Brother and I gathered before mum's altar with her two very close old colleagues. The two aunties worked with mum for over ten years, and their children went to English lessons with mum brother. They have helped mum so much over the years, and were also witnesses when mum made changes to her will at the beginning of June. Even now, even after mum has passed away, they kept on telling us if there is anything we need help with, we can call them.
Brother and I agreed to tell the aunties about one of mum's life wish when they came to see mum at home (it's customary for family and friends to pay respects at the home of the deceased). Sometime ago, she said she is very grateful for their friendship, and would like me to arrange a trip to Europe for both aunties. "The best time is in Spring. April and May, when the flowers are blooming," she said. Mum may not be able to see the flowers bloom in person again, but she would like her closest friends to go and see it themselves.
Both aunties began crying. Brother's voice wavered as he explained that it is mum's wish, and asked them accept. I too began to tear a little (even now, thinking back to that moment is very emotional...). "This is your mother... always thinking of others..." one auntie said trying hard not to choke on her words.
They aunties resisted at first, but eventually said we can talk about it later. Just as they were about to leave, they stood before mum's altar and prayed. Again, their eyes were moist, for a dear friend has already departed, and yet this friend is still thinking of them, wishing them happiness from the world beyond.
Showing posts with label life wish. Show all posts
Showing posts with label life wish. Show all posts
01 July 2012
16 February 2012
Concern
"I'm worried that you might be 'cheated' on" (被人騙), mum said, in response to how I was talking excitedly about my plan to cycle around the island. Alone. It was a little after half past nine, but she was already in bed. The entire day, she has been so weak, so tired. And the severity of the numbness of her right hand has worsened. Even using a fork to pick food up is a struggle. Even using the spatula to stir vegetables in the wok is a challenge.
" 'Cheated' on? By whom? Please explain!" I said. In Taiwanese, a language spoken by a people who love euphemisms ambiguities, to be "cheated on" generally means someone taking advantage of you. In a variety of ways... gauging you with exuberant prices, exploiting you sexually, perhaps leading you astray and taking you to "improper" places. I really had no idea what mum meant.
"I'm just worried about you being on your own..."
"Worried! I've lived in London, not exactly the safest city in the world. I live in Montreal, where there are gangs and shootings and plentiful of drugs. I grew up alone in the Netherlands! Why were you not worried about me then, but worried about me in Taiwan?" I know a mother is always concerned. But in Taiwan there is a paranoia that danger is everywhere. I blame it solely on the news media and sensationalist newspapers that thrive on reporting on crime, suicides, kidnappings, fires, accidents and traffic crashes. Killings, rape, disgraced celebrities... everything and anything that is remotely negative can become news. And there are at least half a dozen channels that are dedicated to news alone. News about how a college student burnt herself using the hair curler, news about how a truck cruising the highway was seen 'unloading' cargo without the driver noticing... Most recently, the news of a celebrity and her boyfriend, who in a state of drunkedness allegedly kicked a taxi driver and caused him broken ribs, captured the nation's attention for several days.
"Taiwan is not that dangerous! Taiwanese people are the kindest and most friendly people I have come across," I said. I may be biased, but even friends from overseas who have visited my homeland have told me how touched they are by the warmth of the people, and by how willing people are to extend a helping hand to strangers. "Sometimes too kind," I said. And I went off on a rant about how historically Taiwanese people have always been subjugated by another regime, the previous of which was the murderous Chinese Nationalists...
"You know why I want to go on this trip? I want to know my homeland" I said. Too many people who live here do not know the name of the local river nearby, and yet have been indoctrinated to know off by heart the names of rivers in mainland China. A phenomenon that I find alarming, and solely because the Chinese Nationalist regime for decades brainwashed people into thinking Taiwan is a part of China, and that we are all Chinese. Hogwash...
"And I want to find myself on this trip. I want to find direction, find out what I would like to do in life, what I want out of life," I explained. Why now? Because I can. Because I need to. I simply need to take the time for myself and clear my mind, get away a bit from being faced with mum's condition every waking moment... get away from the seeing mum sick, watching her vomit, seeing her lie in bed all day. Is it selfish of me to get away, to want to 'escape', especially as I am sure mum would do anything to 'escape' from her condition, to get away from her old, sick body....? Is it selfish of me to want to go off on a personal quest and soul-searching? I'm not sure. I can think of a lot of reasons why I would like to go off on my own and bike around for ten, twelve days. But what is the reason not to?
I think after all the time I have spent with mum, and with all that I do for her, I deserve a little time alone, I deserve a break.
I hugged mum, and lay next to her for a few moments. Silently, I hoped her body can rest... silently, I hope that she can have an undisturbed night of sleep, for she has for so many, many days been restless and sleepless, and it is wearing her down. "I know you care about me, and that you are concerned. But I will be fine. I really want to do this."
She smiled, and nodded.
" 'Cheated' on? By whom? Please explain!" I said. In Taiwanese, a language spoken by a people who love euphemisms ambiguities, to be "cheated on" generally means someone taking advantage of you. In a variety of ways... gauging you with exuberant prices, exploiting you sexually, perhaps leading you astray and taking you to "improper" places. I really had no idea what mum meant.
"I'm just worried about you being on your own..."
