Thursday, April 30, 2009

Day +1030 : Attending church leadership retreat

I am fine today.

I am attending our church leadership retreat at Fraser Hill starting from today to Saturday. We engaged a pastor from Hong Kong to lead the retreat.

We had our church at Fraser Hill twice, but that was before I was sick. I am visiting Fraser for the first time post bone marrow transplant :-)

May God bless our trip :-)

See you next post :-)

Wednesday, April 29, 2009

Day +1029 : A celebration

I am fine today.

Following the launching of Esteem 7.5 software on Saturday, we are officially distributing this new version starting from today.

As a celebration of achieving tremendous technology breakthrough in this release, we went for a dim sum lunch at Tai Thong Imperial Palace at Puchong.

Though we used to frequent the restaurant for lunch, this is the first time ever we had dim sum there. The restaurant is offering 50% for some selected dim sum and 20% discount for the rest.

This is the second time I have dim sum post bone marrow transplant. The dim sum tastes good :-)

Tidbit
Another one
Some of the dim sum we had
See you next post :-)

Tuesday, April 28, 2009

Day +1028 : Labourious in vain(一场忙碌一场空)

I am fine today.

I was determined to invest in Amanah Saham Wawasan (ASW) but coincidently, I had to do my post-transplant follow-up yesterday. In order to be an early bird, I went to UH to draw blood as early as 6:00am. I got a very good queue number and I managed to reach Puchong at 8:30am after drawing blood.

I saw many people queuing up at Maybank and CIMB to purchase ASW. I went to RHB bank in IOI mall and found out that they were about 20 people queuing there; relatively less people compared to Maybank where the queue had already extended to Public bank at 8:30am.

However, I still felt that the queue was too long at RHB in IOI mall. I went to RHB branch at TESCO about 8:45am and I was number 3 in the queue :-) While Maybank opened at 9:15am, this branch would only open at 10:00am but I was quite confident that I would be able to purchase the fund successfully.

However, we were told that the system hanged when the bank opened. The queue was getting longer – at least 60 people at 10:00am. No transaction could be done and people were just waiting there. I waited for about 45 minutes and left as I need to attend an interview session in the company.

I still hope that I could purchase the fund when I came back from UH in the afternoon, but Richard informed me the non- bumiputera allocation was sold out at 12:05pm :-(

For the sack of investing in ASW, I uplifted my FD prematurely, opened a saving account in RHB and transferred money over there, running here and there, waiting patiently for my turn, just hoping of getting a better return, but despite all these efforts, failed to deposit a single cent into ASW :-(

In fact, I planned to open 5 accounts yesterday – one for myself and one for each of my children. The outcome was zero account.

So this is really labourious in vain(一场忙碌一场空). I believe many people experienced the same :-) At least we try!

See you next post :-)

Monday, April 27, 2009

Day +1027 : Follow-up at haematology clinic

My Blood Count Today: - Readings in square bracket [] are result from previous test.

[Compared to the result on 2, April 2009 – ColumbiaAsia]
Red Blood Count (HB) = 144[157] (Normal 130-180)
Platelet = 210[132] (Normal 150-450)
White Blood Count (WBC) = 4.4[3.5] (Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 2.024[0.9] (Normal 1.5 - 8.0)

[Compared to the result on 2, March 2009 - UH]
ALT = 66[88] (Normal 30 – 65)
AST = 42[57] (Normal 15-37)
GGT = 36[82] (Normal 15-85)

I am fine today.

The blood count results have improved significantly compared to results on 2, April 2009. All counts are within the normal range now. Dr. Gan said the heavy drop of platelet, white blood count and ANC of last blood test might be due to viral infection, as I was sick that time.

The liver function test result also improved and all readings are almost in the normal range.

Dr. Gan said my lung condition might due to chronic GVHD. However, she would not start any treatment until she sees result of the high resolution CT scan scheduled on 18 June. She referred my lung condition as BOOP/BO instead of Bronchioectasis, terms that I came across the first time.

Bronchiolitis obliterans, or Constrictive bronchiolitis, one form of which is called Popcorn Workers' Lung or popcorn lung, is a rare and life-threatening form of non-reversible obstructive lung disease in which the bronchioles (small airway branches) are plugged with granulation tissue.

