The Medical Angels

I am beginning to look forward to 9 am or 10 am when the doctor’s teams come to check on me. Someone would tap on my tummy to listen to the sound, and my files are checked – from blood pressure to temperature. Sometimes they discuss for more than ten minutes if there are any blood analysis, or tests results. If they prescribe something new for me, someone will explain why and how the new treatment works. They even draw pictures for me to understand.

I now know the hierarchy of doctors. One trainee doctor will be assigned to me, and this is the one I have to make all the ‘complains’ to. If this trainee doctor doesn’t give instructions for weekends treatments, then I will find myself having clogged drain tubes for the ascites drain bag or being given medications I don’t need.  This trainee doctor reports to Dr P who is the lead doctor for my case. He, in turn, seeks advice from the other senior doctors in the GI ward.

I like Dr P, not only that he looks intelligent with his glasses, he is fashionable with his hair gels.

Pong is coming to University Hospital for the colon surgery. I must go see the urinary department and build a relationship with the medical team, find out who is the lead doctor and make sure Pong gets the best treatment she can from the hospital, and that no one, nurses or toilet cleaner, will ever treat her rudely again in a hospital.

She deserves the best.

After 26 years.

By Ching Ching

Ascites Fashion

There are six issues you are immediately faced with at home and at work if you are an ascites patient:

1.The water retention grows daily as you eat and drink, so your clothes size changes. They get bigger and bigger till you are being drained, or in medical terms, ‘tapped’.

2.Draining – How is it done? They can also give you a urine bag to ‘drain’ you besides the ascites draining. This urinary bag will receive the flow from the urinary catheter and you have to carry this bag around too.  But you know it is always ‘down there’. And when you sit or sleep, you sit or sleep ON the urinary draining tube.

It is less ’risky’ than the ascites tapping bag. The ascites tapping bag has two blue hooks that allow you to clip the bag onto railings in the toilet and on your bed.   Since the ‘drain hole’ is on one side of the tummy, you fumble around with the tube when you eat, sit, go to toilet or walk around. (See the video I show about where to clip the blue hooks when you are in the toilet in the UM public ward. The railing in each room is different, some are on the right, some are on the left, so you have to remember which hand to hold the hook and which hand to do what.)

3.The unsightly bag – pedestrians will walk away from you in the mall, restaurant patrons in the next tables will ask to be seated elsewhere, proprietors of shops will follow  you thinking that you will accidentally trap the goods displayed with your tube!

One way to be fashionable and not grossing people out: Get an ecobasket from eHomemakers ( see www.justmarketing.info) and put the bag inside the artistic handbag! 

Eco-handbags are perfect
to rest your ascites tapping bag.

4.Punjabi clothes come in handy if you have access to this. The pants are in rubber bands or can be tied with strings, so the waist line is flexible to accommodate your shrinking or expanding tummy. But the colors can be too bright for Chinese patients such as orange, yellow, and purple. So make sure you have many Punjabi friends who are willing to lend you their clothes, otherwise you have to buy these and you might not be wearing them after you get well. Some neighbors may think that you are into Hare Krishnan or a Hindu! 

If the Punjabi top is too small for your tummy or the chest is too tight, then you can only use the pants. Beware of wearing different colored tops with the colorful pants, you can look like a clown when you don’t have enough clothes to wear.  I did look like a clown with my flowering peach background Punjabi pants with small red and orange flowers. The pants are so comfortable that wear them weekly. Several times, my big white blouses or peach blouses didn’t dry in time in the rainy days, so I had to wear colorful tops with the Punjabi pants as my wardrobe was very limited.

Punjabi pants come with elastic top for your
 ever-changing tummy sizes, and the pant legs are baggy.

5.Being discharged with the ‘drain hole’ means ‘managing the water’.  When my tummy was still quite ‘big’, full of water, the peritoneal fluid ( and it smells….) flew constantly out of the tapping hole even though there were stitches. The nurses removed them only seven days after the stitching. So I had to put a towel around my tummy ( that meant I needed Size L T-shirt or Punjabi top), strapped it with a strong under my big blouse or T-shirt, and kept changing the smelly towel when it gets too wet.

When I slept, a big towel had to be placed underneath the body part where the tapping hole was, and I had to wrap a big towel around my tummy so that the water seeped into the towel and not my bed.

And the fluid also drips out of the towel when I sit on the bowl to do my small and big business. So imagine the fumbling around when the string on the towel was too loose and the towel falls. Then I had to hold the towel with one hand while the other one does the right thing!

Once I was waiting in line in a neighborhood shop to pay for a loaf of organic bread, the towel fell off onto the floor. I picked it up and stuff it near the drain hole, but I didn’t do a good job, the fluid started to flow down my thighs onto my feet, forming a small pool of water.  And of course the smell from the fluid is not something an organic shop wants.  I fumbled around trying to find my cash in my handbag while one hand was stuffing the towel under the blouse. 

