Learning to Survive

In order to survive in this ward, I think I need to learn who my friends are and who are not. Doctors are friends, not all the nurses are friends and I have to beware. So I should try my best to avail myself for the doctors to draw my blood, instead. And they are gentle– because they are more gentle than most of the nurses

The diet is correct today.

Sara said to me, ”If they do this to us, there must be other patients who get the wrong food too. Then we have to take more medication because we are given the wrong food.”  She asked me to help make sure she doesn’t get the wrong food because she doesn’t have so much money for hospitalization. She wants to get out of the hospital as soon as she can.

Patients sit up or laydown while 
the chemo drugs are injected intravenously.

Most of the patients are on chemotherapy for various gynae related cancers. As I walk down the corridor to take a break from sitting on the bed, I see empty eyes, sad eyes, very very tired eyes, and eyes that scream “I am in pain!”  

Most patients have family members who stay all day especially at night to take care of them. I asked one of them why she takes three months’ no pay leave to care for her sister. 

“If you are not here, the nurses don’t take care of the patient. I’ve seen with my own eyes how my sister suffers. ‘They’ are king here. If they don’t like you, you are in trouble! Even if they treat you their normal way, you see what they do sometimes? You want your diaper change and you wait for several hours sitting in your big thing!  How to get well fast? ’ She threw a glance at the nurses, “ We want her to get well as soon as possible so three months from me and another three months from another sister, we will finish her chemo time with her.”

Close-up of an infusion bottle

 “Don’t you think they treat patients with family members around in a better way because they don’t want outsiders to see? When we are patients, we can’t complain without evidence.”

She nodded. “Your family is not here except sometimes I see your mother. So you better behave yourself and shut your mouth,” she warned.

“That is why my daughter comes as soon as she finishes work and stays till 11 pm and takes care of me all weekend.” Sara told me.

What a sad learning.

By Ching Ching

All Is Not Rosy

Aren’t nurses the nightingales?

I am still getting used to the military schedule, eat at a certain time even if you aren’t hungry, get yourself wiped at a certain time even if you are still sleeping. And then by 8 am or so, wait by your bed for the doctor teams to analyze you and check your daily progress.

Most of the nurses are rude. There seemed to be an agreement amongst them to purposely neglect me because I came from “Damansara Specialist’.   This is rather strange to me, doesn’t a famed training hospital train its nurses not to discriminate any patient?

When I appealed to have my blood draw gently, I got a ‘Do it yourself if you don’t like it’ from a nurse.

But the doctors are good, they listen attentively. One of them even reminded me about the Patient’s Charter which the ward proudly displayed on a wall.  “You have the right to ask for good treatment in the ward and also ask why.” I told him the treatment from the nurses. He went out to talk to the Head Nurse.

I am allergic to blood drawing by now. The thought of it gives me goose pimples

Before I knew it, the Head nurse came, ”You tell me who doesn’t do the work next time.” And she walked away.

I don’t think I dare……….it looks like the repercussion will be high……………..

The food menu lady came, I showed her Sara and my diet and the foods we got for last night’s dinner, breakfast and this afternoon’s lunch. Both our diet were switched. She showed me her written list from yesterday --- it was correct.

“But the print-out for the kitchen is wrong! It must be the data-entry person, I will inform them.”

Can a hospital afford to make mistakes like this?

That night, I heard a late afternoon nurse telling a night nurse, “She complained about us to the Head Nurse. So let her do things herself.”

The nurse call button at my bed

Indeed, when I pressed the red button for help in the middle of the night because of stomach pains, no one came. I kept pressing and finally one came, “What do you want? Why don’t you sleep?” were the greetings I got from the supposed to be tender caring nurse. 

                                                                   

I told her about my stomach pains and the need to have a doctor checked on me. “We are very buzy, I will tell him.”

No doctor came that night so I dealt with my pains with warm water. A tear rolled down my cheek. If this is the treatment I am going to get while I get well here, it will be no good for my mental wellness to be in an unsupportive environment.

