Failed

The passageway to the intestines have become too closed off by the tumour.

The NJ tube could only be extended as far as the narrowing of the opening of the intestine, for even the thin tube cannot pass through. There is a slight chance that fluids can be directed into the intestines, and that mum can at least absorb some nutrients. Some is better than none.

The only positive note is that the NJ tube can direct the stomach fluids out of the stomach, so at least that should prevent mum from throwing up so much.

Mum came back to her room and looked so sad, so disparaged, so very sad like she could burst out crying...

I wish I could comfort her, reassure her, take away and destroy all her fears and frustrations...

Waiting...

Almost one and a half hours since mum entered the room. The assistant said one hour at most.

The wait is gruesomely long...

I hope mum is alright...

I hope my dear, brave mum is alright...

Fluoroscopy

Mum looked so forlorn and so afraid when I left her. I patted her legs, and before the assistant covered her body with a blanket, I held her hand. Tightly, reassuringly, warmly, not letting go, even though her grip was so weak it was almost non-existent.

I didn't say anything, for the assistant was explaining the procedure and trying to calm mum down. I would have said: "Hang on there, I'll be right outside! I'm here with you." I can only hope the grip of my hand, and the smile I flashed her told her so much.

I could have missed her completely before she went into the fluoroscopy room. I was running an errand and went to the post office to mail mum's doctor's notes to my sister-in-law, just in case she or my brother would need it. When I returned to mum's room, the bed was gone, the room was empty. I was afraid of not being there before mum conducted the NJ tube insertion procedure. I imagined that mum would be frightened, for this is a resort she never did really warm up to, and I wanted to be by her side. The nurse who tends to her confirmed that mum had already gone down to have the tube inserted.

I ran down the stairs, 9 floors down to the second floor. Waiting for the lift, and most likely needing to stop on every floor, would have been excruciatingly long.

Is there such a thing as fate? Were things somehow destined to be, for is arcane knowledge and aimless wanderings around the hospital not so aimless and not so arcane after all? I had done some prior research online about how an NJ tube works and how it is inserted. I know from my browsings that a fluoroscopy (sort of xray) is needed to ensure that the long, long tubing is directed into the correct passage once it goes down the nostril. One wrong move, and it could go into the air duct, and down into the lungs, causing severe damage. And by pure coincidence, the other night as I took some time alone to walk around a bit after dinner, I wandered into the area of the hospital where fluoroscopy is conducted. Coincidence? Or meant to be?

Mum is inside now, hard to imagine that she and I are separates by a mere few metres. What anxieties is she feeling? What discomforts? What sense of loss of dignity and powerlessness as she watches with wide open eyes as a very invasive and long tube is inserted down her nose?
I cannot imagine her fears, I cannot imagine how she is feeling. I cannot imagine how I would be feeling. I cannot imagine how I could comfort her, reassure her afterwards, when I see her with a tube hanging out of her nostril, that things are still normal. I cannot know how she will feel, how I will feel. Such fears, such unknown fears, such crippling fears!

We had a hectic morning. The main Colonrectal surgeon came early, around sevenish, and I had a chance to ask him about mum's condition in more detail. He said he fears that the NJ tube may not be able to pass through the blockage, for the tumour may have completely blocked off the opening into the intestines. This may explain mum's severe, and increasingly severe, vomiting of stomach fluids, because there may simply be no way down.

Surgery is a possibility, but one the surgeon wants mum and the relatives to decide. He cannot and did not say we have to do it. He was honest and frank in the way he presented the facts and risks, like a true, moral doctor would. I know that the situation inside is not pleasant, that there are multiple growths in the intestines and colon even, from the images I've seen. But the doctor cannot say for sure how (bad?) the situation is until they go inside. It could be that the linings of the intestines are festering with cancerous cells, which will make healing after surgery very difficult, if not impossible. The surgery may not kill mum, even in her state of health, but the question is whether mum can survive the recovery and rehabilitation after surgery. Just the spinal surgery took her close to two months to recover (though, it is hard to tell, for in the mean time, she began CyberKnife and also began to vomit...).
How would an intestinal bypass affect her body and overall wellbeing, both physical and mental?

My aunts (mum's youngest sister and mum's first brother's wife) were outside the fluoroscopy room, and another aunt (mum's second brother's wife) and a friend of mum's have arrived since mum entered.

Five people all waiting, all hoping, all ready to rally around mum as soon as she exits from this very invasive procedure.

