Three hours countdown

I suddenly heard mum groan. It was just after four in the morning. She twisted and turned in bed, and was unresponsive to my questions to her. "What's wrong? Mum, tell me what's wrong...?"

"I can't say..." Something was bothering her, but she couldn't (or didn't want to) say what it was. Was it a nightmare? Was it her sore arms or legs that are keeping her from sleeping? Was it "something else" bothering her (yes, I mean the supernatural...)? She just lay there, writhed her body in apparent discomfort. Her legs were so thin and twisted in a mangle like the plastic tubes coming put of the artery in her neck.

I did what I could think of to calm my down... I massaged her arms, her legs, her feet, her hands... With each rub, each stroke, each pull and push motion, I silently wished my touch would take away whatever was bothering mum. I massaged her with love, with the love of a child, with the devotion and dedication of a child who wishes nothing more than to calm his mother's mind and spirit a few hours before a major operation-- an operation which could very well determine mum's fate and course of life...

I can only imagine, only just imagine and even that is not close enough to what she must be feeling, what she must be thinking of fearing... The heat packs I prepared for her I placed under her shoulder blades. And suddenly, in a rare moment of clarity, mum opened her eyes. "Thank you... Thank you for everything..."

Misunderstood

"You have to think about it! You can't just hand it all over to the doctor for the doctor to decide! It's your life, your body!" I was getting emotional, unnecessarily so, for being so may have just diminished what I was trying to say.

One of the doctors in the medical team charge in charge of dealing with mum's inability to eat came in this morning. He said after careful consideration, and after the failure of the NJ tube to fully enter the intended area of the intestines, the only option remaining is bypass is surgery. He did not say whether or not we have to proceed, but if we do want to, the earliest that it can be done is coming Tuesday.

"Think about things, mum. You don't always have to do what the doctor says." In this case, the doctor has not said anything concrete yet, but just presented the option of surgery. And to me at least, they presented facts that they have not presented to mum.

"I'll let the doctor decide," mum said. I don't know if she thought things through, or perhaps she is too tired and starved to think... I asked her to consider the bigger picture, to consider the risks, and to remember that perhaps a month or so after the surgery, she may end up in the same place as she is now: starving, unable to eat because the intestines have been clogged up again by the tumour spreading.

"What do you want me to do? Just starve to death? Send me to the hospice and wait to die?!" Mum reacted angrily. From her words, it seemed clear she misunderstands me and has not understood what hospice care means. She, and my aunts, believe I am completely against all treatments, including the NJ tube and surgery. They probably think that I want to get rid of mum as soon as I can, so that's why I'm been eagerly promoting hospice care. But I just would like mum know there is an alternative to pressing forward with treatment, to getting your body so tormented by cuts and poisoned by medicine that one by one things begin to fail. The alternative is not pretty; starving is not a pretty sight or feeling... I've seen how starving has eroded mum's body to just skin and bones, and it's scary. But what is the lesser evil, what is less torturous: starving or going through surgery, through the long period of recovery and most likely needing to starve yet again some time from now as the tumour spreads and blocks ofd more passageways in the small intestines?

I felt so wronged... "You're my mother! Why would you even think that I want to get rid of you? You think I'll be so free when you're gone?" Mum just retorted that she does not need me by her side, and that she can easily someone. That only added salt to the wound...

I truly just want her to suffer less, to not suffer needlessly and for any period of time. What is the point of living then if everyday is just waking up to suffering, sores and bearing with pain? I never said I'm opposed to the surgery, for ultimately it is her choice. As I told her, it is her body, her life. Whatever happens, she is the one who has to bear the physical pain and the mental torment that comes from feeling pain and sores almost every moment of the day. I cannot bear responsibility to decide something as important as mum's life, especially a course of intervention that could very well put mum's life at risk. "I just want to give you the bigger picture, to tell you what I know from the doctors and what they have said to me. You're my mother, I want what is best for you..."

Hope

Even in hopelessness there is hope.
It may not be hope of recovery, it may not be hope of prolonging life and taking away inevitable pain and suffering. But there can be hope of a beautiful, comfortable, dignified process to rounding up the wonderful journey of life.

I've been wanting to take mum to the Hope Cancer Foundation since I last went there over a month ago, just after my birthday. I wanted to share with mum my new found source of hope and inspiration, wanted to show her that there are many out there like her, and that she need not fear and need not be alone. But but incessant vomiting and fatigue prevented us from going there together.

I went back again today. Mum thought I was going home to rest, but I needed another opinion, especially in light of the setback of the NJ tube insertion, and the startling option of final resort with the major bypass surgery.

I saw a volunteer, a colon cancer survivor who was rescued from the brink if death, a lovely lady around mum's age with two children studying in the UK. We spoke for almost an hour and a half, talking about mum's condition, and about me.

She was more interested in me, how I am coping with all this, how I am releasing my feelings, if at all. I say I write, I write down everything in the first person, write down all my fears, joys, feelings, dreams, thoughts and emotions and experiences as I am doing now. It is my way of letting pent up emotions vent, my way of communicating with the world and "asking" for help. Because I know I cannot cope without an outlet, I know I cannot cope by bottling everything deep inside, for one day, in one way or another, a lot of it will erupt and I will be so torn and traumatised-- perhaps in the way my childhood experiences suddenly came to haunt me a decade or so later.

Mum will pass, it is a matter of time, a matter of manner. I would like her to leave this world feeling like she's really lived, like she's been touched and loved, like she has had a blessed life, despite certain hardships growing up and in this final stage of her life. Nobody can know how much longer she has, but we can try and try to much that last, or at least feel like it is lasting. I want to make her comfortable, make her close her eyes and be able to drift away in bliss and feel like "My duty is done here..."

I have to be aware, not everything will be according to plan. Who would have known a year ago she would have a spinal surgery? Who would have known a month ago she would deafened to this poor state of health on the brink of death? I can try to plan things, but I must also allow the possibility for life to take its natural course.

"Don't feel it's your responsibility for her to get better. Some people completely collapse after losing a loved one, others hate themselves or even get angry at the loved one for dying. Be aware of that..."

I have thought of that possibility, hence I am already seeking help, I am already making plans for the "hereafter". I need to live, I need to love, I need to still love life after death. For I have seen and heard about people around me descend into a depth of depression and terrible, inconsolable sadness, and I must be ever so wary. I must be vigilant.

