Follow up

doctor's drawing

We arrived pretty early at the hospital, and the waiting area was almost empty. Saturday morning, and as there were not many people around, the doctor was absent temporarily for a routine check on his patients at the hospital.

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

The lower spine section is more or less treated and should be in control. But the problem is the area near source of the great big lump that was removed. Another reason for the prolonged treatment was because the doctor wanted to make sure all the bits of the tumour that were unable to be removed completely can be radiated to prevent the risk of them coming back again.

"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 think it's best to treat that soon, and I'm planning how to do this with the least possible damage," the doctor said. C2 is very high up, and the throat and spinal tissues around there are more sensitive than others. "I will let my assistant call you if need be. It should only be a day or so."

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.

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.

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…

Follow up

Another suspected spread, another treatment due...

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...

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.

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.

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...?

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.

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...

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.

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.

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.

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?

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!

Being love's fool

A beautiful song (below) I heard that is the theme of the new hit movie 愛LOVE.

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."

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.

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...

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.

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.

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…”
 

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…” 

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…

Night out

Just sent out with some friends, two of whom are people I met during my studies. I've not seen for a long while. Walked around the night market a bit, had some food and drinks together.

And yet, deep down I feel so detached and distant from everything, from everyone... At one point I was so lost in thought, not really thinking of anything, just lost, my friend waved her hand in front of me before I got back to reality. I found myself just laughing when people were laughing, smiling or pretending to be, because it seemed the right and polite thing to do...

Have I lost the ability to have fun? It was one of two nights I had out since my return (the first was just after new year, with my cousin, who one night craved a hot snacks at close to eleven at night....). I should have just let myself go an enjoyed myself fully. And yet I was so mentally tired and physically longing to be in bed... Mum's condition has really dragged me into a whole new low.

What is wrong with me...?

Happy birthday to me

It's my birthday today, at least the one that matters most to my parents. I only have one wish... May all beings be happy and free from pain... Especially my dear, brave mum.




Singer: Wen Lan
Tune: Jay Chou

(translation mine)

I know sadness cannot change anything,
Then let me a little more honest.
Honest, inevitably there are venting that cannot be controlled,
All that can be done is close the door and ignore everyone.

Sitting alone in an empty [KTV] room,
Let the mobile phone rest for a night.
Difficult, [I] want to cut off the song, cut away the images of memories,
Tears cannot flow past midnight.

Happy birthday, I say to myself.
The candle has been lit, loneliness has shone.
Happy birthday, tears have melted too.
I want to thank you for everything you have given, you have taken away.

[I] still love you, with a bit of hate,
[I] still need time in order to balance [it all].
Passionate love, a scarring wound, [must] extinguish everything in order to be reborn.
Happy birthday to me.

Diagnosis...

Mum described how she's losing the movement of her fingers, losing the ability to write, the ability to even eat with chopsticks.  I've noticed in the last couple of days how her fingers tremble. How is this possible after the major surgery?

"We need to do another MRI..." The doctor said. As soon as possible. The urgency scared me, and my heart sank.

The doctor could not immediately diagnose what seems to be the problem, but he did mention that it's related to the spinal area that is due to be treated in two days. Could it be that in the three week delay in treating that particular section, the tumour has eaten away more of her bones, eaten into more of mum's nerves? I was dizzy with the thought, shaking and frightened inside just from the possibility.

The consultation was with the new neurosurgeon at the new hospital that she needs to go to for her Cyberknife treatment. As the doctor gives mum lots of confidence and is very approachable, mum took the chance to ask more questions about her condition this morning.  Mum  mentioned to the doctor her inability to sleep these days, and was prescribed some sleeping "aids". The doctor made a distinction between sleeping pills and "aids", which made me wonder whether it was merely a euphemism to mean the same thing. Somehow, perhaps being at the hospital so much and so often, has made me a skeptic... In the end, it's all chemicals, all of it. It's all artificially made and contain steroids that in large quantities  will accumulate in the body and slowly poison you, destroy your liver functions and overburden your kidneys. Mum already is showing signs of swelling in her feet, and her fingers. That's why mum sometimes refuses to take her pills as prescribed, that's why there are bottles and bottles of pills sitting on her shelf still unopened.

