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Wednesday, 21 September 2011

I DID NOT WALK MY NPC JOURNEY ALONE



Many years ago I remember a friend’s husband passed away of bone cancer. My wife Orris and I were not aware of his disease until his funeral. So were many of our friends. As for me, most of my friends knew about my NPC diagnosis, treatments and recovery throughout my journey.

It all started with a significant visible lump on the left side of my neck, discovered by Orris in early October 2009. My normal GP could not tell me what it was and neither could my annual health screening on 23 October 2009. Both doctors did advise me to seek medical specialists in hospitals.

I took the Biopsy Test at the Alexandra Hospital (now Khoo Teck Puat Hospital in Yishun) on 18 November 2009. On 30 November 2009, 8 days before my next appointment, the doctor called me back urgently, informed me of my NPC diagnosis and arranged for my treatments immediately. She professionally and clearly assured me that NPC is curable. Thus my journey of fight against NPC began.

I did not walk my NPC journey alone. My wife Orris would undoubtedly be my caregiver. Despite of feeling of sadness for me, she embarked on her own journey to seek as much information as possible about the disease. She surfed the internet, looked up articles and talked to hospitals, relatives and friends. Apart from my brother-in-law in Malaysia who also had NPC, no one else in my family has NPC or any other cancer before. Therefore, we relatively walked into the unknown territory.

Many friends came forward to offer advices and directions, including consultation with a TCM doctor. I consulted an oncology TCM at Singapore Chung Hwa Medical Institution at Toa Payoh prior to, during and after my NPC treatments. I am still consulting him monthly.

On Christmas Eve 2009, I received a Get Well Soon self-made personal card as my Christmas present from my in-laws’ families, giving me the encouragement to face the treatments ahead. I started my chemotherapy treatments (CT’s) on 4 January 2010 and radiotherapy treatments (RT’s) two days later at Tan Tock Seng Hospital. I completed all my treatments on 22 February 2010 and therefore my Chinese New Year festive celebration that year was burned, which was nothing compared with the troubles Orris has endured to make sure I had the best possible treatments and on the right path to fight my NPC. Until today she still wakes up very early every morning to boil the TCM for me.

At the start of my NPC treatments the nurses introduced us to TTSH’s NPC Support Group and we attended almost all their talks whereby the members shared their own NPC journeys. I also attended many talks of the NCC NPC Support Group. The support groups has played a great role helping me and fellow sufferers to understand the disease better, cope with the side effects following the treatments and move forward with our lives. Both support groups under the leaderships of Mr Peter Tang at TTSH and Mr Teo Thiam Chye at NCC have been great sources of useful information for NPC patients indeed.

During the treatments I met an ex-project team member who opened up himself as a NPC survivor and comforted me, “It’s a long and tough journey but you’d prevail.” Another friend brought her NPC survivor friend to my home and explained the process and the side effects of the NPC treatments, preparing myself for the fight ahead. One more friend and her family visited me every weekend to comfort me.

My colleagues were all very understanding and equally supportive. My directors had said clearly to me that I concentrated on my treatments and got cured before thinking of reporting to work again. I stopped works for more than 6 months for treatments and recuperation. They stopped sending business emails to me almost immediately so as not to worry me about my project and works. They also visited me at home on few occasions. I felt relieved and comfortable and proceeded with my treatments without interruption and worries.

The supports I received from all definitely fully eradicated my walking on this journey alone. It helped lifting up my spirit and kept me going. “Come on!” each of my supporters always encouraged. In fact one year later I could not quite remember all the side effects and sufferings which I had gone through because with so much supports, I was not depressed and always looked forward to recovery. In my opinion, the supports were important in helping in my NPC recovery. The two to three month journey did not seem that lengthy anymore.

Perhaps TCM has helped me tremendously in my NPC treatments. I believe so. I encountered a number of side effects like any sufferers undergoing the same NPC treatments and I thought my side effects were minimal or manageable. My mouth ulcers were barely visible though I could feel it and they lasted a couple of days only as far as I could remember. Saliva loss would be apparent after 2 weeks of treatments, doctor said, but after the third week, I still felt much saliva in my mouth. I believe TCM helped boost my body’s immune system against these side effects and provided the goodness for me.

Only until my 22nd out of 33 daily RT’s I could see some of my neck skin peeled off whereas other patients said to have this side effect after the 7th RT. I did vomit few times despite of taking anti-vomit pills prescribed by the CT doctor. The pain in my throat was quite unbearable and so much so whatever food I took was vomited out. I lost more than 10 kg. Now I have ideal weight contrary to the previous periods when the annual health screening doctor always reminded me of my overweight issue. “You look great, slimmed.” now all my friends say.

Doctor gave me morphine to ease my throat pain. Morphine seemed to glue my mouth. I found difficulty to open my mouth and when I forced open it, cracks split each side of it. More pain! Morphine also caused constipation. I could not pass motion for a full week and panicked. I required anti-constipation pill in my anus to help, like a small child. Fortunately it was not hard to do.

