first workshop for 2010

Last weekend, MaxFamily had the first workshop of this year and we had it in Kota Kinabalu. It was a warm welcome from Sabahan people even though the weather was raining that day...

As we started, more participant came in. We started the session in a bit different way. Three patients were willing to make their testimony in front of audience and it really kicked off. I tried my best to moderate while keeping the ambience as cheerful as possible.

As usual, many of them expressed how grateful they were to have event like what they have just went through. Thanks to the doctor and the hospital staff in making this another useful event for the patients and their caregivers..

great meetings

There were 2 great meetings for 2 consecutive weekends for Max Family and definitely has added another great milestone to the group achievement.

First, for the first time our charity visit happened at kids orphanage home. Smiles and laughter filled the house especially during the coloring and games session. We were so touched knowing that all these kids has been deprived of love and we do hope that our presence has brought ' a sincere piece of love' to share with.

Second, yesterday, I met with a quite number of JB CML friends and caregivers. Successfully, at the end of the session, they have formed their own group. This has been Max Family's vision i.e. each region/ centers to have their own small local support group and to work independently in the future. This also will make them self-empowered at a group level and hopefully they will be able to create a sustainable CML awareness at their local areas.

It just reminded me on how me and a few others has started the group 3 years ago.....:-)

Oh yes, my lung function test has showed some improvement from the last test during which I had a bout of cough attack....

charity visit

I just got totally recovered from bad coughing episode which had left me in bad effort tolerance and breathless at certain times. The doctor advised me on longer leave so I could get better and enough rest. Now, I felt much, much better but still have to go slow on certain things and not to overexpose myself.

Having said that, me and my core group are ready for another significant event that we use to have around this time of the year... outing for a charity visit. This time, we feel that we should change the way we do things. We have plan to go to a centre that we think has possibly been least visited and taken care of from the public and we have found an orphanage somewhere around.

To anyone here who interested to contribute, do not hesitate to contact us at www.maxfamily.org

what is a support group

When I first got to know that I have a leukemia, I almost confused with my own reaction.To be exact, I did not know how should I react. Slowly I noticed that a lot of emotions started to come in... feeling sad, worried, afraid and anxious to know what was the next thing that could happen to me. Frankly, I did not turn into tears until I started to break the news to my love ones, one by one.

I presumed that I will be okay since I am myself a doctor, and thinking that I am still fortunate to be always in a situation where everything done on me was in the shortest time and most convenient possible. I never felt that I need to share with other people burdened with the same problem like mine. I knew that I could have control on myself, I could find answer to any issue and think I could walk this journey alone without trying to find somebody like me to share the problem along.

Until one day, someone and few others like me, sit, talked and shared things that we have in common... i.e. living with cancer. From then on, I started to realize that it could wasn't me that need helps, but out there , there is always somebody who desperately need to talk to someone. Someone whom they feel could understand their feeling and relate what they are going through.

Now, I have made my own conclusion. Share what ever piece of cake that you have, you are making someone happier. That is what support group meant for..... it is a place to give and to receive...

CML awareness month

My dear friend and followers, on October 1st, the Max Foundation open an awareness campaign to support CML survivors and each other around the world, by uniting people everywhere in the fight against cancer. Read on to learn more about how you can participate no matter where you live at:

www.themaxfoundation.org

summary after 2 years

Post Transplant Period: 2 years and a few weeks

Remission Status: 3 times molecular testing: Undetectable for BCR-ABL protein

Current Treatment Status: Still on Glivec and to maintain indefinitely until next good news?

GVHD Status: Since last attack on the lung, no major issues

Blood Group: Must have converted to A+ve (my donor) from O+ve

Weight: Back to pre morbid status

Height: No loss of height

Hair: Longer but not as thick as before transplant

Skin: Getting fairer again from Glivec effect.

Appetite: Better

Career: Back to work almost one and a half year now and planning for subspecialty training attachment next year abroad

Stamina: At par..but can be down after exerting too much

Experience: So much to share........

selamat hari raya!!!

latest follow up

Retrospective entry:

I went for follow up today and getting my 5th time of 6 months course of intravenous Immunoglobulin (antibody) to boost my immune status. Not to say that I never appreciated how painful to be poked a few times for IV line but getting 3 times attempt make me more understand how painful it was especially when I had it accidentally being poked on the sensory nerve on the wrist! It felt like being struck by an electric current...

Owing to my poor lung function performance (no improvement), the hematologist feels that I should be on further gradual tapering dose of steroid. And together with Glivec which may depressed the T cell (white blood cell), I must really caution during these time of potential H1N1 exposure. I was being reminded to take anti viral to Influenza should I developed flu symptoms.

 

blowing time again

I went for another lung function test yesterday. Blowing through the gadget a few times before getting the best result. My coughing which started the day before got a bit more after the test. I must have attempted trying to get the best blowing...

In the end, the result still not as good, from the previous test. Anyway, it was not a significant change, according to the respiratory physician. This result is so much important and my hematologist will really depend on this result as a guide to tailor the appropriate treatment and based on my progress...

july workshop

As now we have to ensure a regular workshop every 3 to 4 months, today we achieved another mission and as usual, we had another significant event in Ampang Hospital. After the introduction of the workshop, I had a chance to give a short talk to the audience on what is a support group all about. Why we should have one, whom it is meant for and how can everyone in the CML community can uphold the group. I also showed to them our 'handsome achievement' so far... after exactly 3 years it was first initiated, we had 16 workshops (not include today's), 2 outstation camps, twice charity ward visit, 2 international event, 5 issues of newsletter, our website and a blog. 

The event continue to follow with an art therapy, a session where we encourage audience to express themselves onto a piece of paper and share them with others in the hall.

During this workshop also, a few press media came to give a coverage. We do hope that we will better known to the public and make people aware of our presence in this challenging  world of living with leukemia.