"What about throwing up? I've been throwing up for over a week now. Nothing stays in the stomach..." And it shows in how her cheek bones have sunk a bit, and in how mum's weight has dropped even further. What is worrying is that for the new cyberknife treatment, mum needs to take medicine intended to protect her throat and nervous system from radiation damage. Because she's throwing up almost after every meal, it also means the medicine she takes is washing out with everything else. "I'll make an appointment with another doctor, a specialist in digestion, and he will be able to address your concerns..."

Scans, and more appointments planned. Another long, long week ahead.

Departure

What I once called the European Support Team (my brother, sister-in-law and nephew) just left... The taxi came to pick them up and take them to the airport at 5.30. brother will head back to Europe first, while his wife and kid will stay behind a bit longer, and leave most likely at the end of March.

The house is emptier now, quieter. Just mum and I left now. Brother gave me a hug before he left. "Thank you for everything all these months..." It was the first time he really acknowledged what I do here."Think about whether you want to come back here and work a bit..." I didn't say anything. I've been thinking about it too much.

The five week stay has come to an end. So quickly, it seems. I still remember that first night when brother arrived straight from the airport to visit mum at the hospital. She was steadily recovering then, and somehow her condition has gotten much worse, not better now that she's back home. I still remember the moment when mum met her grandchild for the first time... Mum played with him so often it has become part of her routine when she gets up in the morning. She'll sure miss him, for he was her source of inspiration, her sole source of hope and laughter, and of life. I miss already, despite how noisy and unruly he can be at night.

Brother was not always around, but he did what he could with the time he had. Of course, I could always lament him for not doing enough, for not being caring enough, but he is the way he is, and I am sure he is doing what he can. He has a different life from that of mine, different obligations and burdens. He has a family, a wife and child, who depends on him. All I have is a cat, and no one else who really matters or depends on me. At least not any more. I thanked him, as I did before, for bringing my nephew home, for making mum so proud and for giving her so many reasons to smile about. From the long hug he and mum shared just prior to walking out the door, I could see he cares deeply too. How could he not? He is her son too, and she is his mother. We all have different roles to play, and different responsibilities to share.

"I'll have to ask you to cover the costs for going to Canada," brother did not forget to say to me before he left. If all works according to plan, if mum's health is stable enough, and if she manages to recover her strength, the next time this family is reunited may very well be in Canada, in a few months' time. That's a lot of "ifs", but one must be optimistic, be hopeful, and to dream of that moment when all of us are gathered in my little apartment. How beautiful that moment would be... How I long for that day, one day...

I of course will do everything in my power to make sure that happens. This family has gone through so much over the past three, four years, and if there were one immediate wish, it is to come together in Canada. That is my wish as much as mum's, I'm sure. And the planned graduation ceremony in June will be the perfect occasion to bring us all together, to travel together.

Brother left, and the apartment is a little quiter, a little emptier now. Mum went back to sleep, and from her snoring I could tell she's finally managed to doze off, which is a relief after so many, many sleepless nights.

I am on my own now...

Treatment Day One

Another cold, cold rainy day in Taipei. Together we rode the taxi to the hospital in the south of the city. The meter clocked over sixteen kilometers, and we were still within the city boundaries. We were a little late when we arrived, but the radiation technician kindly smiled and told us not to hurry.
 

The noise of a siren behind the closed thick metallic door warns people not to get close. Radiation in progress, treatment in progress.

The tumour, as suspected, is indeed difficult to locate and treat. From the initial diagnosis of two days of treatment three weeks ago, it's now doubled to four. Which means, except for Sunday, we will have to be at the hospital almost every day this week.

At the end of the robotic arm is a giant pod-like structure, to which a highly focused laser lens is attached at the end. It is through this that the burst of radiation is emitted at key locations to kill off the tumour. The robotic arm moves around the patient, and with the aid of x-rays and infra-red scans which are constantly calculated to ensure the laser is targeted at the precise location of the tumour as previously determined by various scans that were conducted prior to the treatment.