"Worried! I've lived in London, not exactly the safest city in the world. I live in Montreal, where there are gangs and shootings and plentiful of drugs. I grew up alone in the Netherlands! Why were you not worried about me then, but worried about me in Taiwan?" I know a mother is always concerned. But in Taiwan there is a paranoia that danger is everywhere. I blame it solely on the news media and sensationalist newspapers that thrive on reporting on crime, suicides, kidnappings, fires, accidents and traffic crashes. Killings, rape, disgraced celebrities... everything and anything that is remotely negative can become news. And there are at least half a dozen channels that are dedicated to news alone. News about how a college student burnt herself using the hair curler, news about how a truck cruising the highway was seen 'unloading' cargo without the driver noticing... Most recently, the news of a celebrity and her boyfriend, who in a state of drunkedness allegedly kicked a taxi driver and caused him broken ribs, captured the nation's attention for several days.
"Taiwan is not that dangerous! Taiwanese people are the kindest and most friendly people I have come across," I said. I may be biased, but even friends from overseas who have visited my homeland have told me how touched they are by the warmth of the people, and by how willing people are to extend a helping hand to strangers. "Sometimes too kind," I said. And I went off on a rant about how historically Taiwanese people have always been subjugated by another regime, the previous of which was the murderous Chinese Nationalists...
"You know why I want to go on this trip? I want to know my homeland" I said. Too many people who live here do not know the name of the local river nearby, and yet have been indoctrinated to know off by heart the names of rivers in mainland China. A phenomenon that I find alarming, and solely because the Chinese Nationalist regime for decades brainwashed people into thinking Taiwan is a part of China, and that we are all Chinese. Hogwash...
"And I want to find myself on this trip. I want to find direction, find out what I would like to do in life, what I want out of life," I explained. Why now? Because I can. Because I need to. I simply need to take the time for myself and clear my mind, get away a bit from being faced with mum's condition every waking moment... get away from the seeing mum sick, watching her vomit, seeing her lie in bed all day. Is it selfish of me to get away, to want to 'escape', especially as I am sure mum would do anything to 'escape' from her condition, to get away from her old, sick body....? Is it selfish of me to want to go off on a personal quest and soul-searching? I'm not sure. I can think of a lot of reasons why I would like to go off on my own and bike around for ten, twelve days. But what is the reason not to?
I think after all the time I have spent with mum, and with all that I do for her, I deserve a little time alone, I deserve a break.
I hugged mum, and lay next to her for a few moments. Silently, I hoped her body can rest... silently, I hope that she can have an undisturbed night of sleep, for she has for so many, many days been restless and sleepless, and it is wearing her down. "I know you care about me, and that you are concerned. But I will be fine. I really want to do this."
She smiled, and nodded.
15 February 2012
Life planning
 |
| A provocative campaign to raise awareness for colorectal cancer. |
The question been on my mind for some time. What are alternatives are there if one
were to opt to stop all treatment? I know what the likely consequences
of that will be, but what does that mean in practical terms? What does
that mean at the "end of the road"?
I saw the words "HOPE" on an billboard at a metro station some weeks back. It was an ad for a charitable foundation specialised in providing support and aid for cancer patients and their families. So I looked up the address, and used the time alone to pay the charity a visit.
It was a little office in a residential area, located in an obscure side street. And yet, on the door, in big colourful letters "Little Station of Hope". The organisation has existed since 1982, and was formed by a number of doctors and nurses who wanted to create a body to provide cancer patients and their families exactly what the name says: hope. Hope in terms of offering medical advice, organising gatherings and courses, offering counseling and financial support for those in need. There are even books and wigs you can borrow if you need to.
It was a little office in a residential area, located in an obscure side street. And yet, on the door, in big colourful letters "Little Station of Hope". The organisation has existed since 1982, and was formed by a number of doctors and nurses who wanted to create a body to provide cancer patients and their families exactly what the name says: hope. Hope in terms of offering medical advice, organising gatherings and courses, offering counseling and financial support for those in need. There are even books and wigs you can borrow if you need to.
When I entered, it was very busy, for a class just ended. I stood by the door for a little while before a lady came up to me and asked what I was interested in. She was
extremely friendly and listened to me describe mum's condition and
treatments over the last six years. Surgery to remove a Stage III tumour
on the colon in 22006, relapse in 2008 and annual chemotherapy ever since. I had
pictures of mum's medical report stored on my phone, so I listed the
drugs mum has used or taken.
"Four years already?
She's done chemotherapy for four years?" There was disbelief in her
voice. And from her expression I could see she finally understood why
mum (and I, or perhaps I most of all?) are considering to just "let
things be". "Oh, she really has used all the possible drugs there
are..."
And I reminded her that mum also did radiotherapy last year, and underwent a major surgery a month and a half ago. And just today, she completed four sessions of cyberknife treatment. What else is there that she has not tried? And the cancer keeps returning, keeps popping up in other areas... So brave, so very brave is my dear mother... I could burst into tears at the mere thought of how much she underwent in the past couple of years, and how long I have accompanied her on this journey. I held back...
