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Synovial Sarcoma

Oscar Lim’s Story (23)


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I was diagnosed at the time of COVID-19 pandemic outbreak. I was in my second year of law studies in Ireland, and I was going to graduate this June. But now I have to take a gap year, hoping to continue my studies this September and graduate next year.

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The campus was temporarily closed due to the pandemic in March last year. I took this opportunity to come back to Malaysia. During the fourth month at home, I felt a lump on the side of my left thigh during exercise and when washing. I did not think much about it, because the lump did not hurt at all, and it had no effect on my life. Put side by side with the other thigh, the presence of the lump was not obvious. I didn't think it was a big deal, I just told my mother casually about it. My mother immediately became alarmed, and brought me to our family doctor right away. The doctor advised us to do a biopsy to make sure of things.

My biopsy report done in the first hospital was just an initial diagnosis telling me that I have sarcoma, but didn’t say the severity and the extent of its spread. With limited information, I couldn’t learn much further on the Internet even if I wanted to. A few days later, I got my CT scan report, and it seemed that I had to undergo surgery. I quickly found a suitable surgeon after that.

A family friend introduced his former colleague, Dr. Chye Ping Ching, to us. Dr.Chye is a reputable doctor, so I always had to start waiting on Saturday mornings for a chance to see her; there were times when I waited from the morning until 3 or 4 in the afternoon. She practises in a government hospital, and only visits her private clinic on Saturdays.

Dr. Chye asked me to show her my diagnosis report from the prior hospital. After seeing that I had only done 2 tests, and hearing that the previous surgeon was eager to perform surgery immediately on that basis, she immediately told me that was not right. She said that my tumour sample should have gone through many different experiments and tests to fully reveal the characteristics of the tumor, and only then she can begin to plan how to treat me. From there I went on to receive more scans and tests. I did CT scans for both my pelvis and lungs, MRI, and PET scan of the whole body to fully confirm that there were no cancer cells hidden in other parts of my body. Dr Chye explained all these to me. She also told me in detail of where and how she would perform the tumour removal, whether there would be scars, the steps of the operation, and accompanying risks.

We moved fast, and it took only two weeks to get from our first meeting with Dr Chye to my day of operation. I prepared as usual the day before, like fasting and resting. I entered the operating theatre at 5 or 6 in the afternoon, and was not sent out until midnight. Dr Chye must have been so tired after the 6-hour operation. Mum and Dad must have been so anxious, waiting in the ward for the operation to end. They were very worried, and my mum was in tears. Dr Chye was visibly exhausted, telling us that the operation was a success, and everyone was relieved.

A day after the operation, Dr. Chye asked me to wiggle my toes to see that my nerves were still working. My surgery may sound like it’s just cutting off a piece of flesh, but the procedure was actually very complicated. Because the tumor was attached to the important femoral artery, femoral vein, and femoral nerve, Dr Chye must be extremely meticulous and precise in order not to hurt any of those. If my nerve was affected by the surgery, my muscle function maybecome weaker. The doctor removed my tumour with such dexterity, saved my legs and allowed me to continue moving freely.

Radiotherapy commonly causes burnt skin. I had received 30 radiotherapy sessions, for a total span of 6 weeks. The irradiated area dried out and reddened, and the nurse gave me moisturiser to rub on it and protect my skin from being further damaged.

After that it was chemotherapy, which was done in 6 cycles, once every 3 weeks. Chemo means a weakened immune system, which can make even minor wounds and injuries dangerous. After getting home from a morning exercise, I found that a little area of my crotch was scratched, and the cut started getting inflamed. It didn't improve for a long time, and was really painful. I asked for help from the doctor finally, and was admitted to the hospital again for 3 weeks.

It was so bizarre that a simple cut could make walking a few steps difficult. The nurses cleaned my wound in a much better way than when I was taking care of myself at home. I had made many nurse friends during my hospital stays, and everyone loved me very much.

My condition is stable now, , and I will continue to be put under observation for two years. I can live like a normal person, except that I need to avoid intense exercises. Relatively mild ones, like golfing, swimming, cycling, all are fine. I used to play badminton in the past, but it is an intense sport. It takes running, lunging, and jumping. I would have to give it a pass for the time being.

I enjoy sports, eat healthily, don't smoke, and have no major bad habits in life, except that I sometimes stay up late. I rarely even eat junk food. So I guesssleep is really essential for good health, and I would like to advise fellow youngsters to go to bed early and protect themselves when they still can.

In general, I find youngsters try to avoid visiting the doctor. This is usually why young adult cancers are frequently diagnosed late. I was very lucky in that I had my mum who forced me to take notice. I would like to thank my mum for her life-saving meticulousness. If anything seems a little wrong, she sees a doctor. Sarcoma is a cancer that is often overlooked, because it usually doesn't hurt, and does not cause trouble in your daily life.

Our mother always taught us that our destiny was our own responsibility. We were exposed to relatives’ funerals, to be desensitised to the scariness of death. Dad believes that everything is destined, that most circumstances are meant to be so arranged and are beyond our grasp. No misfortune should be our fault. For me, I believe that life is very simple. We come to this world for a visit, we make friends, we learn something, and we try to be happy. Regardless of length, what matters in a life is how fully we have lived in it. We believe that it was destiny that had brought us to Dr Chye and Dr John Low. I feel total confidence in them, and I feel reassured putting my health in their hands.

I thought about returning to Ireland to continue my studies, but my cancer is aggressive and has a high chance of recurrence, so I want to remain in Malaysia to make sure that everything looks okay in the long term. I need to get a PET scan once every 3 months, so it is very inconvenient to go abroad. I’m now applying to my university to see if they would allow me to study remotely.

My life goals have changed after getting cancer. The original goal was to do well materially, earn a lot of money, get a nice career, nice car, nice house. Now what I actually want is to enjoy my life, and feel all the real happiness that lifecan offer. When I was growing up, I wanted to work all the time, in order to earn more. Money of course is still important, but I will never overlook happiness anymore. I want to go with the flow and see where life brings me. It would still be great if I could make a lot of money in the future, but it’s not an urgent matter. A good life is a matter of perspective.

The survival rates of synovial sarcoma do not look good. I feel fortunate to be alive on a daily basis. I had searched for other patients on the internet, and saw that some are able to survive for more than ten years even though they were diagnosed at the 3rd or 4th stages. It makes me feel that nothing is impossible. Data is just data, and we can't control which side of the percentage we are on, and to be frank, it has no real impact on our lives, so we don't need to worry about it.

Life is a process that will come to an end eventually. There is a saying that goes, “either we are busy living, or busy dying." Life and death are two sides of the same story. What to do with it is our own decision.

Dr Chye and Dr John Low had taught me some nutritional knowledge and advised me to eat more vegetables, and less fried and high-calorie foods. After getting cancer, I had also learned a lot about medicine and how our body works, which greatly opened my eyes.

Before I got sick, health was something that I never thought about. It was a given fact that a 23-year old must of course be able to live to be a 30-year old. I never thought that would be put into question in such a real way. Health is so fragile, and so essential. At this point what I can do is continue to be positive, and to take care of myself actively. When bad things happen, we just need to emphasise the good things more.

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