Going Home

When the doctor’s team came, I appealed to them to let me go home. “Look at how many antibiotics you have given me! The ward is dirty! If I go home, I get less infection and I will heal better! Please!!”  They listened patiently.

“We do one more blood test to see how your fluid is,” the trainee doctor told me the group’s decision.

The blood test result came back, I am better than before. 

“We will discharge you for two weeks, you can come back to the clinic for assessment and we will take it from there.”

 I was elated. The nurses gave me a sheet of medication instruction. I called my daughter and my sister, “I get home leave. Come and pick me up!”

“What? Can’t you stay in the hospital? We are not prepared!” I was shocked to hear my daughter saying this on the phone. 

  Angel Gabriel is in my mind

  “Why? Aren’t you happy to see me home?” Stung, I asked bitterly.

  “We haven’t gotten the house prepared for you yet,” she was honest.  “I don’t want you to get infected.”

  “Well, whether you want it or not, the doctors are letting me go  home.” I was firm.

  At 9 pm that night, I was home again.    
              




But I saw things I didn’t like the moment I stepped inside the house compound. The plants in the garden were dying because no one watered them. The living room was quite messy with all of my daughter’s things still laying on tables and on the couch. The toilet in my room was dirty,because she hasn’t had time to clean it

I want to be comforted by a higher being when I feel lost.

“How can I live like this?” I was mad, but them I thought about all the healing tips I gave to myself, and I took a deep breathe. 

“Tomorrow, I will improve on all these, one step at a time.”

Yes, tomorrow, there will be tomorrow, it is only a day away.

It is good to be home.

By Ching Ching

Going Where I Hadn’t Been Before

The office called me today. We accepted a Pakistani intern under AIESC with the name of Salman Nooraini. Then during the final skype interview several days ago, the admin team decided that he wasn’t serious in his internship as he just wanted free accommodation while he toured Malaysia. He asked in the interview who was going to take him to go for tours instead of asking about the video editing project. When the office emailed AIESC about the rejection and the reason, eHomemakers was told that he was arriving on June 2^nd and there was no way to return the ticket.

“We have to prepare the room in the office for him. We need to get a wardrobe since he will be here for six weeks.”

“This means I got to get out of the hospital to use my credit card?” I asked.

“We should go to Ikea to get one of those nicely built and long-lasting wardrobe. The plastic one I bought for Rhon from a hypermarket became flakes after six months although it was cheap. We need to have long lasting furniture for long lasting work!”

“If not, we have to get a check from accounts. Shops don’t take checks for such small purchase.”

My mind was running, “I got to help the office out,” was my last thought when I fell asleep. 

\

Before I knew it, I was living the critical moments of my life again. I was crying when my mother threw a pail of cold water on me. I must be only two years old then. I was standing on the back of a lorry enjoying the ride when my family moved from the wooden house to a new brick house. I was only five then. I sat quietly as the teacher in the Standard One Class for primary school hit my knuckles with a ruler because I couldn’t hold my pencil straight.  I was pulling my ears standing up and lowering my body, a punishment form the math teacher for my wrong calculations at the blackboard. I was given a chicken wing at dinner and my grandmother said to me, “Girls must eat chicken wings so that they can grow up and get married, fly away.”

My baby brother, a Down Syndrome child, was brought back from the hospital and it was hush hush. My mother told me, “From now on, you and baby will be inside the room if there are any visitors. You take care of him because we don’t want any one to know about him.”

Getting married………….

Working overseas…….

 

Being stationed in Egypt and all the excitements….. pregnant but all my favorite foods unavailable to me….giving birth at the hospital….

Bringing up the child…..

All the years went past me, fresh and vivid.

Then I seemed to have woken up. The Indian woman who was holding her mother’s diaper kept coming near me to get to the rubbish bin next to my bed; the nurse who was taking blood pressure of the patient at the next bed kept walking past me; the Malay man who was holding his wife kept stroking his back. All these people repeated their actions over and over again. It was as if time stopped and went back just for those several minutes.

It was as if I was watching a parallel world where people in my world’s actions were repeated in the other world too. I didn’t see a white light.

But I remembered Salman’s arrival, my mind said loudly, “You’ve to go to get furniture.”

I woke up.

I couldn’t comprehend what I experienced and saw. “Strange",  I thought to myself.

The next day, I told the doctor about this.  He listened and checked the time when I saw all these things. It seemed to have occurred around 3 am or so when the nurses did not check on me for an hour.

‘What happened,” I asked.

