idlan and Irfan nodding off to sleep!

Again to reiterate the point, bringing the speakers into Malaysia rather than flying us out is certainly a way forward. Apparently the dinner that I missed last night - at Carcosa - was rather nice. Cultural shows and the whole nine yards! Well done Novartis!