Sitting in the Mess

One of the medications given to me is a laxative, this means I had to go do big business every two hours or so. It is that effective.

But when you are in the hospital ward and you are not allowed to go to the toilet, it is inhuman to be subjected to long hours of ‘sitting in the shit’!

The laxative gave me a good movement in the morning after breakfast. My mother came to see me. She asked the nurses to change my diapers.  “Tolong-lah,” she appealed nicely.  Two young ones finally came, drew the curtain and took off my diapers.

“Where are your wet tissues?” We have to buy disposable wet tissues for nurses to clean us up. These tissues are not cheap especially if you have a few runs in the day.

  Adult diapers, something I loaf to wear…………….

 

(I found a site for people who wear adult diapers, http://www.experienceproject.com/groups/Wear-Adult-Diapers/139333)

Then, after lunch in the afternoon, a big wet one came.  I tried to restrain myself but failed. 

The rush was all the way URGENT.

“Sorry, mother, I know it stinks.” I was embarrassed.

My mother went to find the nurses but they were all buzy. The first year trainee nurses just smiled and walked away when they heard it was ‘berak’ (big business). We have to wait for the nurses on duty to do something. All the nurses said they were buzy, obviously. No one liked to change brown diapers.

These pictures depict the real life in the hospital ward. Unflushable toilet bowls, brown mess on the toilet floor.

That afternoon, I sat in the messy diapers for more than three hours.  When I sat up to drink, I felt like I mashed up something round and soft!  It felt so uncomfortable.  When I lay down, I felt like the mash was further meshed! I tried tol let my mind go somewhere by reading a book, but the mush was down there, and I could feel it then and there. It was uncomfortable to know that bacteria are brewing down there, feasting on my discharge! Yak!

I complained that it took me three hours to have my diapers changed. The nurse was irritated, “We got a lot of work to do. You are not the only patient here!”

That afternoon, I decided that independence is the way to go if I were to heal in this ward. No way, will I let myself be subject to this inhuman condition any more. I must get the order of ‘cannot go to toilet on own’ overturned as fast as possible.

When doctor P came at 5 pm to give me one more check, I told him about the messy mess. “I’ve little dignity left!” I told him, “please let me go to toilet by myself, I promise I will not fall and I will ask my mother to wait at the door.”

My mother helped me to argue my case too. “Very bad, she had to sit on her diapers for a long time. Bad wind goes into body if she does this every day.”

The doctor finally relented, “Ok, I will give instructions but you must make sure you don’t faint in the toilets.”

“I will ask my ward mates to also help out if my mother is not here,” I gave more solution to the situation, desperate to be independent.

That day, I learnt that the freedom to clean your own shit is not a born right!!

By Ching Ching

A Burden Lifted

Today is my sister’s birthday. I waited on the yellow chairs at Menara Utama in front of Secret Recipe.  People-watching is great for the soul, I concluded.

For two hours, I saw wheelchair-bound persons carrying their own bags to go up to the wards. A few were on crutches, but they carried their bags and walked with much dignity.

My home carers came to pick me up for lunch. We went to a Western restaurant in Section 17, PJ. I had a ‘duck l’orange’ that tasted like heaven….and chocolate cream pie that melted in the mouth. My sister enjoyed her pasta and my daughter enjoyed hers. My mother got her soft lasangne for her teeth. Every one was happy.

As I looked around the table, I realized that the past few months since I got sick had really changed our relationship with each other. Not only that they are supportive with what I do in eHomemakers, my sister and my mother have been paying for meals!  And we actually talk and laugh without me being criticized. The support I envision whenever I pray to Goddess of Mercy is working!

 

Remove the blockades and let good energy flow freely in me and around me!

Buoyant by the new bondings, I decided to follow the advice given my energy people. Forgive people so that the energy can move, so that the universe can channel the good energy into and onto you. Forgiveness removes blockades. So I must forgive my home carers for everything－ for their skepticism of my non-profit work, their unsupportive past and all the misgivings I have as a patient needing their care and understanding.

In the car, I said to my mother, “I forgive you!” And I hugged her.Taken aback at first, she finally said, “I gave birth to you, how can I not support you.”

Then I said to my sister, “I forgive you!” And I hugged her. She said, “Ok-lah!”

And then to my daughter, “I also forgive you for yelling at your mommy!” And I hugged her tightly.

They dropped me back to the hospital and I slept at 1 am instead of 4 am.

