Terminally ill.

Terminally ill! Dad had aggressive incurable liver cancer. His days were numbered! Doctors told us it could be as short as 6 more days and 5 months at the most! The news hit our family like a bomb! We had no idea what to do. The following is a rough chronological record of the 7 weeks we spent with Dad before he went home to glory.

It is my desire that through this record, readers will be better prepared to help loved ones through a terminal journey. There were many unexpected beautiful family reconciliation moments during this painful journey. These last 7 weeks was Dad’s last lap and definitely his best lap! 

1st July 2020:   Our family heard the doctors' diagnosis. Dad was discharged the next day.  The treatment and medication recommended by 4 doctors differ. We were confused as to what medication and treatment to best use for Dad. However, several of the doctors told us we should let Dad know his terminal disease as soon as possible although they did not tell us why.

I texted several doctor friends to ask for advice. Two doctor friends very kindly called me back to advise me on Dad's condition. A church friend Cheng Yee (CY)who was a retired head matron from the UK texted me to advise that the Selayang palliative care unit could be very helpful in this final journey with Dad based on her experience with other cases. That night, I researched on palliative care in Malaysia and found out that indeed the key trainer for palliative care Dr. Richard Lim is based in Selayang Hospital. Dr. Richard Lim was responsible for training palliative teams in 20+ other hospitals in Malaysia in this field. He is also one of 3 key trainers in palliative care in South East Asia. 

3rd July: Dad had very intense pain at about midnight. He told the family he would rather die if he had to deal with such intense pain. It was traumatic for us to see Dad suffering because the painkiller worked only after 40 minutes. Meanwhile, my daughter Sue Ann contacted her doctor friends for more advice. I asked the Yeong family to pray that Dad and mum would consider going to the palliative care unit at the government Selayang hospital as our family always strongly preferred the private hospitals. My youngest sister Irene helped to get a referral letter to Selayang Hospital early that morning.       

Since we did not know how to manage if dad had another pain attack that weekend, I intended to persuade my dad to try SPCU. Mum immediately stopped me, saying dad would never consider a government hospital. Dad however told mum he wanted to hear me out. To my surprise, after I had shared calls and texts from my doctor friends and my research on Dr. Richard Lim, dad agreed to go.

At the hospital, Dr. Loke spoke to dad in Mandarin and examined him while another doctor keyed in notes and information from the medical letters. Later Dr. Richard Lim also examined dad and put him at ease by speaking in Hokkien.  We received the medication and instructions on how to care for dad. We reached home in time for lunch that day. On the same day, I received a call from Hospice Malaysia in Cheras (HMC). They made an appointment to visit dad. At this point, we had not disclosed the actual terminal situation to him.

That first visit to register ahead with Selayang PCU is important. This allows the doctors to key in all the data about Dad’s medical condition based on physical assessment, medical reports, and scans from his earlier doctors. Registering meant I could call their careline during working hours and speak to a doctor and ask for medical advice. In these 7 weeks, I have called the palliative team more than 25 times. Each time I spoke directly to doctors and received immediate competent advice.  Registering also allowed dad immediate access to palliative daycare during office hours without the long queues associated with most government hospitals.

5th July Sunday: CY visited our family at home in Setapak. She taught our whole family how to handle Dad's medication. We made carefully handwritten notes on the printed notes printed for every single sibling. She advised us to draw up a duty roster (married siblings) to assist the main caregivers - my brother Chai and his wife Kuan who lived with parents. Her professional help made us feel more confident.

Family learning up Dad's medication and treatment from Cheng Yee.

Dad's initial 10 medication clearly labeled

                                                  Handwritten notes on Dad's medication help us

Dad’s major pain episodes reduced visibly after that first visit. We were taught to always ask him what his pain level was and to administer painkiller at level 5 as it would take some time for the painkiller to take effect. Dad’s energy level improved and his earlier breathlessness had disappeared.

A few days later we noticed the swelling on his feet and legs gradually increased.  I called SPCU care line and spoke to Dr. Cindy Teoh. She taught me how to give the necessary medication to reduce the swelling but told me it would take some days before the swelling would go down. 

The swelling rose up from the feet upwards

9th July 2020.     Dad’s feet and scrotum swelled and the urination issues made him miserable. We decided to take dad to Selayang hospital to resolve it. At the hospital, Dr. Cindy talked to me at length about the importance of letting Dad know that his condition is terminal while he was still lucid enough to decide what he wanted to do to put his affairs in order. She said he (big boss mentality) in particular would be absolutely frustrated to find out his condition is terminal when it is too late for his body and mind to do anything. 

