TAIPEI - CHIAYI - KENTING - SINCHENG
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18 February 2012
Follow up
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| doctor's drawing |
It was not long before he returned and called us into his consultation room. He remembered us, and quickly pulled up mum's files, including the latest MRI scan from three days before (yes, it's that efficient...).
Unlike other doctors mum has consulted, this one at the new hospital who is in charge of mum's CyberKnife treatment, took us through the images. He explained slowly what he had done, how he assessed the risks and planned the treatment to be spread out over four days: one day for the lower spine area (section L5), and three separate days for the T2 section higher up. He was courteous and friendly all the way, and even picked up a pen and paper and began to draw. As the T2 section is immediately below the column which was removed in the recent surgery, and where a metallic support has been installed in its stead, the doctor could not use gamma ray radiation from a direct angle. The metallic components would deflect the rays, and instead of killing the tumour cells damage cells in the spinal cord and also esophagus. So the solution is to radiate from an angle to minise damage to surrounding body parts, and maximise expose of the tumour to the radiation. But of course, even at an angle, a bit of the radiation will still affect the surrounding parts. Mum told me later in the evening that she is feeling a throat ache and having pain swallowing. The symptoms are coming...
 |
| Compression on the nerve |
"What about the numbness in my right hand?" mum asked. The numbness that has caused her signatures to be no more than a scribble. The numbness that now means every time we go out to eat, I have to request a fork (which often the waiter/waitress would hand to me, thinking I need it... I have since been carrying a fork with me in my bag.)
The doctor showed us another image of her spinal cord. "You see this lump here? That's the lump compressing on the spine and affecting mobility in the right hand". The gamma ray was directed at that lump, but the effects of the radiation is not immediate, and it will take around three months or so for the lump to shrink and disappear. Much longer than I expected, for I was thinking once radiated the tumour would just vaporise and break down... I was disappointed. Mum has to live with numbness in her hand and arm again for several more months. She went through that ordeal already with her left hand and left arm. And now it's the right one... I remember thinking last year when she was in almost constant pain and feeling constaly numbness, thank goodness it's not her right hand, which she uses for everything. But it now is...
"And there's another section that I am looking at and planning treatment for," the doctor said as he switched images and located section C2, five sections higher than the removed section. Five sections closer to the brain.
He showed us what a normal, unaffected bone structure looks like. White, with light greyish patterns on the inside. Section C2 is obviously much greyer, and the patterns are denser and more complex. I looked at it with dread. I looked at the image with question the question: Why...? Why...? But there is no reason. There is no answer as to why. It just is.
 |
| C2 |
I could tell mum was confident and comfortable with this doctor, even more so than with her main physician, whom she is beginning to distrust and even dislike because of his attitude, especially after her surgery. So she asked the CyberKnife specialist to recommend one, preferably somewhere around where we live.
He smiled and was very frank with us, as was his assistant sitting next to his desk. There is a specialist cancer hospital close by, which mum and I both thought might have better doctors and would like to be transferred to. But they were frank with us: that hospital is for rich people with bottomless pockets. They will ask you to pay and pay and pay, and the doctors aren't really very good. And he also told us at his own hospital, the doctors are not of good quality either. Besides, it's far too far away from where we live. "Better stay where you are, and I will refer you to a new doctor at the same hospital where you are now. I'll call you soon," he said, with a smile.
I thanked him profusely for his patience, for his understanding and for spending almost twenty minutes with us, while outside I noticed after I left his office, there were already half a dozen people waiting. "There is a humane doctor, one who really cares about the patient's wellbeing..." Mum smiled, and looked reassured for a moment, and perhaps I was imagining it, but she also looked confident, and a little bit stronger.
The day was not over yet, for she still had an appointment with the gastroenterologists for her stomach upsets and almost daily vomiting for over two weeks already. Even the medicine that was prescribed to her does not seem to work too well.
The doctor took a look at the Xray that was made of her last week, and saw no sign of gas accumulation. "We need to do an endoscopy to really find out what is wrong, otherwise we can't tell for sure..."
Mum, I could see, was filled with dread. "That's so uncomfortable... And I just went through this surgery..." I know it myself, how very uncomfortable and sickening the experience can be when a tube is shoved down your throat till you gag... She did not want to go through it, and said she will just take some pills and wait and see if there is an improvement.
There could be any number of reasons why she has been throwing up. Her bad quality of sleep and nausea over the past two, three weeks. The steroids she has been taking in the run up and also after her CyberKnife treatment... The glutamine I bought her and asked her to take every day could also induce vomiting... Even the treatment itself may cause stomach upsets and induce throwing up. Many number of reasons.
Mere moments later, she threw up again.
Love is great
(translation mine)
Love is great
愛很大
Those who have collapsed and broken down, are reborn.
Those who have been hurt, are healed.
Those who do not wish to leave, have returned.
Those who are afraid of loneliness, have become happy.
Look at the night sky of love, there is a river of comets.
Listen to the heart of love miraculously sing a song.
Each one of us is blessed,
Because our love is great.
Those who have been hurt, are healed.
Those who do not wish to leave, have returned.
Those who are afraid of loneliness, have become happy.
Look at the night sky of love, there is a river of comets.
Listen to the heart of love miraculously sing a song.
Each one of us is blessed,
Because our love is great.
Love is great, there is you, there is you, there is him.
Love is great, let us all sing out loudly.
Love is great, radiating the warmth of the rays of the sun.
Love is great, after the dark night there will be a bright day.
Love is great, do not differentiate you, me, him.
Love is great, we are not afraid of anything.
Love is great, spread the wings of hopes.
Love is great, there is nowhere that cannot be reached.
Love is great, let us all sing out loudly.
Love is great, radiating the warmth of the rays of the sun.
Love is great, after the dark night there will be a bright day.
Love is great, do not differentiate you, me, him.
Love is great, we are not afraid of anything.
Love is great, spread the wings of hopes.
Love is great, there is nowhere that cannot be reached.
Those who are cold and frozen, have melted.
Those who have cried and shed tears, have smiled.
Those who have been torn to shreds, have become whole.
Those who have withered and shed, have blossomed.
Look at the sky of love,there is a dove of peace.
Listen to the symphony of happiness in the heart of love.
Each one of us is blessed,
Because our love is great.
Love is great, there is you, there is you, there is him.
Love is great, let us all sing out loudly.
Love is great, radiating the warmth of the rays of the sun.
Love is great, after the dark night there will be a bright day.
Love is great, do not differentiate you, me, him.
Love is great, we are not afraid of anything.
Love is great, spread the wings of hopes.
Love is great, there is nowhere that cannot be reached.
Love is great, Love is great, Love is great, Love is great, Love is great…
Those who have cried and shed tears, have smiled.
Those who have been torn to shreds, have become whole.
Those who have withered and shed, have blossomed.
Look at the sky of love,there is a dove of peace.
Listen to the symphony of happiness in the heart of love.
Each one of us is blessed,
Because our love is great.
Love is great, there is you, there is you, there is him.
Love is great, let us all sing out loudly.
Love is great, radiating the warmth of the rays of the sun.
Love is great, after the dark night there will be a bright day.
Love is great, do not differentiate you, me, him.
Love is great, we are not afraid of anything.
Love is great, spread the wings of hopes.
Love is great, there is nowhere that cannot be reached.
Love is great, Love is great, Love is great, Love is great, Love is great…
17 February 2012
Dreaming of the ex
A slap on the face was what I gave him. He looked stunned and was about to cry. A mutual friend of ours stood by next to us and was surprised by my action, yet smiled. Did he deserve it, and for what? I don't know. I know only I was very upset at him for something. I've never physically done that to anyone before, and just hope I never will, whatever my ex does or did to me.
That was one dream. What was strange was moments later (or so it seemed), I had another dream of my ex. This time we were lying in bed, next to one another. It was, and felt like old times. Beautiful old times, when we could just lie next to one another, touch one another, feel each other's warm bodies and groins, and talk... The passion, the deep, deep passion was intense, used to be so mesmerising, used to make me weak and make me yearn for more. And it was all there in the dream.
