Lost in Translation

So, I had to do a bit of translating. Started them a couple of days back but only managed to finalise them after sahur this morning.

It was a pamphlet for an upcoming patient support group I was involved in. The original was in English, and I had to turn it into Malay. The initial draft was far too technical for everybody, but not as bad as if you cut and pasted the whole thing into Google Translator.

I then realized that it was more difficult than I imagined it would be to have translation which actually both made sense and non-technical. Now, I appreciated why the translator were paid hell of a lot of money …..

Down in JB

I was asked to participate in a patient support group event down in JB, a course I have always gladly support. I did a few sessions in the past, although they were mainly in KL. Puan Anita initially wanted to join me but his brother is due to return from Turkmenistan. We decided to ditch that plan. We were gearing up for the trip to Kuala Kangsar next weekend, but that will depend on whether my in-laws were coming or not. Rather difficult if they can’t make it with us.

Since I was traveling alone, I decided to drive down after lunch. I made a stop at Ayer Keroh for some ‘Root Beer floats’ at A&W, before kicking on. The weather was nice initially, but by the time I reached Simpang Renggam, it turned. It poured down and I had to take my time. I made it in the end and checked into the hotel just after 5.30. It looked like I have a session to attend after dinner. My colleague, Dr Bee, is from Muar. I gather that he was spending the day at his parents and will be driving down - will only take him less than a couple of hours mind you - after dinner.

Initially I was thinking of having a look at what the town have to offer, but don’t really fancy doing it alone. A quick check, and they might be showing the football in my room later. Something to look forward to …. Will blog later about the hotel. 

MaxFamily

The concept of patient-driven support group is still alien unfortunately in Malaysia. As I elaborated in previous posts, it was much to do with the taboo of cancer in our society. Patient still feel the shame and stigma of being labelled cancer sufferer and often suffer in silence. They retreat into their shell. Change in attitude cannot come soon enough and the moment I heard about the formation of a support group for Chronic Myeloid Leukaemia back in 2006, I jumped in to offer support pretty quickly. MaxFamily was born then, through the initiative of patients living with CML, who came together since the drug used to treat this form of cancer was provided by the Pharmaceutical giant, Novartis via an international NGO, the Max Foundation.

Tony with his guitarSince the Max Foundation supervise the provision and distribution of the said drug, Glivec, it was only natural for them to offer support for their clients. From this, the impetus for the formation of MaxFamily was seeded. The society has grown from strength to strength, much through the hard work and effort of the MaxStation Coordinator Miss Ong Mei Ching, ably supported by the committee members of the MaxFamily, and their President, Dr Razak, an Orthopaedic Surgoen and CML patient who is also on the medication.

The MaxFamily organises regular meetings, as a forum for patients and caregivers to learn more about their disease and also offer peer support especially to new patients. Their assistance has proven valuable and I am sure many of the members benefited greatly from such meet. Over the years, I was lucky enough to participate in their events, either as a speaker or facilitator. I even insisted on a few occasions to be present even if was not invited. I think they got the hint and decided to invite me this time …..

Their last meet was held at Shangri-La last Saturday, in conjunction with the ASEAN Federation of Haematology meeting held on the days previously. I participated in the public forum but the highlight of the show was most definitely the talk given by Dr Alan Teh. We were concerned at the beginning that the talk may be too technical, but it proved to be pitched just right, initiating a great Q&A session before the break. As Glivec has been proven to be a potent agent to control the disease, Dr Teh highlighted the importance of disease monitoring. He laid down the justification of regular check-ups and tests, how to deal with the known side-effects of the drugs and the alternatives should the drug fail. He also eluded to the fact that the drug was stopped, CML may return and patients may become ill again.

The forum came after the break, the panel being myself, Mr PT Teoh, a patient and Puan Jamaliah, wife of a CML sufferer. The session was mediated by Dr Razak. It addressed expectations issues and the often overlook psychological aspect of the diagnosis. I have to admit that the current state of affairs in terms of consultations may not be ideal but in light of the pressures of time and burden of work, the doctors looking after the patients with CML in general were doing the best that they can. We are certainly moving towards the age of patient autonomy, but the power can only be put in good use with good patient education and understanding by the Physicians. 

Dr Alan Teh, Pat Garcia-Gonzalez, CEO of Max Foundation, Ms Ong Mei Ching of MaxStation Malaysia and myselfPicture taken on previous meeting held at Hospital Ampang last OctoberAfter the serious discussion, came the fun. One of the MaxFamily member, Tony, is a local artist and has written a moving song about the Foundation, which he sang on the day. All together, it was a good session although I was hoping the turnout to be a bit better than it was. For more informations on the MaxFamily or CML treatment in general, please click here to land on the MaxFamily website.

Another Weekend .... Another Conference

It is the season now when almost every weekend, my calender were filled with conference date. And again, similar to last weekend, the organiser is using the same tact. Bring the international panel in, fill the audience with regional delegates, and another interesting meet-up. The venue this time is Le Meridien, at KL Sentral. But the meeting is certainly not on the cheap. Rumour has it that it cost USD 1000 per delegate pro rata.

There is the cost of flying the speakers and delegates in. They will need the flight and lodging taken care of. Then, there is always the conference dinner. It was KL Tower last weekend. It is Carcosa Sri Negara tonight. It may be good for the Mat Salleh and anyone who can attend. Unfortunately I am on call tonight, was it was 8pm by the time I finished my rounds.

The meeting today was concerning Chronic Myeloid Leukaemia (CML). It was a disease that was universally fatal. But the patients do not die there and then. There were basically given a probation, usually for as long as 3 years give and take. They are relatively well until towards the end when the disease will cause their bone marrow to fail, and they will need regular blood transfusion and treatment for infection. But ultimately they succumb. Around 7 years ago, a drug call Glivec was introduced. It revolutionise the treatment of CML almost overnight. Patients do not any longer need chemotherapy or other treatment with debilitating side-effects. The drug is taken orally, daily with tolerable problems. The main issue with it is the cost.

Malaysia in this sense should still count itself lucky because it still labelled as 'Third World Economy'. The drug usually cost RM 10000 per month, and the patient will need it for the rest of their life. It is almost impossible for us to afford it. Step forward the Max Foundation. It was given the task to distribute the drug at no cost to the patient by Glivec manufacturer, Novartis Pharmaceuticals to people like Malaysians. The responsibility for the patient is the promise to attend follow-up regularly, to monitor the response and to see if the disease has progressed despite treatment. The results of the monitoring are then collected and studied.

There are many people that are benefiting from this program - called GIPAP here in Malaysia. The foundation also host a patient support group for CML patient and caregiver, Max Family. I have been helping them out for many years as much as I can because I must say that they are very likely the most active cancer support group running in the country.

On a separate matter, as I mentioned in my entry last week, Malaysia can go along way in marketing itself as a conference and meeting hub. We got the facilities and the know-how. The multi-national companies will spend good money for these meetings and the clients that they invite in will have the spending power. That will only galvanise our economy. Go on Dr Ng Yen Yen. You know it makes sense.