Pain and morphine

"Doctor, the pain in the stomach...?"

"I just felt her abdomen, and it's bloated from the retention of liquids. We haven't done any scans yet, but most likely the cancer has progressed in the intestines, causing the swelling and occasional pain," he explained, "We can give her some morphine. Small doses to start with. It'll make her feel better." I thanked him, and he bowed his head gently before walking away.

I walked back into the room, and mum was languishing in bed. Today, more than ever, she has been very restless and asked to have her body shifted several times due to sores. Mum has become so weak that she cannot even shift her own legs, let alone turn her body so that she's not lying on just one side. These are signs, I fear... (but then again, I am not a trained medical expert...)

As the carer took half a day off, it was just my brother and me taking care of her. For much of the afternoon, mum lay there in bed with a lot of discomfort. At one point the nurse did come with a syringe containing the painkillers (3mg of morphine) which she injected into mum's IV. Mum felt a bit better, and within an hour or so fell asleep.

Mum spent most of the day in a state of waking moments of daze or sleep with her mouth open. At one point, she opened her eyes and saw me sitting by her side. She whispered (maybe not intentionally, but what sound she manages to muster these days is no more than a whisper): "I know it's been hard on you seeing me like this..." Mum's voice is almost inaudible now, and every-time I really have to strain close to her ears to hear her. I reassured her I would have it no other way. "I know, I'm very lucky. Even the monk said so..."

"Isn't this the best you could wish for? So many people who care about you, so many people coming to see you. You're with your children and grandchild. What more would you like? Would you like the president to come see you?" I joked. (It really was a joke, for the current president is an incompetent fool who's policies are jeopardising the survival of my homeland. He is not welcome here. I'd lynch him and shout abuse at him if I had the chance...)

"Would you like to go home?" I asked her. I told her about the dream I had the other day, the dream in which I was by her side at that final moment and when i said "Let's go home..." Mum weakly shook her head. I asked again whether she would like to be at the hospice or be at home "when that moment comes". 

"Here... I don't want to scare any of you..." mum said weakly.

"You won't scare us!" I said. By "scare" she means that she doesn't want to appear in her spirit form and frighten us after she passes, for according to local beliefs the spirit of the deceased will remain in the place of death for some time, often "haunting" the place until  the spirit can find a final resting place. "It is your home, you can go back to if you want to, if you feel most comfortable..." Mum dozed off before she said anything else. I held her hand for a little longer before I let go.

While talking to a nurse, I learned that fluids collecting in the stomach ( the medical term is ascites) may be caused by the thinning of blood vessels which cause whatever fluids in the circulatory system to escape into the body (whereas normally the fluids are contained in the blood). Another possible cause may be due to liver disease, and failure of the liver to process and reabsorb the waste fluids of the body. Both possibilities may explain mum's bloated stomach, for since last week the nurses have been unable to draw any blood from her veins, for they have become too dehydrated. It is also likely that mum is suffering from liver disease, as the bile fluids are unable to completely come out of the body, and the build of bile is not only causing jaundice, but also affecting the normal functioning of the liver...

Does it matter what the real reason is behind mum's latest complication? The reason we are at the hospice is not to treat, but to alleviate pain and suffering. And the first administering of morphine is a step in that direction. A worrying step, because I have seen before what morphine can do to her mind.

For most of the afternoon, I was pensive, a little shaken and saddened.  Mum ate next to nothing today. The bloatedness of her stomach and perhaps the morphine made her have even less of an appetite. The few moments when mum woke up, she is lost and confused, more than ever before.
At one point, just a little after six in the evening, and after sleeping for two hours or so, she woke up and murmured: "Why are you here? Go to sleep! It's still so early..." She thought she had slept all the way through till the morning. An hour later, she woke up, opened my eyes and saw me sitting by her side. She said: "It's so late already! Go to bed. Don't sit there..." Is it the morphine, or is it her malnourished body and brain that is causing her to have difficulty comprehending time and what is happening?

I do not know. But this is the way mum is now, and her condition seems to be deteriorating rapidly.
I sense a new stage of illness and difficulty has come.

Brother's touch

Brother sat by my side. We were sitting by mum's bedside, watching her sleep, watching her slip in and out of sleep and that half-conscious state of mind. Mum breathed heavily, and her mouth was half open. Her lips, in the span of only a couple of days, have become so dry that I have to regularly apply lip balm on them to keep them from chapping even more.

