Dying Thoughts

"My religion is simple. My religion is kindness."  Dalai Lama 


Many readers here hold Chang fondly in their thoughts. This blog seems to be part of their lives already. The day has come for us to move on. 

A reader "Anonymous" left the following comment"

"I wish to know in greater details Chang's thoughts or thought process just before his passing, if it's possible at all. Did he give much thought to where he was going / his after-life? Was it just nothingness? Was he just thinking about what he wished to leave behind without further thoughts where he was going, or was it that it didn't matter to him at all?"

From May 2, 2012 post by Chang "
"One thing about being a Buddhist is that we believe in rebirth. Another thing I do when preparing my death is to make a wish to be reborn in the human realm. Although I have not achieved any spiritual attainment, it is my intent to be reborn in the human realm as a male. After completion of my university education, I will go forth and enter life as a monk and continue my Buddhist practice. So I visualise it with intent and wish for this to happen in my next rebirth".

Buddhists believe that death is not the end of life. It is merely the end of the body we inhabit in this life, but our consciousness will still remain. It will seek out through the need of attachment, attachment to a new body and new life. Where we will be born is a result of the past and the accumulation of positive and negative action, and the resultant karma (cause and effect) is a result of ones past actions. 

In the past, there were times when readers debated with each over their religions. When the discussions were too heated, Chang consulted me about my view. At that time I said that he should focus on  the spirit of this blog and what he created this blog for. 

We  say that we respect one another, so this respect should also be shown through respect for one another's religions. While all religious prayers, chants and information done in good faith are most welcome, I discourage inflammatory remarks putting down others' religions. We have to deal with our own unhappiness over others' beliefs and take responsibility for our own feelings. True spirituality is about compassion, acceptance and peace, whatever religion we belong to. What is the point in calling oneself a Buddhist, Christian etc when one cannot show genuine compassion for another fellow human being?

In his last weeks of life, Chang was struggling to manage his pain. He could not talk much. As to his thoughts about dying, what he told me was that he was not fearful of the death itself but the pain.

I encouraged him to "go peacefully, in a positive frame of mind" and he nodded. I asked him how he was coping emotionally (meaning depressed or not, etc) and he said he was okay. The good thing is that he had learned to manage his emotions before he died. Our emotions are a reflection of our mind.

During our association, I always encouraged him to confront his emotions, dig a little deeper within to find the root cause of  whatever he was feeling at the time and deal with those emotions rather than repress them. Later, he told me he had learned this "technique" as he called it,  quite well. And I believe it helped him cope when he was dying.

(Updated by Chang's Friend)

Thank You Again

"The greatest gift is the gift of awareness"

I would like to thank those of you who have written to encourage me. The truth is that I took up this job with the sole aim of helping Chang complete his story.  I have not made any plans yet for this blog. Though I have always enjoyed writing, his shoes may be a bit too big for me to fill.

I have to admit that it was not an easy job he entrusted onto me.  During the last few weeks of his life, I followed his physical progress as closely as I could in order to update this blog. And I watched the dying process taking place day by day.  The physical changes, the deterioration and the suffering. Watching life unfold, having to process it in my mind and coming home to write about it.  The hardest day was on the day he passed on.

At the end of life, what really matters to you? Is it the money, the job title or career achievements? Would you panic then whilst on your death bed and wish that you had more time to live life differently? Have you been true to yourself, lived up to your beliefs and at least tried to live out your dreams?

Or is life just one day of struggle after another? Work, work and work. A life so full of responsibilities and obligations that we have forgotten what really matters, our heart? What have we done with our lives and the limited time we have on earth to benefit others? Because at the end of the day, nothing really counts but the way we have treated other people.

These were also some of the questions I posed to Chang then, in 2010, not out of judgment but because I felt these were useful questions to reflect on. He said then that he would try to live differently with the extended time he had. I also encouraged him to live out any unfulfilled dreams, as did many of his friends.  Contrary to what many people may think, I believe the process of dying a good death starts now when we are healthy. And, I believe that when Chang passed on, he left with greater awareness and a richer view of life. 

Let us also live in awareness every moment of everyday..

(Updated by Chang's Friend)

Conversations with Chang

I found out that Chang had kidney cancer almost a year after he was diagnosed. In his usual way, he spoke enthusiastically about the Gerson Therapy, the urine therapy and their benefits. He encouraged me to try out coffee enemas, drink juices and take the Gerson supplements. 