But that is all over now. I have not thought about my ex like that for some time. Or at least I try not to. We are past that now. He told me to move on, go see other people. Because he has. Am I that forgettable? Was what we had so easy to replace and forget? All that in the past is slowly, slowly becoming a distant memory, perhaps one neither of us want (or just I don't want?) to be reminded of. Because it was too beautiful? Because it is too painful to remember?
It was the most bizarre set of dreams, which comes after my ex wrote in reply to an email I wrote to him about why I have been keeping silent and not wanting to talk to him. The reasons were all so clear to me on the night of my departure, and yet he says he does not remember what he said or what was said. He was vague in his email, saying he has had much time to reflect over the past two months or so. He said he was at times hurting and crying, and yet I was not there for him...
I know I have not been there for him, I know that too, and I apologised for not being able to be there for him. But I just don't understand why he has such an urge to want to talk to me when he is down? Is he not happily with someone else? If he has someone else already with whom he can be happy with, why can't he turn to that person and pour his heart out? I have no place in his life if he wants to move on with someone else. I am and have been perhaps the very reason of his unhappiness and his inability to move on over the past year or so...
And who was there for me when I wanted to cry? When I wanted to talk? I could not turn to him, despite all the reassurances he said that he can be there to listen. Listen and then what? Distract him from his happiness, from the life he wanted to build up? Distract him with news about cancer, about the vomiting, the silences at home because mum cannot or does not want to talk much anymore? I care about him still, I love him still. Perhaps much too much after the painful things that have been said to me... But I'm not sure what role I can play in his life any more. This is a question I have been wrestling with for some time already...
That was one dream. What was strange was moments later (or so it seemed), I had another dream of my ex. This time we were lying in bed, next to one another. It was, and felt like old times. Beautiful old times, when we could just lie next to one another, touch one another, feel each other's warm bodies and groins, and talk... The passion, the deep, deep passion was intense, used to be so mesmerising, used to make me weak and make me yearn for more. And it was all there in the dream.
But that is all over now. I have not thought about my ex like that for some time. Or at least I try not to. We are past that now. He told me to move on, go see other people. Because he has. Am I that forgettable? Was what we had so easy to replace and forget? All that in the past is slowly, slowly becoming a distant memory, perhaps one neither of us want (or just I don't want?) to be reminded of. Because it was too beautiful? Because it is too painful to remember?
It was the most bizarre set of dreams, which comes after my ex wrote in reply to an email I wrote to him about why I have been keeping silent and not wanting to talk to him. The reasons were all so clear to me on the night of my departure, and yet he says he does not remember what he said or what was said. He was vague in his email, saying he has had much time to reflect over the past two months or so. He said he was at times hurting and crying, and yet I was not there for him...
I know I have not been there for him, I know that too, and I apologised for not being able to be there for him. But I just don't understand why he has such an urge to want to talk to me when he is down? Is he not happily with someone else? If he has someone else already with whom he can be happy with, why can't he turn to that person and pour his heart out? I have no place in his life if he wants to move on with someone else. I am and have been perhaps the very reason of his unhappiness and his inability to move on over the past year or so...
And who was there for me when I wanted to cry? When I wanted to talk? I could not turn to him, despite all the reassurances he said that he can be there to listen. Listen and then what? Distract him from his happiness, from the life he wanted to build up? Distract him with news about cancer, about the vomiting, the silences at home because mum cannot or does not want to talk much anymore? I care about him still, I love him still. Perhaps much too much after the painful things that have been said to me... But I'm not sure what role I can play in his life any more. This is a question I have been wrestling with for some time already...
Disappointment...
I was not amused by my cousin's comments.
Earlier in the day, my cousin told me about seeing so many gay people holding hands on valentines day at Danshui, a romantic place close to the sea that attracts a lot of couples. "I can't stand two guys holding hands," she said. I told her gay people are people too, people who long for love and affection like everyone else. "You know, gay people are everywhere..."
Later that night, I went home, and saw on her facebook that she had written "I cannot accept gay people as friends". In English even. I was really upset.
I've been spending hours tutoring her English, because she's about to take a proficiency test. And she's been spending a lot of time with me because she's facing the breakup of her four year relationship. I've really there to comfort her and help her in any way I can. And yet this is her opinion of gays.
So I confronted her. I asked her out one night and we went to a local bar, the first time I've been in such a place for months. We ordered drinks and I began by saying how unhappy I am about her comments.
"Remember I told you gay people are everywhere?"
It took a little while, but she got the message. "You? You are..." There was surprise and disbelief in her eyes and voice.
"I told you, gay people are everywhere." I explained how hurtful her words were, and she said she just cannot stand to see two guys being intimate. Strangely, two girls is alright because my cousin went to an all girls school.
She wasn't understanding the point. This is the twenty-first century, and she's a medical nurse, how can she openly discriminate gay people like that. I told her about homophobia overseas, anti-gay sentiments and even hate crimes in supposedly progressive societies of America and Europe. Though those extreme forms of discrimination and violence against gays are unheard of here in this country, gays still have a hard time coming out and finding acceptance in society. "You probably have gay friends but you just don't know it," I said.
My cousin took a big gulp of her beer, and ordered another. For moments she was just speechless. "You are gay? Since since when did you know?"
I asked her the same question back. I don't fit at all into that stereotype of the "typical" gay. I'm just the way and the person I am, and I am comfortable being who I am. I have no need to wear fancy clothes or carry branded things around just to prove how much of a fashionista I am. I have no need to be flamboyant and act overly feminine to to prove I am queer and I am here. I have dreams and aspirations, I hurt and I love like everyone else. I am a guy who likes guys "So what? What does that matter? How does that even influence my relationship with you?"
My cousin calmed down a bit and was apologetic about her comments earlier. Yet, the damage has been done, and I am deeply disappointed in my cousin. All the ways I've tried to help her, and even thinking of helping her financially to go travel and to go see me in Canada, and deep down this is the person my cousin is... If there is one thing I am firn on it is if you don't like an important aspect of me and of who I am, then I see very little point of continuing our relationship. I just feel I have more to gain than lose if I do not have such a person in my life... And with everyone I meet I am, for the most part, honest and true. I have no regrets if I am to lose someone because of opinion differences. Perhaps the other will have more to regret, but that is not my concern...
I've explained to her my feelings, and it's up to her to show some initiative in maintaining our relationship.
16 February 2012
Concern
"I'm worried that you might be 'cheated' on" (被人騙), mum said, in response to how I was talking excitedly about my plan to cycle around the island. Alone. It was a little after half past nine, but she was already in bed. The entire day, she has been so weak, so tired. And the severity of the numbness of her right hand has worsened. Even using a fork to pick food up is a struggle. Even using the spatula to stir vegetables in the wok is a challenge.
" 'Cheated' on? By whom? Please explain!" I said. In Taiwanese, a language spoken by a people who love euphemisms ambiguities, to be "cheated on" generally means someone taking advantage of you. In a variety of ways... gauging you with exuberant prices, exploiting you sexually, perhaps leading you astray and taking you to "improper" places. I really had no idea what mum meant.
"I'm just worried about you being on your own..."
"Worried! I've lived in London, not exactly the safest city in the world. I live in Montreal, where there are gangs and shootings and plentiful of drugs. I grew up alone in the Netherlands! Why were you not worried about me then, but worried about me in Taiwan?" I know a mother is always concerned. But in Taiwan there is a paranoia that danger is everywhere. I blame it solely on the news media and sensationalist newspapers that thrive on reporting on crime, suicides, kidnappings, fires, accidents and traffic crashes. Killings, rape, disgraced celebrities... everything and anything that is remotely negative can become news. And there are at least half a dozen channels that are dedicated to news alone. News about how a college student burnt herself using the hair curler, news about how a truck cruising the highway was seen 'unloading' cargo without the driver noticing... Most recently, the news of a celebrity and her boyfriend, who in a state of drunkedness allegedly kicked a taxi driver and caused him broken ribs, captured the nation's attention for several days.
