Bring 'em on!

Just completed the first work assignment since February. Ahhhh...more consultancy work please...as G.W. Bush would say; "...bring them on!" :)

Alone in the big, big world

I have prided myself for being independent most of my adult life since moving out from my parents' home in 1988. It is until my current condition that I realise the value of a community, and of family support. I would like to share an article from the New York Times about single people who fall ill, and have to depend on others for their needs.

Many of us in Malaysia may be able to rely on family members and close relatives for support, but with the increasing smaller families, can we continue to enjoy such luxury? The current "sandwich" generation; where a couple has to take care of aging parents and also their own children, any small problem would push them to the breaking point.

It is such realisation, coupled with the experience of my grandma and father, that I joined the Malaysia Healthy Ageing Society (http://www.healthyageing.org) and took up qiqong. I was working on ageing gracefully and put off the need to rely on others. Hmmm...looks like you can only plan so much!

Anyway, onwards to the article.

Alone in Illness, Seeking Steady Arm to Lean On
By Jane Gross
www.nytimes.com

Every time Grace McCabe is handed a form in a doctor's office asking for an emergency contact, the blank space makes her shiver.

It is such a simple question for anyone with a spouse, partner or children. But Ms. McCabe, 75, has always lived alone. Who would stand by her in a crisis? Who would be there for her in the worst of times?

These were once hypothetical questions. But now Ms. McCabe's slowly fading eyesight is almost gone. She has always had lots of friends but had never asked one to take responsibility for her, to answer the middle-of-the-night telephone call from the emergency room, say, or to pay her bills because she cannot write checks herself.

Of all her friends, she has fixed on one with a good heart, a steady hand under pressure and a talent for problem solving. So time and again, she writes "Charlotte Frank" in the blank space and lightens the moment by calling to say, "Charlotte, you're on another list."

When Ms. McCabe was knocked to the crosswalk by a reckless driver and suffered a concussion, Ms. Frank, 70 and herself single, stayed overnight on the living room couch. When Ms. McCabe could no longer see standard type, Ms. Frank got her a computer and set the font to its largest size so she could read the newspaper and order from catalogs.

"You find out there are good friends who become great friends," Ms. McCabe said. "Charlotte told me to 'grab on,' both literally and figuratively, and I did."
There is no way to calculate how many Americans of all ages living alone happen to be sick or disabled, but hospital discharge planners and home health care agencies say they are serving more single people without an obvious person to look after them.

The growing number of single-person households - including the never-married, divorced and widowed - is evident in census reports. In 2003, nearly 27 percent of American households consisted of one person living alone, up from 18 percent in 1970, putting a premium on friendship, a relationship without the legal status or social standing of kin. And demographers warn that the graying of the baby boom generation will swell the ranks of single-person households, with illness and disability an inevitable corollary of old age.

People living alone are among the most difficult cases, said James Bentley, a senior vice president at the American Hospital Association. Anyone who is sick or disabled, Mr. Bentley said, "needs someone to quarterback their care," both in the hospital and afterward, but people who live alone can end up being their own quarterbacks at a particularly vulnerable time.

"The patient can't be at both places at once mentally," he said, "but we don't yet have a good mechanism to address that."

Making the situation worse is the increase in short stays in hospitals, which sometimes send people home before they can manage alone. Mr. Bentley said that hospitals must develop new ways of preparing such patients for what lies ahead and that people who live alone must "think, before they are ill," what organized networks they have to call upon.

"If we wait until the baby boomers need this, there'll be so many of them it will be impossible to manage ad hoc," he said. "It's something we need to think about now, or it's going to be an absolute mess."

Some single people need help with a temporary medical crisis, like a knee replacement that makes it impossible to bathe without help or climb stairs. Or the problem can be permanent but not life-threatening, like Ms. McCabe's fading sight, a result of rod-cone dystrophy. Her peripheral vision is gone, and what she can see seems draped in muslin, so her friends accompany her on errands and help with paperwork.

Then there are the grave illnesses, like cancer or Parkinson's disease. When a patient has no family member in charge, who sits sleepless in the surgical waiting room? Who argues with the insurance company, knows the dosage of each medicine, or calls far-flung loved ones with good news or bad?

