Back Home Again

Chang was discharged from the hospital today. He did not sleep well last night and ate little today. However, he enjoys eating watermelon and was having some when I visited him.

There have been offers to help from readers, Tan Ai Wee and Anonymous. Actually, Chang needs to replace the 3 pints of blood given to him at the hospital. If you are able to donate blood at the hospital during office hours, Monday to Saturday (except public holidays), please contact me at upekahblogspot@gmail.com. Thank you, thank you to all of you for your kindness.

Chang has also read your comments and wishes to thank all of you for your prayers, words of comfort and help. A reader asked whether he is able to walk. Yes, he is able to make short trips to  the restroom with assistance.

Happy 55th Merdeka Day to all Malaysians! It is a long weekend. Rest, relax and rejuvenate!

(Updated by Chang's friend)

A Strong Man Indeed

Yesterday, Chang decided to go to the hospital because of breathing difficulties. He was thinking that the problem could be due to a buildup of fluid in his lungs and that a thoracentesis or pleural tap  would help. A pleural tap is similar to an abdominal tap in that it helps drain the excess fluid out but instead of the abdomen, its from the lungs. However, the latest findings from the hospital is that his breathing difficulties are not being caused by fluid buildup but by tumours which have displaced his liver and pushed his diaphragm up.

He is still in the hospital for another day of observation. He has been given another 3 pints of blood since last evening when his red blood count dropped to 5.3. 

He is currently on 20 mg (or 10ml) liquid oral morphine five times a day and also wears a 25 mg morphine patch. His family helps him keep a record of the morphine he takes. Morphine has its side effects so he has been prescribed with laxatives and drugs to manage these side effects. Despite taking laxatives, he is still having quite bad constipation.

His taste buds have also been affected. Foods which used to taste so delicious to him before, taste radically different now, probably as a result of these drugs. For example, plain water tastes sour so he adds ice cubes. Carrot juice tastes like ginger root juice.  He is able to tolerate apple juice and lemon juice. His diet consists  mainly of vegetarian porridge, Enercal and foods he tries and finds palatable.

To say that it is a tough time is really an understatement but he has been very, very strong. I salute him and admire him immensely. I think many of us do.

(Updated by Chang's friend)

Friends

During his cancer journey, Chang has made many new friends as well as received the support of so many across the globe, both through this blog as well as through his daily life,  Some have written to him asking for information and advice. There have also been offers to help from readers in countries such as New Zealand and Hong Kong, to name a few. He has been touched by many, just as many people with loved ones or friends in similar situations have been touched by him.

On a daily basis, there is a beautiful lady who cooks and delivers to him delicious porridge. His friends from different faiths, ex-colleagues, Khadijah, Yeong and many more have been there for him. I am honoured to contribute but a small part. Names are not important at this stage. Chang is.

He has been having breathing difficulties. He is spending the night at the hospital and has received a pint of blood. As you already know from previous posts, he has low haemoglobin levels. Hopefully, he will be discharged tomorrow. 

Let us all dedicate our prayers and thoughts to him, that his suffering may be minimal. And that his mind remains strong and steadfast.

(Updated by Chang's friend)

Hanging On

In his last post titled "The End Is Near", Chang has said that he no longer has the energy to continue updating his blog and that his August 18 post would be one of his last. The response from his readers and friends have been overwhelming, many requesting to be updated on his condition.

During my last visit to him, he said that there are no more stories to tell his readers. Instead of just waiting for more stories, I believe all of us just care.  We wish to know how he is doing and we wish to provide our continuing support, prayers and love to him during this very, very difficult time. As his friend, I shall endeavour to provide some updates about his health and well being.
He checked into UH on Wednesday, 25 August to get an abdominal tap done.

What is an abdominal tap?

An abdominal tap or paracentesis is a medical procedure in which a small tube is inserted through the abdominal wall to remove fluid from within the abdomen. Inside the abdomen is a membrane called the peritoneum. The peritoneum covers the organs inside the abdomen and produces a fluid which lubricates these organs and helps them to glide smoothly over one another. Sometimes too much of this fluid can be produced causing discomfort. This is known as ascites. 

 

 There are several possible reasons for this build up of fluid:
• If cancer cells have spread to the lining of the abdomen they can cause irritation, leading to the build up of fluid.
• If the liver is affected by cancer it can cause a blockage in the blood circulating through it, leading to a build up of fluid in the abdomen. Alternatively liver damage can change the body’s fluid balance, causing fluids to build up in the body’s tissues, including the abdomen.
• Cancer can also affect the lymphatic system. This is made up of the tissues and organs that produce and store lymph, as well as the network of vessels carrying lymph fluid throughout the body.