"Taiwan is not that dangerous! Taiwanese people are the kindest and most friendly people I have come across," I said. I may be biased, but even friends from overseas who have visited my homeland have told me how touched they are by the warmth of the people, and by how willing people are to extend a helping hand to strangers. "Sometimes too kind," I said. And I went off on a rant about how historically Taiwanese people have always been subjugated by another regime, the previous of which was the murderous Chinese Nationalists...
"You know why I want to go on this trip? I want to know my homeland" I said. Too many people who live here do not know the name of the local river nearby, and yet have been indoctrinated to know off by heart the names of rivers in mainland China. A phenomenon that I find alarming, and solely because the Chinese Nationalist regime for decades brainwashed people into thinking Taiwan is a part of China, and that we are all Chinese. Hogwash...
"And I want to find myself on this trip. I want to find direction, find out what I would like to do in life, what I want out of life," I explained. Why now? Because I can. Because I need to. I simply need to take the time for myself and clear my mind, get away a bit from being faced with mum's condition every waking moment... get away from the seeing mum sick, watching her vomit, seeing her lie in bed all day. Is it selfish of me to get away, to want to 'escape', especially as I am sure mum would do anything to 'escape' from her condition, to get away from her old, sick body....? Is it selfish of me to want to go off on a personal quest and soul-searching? I'm not sure. I can think of a lot of reasons why I would like to go off on my own and bike around for ten, twelve days. But what is the reason not to?
I think after all the time I have spent with mum, and with all that I do for her, I deserve a little time alone, I deserve a break.
I hugged mum, and lay next to her for a few moments. Silently, I hoped her body can rest... silently, I hope that she can have an undisturbed night of sleep, for she has for so many, many days been restless and sleepless, and it is wearing her down. "I know you care about me, and that you are concerned. But I will be fine. I really want to do this."
She smiled, and nodded.
" 'Cheated' on? By whom? Please explain!" I said. In Taiwanese, a language spoken by a people who love euphemisms ambiguities, to be "cheated on" generally means someone taking advantage of you. In a variety of ways... gauging you with exuberant prices, exploiting you sexually, perhaps leading you astray and taking you to "improper" places. I really had no idea what mum meant.
"I'm just worried about you being on your own..."
"Worried! I've lived in London, not exactly the safest city in the world. I live in Montreal, where there are gangs and shootings and plentiful of drugs. I grew up alone in the Netherlands! Why were you not worried about me then, but worried about me in Taiwan?" I know a mother is always concerned. But in Taiwan there is a paranoia that danger is everywhere. I blame it solely on the news media and sensationalist newspapers that thrive on reporting on crime, suicides, kidnappings, fires, accidents and traffic crashes. Killings, rape, disgraced celebrities... everything and anything that is remotely negative can become news. And there are at least half a dozen channels that are dedicated to news alone. News about how a college student burnt herself using the hair curler, news about how a truck cruising the highway was seen 'unloading' cargo without the driver noticing... Most recently, the news of a celebrity and her boyfriend, who in a state of drunkedness allegedly kicked a taxi driver and caused him broken ribs, captured the nation's attention for several days.
"Taiwan is not that dangerous! Taiwanese people are the kindest and most friendly people I have come across," I said. I may be biased, but even friends from overseas who have visited my homeland have told me how touched they are by the warmth of the people, and by how willing people are to extend a helping hand to strangers. "Sometimes too kind," I said. And I went off on a rant about how historically Taiwanese people have always been subjugated by another regime, the previous of which was the murderous Chinese Nationalists...
"You know why I want to go on this trip? I want to know my homeland" I said. Too many people who live here do not know the name of the local river nearby, and yet have been indoctrinated to know off by heart the names of rivers in mainland China. A phenomenon that I find alarming, and solely because the Chinese Nationalist regime for decades brainwashed people into thinking Taiwan is a part of China, and that we are all Chinese. Hogwash...
"And I want to find myself on this trip. I want to find direction, find out what I would like to do in life, what I want out of life," I explained. Why now? Because I can. Because I need to. I simply need to take the time for myself and clear my mind, get away a bit from being faced with mum's condition every waking moment... get away from the seeing mum sick, watching her vomit, seeing her lie in bed all day. Is it selfish of me to get away, to want to 'escape', especially as I am sure mum would do anything to 'escape' from her condition, to get away from her old, sick body....? Is it selfish of me to want to go off on a personal quest and soul-searching? I'm not sure. I can think of a lot of reasons why I would like to go off on my own and bike around for ten, twelve days. But what is the reason not to?
I think after all the time I have spent with mum, and with all that I do for her, I deserve a little time alone, I deserve a break.
I hugged mum, and lay next to her for a few moments. Silently, I hoped her body can rest... silently, I hope that she can have an undisturbed night of sleep, for she has for so many, many days been restless and sleepless, and it is wearing her down. "I know you care about me, and that you are concerned. But I will be fine. I really want to do this."
She smiled, and nodded.
15 February 2012
Sick...
Two in the morning. I hears mum wake up and the toilet lid.
Sick again.
Why do I even bother writing about the times when she's sick and throwing up...?
Sick again.
Why do I even bother writing about the times when she's sick and throwing up...?
Life planning
 |
| A provocative campaign to raise awareness for colorectal cancer. |
The question been on my mind for some time. What are alternatives are there if one
were to opt to stop all treatment? I know what the likely consequences
of that will be, but what does that mean in practical terms? What does
that mean at the "end of the road"?
I saw the words "HOPE" on an billboard at a metro station some weeks back. It was an ad for a charitable foundation specialised in providing support and aid for cancer patients and their families. So I looked up the address, and used the time alone to pay the charity a visit.
It was a little office in a residential area, located in an obscure side street. And yet, on the door, in big colourful letters "Little Station of Hope". The organisation has existed since 1982, and was formed by a number of doctors and nurses who wanted to create a body to provide cancer patients and their families exactly what the name says: hope. Hope in terms of offering medical advice, organising gatherings and courses, offering counseling and financial support for those in need. There are even books and wigs you can borrow if you need to.
It was a little office in a residential area, located in an obscure side street. And yet, on the door, in big colourful letters "Little Station of Hope". The organisation has existed since 1982, and was formed by a number of doctors and nurses who wanted to create a body to provide cancer patients and their families exactly what the name says: hope. Hope in terms of offering medical advice, organising gatherings and courses, offering counseling and financial support for those in need. There are even books and wigs you can borrow if you need to.
When I entered, it was very busy, for a class just ended. I stood by the door for a little while before a lady came up to me and asked what I was interested in. She was
extremely friendly and listened to me describe mum's condition and
treatments over the last six years. Surgery to remove a Stage III tumour
on the colon in 22006, relapse in 2008 and annual chemotherapy ever since. I had
pictures of mum's medical report stored on my phone, so I listed the
drugs mum has used or taken.
"Four years already?
She's done chemotherapy for four years?" There was disbelief in her
voice. And from her expression I could see she finally understood why
mum (and I, or perhaps I most of all?) are considering to just "let
things be". "Oh, she really has used all the possible drugs there
are..."
And I reminded her that mum also did radiotherapy last year, and underwent a major surgery a month and a half ago. And just today, she completed four sessions of cyberknife treatment. What else is there that she has not tried? And the cancer keeps returning, keeps popping up in other areas... So brave, so very brave is my dear mother... I could burst into tears at the mere thought of how much she underwent in the past couple of years, and how long I have accompanied her on this journey. I held back...
And I reminded her that mum also did radiotherapy last year, and underwent a major surgery a month and a half ago. And just today, she completed four sessions of cyberknife treatment. What else is there that she has not tried? And the cancer keeps returning, keeps popping up in other areas... So brave, so very brave is my dear mother... I could burst into tears at the mere thought of how much she underwent in the past couple of years, and how long I have accompanied her on this journey. I held back...
The nurse-volunteer explained to me the possibilities, and
that at this stage it is too early to say in detail what kind of care
mum would need. Frankly, we are not there yet, despite mum's worsening sores and continually weak health. But of course it is always good to think ahead, to plan ahead. To plan for life (and, yes, plan for dying and death...).