After listening to him, I finally asked him whether he had considered that healing could be more than just physical. And that healing encompasses mind, body and spirit. I also asked him whether he loved himself.  He was stumped and said "Isn't self-love narcissistic or attachment to oneself?" This turned out to be a really big question for him. 

Many people are afraid to love themselves, They somehow feel they are not allowed to. That self-love is self indulgent. They find it much easier to find fault with themselves. And to be harsh and unforgiving toward themselves for their imperfections and mistakes. They do not allow themselves the space to be themselves, to delight in their own company and to pamper themselves. Don't we all deserve a break sometimes? As human beings, we tend to swing to extremes. Does loving ourselves have to swing towards narcissm? What is narcissm? Narcissism is an obsession with ourselves, to the exclusion of other people -- both their needs, and their gifts which they want to share with us. Narcissism is not self-love.

Our self-love is a confirmation that we are lovable; therefore, we eagerly recognize and accept the love which is offered to us. If we lack self-love, we reject other people's love, because we do not recognize it, or we feel that we are not worthy of it. It increases our ability to love other people. It allows us to understand ourselves and know ourselves. We are not repressing anything from our own awareness.

 

I reminded Chang that Buddhism teaches the middle path and he could look at self love as compassion towards oneself. If we cannot have compassion towards ourselves, how then can we expect others to have compassion for us? How then can we know how to feel compassion for others. It starts with us.

And what does self love have to do with cancer? Because self-love is the pathway to healing. We need to learn to have a great respect for ourselves and a gratitude for the miracle of our bodies and minds. The science of energy medicine teaches us that our organs and other physiological systems sense and store emotions. The immune system’s intelligence observes feelings we have about ourselves, and can improve its health when we develop authentic feelings of self-love.

In the words of cancer survivor, Anita Moorjani, who came back from a near death experience in 2006. "Self love is the best medicine. I learnt from being at death's door that unless I loved myself, nothing else in my life could function at its best."  (Chang posted her story on May 11, 2012)

(Posted by Chang's Friend)

Exercise Caution

Chang had planned to write a post on his experience with HIFU but he did not manage to. So, I am writing this post based on the little information I have, of what actually happened in order that it may benefit  readers as well as those looking for alternative therapies.

On November 3, 2011 Chang wrote about the HIFU therapy. He said, "I am quite hopeful because it's minimal or non-invasive form of procedure. A patient can actually walk as early as 4 hours after the procedure.", However, the real experience in China was very different. He felt very weak after the procedure, was nauseous and was in quite alot of pain. In fact, he had a really tough time. You may read about his experience after he went for the HIFU procedure from postings he made from December 2011 onwards.

Six months after the procedure, this is what he wrote (ref post on June 29, 2012). "However, my experience with cancer pain only started in the last four months or so. In fact, it started after my HIFU treatment in China and I believe it has to do with the dead tumor tissues inside my right abdominal area and also the healing wounds of the tissues and blood vessels after the HIFU treatment"

He had also expected that the HIFU procedure would be able to remove the entire kidney tumour. However, it was only able to remove 90% of it. He discovered this fact only when he was there. 

It is not my intention here to speculate on what happened. We also have to bear in mind that after the HIFU therapy, he did not go back to China for follow up. He said that it was not necessary. He was also not closely monitored by a local doctor. Without a scan, he had assumed that the constant pain at his abdominal area was from dead tumour tissues after HIFU. In July this year, doctors discovered that the cancer had spread mainly to his abdominal area causing him great pain and later, breathing difficulties.

Even though we do our research, there may still be many things we may miss or be unable to anticipate, just from reading research material from the internet and books. In his own words. Chang said "What I want to say is that in theory, it may sound very good but in practice, it may not be so simple."

I urge readers to take the time to find out more information as well as get feedback from other patients on any treatment which they wish to pursue. Of course, we understand that cancer patients sometimes feel that they are running out of time. As for the HIFU therapy, researchers in Europe are still doing trials in its use for cancer treatment. But they are not sure how well this will work as yet.

(Updated by Chang's Friend)

Free Spirit

 
When I come to the end of the road
And the sun has set for me,
I want no tears in a gloom-filled room,
Why cry for a soul set free?
Miss me a little – But not for long
And not with your head bowed low,
Remember the friendship that we once shared,
Miss me – But let me go.
For this is a journey we all must take,
And each must go alone,
It’s all a part of the Master’s plan
A step on the road to home.
When you are lonely and sick of heart
Go to your friends that we know,
And bury your sorrows in doing good works,
Miss me – But let me go.
(poem by Henry Scott Holland)

Chang's ashes will be scattered in Cameron Highlands today in fulfillment of his last wish. He loved the Highlands and had planned to spend his time in retirement there. In his own words, he was a free spirit, happiest spending time in the cool climate of the Highlands.