I must be able to find life again, find a way to keep motivated, keep interested, keep me busy, so that that day when a fundamental aspect of my life, my rock and my core, disappears, I have a net to break my fall.

Hence various "projects" I've been thinking and planning in my head, all part of "Operation New Beginning". I want to bike around the island to prove that I can fulfil a lifetime dream, that I can challenge myself and live up to a personal promise. I want to go to India and/or Tibet (if allowed...) and follow do a Buddhist pilgrimage. I want to return to Lake Louise, where mum and I spent a wonderful hour paddling on the lake. I want to attend my graduation, alone if I must, for I want mum to see me at a proud moment and know that I can do what I set out to achieve. I want to qualify for the bar, work in a field of law I am passionate about (it's crossed my mind, all my accumulated experiences dealing with health care and hospital, why not loom into the field of Medical law?). I want to be with someone who loves me dearly, unconditionally, and whom I love and trust fully. I want to be there for my cat, I want to one day have children of my own! I have dreams, even though mum may not be able to see me realise all my dreams.

I may be calm now, I may be so cool and may still be able to make myself smile when I look at myself smile in the mirror. But that may all disappear, that smile may quickly, unexpected turn to a sad, howling face laden with tears and regret.

I may still be able to calmly narrate the story to people, and even comfort people, but who will comfort me? I must let someone into my life, someone I trust, someone I have for a long time confided in, even if I don't want to.

I must already prepare to accept, to let go, and eventually to heal. It is never too early to prepare for death, for the next moment may already be too late.

Chance

If there were a chance, a rare and brief chance, at easing pain and suffering, of respite before the end of everything would you take it?

Would you take it if the price was very high, if in exchange you risk your life and unbearable pain in the process?

Return

"I can't tell you when to book a ticket or when you should fly!" I said, for the n-th time. I know brother is concerned and that his concerns can only be allayed by news from me on this side of the world. But I really can't tell him, as much as I would like to, he can come back on this date and things will still be ok, and mum will still be around. Who knows that? How can I or anyone be certain of that?

Last week I spoke to him on the phone after the diagnosis that mum's vomiting is in fact related to the cancer spreading. I hinted to him, with the hope he would propose it himself, that he should come back for some time, to spend time with mum. I didn't say it, but he knew what I wanted to say: sometimes you have one chance in life, and if you miss it, you may regret it for the rest of your life. And spending time, precious, quality time with your own mother when you still have the chance is one such chance. Since then, brother's asked for (and gotten approval) an unpaid sabbatical from his work of three months, and I told him not to worry about bills and mortgage payments in the meantime, for I can take care of those. Nothing is more important right now than being there with mum at such a critical and touch-and-go period of her life...

Brother's been calling everyday, the most frequent he has ever contacted me in my entire life. I tell him what I know, and reassure him not to worry too much, and to focus on his work. I know it's hard, especially being so far away and worried sleepless, but I can only tell him things are being dealt with, and that it's best for him to return ASAP.

Problem is, my sister-in-law and nephew are still here in Taiwan, and they were planning to only go back to europe at the end of March (thus two days from now), before all this vomiting and the latest diagnosis.

This means they'll go back to Europe, and within a week or two (at most!) my nephew and sister-in-law will have to make the same long, long journey back. Not difficult for me, as I've done something as crazy before, but we're talking about a mother taking a baby who is just seven months old!

They must return to Europe, for there are some urgent matter to deal with. My nephew's vaccination is due in a few days, and my sister-in-law must start applying to renew her residence visa, or otherwise she'll have to leave the Netherlands (even being married to a local citizen!) And my brother has to arrange the house, arrange for his/my cat to be taken care of in his absence, and so many other things he has to do.

I know my brother is worried, because as far as he knows mum's doing very poorly, and he's heard it from me, and heard it from him wife, but he's not seen just how poorly mum has been doing. So naturally he's anxious and terrified, and I think most of all, of missing the opportunity to see mum and spend some time with her.
So he kept on asking me for a date to return, but I simply can't give him one. "Just deal with what you need to do, choose a date, and book a ticket. If circumstances change, then change your plans accordingly!"

What else can you do? I just find it so bizarre how some people, including my friends, just book a ticket and make plans well in advance and get so frustrated by changes in plans. Life happens, plans must adapt accordingly. What else can you do? Lament fate and the unexpected twists and turns of life and circumstances? I wanted to say to my brother "Welcome to my world! This is how my life has been for the last four years!!" For it's true. I come and go and stay without knowing when I'll come, when I'll go and how long I'll be staying. To be frank, I despise this kind of uncertainty, I really crave for stability and familiarity, crave for the ability to spend a few months, a year at a time at one place (for me that would be in Canada, with my little cat and friends...), but I've just not been able to do that. Is it by choice? Perhaps, for I can simply choose to stay put and not care about mum and just go do my own things. But I can't, I can't just "abandon" her, I can't just turn the other way and not feel at all conflicted or guilty...

So what else can you do but make plans, and wait and see. If it works out, great. If not, we can only see how things are or can be and decide accordingly when we get to a point when circumstances make us choose and make us prioritise. Not everyone (and I doubt anyone!) is free to live so meticulously and timely without the possibilities of unexpected changes occurring.

and especially in the face of the possibility of losing your mother, your remaining parent, I should hope that everyone will make changes to their plans and act accordingly.

Life choices

I somehow felt uneasy about going home to sleep last night when my aunt offered to take the night shift. The doctor always comes early for his routine visit, and I always want to be there to listen, take notes (figuratively) and ask questions if necessary. But I hadn't been home to sleep for almost a week, and was getting very tired. And I know sometimes I need to let go and just let others take over from me, or otherwise I'll over-exhaust myself.

So I went home, slept almost immediately as I got home. Even though I was in the comfort of home, away from seeing mum vomit (and away from the worst night of vomiting ever...), I slept poorly, and woke up two three times from dreams... I set the alarm for six thirty, and made a point to getting to the hospital by seven thirty.

I arrived and the doctor had already been. I missed perhaps the most important appointment of all, for the doctors had another meeting in light of mum's severe and worsening bouts of vomiting (is it still called vomiting, when there is nothing to vomit but stomach juices?). Why on the day where I happened not to be there?