"Palliative care" is an
option if you don't want to continue any form of treatment. In line with what I have been thinking, it doesn't mean giving up. It just means that the patient stops receiving treatment for cancer and just "let things be". The focus will then to alleviate pain and ensure the patient is as comfortable as possible, till the very end You still have to go to the hospital every two months or so to followup on
developments. If there are symptoms, or any worsening of the illness,
the doctor can prescribe ways to reduce or alleviate the pain.
 |
| Four celebrities, joined by members of the public, are doing a 21-day run around the island to raise awareness for ovarian cancer. |
"It
may be possible the cancer will spread to her stomach, damage her
digestive system, infiltrate the kidneys..." the care worker explained. By that point, feeding regimes will have to be established, and also we will have to think about ways to get rid of any bodily wastes. By that point, at the very end, mum will definitely need constant care and need someone to be by her side all the time to attend to her needs. Much like the first weeks immediately after her surgery. All this can be done at the hospital, or at home, where a healthcare worker can visit regularly to ensure a comfortable and dignified end. Should things come to that, details will have to be talked through with the doctor and healthcare workers.
The way she described possible outcomes of not proceeding with treatment sounded daunting, bleak and frankly painful. But is not the alternative, of being in the hospital day in and day out, of being so physically and mentally eroded by chemicals and medicine, really a better option? I will have to return another day and bring mum to talk about all of this. For it is her life, and she must understand and get to fully know what the possibilities are.
"For now, just do as you have always done," the nurse-volunteer said. Be like normal people, do things you enjoy, travel. There is no reason not to. There really is no reason not to.
"Have you thought about what your plans are?" she asked.
I was taken aback by her question, for I went to the charity with mum's condition in mind, and had not really thought me or my plans would be brought up. I told her my life over the past few years, all the traveling, all those restless, and at times sleepless, nights. I told her my fears of committing to anything, whether it's a career or in my personal life. She listened quietly and nodded. She understood.
"Often what a parent wants is not for you to give up everything because she is ill..." she said, "Of course cancer can affect family members and future plans, but have you thought about perhaps your mum would be happier and can "go" easier if you were more settled?"
I did. All of this I did think about. I know, and I can see that my presence over the long run can cause her much grief, much pressure-- to the extent that she has even told me before she would want to "go" (ie die) quicker so I can go off and start living, instead of hanging around her and taking care of her. But there is always this fear.... this incessant fear that if I go off and pursue my dreams and my happiness, I may miss that day she...
"Sounds like there are no regrets between you and your mother," she said calmly, "There does not necessarily need to be a conflict between being there for your mother and doing what you want in life." How many people like my mum and me has she come across throughout her career and her time at the charity? The feelings of care, of love and fears of losing a dear, dear one is universal. "If there are no regrets, then that does not mean you are abandoning her. You can still give her moral support, talk to her often, encourage her. I am sure you will be there at that crucial end..."
I sure hope I will be, I can be... I so much do hope so... But that is not for me to decide, for I cannot influence fate, I cannot influence the way or speed at which mum's cancer chooses to grow or spread... I cannot influence, let alone control, the unknown future.
All I can do is find mum a network of support she can turn to other than me, for I am not a medical expert, nor am I someone who can fully relate to what it feels like, what it really feels like, to be a cancer patient. All I can do is show her there are other options than face treatment after treatment.
And this is what I am trying to do. Trying to do.
"For now, just do as you have always done," the nurse-volunteer said. Be like normal people, do things you enjoy, travel. There is no reason not to. There really is no reason not to.
"Have you thought about what your plans are?" she asked.
I was taken aback by her question, for I went to the charity with mum's condition in mind, and had not really thought me or my plans would be brought up. I told her my life over the past few years, all the traveling, all those restless, and at times sleepless, nights. I told her my fears of committing to anything, whether it's a career or in my personal life. She listened quietly and nodded. She understood.
"Often what a parent wants is not for you to give up everything because she is ill..." she said, "Of course cancer can affect family members and future plans, but have you thought about perhaps your mum would be happier and can "go" easier if you were more settled?"
I did. All of this I did think about. I know, and I can see that my presence over the long run can cause her much grief, much pressure-- to the extent that she has even told me before she would want to "go" (ie die) quicker so I can go off and start living, instead of hanging around her and taking care of her. But there is always this fear.... this incessant fear that if I go off and pursue my dreams and my happiness, I may miss that day she...
"Sounds like there are no regrets between you and your mother," she said calmly, "There does not necessarily need to be a conflict between being there for your mother and doing what you want in life." How many people like my mum and me has she come across throughout her career and her time at the charity? The feelings of care, of love and fears of losing a dear, dear one is universal. "If there are no regrets, then that does not mean you are abandoning her. You can still give her moral support, talk to her often, encourage her. I am sure you will be there at that crucial end..."
I sure hope I will be, I can be... I so much do hope so... But that is not for me to decide, for I cannot influence fate, I cannot influence the way or speed at which mum's cancer chooses to grow or spread... I cannot influence, let alone control, the unknown future.
All I can do is find mum a network of support she can turn to other than me, for I am not a medical expert, nor am I someone who can fully relate to what it feels like, what it really feels like, to be a cancer patient. All I can do is show her there are other options than face treatment after treatment.
And this is what I am trying to do. Trying to do.
Another MRI
She went inside the MRI room, and the technician closed the giant green door. On the door was a sign warning of a strong magnetic field.
A terrible racket began. Incessant, deeply annoying, and loud, it's like the sound of a machine gun rattling rapidly; a sound which at times changes in tone and pitch to resemble the sound of a water pump hard at work. If it sounds like this behind the closed door, what it must be like for mum right inside...
The technician's assistant came out, a lively young lady with a quick pace and quick voice. She explained to me that contrary to what the doctor had informed us, mum needs to have radioactive tracers injected in order for the MRI scan to be more accurate. "Otherwise, there are things that may be missed". The word "missed" she said in English, which made me wonder whether she studies abroad or is an overseas Taiwanese like me. She went on to explain that on the doctor's instruction for the MRI scan it explicitly said that the injection of a trace chemical is essential.
At first she was unsure of whether she could tell me mum's medical details. Perhaps she thought I did not understand what was written in English on the doctor's note. "Meta," she explained, "Means metastasis". There's a suspected metastasis to section L5.
My heart sank yet again...
Is this why just now mum's signature on the consent form looks likes a weak scribble?
Is this why mum has to ask me every-time to open her water bottle for her? Why she has to eat with a spoon and fork nowadays, instead of with chopsticks?
The machine behind the green door continues to rattle rapidly ad loudly. Another test, another scan, another result, and perhaps yet another setback.
A terrible racket began. Incessant, deeply annoying, and loud, it's like the sound of a machine gun rattling rapidly; a sound which at times changes in tone and pitch to resemble the sound of a water pump hard at work. If it sounds like this behind the closed door, what it must be like for mum right inside...The technician's assistant came out, a lively young lady with a quick pace and quick voice. She explained to me that contrary to what the doctor had informed us, mum needs to have radioactive tracers injected in order for the MRI scan to be more accurate. "Otherwise, there are things that may be missed". The word "missed" she said in English, which made me wonder whether she studies abroad or is an overseas Taiwanese like me. She went on to explain that on the doctor's instruction for the MRI scan it explicitly said that the injection of a trace chemical is essential.
At first she was unsure of whether she could tell me mum's medical details. Perhaps she thought I did not understand what was written in English on the doctor's note. "Meta," she explained, "Means metastasis". There's a suspected metastasis to section L5.
My heart sank yet again...
Is this why just now mum's signature on the consent form looks likes a weak scribble?
Is this why mum has to ask me every-time to open her water bottle for her? Why she has to eat with a spoon and fork nowadays, instead of with chopsticks?
The machine behind the green door continues to rattle rapidly ad loudly. Another test, another scan, another result, and perhaps yet another setback.
14 February 2012
Treatment Day Four
The fourth and final day of treatment. Or so I hope.