Have a good rest, my dear friend.

(updated by Chang's Friend)

My Message of Thanks

 

Very few people, if any at all, knew that Chang asked me to be the custodian of his blog in the year 2010. A custodian is a person whom the blogger has entrusted to take over the blog when the blogger  is unable. When he was away for HIFU treatment in China, I  helped him with the postings. I asked him to find a substitute but realised that he had not done so after the blog was left unattended to. So, I decided to do my last bit for my dear friend and expected nothing in return. Therefore, I am  touched by readers who have taken the trouble to thank me. It was an honour being able to update for him and you. Thank you so much for your kindness and support. You have been great supporters of Chang.

Chang's Friend

He is Gone

 

He is Gone

 
You can shed tears that he is gone,
Or you can smile because he lived,
You can close your eyes and pray that he will come back,
Or you can open your eyes and see all that he has left.

Your heart can be empty because you can't see him
Or you can be full of the love that you shared,
You can turn your back on tomorrow and live yesterday,
Or you can be happy for tomorrow because of yesterday.

You can remember him and only that he is gone
Or you can cherish his memory and let it live on,
You can cry and close your mind, be empty and turn your back,                                               

Or you can do what he would want: smile, open your eyes, love and go on.

(poem by David Harkins)

Today is the third anniversary from the day Chang discovered that he was suffering from Stage 4 kidney cancer. Exactly three years, after that fateful day, Chang has passed away peacefully surrounded by his family at 12.10 pm this afternoon. His family wishes to inform that you may pay your last respects at: 

                            Wake: 11 & 12 September 2012 
                            Time: 7 pm onwards

                            Gui Yuan Funeral Parlour
                            Room 1

                            Jalan 229 Section 51A,

                            Petaling Jaya
                            46100 Selangor
                 
                           Funeral (cremation): 13 September 2012
                           Time: 2pm
                           Venue: MPPJ crematorium (next door)

May the roads rise to meet you,
May the wind be always at your back,
May the sun shine warm upon your face,
The rain fall soft upon your fields
And, until we meet again,
May the Lord Buddha hold you in the hollow of his hand
 
(adapted  Celtic blessing)
 


(Posted by Chang's friend)

The Final Days

It's hard to be prepared for death, be it our own or a loved one's. Too much is unknown about what dying feels like or what, if anything, happens after you die to ever feel truly ready.

Health professionals speak of “dying trajectories” that suggest how persons with specific diseases will die. For example, those with a terminal illness, such as advanced cancer, will show a steady decline toward death. Those with serious chronic illnesses may have peaks and valleys that sometimes give the impression of recovery.

 Dying involves a process in which the body gradually shuts down.  There are signs of dying, some of which are as follows:-

• Decreasing level of consciousness, possibly entering a coma
• Decreasing ability to communicate 
• Loss of ability to swallow
• Loss of ability to close eyes- whites showing

As the person moves closer to death, he sometimes slips into a coma. Coma is a state of  unconsciousness lasting more than six hours, in which a person: cannot be awakened; fails to respond normally to painful stimuli, light, or sound; lacks a normal sleep-wake cycle; and, does not initiate voluntary actions.  The person is still alive, but the brain is functioning at its lowest stage of alertness.

I was told that Chang stood up and hugged his mother three times yesterday. Then, during the early hours of this morning, he slipped into a coma..

Pain medication (morphine) continues to be administered. Apparently, comatose patients still feel pain because their brain is still functioning. (Belgian doctors discovered that some comatose patients develop the same "pain matrix" in the brain as healthy individuals do when subjected to pain stimuli. This gives further justification to medics administering painkillers to patients previously believed to have had no functioning pain receptor). 

He is breathing on his own and resting at home surrounded by his family, parents, brother and sisters. We continue to speak to him and his Buddhist friends were at his home, chanting to him. While we do not know what unconscious patients can actually hear, extrapolation from data from the operating room and ‘near death’ experiences suggests that at times their  awareness may be greater than their ability to respond.

The time is near.  Let us pray for a peaceful journey home for Chee Teck.