And I reminded her that mum also did radiotherapy last year, and underwent a major surgery a month and a half ago. And just today, she completed four sessions of cyberknife treatment. What else is there that she has not tried? And the cancer keeps returning, keeps popping up in other areas... So brave, so very brave is my dear mother... I could burst into tears at the mere thought of how much she underwent in the past couple of years, and how long I have accompanied her on this journey. I held back...
The nurse-volunteer explained to me the possibilities, and
that at this stage it is too early to say in detail what kind of care
mum would need. Frankly, we are not there yet, despite mum's worsening sores and continually weak health. But of course it is always good to think ahead, to plan ahead. To plan for life (and, yes, plan for dying and death...).
"Palliative care" is an
option if you don't want to continue any form of treatment. In line with what I have been thinking, it doesn't mean giving up. It just means that the patient stops receiving treatment for cancer and just "let things be". The focus will then to alleviate pain and ensure the patient is as comfortable as possible, till the very end You still have to go to the hospital every two months or so to followup on
developments. If there are symptoms, or any worsening of the illness,
the doctor can prescribe ways to reduce or alleviate the pain.
 |
| Four celebrities, joined by members of the public, are doing a 21-day run around the island to raise awareness for ovarian cancer. |
"It
may be possible the cancer will spread to her stomach, damage her
digestive system, infiltrate the kidneys..." the care worker explained. By that point, feeding regimes will have to be established, and also we will have to think about ways to get rid of any bodily wastes. By that point, at the very end, mum will definitely need constant care and need someone to be by her side all the time to attend to her needs. Much like the first weeks immediately after her surgery. All this can be done at the hospital, or at home, where a healthcare worker can visit regularly to ensure a comfortable and dignified end. Should things come to that, details will have to be talked through with the doctor and healthcare workers.
The way she described possible outcomes of not proceeding with treatment sounded daunting, bleak and frankly painful. But is not the alternative, of being in the hospital day in and day out, of being so physically and mentally eroded by chemicals and medicine, really a better option? I will have to return another day and bring mum to talk about all of this. For it is her life, and she must understand and get to fully know what the possibilities are.
"For now, just do as you have always done," the nurse-volunteer said. Be like normal people, do things you enjoy, travel. There is no reason not to. There really is no reason not to.
"Have you thought about what your plans are?" she asked.
I was taken aback by her question, for I went to the charity with mum's condition in mind, and had not really thought me or my plans would be brought up. I told her my life over the past few years, all the traveling, all those restless, and at times sleepless, nights. I told her my fears of committing to anything, whether it's a career or in my personal life. She listened quietly and nodded. She understood.
"Often what a parent wants is not for you to give up everything because she is ill..." she said, "Of course cancer can affect family members and future plans, but have you thought about perhaps your mum would be happier and can "go" easier if you were more settled?"
I did. All of this I did think about. I know, and I can see that my presence over the long run can cause her much grief, much pressure-- to the extent that she has even told me before she would want to "go" (ie die) quicker so I can go off and start living, instead of hanging around her and taking care of her. But there is always this fear.... this incessant fear that if I go off and pursue my dreams and my happiness, I may miss that day she...
"Sounds like there are no regrets between you and your mother," she said calmly, "There does not necessarily need to be a conflict between being there for your mother and doing what you want in life." How many people like my mum and me has she come across throughout her career and her time at the charity? The feelings of care, of love and fears of losing a dear, dear one is universal. "If there are no regrets, then that does not mean you are abandoning her. You can still give her moral support, talk to her often, encourage her. I am sure you will be there at that crucial end..."
I sure hope I will be, I can be... I so much do hope so... But that is not for me to decide, for I cannot influence fate, I cannot influence the way or speed at which mum's cancer chooses to grow or spread... I cannot influence, let alone control, the unknown future.
All I can do is find mum a network of support she can turn to other than me, for I am not a medical expert, nor am I someone who can fully relate to what it feels like, what it really feels like, to be a cancer patient. All I can do is show her there are other options than face treatment after treatment.
And this is what I am trying to do. Trying to do.
"For now, just do as you have always done," the nurse-volunteer said. Be like normal people, do things you enjoy, travel. There is no reason not to. There really is no reason not to.
"Have you thought about what your plans are?" she asked.
I was taken aback by her question, for I went to the charity with mum's condition in mind, and had not really thought me or my plans would be brought up. I told her my life over the past few years, all the traveling, all those restless, and at times sleepless, nights. I told her my fears of committing to anything, whether it's a career or in my personal life. She listened quietly and nodded. She understood.
"Often what a parent wants is not for you to give up everything because she is ill..." she said, "Of course cancer can affect family members and future plans, but have you thought about perhaps your mum would be happier and can "go" easier if you were more settled?"
I did. All of this I did think about. I know, and I can see that my presence over the long run can cause her much grief, much pressure-- to the extent that she has even told me before she would want to "go" (ie die) quicker so I can go off and start living, instead of hanging around her and taking care of her. But there is always this fear.... this incessant fear that if I go off and pursue my dreams and my happiness, I may miss that day she...
"Sounds like there are no regrets between you and your mother," she said calmly, "There does not necessarily need to be a conflict between being there for your mother and doing what you want in life." How many people like my mum and me has she come across throughout her career and her time at the charity? The feelings of care, of love and fears of losing a dear, dear one is universal. "If there are no regrets, then that does not mean you are abandoning her. You can still give her moral support, talk to her often, encourage her. I am sure you will be there at that crucial end..."