Bronchiolitis means inflammation of the bronchioles and Obliterans refers to the fact that the inflammation of the bronchioles partially obliterates the airways. [Wikipedia]

Bronchiolitis obliterans organizing pneumonia (BOOP) is an inflammation of the bronchioles (bronchiolitis)[1] and surrounding tissue in the lungs. BOOP is often caused by a pre-existing chronic inflammatory disease like rheumatoid arthritis. BOOP can also be a side effect of certain medicinal drugs, e.g. amiodarone. [Wikipedia]

I found a article that describes the possible post-transplant lung issues which include BOOP/BO. The article can be accessed here.

The difference between BOOP/BO, according to the article:

BO is generally a disease of the small airways, where the small airways become narrower presumably due to GVHD, to the point that airflow is limited through the airways. On lung function testing, this appears as an obstructive pattern. When detected, BO is usually severe and generally irreversible. The goal of therapy with immunosuppression is to prevent progression. Unfortunately, BO is often "silent" and clinically unnoticed until it is severe. BO is generally not detectable using standard chest X-ray or CT, but can be detected using a high resolution CT scan. Respiratory infections can also cause airflow obstruction, so patients generally need a bronchoscopy to make sure an infection is not present before initiation of therapy. Therefore, our efforts here have focused on how to identify patients earlier, so treatment may be started to stop the progression of BO before it becomes severe. BOOP is an inflammatory disease that involves the small airways and the alveoli, the gas exchanging units in the lungs. Most commonly, this results in a restrictive pattern on lung function testing, which means that the lungs cannot expand well. BOOP is detectable using a CT scan or chest X-ray. However, because it looks like pneumonia, additional studies such as bronchoscopy and lung biopsy are usually necessary to confirm the diagnosis. BOOP differs from BO in that it is very responsive to immunosuppressive therapy. Most BOOP cases are completely reversible, although a small percentage of the population will have steroid resistant or dependent BOOP.

It is not sure which one do I have at the moment but I believe that my symptom is more toward BOOP as I can feel that the elasticity of my lung is greatly reduced – very restrictive and couldn’t expand well. If this is the case, then there is hope for complete recovery, perhaps with the steroid (Prednisolon) treatment again.

When doctor examined my abdomen, she noticed that my skin is getting very tough. This might be an indication of GVHD too.

I also sought her advice whether I should go ahead with the pneumonia and flu vaccinations as suggested by the lung specialist. She said that it is not advisable for one who has active GVHD to have vaccination. Since it is not sure whether I have active GVHD at the moment, she advised me to have the pneumonia vaccination first.

I will most probably do the vaccination during my next follow-up at haematology clinic which is scheduled 4 weeks later.

See you next post :-)

Sunday, April 26, 2009

Day +1026 : Fourth sermon after bone marrow transplant

I am fine today.

By God grace, I delivered the fourth sermon post bone marrow transplant. The title of the sermon is “God is my hope”.

The sermon is based on Romans 15: 13 - “Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the Holy Ghost,” which you will find under this blog title.

In the sermon, I shared some of my Leukaemia experience and how God of hope filled me with joy and peace in difficult time.

Some time, God bless us through suffering. Without diagnosed with Leukaemia and went through the aggressive treatment, there is no way for me to share the sermon.

“And though the Lord give you the bread of adversity, and the water of affliction, yet shall not thy teachers be removed into a corner any more, but thine eyes shall see thy teachers:” Isaiah 30:20

「主 虽 以 艰 难 给 你 当 饼 , 以 困 苦 给 你 当 水 , 你 的 教 师 却 不 再 隐 藏 ; 你 眼 必 看 见 你 的 教 师 。」以赛亚书3:20

If you would like to have the sermon script or audio (haven’t checked the quality yet), please let me know, I should be able to email a copy to you. Please note that it was delivered in Mandarin.

See you next post :-)

Saturday, April 25, 2009

Day +1025 : Esteem 7.5 launching

I am fine today.

We launched version 7.5 of our flagship software – Esteem 7.5 – at Armada Hotel today. More than 200 engineers attended the event.

Esteem 7.5 is a total integrated solution for the modeling, design, analysis and detailing for reinforce concrete structure. Many structural consultant firms in Malaysia are using the software due to its user-friendliness and capabilities.