What are the symptoms of fluid build up?
The symptoms of this build up of fluid include:
• Swelling of the abdomen, with associated pain or discomfort.
• Difficulty in moving or sitting comfortably.
• Breathlessness.
• Tiredness.
• Nausea and vomiting.
• Indigestion.
• Reduced appetite.
• Altered bowel habit

Abdominal tap is usually done under local anaesthesia. It is an outpatient procedure, which means you can go home after it is done. An ultrasound is sometimes done to locate the area where the fluid has collected and a mark is made on the skin where the paracentesis tube is to be inserted. A small tube is then inserted into the abdomen and is sometimes secured by stitches. The fluid (ascites) will drain through this tube into a drainage bag. You will be able to move around whilst the fluid is being drained into the drainage bag (Sometimes doctors also put an internal tube under the skin to permanently drain the fluid and prevent this from constantly happening). 

However, for Chang, what was supposed to have been a 25 minute procedure turned into a 25 hour ordeal. He was told that there was a shortage in manpower at the hospital that day and and ended up putting up a night at the hospital. The next morning he was wheeled to the operating theatre. There was initially no bed there and Chang was wondering if they were intending to perform the procedure with him in the wheelchair. After that was sorted out, they administered the anaesthetic but horror of all horrors, before the anaesthetic had time to take effect, they jabbed the needle into him. He screamed in pain. It was, all in all, a nightmarish experience for him! He came back home on Thursday evening.

He spends most of his time resting in bed. He is weak and has lost quite alot of weight. However, he has an army of well wishers and commented that he received more visitors during the recent Hari Raya than the Chinese New Year.

(Updated by Chang's friend)

The End is Near

This will probably be one of the last few postings I will be making unless my condition improves.

I am really very very tired and I realised writing even for a post takes up a lot of energy.

I thank all of you being there to support me especially during this most difficult time of my life.

I will end this post with the following thoughts:

Clinging to life against the inevitable is to create more suffering
There is no life without death
The good and bad comes to decay
All things shall come to pass.

Do not waiver your mind when the test is near
Hold steadfast in your believes
When the road forth is no more
Embrace with grace that the end is near.

May all of you be free from danger, free from mental and physical suffering. May you all be well and happy always.

(Last Post by CT Chang)

The Show Must Go On

I wanted to update two days back  but due to the pain on my abdominal area, I am unable to sit for long. My condition has not improved. Many of your have contacted me and I am sorry to have kept all of you in the dark.

The abdominal abstention is really giving me a lot of problems. Not being able to eat and also pain all over the body and constipation. Last Tuesday, I did a tapping at Hospis Malaysia and the nurse managed to draw out 2.7 liters of water. But by the next day, my abdominal area is about 70% full back. Looks like I may have to do daily tapping and I will be discussing with my doctor about this and select a hospital to implant a tube on my abdominal area.

I have not given up yet. I am just doing what I can and the focus now is to control the stomach abstention. When this is done, the next step is eat, at least have enough body to mount a fight back. Three days back I developed an instant sore throat and now, I even have problems drinking water. I have stopped all medications since June 2012 and now only on Hospis palliative care.

Feeding Frenzy

Since discharging from the hospital one week ago, I have been on a feeding frenzy.  I have lost so much of weight because of the abdominal distention that physically I look like a 12 year old buy but with a stomach of a seven month old pregnant women. I have been taking all kinds of nutritional foods, especially liquids ones since I still have a limitation of taking in solid foods. I have lost my sense of taster about two months ago now and my food either taster sour, bitter, salty or sweet. When I closed my eyes and you give me food to eat, I won't be able to tell what food you just gave me. They all taste lousy and hard. So, it's been very challenging to gain back some weight. Even drinking water taste sour!

My swellings on my legs have improved a little with the new medication that I am taking but it's still too slow. My abdominal distension is getting bigger back and I need to go for another tapping this week, hopefully, I can a get a slot tomorrow. It's painful and uncomfortable.

I am still suffering from cancer pain because I am not taking the optimal painkillers because of the side effects of opioid drugs. It's a trade-off I got to live with for now if not my stomach functions will be severely impaired.

Thanks again to Khadijah and Yeong for bring me some herbs and medication to deal with the legs swelling and stomach distension. What a friend to have when I needed help most. They have been constantly by my side encouraging me on.

Getting Rough Ahead

I have been plagued with fatigue the last few days so much so I am sort of spent most of my time lying on the bed, immobilised. Although the hospital managed to drain about 3 liters of fluids from my abdominal area, my doctor has warned me that it will be refilled and I will have to come back for draining or tapping a few more times. Yesterday, I was so tired that I have very little strength, much like a diabetic patient suffering from lack of sugar. So, immediately I made myself a honey lemon drink and managed to get some energy back.

This morning I will be doing a follow-up with my doctor at Tung Shin Hospital and will request that she write a recommendation letter for me to do the tapping so that I can do the procedure at other hospitals. In view of the cost involved and the frequency that I need to do tapping, I am thinking of going to Government hospitals for the procedure. Subsequently, I also found out the Hospis Malaysia also provide such service. In my case, I think I need to do another tapping this coming Tuesday to relief the pressure of the fluids in my abdominal area.

I don't have the energy to write longer post now days, so what I will do is to write shorter updates. I like to thank Khadijah and Yeong for baking me a carrot cake and also making the very aromatic Gomito pasta. I had a very good dinner last nite.