We again took the taxi to the hospital, and mere minutes after getting off, I could see mum was unwell again. Her mouth puffed, and her lips sealed tightly. I instinctively took out a plastic bag from my backpack and gave it to her quickly. Plastic bags have become a "must-carry" whenever we go anywhere now.
As expected, she vomited. Everything from breakfast came out again. I patted her back. She coughed and choked. I swallowed my tears.
I accompanied her inside the operating room, and helped her onto the operating table. She closed her eyes and grimaced in pain. "I know, I know... But this is the last treatment," I said to her, grabbing her hand. The very last treatment I do hope. The very last treatment...
The radiologist kindly asked me to leave the room. I paced around outside, watched the crowd, imagined mum inside. A guy next to me was watching a comedy on his hand-held device, and his laughter filled the corridor. Later, he got up and picked up who I believe is his son. His son who was in a vegetative state. The man gently grabbed his son and placed him in a wheelchair. I watched them disappear into the crowd. The echo of the man's laughter remained in the corridor, remained in my head...
Whirring sounds and a low siren constantly sounded. The technician operating the machine again went in and out of the operating room to adjust mum's position and operating table. Every time he passed me, he would gesture to me to sit and say, "Not yet. It's not finished yet." I would weakly smile at him. I would thank him. Then about forty minutes or so after mum went in, the red light turned off, and the brown door slowly, slowly opened.The technician walked by and smiled at me. "Please, you can go in now..."
I walked inside, and saw the gigantic machine, motionless. With its metallic arm, its impressive-looking head, it stood there, looking proud and imposing. Mum lay there, also motionless. The blue mould that was made of her body the week before made sure that she lies as still as possible. Mum's eyes were closed, and only when I called out "Mama..." did she open her tired eyes.
"Is it over?"
"It is over." Dear god, please let this be over. Please. Please... "How are you feeling? Did you rest?" I asked. Streaks of infra-red, used to pinpoint and target the coordinates of the tumour, shone on her forehead and upper body.
The technician, a kind, gentle man, helped mum up, and gave her a pat on her back. Mum looked tired, so very, very tired. I held her hand and helped her down from the operating table. She wobbled a little and slowly we walked out the room.
"Thank you," I said, following mum. As much as I am thankful to the gentle man for his patience and hard work throughout these last four days of treatment, in a way I do not wish to see him or the CyberKnife, or any other medical equipment, again. An MRI scan was planned for an hour from then.
Mum felt a little better after a little lunch. Just some congee, a few vegetables and vegetarian steak, but at least she held it down in her stomach, which meant she absorbed the nutrients necessary for her to regain her health, regain her strength.
"The [glutamine] really helps," she said, "My throat is not as sore as before."
I joked: "Well you've had lots of experience, and now know what works and what does not. You should write a blog."
Mum smiled.
We again took the taxi to the hospital, and mere minutes after getting off, I could see mum was unwell again. Her mouth puffed, and her lips sealed tightly. I instinctively took out a plastic bag from my backpack and gave it to her quickly. Plastic bags have become a "must-carry" whenever we go anywhere now.
As expected, she vomited. Everything from breakfast came out again. I patted her back. She coughed and choked. I swallowed my tears.I accompanied her inside the operating room, and helped her onto the operating table. She closed her eyes and grimaced in pain. "I know, I know... But this is the last treatment," I said to her, grabbing her hand. The very last treatment I do hope. The very last treatment...
The radiologist kindly asked me to leave the room. I paced around outside, watched the crowd, imagined mum inside. A guy next to me was watching a comedy on his hand-held device, and his laughter filled the corridor. Later, he got up and picked up who I believe is his son. His son who was in a vegetative state. The man gently grabbed his son and placed him in a wheelchair. I watched them disappear into the crowd. The echo of the man's laughter remained in the corridor, remained in my head...
Whirring sounds and a low siren constantly sounded. The technician operating the machine again went in and out of the operating room to adjust mum's position and operating table. Every time he passed me, he would gesture to me to sit and say, "Not yet. It's not finished yet." I would weakly smile at him. I would thank him. Then about forty minutes or so after mum went in, the red light turned off, and the brown door slowly, slowly opened.The technician walked by and smiled at me. "Please, you can go in now..."
I walked inside, and saw the gigantic machine, motionless. With its metallic arm, its impressive-looking head, it stood there, looking proud and imposing. Mum lay there, also motionless. The blue mould that was made of her body the week before made sure that she lies as still as possible. Mum's eyes were closed, and only when I called out "Mama..." did she open her tired eyes. "Is it over?"
"It is over." Dear god, please let this be over. Please. Please... "How are you feeling? Did you rest?" I asked. Streaks of infra-red, used to pinpoint and target the coordinates of the tumour, shone on her forehead and upper body.
The technician, a kind, gentle man, helped mum up, and gave her a pat on her back. Mum looked tired, so very, very tired. I held her hand and helped her down from the operating table. She wobbled a little and slowly we walked out the room.
"Thank you," I said, following mum. As much as I am thankful to the gentle man for his patience and hard work throughout these last four days of treatment, in a way I do not wish to see him or the CyberKnife, or any other medical equipment, again. An MRI scan was planned for an hour from then.
Mum felt a little better after a little lunch. Just some congee, a few vegetables and vegetarian steak, but at least she held it down in her stomach, which meant she absorbed the nutrients necessary for her to regain her health, regain her strength.
"The [glutamine] really helps," she said, "My throat is not as sore as before."
I joked: "Well you've had lots of experience, and now know what works and what does not. You should write a blog."
Mum smiled.
Voices
"I have heart disease, and had a severe stroke some time ago..." I turned around to see where the voice came from. In the main hall of the hospital, there was crowd of people. It could be any one of these people.
"...treatment for stomach ulcer..." In her voice was the sound of sorrow. A man in crutches limped painfully and slowly by, his face grimacing, while dozens of people flowed like a constant stream all around him, all hurrying, all a vision of blur that appeared and disappeared in front of me.
"... my son has cerebral palsy, he depends on me completely..." Another voice, kind-sounding yet forlorn, came from a faceless someone in the crowd. All these voices, all these different voices expressing different degrees of suffering, outing various facets of the fragility of this body of ours that is susceptible to ageing, to falling ill and to slowly, slowly dying. A number of Indonesian carers gathered in one corner and talked among themselves.
"Quick, to the seventh floor! Dad's in a lot of pain!" went the excited voice of a man in Taiwanese. He was surrounded by two little children who had confused looks on their faces.
"The doctor said the tumour has reaches my spine..." Her words were filled with despair, and seemed to be fighting back tears. I turned to see where the voice came from, to perhaps give her a look or smile of encouragement, but she was a face among many.
I paced around the hospital, waiting for mum to come out of the treatment room. I came across the maternity ward. A young mother held her dear baby child in her arms. "You are so beautiful, you are so beautiful..." The mother's voice was full of hope, full of happiness.
All these painful, dehumanising illnesses, and the inevitable fate of slowly, slowly dying. Is it all worth the moment of joy of being born?
"...treatment for stomach ulcer..." In her voice was the sound of sorrow. A man in crutches limped painfully and slowly by, his face grimacing, while dozens of people flowed like a constant stream all around him, all hurrying, all a vision of blur that appeared and disappeared in front of me.
"... my son has cerebral palsy, he depends on me completely..." Another voice, kind-sounding yet forlorn, came from a faceless someone in the crowd. All these voices, all these different voices expressing different degrees of suffering, outing various facets of the fragility of this body of ours that is susceptible to ageing, to falling ill and to slowly, slowly dying. A number of Indonesian carers gathered in one corner and talked among themselves.
"Quick, to the seventh floor! Dad's in a lot of pain!" went the excited voice of a man in Taiwanese. He was surrounded by two little children who had confused looks on their faces.
"The doctor said the tumour has reaches my spine..." Her words were filled with despair, and seemed to be fighting back tears. I turned to see where the voice came from, to perhaps give her a look or smile of encouragement, but she was a face among many.
I paced around the hospital, waiting for mum to come out of the treatment room. I came across the maternity ward. A young mother held her dear baby child in her arms. "You are so beautiful, you are so beautiful..." The mother's voice was full of hope, full of happiness.