To find out more about the software, you can visit our website here.

The backdrop of the seminar
Presentation
Audience
My brother, Richard, is demonstrating the software
Tea break


Buffet lunch - my portion :-)
See you next post :-)

Friday, April 24, 2009

Day +1024 : Now heaven is brother Teh’s home

I am fine today.

I telephoned brother Teh this evening with the intention of finding out how is he doing as we didn’t talk to each other for quite some time.

The wife picked up the call.

“He returned to heaven November last year,” the wife told me.

I was quite surprised to find out this as he was doing quite well after discharging from hospital June last year. He even visited me while I was warded June last year due to infection.

His wife told me that he was doing well and was just about to go back to work before he suddenly fell sick and admitted to hospital with high white blood count last November.

On the fourth day he was admitted, he fell asleep after having breakfast. Initially, the wife thought that he was having a good rest, but when she wanted to wake him up to inform that she was going to office, she failed to wake him up.

A CT scan revealed bleeding in the brain on multiple sites and he passed away in the evening.

“Go in peace,” the wife told him. Her hope in Christ that he is returning to heaven, our eternal home, made her strong enough to tell her husband that he could go in peace.

John Angell James (1859) wrote about this Christian hope,

It goes with us where all other subjects leave us—to the entrance of the dark valley of the shadow of death; and when every other light is extinguished, furnishes us with the only lamp that can guide us through the domain of death, to the realms of glory, honor, and immortality. Thus it accomplishes what the human understanding never could achieve, by solving the sublimely tremendous problem of man's existence beyond the grave.

The shadows of evening are gathering fast and thick around me, and I find it most consoling, on the border country of the world unseen, to go forward into what would be otherwise a dark unknown, guided and cheered by a hope full of immortality.

Mr. Teh was a faithful reader of this blog. I wrote quite a lot about him on the following posts:

Day +721 : Update on my two friends
Day +661 : Visiting friends
Day +656 :Follow-up
Day +603 : Pray for a friend (1)
Day +604 : Pray for a friend (2)
Day +371: Another car hijack.
Day +167
Day +166
Day +165
Day +164

May he rest in peace!

See you next post :-)

Thursday, April 23, 2009

Day +1023 : Thank you!

I am fine today.

I asked a church member to help me design a thank you card to commemorate my 1000th day post bone marrow transplant which fell on 31st March 2009. 

I have a blog entry regarding this :  Day +1000 : A Thousand Days Only Possible With You!

I would like to present this card to you now :-)  (Click on the card to have a larger view)


See you next post :-)

Wednesday, April 22, 2009

Day +1022 : Sold out incredibly fast

I am fine today.

I uplifted some fixed deposits this afternoon and intended to invest some more into ASM under my wife’s account. But we were told that the allocation for non-bumiputra was sold out by Maybank staff. This indicates that people still have a lot of money in hand :-)

Based on Fortune Sense estimation, it would take 6.5 days to finish the allocation but it finishes in less than two days only. My third sister even told me that it might take a few weeks to finish the allocation. With this, I was so confident I would be able to deposit some more into this fund, and uplift the fixed deposits without checking with Maybank first.

I only found out today that there is quota on the ASM allocation.

Quote from nstonline:

Half of the ASM units will be for Bumiputeras, 30 per cent for Chinese, 15 per cent for Indians and five per cent for the people of other races. ASM units reserved for any race that remain unsold after July 20 will be open for sale to others.

So Fortune Sense estimation may be applicable to Bumiputeras only.

Since I had uplifted the fixed deposit already, I will try to invest in Amanah Saham Wawasan which is due to open next Monday.

See you next post :-)

Tuesday, April 21, 2009

Day +1021 : Purchasing Amanah Saham Malaysia (ASM) unit trust fund

I am fine today.

My third sister called yesterday advising me to invest on ASM which will be offering from today onward 3.33 billion units with RM1 per unit. Each investor is entitled to buy a maximum of 20,000 units.

The fund gives a return rate range from the lowest 6.25% (year 2009) to the maximum 7.80% (year 2001 and year 2008).

