For the first time since her son, Tunku Laksamana Johor Tunku Abdul Jalil Sultan Ibrahim, was diagnosed with liver cancer, Permaisuri Johor Raja Zarith Sofiah Almarhum Sultan Idris Shah talks to Zaharah Othman in a heartfelt interview about the heavy journey of battling the big C.
“NIGHTMARE is not a strong enough word to describe what I went through,” said the lady sipping her tea beside me. She was poised and calm, despite the ordeal that turned her life upside down just a week after her 55th birthday last year.
Her voice was measured, her words carefully chosen but that was something one would expect of the Permaisuri Johor, Raja Zarith Sofiah Almarhum Sultan Idris Shah, the consort of Sultan of Johor, Sultan Ibrahim Sultan Iskandar.
The mother of six is, among others, patron of the Johor Cerebral Palsy Association, Royal Adviser to the Malaysian Red Crescent Society and Royal Patron of Hospis Malaysia and a familiar figure at the Paediatric Palliative Care Unit in the Sultan Ismail Hospital and the Paediatric Ward at Sultanah Aminah Hospital.
Hers is the voice of warmth that many mothers of children with serious illnesses take comfort in. She is the living embodiment of courage and hope when all else is bleak. Her empathy is the magnet that draws people to her.
Raja Zarith Sofiah started as a volunteer with a hospital programme in Johor in the late 1990s, making monthly visits to see patients at the hospice, visiting old women with cancer in their homes and, more recently, learning more about children with cancer.
“From all these experiences, I thought I knew a bit about cancer, but it still didn’t prepare me for the news that my son had it,” she said, exactly a year after her fourth son, Tunku Laksamana Johor Tunku Abdul Jalil, 26, was diagnosed with stage four liver cancer.
“I just thought about how those other mothers coped. My son is an adult but their children are little ones… to see the drips, the chemo ports,” she said as her voice trailed off, remembering her many visits to the children’s wards where they were in various stages of treatment.
MORE THAN MUSCLE PAIN
In fact, there was nothing that hinted of anything sinister as, apart from the persistent pain in the right shoulder, Tunku Jalil had always enjoyed a clean bill of health.
“We thought he pulled a muscle and even blamed it on the way he sat on the sofa,” said Raja Zarith Sofiah.
The pain in the shoulder became unbearable during the prince’s visit to London with his two other brothers and his father, the Sultan, last August.
He was taken to the National Health Service Hospital in London and later to Cromwell Hospital where an X-ray showed something more that warranted an investigation.
A decision was then made to return to Singapore on the advice of Datuk Dr Tan Kai Chah, the liver surgeon who pioneered living related liver transplant in the UK some years ago.
Still nursing hopes that there would be a simple explanation for the shoulder pain, Raja Zarith Sofiah packed her clothes in anticipation of her son’s arrival at Changi airport. The royal party immediately headed for Gleneagles Hospital where Tunku Jalil was seen to by Dr Tan.
“Even until that time, I was still very sure that the pain in the shoulder was nothing more than a pulled muscle or a tendon or perhaps an abscess,” recalled Raja Zarith Sofiah, repeating the word “abscess” a few times, as if willing it to be true and not the dreaded C.
“During the operation, they put a hole on his side, to drain out the fluid from the abscess. But nothing came out, so they said they would have to open him up, just to have a look, to see what was wrong with the liver.
“When they came out and said he had a tumour, the entire family just broke down and cried. I remember having to console everyone including my husband and Boo, my youngest. We all cried. But after that, for me, the tears just wouldn’t come. It was as if it was blocked. I was frozen.”
She recalled the numbness that started to set in and the emotional rollercoaster that seemed to be on a permanent low.
The woman who dished out words of comfort to mothers in the cancer wards was herself in need of words to make the anxiety and worry about the health of her son disappear. Or, at the very least, lessen the pain of the after-effects of the chemotherapy that Tunku Jalil was suffering from.
START OF A ROUTINE
The diagnosis was the start of a routine for Raja Zarith Sofiah.
“We got into the routine. He was always in pain, during chemo and after chemo every Monday. On Tuesday, he would be OK but on Wednesday and Thursday, he would be completely knocked out. He would be in a lot of pain and, by the time he was about to be okay, it was Monday again and time for another round of chemo. I was with him for his chemo sessions,” she said.
She recalled people telling her “you have to be strong, you have to be strong”.
