At 29 and married for just a month, she was told she had ‘Stage 3.5’ lymphoma and fought for her life
One month after her wedding, Kristen Juliet Soh discovered she had advanced lymphoma, a type of blood cancer that affects the body’s lymphatic system. She opened up to CNA Women about how she fought for her life, overcame extraordinary trials with her husband, and went on to have two children.
It began as a mild dry cough in May 2014, one month before Kristen Juliet Soh’s wedding. At first, the 29-year-old bride-to-be didn’t think much of it and carried on with wedding preparations.
However, in a matter of weeks, the cough rapidly deteriorated. “It got to the point where whenever I talked or walked, I would cough. Then, I started to feel a sharp pain in my back and thought I’d pulled a muscle from all the coughing,” she recalled.
Soh went to see two general practitioners (GP) and was prescribed cough syrup each time. Nonetheless, her cough persisted.
“I went through my wedding not knowing what was going on. While my husband mingled with guests, I was coughing my lungs out,” she said.
A month later, she coughed up blood. This unsettled her so much that she rushed to the hospital for an X-ray, which showed a big mass on her right lung.
Doctors initially suspected pneumonia and put Soh on an antibiotic drip. However, Soh began to develop a high fever and after a more detailed computerised tomography (CT) scan, doctors discovered a large tumour the size of a slice of bread on her lung.
At midnight the very same day, Soh was wheeled into the operating theatre for a biopsy to remove a sample of cell tissue for testing. At 3am, the results were out.
“The doctors asked my parents, brother and husband to step out of the room to speak to them privately first. That was when I knew something was wrong and mentally prepared myself for the worst,” she recalled.
Her doctor told her it was lymphoma, the fifth most common cancer in Singapore. In Soh’s case, she suffered from B-cell Non-Hodgkin lymphoma, a cancer caused by a mutation in the DNA of a type of white blood cell which helps the body fight infections. The cancer affects the body’s lymphatic system.
She was told it was Stage 3.5. Soh later found out from her current doctor that while cancer stages progress from Stage 1 through 4, doctors sometimes may use Stage 3.5 to let a patient know they fall in between two stages.
And because her cancer was aggressive, she needed to start on intensive chemotherapy immediately.
COMING TO TERMS WITH LYMPHOMA
“At that time, I hadn’t even heard of lymphoma before. But my impression of cancer is that it is scary,” she said.
Soh braced herself for a painful conversation with her husband. “I asked him if he wanted to annul the marriage. After all, we were only married for one month and taking care of a sick person is not what he signed up for. I didn’t even know if I would get better,” she reflected.
Without hesitation, her husband promised to stick with her.
This was not the only difficult conversation the couple had. Since chemotherapy is known to affect fertility, they discussed the option of egg freezing.
However, guided by their Catholic faith and not wanting to further delay treatment, the couple eventually decided against it. “We decided to let nature take its course and consider adoption if I really could not have a baby,” Soh said.
In fact, Soh accepted her diagnosis and treatment plan. She said: “I was surprisingly calm. I thought okay, let’s just go with that. I will just make the best of it.”
That is, until the day she was sent to the cancer ward.
“I shared my ward with three other patients. All of them no longer had their hair. One was groaning in pain all day and night. Another was really bloated from water retention – her legs were so swollen that she had difficulty walking.
“Seeing how the other patients were suffering felt like a mirror into my own future,” she said.
“All my life up until this point, I had never been hospitalised. When the nurse gave me the urine pan and cleaned me up because I had some tubes inserted and it wasn’t a good idea for me to walk to the toilet, I felt really embarrassed. I felt horrible. That was the first time I really broke down,” she confided.
HER CANCER JOURNEY
Over the next four months, Soh went through six cycles of intensive chemotherapy. She spent one week in hospital, undergoing chemotherapy round-the-clock, rested at home for two weeks, and then went back to hospital to repeat the cycle.
“The drugs were delivered through a drip, followed by a saline drip in between each round of drugs. I basically lay in bed for the whole week while nurses came to change the drip for me. Even when I went to the toilet, I’d pull the drip with me,” she said.
A peripherally inserted central catheter (PICC) line, which is essentially a long tube, was inserted into her arm leading to her heart where the chemotherapy medicine was delivered directly. This PICC line remained within Soh for four months.