I sure hope I will be, I can be... I so much do hope so... But that is not for me to decide, for I cannot influence fate, I cannot influence the way or speed at which mum's cancer chooses to grow or spread... I cannot influence, let alone control, the unknown future.
All I can do is find mum a network of support she can turn to other than me, for I am not a medical expert, nor am I someone who can fully relate to what it feels like, what it really feels like, to be a cancer patient. All I can do is show her there are other options than face treatment after treatment.
And this is what I am trying to do. Trying to do.
14 February 2012
Wish
I've had this wish for many years. And for some reason the desire to fulfill this wish is stronger than ever before. Is it this movie I just watched? Or this website I just encountered?
I want to bike around Taiwan.
A distance of around 1000km, which some have done in around 10 days. It seems like a daunting challenge, physical and also mental. And will I be able to do it? I know I do need a challenge now, because the past months, caught between mum's deteriorating condition and the end of the deepest relationship I've ever had, has caused me to become very down and lethargic. I need a challenge to prove to myself that I can achieve something if I set my hear to it. I need a challenge to prove to myself, and partly also to the world, that I can be active, I can be alive.
For a while now, I've felt so useless and rejected, so lost and aimless. Being here with mum, having to tend to her needs and watching her become so weak and so ill, has also drained the life and enthusiasm for life out of me. If I can do this trip, if I can with my own two legs cycle around the island, overcome steep inclines, rough road conditions, fight against the noise and oppression of road traffic, then I have a reason, I have more reason, to believe that I can do anything.
And I need a reason right now, to live, to continue, to hope and to dream...
I really do. Because frankly, I feel as if I am dying, like I am merely surviving from day to day, looking forward to sleep and escape, and not looking forward to waking up or anything that will take much effort. And this is not me. I know this is not who I am, but I have somehow become like this, or allowed myself to become like this... And I need to prove to myself, and to the world, that this lethargic, exhausted and hidden boy is not the real me. The real me needs to break out from the troubles and burdens life has laden on top of me. The real me needs and can break free!
I need a reason to pick myself again, a reason to be proud of myself, a reason to look back and smile about. A reason to prove to myself I can set myself a challenge and accomplish that challenge.
And what beautiful scenery I will see along the way... what sense of joy I will experience from experience true Formosa at its finest and with the power of my own body!
I want to bike around Taiwan.
A distance of around 1000km, which some have done in around 10 days. It seems like a daunting challenge, physical and also mental. And will I be able to do it? I know I do need a challenge now, because the past months, caught between mum's deteriorating condition and the end of the deepest relationship I've ever had, has caused me to become very down and lethargic. I need a challenge to prove to myself that I can achieve something if I set my hear to it. I need a challenge to prove to myself, and partly also to the world, that I can be active, I can be alive.
For a while now, I've felt so useless and rejected, so lost and aimless. Being here with mum, having to tend to her needs and watching her become so weak and so ill, has also drained the life and enthusiasm for life out of me. If I can do this trip, if I can with my own two legs cycle around the island, overcome steep inclines, rough road conditions, fight against the noise and oppression of road traffic, then I have a reason, I have more reason, to believe that I can do anything.
And I need a reason right now, to live, to continue, to hope and to dream...
I really do. Because frankly, I feel as if I am dying, like I am merely surviving from day to day, looking forward to sleep and escape, and not looking forward to waking up or anything that will take much effort. And this is not me. I know this is not who I am, but I have somehow become like this, or allowed myself to become like this... And I need to prove to myself, and to the world, that this lethargic, exhausted and hidden boy is not the real me. The real me needs to break out from the troubles and burdens life has laden on top of me. The real me needs and can break free!
I need a reason to pick myself again, a reason to be proud of myself, a reason to look back and smile about. A reason to prove to myself I can set myself a challenge and accomplish that challenge.
And what beautiful scenery I will see along the way... what sense of joy I will experience from experience true Formosa at its finest and with the power of my own body!
30 January 2012
Proposal
30012012.1542
Woke up extremely early, just after six to make breakfast. As she has plans to take extensive scans of her body, the nurse said she cannot eat anything after seven in the morning.
Mum ate, a bowl of congee with some greens and stir-fried egg and tomatoes in soy sauce, and some nuts.
Within ten minutes everything came out again...
I could eat no more, and my face became glum and heavy. My stomach started to churn, in the way it does when I'm under extreme levels of stress and worry. Last night just before bed she threw up. And now just after bed mum throws up again... Is it something I cooked? Is it because it's not good enough? I became upset... Very upset and moody seeing her like that. I know it does not help the situation at all. And what made it worse was that she kept apologising...
"I'm sorry for throwing up... I'm sorry for being like this..." As if she can help herself... As if she chooses to be this ill and unwell. Nobody, nobody in their right mind, would choose to be afflicted with cancer.
Nobody!
Mum's apologies were perhaps more upsetting than watching her throw up and bend over the toilet bowl. And every time, after she is done, I would go hose everything down and clean up any "mess" left behind.