The vomiting will not be helped by the insertion of an NJ feeding tube, the doctors said, for the cause of the vomiting is due to the inability for stomach fluids to escape through the other end, so instead it all comes out the other end, through the mouth. The feeding tube will only solve the issue of mum getting nutrition the "natural" way.

The alternative is a bypass surgery, which the doctors had put aside before it is a risky and perhaps not hundred percent effective solution. Further, a bypass surgery to reroute the intestines to bypass the area blocked by the growing tumour may, if effective in resolving the issue of food flowing down, will only serve its purpose for a limited time. The tumour in that region, which I saw on the MRI and endoscope images, is certain to grow and grow without chemo or radiotherapy (which if mum opts for later, will certainly make her even weaker or even kill her...).

But now the doctors came back and revives the option, and wants mum to decide. It's a tough, tough choice, and what a "great" way to start the day; a way which set a bad mood for the day and which occupied our minds.

The NJ tube is only able to resolve mum's nutritional intake, but will not be able to address the discomfort and pain from vomiting. Further, it is aesthetically displeasing, and mum was very hesitant to do it from the very start. In fact, I already bought the tube last week, and dared not show it to her, for it is very, very long, and sickening to think about it being inserted into your body all the way to the intestines.

The bypass will solve two problems, vomiting and mum's ability to eat and absorb food naturally. But the surgery i is very difficult, and may leave mum, who is already in a poor state of health, in poorer state of health. It may perhaps even kill her. And how long will the surgery allow mum to eat and drink like before? If the tumour is growing and spreading rapidly, it may could be weeks, months Before mum has to go through the same hell of vomiting and getting so very thin as she is experiencing now. When we come to that, there will be no other cure. And what is the point then of a big surgery, and weeks of recovery time that follows when at the end of the however long period, the problem returns? The surgery only deals with the symptoms of mum's current discomforts, and does not address the problem of the tumour or spreading. The tumour cannot be addressed, for it is in a region close to a lymph node, and if remove will cause extreme levels of bleeding. And sometimes, when you tamper with a tumour, it may be like opening a Pandora's Box, and cause the cancer to spread and grow even more rapidly and ferociously.

Again the choice is a matter of life and death, and more poignantly of how to die... Die from vomiting and vomiting and getting worn down mentally by having to vomit so much everyday, or die from cancer spreading after undergoing yet another surgery that will cause such trauma to mum's body and soul and leave her perhaps so terribly weak for as long as she may live?

Have we come to this now, come to weighing in the possible salvation a quick death will bring against the of pains of prolonging life and dying a painful and slow death when the cancer eats away everything? How crude and cruel it seems that is the only way that mum can leave behind all this pain, all this suffering? How meaningless life has become for her! How painful it is to see a once proud and able human being, my own mother, descend into a level of existence that is just dreading vomiting, bone sores and suffering intense hunger!

I climbed into mum's bed and held her hand. There was nothing I could say, nothing worthy of saying. What do you say to all this? What do you say to someone faced with a choice of the lesser painful way to go, when both options are so painful and so unbearable to think of?

I just held her hand. Silently, I told her I will be by her side.

Hospice agreement

I hesitated in signing the hospice care form. Not because there are certain clauses I do not fully understand (legal language in any language, even if it's supposedly my mother tongue, is hard to decipher...), but mainly because it feels so important, so (literally) life changing. (And I guess being a lawyer-in-training, I am always very careful when I come to sign documents)

I had to sign it, as the closest kin, which I found strange because mum is the one whose life is being decided. The family doctor who is in charge administering 'entry' into the palliative/hospice care programme came by and just dropped off the consent form. I was temporarily away, visiting mum's neurosurgeon, so I missed (who I believe is a) her. It was me who arranged for mum to see the family doctor, for I wanted her to fully understand the entire procedure and what hospice care entails, but somehow I have to first sign the consent form, and then they will send someone to come see mum and talk to us about the the hospice care programme.

I stared at the piece of paper, and gave it to mum to read carefully. She already has an idea, as I have been talking to her about it on and off, and in addition I gave her a number of brochures which I picked up from floor 21 to read. "This is what I am wishing for," she said. A sentence I have been hoping to hear from her loudly and clearly.

But still I felt uneasy in signing the form, and I read the piece of paper again and again. I knew what it all meant on paper, but I still had questions; questions which would only be answered if the family doctor did not come back to see and talk to us again. What reassured me was a clause which said if need be, the patient and/or relatives can opt out of the programme at any time.

I sent a text message to my brother, who was half way through his work day in Austria. Such an important decision cannot be taken lightly, and mum is not only my mother, but also that of my brother. I have been talking to him about it on the phone over the past few days, so he is aware of what mum and I have agreed to do. But still, I needed his explicit approval.

"OK" was the response that came back from my brother within a minute or so of me sending the request for his consent. It was a disappointing reply, somewhat emotionless in light of the decision that is about to be taken, but it was precise enough for the purpose I guess. An hour later, my brother texted again and asked me if mum and I were alright, especially in light of making such an important decision.

The agreement is still lying on the table, dated but still unsigned, almost ten hours after I received it and read it again and again. I don't know why I am hesitating still, for I have mum's agreement, brother's consent, and I can always choose to back out if that is mum's (or our) wish.

Just the fact that I can decide mum's course of (or, to be more precise,  termination of) treatment is daunting, and the responsibility is terribly heavy...

(animation entitled "Mama's smile" about a boy wondering why his mother is going on a long, long journey...)

Hospice care

(translation mine)

"Hoping our patient and relatives
Can have additional warmth and care at the most difficult moment,
So the person who is ill can have less pain and suffering,
So the family can have more reassurance."

What do you do?

One day, there will be a moment, when I will have to let go. Forever let go...

"There's nothing else I can do. That's all I can do..." My eyes instantly became moist.

That was my response to the question what I do with mum everyday. I rub and massage her, I hang around her, I touch her, I hold her hand. I prepare heat packs for her so she can soothe her pain and sores. I walk with her the short distance to the washroom and around the ward, which has become the extent of her world. I climb into bed with her, lie by her side, and I place my arm around her thin, bony body. I put my head against her head and close my eyes, and I imagine positive thoughts and calm, thoughts of happiness and peace can pass from my mind into hers...