Just bear with it, Ching Ching, this phase of your life will pass. Soon. I closed my mind and visualize me flying as a bird in the sky to fall asleep.

Breaking the monotonous routine in the ward were some ladies in scarves, hiding their faces from nurses. They came to people like me and asked, “Are you Chinese?”

“Yes.”

Then they sat down and gave me at least an hour of sermon about accepting Christ even though I dozed off to sleep often due to the medication. They are very insistent, they come back again and ask for progress!

By Ching Ching 

Meeting the Healers

I was woken up at 6 am again. After breakfast, I laid down and rest.

A group of men and women in white gowns appeared at my bed. “Mrs Chong, we are here to see you.”

“Call me Ms Chong.”  They read the admission papers written by the doctor at the emergency room. Then they discussed intensely.

The doctors are like angels

One of them, a nice smiling woman said, “So you came from Damansara Specialist?”

“Yes, I need a second opinion because the private hospital couldn’t find the cure.UM is highly recommended to me by several people. Your reputation is very good.”

The doctors smiled.

Then began a list of queries, what I do, what happened?

One of them wrote down things I said. The smiling woman said to me, “I am Dr W, I head the medical team here. We will discuss your case and do our best.”

“Oh ya, I have on disks all my tests results, surgeries results for you to download to your computer to build my case!’

“Excellent!” she smiled genuinely.  She also listened to my appeal of needing sleep, so I was transferred to a room with only one roommate. She came back, “I’ve called the dietician, she will come to see you to make sure you eat well.”

The dietician, a gentle lady, had a nice conversation with me. “If a large amount of protein is removed from you through the peritoneal fluid, you have to get a high protein diet. Also low salt, so that your body is not retaining water. But you have to be careful not to have too low salt, so that you don’t have electrolyte imbalance. Try eating banana every day for potassium.”

She gave me a pamphlet about sodium in foods. Wow, the normal tamarind has high sodium, but not the tamarind skin for assam laksa! There are many things I have to refrain from if I were to follow the low sodium diet!

I finally felt good after two days of neglect by the nurses.

That afternoon, I finally got some relieve of the tension in my tummy. A trainee doctor came to see why the tapping wasn’t draining. She injected some water and ‘flushed ‘ it back to the tummy, “Ooops, it is cold!”My body jerked up suddenly.

“So sorry, now it should flow again. There must be some dead skin cells stuck in the tube as you have had this for about two weeks now without flushing.”

Ascites tummy -- more than being pregnant!

                                                      

I spent the afternoon, letting the draining worked.  And I read, taking my mind off from the noises around me. In the midst of this, some trainee nurses came to take my temperature and pulse. Some were serious while the rest didn’t care much. Several of them came behind my curtain to do SMS on their handphones.

“How are you going to learn if you keep doing handphone?” I had to voice out the unfairness of it all.

They didn’t answer, walked away. 

                                  

The food trolley that is so part of hospital life.

At 7.pm, the food tray came. A man in the fifty was the food bearer.  My ward mate, an Indian woman

named Sara, said to me, “They give me cake for dessert and fried chicken. I am a diabetic with high blood pressure, I thought I am not supposed to eat these?”

Upon checking her tray, I found that she got my foods and I got hers－ steam chicken, fruits and vege. I told the food man about the wrong food. He showed me the list he was given. Mine said I was on ‘low salt high protein diet’, Sara’s was on ‘low fat, low sugar, high fibre diet’ but the food delivery list switched the diet requirement for us.

“How can a hospital kitchen look at ‘low salt high protein diet’ and then give me something else? It is ok for me, but it is dangerous for patients like Sara!”

“I can’t do anything, you have to ask the lady who comes around to get your menu daily,” he said, walked away. DON”T CARE.

I'm flabbergasted.

By Ching Ching

Shocking Sunday

 Animals in the zoo are quiet

By 10am, the gynae ward was almost like a zoo.  Although visiting hours was at 12 pm, families started to arrive and talk loudly. Children ran around, some even jumped up and down on empty beds, yelling.  Adults carried handphones and talked loudly to the phones besides chit-chatting loudly even though there is a sign, “Be quiet”.  