(Updated by Chang's Friend)

Not Good

I visited Chang this evening with the intention of reading your messages to him. He has deteriorated since last Friday. He did not open his eyes or make any sign of acknowledgement of my presence (which he used to when he got visitors). In short, he does not respond much. He tried to communicate with his family using the little whiteboard but no one could read his writing. Seeing his condition, I was worried that your messages may go unheard.  But I know he can still hear though he does not respond. So, I sat and waited for the opportunity to arise. 

And I am relieved and happy that it did. I have read your comments on this blog as well as the messages sent to upekahblogspot@gmail.com. I received one more email message after I left at 7pm. If I have the opportunity, I shall continue to read to him. I thank all of you who have written in. I am very grateful to you for sharing the kind words about Chang. I believe that the beautiful, positive words you wrote will help him in his journey forward.

I feel very sad but that is life, as he puts it. As I start to process what happened this evening, I realise that I had not written him my own message (except for the brief message thanking him on the post "Death and dying."). 

I really do not know what else to say. Goodnight.

(Updated by Chang's Friend)

Message for You

How is Chang? In his own words "very bad" and "very tired". He has stopped taking porridge. Now, he is on dextrous intravenous drips administered by the hospice nurse. He sips ice water, takes some watermelon and sometimes, a bit of yoghurt. 

He is mentally alert but  is too weak to read updates on this blog. So, I offered to read the previous two posts to him. He listened closely as I read and gave a slight nod here and there  I also noticed him wiping away what I suspected were a few tears. After I finished, he scrawled the following message on the little whiteboard, in response to your comments:-

1. My daughter has technically graduated. She will receive her scroll

    in September

2. I am touched by the readers' comments.

3. I will miss all of you but that is life.

I enjoyed reading for him and I hope he continues to take an interest in this blog. I would also like to invite readers to start talking to him especially those who have been keeping silent. If not now, when? If you want a message read to him privately, you may send it to upekahblogspot@gmail.com

Recall his good deeds and how he has contributed, touched you and how his life has made a difference and benefited yours. He is still contributing in his silence albeit in a different way.

(Updated by Chang's Friend)

Death and dying

"We are alive, therefore we will die." This is the simplest, most obvious truth of our existence, and yet very few of us have really come to terms with it.

Although intellectually we all know that one day we shall die, generally we are so reluctant to think of our death that this knowledge does not touch our hearts, and we live our lives as if we are going to be in this world forever. However, to cancer patients, death is never far from their minds.

It was in July that Chang told me that his condition had deteriorated and that he was preparing for death. At that time, I didn't want to encourage what I assumed were negative thoughts. (which he battles with now and then). We all do not wish to hear our loved ones or close friends tell us that they will be leaving us. It is hard to imagine a world without them in it. We sometimes forget that  our loved ones' wellbeing and wishes are paramount. And when the time comes, to let them go peacefully and without guilt.

Chang told me that he had to counsel a few friends who came to visit him over the Raya holidays. These friends had told him to "hold on". Though, these friends may have meant well, Chang was obviously irritated.

Yes, talking about death is taboo to many people. Yet without talking about it and facing it honestly, how can we prepare the dying as well as ourselves for the process of dying? How do we help the dying to die well?

We do not know what the future holds but Chang has been mentally preparing himself since he discovered he has cancer.  He said that he has no regrets about his efforts. To quote him in an earlier post titled The Joy of Dying in Peace, "While, I would certainly like to find a cure for my cancer, there comes a time I will recognise that it's no good. I have tried all that I know (of course, you can say there are many more I have not tried) which I think will work for kidney cancer. I am satisfied with my actions and prepared to move on".

"I take a different view. I am actually preparing for this day so that I can die peacefully. To this end, my doctor loaned me a book called The Joy of Living and Dying in Peace by His Holiness, The Dalai Lama. To approach death without fear or regret and welcome our passage of death. To live peacefully you must also learn to die peacefully."

I will miss him dearly if he goes,  But I also wish him, what is best for him and a peaceful journey ahead. And I ask for forgiveness for my imperfections and thank him for his generosity, support and being my wonderful, wonderful friend.

(Updated by Chang's friend)

Update

Yesterday, when I visited Chang, he complained that he has little energy. He had barely eaten, saying that his throat feels blocked. He had written instructions for his wife to inform the Hospis Malaysia nurse to administer intravenous glucose drip (to boost his energy levels) when she visited later in the evening.