Comparing to fixed deposit, the return is still very good :-)

If people got a lot of money, the offering will be sold out very fast. So there is no guarantee that one could purchase the units successfully.

This is the first time ever I purchase this fund. As such, I need to open an account. Richard told me that in fact I could open an ASM account at post office first and then deposit the money into the account through Maybank where my money is. Maybank is very slow in opening the account but relatively fast in handling the purchase of additional units for those who with account.

After fetching Adriel to the kindergarten, I stopped by at the post office in Tesco Puchong at 8:30am on the way back, but there was no one there. I saw a notice saying that ASM transaction will only start 9:30am onwards. After seeing this notice, I decided to open the account at Maybank as it started to carry out ASM transaction at an earlier time, which is 9:15am.

When I reached Maybank, there were about 20 people queuing there. There were two counters handling ASM transaction only, one for those who needs to open account and the other one for those who already has an ASM account.

I was given a queue number of 5014 which meant that there were 14 people without ASM account in front of me.

Worrying that I might need to wait for too long before my turn, I went to the post office at Tesco Puchong again. The post office staff told me that they won’t be able to check the availability of allocation online; as such there was no guarantee that the units that I would like to purchase would be processed successfully. It looked like they had to have offline transaction :-(

I went upstairs to see if RHB branch in Tesco handle ASM transaction, and gladly found out that it did. The branch opened at 10:00am and I was the first one in the queue. So this is a good place to handle ASM transaction :-) I opened the account with RM100 initial deposit and then rushed back to Maybank.

I got a queue number of 3077 and the ASM counter was serving 3029. This means that I need to wait for at least one and half hour before my turn.

It was very fortunate that I met my neighbor who had an excess queue number, 3033 :-) With this queue number, I managed to purchase additional units in about 20 minutes.

Another trust fund, Amanah Saham Wawasan (ASW), which yields a higher return rate, will be offering 2 billion units next Monday. I plan to invest into this fund too :-)

According to Fortune Sense, the ASW offering will be fully subscribed in 1 day while ASM will only be sold out in 6.5 days. So if you would like to invest in ASM, there is still plenty of time for you to do that.

Quote from Fortune Sense:

Just for calculation purpose, the RM 2.5 billion Sukuk Simpanan rakyat with the maximum allowed per investor is 50, 000 units sold out in 2 days. The Amanah Saham Malaysia (ASM) with 3.33 billion units is estimated to be fully subscribed in 6.5 days.For the Amanah Saham Wawasan 2020 (ASW 2020) non bumiputra portion, 0.98 billion (49%) should be fully subscribed in 1 day. Anyway this is just an estimation by mathematics calculation, it is still depends on the response of the people after RM 2.5 Billion Sukuk Simpanan Rakyat.

See you next post :-)

Monday, April 20, 2009

Day +1020 : Aaron and Tom and Jerry

I am fine today.

My niece, Nga Ming, purchased a Tom and Jerry t-shirt for Aaron few months ago. Aaron liked the t-shirt so much that he wanted to wear it day and night. Once the t-shirt was washed, he would like to wear it again before it was dried :-(

He was reluctant to wear pyjamas and would like to sleep with his Tom and Jerry t-shirt at night. We had to change for him only once he fell asleep.

To make our life easier, we asked Nga Ming to purchase another Tom and Jerry t-shirt for him, exactly the same as the first one. With this, Aaron could wear Tom and Jerry t-shirt all the time.

We bought for him another Tom and Jerry shirt yesterday. Though it was of different design, he said he liked it very much too.

Now he has three Tom and Jerry shirts :-) He is free to wear them anytime.

See you next post :-)

Sunday, April 19, 2009

Day +1019 : Happy birthday, Aaron!

I am fine today.

We celerated Aaron's three-year-old birthday today. His actual birthday is tomorrow but for convenient sack, we had the celebration today.

Remembering that he was born while I was doing my fourth round of chemotherapy three years ago, I praise God for granting me life to witness his third birthday :-)

We had lunch at McDonald, Tescho Puchong as part of his birthday celebration.

