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.
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.
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.
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.
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...
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."
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...?
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...