What else can I do? Tell me what else I can do, and I will do it. I would do whatever over and over again if it will make mum comfortable and feel safe and loved.

It's all so very little what I do, but even very little can be so much, can mean so much. Even so very little can leave mum looking at me with moist eyes and thanking me quietly for what little I do.

I was speaking to the monk in the mountains, who I often think of turning to when I am in need of advice and inspiration. For he is wise, has the ability to see through things perhaps I have not, and he is a monk, whose opinion and outlook on life I deeply, deeply respect.

I told him everything mum has been facing, and the latest situation, told him my fears, my thoughts, my doubts. Though he said he cannot advise me on the taking of life, he mentioned that if there is an option that is less painful, that results in less suffering, and if it is mum's wish, then follow that path.

There does come a point in life when you have done everything you possibly can. "It's not giving up, because that suggests there is a choice, a choice you're not making." Yes, the reality is there is no choice. If there is a choice, it is how to die... And do we not all want the quickest and most pain-free way to go? Is that just what I want? I can only imagine that it is also what mum wants, but I have not yet had the opportunity to hear it from her clearly and loudly. I know I must make that opportunity, I know I must approach her with calm and wisdom, after going into the hospice ward earlier today and after talking to the monk.

"I feel so strange, so calm when I talk about it with my relatives. I talk as-a-matter-of-fact-ly about all this, with so little emotion. There's just this strange calm..."

Calm is an emotion too, the monk said. There have been moments when I was very afraid, I am sure there will be moments like that more, and there will be moments when I am so tranquil, so at ease. Feelings, like every situation, are just the way they are. Nothing less, nothing more. Better to deal with something as painful, as difficult as deciding the fate of someone you love so deeply with calm and wisdom than with fear, dread and confusion. Better for my mum, better for me, better for everyone.
And as the appointed "spokesperson" of my mum (even though it is a position I shun and do not wish to shoulder...), as the news breaker and news reporter for my brother, who is thousands of kilometres away, I must remain calm and collected, calm and collected so I can tell things "as they are", not "as I feel or fear they are". So far, I have been doing a "good" job of doing that. Not only must I inform, I must also reassure and calm my brother, tell him about mum's condition and diagnosis, but at the same time tell him not to worry or think too much, and reassure him that I will be the judge of when it is time to come back. It is a very stressful, very burdening task, but I must bear with it, for many people  and many emotions are resting on my interpretation and assessment of mum's situation.


 I told the monk through this entire process I am learning and experiencing the Dhamma and realising the teachings of the Buddha. "Really, what else is there to it? It's just the way it is!" I may not be a good meditator, I do not meditate everyday and I may not be able to recite sutras and retell inspirational stories of the Buddha and his disciples. But I know the basic tennets of the teachings. I know about, even though I am still learning and struggling with, birth, life and death. I know about suffering, pain, emotions, and how illusory, temporal they are. This is perhaps the greatest test of faith, the greatest test of whether I have really ingrained Buddhism and the idea of living mindfully, living peacefully, living with worry and fear into my everyday life in the face of death, in the face of losing someone I hold dear dearly to my heart...

Later on the phone, a friend of my mum's, who calls every single day to check up on her and ask how she is doing, called. I spoke to her, and told her about my day, about my visit to the hospice. She said she saw signs of this coming, but was very afraid to tell mum and especially tell me about it. "I am afraid, not so much about mum, but about you," she said, "I am afraid how you will take it all, especially when that day comes..."

I have often thought about that, and yes admittedly, I am afraid too. It has been a long, long journey that mum and I have embarked on together. Though I have not been there always, though I have not been there completely, I think I have been there at the crucial times, during the vital moments of treatments, diagnoses, and most recently post-surgery recovery and rehabilitation. It has been a long journey mum and I have been on, a journey that has lasted through my entire lifetime till now (and is still ongoing...), a journey that has been long but greatly intensified over the past three months since my return.

How does being so close to someone affect you when you lose that person? How does being there every single day for so long, hoping to make a difference, hoping to make that person get better, get well again, make you feel when at the end of the day the person will not get better but will instead leave? What does it do to your mental state of mind? How does it traumatise my thoughts, my feelings, my very being? Will all my bottled up emotions just come bursting out? Will I just collapse and be so distraught that I will lose the ability to smile and laugh and hope and dream again?

I do not know the answers to these questions... And I cannot know until that moment comes. My mum's friend is concerned about how I will cope, but my initial response is that I will cope alright, I will be fine, for I have the teachings of Buddhism inside, guiding me, enlightening me on this difficult path to facing death and loss. "Be prepared..." she told me, "You have to build a foundation in your heart for what happens..."

Am I prepared, or am I just fooling myself? Am I not preparing for what comes not with all these words, with attempts to jot down every detail, every thought, every sight and sound and (almost) every word that is spoken and heard in my life in these crucial days? Has not writing/blogging for so long not served as my therapy, my saviour, my guide and outlet? Am I just turning a blind eye and deaf ear to the dangers of emotional collapse and distress which ensues after losing someone dear I have heard about and even feared? Is it enough to dream about going away and travelling, to plan to go on a long, long bike ride to prove to myself that I can still realise my dreams after mum is gone? Is it enough consolation and does it offer enough concrete support to deal with loss by planning my own life and setting out a roadmap of what I would like to do after mum leaves my life? Is it enough to imagine being reunited with my lovely little cat, who has (despite my often absence and separation from her) been the source of many warm nights and beautiful, beautiful moments of feeling love and warmth in my heart whenever I see her? Is it enough to dream of the possibility that perhaps at the end of this difficult journey, there is someone waiting for me, waiting to shelter me and care for me as a lover, as a friend, because he now realises how hard life is, how hard life has been without me all these months?

There are a great many questions and doubts, fears and musings. So what do I do?


Just do what I have always done, do what I always have been trying to do...
Just do my best with the circumstances that are such and cannot be changed... Just do my best and keep on smiling and finding queer little hints of humour in everything, like I've so often managed to do...
For doing your best, there will be no regrets, there will be no things undone, no things unsaid.

What else can I do?
That's all I can do.

Solutions

How did I ever get get so much power (or so it feels)? When was it ever devolved to me the ability to decide what end course mum's life would take?

