My son’s heart

I recently saw a documentary on television, featuring my former heart transplant patient Daisy, who had survived an impressive 26 years after the transplant, making her the longest female heart transplant survivor in Singapore. From the programme, I learnt that she had died in March 2017. Her story was special as she had beaten all odds to survive. She had met a traffic accident and her right leg had to be amputated. Then a virus attacked her heart not long after, and she found out she had to undergo a heart transplant. Her donor was a military personnel and a young person. His mother gave consent at the very last minute to donate his organs. Daisy successfully completed the battery of tests for a compatible match with the donor. She endured the seven hours of surgery and was placed in intensive care. After a few months of rehabilitation she still had to remember to take her anti-rejection drugs to ensure that her own defense system would not reject her donor’s heart. The anti-organ rejection drug was very expensive, and she did not have the financial means to afford them. I remember this well because as a new MSW on the job, it was very challenging for me to learn the ropes on the application requirements for various social and financial assistance schemes. I left the job not long after and therefore did not have the chance to follow through on the progress of her case.

It was interesting to know that she even had a chance to meet the donor’s family. The protocol at that time did not allow for contact with the donor’s family. In the documentary, the donor’s family members seemed to have known her very well, and had even invited her home on different occasions. The donor’s mother remarked that she accepted Daisy as she realized that her son’s heart was now a part of Daisy. Somehow, Daisy also became more tom-boyish in appearance after the transplant. She took good care of the donor’s heart. She lived a simple life, in a rented HDB flat and had a job as a book binder in a sheltered workshop. She received a small sum for her income and thus was also supported through other welfare provisions.

Another patient of mine spent a fortune to get a heart transplant in Australia and managed to live for 23 years thereafter only to find he needed a kidney transplant. The anti-rejection drugs had many side effects but with new drugs, transplant patients do live longer.

I wonder if in I were a similar predicament, would I be willing to spend a fortune for an expedited transplant surgery, or wait in line indefinitely to receive a matching donor’s heart? Even with an organ transplant, what quality of life would I have? These are tough questions, perhaps only with a clear purpose of life in mind, can one make such complex and critical decisions. Still, I wonder if I would choose to live or to die naturally, letting the disease take its course? Only time will tell, what final decision I would make, if I ever had to.

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Private Collection

Recently, I had been introduced to books that touched my heart. This one,“When Breath Becomes Air” by Paul Kalanithi, a talented neurosurgeon who was diagnosed with 4th stage lung cancer at 36 years of age, was especially moving. His brilliantly written book explores his death challenge coming from that of the doctor-patient relationship, first as a doctor, then as a patient. At the end of our lives, everyone has to face death. He wrote, “I began to realize that coming face to face with my own mortality, in a sense, had changed nothing and everything.”

This statement also rang true from the lives shared by my dying patients who had taught me to live better so that I would have fewer regrets especially at the end of life. These days, my free time is spent engaging in interests like reading, joining in different workshops offered by the National Library or the National Arts Council. Just last week, I attended a workshop called “Cabinets of Curiosities”. It was an interesting way of looking at our own collections. I am sure everyone has their own collections that bring back memories from the past. This workshop brought to mind one of my late patients who had an interesting collection.

Mdm Choo was a retired teacher who lived alone with her helper in a five-room HDB flat. She had two grown up sons living on their own. One was in England working as a Fashion Designer and the other son was teaching in one of the local Universities.

Mdm Choo suffered from a relapse of breast cancer that had spread to her liver and bone. She was bed-bound and lying on the hospital bed when I was first introduced to her. I found out that she enjoyed listening to Christian music, especially hymns. So I would play them from the handphone for her to listen during my visits. She enjoyed listening to the hymns, and we started a conversation on which hymns she would like to be played at her funeral. We finally chose three special hymns that were dear to her heart. While she could still talk, a voice recording was made so that her sons would know her wishes.

I was surprised during one visit, when she decided to show me her collections. This one consisted of three handmade dolls clothed in different sets of clothes that could be changed. She revealed later that she had three miscarriages and in her heart, she knew that they were girls. She had named each of the dolls, and so maintained a relationship with them as daughters whom she had lost. One day, she told me she would be meeting her daughters soon. Not long after that meeting, she passed on peacefully. Her sons honored her wishes, playing the three hymns she had selected, at her funeral service.

Falling apart

I have been procrastinating writing this blog due to a cracked lower molar that left me struggling with pain. Then a friend loaned me a book “Being Mortal” by Atul Gawande, which made me more aware of my own aging process and my mortal being when things fall apart.

These two events reminded me of my former client Mr Richard, who was a retired major in the Armed Forces. He worked hard and rose from the ranks even though he had only a Senior Cambridge certificate. He was very fit as a combat soldier and was assigned many different positions. His last position was the officer-in-charge of enlistment of national servicemen.