The restaurant was very crowded, we couldn't find a table that could fit all of us. So we divided our group into two tables.
Daniel and Joseph
Aaron is enjoying French Fries
Now let me drink the Coke
I enjoy eating Double Cheese Burger too!
Too big for me
Adriel is enjoying chicken nugget

We ordered McValue Lunch which cost RM5.95 each. We paid RM50 only for eight person, which is considered quite economical :-)

A McValue Lunch consists of :

A Double Cheese Burger
French Fries
And a drink
Instead of Double Cheese Burger, we can have :

Chicken Burger
6 pieces chicken nuggets, or fish fillet burger which we didn't order
At night we have another celebration at home.

Preparing for the celebration
Singing happy birthday song
Blowing candles
Birthday cake
Birthday eggs
Mee Sua again - with the "giat frozen yam" :-)
Eating Mee Sua
The noodles is too long for me, I have no choice but to use my hand :-)
Lets take a family photo
See you next post :-)

Saturday, April 18, 2009

Day +1018 : Happy birthday, Joan!

I am fine today.

Joan is my brother’s, Richard, daughter. We celebrated her 3-year-old birthday after the cell group today.

The beautiful birthday cake chosen by Joan
Birthday eggs
Chicken soup
Mee Sua - the Mee was manufactured by my former class-mate in Sawarak. My sister brought the Mee here. The texture of the Mee Sua is extremely good.
The drink
The birthday girl - Joan
Richard's family photo
Lets blow
The children
Busy eating
God bless Joan!

See you next post :-)

Friday, April 17, 2009

Day +1017 : Follow-up : Asthma Clinic - All is not well in the lung

I am fine today.

I have my Asthma Clinic appointment today. The appointment was scheduled 2:00pm on first time first serve basis. Because I needed to take a chest x-ray in the radiology department, I went to UH as early as 11:30am. The traffic was quite clear and I managed to reach UH at 12:00am.

I got a general queue number in the general clinic first before rushing to the radiology department to take x-ray. After registering at the radiology counter, I rushed for my lunch. When I came back about half an hour later, it hadn’t reached my turn yet.

The registration for Asthma Clinic opened at 1:00pm, but the problem was that I wasn’t called for chest x-ray. In order to get an earlier queue number to see lung specialist, I rushed to the general clinic to register for Asthma Clinic based on the earlier general queue number. I got a queue number 8006, which was quite an early queue number.

After that, I went back to the radiology depart for my x-ray. I managed to get the chest x-ray done at 1:40pm.

The chest x-ray taken today was basically the same as the previous one. The right pleural effusion remained. After asking a series of questions and then analyzing the chest x-ray, the lung specialist pointed out the right costophrenic obliteration (right lower tip of the lung was blunted) might not be due to the pleural effusion (fluid retention). It might be due to pleural thickening.

Due to the way I cough, the doctor said that I might have bronchiectasis.
Bronchiectasis is a disease that causes localized, irreversible dilation of part of the bronchial tree. It is classified as an obstructive lung disease, along with bronchitis and cystic fibrosis. Involved bronchi are dilated, inflamed, and easily collapsible, resulting in airflow obstruction and impaired clearance of secretions. Bronchiectasis is associated with a wide range of disorders, but it usually results from necrotizing bacterial infections, such as infections caused by the Staphylococcus or Klebsiella species or Bordetella pertussis. [Wikipedia]
He saw some dilation of the bronchial tree on the chest x-ray and even on the last thorax CRT scan that was done middle of last year.

The dilation of the bronchi tree causes the sputum to be accumulated easily in the lung which results in the blocking of airway. The accumulation of the sputum also increases the change of lung infection. The blockage of the airway might be the reason why I always felt short of breath :-(

The doctor asked me to do a spirometry test to measure the lung function. The test result ruled out the possibility that I have asthma. So the diagnosis that I have bronchiectasis is now more firmed.

However, to confirm the diagnosis, I still need to have a thorax CRT to see the condition of the lung.

Instead of giving me cough syrup to stop the cough, he asked me to cough as much as possible to discharge the sputum in the lung. In order to soften the sputum to increase its mobility so that it can be coughed out easily, he prescribed me an antibiotic called erythromycin for three months.
Therefore, in addition to penicillin, I need to take additional drug from now onwards.

Another measure to loosen the sputum is to use an instrument called Acapella which cost about RM300. It is a type of oscillating positive expiratory pressure devices that once blew will create oscillating pressure that would loosen the sputum. Doctor prescribed the instrument but I have yet to decide if I want to acquire the instrument.