I watched from a work station outside the operation room. On a screen, I could see four cameras displaying the room from various angles, each with mum's body on the "operating table" in view. The robotic arm moved around mum, slowly, and every few minutes or so a red light would come on indicating "BEAM ON", followed by a green light indicating "BEAM OFF". A myriad of numbers would flash across one of the screens, which I presume is the computer calibrating the location of the tumour to be targeted. Earlier, the technician explained that the device is actually derived from the automated assembly line of automobiles, which requires very precise instruments to ensure the metallic parts of a car are well welded together. In this case, the robotic arm ensures that the undesirable parts of the body, the tumour thus, can be 'zapped' away using intense bursts of gamma radiation. The technology uses 6-D (as opposed to the convention 3-D) imagining, so that the computer can 'see' from all possible conceivable angles and send the robotic arm to within an millimeters of the intended location.


He led us into the chamber, and upon turning a corner I saw the massive device which to this moment I had only seen in pictures and simulations. It was more futuristic than I imagined it, a gigantic robotic arm with a laser attached to the end of the arm. There were  with the capability of turning at any angle.

I watched the four little screens carefully. Other than the robotic arm moving in very close to mum's body, there was nothing happening. "Does it hurt?

"No, not a bit. She doesn't feel a thing," the technician explained, "Most patients get very bored and fall asleep." If the patient's body and target area is aligned well with the scanned image stored in the computer (to ensure accuracy in the laser targeting during the treatment), then the procedure should not take more than an hour, or an hour and a half at the most.

I sat outside the 'operating room' next to brother and waited. He took out his phone and began playing a game, while I got up and paced around a bit, occasionally peering my behind the technician to look a the various displays of the operating room and of mum's high-precision scan. It sounded and looked like something out of some sci-fi series, but it was very real, and it could very well be a life safer...

There was a moment, I felt like crying... At one point the technician sympathetically said: "I can understand your anxiety. My dad also had cancer. Hang on there..."
So much waiting, and the treatment has finally begun. How effective will it really be? Will it really clear away all traces of tumour in mum's spine? The doctor explained that scans the day before revealed two concentrations of cancerous cells, one in the lower spine, somewhere behind the intestines, and another higher up, somewhere behind the lungs and immediately below where an artificial spinal column was installed after the surgery. Other than that, there are no other traces, as far as they can tell, or at least, as far as the instruments can determine. However advanced and high-tech the technology is, there are limitations, for it cannot detect cancerous cells smaller than 1.25mm. If there are other traces, then further follow-up scans will reveal them...

Mum left the operating room within forty minutes, a speed which surprised both my brother and I that made us wonder whether something went wrong. We went inside the 'operating room' to greet mum, who lay on the 'operating table' and smiled at us as we entered. "Did you bring [my grandson]?" she asked, "I heard a baby crying outsie!" It was actually another baby in the corridor, perhaps not much older than my nephew. But I could tell, mum wanted to see her grandson, and I can only imagine it's because he brings her so much joy.

I looked at the CyberKnife machine from close up. Quietly I thanked it, even though we do not yet know how effective it is. It seemed silly, was it not, to thank a cold inanimate machine. But as I left the room, I imagined the dozens, hundreds of people who have laid there on the same 'operating table' and who have looked at as the machine quietly slid over their bodies and one by one killed off unwanted tumours. And now my own mother is one of these people, whose health and life depends on such a sophisticated piece of technology, who hope depends on the technicians and doctors who operate the machine from the room next door...

Treatment one ended. Three more to go.

"It's hard"

Mum and I have not been to that store for  a while, and the store owner was very happy to see us again. Of course, she was surprised to see mum walking so slowly and with great effort, and wearing a neck brace. Mum, with her coarse voice, explained what happened and how she underwent surgery.

After we bought some things and before walking away, the storelady came up to me and gently patted me on the arm. I could have so easily cried hearing what she whispered to me...

"How hard it must be on you... Hang on there. You are a good son."

A last stand

Another cold, cold rainy day, an

Coping...

How has my life benefitted the world in any way today? What did I do that is worthy of mentioning? Cleaning up the apartment? Making mum feel comfortable and cared for? Slicing fruits and reminding mum to take her medical supplements? What did I really do to make me feel at the end of the day, before sleeping: "I have done an honest day's work and can feel so proud of myself?"

I cannot describe how very useless I feel nowadays... How useless and lonely I feel every day. But
I can't complain, especially not to mum. She is sad and already very moody at times because of her long sleepless nights and almost constant pain and bodily discomfort... How could i possibly complain to her about my frustrations and not make her again feel like she is burdening my life?