Luckily, a neighbor was there and she paid for the bread and took me home in her car. The fluid dripped onto the car seat as I was strapping the seat belt. Urrrrrgh, those rushing fluid, they seemed to want to spill out as fast as they could.

6.Creative water prevention – It took my carers and I more than one month at home before we figured out another way to for me to travel and walk around without a bulging towel underneath my blouse. Use highly absorbent night menstrual pads! We taped the wings onto my tummy and use the underwear as a ‘holder’ to keep it in place. 

It kind of worked well with me. I bought many bags of menstrual pads, since I am nearing menopause, there is not much use of them.  Using them for my ascites problem seem right! 

SO what kind of ascites fashion can one derive out of necessity without having to buy a whole new wardrobe? 

You have to have new fashion for:

1. For office

2. Going out in the day time

3. Night functions where every woman wears gowns

4. At home – Big t-shirt 

Having friends who are willing to lend you big t-shirts that match your Punjabi friends’ pants will help a lot. Make sure your friends don’t lend you their teenage boys’ t-shirts with prints of skulls and devils. It can get depressing when you don’t have enough t-shirts to go around. Pregnant friends who had delivered can also lend you some roomy fashionable clothes for night functions especially.

Like me, you may also have to consider borrowing big underwear from your elderly mother, and swear to yourself that you will never laugh at her home made underwear again!

Oh, get used to being naked in your own bed room. With all these hassles of fluid dripping, towels dropping, you can feel quite tired. Spend your weekend in your bedroom, naked, so you don’t have to deal with clothes. Just lay there with the towel or the menstrual pads and enjoy a good book or surf the net. 

By Ching Ching 

My Undying Love

One of the greatest blessings Pong has is her family’s support. Throughout her whole 26 years’ of being a disabled, no one in the family has ever said anything nasty to her. Everyone is supportive and concerned about her. When I met with her last year at the KLGH hospital, she spent the first hour talking to her family. Her father called from the house near the limestone cave.  Eldest sister who works in a shop in Ipoh called her during lunch time, making sure she finishes her lunch as Pong does not have much appetite. A sister who works in another town called.  Her adopted daughter who works in another town called. Her niece phoned after school to promise she will study hard. She told me at night, her eldest brother will call to report that everyone is fine at home and also to find out how she is doing in the hospital.

Such bonds between the family members and her provide her with high desire to get well. Even though the hospital treatments haven’t been up to par, her mental ability to stay alive has been cultivated through strong family support.

Although I live in a middle class home, Pong lives in a shack by the limestone cave, in many ways, Pong has more than me. She has precious undying family bonding that never once leaves her.

 It has been a challenging time for my teenage daughter who had to rush from office to hospital. Some days, she helmed the office with two other interns as she knew our admin operations very well. Since I am a workaholic, inevitably at home, when we were doing other things and the conversation topics went back to the office.

We have had quite a few quarrels these past few weeks. With my big fat tummy on me, there are many household chores I can no longer do and many things I can’t do for myself. Dropping dirty clothes onto the floor and unable to pick them up for the laundry basket, dropping a pen and unable to pick it up, needing help to get up from the bed, needing someone to use a washcloth to wipe my back because I can’t wet the surgery holes with water. All in all, I am functioning, at best, less than 30% of my original agility and speediness in home chores.

“I’m only 18, mom! Look at all the things I have to do for the office and for you. No one has a mom in the hospital and has to remember to bring her this and that weekly. No one has to live alone, clean the house, do the laundry and eat alone most of the days.” She screamed at me one time when I told her I was so disappointed in her for yelling at me.

Life has become intense for both of us. There were days I did yell at the top of my lungs when I was frustrated from not getting the help I needed. The steroids gave mood swings and I was having ten pills per day at the time. “You don’t respect your mother who has given you every thing all these years,” two drop of tears rolled down my cheeks. I was very hurt, “I’ve taken care of you all these years, and now helping me for a few weeks and you are unhappy!”

Then all the old hurts came back, “Ya, you always think your father is fun and I am boring. I have to take care of you during school days and he has the weekend to play with you. So I get the short end of the stick even though I give you my time and care,” I gnarled.

She barked, “Don’t you say that again” she banged the door.

Several times, I laid on the bed with silent tears. It breaks my heart to see someone I love turn against me when I most needed help.

It was her former school councilor who helped me out, “She has a lot to deal with and learn, obviously she is very stressed. She loves you very much. Let her go and have a break, take a few days holidays with her friends and let the stress go away, then she will be fine.”