Mum opened her eyes slightly. I smiled at her gently, and wanted to reach out to touch her arm. Unexpectedly, brother called out: "Mama..." It was a sad and desperate call. A call out of hurt, out of deep concern and anguish. I turned to look him. His eyes were red, and a little moist. I saw him reach out his hand and touch mum's. I withdrew my hand, to give him a chance to express himself.

 My brother rarely touches mum, even though at times I urge him to. The other day, I joked with him: "How come you can touch your baby, touch your wife, but are embarrassed to touch mum?" But today, at that moment when he reached out his hand to touch mum's hand, it was such a touching sight. It was not even a grasp, but it was a start. Mum and son touching one another. Could there be a more beautiful connection?

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...

Incontinence

"You know about mum's incontinence?" brother asked. What a way to start a conversation in the morning...

"Yes, I know."

"You know she can't differentiate between urinating and defecating? I don't want to scare you, but I've spoken to a number of people, and it's a sign at the end that the bodily functions are failing..."

I know. I know. I've seen how mum has to wear diapers and has to have her diapers changed every hour or so. The carer said there's often poo and pee at the same time, even though
Mum doesn't eat much. Even the nurse is puzzled where the faeces is coming from... I know. I know. I know...

Mum is declining... Her life signs are fading. I know, and I do not flinch. Not yet.

Diagnosis

"For two days she's well, and the third day [her health] decline[s]..." That was how the doctor described mum's condition. They tried to take some blood samples, but her blood vessels have shrunk to an extent that it's next to impossible. Only after poking in two areas did they manage to draw a few milliliters of blood. I watched and cringed as mum lay there with a face of agony...

The tone of Mum's face is especially dark today. And for the entire morning she writhed in bed in obvious discomfort. It's been four days since she last got out of bed. The last time her knee buckled when the carer and I tried to hold her up. That was cause for quite a scare, and it left mum gasping for air...

Two steps forward, three steps back. Mum is in decline. Every day she says things like: "It may not be long..." or "I'm just waiting..."

My nephew came and we all had lunch together. Mum had a small piece of chicken and a bite of rice and a mouthful of vegetables. That was her lunch. We watched a DVD about Canada, and we reminisced all the places we have been together. For that hour or so, she was lost in the memories of those travelling days gone by, she was focused and amassed by the mischievous grin of my little nephew who likes to wriggle like a worm and who likes to reach out and touch mum's arm...

I stroke her face, I stroke her hair, I touch her cheeks, I press my cheeks against the palms and feel the weak grasp of her hands... There are moments when I think to myself, when I see her gasp for air or close her eyes and grimace: "Is this it...? Is this the moment...? Is this how it ends...?"

But mum's life and fate have not run their course just yet. I keep on telling her "It doesn't matter how long... Don't think about it too much..." But I know deep down it matters, because she is in pain, she is not feeling well, she is suffering-- if not physical discomfort then she is suffering the humiliation of being mentally so wide awake as her body breaks down. The humiliation of being unable to walk, being unable to control her bladder or bowels, of having to wear diapers and being unable to change them herself and needing another to clean up after her...

Hang on there mum... We are here with you.

Deterioration

Mum heaved from a shortness of breath, and her body trembled terribly. She could hardly speak from the trembling. I watched in horror and in pain as the next couple of hours of drama unfolded...

Late afternoon, around three or so, mum suddenly complained that the room was getting very cold, even though the temperature was set at twenty-five Celsius, and outside it was one of those hot and humid pre-typhoon days when all the clouds have been more or less sucked away. We put on two blankets, but still mum was cold. My plan to take her out for a little walk in a wheelchair, which would have been her second outing since my return five days ago, had to be cancelled. She was in no state to get up.

For a good while, she remained cold and ran a low fever. Brother and I sat by her side, and I stroked her hand and arms continuously to try to warm her up. She was short of breath, and gagging at the same time. She looked so scared, so very scared. I too was scared... "What if today is that day...?"
My mind kept on having this uneasy feeling that something was happening, and for the most part of the afternoon (and even now...) I felt such a terrible headache and dizziness.

The nurse came in frequently to check up on her and monitor her vitals. Even the nurse was lost as to why mum was having a strange episode of trembling cold and shortness of breath, even with the oxygen tube attached to her nostrils. She had no appetite whatsoever, and only drank half a cup of Ensure supplements and half a cup of blended juice. That was it for the day...

I don't know why but I have such a terrible feeling... Terrible feeling. It was not quelled when in the evening mum said at one point, so weakly: "It may not been long..."