Earlier that week, we had tried several times to tell Dad about his terminal situation but we chickened out at the crucial point. So I told my brother Meng we have to try to tell Dad again and he had to be there to help me. So that Friday night, after dinner, we sat Dad down at his office table and finally managed to tell him the bad news that his disease was incurable. What was Dad's response?

He announced he wanted us to take family photos and he instructed me to put it up on his favorite media -Facebook. He announced he wanted to have a family dim sum breakfast on early Saturday morning. Normally I would shy away from early dim sum breakfast in view of the distance from Cyberjaya but in view of the fact that we had limited time and opportunities to take dim sum breakfasts with Dad - I quickly agreed and rallied the extended Tan family to join the breakfast. We also re-started our old family ritual of Sunday dinners that weekend.

Dad requested for a family photo moments after
he knew he had limited days to live. 

Family morning dim sum

4 generational family Sunday dinner ritual re-started. 

Why do we have to tell the patient he is terminal? Can we ignore the elephant in the room? Why not? The doctors’ medication can ease physical pain but there is no medication to ease emotional pain. Often patients who have not yet resolved emotional issues hold painfully on to life. They lived on in misery (both them and their family members) even though their bodies cannot function anymore.

When I told Dad this, he understood immediately. Dad began reaching out to reconcile with many family members. I have never seen Dad (the big boss) apologized to anyone but during this period, Dad’s heart was tender and he apologized and forgave. The emotional reconciliation and forgiveness was the most beautiful part of our painful journey. And Dad told us painful stories of his childhood – stories he had never told us for 87 years. Emotional healing came to him and us as he shared these stories.

Over the next few weeks, the swelling in dad’s feet and scrotum reduced completely, but his phlegm got thick and sticky. Hospice nurse, Bazilah, recommended using a nebulizer, kindly loaned to us by hospice. We learned how to use it effectively. Dad told us very clearly he did not want to die in the hospital alone and we were to nurse him at home as long as possible. 

My siblings rallied around dad, taking turns to feed Dad medication, monitor his temperature, blood pressure, bowel movement, sleep patterns, and reporting it in our siblings’ chat group with Chai and Kuan bearing the bigger burden as they lived with Dad.  I keyed in the data in my excel sheet. If there was a new issue that we did not know how to address, I would call both SPCU and also HMC. The tremendous competent medical support available through phone calls was a great relief to me and my family.

When the swelling on his feet was gone, dad regained balance and mobility and started exercising on the balcony. We were quite cheered by the improvement. Dad sang praises of the doctors at SPCU who used the right medication and reduced the swelling in 2.5 weeks. He was amazed as that same swelling had troubled him for more than 7 months since December 2019. 

Dad starts to exercise again after 7 months. 

23rd July 2020 Thursday:     Dad fell on the floor in the night while trying to go to the toilet by himself. He was in great pain and was simply so miserable. I asked him if I could pray for him. He said yes desperately - "Please pray for me." I laid hands on him and prayed aloud for the pain to reduce and for wisdom on what to do. I asked Dad what we should do and which hospital he wanted to go to. He asked me to decide. So I called SPCU and consulted with the doctor. I expressed my concern about his pain especially if he had to wait a long time for treatment and pain relief. I was assured I could wheel dad straight in for treatment. The doctor also taught us to administer the first dosage of a stronger painkiller at home and to bring more medication along. I also texted my church to pray. 

At SPCU, Dr. Loke was there, ready to assist dad and treat him immediately. She helped Dad relax and made him comfortable. How thankful we were that dad had no fractures or broken bones. Dad was full of praises for the doctors who had treated him so promptly. A few days later, I sent flowers, fruits, and a TQ letter to SPCU for their outstanding prompt care of dad.

Letter of appreciation to SPCU

Bouquets for SPCU doctors and staff. 

That Friday, Dad's barber came to the house and cut his hair. Rosie, my church friend visited with flowers for Mum. Dad was simply delighted to see his dear friend! Rosie did the yum seng cheer with him as in days of old but using Chinese tea. Dad's bp and heartbeat improved significantly after Rosie's visit. Chew Kor and Judith also visited Dad with home-brewed chicken essence for both Mum and Dad. Dad and Mum were greatly cheered by the visit with plenty of singing and laughter. Our weekly yummy delicious family dinners were very happy times. We learned some new songs as Dad sang his favorite song solo. Mum also sang her favorite song. Laughter is a very good medication even during this terminal journey!