“I don’t know. The best thing is you are alive.” This was his only conclusion.

When I told my friends Chern and Lay Hoon about this incidence, Chern who read many books about near death experience of hospital patients pointed out, ”You went out of your body that night and almost gone to Heaven! This was why you saw yourself at those important moments in your life. God was showing you your life in one fast cinematic broadcast. But you didn’t quite get there yet.”

Huh?  Really?

I was between darkness and light, the living world and the other world, and I felt the non-existence of time zones.

And I ‘came back’ because of Salman!

By Ching Ching 

Even the Gods Cry

Back to the hospital again for tapping. I laid on the bed after the doctor’s team checked on me.  The phone rang. Staff XYZ called, “I am coming to see you. I have something very important from some advisors about your situation and eHomemakers’.”

Staff  XYZ  stood by my hospital bed to deliver her message calmly, “No one wants eHomemakers, there is no profit in it,” she was also representing an agency. XYZ, which was going to apply for grants to groom social entrepreneurs with eHomemakers and my story. Then I got sick, and there were indications that I could die any time, so they gave up the idea.

Although I wanted to count on her to carry on eHomemakers with the rest of the team, she refused to be a social entrepreneur. “I told you when I joined you that I would only help you during these two- three years. Social entrepreneurship is not for me. You agreed and now you ask me to take over?”

“Look, we have won awards and the last one was in November 2012! I am giving you something that is valuable!” I hanged onto the positive but I was weak and confused. Why would no one appreciate what eHomemakers has done? Is the world so cold and uncaring? Everything has to be money money money!

“So what, there is no money in it. Do you see any social investors coming in to inject money? Do you have a strong revenue stream from the poor and the NGOs whom you are helping?”

“We are working on it, we are making TV documentaries on women’s stories and it will bring in revenue. The NGOs are still getting used to the idea of adopting mobile technology, once we get our mobile money going on, they will come in droves. I still believe it will work,” My tears clouded by eyes by then.

“Well, it looks like you are the only one who believes in this. So how long are we going to wait while you are sick in the hospital?” Her cold corporate voice pierced through the cold air in the ward. I trembled. My heart shrank.

Dumb founded, I could only let the tears flew down my cheeks slowly. Silently. Lightly.  

Were the Gods crying too?

Staff XYZ was asked to advice me on what to do: Let a few core staff run and finishes the current grants, then close eHomemakers. When I die, my daughter will receive my insurance money to go to college and I should not worry about money.

That was sound advice for someone who was dying.

“Why? I give you all of eHomemakers, the intellectual property, ECHO, and everything, just don’t let eHomemakers die! It is my 18 years of work,” I cried out. “I will sign everything over to you now,” I was desperate. I love eHomemakers as much as I love my daughter, both of them have been groomed at the same time. I have give all my energy and time and resources for both.

She shook her head, “No one wants eHomemakers, it has no value. You don’t have a steady revenue stream to pay professional team.”

“It is not true. I am building the revenue stream with the team and those who are with me have been with eHomemakers for over six years. Some have been with eHomemakers since we founded. We have a professional team, just lacking the marketing team which I was hoping you would be heading.”

“Sorry, I am not doing things that go no where. I have given you two years. I got to move on. Non-profit work is not for me. I wish you all the best.” She left. Just like this.

I tried to call her back. But my voice was gone. And she never turned back to look at me or waved a good-bye.

That is it, Ching Ching.

Some people come into your life for a reason, some people come into your life for a season. But those who stay with you will live footprints in your life.  Why don’t you count how many people are leaving footprints in your life? Those who were in your life for a short time and for a specific purpose were here to teach you great lessons and to remind you the very essence of life –perseverance.

Pong did not shed a single tear over her husband’s leaving her.

 But I shed tears for everyone who left me.

Remember what Pong said about her husband who left her when she was in a coma? “He was my husband because Buddha wanted me to change to be a strong person after I came out of the coma. He was the way to show me. Every time I thought about him after my recovery, I said to myself, ‘I must show him that I can live without him.’ So I did, and here I am!”

That night, sleep eluded me. Someone in the next room passed away. Moans, howls, and cries were heard all night long, loud and clear. An Indian man. The family evoked the punishment from the Hindu God of Destruction, Krishna.

“Would it be the same if I die? My home carers will be standing here crying, maybe not as loud?”

The thought chilled my whole being. I slept fitfully that night.

I heard the song, Cry me a River.

  

By Ching Ching

Learning to Dream

I am home.

I am at work.