I wake up, think of what to eat for breakfast, then lunch time swings around, and soon after it's dinner and bed time. Day and night have lost their meaning, work day and weekend have blurred into all the same... I am not lamenting my lot, for mum simply cannot be left alone for long...

But I too want to work, wake up and be part of something, I too want to make a living, relax after a long week of work... I too want to have a close somebody I could turn to and talk about things, or even cry in front of at times. Here I am with mum physically and almost constantly and yet am so very lonely. I can't blame her, for since she lost her voice she doesn't want to talk much any more. And she is often so weak she just sits there or lies there, looking into space. When I talk to her or ask her something, she doesn't respond much. It has come to this...

I don't want to be someone who complains all the time (and this blog for the past few months, weeks has become that: a list of complaints and rants...), for my Worries and sorrows are nothing compared to my mum's constant struggle for life and to stay positive...
But really, I have never known a time in my life when I am so physically and emotionally drained and empty. It's like I have lost the ability to hope, to dream and to tell myself things will be ok soon. It's as if I have lost the ability to know what the purpose of my life and of breathing is. It's like nothing has any meaning, nothing is of any value any more. And to feel this world almost every waking moment is a terrible, terrible torture for my mind and spirit...

I cannot describe how being here, being in this very apartment and having to share the little space, having to sleep on the floor all the time, is testing my patience... I need challenges, I need someone or something who can stimulate me intellectually. And right here, I don't feel anything.

Another early night, another night of listening to mum cough and groan, and twist and turn in bed... What will come of tomorrow...?

What do you want me to do?

"What do you want me to do? I can't do anything."

I just wanted to talk, just hoped I could talk to someone who  could listen to me. Never once has my brother asked me how I'm coping, whether I need some support or comforting. Never did he ask about those first few days and weeks at the hospital, how terribly tiring and draining it was, or whether I needed help taking care of mum. It's as if it's my job, my sole duty, as if I don't have a life,  as if I don't have dreams and wishes I would like to fulfill.

Did I not have plans to start working and start preparing for my exams? Do I not long for some semblance of stability and calm in my life, something I've so craved for for four long years (or longer)? His response to my attempt to talk about mum's worsening health condition sounded like I'm causing him trouble.  "What do you want me to say? There nothing I can do." He was using his computer as he said that.

By this time next week, he will be long gone. And I will be here all alone to face all this, to shoulder the responsibility for mum's life and health. Will he see her again after he boards that plane in few days? Who will clean up the mess every-time mum throws up? Who will do the cooking and try to make sure she does not lose several kilograms again? Who will hold her hand, touch her shoulder and look her in the eye and tell her not to be afraid...?

I know my brother cannot do anything. I can imagine he is hemmed in and has a family to provide for, and that he has his own worries and needs to take care of. He has a family, a wife and a child, a mortgage and is  financially tied down.  But just a kind word, just something along the lines of "I appreciate what you're doing.." or "Hang on there..." is enough. But maybe it's too much too ask for.

"Mum is very, very lonely. And she's very depressed. She's often told me she wants to give it all up. That's why I ask you to contact her as often as possible..." I barely reminded my brother our mum doesn't have much time left... Somethings are known, and need not be said. And he knows it. My brother told me how very busy he is at work and cannot call. I do not doubt he is busy. But... "Not even five minutes of your break to call?" Then he said using skype via 3G has connection issues and bad reception. But I often call using 3G Internet, and it seems to work well...

He looked irritated at what I was saying. Perhaps deep down, he is feeling remorse and regret already that he's not done so much for mum... Perhaps he wishes deep down he could do much more and fulfill his duties as a filial and caring son... But I cannot know what he thinking. Perhaps the calm and nonchalance are but a facade masking his real pain and real feelings. 

I went to bed already... In my mind again is the sense of disbelieve and frustration, the latter accentuated by my own brother's complacency to it all... Perhaps it is his way of coping, of shielding himself away from harm an unhappiness and shielding himself from remorse... But I just wish one day he will wake up and realise it's not too late, and to be more  flexible and accepting if change and circumstances...

But brother is the  way he is...