Around this brave heroine, who fights and struggles, who preserves and rarely flinches or cries, there is a group of loved ones and precious supporters who will be there till the end...

Eva Air joins *Alliance!

Mum switched on the news early in the morning. It's good to fill the room with some other voice than just silence, which is often the language between us now.

I first heard talk about Eva Air, perhaps my favourite airline, so I turned to watch the screen. And then there was a shot of a bunch of officials stranding in front of a Star Alliance sign. "Eva accepted as Star Alliance member"!

I was suddenly elated! I've been anticipating this day when about a year ago news of talks between the airline and my alliance were leaked. I fly (almost) exclusively Star if given the choice (I'm loyal and don't like to "cheat"!). I'd even pay a bit extra and transfer two, three times if I have to just to fly a Star Alliance member to collect points. So for three years running I've attained Gold Member status, which gives me upgrades and also extra allowance and priority services. "I've earned it" as the *Alliance ad says!

I sat next to mum and was so excited! I've not been excited about anything much for a long time! "This means I can come back here more often! Direct flights and earn points!"

Mum didn't say anything. She had just vomited. I felt somewhat bad and out of place getting so excited by something as airline miles, when half an hour ago the doctor came in and talked to us about the big decision. And I was getting excited about flying and collecting miles and Gold Status!

I guess you need to distract yourself in the worst of times. You need to find something to make you feel excited, feel passionate and alive again, even if the one next to you looks and feels so tired and lethargic.

Just because we're facing a stark decision, a decision of life and quality of life, I still need to find reasons to smile and feel like an excited child again!

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.

NG

It was close to one in the morning. The nurse came back with the night shift doctor after I called her and told her about mum's latest vomiting session. Half a bag-ful of stomach juices. The doctor estimates it is about 300ml. Third time since around eight at night, sixth time Since the start of day. The latest time, Mum just kept on vomiting, vomiting, vomiting for around a minute. My heart kept on breaking, breaking, breaking...

The doctor suggested Inserting a tube to extract excess stomach fluids. Not the NJ proposed earlier, but an NG tube, nasogastric tube, which extends to the stomach and either with the aid of gravity or with the aid a pump can draw out excess fluids that otherwise would come out through the oesophagus and the mouth.

"No, no, I don't want [to] insert the tube! No... Too painful..."

Mum's answer was clear, and the nurse and doctor both agreed it may be uncomfortable and "in the way". Of course it would be! something is going through your nostril and down into the stomach! "But it's what I recommend if you keep on vomiting," the doctor said.

Mum looked so drained, so tormented by her body and the uncontrollable vomiting that has disturbed her sleep for so many nights and seems to e getting worse every night. She was curled up again in a foetal position that even for me, being very flexible and soft-boned, looks very uncomfortable. She was displaying a sign of helplessness, of fear, of dread, as if she wanted to be shielded away from everything that hurts, everything that causes her more suffering, more pain!

I recommended her to sit up and try to sleep on a chair, so that perhaps the stomach fluids won't so easily flow up and escape through the mouth.

I held her hands and massaged them... Silently, I hoped and prayed as I held her hands, her pain, her suffering could be temporarily relieved...

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.

Room 1

Mum was transferred to Room 1 of Ward 114 around five days (days go by one after another, I lose track of what day it was/is...). It's a lovely and bright room, with light green curtains, a nice view of mountains and the river in the distance. The view is particularly stunning at sunset.

The night before and yesterday, mum was severely tortured by vomiting. Yesterday was perhaps the worst of all, for she threw up no less than eight times throughout the night, every half an hour or so, she really did not get to sleep much. Last night was also the night mum told me to go home to sleep, and my aunt took over the night shift, for I've not slept at home for over a week.

Today I heard her say perhaps there's something "wrong" with the room. "Why only at night do I vomit so much?" it's true, during the day, she doesn't really vomit, perhaps one or two times at most. But as night falls, the frequency and quantity of vomit increases.

I turned the lights completely off the first night we moved into the new room. Mum said she hardly slept for she was scared of "things". The second night I left a light on in the far corner, and have been doing that for several nights. Vomiting go worse the night before last, and last night was the worse night she ever had, vomiting at eight times or so... I wonder what tonight will be?