To prevent infection due to bronchiectasis, doctor advised me to undergo two types of vaccinations: Pneumovaccine and Fluvaccine to protect me against pneumonia and flu. The Pneumovaccine has to be done 5 yearly while the fluvaccine has to be done annually.
The cost for Pneumovaccine is RM148 and the cost for Fluvaccine is RM45. However, I will be able to claim back the cost from government.

I will consult my haematologist first before doing the vaccinations.

My appointment for CRT is on the 18 June which is two months from now :-( And I will be seeing the lung specialist two weeks after the CRT.

Erythromycin
Acapella
See you next post :-)

Thursday, April 16, 2009

Day +1016 : Alice in Cancerland

I am fine today.

I would like to share with you an article written by Keruah Usit and published on Malaysiakini yesterday. It is a story of how a young Penan mother in Sarawak was deprived of basic healthcare, and the author believes (I believe too) that the rural poor, Iban, Bidayuh and Orang Ulu in Sarawak, Kadazan, Dusun, Murut in Sabah, plantation workers and Orang Asli in the Peninsular suffer the same. 

I obtained the author permission to post his entire article here. In replying to my request, he introduced to me a few organizations which deserved our support. Please visit their websites and support them if you can.

The mail from the author.

Dear David,

I am happy for you to post the story on your blog. All the best in your continuing recovery from leukaemia.

Please encourage your friends to support organisations such as Mercy Malaysia in Miri (www.mercy.org.my) and Medecins Sans Frontieres (www.msf.org). Please do have a look too, at a Sarawak blog, www.hornbillunleashed.wordpress.com - excellent writing and good links.

Warmest regards,

Keruah Usit

And now the story – Alice in Cancerland.

Alice was already a young mother when she discovered she had cancer of the nose. She was in her mid-20s, the target age of trashy magazines and ‘natural-looking cosmetics’. She had a shy smile and dimples in her cheeks, and she had passed on her traits to her two daughters.  

Alice’s husband Abel, a hunter and farmer, loved her, and, unlike many other husbands, listened to her. Her small children hung on to her every word. 

Alice lived by a river in rural Sarawak, 300km (as the helicopter flies) from the nearest hospital. She had noticed a swelling growing around her left eye for six months, but she could not afford the RM200 trip to Miri Hospital.  

After all, Alice was a young Penan mother with no cash income to speak of. Her parents had been born in the rainforest. Her grey and stooped father still went out hunting, carrying a blowpipe and a machete, with a surprising spring in his step. 

Alice loved her Penan community; they were close-knit, ready to share, and they looked after their neighbours’ children as a matter of course. Alice, one of 15,000 Penan forest-dwellers - like many other indigenous people in Sabah and Sarawak, and the Orang Asli in the Peninsular - depended on the rainforest, not for eco-tourism and adventure, but for life itself. 

Alice had never come across a RM50 banknote, but she had led a good life, until she grew a tumour the size of an egg around her eye, and suffered continually from a blocked nose. She was alarmed. She walked an hour to the closest rural clinic, a standard government-issue, ancient, wooden house on stilts.  

‘We can’t pay you to go to Miri’

The nurse there, a girl her own age, advised her to go to Miri Hospital.

“We have no budget allocation to pay for you to travel to Miri,” she told Alice. The nurse repeated the same mantra, week after week, to all her patients needing hospital care.  

Alice knew that patients were only flown to Miri by helicopter in emergencies, such as obstructed labour. Even then, the helicopter service was unreliable – it had even ceased altogether, for an entire year, without any explanation offered to the nurses or the villagers.

When the health minister at the time, Dr Chua Soi Lek, was asked why the Sarawak helicopter ‘medical evacuation’ service had been disrupted, he was quoted by several newspapers as saying the contract had been awarded by the Finance Ministry, not his own ministry, to a company that owned no aircraft. The well-connected owners of the helicopter company, as nimble as a dodo, were still paid handsomely as stipulated in the contract. 

 Eventually, six months after the onset of the swelling, Alice met four visiting doctors from Kuching’s Sarawak General Hospital. The doctors had taken leave and had raised their own funds to visit several remote villages, including Alice’s.