By Ching Ching

Another Departing Soul

I came back to the hospital early in the morning.

My tests came back. The result showed that there was high level of autoimmune activity. The Lupus medical team came to see me. They asked questions as to my sensitivity to the sun and checked if I had the butterfly imprint on my cheeks. My blood test for Lupus was negative.

 “I got sun burnt just like any Chinese lady,” I told them.

“It can take 3-5 years to diagnose lupus, meanwhile we have to classified you as having auto-immuned disease.”

The Chinese elderly lady who had been on oxygen passed away. She didn’t eat nor open her eyes for ove a week.  Her daughter cried. I felt tears on my cheeks just listening to her sobbing and the ‘Why are you leaving us?”  Strong love warms my heart.

Calming the soul when the ashes
from cremation are spread  to nature.

She was wrapped with a white cloth. A few hours later, Buddhist monks came to chant for the departing soul. The family cried softly. Then she was wheeled away to the mortuary.

A living life was thus gone.  May her soul be blessed for the next life.

Seeing deaths in the ward has made me more circumspect.  It is really true that one can’t bring anything to the other side after one takes the last breath.  And when a patient is faced with the impending arrival  of death, what would she do?

Will seeing angels help one to feel better at such moments? 

By Ching Ching

Things You Take for Granted

One Friday 9 pm, I was discharged from the ward for home healing. Elated, I changed into my clothes.

" Oh oh, I don’t have any underwear!” My home carers had forgotten to give me a new change of clothes, all I had were dirty clothes. I wore the blouse and the pants but the underwear!!!

“You don’t have enough stretched underwears! Only a few old ones are suitable for you, the rest are too tight on your belly! ” My daughter lamented when I chided her for forgetting to bring me clothes for the discharge. “And it has been raining, the clothes are not drying fast enough!”

“We don’t have time, we will have to go to get you L size underwear.” My sister suggested.

“After I get well, what do I do with the L size?”

“Donate to Ah Poh (my mother)!”

“Why not borrow from Ah Poh? Now that you have to stick menstrual pad and towels inside the underwear to soak the liquid, Ah Poh’s are perfect, even the L size of modern underwear is too tight for you! ”My daughter suggested.

All of a sudden, we burst out laughing except Ah Poh.

“What is so funny?” Ah Poh cocked her eyebrows. “My underwear is comfortable and useful. And low cost. ”

MY daughter snickered, “Ah Poh, your underwear design is number 1.”  Ah Poh still wears underwears she made from old cloth.

LASTING TRADITIONAL DESIGN

This underwear design makes it airy 
and with lots of space to wrap thing on the top.

How an ascites patient can make full use of such functional and low cost wear? See the diagram below for instructions on how to roll a small towel onto the top of the underwear, and how to tape menstrual pads around the top of the underwear. This way, you have a low cost wear to stop the peritonel fluid from wetting your blouses and your pants or skirts. If you use medical gauze that the hospital use, not only that it is difficult to find, it is also more costly.

Do remember to bring several small towels if you are out for at least eight hours. Chuck the towel away when it is wet and smelly and put it into a plastic bag. Change into a new one. You have to wash the towels daily for they can smell badly after a few hours. Remember, they come from your body and the water is pressed through the internal organs!

Use menstrual pads that are meant for night time. Those which are highly absorbent are the best for you don’t have to change the pad at night and you can sleep through!

Then the most touching thing that happened: my sister handed me a bunch of M size ( she is two sizes bigger than me) underwear with ‘stretched’ tops,  “I lend you my underwear, already washed with Dettol, so no germs from me. You don’t have to buy so many underwears now cause your sizes keep changing. ”

Underwear is a very private thing, for someone to lend you theirs means they really want to help.

Wow!! 

By Ching Ching 

All That Hurts

The ward is especially noisy in the day time. Much of the noises are contributed by family members of patients.

A Chinese woman was standing by a wall, yelling onto her handphone, “So you blame me for mother’s cancer? Of course it is not your fault so you won’t pay!”  She banged her phone onto the wall, and at one point, almost screamed profanities into it. Her mother who just had a cancerous tumor removed,  laid on the bed, shutting her eyes throughout the ordeal. She didn’t eat her dinner that night.

The heated argument, temper tantrums from carers stress patients out. Fighting and screaming in front of a patient is very traumatic for anyone who is already in fear of the disease and wanting comfort from family.