All these painful, dehumanising illnesses, and the inevitable fate of slowly, slowly dying. Is it all worth the moment of joy of being born?
Wish
I've had this wish for many years. And for some reason the desire to fulfill this wish is stronger than ever before. Is it this movie I just watched? Or this website I just encountered?
I want to bike around Taiwan.
A distance of around 1000km, which some have done in around 10 days. It seems like a daunting challenge, physical and also mental. And will I be able to do it? I know I do need a challenge now, because the past months, caught between mum's deteriorating condition and the end of the deepest relationship I've ever had, has caused me to become very down and lethargic. I need a challenge to prove to myself that I can achieve something if I set my hear to it. I need a challenge to prove to myself, and partly also to the world, that I can be active, I can be alive.
For a while now, I've felt so useless and rejected, so lost and aimless. Being here with mum, having to tend to her needs and watching her become so weak and so ill, has also drained the life and enthusiasm for life out of me. If I can do this trip, if I can with my own two legs cycle around the island, overcome steep inclines, rough road conditions, fight against the noise and oppression of road traffic, then I have a reason, I have more reason, to believe that I can do anything.
And I need a reason right now, to live, to continue, to hope and to dream...
I really do. Because frankly, I feel as if I am dying, like I am merely surviving from day to day, looking forward to sleep and escape, and not looking forward to waking up or anything that will take much effort. And this is not me. I know this is not who I am, but I have somehow become like this, or allowed myself to become like this... And I need to prove to myself, and to the world, that this lethargic, exhausted and hidden boy is not the real me. The real me needs to break out from the troubles and burdens life has laden on top of me. The real me needs and can break free!
I need a reason to pick myself again, a reason to be proud of myself, a reason to look back and smile about. A reason to prove to myself I can set myself a challenge and accomplish that challenge.
And what beautiful scenery I will see along the way... what sense of joy I will experience from experience true Formosa at its finest and with the power of my own body!
I want to bike around Taiwan.
A distance of around 1000km, which some have done in around 10 days. It seems like a daunting challenge, physical and also mental. And will I be able to do it? I know I do need a challenge now, because the past months, caught between mum's deteriorating condition and the end of the deepest relationship I've ever had, has caused me to become very down and lethargic. I need a challenge to prove to myself that I can achieve something if I set my hear to it. I need a challenge to prove to myself, and partly also to the world, that I can be active, I can be alive.
For a while now, I've felt so useless and rejected, so lost and aimless. Being here with mum, having to tend to her needs and watching her become so weak and so ill, has also drained the life and enthusiasm for life out of me. If I can do this trip, if I can with my own two legs cycle around the island, overcome steep inclines, rough road conditions, fight against the noise and oppression of road traffic, then I have a reason, I have more reason, to believe that I can do anything.
And I need a reason right now, to live, to continue, to hope and to dream...
I really do. Because frankly, I feel as if I am dying, like I am merely surviving from day to day, looking forward to sleep and escape, and not looking forward to waking up or anything that will take much effort. And this is not me. I know this is not who I am, but I have somehow become like this, or allowed myself to become like this... And I need to prove to myself, and to the world, that this lethargic, exhausted and hidden boy is not the real me. The real me needs to break out from the troubles and burdens life has laden on top of me. The real me needs and can break free!
I need a reason to pick myself again, a reason to be proud of myself, a reason to look back and smile about. A reason to prove to myself I can set myself a challenge and accomplish that challenge.
And what beautiful scenery I will see along the way... what sense of joy I will experience from experience true Formosa at its finest and with the power of my own body!
Being love's fool
A beautiful song (below) I heard that is the theme of the new hit movie 愛LOVE.
Catch phrases from the movie:
『你擁有的，都不是你想要的。』
"Everything you own is nothing that you want."
就算睡在身邊，一夜之間也可能變成陌生人...
『就因為我沒那麼偉大，我就不配愛人，就不值得人愛嗎？』
『我真的很害怕失去你，也很害怕失去我的夢想…』
『聽說每一個混蛋的身體裡面，都住著一個受傷的心。』
傻子 Fool
(translation mine)Many peopleare waiting for love, [I] could not predict you can care about me.
Could the time of a lifetime is all used to exchange a misunderstanding withyou?Who canreally give whom happiness till the very end of the story?
Why be so anxious?
Sometimes being wide awake is the beginning of a mistake.I don’tneed [it], and it’s not important either.
How great it is to be a fool!
I don’t understand, and don’t need to understand either,
Let me be like this till old age!Who canreally give whom happiness till the very end of the story?
Why be so anxious?
Sometimes being wide awake is the beginning of a mistake.I don’tneed [it], and it’s not important either.
How great it is to be a fool!
I don’t understand, and don’t need to understand either,
Let me be like this is already good enough!Nothing really matters,
Only need to give you a soft, soft hug.
Even if nothing is left behind, it does not matter.
Even if something is left behind, that will be so precious, precious, precious!
How great it is to be a fool!
I don’t understand, and don’t need to understand either,
Let me be like this till old age!
Be likethis till old age…
Catch phrases from the movie:
『你擁有的，都不是你想要的。』
"Everything you own is nothing that you want."
就算睡在身邊，一夜之間也可能變成陌生人...
(Even sleeping next to somebody, within one night you could become a stranger...)
『就因為我沒那麼偉大，我就不配愛人，就不值得人愛嗎？』
"Just because I'm not so great, [does that mean] I am not suited to love, not worth someone to love?"
『我真的很害怕失去你，也很害怕失去我的夢想…』
"I'm really afraid of losing you, also afraid of losing my dream..."
『聽說每一個混蛋的身體裡面，都住著一個受傷的心。』
"[I] hear in the body of every arsehole there lives a hurt heart."
13 February 2012
Valentines Day
She threw up again just before entering the cyberknife operating room. What little she ate, a bowl of congee, nuts and a slice or two of mandarin, poured out of her mouth in the hall of the hospital. I patted her back, but looked away for fear of getting sick myself, and handed her a bag and water to swish her mouth. I held her hand in an attempt to calm her, reassure her.Almost an hour since she went in for treatment. Again, the technician went in and out to adjust her body and posture for the machine to operate. On the counter of the registration desk of the oncology ward was a beautiful, beautiful bouquet of roses, with two little Teddy bears on top. How lucky that girl/ boy is to get such beautiful flowers and expression of love on this special day.
--
Mum came out over an hour later. A few steps later she threw up again. And again.
Forever love
Some time ago, soon after I returned here, my cousin gave me a nice card. A love card, with a beautiful message, a message that describes my feelings for someone should I fall for someone. Only once has that ever really happened.
"Why?" I asked my cousin when she gave me the card, especially as I have no one to give this card to.
"Keep it for that one day when you do have someone!" she said. So I put the card away, wondering when I will be able to use it.
It's Valentine's Day. The shops have been filling with heart-shaped products which makes me tend to look away whenever I see them. I even got a free ticket to go see a movie about love (titled: 愛Love，literally, "Love Love"). Not sure if I'll even go see it. Just another day, filled with hospital appointments and the difficulty of seeing mum so weak and tired... How different it feels like compared to a year ago, when I had my first "real" Valentine's Day.
But one day that beautiful day will come when I can give the card to the one I love, truly, madly, and deeply.
永遠的飛
Her lawyer came on tv and announced the news. A Taiwanese diva, immensely popular with people of my parents' generation, passed was put to rest yesterday. It was a shock to this nation, for her songs and moving voice was one which could instantly capture people's hearts, longings and sense of nostalgia.
Fong Fei-Fei was born in a humble environment in the Taiwanese countryside, and went to sing at a young age in order to help her family financiallu, as many stars those days did. Her singing in Taiwanese is reminds one of the voice of a mother whose care and love knows no bounds. Her songs in Mandarin carry a Taiwanese accent that is endearing, even to Chinese-speaking communities around the world.
Even more shocking is that she passed away on 3 January, over a month ago. She requested that her passing be kept secret and that her funeral arrangements be kept low-key. The lawyer explained that she did not want to trouble people and make her fans sad especially with the run-up to the lunar new year. Till the very end, she thanked her fans and cared about them, and did not want to sadden them with news of her passing during a most festive season...