To be sure, a spouse or grown children are no insurance policy against suffering or mortality. But people who live alone without the obvious next-of-kin for those emergency contact forms must rely on patchwork support from professionals and friends. And accepting help, let alone asking for it, may not come naturally after years of self-sufficiency.

"Maybe they haven't asked for a lot of help until now," said Christine Nolin, a social worker at CancerCare, which provides an array of free services for cancer patients. "Good for them. But this is a different time in their life. It's our job to help people get comfortable with asking."

A large circle of friends, in and of itself, may not be an answer. Take Roberta Van Laven, 71, a widow of 15 years whose daughter lives in Australia. Ms. Van Laven has friends from her former job as a technical writer for the City of New York, friends from her book group, friends who share her love of opera.

Now this proud woman has advanced ovarian cancer. Over the course of several years, recurrences and rounds of treatment, friends have offered to accompany her to chemotherapy, but she will not permit anyone to sit with her for six hours, though the distraction might be welcome. "I tell them I'm saving them for an emergency," she said. "But it's really that it's just so hard to accept help."

A New Kind of Need
The wish for unconditional care from a family member must surely be primal, so hard is it to give up.

Barbara R., a 68-year-old former college professor, would have loved to have her older sister by her side last winter when she was given a diagnosis of breast cancer, had a lumpectomy, waited for the pathology report and went through radiation treatment.

"There is a kind of unconditionality and consistency when a family member cares for you," Barbara said.

But she knew her sister already had her hands full, with an elderly partner who had serious emphysema. "He needed her more than I did," Barbara said, acknowledging the hard truth single people face when relatives and friends have other, more pressing, responsibilities. (Barbara asked not to be identified fully because some relatives and colleagues are unaware of her illness.)

Barbara knew she was entering the parallel universe of illness with many advantages. She had always been single, socialized regularly and belonged to an array of women's organizations. "Friendship has been the organizing principle of my life," she said.

But as she faced a new level of neediness that could overwhelm even the most loving friends, her goal was to make sure "that no one person had to shoulder too much." The best way to do that, she figured, was to match her friends to the tasks they would be best at and that would fit their individual schedules.

Barbara chose friends who had had cancer to join her at doctors' appointments when she was assessing treatment options. She chose those who shared her love of art and theater to keep her distracted with outings to see Christo's "Gates," the art installation in Central Park, or the play "Thom Pain (Based on Nothing)" while awaiting the pathology report. The many excellent cooks among her friends stocked the freezer with homemade soup or brought dinner to a houseful of visitors after her lumpectomy, turning a dreaded day into something almost festive.

One night when Barbara felt especially shaky, she called a neighbor cherished for her calm demeanor and invited herself to dinner. They pooled the contents of their refrigerators and shared a bottle of Hogue fumé blanc. The day of her operation, she chose a college classmate who entertained her beforehand with chatter about a recent trip to Tasmania and joined her in the recovery room afterward to hear the surgeon declare that her lymph nodes were fine.

Barbara's hardest choice was whom to ask to sleep over after the operation, which meant an uncomfortable night on her living room couch. One friend who offered had pulmonary problems and was exhausted from caring for a 97-year-old mother. Another, with a bad knee, had just returned from a sister's out-of-town cancer operation. This was not the time, Barbara knew, to be worrying about anyone else as she surely would if she chose one of those friends.

Instead she called an acquaintance, a retired physician, who is part of a neighborhood group Barbara recently joined. All its members are women. All live nearby. Their purpose is to be available to one another in times of need, like when someone requires a companion for the trip home after a colonoscopy.

Barbara sees such nascent groups, and her own web of relationships that she calls a "mandala of friendship," as models for the growing cohort of people facing illness and old age alone. "Our whole society is organized around nuclear family," she said. "Legally, culturally, friendship doesn't have much standing. How do we get beyond that? How do we create the kind of communities for ourselves that make caretaking easier?"

Help in a Crisis
Elvia Moran, 37, has been on her own since emigrating from Ecuador as a teenager. So she came to a premature health crisis with courage and good cheer that few others could muster.

Watch her shuffle on a walker from the living room to the bedroom of her Yonkers apartment and gaze into the mirror, as if she did not even notice her body wasting under the assault of amyotrophic lateral sclerosis, or Lou Gehrig's disease. Instead, her dimples flash as she admires her freshly washed hair, blown dry and styled by her best friend, Cristina Martinez.