There are other family members who argue in front of the patients. It makes the rest of us uncomfortable having to listen to people fighting each other in the ward. It makes us feel that the society is cruel and cold and hopeless.

I sighed when I heard the woman continued her angry lashings even when the doctor’s team was by her mother’s bed side. How sad!  She was so absorbed that she didn’t even ask the doctors about her mother’s progress.

She continued. It was all about money and who has the time to come to the hospital. It seemed that she was the only one while the rest of the siblings abdicated their responsibilities with various excuse.

So when the doctor’s team came to mine, I asked if they would discharge me and let me go to vote on Sunday and to celebrate mother’s day with my daughter. I wanted to go home, away from such negative atmosphere. The doctor told me they had to observe me till the afternoon before they made a decision.

At 4 pm, an older doctor, a senior doctor came to check on me. He was satisfied, “We need you to vote to make changes, so we will discharge you for home leave today. You can come back on Monday!” Another reason was my father’s first death anniversary on Wesak Day.

I was so happy with my first discharge to home.  I packed within minutes but it took me more than four hours before the paper work and payment were completed. The nurse took the ascites tapping tube off, so I went home with water flowing from the hole!

“What is the best I can do at home?” I asked cautiously.

“Make sure that everything in your house is clean so you don’t get infected!” Her only advice.

It was raining when my sister came. It took us more than an hour to get home. We tried to find the gauze and dressing plaster needed for my tapping but the pharmacy did not sell them. So we rushed into a small clinic and got what the clinic offered us.

That night, my daughter changed my dressing on my bed. The little new nurse is now learning to be gentle and how to do things in a more septic condition.

It felt so good to finally lay on my own bed after all these months of absence.

By Ching Ching

1 Malaysia

The ward is very multiracial and shared by male and female patients. Some rooms are for male patients while others for females. There seemed to me more male patients, they were mostly Indian men with lung cancer due to heavy smoking, and also liver cirrhosis due to heavy drinking. The men are mostly from the lower echelon of the society.  Most of them seemed to have problems understanding medical care as they fought the nurses over needles, drips and blood drawing.  Some even threw their medication away.

X ray of a lung with cancerous cells.

The Indian male patient who had been howling all day and all night now screamed at the top of his lungs for help.  It was unnerving to listen to him.  Nurses rushed in and he was scolded for pulling his IV tube out, moving his arm away in the midst of blood drawing, and kicking at his dining table.

My mother striked up a conversation with an elderly Chinese lady next door. She couldn’t sleep at night so she promised my mother to take care of me at night. Sure enough, she came around at night, drawing the curtains around me to prevent the cold air conditioned air from over powering me, pulling at my blanket so that my toes were covered, and asking me if I needed warm water.

I told the elderly lady that
she was an angel in real life.

Around midnight, a loud commotion was heard, an Indian man shouted, “Ooi, how can you poke the needle in him when he is in pain?”

Then more shouting, the nurses yelled, “Call the security! He is pulling off the IV tube!” 

Two security men rushed in and took the friend out of the ward.  He pleaded with them that he had no money for the bus and it was too late to walk home. The security man told him to sleep on the chairs on the ground floor or get out of the hospital totally.  I listened as if I was listening to a radio drama series. One can hear clearly everything that occurred in that room in the dead of the night.

The male patient continued to moan throughout the night. I wondered if he ever got any sleep.

Because I have not been able to sleep.

By Ching Ching

First Hospital Death

My roommate had a foul mood. He scolded his wife and yelled at his mother for not cooking his favorite dishes and gets someone to send to the hospital.

Commotions were heard in the ward early in the morning, the elderly Malay woman in the opposite room was in critical condition. Oxygen tank was moved into her room and she was transferred into a single room by herself. A room where the door is closed at all times and there is a red light outside to indicate bacteriacidal rays being spread in the interior of the room.

Her family members stood along the corridor, most of them were constantly on the handphone telling other family members what happened. Her sons prayed non-stop at her bedside. An elderly man sat on a chair infront of the room, he had been there all night long. He looked very tired but he wouldn’t go home.

Somewhere in the late afternoon, the elderly lady took her last breath as the prayers got louder. Then someone cried. Nurses rushed in. Then they were cleaning the room with sanitizer………..

I closed my eyes.

But I couldn’t shut the moaning, screaming noises and my roommate’s curses away from my ears.

By Ching Ching