Mum requested a room change. I don't know whether to laugh or cry. She feels the room is "bad" for her, and that something is bothering her and making her condition worse at night. Whether that's true or not, whether I believe it or not, I told her not to think of such stuff, not to worry about unnecessary things that cause unnecessary her worry and fear. Over this issue, we came so close to another argument again. I just let things go, for if she wants to change rooms, if it'll make her feel better, than why not?

It's just I feel bad, because i was the one who more or less pushed mum into taking this particular room, for we had been waiting several days before moving here, and were placed in a shared room before. For about three nights in that two bed-room, mum dared not go to the washroom at night, because she was afraid of waking up the neighbour (who suffers from anxiety and wakes up from the slightest sound, not to mention the noise of the washroom door opening and the flushing of the toilet...) So at the first instance of a single room freeing up in a neighbouring ward, I jumped at the opportunity, even though mum wanted to wait a bit for some reason to be in the same ward as her brother. But I kept on saying she can rest better and have more privacy and need no longer fear waking someone up whenever she so much as coughs or turns around in bed...

And look at us now... Moved into a room where she believes is "unclean" (Taiwanese euphemism for haunted or possessed by a bad spirit...), and we have to go through the trouble of moving elsewhere again...

If it's true, this particular room is "bad" (for mum...) then I feel terribly guilty. Have I again being too pushy and trying to get my own way without respecting her wish and her comfort levels? Am I again being too insensitive to her desires and needs as a very ill and sensitive person?

I hope we can move again, and that it will be a cleaner room, so mum can rest peacefully and be free from any "disturbances"...

Eruption

"Stop pestering me! Stop lecturing me! I'm already so ill, stop lecturing me!"

My heart broke again, not from helplessly seeing her suffer and be in pain, but realising that I am causing her pain. It feels so hurt hearing mum's raised voice and facial expression as if she were about to burst into tears. Not only cancer and her vomiting, not only her mangled thin body and uncontrollable bouts of vomiting is torturing her. I am tormenting her too, I am perhaps making her worse rather than better... Am I a source of her suffering, a reason why she lies there with eyes wide open and is unable to sleep, despite having not slept properly for two days?

The incident, so small and trivial if I think about it, began because she complained of pains. I asked her why she didn't say anything to the doctor who came to visit earlier, why she did not ask for medication to control the pain. It's not the first time, for she is often in discomfort and in pain, and yet when the doctor comes, she doesn't say anything. Only later does she complain of pain and sores.

I can only do so much by massaging her and giving her heat packs, but the doctor can prescribe medicine to soothe the pain.

"Didn't want to ask the doctor for help because the doctor seems so busy...."
"The pain just comes and goes..."

I really cannot understand why she must put up with pain for any period of time. At night, she'd rather wobble unstably to the washroom by herself and risk falling and breaking her bones(or worse!) than wake me up to help her.

Always so considerate of other people, always thinking of others, which shows how soft-hearted and sympathetic ahe is, and yet in the process she swallows all the pain and displeasure inside... (sound familiar? Like mother, like son?)

It infuriates me, a lot, more because I've told her again and again to speak up when she needs help, to talk to the doctors when she does not fully understaffed something... And it hurts me to see her have to suffer unnecessarily, when sometimes all she has to do is ask for help!

I know, I am rude, I am sometimes very impatient and get angry and ugly when I am upset. I know I must control my tempers and be more caring, more bearing... But I just wish mum could ask for help more... Otherwise, what is the point of me being here, watching over her twenty hours a day?

My aunt (mum's youngest sister, bless her!) came to talk to me and cheer me up. She knows well the situation... Mum and I are very alike, and neither wants the other to hurt or be burdened much, but then sometimes conflicts arise as a result...

"Cheer up! We must be more happy and joyous, otherwise she'll feel like everything is so terrible and that she's dragging us all down because she's ill..."

I know... It's hard being ill, it's perhaps the worse possible thing that can happen to a healthy person. Being ill can really erode your self-confidence, your self-worth and dignity, it can rob you of independence and beauty, can cause you to be so mentally exhausted and anguished... And it is up to us, the family, the caregivers, to make her feel loved and cared for, and not to give her more stress, more cause for worry!

Dream

Sometime ago, just after my birthday, my ex wrote to me saying how much he loves me, has always loved me, and hinting he would like to be with me. Losing me would cause him great regret. And yet as far as I know, he's in a relationship, which started and got even more heated as soon as I left...

In my dream, I saw him again after so many months of separation. I went to see him, with a heart full of hope, with so much longing to rekindle what passion there was between us.