As a child, a tape with Fong Fei-Fei's (鳳飛飛) songs would be played over and over again on the car cassette deck (remember, this was back in the eighties...). I didn't really understand the words back then, and even less the sentiments about love and loss. Even so, I knew somehow that she was special, for dad at times would hum happily to the tunes. I would often ask mum and dad to explain certain Taiwanese words that I did not understand. In short, her voice accompanied me throughout my childhood, her songs was the background music to many family outings in the car.
She died of lung cancer. Metastasis to the spine. She was sixty years old. Like mum.
The diva may have left this world, but the first song that made her so popular and famous still has a special place in many people's hearts...
祝你幸福 Wish you happiness
Fong Fei-Fei(Translation mine)[I] Give you a gift of love, I wish you happiness.
No matter when, or where you are,
Do not forget my well-wish.
The journey of life contains sweetness and bitterness,
[you] must have strong will,
Develop your wisdom, leave behind your beads of sweat,
Create your happiness.
心肝寶貝 Baby sweetheart
(translation mine)
Softly, softly, listening to the sound of breathing,my dear baby child.
You are my happiness, hope, full heartedly I raise you up,
Hoping you are bright, hoping you are knowledgeable, hoping you will grow upsoon.
Hoping you are cute, healthy and lively,
Unafraid of the cold of the wind.
You are my happiness, hope, full heartedly I raise you up,
Hoping you are bright, hoping you are knowledgeable, hoping you will grow upsoon.
Hoping you are cute, healthy and lively,
Unafraid of the cold of the wind.
Unwell
Such a terrible headache since I woke up this morning. It feels like something is pounding against my forehead, and the back of my head. The pain at times is so intense I feel faint and very dizzy, as if I'm about to collapse at any moment. Being in the hospital till the late afternoon, just sitting around and waiting didn't help. At one point, my legs and hands were trembling slightly uncontrollably for no particular reason...
Mum too felt particularly unwell and extremely tired after her treatment today. And the two of us, both so unwell, somehow managed to make the long journey home on the metro. A long nap helped, but still the tiredness, especially mum's is difficult to shake away...
Mum too felt particularly unwell and extremely tired after her treatment today. And the two of us, both so unwell, somehow managed to make the long journey home on the metro. A long nap helped, but still the tiredness, especially mum's is difficult to shake away...
12 February 2012
Treatment Day Two
The siren constantly hummed, a low and annoying echo. The radiologists went in and out of the room in a hurry, numerous times, as if something seems to be going wrong.From a distance, I watched her lie in that room, mere metres away from me. Motionless, under a green hospital-issue blanket, I somehow cannot shake away the image of corpse lying in the morgue.
Mum was in the "operation room" for over an hour and a half. The technician explained later because of the metallic artificial spinal column installed after the surgery, the computer automatically shut down many times for fear of hitting the artificial spine. The gamma ray will deflect if it hits metallic objects, and the computer, with help of X-rays and infra-red scanners, is smart enough to detect if there are obstructions in the way of the targeted area. So the technician had to go in various times to adjust mum's position and the operation table to ensure as accurate a procedure as possible.
Mum looked visibly weak after she came out. She had to lie there in a mould that was made of her body earlier and keep perfectly still while the machine twists and turns above her head, while red beams scan the length of her body to continually calibrate the target coordinates.
But the day at the hospital was not over yet, for had another appointment with a new doctor to see if is anything wrong with her bowels. And immediately after that and X-Ray was taken.
By the time we got home it was already past three in the afternoon...
A quiet moment
A quiet day today. In the morning we went to the sports park for a breath of fresh air, for the weather was unusually clear and bright for this city at this time of the year. That clear spell lasted only an hour or so, then it became gloomy and grey again.
Mum kept on insisting that we go out for a big meal to celebrate, but I didn't want to. The last time we went for a meal, we had to pack everything up half-way through the meal because mum was gagging and about to vomit. While fixing dinner, mum said I should eat long noodles, like I did last year, for the longer the noodles, the longer your life is said will be.
"I don't want a long life," I said, "Just a happy one". What's the point of a long life if you're miserable and suffering, whether physical pain or emotional torment? All I could hope for is a happy life, filled with love and care and kindness. Of course that all depends how I live my life, and how I choose to perceive life. Maybe a nice warm home, and a devoted, loving, caring person to go back home to every day. But that is perhaps asking too much. Just a happy life is enough.
I went to the bookstore after dinner to pick up new books to read. Reading is perhaps the one thing I can really concentrate on doing here, the one thing I can do relatively well amid the turbulent and upsetting circumstances surrounding mum's health condition nowadays. While browsing, I spotted a book that might prove useful for a personal challenge that I'm planning in the coming period-- if mum's condition permits me to go ahead.
When I got home, mum was getting ready for bed. On the nurse's recommendation, I warmed up some heat packs and placed them on her bed, for they are supposed to aid sleep. I lay down next to her, and she stroked my head a bit. Mum's hair has greyed plenty since the surgery. Her hands have somehow become very wrinkled and dry, her fingers trembling slightly. The coarseness of mum's voice still reminds me much of an old witch...
She began telling me about a conversation she had with my brother earlier. "It's good to see him happily married, and to have a new family to care for him." I had an idea where this was going. And I was right.
"I only wish you had someone too," she said quietly, straining a little as her voice is still very coarse and fragile, "When I am gone, I hope you will have a new mum and dad to care for you..." I closed my eyes, and imagined what they would look like... "They would be lucky to have a son like you..." I closed my eyes also to stop the tears from escaping.
Mum continued. "I am so fortunate. The surgery saved me in time, or otherwise I would have become paralysed for life. That is perhaps worse than death..." She recounted how waking up for the first time after the anesthetic wore off on 28 December she was so relieved she could feel and move her legs and arms. "It was like I was born again..." I was not there to witness that, to see the expression on her face when she came to and realised that she can move her body at will. I only managed to arrive a couple of hours later.
I lay next to mum and buried my head face down on a pillow. I said nothing as she continued. "If I think about it, I have no regrets..." It was not the first time mum said this, but it was the first time after her major surgery. The first time after many references to wanting to end her life because the soreness and pains after the surgery is tormenting her body and mind, and keeping her awake at night. "Dad was so thrift and hard on himself, and he left me with money for treatment," she said, sniffing, "And I am so lucky to have a son who cares so much." I closed my eyes even tighter. "Which boy would rush home and take care of his mother like you do?"
"I just want you to be well," I managed to say, "As the doctor said, it's the quality of life that matters..." Yes, why would you want to live on and on and live a life full of regrets, full of waking fears and dormant feelings of guilt and "what ifs", full of physical pain and discomfort? And like that couple in the movie we watched earlier together, when there is limited time and space to live, live and do pursuing a dream, living a dream. All the rest matters so very little. So very, very little.
I do not know how long mum will be around... I cannot guarantee that I can have success in my career or have the wonderful partner and caring in-laws that she would like me to have when she is no longer around. But here and now, I can try, and try, and try again to do everything I can to make her feel comfortable, to make her feel loved. There is nothing else I would do less, there is nothing more I could do less than be by her side as long as I can as she takes this slow, slow journey to recover her strength and 'old' self. Perhaps she may never recover, never be her old self, the strong, brave woman, mother and wife I now she once was. But in my mind, she will always be my dear, brave mother.
My dear, brave mother who gave birth to me twenty eight years ago.
Mum kept on insisting that we go out for a big meal to celebrate, but I didn't want to. The last time we went for a meal, we had to pack everything up half-way through the meal because mum was gagging and about to vomit. While fixing dinner, mum said I should eat long noodles, like I did last year, for the longer the noodles, the longer your life is said will be.
"I don't want a long life," I said, "Just a happy one". What's the point of a long life if you're miserable and suffering, whether physical pain or emotional torment? All I could hope for is a happy life, filled with love and care and kindness. Of course that all depends how I live my life, and how I choose to perceive life. Maybe a nice warm home, and a devoted, loving, caring person to go back home to every day. But that is perhaps asking too much. Just a happy life is enough.