My hurt and sadness turned to anger, not directed at her, but at the situation, at my own helplessness... I know, rationally and fundamentally I know it does not help to loose my calm and composure. I know I cannot possibly being around mum, who needs support and kindness, whenever she feels so unwell and sick. But after a month of constantly being there at her side, I cannot help but lose "it"... "Forgive me," I said, "I'm so moody and agitated these days, and everything is too much."
I was not angry or frustrated at get, but at the fact that I try and I try to make her feel better, I try and I try to cool her a decent meal with all the necessary nutrients and anti-oxidants, and nothing stays in her stomach. Her body, perhaps her cancer seems to reject everything in the last week almost... Reject and eject everything out of her mouth, making her feel so very sick and frail afterwards...
Naturally I called the hospital to call off the planned appointment for scans and tests. Once again, postponed to next week, the second postponement because mum simply is too weak to undergo further treatment...
I was so tired I fell asleep. For sleep is the only safe refuge I cab seek and find these days... Sleep and write and rave about everything I am experiencing now, about everything that is causing me such traumatic stress and a terribly headache.
"Go, go away for a few days..." mum said to me when I woke up again.
I was reluctant, but I know I need to. I am causing her pain to be in this extremely agitated and frustrated framework of mind. I even disgust myself with the anger and frustration I feel deep inside seeing mum so sick and in so much pain...
As brother will be around for two days, I decided it was time to go. Time for me to get away from it all and refresh my mind, rejuvenate my spirit. Immersed in such a high stress and at times deeply personal and helpless situation is extremely damaging to my mental and physical health. I can feel it...
Besides, it's time to give brother and mum some time alone, and in a way for him to see what it is I have been facing everyday for yhr past month, every few months for the past four years...
1657
I dozed off and when I woke up, it was almost time to get off. I looked outside the window, and in the not too far off distance was the city. I never really noticed how modern it has become, Taichung. So many skyscrapers, crowded in an urban sprawl, and in the background, mountains of central taiwan.
Did this city suddenly have more of an appeal to me now? Before, it was merely a place where I transferred on my way to the mountains. Recently, it is the hometown of my sister-in-law and her extended family. Could it be my new hometown?
In one of those rare occasions, mum, brother and I had a chance to be together and talk. We did that last night after dinner, and it was then that brother proposed to mum to relocate to Taichung.
"That way, you'll be closer to [my sister-in-law's] relatives, and they can check up on you more regularly..."
It was a great idea, one i was grateful for, and perhaps the most meaningful way brother has contributed to mum's road to recovery. Mum seemed moved by that proposal. She needs a whole new start in life, especially if after the (now postponed) cyberknife treatment she does not wish to continue with any more treatment. Mum really has to leave taipei, leave the dreadfully crowded and polluted place and the wet climate of the north and go somewhere where the temperature is the mildest in the country. Mum really needs to leave behind the neighbourhood, which for the past few years, and even before that when dad was still alive, has been filled with memories of hospitals and doctor's appointments. Besides, Taichung is a place where she spent her university years, and though much has changed in the past three decades, I remember her telling me that she enjoyed those years there.
It doesn't have to be a permanent move, for she could just rent a place and see how things go. My sister-in-law's family know a lot of people, and they have been very willing ever since my brother got married to help mum. When mum and my brother's mother-in-law spoke yesterday, they said they could already start looking for a place. Of course most likely I'd have to spend some time looking at apartments on mum's behalf, but I don't mind that if in the end mum is in a city where there are many more people who can look out for her. And as my sister-in-law's family know a lot of people, they can easily find mum a carer who can come every other day or so to help mum with her household chores and even keep her company. At the moment, being in Taipei, there really is no one who is close enough, and there really is no reason keeping mum there. And mum does not need a full-time maid who is there all the time, for she is still mobile and can do most things on her own.
Of course, she would have to change hospitals, but she wanted to do that anyways because she feels her main physician has in recent times been less courteous, especially as mum went to operate on her spine with a surgeon not on her main physician's recommendation. But that is just petty rivalry between big egos and mum does not need to get worse health care and attention just because of that...
The proposal to move sounds very tempting, and very assuring. Being surrounded by relatives (for that's what my sister-in-law's family are now...) has benefits in that mum can be less lonely, will have people she can interact with and help her if need be. And she will be much closer to the countryside, to the monastery She likes to visit, so she can go more regularly and be inspired and encouraged by the monk's teachings. In Taipei, where she is now, there is her one or two close friends, who only come around once in a while. Otherwise, mum spends most of her time alone at home, watching tv or in front of te computer...she tells me she is frustrated and lonely, and I can see it, I can feel it...
It remains to be seen whether the plan will work out. "Move for yourself, only because you want to, not because you feel like it's best for my sake," I said to her. Part of me is afraid she is moving because she does not want me come back here to be with her, and that by moving I can be more assured she is surrounded by people who can care for her more and more often.
So it remains to be seen if it'll all work out. But I smiled at the proposal, and hopefully it will bring mum positive new changes and a new start in life.
Woke up extremely early, just after six to make breakfast. As she has plans to take extensive scans of her body, the nurse said she cannot eat anything after seven in the morning.
Mum ate, a bowl of congee with some greens and stir-fried egg and tomatoes in soy sauce, and some nuts.