During his retirement , he travelled to many places and countries with his wife, a primary school teacher. He had 2 children – a son and daughter , both married and living on their own. He was very fond of his daughter who lived in South Africa with her husband and one five- year-old girl.

One day, he had an upset stomach and he went to the hospital for an investigation. Being a pensioner, he was admitted to the class A ward after discovering he had cancer of the colon. Soon, the hospital seemed to be sending him for more operations and treatments. His operation led him to discover that the cancer had spread further and he was referred to the Home Hospice team.

Mr Richard was referred to me by the hospice nurse as he appeared to have depressive symptoms. I chatted with him about his good old days as we shared some common experiences. He was happy with my visit and invited me to come more often. He was very appreciative of those visits and even invited the whole team for a special lunch with him and his wife. It was probably one of his last meals when he still could eat.

During one of his hospitalizations when I visited him, he requested to drink coke. His diabetes was uncontrolled and I hesitated for a while. Then, he told me he knew his time was short and he would like to enjoy his favourite drink. I gave in to his request and saw the big smile on his face. He shared that what he desired most was to go in a comfortable home environment with pain controlled and surrounded by his loved ones.

A family discussion with his wife followed. She agreed to his request and loaned a hospital bed to be placed in the living room. He had special custom-made removable ramps so that he could be wheeled to his lovely garden where he enjoyed reading his morning newspaper. During the last two weeks of his life, his wife resigned from her teaching job to spend more time with him. He communicated with his daughter and talked to his favorite granddaughter in South Africa via Skype. His son and daughter-in-law also visited him more frequently. In the end, he passed away peacefully in the presence of his loved ones.

How many of us would wish for an ending like his? He had the financial means and hired 2 helpers. He was well supported by the team in ensuring his pain was well controlled. One valuable lesson I learnt from him was to be financially well, as he had ensured he had the means to do the things he desired. He was very fortunate to have a family who supported his decision to pass on at home. This is also the desire of many elderly clients I have met in the course of my work.

A Miracle

What is the most difficult life event anyone might recall? For me, it was probably seeing someone in my own family facing death. My sister Emily was diagnosed with Lymphoma in 1989. At that time, I was still working in the Air Force as a Manpower Officer of two training schools. One evening, I received a call from my brother-in-law informing me that my older sister had to undergo open heart surgery. She needed people to go to the blood bank to donate blood.

I was shocked at the news! My sister had been healthy as far as I knew. She had 2 daughters; one was thirteen years old and another just 3 years old. I was glad that, with my work and social connections, my colleagues who were strong national servicemen quickly volunteered to go to the blood bank to donate their blood. The cancer growth which was found in the lymph nodes near to her heart area were removed. After the open heart surgery, she had to undergo an abortion as she was pregnant with another child. The doctor told her she had to undergo chemotherapy right after, and the baby would not be able to survive the chemotherapy without any harm. Chemotherapy was needed to kill the remaining cancer cells in her body.

She must have been heart-broken at that time. However, she kept a brave front and was determined to beat the cancer cells! She went through several cycles of chemotherapy till all her veins collapsed. I visited her once and saw that the doctor had to use the leg veins as a final resort. Throughout the whole ordeal, she endured the treatment. Her recovery was a miracle as she turned to God for help at a time when medicine could only do so much.

Perhaps, it was this witnessing of her suffering that made me return to medical social work after my 6-year contract with the Air Force. Up till now I have avoided talking about the incident with my sister. Each year as I celebrate her birthday in July, I am so glad she has proven to me that God has been gracious in preserving her life for a purpose. It has been 28 years since the day of her diagnosis. I can only give thanks to God for such a miracle. Hence, one should treasure each day with our loved ones while they are around and with us!

Siblings’ conflict

Recently, we have been bombarded with newsflashes and all kinds of public opinions on the prominent siblings’ quarrels. I too have many siblings, and quarrels are bound to happen! I came back recently from a wonderful retreat and church camp, and was looking forward to slowly eating my beloved sugar-free chocolate that a dear friend had bought for me from Canada. Lo and behold! I discovered that it was missing from the refrigerator in spite of my efforts to hide it well! When I asked around, my older sister said she had eaten all of it at one go during one of her nightly hunger pangs when she could not sleep. My heart saddened and I felt angry. I pondered over the matter for a few days before deciding to forgive her as her birthday came and went.