Yet he turned to me and said: " I've already moved on!" How heartbroken, again, I felt. He tells me one thing, gets my hopes up, and then when I am not around, is doing another. How could I trust him? How can I believe his word?  So it was all a ruse. A plan to get to me, and I fell for it...

How hurt I was in the dream, which woke me up at two in the morning.



How close to reality is my dream? I don't know, but I am so very afraid...

I'mnot God

For my birthday, my ex gave me a wonderful book titled "Passages in Caregiving". It details stories abd experiences of people whose lives have been transformed by the illness of a loved one.

Coping with calm and wisdom is key, and when suddenly turned into a "caregiver" go through a myriad of fear, anxiety, guilt and the false belief that we can be God and fix everything. But the truth is, caring for a loved one with a debilitating and terminal illness is exhausting, draining of the mind and body. And we need to reach out for help, reach for professional guidance, reach out for emotional support from friends and family, and we need to face the reality that our loved may not get better, may not recover her/his health, and will definitely leave one day on terms we least desire or expect.

A lot of what is discussed i have encountered and am going through right now. And the book is a constant reminder that I am doing the best I can, I really am pushing myself and need to once in a while give myself (and even my mother!) a break from this all. I need to still have my dreams, I need to still pursue my hopes and realise my goals. I still need to eat, rest and take care of myself, because though I may not be able to change mum's health or reverse her inevitable decline toward death, I can saw myself from falling ill, I can build on my dreams and my interests, I can connect with those who are dear in my life, and I can prepare myself for life and living after death...

Neurosurgeon

I've always a good feeling about him, ever since I first met him around three months ago. He is very courteous and caring, and has a nice smile. Some say he looks a lot like me, tall, thin, perhaps a bit nerdy-looking, and is perhaps only a few years older than me. Mum even says he asks about me when I am not with her during follow up appointments.

Mum made an appointment with the young neurosurgeon about two weeks ago, a follow up to see how her spine is recovering. A the time mum was severely vomiting already, and the neurosurgeon was very concerned, even though it is not related to his field of practice. He said he would do anything he can to get mum into hospital, even have mum admitted into her ward if necessary just to give her IV drips. It wasn't necessary, but he offered the help, and that was enough to touch mum's heart again.

As mum was in hospital already and too weak to go downstairs to the clinic to make her appointment with the neurosurgeon, she asked me to go on her behalf. "Please thank him for everything he's done for me. The surgery was beautiful and I am very happy..."

I went to see him at the allotted time, and passed on my message. "Where is she? I'll go see her when I'm done with my consultation hours."

And true to his word, two hours or so later he dropped by. Mum was surprised and delighted to see him, and immediately got up from lying down. They chatted for a good while, mum narrated her story (ordeal...) since she last saw him, and he listened patiently.

"Thank you so much for everything you've done. The surgery was very well done, and I am so fortunate to be under your care..."

The surgeon was embarrassed mum kept thanking him, but it really came from her heart. She says she has been so blessed by this neurosurgeon who, when mum was in hospital after the surgery and back in early March, would come see mum everyday and check up on her condition. Always with a smile, always giving her encouragements and invaluable kind words.

"I really did not expect the cancer to grow so fast..." the surgeon said sadly. Mum knew he tried his best, and he gave her priceless opportunity to salvage her ability to walk and move her limbs. Even for a few months, the few months since January, it is enough to safeguard mum's dignity and worth as a person. Otherwise, being completely bed-bound and reliant on another for your everyday basic needs is (without disrespect for those who are like this...) torturous and unbearable for mum. She said to me she would rather die than be like that...



Mum truly has been blessed, and she is eternally grateful. Not only the neurosurgeon has been so kind and patient, for now in the colorectal surgery ward, she is under the care of a surgeon who is perhaps the most esteemed in the field in the country, a surgeon who operated on a former president. He too visits almost everyday, and talks to mum frankly about her condition, giving her the confidence and facts that she needs to process the reality of the situation she is now in with compassionate understanding and a gentle smile.

This is the kind of medical team she needs at her side as she embarks on this final leg of her journey of life. She has the support and expertise, compassion and humane sensibilities of doctors who respects the patient's will and opinion, and is not just out there to make a quick buck or throw medical jargons around and authoritatively tell you what you must do.