I reminded myself about the poem, ‘If you love someone, let her go, if she doesn’t come back to you, she never was yours.’

Got to let the kid go.

She drew a booklet at nine year old. Page 1

   Last Page of the booklet.

    Center page of the booklet.

The last two months, between watching her smiling face at my hospital bed and angry grimace at home when I was laying down. Such trying times have also given me opportunity to see clearly that the two of us are different. I can’t mould her to me, she has been brought up by me to choose, to make decision, to speak up and to be free while I was brought up to obey the elders, follow the authority, and not to outshine any one else with my brains. I was supposed to keep quiet and bear with any injustice in my life, and just keep working hard to live my fate out.  But I have groomed her to change things around her with courage and determination.

She is nurtured in the image I dream of. But still, I have to let her be. She will be who she will be, her own woman. And I must accept it.

This realization would not have happened if not because of ASCITES!!!

By Ching Ching

A Live Drama

The ward was very very very noisy with visitors. I hate weekends.

The Indian man who had been moaning and screaming went into coma in the afternoon. His big extended family crowded into his room to wake him up.  Nurses rushed in to give him oxygen. When his mouth frothed, his family screamed at a high pitch as if they just saw the Devil.

Men talking loudly on the handphones. The whole world seemed to be collapsing.

Three hours later, he stopped breathing.  His wife and daughter shrieked at the top of their lungs. Then they ran along the corridor, beating their chests, screaming in Tamil as if devils were every where. They knocked onto walls, kicked the medical trolleys along the way. At one point, it sounded like someone was pounding on the wall of my room and digging her nails into the walls. It seemed like someone else grabbed a sharp object from a medical trolley and started to poke her arms and legs with it. Nurses restrained her and more commotion was heard from the family.

They scenes reminded me of Thaipusam. 

It went on for more than an hour, giving me goose pimples.

I asked one of the friendly nurses about death reactions by the various races. She said, “When Malay patients died, the family read the prayers, cry softly and then leave. Same with the Chinese whether they are Buddish, Taioist or Christians. But the Indians grieve very loudly and yes, it does feel like you are watching people in trance in Thaipusam. This is the cultures in Malaysia!”

Strangely, the ward became quiet after they left. Other visitors didn’t make that much noise. Children were not running around like they do on weekends. Finally, these unruly loud visitors are respecting a family’s grief!

By Ching Ching

A Long Day

All morning, the ascites tube was not draining properly, my tummy was painful. The nurses told me to wait till Monday. I felt like getting angry, “Why does a hospital tell patient to wait for two days to ease her pains? Surely someone could help?”

As the pains became more intense, I decided to take matters to my hand. I got out of the bed to look for the weekend medical consultant. I found one in white gown and went up to him, “Please don’t let me suffer for the whole weekend, just take a look at the tube!” I insisted. “I am not going back to my bed till you have a look.”

The weekend medical consultant promised me he would come.  “There are bubbles in the tube, that is why it is not draining.”

He injected water with a syringe to flush the tube. It was a sudden cold shock again but it worked. I was so happy seeing the fluid filling up the tube.

Several hours later, I let out a big long fart, air stuck by the peritoneal fluid for hours….. and the tummy ache was gone.

The Indian man in the next room came into my room, howling, “I want to see my boss! Let me go!”

Nurses came to coax him to go back to his bed but he wouldn’t budge. Security men were called in to carry him back to the bed. When I walked passed his room, I saw that his legs were tied to the bed railings. He continued to howl hauntingly, “I want to see my boss! Let me go!”

It was so sad to hear this. Perhaps he was worried about losing his job when did couldn’t show up for work. He must a laborer or some sort. His family looked quite unkempt and deprived. I heard the nurse telling his wife about buying more diapers for him. She nodded, all the time touching her gold bracelets.I wondered if she was going to pawn her bracelet to help her husband.

One thing I know is that it is not cheap to be a patient. And if you don’t have the things needed in the ward such as adult diapers, you lose your dignity.

By Ching Ching

Only My God Cares

I am now allergic to certain religious people. People who declare that there is only one truth and no other truths. All others are fake, devilish and must be eliminated.

These people use aggressive ways to make sure others convert to their religions, this include coercion of a better life after death, the use of guilt and fear, and even the use of ‘help” ( If I help you when you are down, then my God help me to help you, then you should come to my religion, otherwise why should I help you?)

And people who take my hospitalization as an opportunity to convert me at my death bed. They can spend hours to lecture me even when I am in pains or too tired to understand anything. They just keep talking and talking.

My sister was stressed from another family member’s constant forceful urging to join his religion. She was made guilty for not doing the chants and the practices. I refused to be forced as I believe that I know more about this family member’s religion than him. As a new convert, he is so gungho about his religion that his family spent whole weekends at religious places all around the city they live in. His wish is to get me, my daughter, my sister and my mother to be just as devoted. Anyone who resists get a verbal lashing about our un-gratefulness of good things.