The pair giggle and gossip in Spanish, like two young girls playing beauty parlor. Ms. Martinez says her friend needs a better styling brush to tame the frizzies. But Ms. Moran is more than satisfied.

"Oh, Cristina, I look beautiful!" she said. "Thank you! Thank you!"

Ms. Moran says she would be lost without Ms. Martinez, whom she met nearly 20 years ago when they both lived in the same building. On daily visits, Ms. Martinez prepares Ms. Moran's favorite chicken soup, spiced with onion, garlic and lime. She folds laundry and rearranges the furniture to clear a safe path. She lends Ms. Moran money until her disability payments begin.

It is money Ms. Martinez cannot spare since she stopped looking for work when Ms. Moran received her diagnosis last winter. And it is time away from her own family in Harlem, where her husband, a restaurant worker, is left to tend to their 3-year-old daughter.

But for these two women there are none of the boundaries that usually distinguish friends from kin. "She is for me like a sister," Ms. Moran said. "There is nobody else in the world with a heart like that."

Ms. Moran's dark prognosis came shortly after her triumphant graduation from Westchester Community College, which was to have been her ticket out of a job at a cosmetics factory. Within months she could not walk unassisted. Her hands were weak and her speech slurred. Doctors at NewYork-Presbyterian/Columbia hospital told her that before long she would need a respirator to breathe and a feeding tube for nourishment. She said she wanted neither and gave Ms. Martinez her health care proxy. Her friend cried as she signed the forms.

Ms. Moran is in the United States without relatives while her mother in Ecuador pleads for a visa to come help. Ms. Martinez tried to move her friend closer to her own apartment but was unable to find a place on the ground floor or with an elevator for less than $800 a month.

"I don't want her to feel lonely and be depressed," Ms. Martinez said. "She should be with people she knows, all the time."

For a while Ms. Moran managed at home with weekly visits by a nurse, a social worker, a physical therapist and an occupational therapist. An aide came four hours a day, five days a week. When all the helpers were gone, things got scary and Ms. Martinez wished she could stay overnight, an impossibility with a toddler at home and a husband already irritated by her long absences.

Once, Ms. Moran scalded her wrist when a pot of boiling water slipped from her hand. She called nobody, instead lecturing herself aloud to "Be strong!" and applying toothpaste to the burn, as is customary in her native country. Another time her body convulsed and she was rushed to the hospital, alone. Ms. Martinez found her there the next day, in a soiled hospital gown, and marched to the nurses' station to demand attention. But bravery and devotion are no match for this relentless disease. As spring turned to summer, Ms. Moran had no choice but to move to a nursing home in Westchester County.

Ms. Martinez, unfamiliar with commuter rail lines and struggling with English, tried to get from Harlem to the nursing home in Valhalla. Once, on a mystifying series of buses, the trip took three hours. Another time, using a car service, she spent $80. Her husband's annoyance turned to anger. But Ms. Martinez was undeterred.

"Elvia, she don't have anybody," Ms. Martinez said. "So whatever he says I keep running and running."

Even now, barely able to speak, and confined to a wheelchair, Ms. Moran returns her friend's kindness the only way she knows how. "Cristina doesn't like it when I cry," she said. "So I try for her always to smile."

Fear of Being a Burden
Frank Daykin spent 17 days in the intensive care unit at St. Vincent's Manhattan Hospital last October, on a ventilator after a life-threatening reaction to chemotherapy for a rare form of lymphoma. Had he been alone, Mr. Daykin wondered, what health care decisions would have been made on his behalf and who would have made them?

But his friend Carol Kaimowitz watched over him. She was the one, at the doctor's request, who called his father in Nevada to say the end was near. She was the one who gave the approval for mysterious medical procedures and then worried they might kill him. Later she would admit to Mr. Daykin that "it was the darkest, most frightening time."

Mr. Daykin, 47, and Ms. Kaimowitz, 59, met through their chamber music; he is a pianist and she a soprano. Both describe their collaboration as the most intimate relationship in their lives. But until Mr. Daykin's illness they spent little time together away from rehearsal or recital halls.

Then Mr. Daykin woke in the night in his Queens apartment to blinding stomach pain. Like many people who live alone, he convinced himself it was something minor, like food poisoning, that could wait until the next morning. Only then did he board the subway for the hospital.