It feels ‘strange’ to sit on my chair to work. I have almost forgotten what it feels like to work 

nine to six.

The computer screen looks familiar, everything I have known are all in the right place.  I fumbled at the keyboard. Woosh, I was typing with my nails!! Where is “A’, “Z’,” R”, I have to look at the keyboard closely to type. 

My mind recalled how to open a word document, and how to access my email, but the computer did not do what I wanted it to do. It took me half a day to figure out the computer before I could get any real work done.

I clicked on the ‘IN box’ in my email. Holy cow, almost 600 email came in! It will take me at least a week to deal with all of them. Meanwhile I struggled to type on the keyboard. Many spelling mistakes. And where to insert this, and underline that?

Where are my things?  

    I have been
forgetting to bring my handphone...........

I was frustrated, even more frustrated is my daughter who has to come over constantly to show me how to use the computer again.

“You can’t give up,” Lucy saw the tension between my daughter and me over the computer. One wants to do things fast, one has other things to do in the office besides teaching computer. Turning to my daughter, she insisted, “If she learns faster, her mind will be calmer because she will worry less, and it will be good for her.”

Besides computer usage problem, I can’t remember where some of my files are! So when I need to work on something, it takes me quite some time to search for my folders in my email and also in my hard drive. I got worried. How is the ED of eHomemakers able to bring things back up to pace again if she can’t remember her files and many things?

“The only way is to be patient, work hard to get better, and pray to God" Lucy’s advice. “But don’t work too hard that you fall sick again. Remember, you are on steroid now, so you feel that you can do anything and everything. The truth is, you can’t. Your mind is running but your body is not.”

“And try to use different things to help you to remember.”

Color coding things help me

 to remember which is for which purpose.

I get tired easily. After every hour on the computer, I have to lay down on the couch in the living room of the office. Sometimes I am so frustrated that I feel like giving up. Times like this, Lucy advices again, “Then think about all the good blessings around you, and dream about good things. When you feel better, start again.”

Dreams? Pong has dreams to travel around the world to meet other disabled who do unusual things and to be a motivational speaker. What is my dream?

I wish a strong team with a strong leader with same vision as me take over eHomemakers so I can write, make documentary and travel around the world.

Going to the US to do my PHD, back to the academic circle to debate over nice dinners and wine.

Being a motivational speaker, travel widely and speak.

Being a sought- after mentor for institutions which have social entrepreneurship programs.

Become a totally changed person.  When I walk, flowers open for me; my light shine onto others. The world is mine. And life is fabulous.

Many good friends around with good conversations, wine and good foods, and lots of travels to see the world with them.

Both Lucy and Pong told me 
that the best thing to forget is the past.

My good friend Jabu told me to write down my dreams. It will actualize when you write them down and feel the success of the dreams.

So here they are in this blog.

By Ching Ching

Wesak Day

This Day is a day I don’t know if I should be sad or be happy. My father passed away last year at 8 am on Wesak Day. The monks told the family he is a high being as he left the world on Wesak Day and an hour before all the celebrations started in temples. On the other hand, I miss him- my mentor and an example of how life should be lived – with great forgiveness and all the love you can give.

A day to cleanse one's being and search for spiritual ascendance.

Let the lights shine onto you. Light the candles to take out the darkness.

My brother’s family drove from JB to a special Buddhist temple. They only came in for a few minutes to check on me, they wanted to prayer for me at the temple. My wish to have the whole family together, talking and eating, was dashed. Oh well!

 So I spent my Wesak Day reading a book……and being calm.

Lucy came to see me in the afternoon and brought me bananas. I told her about my reservations about the steroid medication,”My tummy is still big!”

“You have to trust that it will work, maybe it takes longer time. But have Faith. If God sends you here, he must know that it will work! Give it time!” She is forever so reassuring.

Lucy has become my live or die councilor.  All my woes and misgivings about being an ascites patient are resolved by her. All my doubts and questions about the hospital were answered and clarified by her. And all my inner thoughts about living and dying are shared with her. Only she understands because she has been a patient.

Thank God I have a councilor, a friend, and an undying flame with a strong hand to support me.

So for the rest of the day, I envisioned myself joining in the Wesak Day celebration,searching for inner peace and inner strength.

By Ching Ching

Visualizing and Feeling Good

So after re-reading the book, “The Secret”, I started to think about good things especially when nurses are taking blood from my veins…..

One day, after an excruciating painful blood taking, I lay down and jotted down something that I’ve never dreamt of before – what do I do when I win a lottery of Rm1 million. Money has never been in my mind, so it took me a while to think about what I could do with money!

