Consultation

The doctor agreed to increase the morphine dosage and to give mum a sleeping aid. If need be, additional injections can be administered. It will reduce her anxiety and feelings of pain and discomfort. Mum has been extremely agitated and looking very pained and anguished for the past twelve hours. It was a very rough night with little sleep.

"I'm right by your side, mama," I told her earlier, "I'll hold your hand..." Mum looked at me and nodded. She said nothing, but she nodded. She looked, at least for a moment, calmer.

"From our observation, two, three days," the doctor said. Perhaps today the IV will be removed. The doctor also advised not to feed her anything, for from what he can see, mum seems to be eating for our sake and less because she wants to eat. "Frankly, her insides may have become more blocked. And it is causing her discomfort to eat and drink too much."

Brother and I walked out of the consultation room (beautifully called "Room where the hearts meet 會心室). We seem have decided mum's life. The doctor said the most they can do is make her sleep more, because by sleeping mum is escaping from whatever pain may be there, whether physical or mental. The body will take it's natural course.

Soon, soon, mum will no longer be gasping laboriously for air...

Restlessness

Brother was crying on the phone. "It is such a difficult topic to bring up..." he said amid tears. I told him calmly I understand. How do you tell someone you want to up the dosage of the morphine, knowing very well that it may hasten the coming of passing? It is not that we want to kill her quicker. We just want to make her feel more comfortable and feel at ease, and go in a calm and peaceful way. I know mum would want the same, for she is suffering, in pain, in agony and trapped in a body that is dying ever so slowly. Must the suffering be unnecessarily prolonged, and for how much longer?

I told my brother I'll speak to mum about it. Mum may be dazed and confused, somehow when I ask her something in Taiwanese she seems to hear me and she does respond.

The doctor came by today and said mum may never leave the hospice ward. I knew this somehow already. I had a feeling. And I saw it in my dreams. The doctor gave us an excerpt from a book loosely translated as "Life's compulsory 10 lessons in life and death". In it, the chapter talks about what a person goes through mentally and physically a few weeks, few days and few hours before death. Within a few weeks, a "spiritual death" occurs, when the person becomes so tired and the body because exhausted. The inability to walk and the inability to go the washroom independently, and in many cases incontinence, will often cause the patient to question the meaning of life.

Within a few days of dying, the patient sleeps more and more, and in those brief waking moments the patient feels a lot of physical pain. Morphine is often used to reduce the pain at this stage, and partly because of the effects of the drug, but also partly because the body is getting ever weaker, the patient has more difficulty expressing herself, and is easily confused and forgetful. There may even be hallucinations, and nonsensical talking. This is where mum is now, I believe.

The doctor said she's going to go from six-hourly injections of morphine to a steady drip into her body. This way mum will feel more comfortable, and will be less susceptible to pain and discomfort, which can wake her up and disturb her sleep. Her body is "changing", as the nurses and doctor like to call it and I figured after so many times of hearing it, the word is just an euphemism for dying. As it "changes", the body rests more and more. Waking up every so often from pain or discomfort is a painful struggle for mum, for she has to expend what very little reserves she has left to fight the pain. A continuous flow of morphine will keep her continuously at ease.

The doctor recommended a dosage of 15ml per twenty-four hours. And an hour or so after the new regime went into effect, I could see mum become very agitated and restless, more so than ever before. Something was bothering her, but nobody could figure out what. Perhaps the dosage is not strong enough. Later the nurse revealed to me that specifically in mum's case, there are increase signs of internal bleeding that are related to progression of mum's cancer. This most likely is causing mum even greater discomfort and pain.

Calmly, I sat down next to mum. "Mama, brother and I discussed and we would like to increase your dosage..." I said to her. I held her hand as I said those words. Held her hand so that she feels the real intentions behind what I'm saying to her, so that she can feel and know that what I am proposing is out of our genuine concern for her wellbeing. "it's not that we want to make you go quicker, but we want you to be more comfortable. You've struggled long enough..."

Mum looked at me in the eyes. From the look I could tell she understood. From the look she agreed. Her nod and a very weak "Ok" confirmed it. Her agreement lifted a heavy burden off of my shoulders. I am her son, her own blood, and never did I imagine there would be a moment when faced with having to decide, or at least influence, my own mother's final moments...