There, without forethought or pause, he asked that Ms. Kaimowitz be called at her Midtown home. "I just thought of the most responsible person I could imagine," Mr. Daykin said, "and that was Carol."

A tumor had perforated Mr. Daykin's colon, the first indication of lymphoma. From Day 1, Ms. Kaimowitz stayed by his side, "a quiet, persistent, unconditionally supportive presence," Mr. Daykin said. She went along to all his doctors' appointments because Mr. Daykin said, "I didn't completely trust my own ability to hear what I was being told."

In the hospital, she played Scrabble or read him German poetry or music reviews. She assured him, more than once, that this was where she wanted to be. He needed that to be true and stopped asking why.

Through a year of emergency operations, aggressive treatment and frequent hospitalizations, Ms. Kaimowitz never flinched. "I don't know what thoughts were going through her head," Mr. Daykin said. "But to me she seemed unflappable."

That was her intention. "I sometimes felt helpless, overwhelmed, even useless," she said. "But I tried not to let him know. I just kept going, controlled my emotions when I was with him and then went home and cried."

Several other friends helped out. One kept an appointment with the superintendent when the bathroom ceiling caved in. Another took Mr. Daykin to treatments and helped with paperwork. A third, a nurse who visited after his own 12-hour shift at another hospital, spoke knowingly with the medical team. All of them lifted Ms. Kaimowitz's spirits when she found herself flagging.

Like many independent people, Mr. Daykin's greatest fear was "to become a burden to anyone; to incur obligation."

So at home, between hospitalizations, he insisted on enough privacy "to renourish myself, as it were, in the way I'm accustomed." Ms. Kaimowitz baked chocolate chip brownies to fatten him up. But she visited only weekly, as he wanted.

In the hospital, by contrast, Mr. Daykin bowed to dependence. He said he "understood in some deeper part of myself, that is wiser than the 'everyday' part of myself, that I was in big trouble. So I tried to accept whatever came my way with a measure of grace."

Mr. Daykin has resumed performing, his health is stable and he is hoping for the best. The two friends are planning a European vacation. Ms. Kaimowitz said they were closer than ever. "We talk easily and often about everything, she said. "We e-mail one another our bad dreams. I have other close friends. But there is no one in my life like Frank, who I could hope would care for me during a serious illness."

Terima Kasih

Been sometime since I express gratitude to people and circumstances that have and are supporting me.

Soon Hun Yang came on Friday bearing a gift from the Kuching Community Centre (http://ecoideal.com.my/kcc/kcc-final_files/page0001.htm). It is a result from the operation of their 3-R Green Centre for reuse and recycling. Thank you, Kuching friends!

Thanks to Kian Foh and friend for getting stuff from my PJ house, to Joanna for her books, thanks to Dahpne for the aromatherapy set. Mrs McCoy for the book and Thermos tupperware, which was very useful for ta-pauing the food in Harbin! Saw Ping for the bracelet, Vege Aunty for the papayas, Ah Keng and Ah Meng for the renovations and grunt work, Cheah for the 2 coconuts...haha, Pang for the mooncakes, also thanks to Soon again for the Roti Boys and Laksa Sarawak paste :)

Of course, I am equally glad for the gift of your thought and presence; no need for any physical gifts. Thanks to Simon and Fong for the Saturday outing and dinner...times have indeed changed since we were kids; to see you guys shopping for diapers and household items is humbling! Thanks Simon for swinging by Cacare for the tea.

Mr Lim for tumpang to Subang Jaya for the seminar. Thanks to Kok Wai for visiting, and to all friends who kept in touch via sms and emails.

Thanks to my family for their steadfast support, and Mr Wong for continuously getting my organic stuff, and his sister Me Ling for her interpretation "services" in China without which I wouldn't understand half the diagnosis!

My gratitude to all of you. May you and your loved ones be well and happy :)

Buddha as the Healer

Last Saturday (13 August) I attended the Buddha as the Healer seminar in Holiday Villa, Subang. It was organised by the Young Buddhist Association Malaysia (www.ybam.org.my). The speakers for the seminar are Venerable Dr K. Sri Dhammananda, Dr Tan Eng Kong and Venerable Dr Bhiksuni Hui Han. The seminar is focussed on the cultivation of mindfulness thru meditation, and the health benefits from mindfulness.