This is a very scary, very scary feeling, and I feel terribly uneasy. Somehow I feel like a cruel despot who does not seem to flinch to decide the life or death of the people under his care. Am I a tyrant forcing my will on mum? Am I a stubborn child, selfish little child, who is somehow wishing mum could quickly go so I am rid of this "burden" I've been carrying for so many years?

I trembled as I walked into the hospice ward, and the entire day my stomach felt so terribly upset-- which began with extreme pain in my stomach and the intense feeling like I needed to vomit.

It must be nausea and sickness from fear, nausea and sickness triggered by the reality that there is a  definitive decision that will influence the outcome (and possibly even length) of mum's final  journey. And I am charged with the burden of exploring the options and presenting them to my mum. Ultimately, of course, the decision is hers to make. But I must present them to mum, as if presenting her with a death sentence. "Lethal injection or electrocution? You choose." The outcome, the end result will be the same.

A hospice volunteer, a lady perhaps a little bit older, greeted me. I said I wanted to find out more about hospice care, and what they do on the top floor of the hospital, a place I have never dared to venture into. And I realised why today... However beautifully the brochure tried to capture it, however elegant and poetic they try to describe the 21st floor, it's still the floor built for the purpose of death and dying. (Sometime ago, I wrote a fictional piece about Floor 21 from the perspective of my alter ego, Yuri the Spacemonkey, which I never did publish.)

The hospice volunteer explained to me that there are staff who are professionally and emotionally trained for the hospice. I picked up a brochure which detailed the difference between palliative/hospice care and euthanasia. In an earlier piece last year, I confused the two, but the difference is huge. What is permissible in Taiwan, is hospice care which centres around the reduction of a patient's pain and suffering at the end of life. With the patient's consent, or if not possible, consent of the relatives under advisement of the doctors, all treatment will be terminated, and any future medical intervention is to alleviate pain and discomfort. The body will naturally weaken, deteriorate, and eventually the patient will pass away... In the local terminology, it is called "natural death" (自然死).

The patient may choose to come to hospital, but most people would prefer to be at home, something that I believe mum would also tend to side with. If at home, she said a health care professional can be on call 24/7 and come home to tend to any needs. If necessary, the patient can be transferred to hospital, but once the patient has chosen hospice care, s/he will from now on be automatically taken to the 21st floor, and bypass other wards.

I listened carefully and calmly. The lady was so very kind as I explained mum's situation. I did not have to mention that mum has cancer, for when I did mention it, she compassionately said "I know..." She must know. It is because cancer is so cruel that perhaps most of the people who she comes across are terminally-ill cancer patients."I just want to know what the options are and to tell my mother about it. I just want her to have dignity and be comfortable..." Her eyes were moist as I said those words, the words of a son who cares and loves his mother so deeply he cannot bear to see her suffer too much. Cannot bear to see her suffer, and thus would rather she die soon..?

That is the greatest dilemma, the question that weighs heavily on my mind. Of course I do not wish her to die... Of course I wish her to live a bit longer, so she can attend my graduation, so she can see me be sworn into the bar, so she can see me settle down (perhaps even get married!!) with the one person who loves me so, and whom I love more than anything in the world. Of course I wish she could see me one day have a nice job, comfortable home, perhaps come visit her with her grandchild(ren?) run around me... And I so wish I could take her travelling again, take her to places in the world she and I have talked about visiting together, but never managed to. But the reality is mum may not have the time or energy to do all that. Mum may not have the fortune or opportunity to experience what I would so like to share with her... Share with her m dreams, my aspirations, my wishes and desires.

I left the hospice with some brochures and information. I cannot decide this all, I will not take the responsibility to decide this all, for this is mum's life, mum's choice, though I do know (yet I still must definitively confirm) that her wish is close to mine. This is yet another way my mother and I are blessed, for we see eye to eye in a lot of things, even those that many do not dare to talk about or decide on. I went back to mum's ward, and asked the nurse to make an appointment with the hospice care doctor tomorrow. S/he can come to mum's room and talk to her in person, and my hope is that the hospice care doctor can come before we decide on whether to insert the  nose feeding tube. For it is all related, all connected with life and the decision on how to proceed from here with dignity and grace.

"Stay with her, there is nothing more you can give her..." the lady told me. Then she told me something I have till now not really done, but did cross my mind, even just a few hours earlier before my mum's sister came to visit.  "Take care of her clothes and her hair. When she gets out of bed, you might want to comb it a bit, or make sure her clothes are neat and that she is presentable. And when visitors come, you could put on a bit of make up, lipstick to give her more liveliness." I haven't done much in that department because it's a bit embarrassing, but occasionally I do remind mum about it and  to do it herself. And this reminder made me think: Oh, why didn't I do this before? But now I know...

Now I know even more ways to make mum comfortable and look beautiful again. Even in this final stage, even at a journey's end.

Journey's end

Is there anything one could wish for than a beautiful ending?

Is there anything more beautiful than a dignified end surrounded by loved ones?

A whole lifetime of life... how do you make you that it does not become overshadowed by unbearable pain and untold suffering?

Those are the questions I have been asking myself, and asking others around mum. With mum's life signs fading, with her health and body gradually descending into a sorry and uncontrollable state of dilapidation, there are few things we as loved ones can manage or seek to change. But we can at least plan for an outcome that will hopefully defy all convention, and that will turn a solemn and sad final act into an experience, into a process, of beauty and dignity.

This is where the objectives of Operation Eternal Happiness and Operation Reunion converge...

Thought

i am killing my mother...

Dream

Does anything have to make sense? Do images in my mind need to connect? Am I insane?

Falling. Falling. Falling. Bed. Rush of water. Mum. Pain. Anger. Lump of cells. Blood. More Blood. Crying. Needles. Frowning face. Agony. Pain. Stomach grumbling. Doctors. Hospital bed. Empty. Empty. Machine Beeping. Beeping. Beeping...

Twist in the tale

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"I won't live to see you succeed..." mum said, which attracted a scolding from my aunt.

I looked at mum, and there was an emptiness in her eyes, a blank expression on her face. In her eyes there was a hollow void, filled with regret, perhaps, over things that have not happened yet, over things nobody has any way of knowing how they will happen. I laughed and joked that I will go study hard now and quickly start my career as a successful lawyer! "So you can still see me succeed!"

