repeat blood test

I went for follow up the week after I came back from Korea. My blood sample also taken for repeat PCR test (to be sent to Singapore) and I hope the result that will come in next couple of week will show some reduction in the residual disease. Otherwise, there would be some change of plan, I guessed.

The doctor was happy when I told him that my appetite is getting better and my mouth is not as 'tight' as before after I was restarted on steroid. Hmm...talking about steroid, means that I will be bloated again, bug by the gastric uneasiness and labile mood. Anyaway, it is good that it can control the GVHD effect from overwhelming and do more harm to my body. I will be on monthly Immunoglobulin infusion for the next few months to boost my body immune.

My face is still full of acne like lesions from the GVHD effect but its okay. Oh yes, my weight haven't gone up yet. May be I should eat more and get back my 5 kilos, as been advised by the hematologist.

Jeju Island

I dropped by Seoul while waiting for my next flight to Jeju in the afternoon.

The quite town of Jeju City in summer.

I came back back from Korea yerterday. It was a great trip and Jeju is a nice and quiet place to stay. It was summer and the weather is still cold and windy. The meeting was good and I learned a few more new things there. My paper presentation was also great when they were impressed with my study. Anyway, I managed to find time to take a short trip to one of the tourist attraction the day after my presentation. We (me and my friends) took a bus from hotel and stop at this place Seongsan Ichulbong where the mountain rise peak located. It is located at the east of the Jeju Island and it took us one and a half hour to reach there by bus.

This mountain crater was once a small volcanic eruption under the shallow water and later became a small island which people come to see the spectacular view sunrise (of course I didn't manage to see since we reached there almost noon). We have to climbed 1.8 km up and that was so exhausting even after we have to stop a few times. It took us about 30-45 minutes but the view was so much rewarding.

We were welcome by this Uncle 'Dolharubang'

The crater at the mountain peak

The view of the town from the peak

'Hallabong', the special orange only planted in Jeju Island

We went back to the hotel by taxi since we were too tired to be in the bus again and I managed to catch the workshop of the meeting that afternoon.

last 2 weeks

Sorry for not writing in the blog for quite some time. Since I came back from Kelantan for that event, I was not that well. I used to have headache and dizziness. And after that I went to Shah Alam for my PTK course ( on job training course) for 8 days. The schedule was tight when we have to do a lot of assignments and most of them have be completed before we go back. Towards the end of the course, I was hit by a fever, cough and flu and to some extent I had to skip a couple of classes and the group discussion session. Anyway, its over.I have another long assignment need to be done and I have another 10 days before I need to pass it up.

Next week I am going to Korea when my scientific paper was accepted to be presented. I never expected it to be accepted anyway since I was invited to attend CML leader summit in Milan end of next month. I think that I should not miss this summit since it is a good place to meet those people from all around the world.

Oh yes, I met my doctor yesterday and after telling him all the increasing symptoms that I am having lately, he was a little concern that my GVHD efffect is showing more than limited that he want to see, and it has cause some quality of life issue. He advised that I should restart on steroid again. For your information, I continued to loose some more weight and I am as wasted when I was first strike by CML last 2 years ago. This is partly that my appetite is not doing good and I have a limited choice of food due to my mouth problem. I hope that this could be temporary as I am always wanted to be back to what I am..

another leap and reach out in kelantan

10th May was another leap for us. This year, our mission is to reach out more CML community outside of Klang Valley. HUSM which caters most CML patients from Kelantan and Terengganu was selected to be the event venue. Thank you to HUSM Hematologists for being so supportive in making this event another sucess for us and a good start for the local CML community.

The turnout was great and unexpectant despite half of them comes from some distance kilometres away. Thanks to the patients and their families. We learned a lot from the workshop, obviuosly we learned from them. We learned that the approach may be a bit different and tough but we believed we have done something worthwhile and this was showed by patients eagerness and how they are so looking forward for the next meet up!

I flew back on the same day in the evening and felt so tired but so much glad that it was another great great happening.

Next week our mission will continue in Penang and hope it will be another great leap...

another great event

Yes, we made another great Max history yesterday. This time, I was so much excited for two reasons. First, this was the first event that I was able to attend after the transplant and secondly, I was amazed with the turned out and how much passionate and enthusiastic they were during the workshops. The programmes went as planned togather with the surveys.

The subgroup during the workshop

My presentation

See how excited they were!

Thank you doctors

Thank you guys!!!

So much satisfied after it's over

another big event tommorrow

Tommorrow will be another big event for Max Family and the Max Foundation. So far, about 130 people are coming. That includes patients and their care givers, volunteers, doctors, nurses and of course us, the committee.

We also have 2 friends coming from out of this country. Angeli, the Max Foundation program officer from the Seattle office and Wirat, from Thailand Max Station.

I picked up both of them at KL Sentral last night and brought them to our Max Office before we went for dinner. Good to see Wirat again (he was here last Malacca event) and to meet Angeline for the first time. Hope both of you enjoy Malaysian stuffs....

the meeting is getting frequent

One of our 'teh tarik' session

For the past couple of weeks, me and my friends had more meetings. First we entertained our good friend, the Max Foundation head and secondly as part of our meeting and discussion before the next patients gathering event on 26th April.

On one of the day, we took the chance to have it in one of our couple's house since they haven't 'warm' their house since they shifted to their new home. We had a great meeting and of course great food after that.

At Shikin's house, I gave every member a small 'not so art' piece as my appreciation for their continous support

Dear friends, if you don't leap, you'll never know what it's like to fly. So keep leaping.......

now my eyes were drying

Not long after I started to have mouth problem (which is still burning in pain even when I am taking the least spicy food), I thought I was further stumbled with eyes problem. I noticed that my eyes get easily dried and they tend to stick togather especially when I get up from sleep (the usual symptom when you get conjunctivitis). I promptly left my contact lenses routine completely, in fear that it could worsen the symptom.

Last week I went to see the opthalmologist and after he did a test, it was a problem of tears production and probably from the GVHD effect. Now I have go back to my glasses and intermittently put eye drops to make me feel more comfortable.

The hematologist had told me before that I will have some limited chronic GVHD and to some extent will affect the quality of life. I guess, it is unpredictable when it come to how long that I will have this problem. Though, I am still not as bad since I can do most of the things that I used to do. Yeah, I have tried doing surgery recently and it was fine, except for some mild tremors.

the meet up again

before 'makan' time

before 'serious business' meeting

Pat has gone back to her country. I must thank for her visit and support in making every MaxFamily missions success!!

my Seattle friend visit

Today, I just fetched my good friend from Seattle. She is the Head of the Max Foundation and happened to be so close to us since her last visit during CML last event in Malacca. As she always promised, she flew all the way to meet us again, bringing more enlightening spirits for us to be as passionate as before, when the support group was first formed. I guess, I must get back to my support group as soon as possible and it is not that easy since I do not know where exactly to start. However, after we had a 'short brain storming session', I have a lot of reasons to speed up and gets going!