For much of the day, since the start of the breathlessness and trembling spells, mum lay there in great discomfort. I can see it on her face, I can see it in her eyes... There is such fear, such fear for the unknown...

And I too am plunged into this dark spiral of despair and helplessness, and struggling hard to find my footing and be strong...

Mum's condition

"How is she?" i asked as two aunties left and headed to the elevator down. They came to spend a few hours with mum after choosing clothes for mum with me. Clothes for when mum...
I stayed home to rest for a little while, and also to cook some soup for mum.

"The condition is not good. Just let things be..." one auntie said. She used to be a nurse, and she has been so caring over the past few years, calling every day almost to check up on mum, and visiting her every week. Sometime ago, this auntie said that according to taiwanese beliefs, many critical ill people do not live for long after or before a big festival. The upcoming one, Dragon Boat Festival, is in less than a week.

"Last week she had more energy and was more talkative. Today she looks very unwell..." The aunties tried to give her some traditional noodles to eat, thinking the noodles would bring back nostalgic memories and tastes of the past. Mum are two bites, and threw up four mouthfuls... When I came in, she looked in worse state than she was just four hours earlier when I left her to go home and meet with the two aunties.

"She does not seem able to control her bowel movements. She doesn't seem to know whether she urinated or pooed..." I heard that, and felt such a deep, deep sense of sadness. My own mother, now unable to control her own bowel movements. Her dignity and worth is being further eroded. How she must feel...

"Thank you... Thank you for coming and spending a valuable weekend day off with her..." I said and gently bowed.

"Please don't say that. You and your brother have done a lot, and you should not feel so sad. Just let nature take its course," one auntie said. They praised mum, said how lucky and fortunate she is to have us as children, and to be surrounded by people who are there to help and support her in different ways. "It is because of her kindness, and all the merit she has accumulated..."

Humbly I bowed again and bid the aunties farewell. "Thank you..."

I returned to the room, and mum was almost asleep. The carer is patting her back to make mum comfortable. Mum opened her eyes, her tired eyes which had dark circles around them. She blinked quickly, something I've noticed she does more often these days. "Ask them to go already. It's too late..."
She meant ask the aunties to leave, because they have spent an afternoon with her. But the aunties left around five minutes ago. That did not register with mum.

Perhaps mum is too tired that she is not fully aware of what is happening around her. Brother told me that she has become like that since last week, and today was the first time I noticed this "lag" in her response. The doctor said deficiency in ions and nutrients may cause sensory neurones to slow down the passage of messages to the brain and slow down memory. Whatever it is, it is painful to see.

I smiled at mum, and held her hand to reassure her. "They've already left. Don't worry, you rest now... Take a good rest. I'm right here next to you..."

I am. And I will be till the end.

Signs

Mum was especially lethargic tonight. It was worrying. She was slow to respond to questions, and had no appetite. She looked very pale and so very tired. I was getting anxious. Perhaps prematurely so, but I did not know what signs to look for. This is all new for me.

The nurse came in to check up on mum, mainly to check if the IV drips are functioning as planned. That is really what they do here at the hospice ward. Check on the vital signs, make sure that the vitals do not deteriorate, and if need be boost the patient's nutrient intake through shots and drips.
Normally, she would joke a bit and try to make mum laugh. Once she came in at the same time that the carer was hugging mum and helping mum to stand. "Doing the waltz, I see!" That got many smiles. But tonight, she was more subdued, and quietly left the room when she finished checking up on mum.

I followed the nurse out of the room. I told her my concerns, and asked her what "signs" to look for. She did not immediately understand what I meant, for I was being vague and skirting around the word dying. Eventually she understood.

"Mostly it's in the breath. The breathing slows, and so does the pulse. Sometimes the limbs will turn purplish, a sign that  the circulation is getting slower and poorer. And there will be less expulsion of urine," she said. I listened attentively, and made mental notes of these signs to look for. Mum has not shown any of these, but her breathing is laboured and she often has to rely on a tube to help her get more oxygen. Her toes have turned a little purple, and yesterday the entire underside of her feet were dark in colour. But that could be more related to poor circulation...

"Some patients experience hallucinations and they see things. If it's something not too frightening, go along with the hallucination and try to imagine seeing the same thing. If it's something frightening, then reassure the patient where they are and that you will not leave them..." She was very calm as she described the signs of death. She must have seen and experienced a lot of it working at the hospice ward. She was probably there when the latest patience 'checked-out'.