This is what I want to do:
a. Give 10% to Pong and Lucy.
b. Build a special solar energy system in my house and grow vegetables on the wall and rooftops, generate electricity and sell it back to Tenaga.
c. Replace furniture, piping in the 30 year old house with better lighting, energy efficient piping.
d. Go to travel China and Europe with my daughter, it has been my dream.
e. Give the rest of the money to daughter to go to university.

If I win a lottery worth 10 million:
a. Give Rm1 million each to Lucy and Pong, takes care of Ng Kar Cheng’s living.
b. Do a+ b+ c+ d +e above
c. Buy a condo so I can stay in a smaller place when daughter goes to university.
d. Invest in eHome myself without having to beg people for money.
e. Visit daughter yearly when she is in university.
f. Invest my money for retirement and health care!

I smiled and felt good.

Now let see if the Secret works…..

By Ching Ching

Learning to be Humourous

“We are prescribing you steroid,” a doctor told me. “We will start with eight pills, then gradually reduces the number of pills. But you must remember to take them daily.”

The medication nurse will give me my pills in the ward, it is when I am home that I must remember.

Grilled chicken on a stick!

I am beginning to feel better. 

“Be careful of your ayam panggang ( grilled chicken on a stick)”.  I told the nurses when they rolled me over to wipe my body.” They laughed. 

“I used to be very beautiful,” I told the trainee nurse who came to take my blood pressures. “I don’t know what has happened!” She too laughed.

When the doctor’s team rolled me over to check, I said to them, ”I feel like a leg of lamb, ready to be grilled any time by you guys? So may I have some mint sauce please?” I heard a few chuckles.

A doctor tapped my big belly to listen to the sound of water. “Do you hear a whale or a dorphin?” I asked. He humoured me back, “You sure have whales and dorphins inside that big belly of yours.  People pay a lot to see whales and dorphins. Do you still want us to get rid of them?”

When a doctor was trapping my belly to decide on where to open a new surgery hole to drain the fluid, I asked him if he needed a GPS to find out the best spot on the tummy.

I am learning to crack jokes in three languages, it gets my mind working.

Also, I am learning medical terms so that I can crack jokes on myself.

Because I‘ve become more cheerful, other people seem to have become more cheerful towards me.

A neighbor came to visit me and asked me if I was satisfied with the hospital. I am with the doctors, I have no complains, and I will not be going to a private hospital again. I like doctors who care instead of thinking about how much more money and how quick they can make the money from a patient.

I guess I will stay with the medical teams till I am fully recovered.

By Ching Ching

More Learnings

I have now a clearer head to work on my adjustment to the hospital.

If a patient wants to be happy in the ward, she must build community relations with the doctors and the nurses. Give something thoughtful to a grouchy nurse, she might treat you better next time.

I am learning more about my body so that I can help myself in times of crisis. For eg, the human albumin drips got to be about 25 drips per minute, otherwise my vein hurts. Knowing which vein gets hurt easily and letting nurses know that they shouldn’t be poking on those veins is another way to avoid more unnecessary pains.

Sometimes I sneaked out to have lunches outside. The 24 hour food court on the ground floor opposite Menara Utama was the place to go but you must know which stall to go to. The Rm7.90 assam laksa was a rip off  at one of the stands. Don’t try the dishes at Home Food, I paid Rm8 for five spoon of rice, one tiny fried fish, three teaspoon of kangkung and three miserable pieces of tofu.  I asked them to throw their egg sauce away as it was bubbling with bacteria under the heat.

The stall SE Care is much cheaper and the foods are fresher. There are more varieties of vegetables and curried meats. 

I also figure out where the cleaner public toilets are. They are at the payment counter! Don’t try the public toilets in the ward. The new building also has cleaner toilets!!

My daughter said to me, ”You look much better now! Am I getting my mommy back?”

YES!!!!!!

I noticed that her boy friend, GG, has been a reliable carer to her. He has been bringing her to see me at night because she can’t drive. And he waits patiently by the wall as my daughter and I hug and talk. Sometimes, he got sent to get me cold drinks or some snacks for night time. He always obliged. And he checks on her daily, brings her out for dinner every Thursday and stay in the house to keep her company till 10 am. 

And, according to my daughter, he never takes advantage of her…….!! Halelujah!!

By Ching Ching

Things to Bring

A new patient came into the ward. She forgot to bring many essential things for her stay. Her family did what my home carers did when I first came, “We will bring you these the next time we come.”