When I saw him again today, the glucose drip had already been administered. I was told that the nurse would be visiting again this afternoon regarding his constipation problems.

He cannot sit for long periods. There's not enough flesh on his backside. After some time, he would stand for a minute to change position.  Today, I saw him stand up and put his arm around his mother's neck for support. Then he leaned his head toward her, like a child seeking comfort from his mother. In that moment, I saw so much  tiredness and weariness on his thin face. Anyone watching would feel for this man.

He likes alot of gentle massages as a relief. Today, his sister massaged his swollen feet with medicated oil. Then,  he asked his mother to give him "guasa". Guasa is Chinese language. Gua means scrape. Sa means poison or disease that will appear when  scraped, like red rash or bruise. The Chinese believe that it helps to detoxify and eliminate wind from the body. 

I agreed to update this blog on his behalf because I always thought that this blog holds alot of meaning for him. It is a documentation of the most difficult and lonely period of his life. Yet, it has also been a period of growth and awareness. He has mustered all his knowledge and skills in trying to heal himself, an area totally new to him.. He has put hours into research and poured his heart into writing this blog, On his busiest days, he made time to provide updates. It would be such a waste. So many people still wish to reach out to him and send him their prayers, I shall continue for as long as there is information for me to go on with.

As a friend, who has seen him go through some of the ups and downs during his cancer journey, I am learning each day. Sometimes, he write a few lines on a little whiteboard using a marker pen for me and I have an idea what he wants me to post. On other days, I would like to hear him talk but he does not have the strength anymore.

(Updated by Chang's friend)

 

Managing The Tough Times

For the past few days, Chang has been eating little and not sleeping well. Besides pain, he is also struggling with severe constipation. He has not had a bowel movement for the past 14 days.

(Before writing about this topic, I asked him if he really wants me to post about his constipation problems and he said yes, so here goes....)

Constipation is a common and frequently troublesome symptom in patients with advanced cancer. Despite its prevalence, constipation can still be an overlooked symptom, which often receives little attention until significant problems occur. Often, multiple causative factors are present:-

o Reduced food (including fibre) and fluid intake

Patients with advanced cancer often have a reduced appetite for a variety of reasons, with fibre in particular being difficult to tolerate: 

-  Some tumours produce chemical substances that suppress appetite.

- The slowdown of many bodily functions including gastric emptying, which results in early satiety and decreased hunger;

- Nausea and/or vomiting are associated with an aversion to food;

- Oral pain when attempting to eat and drink. Possible causes include oral thrush, mouth ulcers, mucositis;

- Only able to tolerate a low residue diet and are too weak to chew for any length of time

o Reduced abdominal and pelvic muscle power

Patients with advanced malignancy who are too weak to give the push necessary for defecation. 

o Reduced mobility

  

o Constipating drugs
(e.g. opioids, drugs with anticholinergic action, antagonist anti-emetics, iron). Opioid use is strongly associated with constipation in patients with advanced cancer. Opioids have a constipating effect whether given orally, sub-cutaneously or transdermally, although the incidence of constipation may be reduced with non-oral administration

 o The cancer itself

 If a tumour is pressing on the nerves in the spinal cord, it can slow down or stop the movement of the bowel and so cause constipation. Tumours in the abdomen can compress, squeeze, or narrow the bowel and rectum making it difficult to have a bowel motion. Or a tumour in the lining of the bowel can affect the nerve supply to the muscles and cause constipation

 

o Environmental factors

Environmental factors should not be overlooked. Patients unable to get to the toilet unaided may be reluctant to ask for assistance due to embarrassment or a desire not to bother their caregivers.

Treatment of Constipation

Oral measures such as laxative therapy are usually the firstline treatment of constipation. However, rectal measures such as suppositories and enemas can bring about quick results. An enema is a liquid that is squirted into the rectum and colon via the anus whereas a suppository is an easily melted pill or capsule inserted in the rectum.

In  Chang's case however, laxatives have not worked. In cases of constipation it is important not to wait if there is no bowel movement for a few days. He told me that he was too embarassed to accept help during an earlier visit to the hospital. (when a nurse asked him if he wanted an enema administered). So, during his recent stay at the hospital last week,  he asked for assistance and this time, the nurse administered the enema for him but it was unsuccessful. Back home, he has tried what he calls the "tin mining approach" ie using water to spray up the anus but has still not been successful.

The Hospis Malaysia nurse will be visiting tomorrow. Hopefully, there will be a breakthrough.

(Updated by Chang's friend)