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



Saturday 17 September 2011

My experience with radiotherapy for NPC - using TomoTherapy

"Hi, my name is Sylvia, I was diagnosed with NPC stage 1 in Mar 2010; and went through 35 radiotherapy treatments. I'd say I was lucky in that Tomo Therapy was recommended to me by my Radio Oncologist.  This treatment targets at the tumour with lesser dosage on the surrounding organs resulting to me having minimal side effects.

After seven weeks of Radio therapy, I was left with only darker shades of skin on my neck, but with my deligent application of Aloe Vera gel and Vit E cream, my skin recovered in 6 months.  I had only 1 day of ulcer infection and recovered the next day.  I experienced lost of taste buds (recovered), mild dry throat/mouth, and needless to say the nose is the most affected in that I had to douch my nose to clear crusts twice a day.  I would say that I was lucky to have started TCM prescription in preparation of the radio therapy way before my treatments started.  I continued to receive TCM advice and herbal prescriptions till today.

You wouldn't believe, my tongue was 'purplish blue" in colour after the radio therapy.  According to the TCM physicians whom I've consulted, both said they have never seen such an "ugly" tongue - this denotes that my metabolism rate was low resulting to the toxin from the radio therapy not being expelled in time and accumulated in my system.  I'm glad to say that today, my tongue is as pink as the roses in my garden !!

During my treatment days, besides vegetable juicing, I would double boil soups alternate days.  Let me share some of the soups I believe helped in my speedy recovery which I hope you will find useful:

Boil for 3 hrs
Chinese pear ('xue li")
('nan pei xin")
white fungus
"Yu Ju"
Honey date (optional)
Water

I drink this 3 times a week and gradually reduce to twice a week; and now I drink only if I find it necessary..

Other soups which I frequently boil are:

Water cress with pork ribs, almonds ('Nan Bei Xin"); and honey dates.
Fresh "huai San" with pork ribs, and cordecep flowers ("dong chong cao hua")
"Qing Shan Xue Lian" with pork ribs
"Fen ke" with pork ribs

I'm now into meditation for better health !!




Sylvia

18 months NPC cancer survivor

Friday 16 September 2011

NPC Public forum 25 September 2011 at Tan Tock Seng Hospital

I have just finished my slides to talk on "Coping with cancer - what helps and what doesn't". It is a difficult topic. There is no standard textbook answer. I am still learning everyday how my patients tell me how they cope. I begin to imagine too how I would react if I have cancer. Cancer is becoming more common as people now lived longer due to better lifestyle and healthcare. The life expectancy now is 78 years old. A century ago, it was less than 50 years. People are living longer and hence there is a higher risk of developing cancer. It is like an old car; sooner or late, there will be problems. The incidence of cancer is 1 in 4 and 1 in 3 people dies of cancer. Cancer is like an "epidemic". Everyone knows someone who has cancer.

I had first hand experience on coping with my own nephew's death due to a brain tumor this year. He was 11 years old. It was the most difficult and darkest time of my life. Being a oncologist and a specialist in cancer, there was little I can do to help. The cancer was very aggressive and resistant to chemotherapy and radiotherapy. Surgery was not possible due to the location of the tumor. Yet, he was the most remarkable and courageous patient that I had ever knew. He never complains of his symptoms, although being well chair bound and seeing double vision. When he eats, it will take him an hour to swallow and food and water droop on the left side of his lips. The brain tumor had affected his cranial nerves and he was like a stroke patient. He was dependent on the wheelchair and was unsteady on his feet. Yet, he never complains and fought to live a normal life. He consoled his parents, asked them not to worry and he worried about the costs of his own medical expenses as the family was not well off. He taught me lots. He taught me that whatever situation that I am in now, there could be far worse. So,  give thanks for what you have, fight on to live a normal live, spend time with your family and never let cancer defeat you to the extend that you stop living when you are still alive. Fight cancer till the end and never ever give up.

Come to the NPC public forum. My session will be an interactive session with cancer survivors and caregivers to share their own experiences in dealing with cancer. It will be a heart warming experience.

Dr. Choo Bok Ai
Consultant Clinical Oncologist and
Assistant Professor
NUHS