What I learnt from the seminar:

Ven. Dhammananda explained that this life is only part of our journey to the ultimate goal; nirvana. Take this life a preparation for for the next life. When we "die" in this life, it is not the end of our journey. Ven Dhammanand shared his experience when he was diagnosed with prostate cancer.

He laughed when the doctor told him the diagnosis. The shocked doctor asked why he laughed. Ven Dhammananda said it's because he doesn't take the disease seriously. He went for chemotherapy and at the end of 38 days, the tumour disappeared. For a over-80 man, Ven Dhammananda looks good, and his talk is peppered with his great humour and funny anecdotes.

Dr Tan is a psychotherapist. His talk revolved around the research on the beneficial effects of meditation and cultivation of mindfulness. He also mentioned about a Buddhist who embraced death with anticipation because he doesn't want to delay his next life! :)

I could not get much from Dr Bhiksuni's talk because she is not well versed in English, and I had a difficult time following her talk. But she did provide a handout of her talk.

The most useful thing I got out from this seminar is this: to embrace life fully, and treat life and death as part of the life "package", and to fully use this life in preparation for the next. Not only that, the knowledge that our time here and now may be ending anytime will compel us to prepare ourselves and loved ones materially.

When the time comes for us to leave the world, we go knowing that we have paid our dues and done our duty (paid our taxes, for example..hehe) and we go peacefully with great anticipation for what lies ahead. Whatever we do now, or don't do, will be part of our knowledge in our journey to the ultimate goal.

During the Forum Session, I shared my experience as a cancer patient, and asked 2 questions:
1) How to reconcile the Buddhist relatively easy acceptance of death and the will to fight
2) What is the Buddhist approach to health and healing.

I mentioned that I do not want the conventional vision of tackling cancer as a "war" where the body is the battlefield; with the cancer cells as the enemy and white blood cells as the good soldiers. What is the alternative?

To question one, the basis of my question is when I was first diagnosed with cancer, I had a hard time getting Buddhist advise on healing. I was first approached by Christians who talked about divine healing, and even met a bomoh! But advise about Buddhist healing was lacking.

Was it I was not at the right place or have not met the right people? Is it because the easier acceptance of death by Buddhist which make healing less of a priority? Anyway, things got better later when I met with many wonderful people who helped my in my healing journey.

Dr Tan said there is no need for reconciliation because life is precious, and it does not mean the Buddhist concept of "letting go" means we let the disease overcome us without any effort. We try our best, and when the time comes to "go", we "let go" peacefully knowing that we have given our best.

I did not get a satisfactory answer from the panellist for my 2nd question. But one of the participant shared his experience. His son, who is just 3 years old, was diagnosed with cancer of the kidney, and had to be operated upon, followed by chemotherapy. Friends and relatives sent metta to his son's cells including the cancer cells.

This, I think, is the Buddhist approach; not vision of war nor hatred towards any entity. I also did the same thing during my radiotherapy; I wanted this approach to be highlighted by a person other than myself. I am glad someone publicly mentioned this.

I am also elated to get hold of 2 books which hopefully will answer my 2nd question. These two books were published this year, and are two volumes of the book entitled "Don't worry, be healthy". It is written by Dr Phang Cheng Kar and the books compile all the Buddhist approaches to health and healing, including a list of Buddhist healing services in Malaysia.

Keeping the end in sight

I have a series of goals to keep me on track in my journey to recovery. No matter my condition now, I am keeping the end in mind. Not the "ultimate" end..hehe..but ends that mark as milestone in my healing journey. I may be weak in the legs now, I may not not look like the dashing movie star as before, but it doesn't matter; what's important is what I picture as my goals.

My ultimate goal is attending the Olympics 2012 in London. Why this? Well, one is because it's London, and such a nice combination of the Olympics and London; one of my all time favourite city. The other is because of the conventional cancer "cure" format; the statistics of survival at the 1,2,3,4 & 5th year. If the tumours are not detectable by the 5th year, the patient is considered "cured".

So if by 2012, which is 7 years from now I am able to attend Olympics 2012, it will be a triumph.

