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!

It's a good news indeed!

I felt great after I met my doctor yesterday. About my mouth problem, he told me not to worry, because infact it is a sign of GVHD and and since it is mild and limited, I will have benefit more than it could harm. On the other hand, I also developed disturbing eyes discharge. I thought it could be a conjunctivitis, but in actual fact, it is another common sign of GVHD. So far, I could tolerate the symptoms by being more caution on taking any food. The doctor also added anti fungal syrup for me to avoid oral infection.

My work? As I told before, I am more than happy to be back again even though it is not getting back to the normal routine. I haven't start doing surgery yet. Just being around and makes my self comfortable.

my mouth is 'burning'

Lately I noticed that I could not take spicy food anymore. (Frankly speaking, I have slowly started taking spicy food after 3 months post transplant and I didn't have any problem then.) Everytime when I take the meal, I could feel the burning sensation inside the mouth - the feeling like taking a handsful of chillies. After that, I just could not continue eating and it just killed my appetite. When I see inside my mouth, I could see white patches all over. No wonder everyone told me that I am so pale, when in actual fact my lips also turned whitish. Initially I thought it could be an 'oral trush' i.e. fungal infection, but when I had a chance talking to my colleague (pediatric oncologist) over a casual discussion, she thought it could be a sign of GVHD (Graft versus Host Disease). Apparently this GVHD is a good effect since it is an effect that could wash away residual cancer cell but not to the certain extent that it may harm the host (me myself). Anyway, during the last follow up I was warned about having this GVHD problem when the anti rejection drug was further reduced before completely cease next week.

I ll be seeing the doctor next week and hope he will say some good news.

my first day-working back again

Yesterday was my first day back to work after almost 7 months I was away. It was a great time meeting with all the people that I used to work with. Everyone also excited apart from being a bit surprised from the feature changes that I had now. My lack of hair, tanned skin ( I am not as fair and white as before- the effect of Glivec) from the effect of chemotherapy has made some of my colleague couldn't recognized on the first look.

But I am glad that they all as warm and kind and looking forward to see me more like I used to be. For the time being, as been reminded by my physician, to take it easy for the first 3 months, to limit the contact with patients. So I just hang around in the office and the most I went to the operating theatre just to say hello to the staff.

By the way, I am still coughing away from throat infection since a week ago and it seems a bit slow to recover. Hope it is not serious....