Rosie's visit and yum seng cheered Dad and Mum greatly.

Dad sings his favorite song solo happily
from a song sheet with an enlarged script.

Chew plays the harmonica to accompany Dad's singing.
  

Dad gifts Chew with his beloved antique abacus. 

8th August 2020: We celebrated Dad's pre early birthday with Cheng Yee inviting our church friends -the Pang Yeows buddies to sing. The happy songs and dancing really cheered Dad up. This was the first birthday where he was not allowed downstairs but probably it was his happiest birthday. He was like a little boy captivated by the balloons, festivities, and cake with family and friends singing his favorite songs. We celebrated his birthday several more rounds - on Sunday and also on his IC date on the 11th of August 2020. 

Rosie's beautiful birthday decorations for Dad.
She burnt the midnight oil to get the deco ready.

Dad laughing like a little boy
totally captivated by his birthday celebrations. 

Dad insisted on holding the rainbow balloon deco himself
and the birthday deco should be part of the family photo.

Singing and dancing with joy to dad's favorite songs.

16th Aug Sunday night     Dad was in great pain as he could not swallow his painkiller. I called the hospice emergency careline. I was taught to administer the medication by propping dad up on his side and pumping it gently in via a syringe into his mouth. Hospice nurse Bazilah visited regularly. There were many clear signs that the disease was progressing. Towards the end, we were concerned that dad would have another pain episode when he could no longer swallow the liquid painkiller. She fitted dad with a patch to administer the painkiller and dad was also fitted out with a port so we could inject medication in the event he could no longer intake medication orally.

I am truly grateful for the support of the SPCU and HMC. On the days I didn’t call them, the doctors would try to contact me to check if dad was okay and that we were medically prepared for weekends. Dad had different issues from time to time, for example, not being able to read, hard stools, hallucinations, etc. I found out there was medication available for many issues and we can make the patient as comfortable as possible even though he is dying. The tagline “Die with Dignity” became real for me for the first time.

Whatapps text from doctors at SPCU when I didn't pick up their calls.

Two days before Dad died, on 20 August 2020 which was a public holiday Awal Muharram, Dad insisted everybody come home to our Hot Spring's house. He said he had a special announcement to make which he wanted everybody to hear. The minute we entered the house, Tee Yam, our youngest sister asked us to empty our wallets and give her every bit of cash. She said Dad wanted to make angpows with hard cash. The banks were closed since it was a public holiday.He did not want IOU or cheques. He only wanted hard cash. When we asked what the announcement was, Dad said it was not yet time. After his dinner at about 7.30 pm. Dad said he wanted us all in his bedroom. He was in a very jovial mood.He asked Chai to emcee like a Hong Kong TV talk show and ask us to sing songs and perform items. Finally after many fun filled moments and all sorts of announcements, Dad said he was ready to announce the real deal. He said he had 3 grand prizes and he actually wanted to make more prizes but since all our total solid cash only amounted to RM15,000/- so he could only made 3 prizes. First prize went to Mum, 2nd prize to Tee Yam and last prize to Meng, all with RM5000/- which he say was their prize. Since Tee Yam is the accountant, she returned all our 'borrowed " cash the next day on Dad's instructions. To me, this was Dad's way of saying sorry to family members. The day that Dad died 22^nd August 2020,was a Saturday. His breathing was extremely belabored and noisy. We called hospice emergency at 9.45 am. Nurse Steffernie taught us how to improve hisbreathing. To our amazement, Dad’s breathing improved so much that we could sing 9 of his favorite songs. At one point, Dad actually conducted our singing with his arms open wide with gusto and ordered my sister to dance. Three hours later at1.30 pm, dad slipped away peacefully with 4 of us physically holding his hands and touching his heart while other family members were at his bedside at home.  

P/S    I returned loaned equipment and sent gifts and a letter on behalf of our family to express our thanks to Hospice Malaysia, Cheras.

Flowers and gifts for Hospice nurses. 

Letter of thanks to Hospice Malaysia.

On my way back from hospice,  a car bearing the number plate DAD 26 loomed in front of my car. Somehow saying the unusual car plate brought me joy. Was that Dad speaking his approval to me from heaven?