I went to the bookstore after dinner to pick up new books to read. Reading is perhaps the one thing I can really concentrate on doing here, the one thing I can do relatively well amid the turbulent and upsetting circumstances surrounding mum's health condition nowadays. While browsing, I spotted a book that might prove useful for a personal challenge that I'm planning in the coming period-- if mum's condition permits me to go ahead.
When I got home, mum was getting ready for bed. On the nurse's recommendation, I warmed up some heat packs and placed them on her bed, for they are supposed to aid sleep. I lay down next to her, and she stroked my head a bit. Mum's hair has greyed plenty since the surgery. Her hands have somehow become very wrinkled and dry, her fingers trembling slightly. The coarseness of mum's voice still reminds me much of an old witch...
She began telling me about a conversation she had with my brother earlier. "It's good to see him happily married, and to have a new family to care for him." I had an idea where this was going. And I was right.
"I only wish you had someone too," she said quietly, straining a little as her voice is still very coarse and fragile, "When I am gone, I hope you will have a new mum and dad to care for you..." I closed my eyes, and imagined what they would look like... "They would be lucky to have a son like you..." I closed my eyes also to stop the tears from escaping.
Mum continued. "I am so fortunate. The surgery saved me in time, or otherwise I would have become paralysed for life. That is perhaps worse than death..." She recounted how waking up for the first time after the anesthetic wore off on 28 December she was so relieved she could feel and move her legs and arms. "It was like I was born again..." I was not there to witness that, to see the expression on her face when she came to and realised that she can move her body at will. I only managed to arrive a couple of hours later.
I lay next to mum and buried my head face down on a pillow. I said nothing as she continued. "If I think about it, I have no regrets..." It was not the first time mum said this, but it was the first time after her major surgery. The first time after many references to wanting to end her life because the soreness and pains after the surgery is tormenting her body and mind, and keeping her awake at night. "Dad was so thrift and hard on himself, and he left me with money for treatment," she said, sniffing, "And I am so lucky to have a son who cares so much." I closed my eyes even tighter. "Which boy would rush home and take care of his mother like you do?"
"I just want you to be well," I managed to say, "As the doctor said, it's the quality of life that matters..." Yes, why would you want to live on and on and live a life full of regrets, full of waking fears and dormant feelings of guilt and "what ifs", full of physical pain and discomfort? And like that couple in the movie we watched earlier together, when there is limited time and space to live, live and do pursuing a dream, living a dream. All the rest matters so very little. So very, very little.
I do not know how long mum will be around... I cannot guarantee that I can have success in my career or have the wonderful partner and caring in-laws that she would like me to have when she is no longer around. But here and now, I can try, and try, and try again to do everything I can to make her feel comfortable, to make her feel loved. There is nothing else I would do less, there is nothing more I could do less than be by her side as long as I can as she takes this slow, slow journey to recover her strength and 'old' self. Perhaps she may never recover, never be her old self, the strong, brave woman, mother and wife I now she once was. But in my mind, she will always be my dear, brave mother.
My dear, brave mother who gave birth to me twenty eight years ago.
Leaving greacefully...
“There is
no medicine. All you can give is the love of family, love plus care.”
I bought the movie Leaving Gracefully (帶一片風景走) some weeks back, hoping that we would have the time to sit down and watch it together as a family. I knew the theme would have a lot of meaning for my family, but in the evenings mum has either been too tired or too ill, so we never got around to it.
I bought the movie Leaving Gracefully (帶一片風景走) some weeks back, hoping that we would have the time to sit down and watch it together as a family. I knew the theme would have a lot of meaning for my family, but in the evenings mum has either been too tired or too ill, so we never got around to it.
Only today,
on my birthday, or because of my birthday, did mum and I manage to watch it. Half way through, brother
called from the other side of the world to say he arrived home safely. Tears I shed
were just drying when he called.
The movie
is based on a true story. In 2008, a
husband and his wheelchair-bound wife, who is diagnosed with spinocerebellar
atrophy, spent 84 days and walked over a million steps to circumnavigate the
island of Taiwan (a distance of around 1000km). The working class couple
touched many hearts as they walked around the island, and the media dubbed it “Love
of a Million Steps”. How far would a husband go to share how much he cares and
loves his wife? What would you do with your life when there is limited time and
space? As the wife slowly loses her motor skills and ability to speak, the
husband decides to fulfil a promise he once made to her. He wants to take her
oyster hunting at low tide, he wants to take her on their first honeymoon, for
they never had one; he wants to take her on a final journey, and defy what the
doctor said about it being impossible.
And they
did manage to do it, in a revamped wheelchair, with a flimsy shopping cart trailing behind, and with the husband pushing all the way. One step at a time, slowly,
in sunshine or in rain. Passerbys offered them encouragement and support, some
gave them shelter and food, some even offered them rides. But the husband
refused, for he said he wanted, needed to walk this final journey with his wife. Just the two of them...
“Even though we cannot walk hand in hand, our shadows on the ground are together…”
“Even though we cannot walk hand in hand, our shadows on the ground are together…”
I shed
tears quietly at many moving moments, and quietly wiped away the tears. At one point, the wife insisted to return home
after already walking for over a hundred kilometres, in order to sing happy
birthday to their daughter. That scene was perhaps even more touching as today was my birthday. The lady, though she has almost lost the ability to speak, tried hard to sing "Happy Birthday" to her daughter. The daughter, obviously moved, ran to hug her mother, and together they cried... Another touching scene was when while going up a steep hill the husband fell, but the first thing he does is ask whether his wife is alright and tends to her needs… Such is their love, the husband's deep commitment to the care and comfort of the wife till the very last moment of her life. How beautiful that is, that love, that affection, which is unconditional and resolute, which transcends the purely physical. "I will grow ugly..." the wife, knowing how the disease will affect her looks and make her eyes bulge and her arms shrivel, said to the husband at one point, to which he replies "And I will grow old..." He loves her not for how she looks, but for the person whom she is, until the very, very end. Their marriage vows were truly forever.
The doctor who initially diagnosed the wife became deeply touched and inspired. Though there is no cure, he realises, of all the patients he has seen before, this couple defied his opinion of what a person with a degenerative brain disorder can achieve. Whereas everyone will gradually disintegrate and die in the end, the couple showed their determination to decide life for themselves, and how “Just being happy is good enough…”
The doctor who initially diagnosed the wife became deeply touched and inspired. Though there is no cure, he realises, of all the patients he has seen before, this couple defied his opinion of what a person with a degenerative brain disorder can achieve. Whereas everyone will gradually disintegrate and die in the end, the couple showed their determination to decide life for themselves, and how “Just being happy is good enough…”
It is not
without reason why I wanted to watch this movie, especially watch it with mum. It
is my hope the movie will fill mum with hope. Perhaps, seeing that husband and
wife, she will be inspired and tell herself: “If they can do it, if a person
who is wheelchair-bound and has lost all control over her body can, then I too
can live and be happy…”
(translation
mine)
Can the
soft, soft wind hear? Hear me quietly describe the past?
Don’t let that past vanish. Your little smile was so beautiful.
The waves made up your face, the sky was full of rosy clouds.
The spray of the waves is emotionally attached to the blue, blue sky. The tides never forget the vows of love.
Tightly, tightly [I] hold your little hand, [and] remember to take love away.
Longing is like the tides and is not dispelled, [it] is before one’s eyes.
[I] cannot differentiate whether it is the rain or tears,
Please, moon, [I] hope she can accompany you,
And fly away with a little smile…
Don’t let that past vanish. Your little smile was so beautiful.
The waves made up your face, the sky was full of rosy clouds.
The spray of the waves is emotionally attached to the blue, blue sky. The tides never forget the vows of love.
Tightly, tightly [I] hold your little hand, [and] remember to take love away.
Longing is like the tides and is not dispelled, [it] is before one’s eyes.
[I] cannot differentiate whether it is the rain or tears,
Please, moon, [I] hope she can accompany you,
And fly away with a little smile…
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