“The first week after each chemotherapy cycle was the toughest. I felt so weak that even when I walked from my bedroom to the toilet, I’d be panting as though I did a 2.4km run. I lost my appetite and my mouth and throat were filled with ulcers. I ate baby food, puree and juices,” she said.
I asked him if he wanted to annul the marriage. After all, we were only married for one month and taking care of a sick person is not what he signed up for.
“Because chemotherapy works by killing off fast-growing cells in the body – the cancer cells as well as the good ones, it causes hair loss and destroys white blood cells (that help the body fight infection and other diseases).
“I had to jab myself in the stomach daily to increase my white blood cells. I also went for two transfusions over four months when my blood count was not normal,” she added.
The uncertainty was harder to bear than the physical pain. “Because chemotherapy destroys your cells, I felt worse during chemotherapy than when I was only suffering from the symptoms of cancer alone. I had no sense whether the treatment was working,” she said.
“I used to be someone who planned everything but suddenly, I felt like I couldn’t control anything happening to my body. I had no idea how I was going to come out of this. This kept me up all night,” she said.
FACING GREAT TRIALS
Soh also had to come to terms with hair loss. “I used to have really long hair and it was scary to see it flying away in clumps when the wind blew. I decided to shave it off. I guess it felt like a way to take back some control over my body,” she said.
These physical changes affected her self-image. “I thought I looked like an alien without hair and brows. I felt ugly and not very lovable, so even when my husband initiated any form of intimacy, I felt very uncomfortable,” she said, adding that her husband was very understanding.
Soh was also affected by the possibility that she may never have children. “When I watched a video of a baby girl with dimples doing cute stuff, I felt very emotional. I wondered if I would ever have a child who could possibly look like that?” she said.
Though Soh took medical leave from her full-time job as a content manager for a news app, she continued to work on her side hustle at the time, a digital beauty magazine, Daily Vanity. She wrote three to four beauty articles a week.
It might sound really uncomfortable writing about beauty products such as mascara and shampoo at a time when her own hair was falling out, but Soh said that it helped to take her mind off things, and made her feel productive and more like her old self.
I thought I looked like an alien without hair and brows. I felt ugly and not very lovable, so even when my husband initiated any form of intimacy, I felt very uncomfortable.
However, ultimately, it was the love and support from her parents, husband, brother and friends that helped her pull through. “They took turns to drive me to the hospital and worked out a schedule to make sure that as much as possible, someone would be there in the hospital with me,” she added.
COMING THROUGH AS A SURVIVOR
Soh recalled the day she was due to go through her scan results with her doctor, five months after she first coughed out blood. “I felt more nervous than I was when going to collect my O-Level results,” she laughed. “There was also a bit of excitement. I knew if it was clear, I would no longer have to go through chemotherapy.”
“I remember stepping into my doctor’s office and seeing this huge grin on her face. This was the first time I’d ever seen her smiling so widely at me; she always had this frown on her face before. As soon as I saw her face, I put down the load in my heart,” she said.
Soh got the all-clear from her doctor. Her cancer was officially in remission.
It was a harrowing journey. However, as with many life-changing experiences, Soh’s brush with mortality changed her perspective and priorities.
Soh has since left her job as content manager. She and her husband now run Daily Vanity, where she is editorial director.
Realising how much she wanted to be a mother, she began trying for a baby two years after her cancer journey. After suffering from one miscarriage, she successfully gave birth to her eldest son a year later.
Today, the 37-year-old is the proud mother of two sons, aged four and one. But even though the motherhood experience is extremely fulfilling, the fear of relapse still hangs over her.
“Recently, I started sharing with my eldest son the idea that people die,” she confided. “And when they are older, I will definitely share my cancer journey with my sons.”
Her cancer journey has also made her more appreciative of family and friends.
“I never really expected it, but friends do leave you when you have cancer, even if you are not borrowing money from them. Some of them just disappeared. Others just sent me lip-service messages to say, ‘Get well soon’. Only a handful of friends stuck by me, and did their best to make my life and my caregivers’ life easier,” she said.
“Before cancer, I was all about chiong-ing (hustling) at work, hanging out with friends and filling out my social calendar. But I now realise that given how short life is, what really matters is the people who really love you,” she reflected.
“While I used to over-plan my life, I also now realise that while I can plan what we’re going to do for the next 10 years, I may not be around in 10 years.
“This episode taught me not to stick to plans so much, and to be more spontaneous, cut myself a lot more slack, and try to live in the moment a little more,” she reflected.
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