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