Within ten minutes everything came out again...
I could eat no more, and my face became glum and heavy. My stomach started to churn, in the way it does when I'm under extreme levels of stress and worry. Last night just before bed she threw up. And now just after bed mum throws up again... Is it something I cooked? Is it because it's not good enough? I became upset... Very upset and moody seeing her like that. I know it does not help the situation at all. And what made it worse was that she kept apologising...
"I'm sorry for throwing up... I'm sorry for being like this..." As if she can help herself... As if she chooses to be this ill and unwell. Nobody, nobody in their right mind, would choose to be afflicted with cancer.
Nobody!
Mum's apologies were perhaps more upsetting than watching her throw up and bend over the toilet bowl. And every time, after she is done, I would go hose everything down and clean up any "mess" left behind.
My hurt and sadness turned to anger, not directed at her, but at the situation, at my own helplessness... I know, rationally and fundamentally I know it does not help to loose my calm and composure. I know I cannot possibly being around mum, who needs support and kindness, whenever she feels so unwell and sick. But after a month of constantly being there at her side, I cannot help but lose "it"... "Forgive me," I said, "I'm so moody and agitated these days, and everything is too much."
I was not angry or frustrated at get, but at the fact that I try and I try to make her feel better, I try and I try to cool her a decent meal with all the necessary nutrients and anti-oxidants, and nothing stays in her stomach. Her body, perhaps her cancer seems to reject everything in the last week almost... Reject and eject everything out of her mouth, making her feel so very sick and frail afterwards...
Naturally I called the hospital to call off the planned appointment for scans and tests. Once again, postponed to next week, the second postponement because mum simply is too weak to undergo further treatment...
I was so tired I fell asleep. For sleep is the only safe refuge I cab seek and find these days... Sleep and write and rave about everything I am experiencing now, about everything that is causing me such traumatic stress and a terribly headache.
"Go, go away for a few days..." mum said to me when I woke up again.
I was reluctant, but I know I need to. I am causing her pain to be in this extremely agitated and frustrated framework of mind. I even disgust myself with the anger and frustration I feel deep inside seeing mum so sick and in so much pain...
As brother will be around for two days, I decided it was time to go. Time for me to get away from it all and refresh my mind, rejuvenate my spirit. Immersed in such a high stress and at times deeply personal and helpless situation is extremely damaging to my mental and physical health. I can feel it...
Besides, it's time to give brother and mum some time alone, and in a way for him to see what it is I have been facing everyday for yhr past month, every few months for the past four years...
1657
I dozed off and when I woke up, it was almost time to get off. I looked outside the window, and in the not too far off distance was the city. I never really noticed how modern it has become, Taichung. So many skyscrapers, crowded in an urban sprawl, and in the background, mountains of central taiwan.
Did this city suddenly have more of an appeal to me now? Before, it was merely a place where I transferred on my way to the mountains. Recently, it is the hometown of my sister-in-law and her extended family. Could it be my new hometown?
In one of those rare occasions, mum, brother and I had a chance to be together and talk. We did that last night after dinner, and it was then that brother proposed to mum to relocate to Taichung.
"That way, you'll be closer to [my sister-in-law's] relatives, and they can check up on you more regularly..."
It was a great idea, one i was grateful for, and perhaps the most meaningful way brother has contributed to mum's road to recovery. Mum seemed moved by that proposal. She needs a whole new start in life, especially if after the (now postponed) cyberknife treatment she does not wish to continue with any more treatment. Mum really has to leave taipei, leave the dreadfully crowded and polluted place and the wet climate of the north and go somewhere where the temperature is the mildest in the country. Mum really needs to leave behind the neighbourhood, which for the past few years, and even before that when dad was still alive, has been filled with memories of hospitals and doctor's appointments. Besides, Taichung is a place where she spent her university years, and though much has changed in the past three decades, I remember her telling me that she enjoyed those years there.
It doesn't have to be a permanent move, for she could just rent a place and see how things go. My sister-in-law's family know a lot of people, and they have been very willing ever since my brother got married to help mum. When mum and my brother's mother-in-law spoke yesterday, they said they could already start looking for a place. Of course most likely I'd have to spend some time looking at apartments on mum's behalf, but I don't mind that if in the end mum is in a city where there are many more people who can look out for her. And as my sister-in-law's family know a lot of people, they can easily find mum a carer who can come every other day or so to help mum with her household chores and even keep her company. At the moment, being in Taipei, there really is no one who is close enough, and there really is no reason keeping mum there. And mum does not need a full-time maid who is there all the time, for she is still mobile and can do most things on her own.
Of course, she would have to change hospitals, but she wanted to do that anyways because she feels her main physician has in recent times been less courteous, especially as mum went to operate on her spine with a surgeon not on her main physician's recommendation. But that is just petty rivalry between big egos and mum does not need to get worse health care and attention just because of that...
The proposal to move sounds very tempting, and very assuring. Being surrounded by relatives (for that's what my sister-in-law's family are now...) has benefits in that mum can be less lonely, will have people she can interact with and help her if need be. And she will be much closer to the countryside, to the monastery She likes to visit, so she can go more regularly and be inspired and encouraged by the monk's teachings. In Taipei, where she is now, there is her one or two close friends, who only come around once in a while. Otherwise, mum spends most of her time alone at home, watching tv or in front of te computer...she tells me she is frustrated and lonely, and I can see it, I can feel it...