I got out of my bed and pulled the curtain surrounding my bed because the families visiting the patients on my right and left were so loud.  It was disturbing, young men peeked into the curtain even when I was tying my sarong.  And when I wanted to go to the toilet, every one stared at me. Since the toilet door can’t really be locked, I had to be careful no one budged in. The visiting families also competed to use the toilet even though there is a sign in BM – for Patients only.

The worst is the toilet seat. Someone stood on the toilet seat, I can see shoe prints on the seat. With my ascites bag and collapsed vein, I found it extremely difficult trying to use the toilet. The murky and moldy smell made me want to throw up. Since I had to go to toilet many times in a day – peeing and doing the big business to get rid of water, it makes life at the ward equivalent to ‘suffering’.

This is how the toilet seat looks like every day, with footprints

Worst, the family members didn’t even wash their hands after toilet. The toilet door handle was oily from people who washed plastic containers after eating the ‘ta pau’ food. The toilet paper I put inside the toilet was free for all! Strewn all over the floor as if it were cost free.

I couldn’t rest with all the noises around me.

By night time, I finally fell very tired. But sleep eluded me. The ward was full of chemo patients who cried, moaned all night.

God, where are you?

By Ching Ching

Shocking Saturday

This is a typical 8 bedded ward

The next day was a Saturday, there were no doctors except one or two medical consultants over the weekend.

At six am, the nurses woke me up loudly, “Wake up, brush your teeth, wash your face, eat breakfast.“

When I couldn’t move because I felt like wanting to fall asleep, she pulled the blanket out, “Wake up! I’ve many patients to do.” She pulled the blanket out and started folding them. A gust of cold air from the air conditioner swept over me. I shivered.

My belly still feel like a big hill

So I hauled myself up from the bed, my belly still heavy and big, and waited by the toilet door. When it was my turn, I had to go back to my bed to get my face towel and tooth brush. A patient’s relative rushed into the toilet so I had to wait again.

At 7 pm, breakfast in the form of scrambled eggs and five pieces of toasts came in. And a cup of water. A piece of orange.  I ate, famished.

Then I lay back on the bed, feeling very tired. The tapping tube for ascites wasn’t working because of the sarong I was wearing. I asked one of the nurses for help. She came reluctantly, “I don’t know, you wait till Monday when the doctor comes.”

“But I can’t wait, look at my belly, it is full of water and it is beginning to be difficult to breathe.”

“I don’t know. So you wait.”

I heard one of the nurses said to another one, “She came from rich Damansara Specialist, asks her to do it herself. If she doesn’t like it, go back to Damansara.”

Numbed. I didn’t know what was going on.

A sarong, easy to take off and 
easy to put on

Finally an Indian nurse came passed, I explained to her my condition. “Please help me.”

Looking at my sarong, she shook her head, “You are going to fall if you keep wearing it so low.“  So she pulled the tube up to the waist and tied it to the sarong top.

Throughout the whole weekend, I felt stuffed and bloated, no water was being drained into the bag I was carrying and no one wanted to look at the ‘tapping’ to see if the tube was blocked.

I learnt a big lesson: Never admit yourself into the emergency room on a Friday late afternoon if you can help it because no one will do anything over the weekend.

That Saturday was also the beginning of my witnessing 1Malaysia at the hospital.

Little did I know that more nightmares would be coming. 

By Ching Ching

A Memorable Day

One of my favorite noodle soups in the worlds

My sister and Lucy picked me up from Damansara Specialist after my discharge. They fed me with curry laksa in the office. I wolfed down the keow teow.  

Lucy, the expert in University Malaya, checked me into the emergency at 2 pm. We paid cash of Rm250 as deposit, then waited to be given a bed and then the doctor to check for referral. The routine is always blood test and x-ray before the doctor comes to see you and refer you to the right ward for treatment.

This is where the next stories about me occur

At nine pm, we were still waiting for a bed in the Gynea ward. My family came in without their dinners, rushing from work. All of us were tired.  The bed was only ready at 10 pm. Then we realized that there were many things I didn’t bring to give me comfort, eg, my own cup, a flask for hot water, a sweater as it was very cold, socks, and even crackers to eat when I am hungry. 