"If you need me, you have my direct office line," the neurosurgeon said before he left. "Anything I can help you with. And I'll come to see you sometime again. Take good care!" And he turned to me "Anything you need, you know where to find me!"

He left the room, and left my mum smiling, confident and content, even in the face of the most adverse of circumstances.

Eight times

Mum vomited eight times yesterday. Four times during the day, once at eleven o'clock at night, once at close to one in the morning, again at close to three, again close to four in the morning.

She would lie down in bed, only to suddenly get up and reach for the plastic bag I prepared for her.

Bags and bags full of vomit, nothing but stomach juices, because there is nothing else there...

She looked visibly weak and had dark lines around her eyes. Tortured, disturbed, and so very, very tired...

Severe vomiting

Throw up... Seven times today! Seven times!

Mum could hardly stand up after bending over the toilet bowl... The stench of her stomach juices was overbearing, the sight of her sunken and dark-ringed eyes was unbearable to see...

So weak is she... So weak, so drained!

Torment

"I have never felt like this in all my life..." mum said. She looked terribly weak, terribly shaken. Another vomiting session, three, four throw ups in one go, brown liquid pouring out of her mouth into the see through plastic bag I just managed to hand her. It pains me, it really pains me so! I lay down next to her an patted her back, her thin, bony back. I felt her ribs on the side of her body, I felt her shoulder blades, I felt her spine... I felt such pain, such terrible anguish seeing mum suffer again and again.

Five times vomiting today. It seems to be getting worse, though the first few days in hospital it seemed to be getting better. Now, even shots that are supposes to prevent vomiting, which are painfully jabbed into the muscles, do not work. Tonight and last night, mum vomited all the same, yesterday even within five minutes of having the needle stuck into her arm, even barely before the blood has dried...

"What is the meaning of living is this is the way it is?" I asked rhetorically. I know, in this moment when death is lurking so close by, and just before an attempt is made to insert a tube into mum's nose so she can at least sustain her life and her body for just a bit longer, what I said was perhaps cruel and unfeeling. But I suspect that mum feels the same sentiments, or otherwise she would not say that all her life she's never been through something as terrible as what she is going through now...

What is the purpose of all this? All this pain, discomfort, all these sores and mental anguish at seeing your body decline and decline? What lesson is mum supposed to get out of all this suffering if anything? Six years of being sick, six years of treatment and getting even sicker from treatment, and now surgery, now being robbed of the ability to eat and drink

[as I was typing this, mum made a gargling noise, and I knew she was going to throw up again. Six times today! Six times!!!]

What is the purpose of all this suffering? What is the purpose of living at all if all you will get is sicker and sicker and sicker and sicker? I am hurting and crying so badly inside... So badly deep inside...

Oh, cancer! How you torment my dear, brave mother so! Oh, damned cancer! How you cause her so much pain and suffering and do not seem to want to stop anytime soon! Cancer, you are taking my mum away, bit by bit, you are making her so weak, so thin, so very sick... Are you happy now? Have you fulfilled your mission yet, or is your final object to torture her till she dies?

Well, when she dies, you will too...

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...)

Another sunset

Another sunset, another day gone by,
Another day lost, another day won,
The last rays of light disappear quickly,
And still lingering on the canvas of dusk,
Is the beautiful memory of of the day that once was,
Beautiful memory of the moments that were.

What is hospice care?

Though there is a social stigma surrounding death and dying in Taiwan, and people tend to shun talking about it, the relevant law on palliative care has already existed since 2000. Earlier versions of it in the early 1990s were specifically aimed at terminally ill cancer patients, and the law permits patients (and relatives) to choose to stop all attempts to medical treatment and pass away in a way that is comfortable for the patient, and comforting for the relatives.



 
According to a "Quality of Death Index" compiled by The Economist, Taiwan ranks 14th in the world (and 1st in Asia) as the "best" place to die in a dignified and pain-free manner. And the country's National Health Insurance (recently featured as a model for the US' Medicare reform) shoulder's the vast majority of the costs of palliative care.

A series of promotional videos produced by the Hospice Foundation of Taiwan explains to patients the possibility of leaving peacefully and painlessly.

The one above, captioned briefly:

"Terminal cancer in the final stage,
Afraid of pain, not afraid of death.
The feeling of pain is more demanding of your life than being ill.
Hospice/palliative care,
Medical intervention to alleviate symptoms
Professional stopping of pain...