Though I was laughing and speaking in a light tone, it was not entirely a joke. I know one day, perhaps not tomorrow, perhaps not next year, I will be what I want to be, and I will find a calling in life, and live and work with passion. But right now, my calling is being at mum's side on this difficult journey. Success is not necessarily always measured by the number of years you have worked or the number of degrees you have earned.

I was not here when the doctor visited today and broke the news, so everything that follows is based on second hand information. My aunt (mum's brother's wife) told me that doctor's assessment goes against a bypass surgery to reroute mum's duodenum to the stomach (bypassing the tumour growing there...). It probably won't be effective, for the food may just quickly pass through the body and leave through the intestines before being absorbed. Why go through pain and recovery of a major operation if that may be the outcome?

An alternative may be to surgically insert a feeding tube into the intestines and feed her liquids from now on. The tumour cannot be removed, for it has become advanced and is spreading to even the pancreas, and the large and small intestines (according to my aunt).

I still need to speak to the surgeon myself and hear the diagnosis and proposed plan of treatment from him and his team. But it sounds as if there are basically two choices: to proceed with a procedure and install and feeding tube to minimally sustain mum's life until cancer eventually takes her away, or to just go home and let things be. The ultimate outcome will be the same in any course of action: death. But one may be less torturous (I'm not sure) and less unpredictable (again I'm not sure... Who is ever certain with death?) than the other.

As far as I know, mum's initial reaction to the feeding tube is that it robs her of dignity of life, and she feels ashamed of having something installed in her nostril on a permanent basis... And if she is from now on to be fed through a tube, it is just to sustain her life for a certain period of time, and there is no guarantee that she will have any strength to continue to fight the spread of cancer. What could be a worse form of dying than cancer destroying every single organ in your body and consciously watching everything shut down one by one? Mum's body may be weak, but her mind is still clear and strong, and her pride I feel will be so tortured and her dignity so shamed if she were to rot away and be eaten from the inside by cancer...

And the alternative, of no treatment... Of letting mum "starve" in a way, is that better? How painful is it to starve? What are the complications of going hungry and not getting enough nutrients for the body to work, as she has been experiencing for the last three weeks? Is this "better" and less painful than the pain of cancer eating your body and soul?

I do not know, I simply do not know... I know too little about the medical facts and about the consequences of either courses of action to know what is better or what is best! All I know is I know mum would want the least painful option, one that would not prolong her suffering for much longer, for she is simply too tired, so very, very tired....

And I am getting tired too. Tired of set backs, tired of the unknowns and twists and turns, and so very afraid that I may have to shoulder a great responsibility that of shaping a decision that may heavily affect mum's course of life and cause her unnecessary prolonged pain and suffering...

I am again so very afraid...

Operation Mumories

When I was at the temple today, I saw a portrait of a middle aged lady at the front of an altar. In front of the portrait was an urn, and before the urn was a great offering of food and fruits and paper money.

Momentarily, my eyes played tricks on me and I thought I saw mum in the portrait. When is it my turn to stand there again and hold an incense stick and bow before mum's portrait? How will I be feeling? Who will be with me to comfort me? How grim the thoughts....! but death has been on my mind a lot these days, perhaps too much!

The idea crossed my mind before, and I have at times imagined it, thought about it, and let my imagination run wild as I daydream about it... "It" being mum's final farewell.

I don't want it to be a sad and solemn affair. I want it to be a celebration of mum's life, with pictures and sounds and songs. My brother's mother-in-law and her sisters and I got talking. They know of this lady who passed away (also cancer...) and her funeral was not at all sad. It was very touching, very beautiful and dignified. The children hosted the event, instead of having a ceremony master who did all the talking using a very impersonal and scripted speech (as was the case with my dad...). The lady's funeral was the kind of farewell I have been dreaming of!

I know I can do a good job and put together a very touching "show". I did it with my brother's wedding, and recently I put together a bunch of pictures in a scrapbook to celebrate my ex's life and our relationship together. I know they both touched people, and I hope I can also do the same with mum's memories.

But will people be receptive to it my idea? The lady who passed away actually worked on the project herself with her children, for towards the end she came to embrace death and also knew when it was time she wanted to "go" beautifully and memorably. Would mum be as welcoming of the idea? I am afraid if I mention something like this she may get the wrong idea that I'm plotting her death and planning for her funeral already.

And I'm not sure whether brother and others who have been important in mum's life will warm up to an "unconventional" send off, for I need their support and input if I am going to pull this "show" off.

Just because I like the idea, just because I see my own funeral as a last(ing) opportunity to touch people's hearts and to inspire people with, does not mean everyone else shares that open-mindedness to death and dying...

For now, this idea is still a work in progress I label "Operation Mumories" (yes, there are many operations ongoing, and I seem to be coming up with them to give myself something to do and something to distract from everything else...) . It will be an attempt to capture mum's life and experiences, mum's sacrifices and devotion, mum's love and care and remind people of who she is and why we care and love her.

Whether this crazy idea will one day become realised remains yet to be seen...

Words of comfort

What would you do to prove how much you love someone?

How much of yourself would you give when there may not be much time left?

How brave and patient can you be?

These are questions that fill my mind during my waking moments, and which permeate my dreams when I close my eyes to rest my tired body and try to calm my sad, sad soul these days.

A friend of mine, a "soulmate" of sorts as we have undergone similar experiences and fears with respects to losing our mums to cancer, wrote me a long email today. She read my recent blog entries, and said she felt/feels what I feel now. That deep sense of fear, deep sense of frustration and panic, the longing to hide from the rest of the world, and the urge to cry and cry... She went through all that, she is going through much of that still, almost a year after her mum left this world...

I was touched, very touched, by her words and encouragements. They are a welcome source of support from afar at a time when I need it most, at a time when I am facing perhaps the most challenging test of my life (yet?), of anyone's life. Really, what could be more frightening, more traumatising, more unbearable than losing the one person in your life who has been there since your birth?