The same goes with aggressive people who are bent on converting me to their religions. When I question them or ask them why they can’t help me as humans, friends, relatives, but only as someone from the own religions, some insist, “God sends me to help you to go to a better place after you die! If you don’t embrace my religion, you are missing out of good things.”

Guan Yin sitting on a lotus.Guan 

 The only religious people I like are those who don’t force  me, but always tell me they keep me in theirprayers and that their Gods love me.They don’t convert me nor force me to follow their truths.

After seeing deaths in the hospital wards and living for several months in the zone where anything can happen to me, I now pray to God in English about eHomemakers, that God will help eHomemakers to break through. I pray to Goddess of Mercy in Mandarin for support, friends, and loving kindness around me. I chant Buddist ‘Oom mani pak mei home’ to protect my body.

And the energy people have taught me to think. “I share, I touch, I am one with others. I love, I forgive, I nurture, I grow. Every minute of my life is fulfilled.”

Guan Yin with many hands and eyes

How can I be forgotten when I am loved by three Gods?

Of course, it is a scandal for the religious people to hear me declaring my allegiance to three different Gods. “You can only believe in my God to get the protection and the blessings!” They insisted.

When you have several people, all pulling you to their Gods, you wonder why none of the Gods is generous enough to love the unbelievers and why they have to condemn the unbelievers into sufferings and
more bad lives in spiritual journeys.

Some of the verses the religious people show me from their holy books say that they should not help those who don’t embrace the religion nor mix with the unbelievers. Goose pimples stand on my skin when I read verses like these.

Meanwhile, I am standing firm in my beliefs.

By Ching Ching

Pain Management

One of the key things that a patient must learn to cope with is pain management. Some pains that you have to bear with, almost daily -- the needle when they take lots of blood from your arms, the anesthetic needles before a surgery. 

I squirmed every time I see a needle－that was before I got sick. Then with this peritoneal fluid retention, more jabs come.  In March, my arms were so bruised that there was no way to find a functioning vein but to poke my toes or thighs. My veins collapsed from inexperienced nurses in Damansara Specialist Hospital jabbing me to draw blood.

Then in the emergency room in University Hospital, five doctors tried to take blood from me the first time I was admitted. ‘What happened to your veins?” they asked. After one hour, one of them managed to insert the triangular thing onto my right thumb. I was exhausted and spent by then.

God where are you? So much pains in life? Give me a break, please?

Eventually, I figured out that being humorous take my mind off the pains. So during surgeries, I cracked jokes with the nurses and the surgeons. I felt good to hear laughter in the operating theatre.And when I go back to my ward, I try to look at the surgery wounds as ‘windows to a better future’, and I assured myself that these wounds are temporary.

Chinese characters: Pains

“The pains are only today, and it will go away tomorrow!” I told myself repeatedly.

And I learn to take deep breaths and make myself calm. Enduring pains is stressful. But if I change my attitude and look at the needle pains at the moment of pain as ‘This is good for me’, “Just a prick and it will go away”, “Good medication to get you well, just breathe deeply and you will be alright, ” then the pains are more bearable.

With real pains and feared pains, my appetite has gone down. Since the tapping take away my blood protein, the doctor’s team has prescribed protein powder in the form of ‘Ensure’ so that I don’t lose more weight. I could get the powder in can form, in the form of a drink or in powder form. I chose the can form.

Attitude makes all the difference. 

All that can protect me

 The book “Living in the Now’, a Christmas present from my best friend five years ago has been in my current reading list. So for three days at the hospital, I slowly digested part of the content and learn to live in the NOW.

Just like Pong. The Pong who didn’t want morphine even when in deep pains because she wanted to talk to me.

Breathe deeply, think of all the good things around me. And be calm.

Think of my dreams, and the good feelings that come with achieving my dreams. Visualize success to get rid of the feeling of pains in the body.

 And also prayer for divine intervention.

And when I need human encouragement, I look for Lucy. She has been a lupus patient for almost three decades.  Ten years ago, she recovered from a one year Lupus flare-up and she almost died. When she got over it, she swore to God that she would devote her life to help Lupus patients. So since she has been with Salaam Wanita project for so long, she has become a trusted friend, and the only one I would listen to when I feel like giving up.

Her counseling consisted of advice to accept the illness and then move on with gusto. Some of the patients she counseled refuse to accept Lupus as the illness that had come onto them, therefore they refused to take steroid and the proper care needed. They choose to neglect. “You must forget the old you, and become a new person!”

I thank God that Lucy is the Angel Gabriel in human form.

By Ching Ching