I held her hand even tighter. "Let go, mama. Let go of this body, and let things take it's natural course..." These words were so similar to what I said to dad the moments before he left this world. The memory of that scene, four years ago, at this very hospital, merely a few storeys below where mum and I are now, made sadness swell up deep down. "This body is not ours... Relax. Let go of anything in your mind, let go of this body. Let go..."

Whatever happens in the next days or so, I will be by her side. And I will take her by the hand.

Further decline

Mum is snoring, a sign she is asleep. She has been sleeping most of the day, more and more like a baby or child who needs, or perhaps not need but just naturally sleeps more sleep than the average. Just before going to bed, I read to her part of an article in the book that the monk in the mountains brought her when he visited two days ago:

As soon as we're born, we're dead. Our birth and death are just one thing. It's like a tree: when there's a root there must be twigs. When there are twigs there must be a root. You can't have one without the other. It's a little funny to see how at a death people are so grief-stricken and distracted, tearful and sad, and at a birth how happy and delighted. It's delusion, nobody has ever looked at this clearly. I think if you really want to cry, then it would be better to do so when someone's born. For actually birth is death, death is birth, the root is the twig, the twig is the root. If you've got to cry, cry at the root, cry at the birth. Look closely: if there was no birth there would be no death. Can you understand this?

She thanked me for reading to her after I finished. She does not say much these days, perhaps because as she says, she is just feeling very tired all the time. She barely can muster the energy to move her body sideways to shift her weight so that she's not lying on one side all the time. But the piece I read her these last three days is very pertinent to her at this very moment.

Mum knows she is dying (well, if you look at life in the broader sense, we are all dying...) We do not say it, the nurses and doctor do not say it, but we all know. Why else would she be in the hospice ward? Why else would she still be here, even though the normal 'two week' period of stay has already passed? It is because her condition is not stable, and is not stabilising. With each passing day, her energy levels are draining away, her resources are being used up. With each passing day is a day closer to that moment...

The doctor came in yesterday, as she does every day, and asked her how she is doing. More and more, mum is gagging. She does not necessarily vomit, for there is very little that can come out  of an almost empty stomach. But more and more she feels nausea and gagging reflexes, sometimes triggered by the slightest of certain smells or discomfort. And less and less, she is eating. Today, she drank only a bit of Ensure, and a few mouthfuls of udon noodles and soup. That was it for the day. That was it.

When the doctor left, she patted mum's arm, and said: "As long as you are comfortable..." "As long as she is comfortable..." I repeated after the doctor.  Brother looked at me, seemingly puzzled by what those words meant. Isn't it obvious what those words mean?

I sit at mum's side a lot these days. Just sit there and watch her sleep, watch her body heave as she gasps for air from the oxygen tube leading to her nostrils anchored around her ears. The shadows around her eyes are getting darker, her right arm and legs are getting more bloated from not moving (strangely her left arm seems fine... even though fine means just skin and bone...). And she gets thirsty a lot, so every now and then I ask her whether she wants water or tea. In the back of my mind, I remember what she said to me before: in the end, she will get very thirsty and dry. And every now and then, I apply lip balm on her dry lips.

There are signs, more and more signs, and more and more my sleep is being disturbed and taken over by images and dreams. Nothing I can remember, but I do wake up feeling more tired than going to sleep... Sometimes, when I watch mum lie there and sleep, I catch myself thinking, asking myself "How much longer...?" I know that is a disturbing thought. But I know mum is in a lot of discomfort, and I can feel she is hurting to be dependent on others to bring her water or to flip her body...

"Where are you off to today?" the nurse asked as she came in to do the early evening check up.

"We haven't decided yet. We just went to Germany this morning. We'll have to see how mum's energy levels are!" I answered. In the end, when mum struggled to take in those meagre mouthfuls of noodles, we journeyed to mum's favourite country, place she has visited at least ten times: Switzerland...

Yes, mum may be dying, her body may be giving up, but that does not and should not keep us from continuing to live, continuing to smile and joke and "travel"-- even if it is on a TV screen. The body may be slowing down, mum's mind may be showing signs of confusion and disoriented with the time, but that does not prevent us trying to make her comfortable, as comfortable as comfortable. We may not be able to beat death, we may not be able to beat the pain and discomforts mum feels, but the strokes of her arm, her head, and the many moments when I am holding her hand mum can feel too.

And when  I hold her hand and when I feel her weakly tighten her grip, I know she feels cared for and loved. I know she is not afraid...

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.

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.