My friend knows how I feel, and I mean no disrespect by sharing her words to me here (sorry, I know you wrote these words privately to me, but they are very beautifully written and very meaningful...). Her words come from the heart, from the brave and partly broken heart of another who has had to live and fight alongside a cancer warrior. Her words best describe themselves:

"... in the end, this kind of situation is overwhelming. [...] But has it been planned, and so has it to be. Try to provide your mum with peace, and to expulse your pain whenever you can. I wish I could help more. [...]

There is no magic recipe how to handle the situation, in fact. You will suffer. You will cry. You will hate. You will criticize yourself.

But in the end, you will have to admit you have always done what was expected from you, and even more. You gave yourself to your mum's condition. This is an amazing proof of devotion to your mum, and a precious gift you made her.

Cry, write, shout, pray, as the illness is a vicious seed that comes into the human body and spreads relentlessly.
Be sure that your parents are incredibly proud to have a son like you, your friends are proud and amazed by the friend you are, and that you will always have a friend to support and encourage you."

On mum being angry and irritable, especially as her illness progresses and as the chances of a full recovery of health and life seen slim, my friend had this to say:

"I understood she had nothing against me, but that this was more [...] coming from the deep of her soul, trying to say "I love you so much, and I am sorry, I am sorry I have to go. Do not blame me for that. I am scared too. Keep being here for me."

An empty elevator on the 11th floor...

There is a reason why my blog is updated often daily these days. Strangely, and to put it crudely, death is fascinating, inspirational, and experiencing illness (as a bystander...) draws out dark energies of negativity as well as positive energies of creativity I have rarely experienced before. And instead of breaking down and crying and lamenting my fate (I do it too sometimes, I know...), I have found I can use that time and energy to write, write, write. For myself, for mum, and for the world to see and share.

Death, the slow and forceful approach of it, makes you realise again and again "life is only so much!" How sad it is that so many of us live with regret, so many of us live with hate and anger brewing in our hearts (and I am no less innocent of these ills...)! When all is said and done, what could be worse than to let the chance to love and care for someone you love deeply slip away? What could be worse than turning away from someone you love at a time of despair and need? That's why I am here, gritting my teeth if I must, crying inside if I can, but standing by my mother's side as she prepares for journey's end.

My blog is my dearest source of outlet these days, a dark hole where I can vent all my frustrations and anger and turn to and not be afraid of rejection. There are strong emotions I cannot express in front of my mum, there are feelings I cannot talk to anyone about. But I can write about them, right here, to share with the world and share with unexpected readers who may be facing similar difficulties and having similar feelings.

I know there will be times when I am so consumed by despair I want to hide and hide... I know there will be times when I will quietly cry and wonder why this is all happening... There are times when I wonder why there is no one next to me who can hold me, kiss me and tell me softly "It'll be all alright..."

But I am brave, I am strong, I have been through so much over the past few years. And I can get through this, one day at a time...

Dream

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I saw death again, a blurred vision, a vague glimpse, but undoubtedly it was death... And it left me, in the dream itself, feeling so empty, so very traumatised and lonely inside? Is this how I will feel at the end of it all? Empty, indescribably empty and traumatised like a shellshocked soldier with a wounded soul that is so hard to make whole again?

I was woken up by the sound of mum trying to open her water bottle, and trying hard to get up from lying down.

I slept for a hour or so so far.

Remaining affairs

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"I want to eat vegetables," mum said, "I've not eaten for a long time." I told her she can chew the vegetables but would then have to spit it out again. Otherwise the food remains will collect in her stomach and come pouring out like everything else she ingests. It was not her only request, for earlier she asked my aunt (mum's youngest sister) who came up a day ago to help out, to cook some fresh fish soup.

Mum looked a little better (or did I feel that way because I heard my aunt say it to mum early in the morning...?) and I suggested to go to the bank. She has been telling me there are some affairs she needs to take care of, things that have been on her mind for some time, and caused her so restlessness.

We left the apartment and suddenly mum turned to me and told me to go back upstairs to pick up some documents. "I need your bank details..."

I protested when I realised one of the reasons why she wanted to go to the bank. She wanted to transfer some money to me, just in case. I protested again and said I have more than enough already, and said she should keep whatever she has in case she needs it for treatment and whatnot. But she was getting irritated and having pains from standing around for too long.

"It is her wish..." I thought to myself as I went upstairs to collect the documents she needed. Her wish, just as she wished to eat vegetables and have fish soup. Who am I to protest against her wish? If she feels happy, if it makes her happy, why make a fuss?
Who am I to stop a mother wanting to make sure that when she is no longer around, her child will at least for some time have some means to live on?

We went to the bank, a branch of the same bank where dad served his entire working life, which over three decades. Every time, it feels so heart warming going to that bank, and everytime I'd look around and the staff (especially the older ones) and wonder whether they knew dad. Today it crossed my mind that in a few years, the older staff will have retired and gone, and gradually no body will have known dad or known that dad worked here before...

Mum sat down as I filled in the necessary forms to do what she wanted. It felt so unreal, for mum was so close by, yet unable to even properly lift a pen to deal with very personal affairs. She looked so tired, even though most of the time she was sitting down. The bank clerk was very patient and kind, even when it took me a really long time to fill in necessary forms (because my writing skills are very poor...). Occasionally I'd glance up to keep an eye on mum, who sat a few steps away and looked like she was in a lot of discomfort.

We were only out for about forty minutes or so, and we took the taxi there and back so mum did not do much walking. But she said she felt exhausted, so we had to cancel a planned visit to another bank, where in a safe she had deposited her valuables and her will (I know it's there, I went with her to put it there last year, but I don't know what it says...) Events in the past year or so, especially with the birth of her grandchild, has made her want to review her will. That must wait another time I guess. But deep down I was saddened that mum did not have the chance (or energy) to deal with this very important task today, for I know making changes to her will has been on her mind for a while. Especially with her health so fragile and (to be blunt...) death seemingly looming so close by, I think mum would feel more at ease if things could be dealt with beforehand. She later told me, if necessary I can open the safety deposit box on her behalf with her ID card and seal.

"You'll have to tell me someday about your bank accounts and such..." I said to mum. Not that I'm vying for what assets she has, but really it's a confusing mess as mum has accounts here and there and some shares in this and that company, and I've not really been keeping track. From the experience of dad's passing, I remember it's a lot of hassle to close down different accounts and sell shares, and mum did it most of the work. When the day comes, most likely I'll be the one who has to deal with a lot of the financial details, and it's a lot of work.