A world of no pain and suffering, of peace and quiet.
To safeguard the dignity of life,
the quality of the end."

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."

Wannabe

In moments of despair, you still need to laugh and joke. And somehow I still have it in me to play the naughty, foolish child.

"Get off the bed! It's for "sick person"", my aunt told me. "Sick person" 病人 is Taiwanese for "patient". There's some social taboo lying in a hospital bed, especially if you're healthy. "If your grandma were here she'd scold you silly!"

It doesn't really bother me, and I seized the rare opportunity mum got out of bed to lie in it. I said I wanted to see the world from the perspective of mum... She her view from the hospital bed, see what angel she sees the world (or the room), from what angel she can see the tv screen, see from her bed what she can see of the world outside the window. It's good to put on someone else's perspective for a change, for I believe it allows you even more ability to sympathise and have compassion.

I played ill (without going overboard...) and that made my mum and my relatives laugh. "Everyone will come to this one day. I'm just preparing for it!" it's true, is it not? We will all get ill at some point, and one day we will die. For some people one follows the other, even though it may be a very unpleasant chronology, for being ill you really have very little appetite and energy to really live life, and then you die. What a sad state of affairs... A state of affairs mum seems to have landed in...

So for a good half an hour or so, I lay in mum's bed as she sat next to me, a reversal of roles. They handed me fruits, and I just lay there covered under mum's blanket, trying to see how it feels like being the "sick person". But of course I know however much I pretend, I cannot conjure up the same feelings of pain, sores and fears as mum feels...

I closed my eyes and lay under mum's blanket. Momentarily, I "blessed" the bed and blanket, silently praying that they will give mum comfort and a sense of security, silently wishing that my prayers of peace and happiness will flow from my mind and stay in the blanket and bed, and protect mum who now spends so much of her day lying here.

A lady came into quietly, and handed me a brochure advertising private health insurance. "I wish you will recover your health soon" she said to me.

"Thank you," I said as I received the brochure.

After she was gone, I chuckled out loud. There are times when you need to poke fun at reality and at life. And lying in the hospital bed is one of them.

Dream

So many, too many... Just images here and there that jump out now...

I was visiting my old student housing in London with a friend (though in real life I never had a friend like him...). I was just curious and wanted to see where I used to live. The security guy asked me my name, and found a huge package left behind full of things for my friend. They seem to be from an admirable, dozens of packaged food, some kind of egg package with vegetable inside (dreams don't have to make sense...), and there were also very expensive branded bags still in their original packaging...

We walked around the area, all these familiar parks and places I used to wander around by my self in while I was in London... Beautiful memories came back, then suddenly, the scene changed, and my friend was gone. U continued by myself, walked further and further until I came to an old part of town, which seemed like a ghost town... Ancient buildings were abandoned, the mood was eerie, and weather suddenly turned so terrible...

Another dream... I was with a friend, the person I went on a date with many years ago and have somehow recently reconnected to some extent. At the time when we met, it was unclear where we were going, but even then there were mutual feelings of some kind. But within a few months I began a new life abroad and nothing ever developed...

In the dream I was somewhere in the countryside with him, and we were walking side by side. Just talking, laughing and enjoying one anothers company. There was an intense attraction, and at one point I hugged him around the waist totally unexpectedly. I know it was me who made the initial move, but I felt very embarrassed and guilty afterwards, especially as he leaned in close to try to kiss me. I pulled back and said I can't. "I have someone already..."
That someone, in the dream, was my ex. For I saw his face in my dream, and that made me feel so guilty.

In yet another dream, one perhaps which does not take too much interpretation, I was in hospital with mum. She looked so sickly from afar, in much worse shape than she is in now. I walked in closer, and saw she had become so much thinner, her eyes were sunk deep into their sockets, her face so dry and so rough, her skin so unclean, her clothes seemingly unchanged for a long time... In one of her nostrils, there was a feeding tube sticking out (one very much like the one she is about to have inserted...)
She opened her eyes as I approached. It then then I saw she could not move. She was in a vegetative state... My heart broke seeing her like this. She said something so frailly I could not really catch her words. But I knew what she meant somehow. I think I've always known. Slowly I pulled the long, long feeding tube out of her nose...




So many dreams, so disturbed my sleep!

Dream

I felt myself being lifted up to the ceiling. He, my brother grabbed me by the collar and lifted me up, swearing loudly. My head bumped against the ceiling and he threw me back down again on the ground.