It remains to be seen whether the plan will work out. "Move for yourself, only because you want to, not because you feel like it's best for my sake," I said to her. Part of me is afraid she is moving because she does not want me come back here to be with her, and that by moving I can be more assured she is surrounded by people who can care for her more and more often.
So it remains to be seen if it'll all work out. But I smiled at the proposal, and hopefully it will bring mum positive new changes and a new start in life.
25 January 2012
No more, no more...
Tears were rolling in her eyes, she said as she recalled that day when she opened my thesis and read my dedication. It is things like that she lives for, she said... Touching moments in life, not hospital treatments and doctor's appointments.
I bit the inside of my lower lip, so hard I could taste my own blood. Biting the insides of my lips is something I have learned can control the tears. Strange, because it hurts so much, but the physical pain perhaps overpowers the mental pain...
I hesitated to say it, but it has been on my mind a long time. I hesitate because I wonder... is it for her own good that I am saying this, or for my own selfish interests? Is it because I don't want to be (t)here to take care of mum, as I have done on and off for the past three years or so, or is it really because I have her best interests at heart?
"Stop the treatments", I suggested. Stop them completely.
No more chemotherapies...
No more radiotherapies...
No more cancer indices...
No more scans and tests and injections...
No more hospital visits, no more sitting in the crowded corridors and waiting, and waiting...
No more, no more...
I know I have alluded to my message before, so it was not a shocker. The reality is this: the cancer is spreading, unstoppably. How fast, how slow, I am not sure. What is certain is if you treat one place, another problem area pops up. For now, the the greatest source of her pain, the tumour compressing on the spine, has been removed. And in a few days she is due for treatment to (hopefully) eradicate any remaining traces of the cancer on the spine.
And then what? Her main physician referred to the fact that she may need to undergo more chemotherapy after the upcoming radiotherapy to contain her illness. Yes, contain, because there is no cure once cancer metastasises, which it already has. And sometime ago, he told mum that there are no drugs that are effective any more, because she's used them all. Once you have used one, the cancer cells become resistant. The chemo just kills the healthy cells and has very little effect on the ones you want to kill. Xeloda, Folfox, Folfiri, Erbitux... what else is there out there? And if the treatments are not working, why keep on doing it? How much more money must we burn through to continue with treatment after treatment? It's not about the money... it's about the dignity and quality of life.
How painful is it to watch a dear one suffer? How painful is it to watch your loved one bend over the toilet bowl and choke on her own vomit? How painful is it to have to quickly sweep away the falling strands of hair so that the one you care about more than life itself does not have to be reminded of her hair loss...? Multiply my feelings tenfold, hundredfold, and that pain would never ever equate the pain, fears and anxieties mum feels undergoing treatment after treatment, time after time. Is it any wonder why mum would like to "end it all"? Is it any wonder mum is becoming dazed and numb and looks so very, very tired...?
So stop it all.
Stop it all and let fate take its course?
Stop it all, and let the demonic cells grow and multiply, feed and fester inside her body until one day her body is but a rotten, cancerous corpse...?
After signing the agreement to proceed with cyberknife, with what I suggested to mum, why do I again feel like mum's life is placed in my hands...? Do I hold the warrant to her life (and death)? Is it because I really care, or I am too tired of caring any more and want this to quickly end?
How heavy, how very, very heavy that burden, that responsibility is... how heavy it is to tell your own mother to give up on treatment while she is ahead, knowing fully well what the outcome of that decision might be... And where was brother while we are discussing such a life changing matter, discussing the future life of our dear mother? Playing mahjong with his new family elsewhere in the country. Is she not also my brother's mother...?
Mum understood what I was saying, and perhaps why I was saying it. It's soon her sixtieth birthday... does she want to spend the last few years, months, or however long she has still, of her life going in and out of the hospital? She's lived that life for the last four years, and I have lived it, from afar and from close by, with her. Sixty years of life she's almost had, and would it not be a shame if it were all overshadowed by the pain and misery of the confinement of the hospital walls in that final leg of her journey in this universe? Dad experienced it, my uncle, who is perhaps nearing the end of his life, is experiencing it... so many people I have seen in the past few years just seem to rot away in hospitals. And how horrible that is... how undignified, and what a crude and colourless way to leave this world that is!
"Don't you want to see more of the world? See the flowers blossom in Spring in Europe again?" I was reminded of a story she once shared with me about this elderly couple, both of who got cancer. The husband (or was it the wife?) decided to go travel, see and explore the world and seize his days, while the wife (or husband) decided to stay home. The latter died soon after, while the other traveled the world and experienced life in a totally new light... Eventually, with absolute certainty, we will all die. But we may be able to influence the way we die, or at the very least the final days and moments before we die. Is this naive make-belief or bravely and confidently facing death?
I know mum was moved by my words, and I know deep down, she agrees with me, for she has on so many occasions expressed to me her disdain for hospitals and building fatigue of having to go through so many treatments, take so many different pills-- all of which are stacked up on her shelf like little mounds. But can she really just "go"? Can she really "live and let live", as they say? In this case, it really is about living, and letting life live itself for however much longer, in whatever way it carries you...