Other goals include picturing my self with a clear complexion (ahem..I took the opportunity to picture myself with a clearer complexion than I used to have..haha) and gained weight.

I felt picturing myself as already gained weight much easier than picturing something abstract as "healthy" or "better". So I picture to myself throughout the day that I am in a white shirt and khaki pants getting out from the car with my normal weight; I also say to myself that "everyday I am getting FATTER"! Eat your heart out, Christie Chung ;)

I also picture myself in the midst of my former UN colleagues; attending one of the international climate change negotiations. I picture vividly the hugging,joy and tears as we meet each other again.

All these 3 major goals are supplemented by minor goals to keep the path. The 3 are the major milestones I want to achieve and meet in my healing journey.

Daruma doll

A Japanese acquaintance has given me a Daruma Doll (http://wishingfish.com/daruma.html) sometime BC. The Daruma Doll has blank eyes; you wish upon something and paint the pupil on the left eye; when and if your wish is fulfilled, you paint the right pupil.

I have just painted my Daruma's left eye. My wish is to attend the 2012 Olympics in London. Yessir, three bags full.

The Move

I am in the process of moving from my sister's house to the house my mom is staying. The houses are just 5 minutes walking distance apart, but they signify another milestone in my journey. I am leaving the house where I have been staying after being discharged from the hospitals.

For 5 months I have been sleeping on the Paramount bed which is a automated bed for patients, normally used in the hospital. I needed it earlier because the tumour at my C6 vertebrae made it very painful to get up without assistance.

And there was a time in May when the bed was the centre of my universe because I can't walk unassisted. The room at my sis's has seen me incoherent during a seizure, wheezing on a oxygen tank, stumbling with a walker, and wheeled out on wheelchair.

So this move is both symbolic and practical. I am now leaving that bed and room to be in a "normal" bed and room. There is also a garden where I can do my qiqong and tend to a vege and fruit garden. It will also provide some office space for me to work again. Broadband internet connection is installed. In short, more normalcy is returning.

Friends who want to visit can email me for directions. :)

...HAHAHA...

Tackling cancer is a grim task. The patient and the caregiver faces daily hardship, especially in the beginning. It is quite difficult to be jolly or find joy in such tasks. I realised that I have not had a heartly laugh for a long time...you know, those from-the-belly type of guffaws?

It is only recently when my childhood friends like Fong, Simon and Cheah came, and my health has improved, that we find we can revert to our child-like sense of humor. It is not easy to laugh when you can't even breath...haha

Childhood friends fills a special place in our life that somehow no "adult" or "working"-life friends can fulfill. We share something special that has long been built since those innocent times. We joke and laughed at jokes only we understand. We teased each other the way only we can tolerate.

Fong and I sometimes share some telephatic ability (of course, I am the one with the superior psychic ability), like the times one would sing a song when the other was thinking about at the same time, or one would call when the other was thinking of calling.

Oh yes, got a bit distracted...laughter...yes... the ability to have a good laugh when you face cancer. I read that there was a man who, when he found out he has a terminal disease (or so the doctors told him), locked himself in a hotel room and watched comedy movies for a whole day, and the disease disappeared. Something about massive doses of feel-good endorphin flooding his system while he was laughing his way thru the comedies.

Some friends have remarked that when they first decide to visit me, they were unsure about how to react and what to talk about. They are afraid of getting both me and themselves sad and upset because of my condition. I know of two friends who until now could not bring themselves to visit me because they "don't know what to say".

Aiyo...! Just come and be like before...let's laugh and be stupid! Why wreck yourself about what to say? And for those who confessed that they are unsure about what to bring for me when they visit...hej, I am not being greedy, I am happy enough to see you, but if you insist on bring something, well, who am I to say no..hehe.

So if it makes you feel better, and you have movies, shows, stories, books, comics, person, body parts, pets or whatever which will bring the house down with belly-aching guffaws, bring them along!!! Of course, bring your own sense of humour...the kinkier the better ;)

ZzzzZZZzzz...

My sleeping pattern has gone haywire. I sleep at around 6-7pm, wake up at 12 or 1am and that's it; I can't sleep no more. Dr Kana is very concerned about this change in sleeping pattern. But I can't help it, I am sleepy by late evening, and after waking up to go to the washroom, I am not able to sleep anymore.