I was crying. "Who are you that you can treat me like this..." Mum watched from the side but could do nothing... I think she was distraught and crying...

Terrible, terrible dream that shocked me awake...

Little rabbit is ill

My nephew is ill, I believe for the first time in his life, as far as I know. On facebook, my sister-in-law posted a picture of him asleep, with the caption that he's been having a runny nose and trouble sleeping.

From the picture he looked very tired, a contrast from the very active, and ape times loud!, baby I've grown to love having around.

I hope it's a small cols, and that his little body will fight it off soon. it's sad to hear that he's unwell. And now mum won't get to see her grandchild as planned this week, even though he's leaving the country in a few days (that is still pending on mum's condition...).

They will most likely, as I spoke with my brother, be back very soon, probably the middle of April or so. But if mum's condition continues to deteriorate, I may have to keep my sister-in-law and nephew here and call my brother back ASAP...

Get well soon, my dear little rabbit!

Light on

"It's not our house!" mum said resolutely. For only one night, the first night after we were moved into the private room, did we sleep with the lights completely off.

Mum didn't sleep well that night. She was scared. We are after all in a hospital. Who knows how many people have "moved on" from this place, who knows who wanders around these hallways and rooms after midnight...

"Just leave one light on..." she said. And I'll respect her wish, even though it makes it difficult for me to sleep well.

Sunset

How many more sunsets can I experience with mum...?

The child inside your heart

(translation mine)

"You are often afraid of confrontation, worried about the appearance of disharmonious circumstances.

That is because inside there is a child who needs protection. Maybe in a forgotten era, [he] once experienced a unexplained ill intentions, and so is easily frightened and confused, because he is afraid to be hurt again.

Then, please hug this child, tell him, whatever has happened has already passed, now you have grown up already, (and) can weather all sorts of rain and winds, ask him to no longer be worried and fearful.

Yes, my dear, maybe you will still be hurt, but you are definitely strong enough."

It

This is "it". The piece of flesh growing inside mum's bowels. The view is from the endoscope conducted around twelve days ago. I saw this in that split second when I had a glimpse at the screen, and remember I said I just had a bad feeling. Something intuitively told me it is bad. And "it" is bad...

Visible is a lump on the wall of the intestines. This is about the middle section, and actually the tumour is not growing from inside the intestines, as I imagined, but growing from outside in. It came from elsewhere, and I suspect it originated from the ascending colon, where mum was first diagnosed with Stage III colon cancer. Over the years, despite a section of the colon being cut off, despite dozens of chemo treatments, the cancer came back, with a vengeance so to speak. A lymph node in that section of the body has been known to be infected for at least one year or so. And once a lymph is infected, it does not take much For cancerous cells to be spread around the body through the blood vessels that connect to the node.

The black and white MRI image, as the doctor explained, shows an abnormal lump to the centre right of the image (in military positioning, Located between twelve o'clock and one o'clock.) That is not supposed to be there. Whereas the wall of the duodenum (small intestines) are supposed to be only a thin squiggly black line (centre right corner, between two and three o'clock), the lump shows that the walls in that region have become abnormally fat.

The tumour is compressing on part of the horizontal colon, compressing on the exit of the stomach to the duodenum, and is dangerously close to the pancreas and spleen. Dangerously close, because though the doctor did not confirm whether there is spreading to the latter two organs, the chances are with time, and it does not take much time, that is bound to happen.

"Treatment... Is it possible?" I knew the answer, but I needed to hear it again, from the third doctor I have spoken to in recent weeks about mum's condition. And the answer was clear.

Mum did not accompany me into the consultation room when the doctor I requested to speak to came to pick me up. "The past few weeks have been a rise and fall of emotions. I had hope before, but now I have really fallen to the bottom of the valley" A local saying for being or feeling the lowest of the lowest. I have rarely heard mum describe her feelings so articulately, even though I know from the expression on her face, from the way she stares into empty space, I can feel she is deeply disappointed, deeply disillusioned.

Yes, there was so much hope before. We thought once the spinal tumour had been removed, then we could stop all treatment and she could rehabilitate and eventually regain her health so she can live out her life as she wants to... But who would have known, who could have imagined that within a month or so of doing so well at rehab and returning home, the complications with eating kicked in. And for so long we were so fooled into believing it was all just due to steroids and the sideeffects of too many pills she has been taking in. Who would have thought as we were dealing with a large lump in the spine, a devious cousin of that lump managed to incubate and start growing and getting stronger and angrier under our noses without us realising it...