I was in a room with eight beds. One of the patients was given a heart pumping machine, the pumping noises disturbed me so much that I couldn’t sleep. When I asked to be transferred to other rooms, the nurses told me off. “The beds are the same, no rich or poor people. If you don’t like it, you can leave.”

That rude?

Little did I knew that it was the beginning of a nightmare I never thought I would see.

By Ching Ching

You Got This, Madam

The next few days saw me being given colonoscopy, endoscopy and echogram at the Damansara Specialist Hospital. I was given tests for hepatitis A, B, C, all kinds of TB, ultrasound, and more blood tests.

“Good news, you don’t have any of those things we are testing!” The surgeon congratulated me.

At one point, the surgeon wanted to give me a small intestine probe, but I remembered that I had barium just several hours before for x-ray, now Barium again for the intestines?At the operating table, I refused the gulp of barium from a nurse. I asked her why I was given barium twice in less than ten hours. I felt very weak and helpless, and knew that I should trust the medical care given by a private medical center which charges high for every treatment given to me. Who am I to question a surgeon with a high social status?  Despite the self doubts and the fear of anger retaliation, there was a small voice telling me to fight for my life. I was only asking for the reason, why couldn’t he explain to me and dispel my fear?

The surgeon came into the operating table, angry, “ I don’t want to treat patients like you. You are non-cooperative. I am a Datuk and I know what I am doing, either you do what I want or we are finished with you being my patient.”

“You haven’t explained to me why I have to take two gulps of barium within ten hours!” I shot back weakly, feeling stupid. What did I know about surgery and ascities. But something small inside told me to ask. Barium is not like curry laksa, it is radio active!

He walked off. I was left on the operating table. Cold and shivering.

A few minutes later, the nurse came in. “I am still not taking barium in such a short time.” I insisted feebly.

She went inside another room to explain my case to another doctor.I was then wheeled to the ultrasound room. This time it was a woman doctor. She smiled and held my cold hands, “I am going to do ultrasound on your belly, this is the computer which will show the images I am looking for.” Her reassuring voice dispelled my fears. She applied gel onto my belly, “This is a bit cold, the gel helps me to move the scanner smoothly,” she said.  Then she pressed a scanner onto my belly, “See? This whole section here is water.” She explained in a soft kind voice as she did the scanning, I began to relax and participate by asing, “What is this?” She gave me a tapping -- making, a small opening on my belly with a fibre optic needle to drain the fluid into a bag. “ You should feel better after several hours!” She assured me.

When I was wheeled back to my room, I thought to myself, “What a pleasant experience!”

There began my interesting journey with the ‘bag’.

For someone who has never been sick before, managing your own case and finance is completely new. I was enjoying the attention from two doctors, coming daily to see me, telling me the same thing. I didn’t know that for every visit, I was charged till an angel whispered to me, “Check your hospital bill before you agree to more.”

I asked for my bill. What? It was already Rm30,000, the maximum my insurance will pay for every admission. So when the gynaecologist told me the next course was to snip my ovary, since I didn’t need it to prevent ovary cancer, I stopped him, “How much will that cost?”: So when the gynaecologist told me the next course of treatment was to snip off my ovary since I didn’t need it and the surgery would prevent ovary cancer, I asked him, “How much will that cost?”

"Rm 15,000 would be my fees, besides operating theatre costs, nursing costs, medication costs, and support staff costs, you are looking at Rm 25,000!”

That night, I told my family and friends about this. Every one insisted that I moved out of the hospital and get a second opinion.

So I had a complete health check. By the time, I checked out, two weeks later, l they didn’t know what was causing the ascites except pointing at Mead’s Syndrome.: So I had a complete health check in this private hospital. By the time, I checked out of the hospital two weeks later, the doctors still didn’t know what was causing the ascites except pointing at Mead’s Syndrome. It is disappointing! And it spells the end of my trust to a private hospital.

By Ching Ching