My worst nightmare was my frequent dreams of eating. I missed many favourite foods. During my sleep, while dreaming of foods, I swallowed my saliva and it hurt my painful throat. Dry mouth or dry throat is another side effect. It may or may go away for years. Until today I still have it but it does not feel so hurting now. At that time due to the hurt of dry throat, I woke up few times at every two or three hour intervals. Sleep was never peaceful then, leading to tiredness and psychological loss of the warfare.

There would be hair loss behind my head. Orris brainwashed our daughter not be alarmed at the sight. In fact our daughter laughed at it when it happened. We were restful that she was not scared after all.

Generally the doctor said that I was coping well and above average in terms of sufferings from the side effects. Time indeed passed swiftly, for which I was thankful for all the supports from the doctors, family and friends alike. I must look after my health from now by changing my lifestyle.

I have changed my food diets. I do not eat or eat less of what I used to take previously, i.e. meats, especially steaks and roasted meats, curries, deep dried stuffs, sweet deserts and other unhealthy foods. I take more vegetables and fruits and drink more fresh fruit juices and “kosong” (without milk and sugar) drinks. I still drink a packet of Ensure Plus milk almost everyday. No more fresh milk to accompany my daily breakfast. And definitely no more soda and alcohol drinks for me. You may say that my stable meals now are rice, mee hoons and breads. I drink my TCM every morning and evening after meals.

I used to sleep late at midnight. I have changed to one to two hours earlier after sometimes accompanying my daughter’s reading and spending quality time with her. I wake up early and go for my daily walking/jogging for half hour at about 6:00 a.m. in time for my office works to start at 8:00 a.m. The daily exercise does refresh me and I do not feel much tiredness during my works nowadays. During the exercise, I also stretch my limps, neck and mouth or jaw and do tongue exercise as recommended by the members of the NPC support group.

My NPC has also changed my outlook of life. I must treasure my life and whatever I have now – family, friends, works, possessions and most importantly time. I make sure I spend enough quality time with Orris and our daughter Mei Jia, doing things together more than before. I do not take my family and things for granted now. I do not take troubles seriously so as to stress myself out. I start to return to attending church and join in the fellowship with fellow church members. Happiness comes first above all things.

Kong Peng Sun
20th month NPC survivor



3 comments:

  1. Peng Sun touched on a few important aspects:

    1) Lump in the neck is the second most common presentation of NPC. The lump in the neck is actually an enlarged lymph node.

    2) TCM plays an important role in majority Chinese populated Singapore. While the Western doctor ie the medical oncologist will advise against combining TCM together with chemotherapy and radiotherapy due to the unknown interactions and potentially increased side effects, many patients will continue to take TCM during chemo and radiotherapy treatments. In a way, the term TCM is too board to put them in a single category. TCM comprises various combinations of herbs, roots and sometimes insects and no 2 TCM physicians will give the same combinations. Some patients will report improved tolerance with reduction of side effects while others will report worse side effects. The true effects of TCM are still unknown mainly depending on the cocktail of medications used and the individual tolerance to all the combined treatments.

    3) ALL NPC survivors lose weight. I have in fact never seen a NPC survivor gain weight within 1 year of treatment and it is common to lose 5-10% of the baseline weight. Weight loss of 5 kg to 20kg is common.

    4) NPC survivors live a better lifestyle on completion of treatment. They choose their food carefully, cutting out on unhealthy food and eat more vegetables and fruits and many have even gone Organic. They also do a bit more exercise.

    5) After diagnosis of a cancer, many will look at their priorities differently. Family, friends, time and health all become more important compared to the 5 C (Car, Condominium, Cash, Credit Card and Club). All material gains and wealth will disappear quickly once the life is threatened. Only your family and friends will support you through this difficult time. Time become more precious. Less time is wasted watching meaningless TV shows, movies and surfing the internet without any purposes (not that this is absolutely useless, but less time is spend on this) and more "together" time in eating, sharing, talking and listening are done with loved ones.

    6) Religious belief become significant as a person diagnosed with cancer faced with his own mortality. Questions like why are we here on earth for and what happen after death are difficult questions. Singaporeans are religious regardless of what they believe in. Searching for and asking for divine help become important processes of overcoming cancer when one realize that depending on oneself become less of a possibility. Even the strongest man will break down in a certain degree with cancer.

    Dr. Choo Bok Ai, Medical adviser NPC

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  2. Hi

    may i check with you the name of TCM practitioner that helps in these, cos I got a love one suffering similar situation and will want to use TCM to reduce the degree of side effects from the treatment.

    Hope for an early reply.

    Thanks in advance
    mr tee

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    Replies
    1. Hi Mr Tee,

      The NPC support group had previously invited speakers from Chung Hwa Medical at Tao Payoh, Eu Yan Sang and Sagemo TCM to talk about the benefits of TCM for NPC. In Peng Sun's case, he consulted Chung Hwa Medical TCM Physician Prof Teo Eng Kiat.

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