Mum did not want to know or see the full extent of the "damage" inside. She more or less knows, I guess, for it is her own body, her own discomfort and her own intestines that is often gargling so loudly as if they were trying to tell us, warn us something is amiss there.

I came face to face with the cancer, and it did not look so menacing to the untrained eye. It is part of the body, part of the same system and feeds off of all the nutrients that healthy, "necessary" cells need to sustain themselves. Cancer, like all sorts of lifeforms, need oxygen and nutrients. Like all cells, its purpose is to multiply and grow and spread. Its life is

[half way writing this next to mum's bed, mum suddenly woke up from her sleep, grabbed a bag and began vomiting, again and again until the see through plastic bag was almost half full... I hugged mum as I helped her up... Again I felt how thin she has become, how much thinner she is getting from the day I saw her when I returned home almost three months ago... My heart ached and felt so sorry. I could not do anything! I could only hug her and stroke her hand... Pat her back... Damn you, cancer... Damn you...]

Its life is killing, killing healthy cells bit by bit by bit until whole organs fail, until whole systems become dysfunctional, until the entire body can no longer sustain life itself... and dies.

I thanked the doctor, and knew what I needed to know. I confirmed what I needed to confirm, and that is mum's condition is truly beyond treatment. Why even attempt to treat something that cannot be treated, and is even less likely to be treated with mum's declining health and inability to eat properly?

Now I realise, after seeing the images, after the doctor explained to me mum's condition, after hearing perhaps the loudest and clearest expression of despair and hopelessness coming from mum, I must be prepared...

Before I still thought perhaps there is hope yet, but now I know, perhaps I have known for a while, that we must accept and face the realities, however painful, however torturous they may be.

Exchange for love

By: cotton candy ( translation mine)
"I said: can diamond be used to exchange for your love?
You shake your head.
I said: can vanity be used to exchange for your love?
You shake your head.
I said: can external appearance be used to exchange for your love?
You actually cries and said:
I only want a heart that loves me."

Trial...

I got three, perhaps three and a half hours of sleep yesterday. I was furiously writing, writing down my emotions and about events in the day till one or so.

When I lay down to sleep, I could not. My stomach felt very acidy, and there was a lot of pain that made me feel like vomiting (but I could not, and I did not vomit...). Mum too had a rough night, and was sort of half asleep till three-ish when she asked the nurse to take off her IV drip, for her hand was getting red and swollen.

I could not sleep much, lay awake thinking, or having thoughts run through my head...

Morning rolled around, and unusually it was a beautiful, bright day (to start with at least...) The doctor came in with a consent form, one that is still unsigned and still lying on the table. Consent form for the insertion of the NJ tube, which can be expected to be done either today or wednesday.

Mum still has some questions, about whether it will hurt, about the discomfort and pain. The doctor admitted he had it installed once, and it was uncomfortable to start with, but you'll get used to it.

"Is this the only option?" mum asked.

"It's the best option..." the doctor said it is the only way mum can get any possible nutrients, for her vomiting has again intensified. Yesterday, she threw up four times no less, whereas a few days ago she could still drink soup and liquids without much vomiting. Even last night, when she lay down to sleep around eleven or so, she suddenly called me and said she needed to vomit. And she did, a big bag of brownish liquid. When the nurse gave her some medicine to stop vomiting, within a few minutes, she vomited yet again...

"There may be a chance the [nose] tube may not go through, if it has grown too big..." "It" meaning the tumour, the ugly, ugly tumour that is growing stronger as mum grows ever weaker. "Then it would be more complicated, as we's have to get the team together to see what to do..." The doctor looked uneasy, and hesitated to say what other options there are, if indeed there are any.

As the doctor left, I spoke to him quietly outside mum's room. "If you have a minute later, I'd like to see mum's scans..."

I want to know, I have the right to know, as does mum, though perhaps she does not want to know.

I have this sordid obsession of wanting to see the tumour, see the extent of the "damage" inside. For my sake, perhaps, just to make sure that what I have been imagining, what I have been thinking and the ideas I have been proposing are not too far fetched.

Because we only have a chance at life, we only have a chance at living. We only have a chance at getting it "right" in preparation for the end of life. If there are options we have not looked at, facts mum (and I) do not yet know about, we need to know, and we need to know now.