A kind doctor from Kuala Lumpur, in her 20s like Alice, had diagnosed that the young Penan mother was suffering from nasopharyngeal carcinoma. She accompanied Alice and her husband, Abel, on the long journey to Miri. 

Alice had never been to the loud, alienating oil town of Miri. She was terrified. In Miri Hospital, the ear, nose and throat doctor took a biopsy from her nose. She waited almost a month for a CT scan appointment.

The scan results were disheartening: the cancer had already eaten its way into the base of her skull. Alice was subsequently sent to Kuching for radiotherapy and chemotherapy.

She was, once again, in a strange place, but at least Abel was with her. Abel spent his nights sleeping on a hard armchair in the visitors’ room near the cancer ward. Alice shared her trays of food with him.

When a kind nurse was on duty, Abel would receive his own portion of food. Alice and Abel preferred their own harvested sago pith, or na’o, to the clods of grey rice served up on grey plastic trays, but they persevered with the treatment. 

After six weeks of radiotherapy, chemotherapy, and unpalatable food, the swelling around Alice’s eye vanished. She started to eat almost normally.

Local volunteers drove her around town, urging her to try kolok mee, Kuching’s famed noodle dish. Alice ate noodles for the first time in her young life – and liked it almost as much as na’o. Her winning smile returned.  

She had never seen the sea

A doctor took her to Santubong beach as Alice had never seen the sea. Alice was delighted, feeling the sand beneath her bare feet, laughing and skipping away from the water as the waves swept in, almost dancing on the shoreline. 

Alice and Abel walked among the trees near the beach. They murmured to each other, pointing out plants, those familiar and those less so, to each other. They wandered hand in hand along the concrete path beneath the quiet canopy, longing for their own forest, the forest they knew so well, far away. 

Soon afterwards, the young Penan couple were sent back to Miri for Alice to have five more cycles of chemotherapy, one dose a month.

The doctors did not offer Alice and Abel contraceptives – an awful oversight, you might say, and less rare than you might think. Alice became pregnant. The doctor advised Alice to have an abortion. She recovered from the procedure, but her chemotherapy was delayed for several weeks as a result.  

Alice and Abel were allowed to visit their small children on two or three occasions – you can imagine the joy of those embraces, and the meals of na’o and wild game shared. 

But Alice dreaded each return to the urban hospital. There was the occasional encounter with a vicious nurse or accounts clerk, berating her and Abel for not paying their hospital bills. She would explain, head bowed, quietly and patiently, that she could not afford the bills.  

Most Malaysians know little of the lives of indigenous people. This has not been helped by the government hype surrounding announcements of Internet access in rural communities: ‘e-jekitan’, ‘e-bario’ and the like. One might be led to imagine the Penan carrying iPhones through the forest, tracking wild boar using GPS.

There was also hardship for Alice, when she had to endure nausea, caused by the inexperience of her doctors in the use of potent medicines such as platinum. Her doctors were unaware, and a few doctors were perhaps unperturbed, that Alice’s retching could have been prevented easily by giving her one of the newer anti-histamines.  

Alice never complained about her difficulties, and her doctors never learned to ask her about her symptoms – in Penan, or any other language.  

Home at last

Yet Alice and Abel stayed the course. Alice’s cancer was in remission, and she was able to go home at last. She returned happily to caring for her daughters (right), and began sending her older daughter to school, walking an hour to school with the little girl, and walking an hour back home after classes. 

But the cancer returned two years ago. Alice was offered chemotherapy again, for palliation, but she declined politely. She preferred to stay at home with her children. She talked it through with Abel. To Abel’s credit, he supported her.  

Alice took to covering the swelling around her eye and in her neck, with a towel. Towards the end of her life, she found it painful to swallow. A volunteer doctor visiting her village gave her pain relief, and some comfort.

Alice understood she did not have much time left, and she lived with dignity. She remained in her small house with Abel, her parents and her children. She cooked for her family and weaved baskets by daylight and under the timid light of a kerosene lamp at night.

She died at home a year ago. Abel, with the support of Alice’s parents, is bringing up the young ones. 