“I said, yes, yes, yes. ButI wasn’t eating. I didn’t realise I was losing weight until my clothes became baggy,” recalled Raja Zarith Sofiah of the effect of her anxiety over her son’s health.
“There was a stream of visitors to the hospitals, first in Singapore and then, when he was transferred to the hospital in Johor Baru. I felt as if I was in a fog. I tried to smile and face the public. It was hard. It was still a big shock,” she said.
For Raja Zarith Sofiah, it wasn’t just Tunku Jalil’s illness that occupied her mind at that time. She had a lot on her plate, so to speak.
The impending coronation which was to make her the Permaisuri Johor, weighed heavily on her mind. There was the move to the new palace and, of course, the wedding of her eldest son, the Tunku Mahkota Johor.
Raja Zarith Sofiah was in an unenviable position where she had to go through the pain and yet carry on her public duties as usual, as was expected of the consort of the Sultan.
In between all these big events, it was decided that a total liver transplant be carried at the First Affiliated Hospital of Sun-Yat-Sen University in Guangdong, China. They went to China in November, just after the Sultan’s birthday. The transplant took place in December.
A MOTHER’S LOVE
“The time in China was quite hard because we were in a completely different environment, completely different from Singapore and Malaysia, where we had visits from friends and relatives,” said Raja Zarith Sofiah, reliving the year’s development that had seen her shed 10 kg off her already petite frame.
“For me, to know that he had gone through this massive operation and to see him in pain was very hard. I knew I couldn’t take away his pain, and I knew he must be feeling afraid.
“There were times when I would wake up feeling very sad and this went on until the coronation was over. “
Jalil himself told me to tawakkal but he felt guilty about making us worry.”
She was able to heave a big sigh of relief only after the coronation in March this year.
THE TEARS, FINALLY
“It was only then that I was able to cry. When the tears came, it was such a relief to let it go. Before that, even my children noticed that I was in a daze most of the time. I had no interest in anything. There was a sort of heaviness to do anything. Dressing up to go to functions was difficult,” said Raja Zarith Sofiah of the ordeal.
However, she was blessed with having a very close knit family and a network of close friends. More importantly, she found solace in her daily prayers and zikir.
Nevertheless, it was fated that the test and challenges for Raja Zarith Sofiah did not stop after the transplant in December.
A routine monthly scan found nodules, small masses of tissue in Tunku Jalil’s lungs and these were cancerous. The cancer had spread from the liver to the lungs. A round of chemotherapy was again necessary.
The chemotherapy, which had taken a toll on not only Tunku Jalil, but also the family, was finally stopped last July. The nodules had not shrunk. This month, another scan is on the cards to see if the cancer has spread or has actually disappeared.
“The complication in Lil’s situation is that he is someone with a liver transplant, not just someone with cancer. So whatever drugs they give, they would have to consider the liver,” said Raja Zarith Sofiah.
“We are lucky in the sense that we can afford to give him the best treatment, but it doesn’t take away the fact that my son has cancer. However much money you have, health is still important.”
She was also quick to admit that she found it even harder to see children with cancer after Tunku Jalil’s diagnosis.
“I guess it was easier to offer solace to other mothers until you become that mother yourself. I just don’t know why,” she said by way of an apology, adding that from what her son had described to her of the after-effect of chemotherapy, she just couldn’t imagine how young children would cope.
Tunku Jalil himself is coping by visiting children and adults with cancer. The Sultan of Johor had also set up a foundation in his name called the Tunku Laksamana Johor Cancer Foundation.
Raja Zarith recalled visiting the late Zakwan Anuar, who made news when he was photographed with the visiting Duchess of Cambridge. The 15-year-old boy had acute leukaemia.
“When I heard that Zakwan was not well, we flew to Kuala Lumpur. Jalil was with me. Zakwan was already in a bad shape but he had told his mother that I would never come. His mother then told him that he was wrong as I was there with Jalil to visit him,” she said.
The family ordeal brought them even closer together with the siblings taking turns to visit Tunku Jalil whenever he was in hospital.
“One night when he was in pain, he asked one of the staff to call me. So I went in the middle of the night. My eldest son and all the children were there as well and he was just in bed in so much pain from the chemo,” said Raja Zarith Sofiah who added that she is a changed person.
“Too much had happened within this one year, from the diagnosis last August till now, moving house, arranging for our son’s wedding, the coronation and all the time anxious about Jalil. I realise now that money isn’t everything. Having good health is very important,” she said philosophically, as she waits again for the result of another scan due this month, praying for an end to the nightmare.