One of the side effect of the steroid I am taking is insomnia, it could be due to that. The steroid also causes damage to the kidneys, and change in sleep pattern is also one of the symptoms. I will get my urine analysed to see if there is any signs of kidney damage.

But really, if we think of our pre-fire ancestors, what do they do when night falls? Most probably they go to sleep or make babies. What else can you do in the dark? Am I just reverting to the natural ryhthym of our forefathers? But then again, not quite because I wake up in darkness at 1am. But going to sleep in the evening is not that strange.

I guess because of the convenient evening lights that we are able to extend the duration of our activities. Non-noctural animals also goes to sleep when the sun goes down.

Courage

Courage is the art of being the only one who knows you're scared to death. Harold Wilson (1916 - 1995)

China trip

Summary
Met three physicians at Heilongjiang University of Chinese Medicine. All of them insist that I do the brain radiotherapy and to use conventional medicine for my bone metastasis. These will be accompanied by Chinese medicine to strengthen and support my overall health before, during and after the conventional therapies.

Saturday 23 July
KLIA. Vivien, Me Leng and I are sent off by my brother and wife, Ah Keng, Ah Meng, Ah Wei and Ah Mei. I have indulged in roti pratha and curry the whole day in preparation for the trip...haha

Sunday 24 July
Reached Harbin, the capital of the state of Heilongjiang (Black Dragon River) incident-free. My doctors initially have recommended that I increase my steroid dosage to prevent brain swelling in the flight, the cabin may be under low-pressure. I have actually lowered my dosage in anticipation of going off steroid after returning from China.

Noticed scarlet seems to be Heilongjiang's state color, many items are in scarlet including the roofs of buildings and dresses of the ladies. Checked into the student hotel which is within the university's compound; adequate accomodation for only USD6/day. Met Mdm Wang who is the manager of the hotel. She has helped us to contact Prof Liang and had made many helpful arrangement for our stay.

Monday 25 July
Met with Prof. Liang Hua who is Dr Yong's professor. We expected a gray-haired lady who is on the further side of 50s. The actual Prof Liang looks like she just stepped out of the Vogue magazine! An absolutely fashionable youngish lady came to greet us...I was thinking of my male friends who have loved to be surprised like this...haha ;)

Prof Liang Hua is the Dean of International Education College and also the Director of Foreign Affairs Office, so I guess she has to present a contemporary face of the university. I also noticed that the university has dropped "Traditional" from their name, I guess Chinese medicine, like the conventional medicine field, is constantly evolving, so no point refering to it as "Traditional".

She made a call to Dr Jiang the chief oncologist at the university's hospital, and we had an appointment immediately. Dr Jiang met me, and sent me to do chest x-ray. CT scan on the brain will be done on Tuesday. He looked at my previous scans and x-rays together with his students. They find my case very unique.

Went to do X-ray. The physician in-charge of the X-ray division was very grim when he sees my x-ray result. That is until he sees my previous x-rays and realised the progress I have made, and lighthen up a bit. At first he quietly asked my sister if I knew I have cancer...as if!!! Again, his medical students have a great time with my x-rays...hej..I should have a discount for being such a good case study!

Went to see Dr Jiang with my x-ray results, again students converged to listen to his diagnosis. He was very impressed with my progress since May, when I have the mega-breathlessness episode with 3 quarter of my lungs covered my whitish image.

I made contact with Dr Yong in Malaysia, and both Dr Jiang and Dr Yong discussed my case over the phone. Isn't cell phone roaming service great!!??

Dr Jiang diagnosed the x-rays based on his own observation. He did not look at the X-ray physician's report. Seems to be this is the principle adopted by the hospital; do your own diagnosis, the report is for the benefit of the student and patient.

We discussed about tomorrow's brain CT scan. He was very reluctant to it with contrast, which will reveal the brain tumours. The normal CT scan without injection of contrast would not show the tumours clearly. He was concerned about some side effects. So we agreed to do it without contrast but with a more powerful scan..hmmmm

Another interesting practice of the university's doctors is they accompany their patients to the various department, including the cashier! I am not sure if this is the norm, but I saw at least two doctors accompanying their patients. Maybe for special patients like me..hehe..I would have thought this kind of work a doctor would assign to their nurses.