Alice’s story, of deprivation of basic healthcare, is echoed all over Sarawak, Sabah and parts of Peninsular Malaysia. Alice never had the benefit of a quick diagnosis. Early treatment of nose cancer often leads to complete cure. 

Our national healthcare system, flawed though it is, does reach out to many women like Alice, but access to basic healthcare remains desperately unequal, and under-funding is painfully obvious. 

Alice and Abel never had the opportunity to have their voices heard. The rural poor, Iban, Bidayuh and Orang Ulu in Sarawak, Kadazan, Dusun, Murut in Sabah, plantation workers and Orang Asli in the Peninsular suffer the same enforced silence.  

Urban Malaysian voters, on the other hand, have finally found their voice, and have become increasingly vocal in the last 12 months. Our political institutions have had no choice but to respond, albeit in a distorted and confused way. But will the voices of our dispossessed rural population ever be heard? 

May Alice rest in peace!

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KERUAH USIT is a human rights activist - anak Sarawak, bangsa Malaysia. His ‘The Antidote’ column, which will appear in Malaysiakini every Wednesday, is an attempt to allow the voices of marginalised people to be heard all over Malaysia. The writer can be contacted at keruah_usit@yahoo.com.


Wednesday, April 15, 2009

Day +1015 : I like you, 1 2 3 4 5 :-)

I am fine today.

This was how Aaron described how much he liked his mother :-) He would show his fingers while saying this, from a thumb which is one to a big five.

We can interpret “1 2 3 4 5” as “very much” but he knows how to say “very much”. Then why he chose “1 2 3 4 5”? I believe “1 2 3 4 5” is more than “very much”, it means “full” :-)

If you need to describe something more than “very much”, “1 2 3 4 5” could be a good choice :-)

See you next post :-)

Tuesday, April 14, 2009

Day +1014 : A big fish from Miri :-)

I am fine today.

My wife’s brother-in-law, James, and his eldest son, Hu Chong Siang, came to visit us from Miri last night. They brought us a very big grouper. James told me that the fish was captured using fishing rod and thus no preservative was being used. Therefore it should be very healthy :-)

James was accompanying his son to register for University Foundation Programme (UFP) at AIMST University at Sungai Petani. His son scored 10A1 and 2A2 in his SPM exam. He will be studying medicine after the UFP.

The fee for one year foundation course is RM1,8000 and the medicine course cost RM50,000 per year. Therefore, the total course fee for one year foundation course and 5 years medical course will be RM26,800, which is considered quite cheap compared to other local institute such as IMU. The living cost is estimated to be less than RM500 per month.

May God bless Chong Chiang in pursuing his ambition as a medical doctor!

The Grouper
See you next post :-)

Monday, April 13, 2009

Day +1013 : Frozen chicken = Big frozen yam?

I am fine today.

My sisters brought a few frozen chickens from Sarawak last Thursday. They packed the chicken in a paper box as check-in luggage.

When they reached the LCCT, they were stopped by the custom officer who questioned them the items that they carried in the box. Knowing that it is prohibited to bring in chicken, they told the custom officer that the box contained yam.

The custom officer put the hand into the box to verify that it was indeed yam that they carried.

“How come the yam is so cold?” she asked.

“We kept the yam in refrigerator,” my sister lied :-)

“You bring big yam?” the officer asked again. She wondered how come the yam was so big.

“Yes, the yam is very big,” answered my sister.

The officer let them go and I got to enjoy these delicious chickens from Sarawak :-)

See you next post :-)

Sunday, April 12, 2009

Day +1012 : Easter potluck dinner

I am fine today.

Our church organized an Easter potluck dinner this evening. About 150 church members and friends attended the event.

My second sister and third sister who visited us from Sarawak also attended dinner. They had been seeing the "delicious" postings of our church previous potluck dinners and were very happy to be able to attend the potluck this time :-)

As usual, many delicacies were served. After the dinner, a few church members gave testimonies on how Jesus transformed their life. Apart from the sharing, a very attractive and meaningful drama was also presented by teenagers.

I believed everyone who attended experienced a great night :-)

Let me share with you again what we had.






















Part of the attendees
Dennis and Daniel hard at work
My third sister and her youngest son, Raymond. She bravely donated her stem cells to me and as a result, I have the same blood as her :-)
See you next post :-)