The Joy of Sharing

I had the chance to participate in patient support group activities again last weekend, even though the initial plan was to have it in a park at TTDI, early Sunday morning rain soon put a dampener on things. But in true Malaysian spirit, we went for the obvious choice! We head for Mamak! Luckily there was one about 5 minutes drive from the original venue.

Nothing beats a nice the tarik and roti canai on a cold Sunday morning, and doing it in such company was even greater. Despite my schedule, Sunday morning before my ward round was just perfect timing.

We congregated just before 8, with my session kicking off by 8.30. It was mainly about Chronic Myeloid Leukaemia (CML) and the new patients who turned up took the opportunity to find out a bit more about their disease as well as listening to the stories and experience of their fellow sufferers. Great session and I hope that those who turned up on that Sunday morning benefited. And I would definitely do it again if invited.

A one hour session although the participant was not yet done. I bid my goodbye and left for the hospital. I was able to start my rounds by 10 am. Great time keeping!

Photo courtesy of the Max Family.

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.

Morning Session

The sight which greeted me that Sunday morningFinally it came my turn to participate in the patient support group discussion. My topic was to facilitate the discussion in a small group in Malay medium. Yes, finding the right terms and pitching your message at the right level can be tricky at times. You don’t want to appear too overbearing, but at the same time you want to move the audience forward in terms of their understanding of their disease. The fact that some of the participants were newly diagnosed, compared to some who had been coming to these events for the past few years, finding the happy medium was a challenge. But there was where the fun lies.

Ms Tan Pei Lin, Pharmacist from UMMCThe session started very early for a Sunday morning. So kudos to all the participants. We kicked off with an overview of how best to take their medications - we were talking about Glivec here. It was ably delivered by our own UMMC’s Clinical Pharmacist, Ms Tan Pei Lin. She has only been dealing Glivec for me in the last couple of months, but has been with us for a lot longer. The talk was very easy to follow, and judging from the response from the crowd, it was very well received. My only comment to the organiser was we should have had the Q&A session straight after the talk rather than pushing on with the next talk. By allowing some questions, things would have been still fresh and discussion could’ve been more focus. If we wait until later, the momentum may have been lost.

Dr Xavier from Hospital AmpangThe next talk was by Dr Xavier Sim from Ampang Hospital. His talk was more clinical-based, mainly about the molecular side of the disease and the importance of compliance to Glivec. Some of the points were quite technical for the audience but he took them to task to explain those points in details and in laymen’s term. Yes, it was way above the head of some audience, while for others it may have been merely a revision, stressing the point of the difficulty in finding the right pitch. I was pretty sure however that there were many messages for the audience to take home. It will at least stimulate some curiosity in them for the next session, when the group were broken into smaller ones, mainly into Malay, English and Mandarin medium.

I was taking notes of course ... while updating the twitter on @haemummc The souvenir, a hand-painted artwork by Encik Sahimi, a CML patient and founding member of MaxFamilyIt took a while for the discussion to get going but when it did, oh boy! Pei Lin, the Pharmacist had to move between the three group to take on some more direct question concerning drug interaction and similar issues. Before we knew it, it was already mid day. We then had the customary photo session and the obligatory handing over of souvenir. I had to start my journey back home after lunch, and it was already raining heavily then. The rest of participants from KL wold be taking a bus at 2pm. I made it to KL by 5pm, stuck in the jam after Seremban. I wonder how the rest of the group got on.

Talk in Ampang

Yesterday afternoon, I was invited by my colleague from Hospital Ampang to participate in a public forum on Multiple Myeloma. Apart from myself, they invites a Nurse from Dana-Faber Cancer Center in Boston to address the questions from the partiipant about living and coping with the disease.

The session started out with a short talk on myeloma by yours truly all in Malay. We then took question from the public ad that went on for a good half hour. At the end we discussed about the need for a patient support group that were pretty common abroad. It looked that there were some interested party in there. Hopefully something will come out of it similar to the MaxFamily for CML.

We highlighted that part of the reason why cancer parietal support group were not very strongly supported here was the fact there there was stigma attached to the diagnosis of cancer in out society. Patient once labelled as having cancer often felt shame and wondered if it was punishment from God. Worst so, this view was reinforced by the people around them. These people ended up retreating into a shell and suffered by themselves.

I was pretty certain that part of challenge would be to chance the patients perception of their disease, overcome the stigma, empower them and make them confident. Only after the inner battle were address, they can start changing te public perception of their predicament. The problem also held true for other non-cancer conditions such as lupus and multiple sclerosis. Even diabetes support groups locally struggled atthe beginning. I guess we Malaysian still have perception that having any disease was a direct consequence of punishment from God, be it cancer, lupus, diabetes. Even my Mum-in-law once said that when she was bringing up her children re my wife, they never had fever until they attended school. Since out children were both asthmatics, bearing in mind that Irfan was just discharged from hospital, the infections that they regularly picked up were due to us not looking after them properly, and even due to us 'tak buat baik' to other people. I realised that those statements should be taken with a pinch of salt, the point I was making was generally we Malaysian were wary to people having illness and all illness must always have a reason behind them.

Frustrating I know but those were one of main hurdles we had to jump in order to make any support group successful. Over the years in Malaysia, I was involved at helping up the beginning of support group for Immune Thrombocytopenic Purpura (ITP), Chronic Myeloid Leukaemia (CML), lymphoma and now myeloma. So far, only the CML group really took off. It helps when most of the members were youg and relatively fit and vocal. I would be happy if the myeloma was half as successful as their CML counterparts.