But they didn’t make a list, I wonder if they could remember all the things they should bring.

Watching her fumbling around and later crying.  She didn’t bring her handphone and was unable to call home. I suddenly got an idea – let me list down things that patients should bring when they are admitted. This will help many people!

So below are my checklists which I compiled when laying on my bed, looking around me.

Things to bring from home:

1. Colored bags – This is to help you to be admitted without stress. For eg, the purple bag is for clothes to change like underwear; the green bag for relaxation such as books, or other things; the black bag is stuff for work, the pink bag contains toiletries.

2. Something that smell good --  The ward could sometimes smell very awful- vomit, shit, urine from your bedmates, or oily foods that their families eat by the beds. Bring baby powder to give yourself nice feeling after you wipe your body, may be even perfume during days when you are depressed. Or sanitizing sprays.

3. Bring black pants – The pants won’t show even if it is dirty and unwashed because your home carers have forgotten about bring laundry home for you.

4. A sweater – The ward can get very cold and you need a sweater when you are waiting for your turn at examination rooms.

5. A neck pillow for reading for browsing internet with your Ipad.

6.Books to read. Books that can take your mind somewhere for a few hours.

7. A bath towel and a face towel.

8. Cash not more than Rm250 and credit card ( if you rather do all the discharge procedures yourself to spare your family from waiting for hours for the discharge.)

9. Body lotion.

10. Toilet paper (One roll at a time because there is not much space).

11. Your favorite teas/coffees/drinks in powder form.

12. Handphone –a must!!

Things you need to buy or buy from the shop on the ground floor:

1. Adult diapers

2. Wet tissue for wiping your body

3. Soap for handwashing

4. Tissue paper ( small packets because you don’t have much space)

5. Snacks – low salt, or low fat low low sugar, whatever you are allowed to eat – For night time when you can’t sleep and in between when you can’t eat the hospital foods.

6. Mint or something to make your mouth smell good.

7. A small bottle of dettol or bacteria-ciadal sanitizer to clean up things around you to protect yourself from bacteria infection. Keep a small bottle in your handbag so you can disinfect someone’s car when you travel in case your fluid wet car seats.  You can clean it up with tissue paper and dettol.

8. Menstrual pads – to use as towels for the drain hole when you travel.

9. Minyak angin  or ‘fung yau’ (Chinese medicated oil for tummy pains).

The most common ‘fung yau’ in Malaysia.

10. Lip gloss for dry lips due to the air-conditioning.

For the mind and telework:

1. An Ipad with internet access

Medical Expert Jotting Down
Case Sheet Notes Stock Photo

2. Books to read

3. Writing pads

4. A clip board with papers so you can jot down notes. 

Things your family should try to bring to you every time they visit:

1. Banana to get your electrolyte balance.

2. Your favorite foods if you don’t have appetite, but make sure the foods follow your diet requirements.

3. Nice notes and greeting cards from friends to cheer you up.

4. Freshly cut fruits to help your bowel movements.

Things your family and friends shouldn’t bring:

1. Flowers – The pollen can give allergy to other patients and you have no space to put them.

2. Very sweet and high fat desserts － Foods with very high sugar and fat don’t help any one especially ascites patients.

By Ching Ching

How Can They?

It appalled me that I have been given the wrong kind of diet again on weekends. The food delivery guy told me he was new and he didn’t know anything, so I had to wait till Monday to correct the mistakes. Instead of high protein low salt I have normal meals. I had to check with the rest of my seven ward mates to see who had my high protein low salt. It was difficult to really determine without tasting every one’s foods. So I had to settle with normal protein and normal salt!

 Excessive salt retains water in my body

I am only allowed 40 gm of salt per day.
It is only about a small spoonful and a half .

The ward was full of visitors, and the toilet was awfully dirty, I had to hold my nose to go in. The shoe prints were sickening. I had to wash the prints off with my bare hands. How can patients not get infections from the hospital?  If the hospital management calculate the amount it spends on antibiotics, the management should be able to see how much the hospital can save by just making sure the cleaning contractor do a good job.

And how can two contractors with multimillion dollar contracts from the government continue the contracts by doing such lousy jobs?

Since no patients dare to write a formal letter to complain, the mistakes and the sting continue. Unabated.

I told the medical consultant for the weekend about the two woes. He said, “What can doctors do? We are powerless!”

All over the world, people want transparency, accountability to public money. Why can’t we have this in Malaysia?

By Ching Ching

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