Rule 1: Have the time of your life

Rule 2: Don’t forget Rule #1

This was the heading of the card I received after Mummy had passed away. Mummy had prepared letters for each of her children and their spouses in the month before she left us. It was a culmination of a life well lived all around her which had inspired her.

It was a time of knowing and yet not of knowing. We were facing a situation in which we knew the end and yet did not know the journey. There were more questions than there were answers. And those questions would only be answered slowly and painfully, in bits and pieces as we walked togetaher through Mummy’s last days.

Mummy survived breast cancer for 7 years. It was the urinary bladder cancer diagnosed in April 2011 that would be a constant battle. Mummy went through surgery and chemotherapy a few times. The after-effects were difficult to bear to say the least.

Yet, she lived as normally as possible with the love and support of her family and friends. She travelled often and had a wide circle of friends. Her greatest joy were her grandchildren. She would take every opportunity to fly to Sarawak to visit them laden with gifts.

In January 2018, when a nagging backache grew worse despite medication, we were worried. Ultrasound of her abdomen showed extensive lymph node metastasis in her abdomen, right kidney and left hip joint.

During this trying session, I was very quiet and tried to keep a calm demeanor as I viewed the extent of the metastasis. Mummy looked at me intently and I could not meet her gaze. We drove home quietly and as Mummy went to her room to change, I sat down and stared at the words of the radiology report. Tears could not help pouring out even as I fought hard to keep my composure. I immediately informed my brother and husband and my mother’s oncologist. When Mummy came out of her room, she knew from my bent head looking at the document in my hands that the news was not good. She came towards me and hugged me and comforted me. She said “We have to go some day”.

I told Mummy her surgical options – all of which she firmly rejected. She was prepared to leave this world, she said. I believed her and told her that as her immediate family, we would support whatever decision she made for her life and would be with her till the end.

We prepared ourselves to inform her family as we discussed how we should go about this process – preparing ourselves for the grief the end would bring.

After that, we contacted AsPaC and we had a first visit at the end of January by Sister Kris, Nurse Satwin and Dr Lalitha. That first session was very good for us because we knew we would have the support and felt that they genuinely cared for our wellbeing. We went through “end of life care” which was very difficult yet needed to be brought out to the open. Mummy was not keen on an intervention except for a morphine infusion whenever she was ready to request for it.

Every 3 weeks we noted a downward trend in her ability to be independent. From a walking stick, she needed a walker. From bathing on her own, she now needed assistance. She could not change herself and her appetite decreased. She needed to be fed. Her need for more pain medication increased.

Mummy was a fiercely independent person so all these changes proved very difficult for her, but she soldiered on.

The most difficult times were the nights when Mummy would go through unbearable waves of spasmodic pain. She was more concerned for my rest than for her own suffering that she would make her way to her armchair while I slept and would sit in the darkness with the television on softly so as not to wake me.

One day, at 2am I was woken up and noticed Hamlet was showing on the TV. I sat up with her. She had so many questions. It was difficult for me to accept that she was now forgetful and confused. She had known Hamlet almost by heart – having studied it for her school leaving certificate. She loved Shakespeare and had introduced me to his writings when I was young. And there we were, in the dark with me trying to explain Hamlet while waiting for the pain medication to take its desired effect.

We would laugh and joke with Nurse Satwin and Sister Kris that we knew all the world’s breaking news while the rest of Malaysia slept. Our roles had reversed. When I was a baby, Mummy would stay awake with me through many childhood illnesses. Now Mummy was my baby.

In early March, we started on opioid patch and aqueous morphine with a cocktail of stronger painkillers. Mummy was in almost constant pain. She was very strong and had a high pain threshold. When her grandchildren came to visit she would bear with the pain so that she could spend every minute with them. It was only when they left did she reveal how much pain she was in. She did not want to be sleeping while she could still interact with her grandchildren. Time was precious.

Three weeks later, Mummy was bed bound. I could not sleep that night. She had almost fallen twice because her left leg could no longer support her even with her using a walker. I knew that this was the beginning of the last days for Mummy. I spoke to her in the morning that it was best for her to be bed bound. I explained my fear of her fracturing her leg – a scenario that I could not bring myself to contemplate. But I would leave the decision to her.

Friends and family were a source of strength for us, too. Everyone did all they could for us. From running errands, going to the pharmacy, sending food to us and singing songs. From the early days of tears and grief, our home was now a place of contentment and life. Grandchildren played around her bed which was now in the living room. We knew we were much loved.

Soon after Mummy became bed bound, I hired a nurse called April. She was very good with Mummy and they would while their time away with gossip and watching Korean drama. This freed me to run errands and more importantly, to rest.

Mummy was resolute in her decision to not seek further treatment or have a feeding tube or an intravenous line. She agreed to a urinary catheter to make our lives easier. She always put others before herself. She made detailed funeral arrangements on her own directly with the Nirvana funeral director. This was a new experience for him and a testimony of faith that Mummy possessed. She testified that death was not to be feared but to be accepted when it was time. I knew then that Mummy would fade away peacefully and I was comforted.

We went through a roller coaster of emotions as the days passed with a daily deterioration of her condition. We cried together many mornings as I lay my head on her chest and she would kiss me gently murmuring “my darling daughter”. In private, I broke down frequently. I could hardly utter a sentence without crying during a hospice visit. I am grateful for the relationship we had built with the team that allowed me to express myself freely. April had grown very fond of Mummy and admired her strength and courage. We cried together many times as we were faced with the challenges of pain control. We would cry in despair as we felt we were chasing the wind and grasping at straws.

After another family discussion, we requested the hospice to start morphine infusion. We explained to Mummy and she nodded her agreement. She was more comfortable after that and slept through the nights. We slowly increased the dose of morphine as her need for comfort grew. She had stopped eating. She took sips of fluids to wet her lips and tongue. We continued to massage her with her favourite massage oil and never forgot to spray her with White Linen perfume. Her last smile was when my husband, Karam, suggested we paint her toenails red and she nodded in happiness and her eyes shone bright.

Mummy passed away peacefully on 22 April 2018 surrounded by her grandchildren kissing her and holding her, her children and their spouses, her eldest sister, Violet, and nurse, April.

The last words she heard were “we love you” …..