I too felt exhausted from such a short trip to the bank, strangely. I know partly it's because I've been sleeping terribly and am almost nightly disturbed by dreams and hauntings of death. But truth be told, it's tiring enough to see mum weaken day by day, it's tiring enough to have to be constantly vigilant and prepared to head into hospital at a moment's notice... But, as much as I know it's important to be prepared, the "after-affairs" (affairs after mum's passing away...) are heavy and very hard to think about and deal with now.

Nothing more, nothing less

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Mum is visibly weaker than I have ever seen her before, and we have together gone through so many sessions of chemo and radiotherapy over the past few years. Everyday, she lies there so tired and so frail in her bed, unable and somewhat unwilling to get up. She often whispers, for she is so weak her voice is but a weak whisper now, "I've never experienced anything like this in my whole life..."

When I massage her, I feel just bone and skin. Just bone and skin! I try to hide my feelings seeing her so frail and so thin by smiling as I touch her body, as I massage her sore bones and strike her aching shoulders and hips. It's a very haunting to feel the sharp bones of mum's shoulder blades and pelvis so 'visible' to the touch. It's very haunting to grab mum's arms and legs and feel how terribly fragile and thin they have become, making me wonder whether she will gain her muscle strength back again... Again, the haunting image of prisoners confined in a concentration camp comes to mind...

Today my cousin, who is a trained nurse, came to visit. She told me afterwards when we were alone that she was so shocked to see how thin mum has gotten.

"It's the look of an ill person," she said, telling me how she's seen that look on the bodies and faces of cancer patients. "The tumour will absorb all the nutrients and feed on her body. You can see it in the way how her cheeks have sunk so much. It's the sick look."

I thought for a while that her dramatic weight loss was because she's not been able to eat much (if at all!) for the past three weeks. But now I realise, not only that, but the cancer is eating her from the inside, getting bigger and stronger by draining her own body's reserves.

Later in the afternoon, the monk in the mountains called. It's been a while since I last spoke to him, partly because I know he is going through some emotional trouble himself. And literally nowadays, " no news is good news"...

He was very convened how I've been and thought my break in communisation was because I'd gone off to do my round-the-island bike tour. I wanted to when I last spoke to him about three weeks ago (time passes so gruellingly slow, yet weeks go by so miraculously quick...), but because of mum's ever deteriorating condition, the furthest I cycled to was over the city boundaries some 20 km away.

"I've not been well..." I admitted. A rare admission, as I normally don't like to complain (that's perhaps ironic as this blog is perhaps blighted with rants and complaints!!). But really, the circumstances are such that my mental and physical energies are at their lowest I have ever felt, ever.

I describes mum's condition, and how she's lost so much weight, including the latest diagnosis of cancer growing in her intestines. "It's testing..." I said. And throughout our conversation I must have used the word "testing" a dozen times. But that is perhaps the best word I can think of. Testing of my patience, testing of my sanity, testing of my forbearance, testing of my health, testing of my faith in the teachings and ways of the Dhamma...

I narrated how frustrated and angry i feel at times, and how i feel guilty for feeling that way, and he assured me it is the most normal reaction (even a self-help guide to caregiving my ex kindly sent me said so...). For such a long time, almost three months now, I've had to deal with mum's deteriorating health almost completely alone, and there does not seem to be any signs of improvement, only deterioration.

The monk said frankly, even for him when he was (and in some ways still is) dealing with the decline and eventual death of his disciple, he knew all about letting go, all about attachments and suffering, but when it comes to you, when you are faced with real, hard emotions and feelings you cannot but feel overwhelmed and helpless.

Death is hard, that cannot be forgotten, but perhaps harder still for the loved one to process is the process of seeing someone you love dearly slowly, painfully, excruciatingly, uncontrollably dying. The sense of helplessness, the despair, the frustration and fears that are coupled with someone in my circumstances are impossible to imagine, and harder even to bear. "It's like watching someone trapped in a burn house and you're unable to save him..."

I described my tiredness, my utter exhaustion and sense of deep, deep despair. "I'm doing what I can, but feel it's far too little. But really what else can I do?"

"Keep on doing what you do, and I'm sure it gives your mother great comfort..." I struggled to listen to those words, because they are so true. I know what I do, the massages, preparing heat packs, making her liquid foods and juices, rubbing her numb feet and hands, they mean so precious little, but I know, and I can see, they give mum such great comfort and reassurance. "Your way is enough, it's what you can do and nothing more or less."

Let there be sound!

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I've been wanting to buy mum a new hi-fi system since her old one has become almost inoperable after just three, four years. It's the "curse" of living on a tropical island with high humidity, and being where our house is there is an added "curse" of being right at the foothills of volcanoes that emit sulphuric gases, which can get into electronic systems and erode electronic circuits.

Every time I say I want to take her to see a sound system, she says "later" or "some other day". But in her state of health, it's very unlikely she'll be able to go anywhere far, let alone be able to walk around the stores and compare prices. So yesterday I went for my evening "time alone" walk and went into two stores to look at hifi systems.

Like me, mum detests anything "Made in China", so there are (sadly) not many options. Even renowned and trusted brands like Sony have downgraded their products to be made in the "bad country"... There are however two devices, both by JVC, which are made in Malaysia, though the price tag is a bit steeper. That's the price you pay for being politically conscious in your purchases, and it's something I rarely compromise on (sometimes there's just no other choice!) So I took some brochures and came home to show mum and see which one she likes more, with the plan of buying one one of these days.

She looked the brochures for a while, then weakly said: "I may not have use for it for long..." she whispered, "Take... take it with you to Canada after I am gone."

I hid the pain of hearing those words with a smile. "nonsense! Don't talk like that!". But I knew why she was talking like that. Deep down, I knew and feared that kind of talk, because it's uncomfortably close to the truth, to reality.

One day when mum has gone, all the things I bought for her or am still planning to get her will be left behind...

And left behind will be memories of how I've tried to make the final leg of her journey as comfortable and carefree as possible. Both the material things and memories will be mine to keep. But only the memories of all that is happening in this difficult and testing period and memories of my sweet, little gestures and attempts to make mum happy will be mine to keep forever and forever...