This matter also brought to my mind the experience of a dear client of mine with regard to her siblings. Miss Doris Yeo was a shy and quiet person. She hardly raised her voice at anyone. She was always generous and selfless to others, as the eldest child of the family. As a spinster, she helped to look after her ageing parents and also helped to take care of her niece and nephew when they were young. In fact, she gave up her job to do it. Doris bought a 4 room HDB flat and was looking after her dementia-afflicted father and depressed mother. At the age of 58, she was diagnosed with colon cancer and it had spread to her bones. I was introduced to her by my palliative care team. She was reserved and it took her a while to accept my presence. She had 3 other siblings, all married and living apart. Her closest sibling was her younger sister, Agnes Yeo. Agnes’ two children were cared for by Doris and they lived in the nearby block of flats. Agnes was an insurance agent and would drop by to check on Doris’ health condition.

First disagreement came about as Doris wanted to keep the diagnosis from her parents. Her father’s behavior became an issue as he would go wandering around. He also had difficulty controlling his his bladder. Her mother’s nagging at her poor appetite was also bothering Doris. After much discussion among the siblings, the decision was that her father could attend day care so that her mother would be less stressed cleaning up after him.

Second disagreement came on the issue of hiring a domestic helper to look after her aged parents and Doris as she was progressively getting weaker. Doris was used to being in control of everything. Suddenly, she felt helpless knowing that a foreigner was coming into her home. In our conversations, I highlighted the possibility of her siblings wanting to do their part in caring for her and her parents. All her younger siblings were glad to be able to contribute to the expenses of hiring the domestic helper. She finally agreed to the plan.

Family discussions were also held to educate family on the progression of her illness and prepare them that more help would be needed to care for her. Also the option of going to inpatient hospice was discussed. However, Doris verbalized that she wished to remain at home in her passing. This request was respected and her siblings wanted very much to carry out her wishes.

Third disagreement came with regard to her funeral arrangements. Doris wanted a sea burial while the family wanted her to be cremated and her ashes to be kept at a Buddhist temple. Agnes said she had no knowledge as to how to go about doing the sea burial. I gave Agnes a few funeral companies to enquire on the arrangement.

Family members were finally able to talk through the issues and come to a consensus as to how to help Doris in fulfilling her wishes. Finally, Doris was able to pass on peacefully at home in the presence of her family members and had a sea burial according to her wishes.

A Labour Day’s story

Today is first of May and it is a Public Holiday (Labour Day). A day of rest for the labour we had put into our work. However, one of my previous jobs; I remembered having to catch up on my recordings at work. Not something that I am proud of but it was a necessity to keep up with the pace of work. I often dread myself for having so many holidays burnt over work. I am glad this is a thing of the past. I have now freed myself over materialistic pursuits and more relaxed at my part time work.

Today, I chose to honour the lives of my clients and patients as they were called for their generosity in sharing their experiences and journeys with me. One particular patient, Mdm Lim came to mind. She was very candid about her life. A divorcee in her late 30s and single handledly raised her two sons. She had little education and was doing three jobs just to save enough money to buy a 3 room HDB flat.

When I was first introduced to Mdm Lim, her stomach cancer had spread to her liver and lungs. She was still working part time at the coffee shop taking orders of drinks and cleaning the table. Often we would meet at the coffee shop where she worked during her lull period when it was less busy. Over a cup of drink, we would converse over her days and her concerns over her two sons; one who was serving his national service and the other working in the police station as constable. She was proud of her older son who described as more sensible and hardworking.

Toward the third week of our first meeting, she received the bad news that the cancer had spread further to her bones. Shortly after, she had to quit her job at the coffee shop and rest more at home. Occasionally, her sisters would drop by with groceries and to check on her. Still she was very positive and watching her Taiwanese drama in Hokkien. Her sister had bought for her the DVD for her to watch at her own leisure. She shared her life story was like the drama played out in her struggles against a marriage which she suffered till she could no longer stand it. It took her a lot of courage to divorce and raised her two sons. However, she had no regrets over the matter.

Then, she told me that her younger son, just two months short of him completing his National service was getting married. As a matter of fact, she decided to give up her master bedroom so that her younger son and his wife could stay in the flat. She moved to the second room to stay with her older son.

During her days at home , she still did quilts; from baby covers to bedspread covers and her older son helped her to put them up for sales. She was very proud of her fine sewing skills and the different designs she made.

One day, she asked me if I know of any lawyers as she would like to make a will and instruct the lawyer on how to distribute her little assets she had. She took actions quickly knowing her time was short. She also spoke of her wish to go to inpatient hospice rather than to die at home. She spoke of how she longed to rest from all her labour and be freed from the pains she was suffering. Yet in front of her children, she put on a brave front enduring the pain till that final day when she had a fever and was admitted to the hospital.

The next day after her admission, she passed on peacefully. I met her older son after the funeral and he spoke of his mother’s love for them. He also promised to live harmoniously with his younger brother and his sister-in-law honouring his mother’s wish.