Woke up during the night because of earthquake tremor. Felt the hotel shook twice. Went back to sleep immediately. Ha..my first tremor experience!

Tuesday 26 July
Went to do CT scan. Got the result. The physician in-charge of CT scan at first did not have the benefit of my previous scan. He did not notice the faint image of the tumor. He at first reported that dementia is setting in based on the dark lines at the sides of my brain...ugh!!!! Dr Jiang later said this is not right. Anyway, after the CT scan physician saw my previous scans, he changed his report. He looked more carefully and noticed that the bigger tumor has remained the same size.

Dr Jiang concurs, but he also cautioned that there may be smaller tumors which may not be visible. He said that my tumors may be stabilised due to the Chinese medicine I am taking.

He recommended that I do brain radiotherapy, and to take a medication 153SM intravaneously. These will be accompanied with Chinese medicine. He also asked me to continue my qiqong practice.

Went back to the hotel. Mdm Wang said a physician will be coming to see another patient at the hotel, and he can make time to see me. Dr Wang is also a prominent physician who speciallised in "external" Chinese medicine. Prof Liang in the meantime has recommeded us to see one Dr Sang.

Dr Wang came to my hotel room to see me. Hej, how many doctors would do this...doing house (hotel) call at a moment's notice! Dr Want looked at my scans and results and said the best person to see me is Dr Sang, who is also recommended by Prof Liang. He called Dr Sang who agreed to come and see me, also at a moment's notice.

Dr Sang is a young physician, I think a year younger than me. He is a specialist in Chinese "internal" and skeleton medicine. He took one look at my April's bone scan and exclaimed my bone metastasis is so extensive. Yup, the scan shows me like a Dalmation; hot spots are all over my skeleton. He said normally a person with such an extensive bone metastasis would be bed-ridden wrecked with pain. He said it's amazing I am still up and about...

He looked at my other scans and said he could not reconcile the images with the person in front of him. He again said I have made tremendous progress to be able to see him today.

He also recommended to do brain radiotherapy to the brain,and concur with Dr Jiang about the bone metastasis. I was expecting both him and Dr Jiang would say Chinese medicine can handle these without radiotherapy or conventional medication..oh well...

Like Dr Jiang and Prof Liang, he also read Dr Yong report about my Chinese medicine treatment in Malaysia. They agreed with the therapy course so far. Dr Sang proceed to write his recommendation for the way forward, with a list of medication. I again made contact with Dr Yong and both of them discussed my case. Dr Sang asked Dr Yong to update him every month or whenever necessary to jointly heal me. He said my medication would need to be adjusted every month based on my condition.

He said my condition is stabilised maybe due to the qiqong and Chinese medication I am on; especially my pain-free bone metastasis. I actually tend to think the Iressa is the one which has arrested the lung tumor, and allowed the complementay medicine is catch up.

By this time, I felt my objective in China is fulfilled. I am looking forward to an early home coming to Malaysia.

Wednesday 27 July
Went to Dr Sang's clinic to get the medication. He invited me to his consultation room where his students are having their practical. Again, I was presented as a unique case, and his students eager lapped up his diagnosis. I distributed my name card which proclaimed me as a cancer patient, and my blog's URL. Dr Sang thanked me for being strong.

Paid for the medication, but the medication need to be prepared, and would only be ready Thursday afternoon 2.30pm. Went to the airline office for an earlier return, but there is no flight on Friday, only on Thursday which is not possible because of the medication. So looks like we still have to return on Saturday.

Thursday 28 July
Rained in the morning. Went to get my medication. Realised why it took some time; there are like 300 paste-like individually wrapped medication. After the clinic, returned to hotel. After a short rest, went to a "Russian" street and an "Indian" street. Quite an interesting area, Heilongjiang borders Russia, and there are a lot of Russian previously.

The Russian street is a short street where Russian goods are sold; clothing, the Russian Masytroka dolls, firearms and other army gadgets. The proprieters are all Chinese. The Indian street is another short street with Indian restaurants. The only Indians we saw are a few Sikhs guarding the entrance.

Found a restaurant which is able to prepare food to suit our palate. The food in Harbin is too salty for our taste.

Friday 29 July
Another day to do some touristic stuff. Had a final good dinner at the restaurant in Russian street.

Saturday 30 July
Homeward bound! Yeaaa...!!!