Of course, ultimately it is mum's decision. But one that will have a bearing on my life and my future. What if she follows my advice and urgings and suffers a horrible, painful end? Will I be able to live the rest of my life knowing I influenced the person dearest to my heart, to my life, to forgo the chance at prolonging her life by forgoing medical treatment...? Will I be haunted by nightmares, more than ever before, and tormented by a guilty conscience if influenced by what I said mum stops everything?
Ask me in a month's time, and perhaps this issue may be moot.
Ask me in a year's time, and perhaps these questions will have been answered.
21 January 2012
Decision
When you want to have everything, you end up with nothing.
When you give up everything, you gain everything.
I have heard it said before, I have read about it, about how people who make great sacrifices in their lives and in the end they live in great happiness and enjoy such peace.
Can I too do the same? Can I give up everything I have built up, I have ever wished for, for a greater cause, for a good that is beyond me? Am I ready to make a sacrifice... is it even a sacrifice at all? What will I really lose in the end, what do I have to give up?
Only time will tell.
When you give up everything, you gain everything.
I have heard it said before, I have read about it, about how people who make great sacrifices in their lives and in the end they live in great happiness and enjoy such peace.
Can I too do the same? Can I give up everything I have built up, I have ever wished for, for a greater cause, for a good that is beyond me? Am I ready to make a sacrifice... is it even a sacrifice at all? What will I really lose in the end, what do I have to give up?
Only time will tell.
21 December 2011
Cold
Mum may have been found, but noticeably she sounds more frail and weaker. On the phone today she told me again that she feels personally the treatment does not seem to be working any more. "So many treatments, and I'm getting weaker and weaker..." Is there an end in sight? How much longer? How much more?
The tiredness, I hear it in her voice, I hear it in the way she talks about how her days, which mainly consist of staying at home, watching TV and surfing the net. Even just reading takes a lot of energy, and she feels like she is losing her eyesight, and straining hard to see... When she went "missing", I called my aunt, and she said mum has really lost a lot of weight, and that she will try to spend as much time with mum as possible to make sure mum eats properly. "Because when she is alone she doesn't eat well enough..."
Mum said her feet and hands are really cold, and that another cold front is fast approaching. The other day, my ex and I were at this exposition of arts and crafts made by local artists and craftspeople, and he insisted on buying something warm for mum to wear. He actually proposed to buy slippers decked with lambs wool, but I said that it would be too warm and that she would never wear it. I said that in a way also so my friend would not have to spend so much money, especially as he has already bought a lot for mum. And the slippers were close to a hundred dollars a pair...
Funny thing, when I asked what I could send her for the new year, she said perhaps some warm slippers. How wrong I was... So earlier today I rushed to the expo again to buy the slippers, and placed it inside a box containing all sorts of goodies and gifts.
At the bottom of the pile, I included a copy of my thesis. The thesis I finally finished and dedicated to my mum. Inside, I wrote a long message, thanking her (and dad) for all the support and encouragement she has (they have) given me throughout my life. "This thesis is about preventing conflict in outer space and concern for the natural environment," I wrote, "Because these are values that you [my parents] have instilled in me since childhood."
I'm not sure what mum will think when she reads that. But with the completion of the thesis, soon the Japanese daruma doll mum bought in Japan a few years back can have one of his eyes "opened". For the completion of this degree is a life wish of hers, and I have finally been able to accomplish yet another, and make her proud.
The tiredness, I hear it in her voice, I hear it in the way she talks about how her days, which mainly consist of staying at home, watching TV and surfing the net. Even just reading takes a lot of energy, and she feels like she is losing her eyesight, and straining hard to see... When she went "missing", I called my aunt, and she said mum has really lost a lot of weight, and that she will try to spend as much time with mum as possible to make sure mum eats properly. "Because when she is alone she doesn't eat well enough..."
Mum said her feet and hands are really cold, and that another cold front is fast approaching. The other day, my ex and I were at this exposition of arts and crafts made by local artists and craftspeople, and he insisted on buying something warm for mum to wear. He actually proposed to buy slippers decked with lambs wool, but I said that it would be too warm and that she would never wear it. I said that in a way also so my friend would not have to spend so much money, especially as he has already bought a lot for mum. And the slippers were close to a hundred dollars a pair...
Funny thing, when I asked what I could send her for the new year, she said perhaps some warm slippers. How wrong I was... So earlier today I rushed to the expo again to buy the slippers, and placed it inside a box containing all sorts of goodies and gifts.At the bottom of the pile, I included a copy of my thesis. The thesis I finally finished and dedicated to my mum. Inside, I wrote a long message, thanking her (and dad) for all the support and encouragement she has (they have) given me throughout my life. "This thesis is about preventing conflict in outer space and concern for the natural environment," I wrote, "Because these are values that you [my parents] have instilled in me since childhood."
I'm not sure what mum will think when she reads that. But with the completion of the thesis, soon the Japanese daruma doll mum bought in Japan a few years back can have one of his eyes "opened". For the completion of this degree is a life wish of hers, and I have finally been able to accomplish yet another, and make her proud.
Subscribe to:
Posts (Atom)