She changed the topic, and asked me what mum liked to do before. "Travel," I said, and described how those picture she saw on the wall are from the trips we have taken together and of places we have been to together. I briefly told her how the last couple of years have been, and that ever since she got cancer, I have been determined to enrich her life and fill it with beautiful, beautiful memories. Did I succeed? "It has been tough, going in and out of hospital so often. But as soon as she stopped treatment, I would take her somewhere. Life has been exciting and colourful, and I think she treasures those memories". I told the nurse about our reviews of pictures. Yesterday, the same nurse walked in on us watching a video on the Canadian Rockies, and she saw how excited mum was to review the lakes and towns she has been to.

The nurse asked what mum liked to do with friends, and I answered that she liked to go shop and sit in a cafe and just chat the afternoon away on weekends. "You know, you could organise a little get together. She may not be able to go out now, but you can recreate that atmosphere and those feelings of sitting around table chatting with friends and loved ones. It's like reliving the trips you made together, but this time it's recreating the feelings and smell of a cafe. It will make her feel familiarity and ease inside. It will be god to her..."

We stood in the corridor for a while, chatting. She gave me a lot of tips on the final stage of life, and how to face it. We talked about Buddhism, and I found out she too is into meditation and understands the Thai tradition that I am practicising. The nurse tried hard to think with me what things we could still do and arrange with mum. This was the exactly the kind of support I need. The kind that can help me take away much of the pain and hurt and transform it into creative endeavours that will make mum's remaining time in the world worthwhile and meaningful, memorable and  so very valuable.

Plans are being hatched, and all the while mum was resting in the room behind us...

Circus night

I saw the promotion yesterday and immediately had the urge to go. again, because of mum, as strange as it may sound. She and I went to Cirque du Soleil (Totem) around this time last year. I promised her to do that in Quebec, the home base of the amazing acrobatic troupe. And I lived up to that promise.

I called mum half way through the show and excitedly told her about where I was. "Oh, it's really cultured..." she said. I know she has fond memories of the show. The first time she saw it was with me in Taipei. The second time was with me, right here, right at the same location in Montreal, a year (or so) ago.

The show was spectacular, the performance elegant and performers beautiful. But my mind was filled with thoughts... Me flying, me waiting at te airport, the fear of not making it home on time, me at the hospital, mum sleeping and opening her eyes only briefly every few hours... So many thoughts and distractions...

After the show I saw several missed calls from brother. I called back.

"We're heading into the hospice ward now..." he said "There's a bed available."

My heart sank and felt so heavy. Earlier when I spoke to mum, she said she had troubled breathing and that her heartbeat was very weak. I told her to hang on. I told her that I'll be home Tuesday afternoon. She told me not to rush...

I hung up the phone. My friend was next to me. "It's not easy... You're so strong going through this. I can't imagine what you are feeling now..."

I cannot either.

Breakdown

I was talking on the phone with my ex. "I just hope she is not in too much pain..." he said.

"I hope so too... I hope so too..." I uttered.

"I wish I could give you  a big hug..." he said. And the tears just broke loose from my eyes. I had t cut short the conversation and just cry and whimper. I could not bear to speak to anyone. I had no words, and was so very tired, so hurting inside.

The whole evening I have been waiting for brother to call back, as he said he would. I called earlier in the evening to see how mum is doing. They were busy, as for the first time the hospice nurse and a doctor came around to check up on her. They are putting her in the queue for a bed at the hospice ward. They want to take her in for some IV drips. At the hospice ward...

I broke down, because I could not bear the thought of mum entering there. As I told my ex, "It is the first time she's going there. Maybe the only time..."

I cried for a while on my own while my cat nudged me and walked around my feet. It is her way of comforting me, I know it, I feel it.

Brother still has not called back, and I tried to call twice already but there was no response.

It will be a long night...

Unwell

Brother suddenly called me in the evening (morning Taiwan time).

"I don't want to scare you..." he said, "And please don't worry or think too much, but mum said she wants to go the hospital."

Mum dislikes the hospital... She could hardly wait to get out of there. But today for the first time, she requested to return. I asked to speak to her.

"I just feel very weak, like there's no energy..." she mumbled. I struggled to hear her clearly. My heart pounded like it did almost five months ago, when I got "The Call". I began trembling. At that moment my friend dropped by. I had asked her to come by because I needed her help printing documents I need to apply for a visa home.

"please don't rush here... Stay where you are for a bit longer. You've been flying around too much. No need to "chia bua bing"" Meaning "turning the place upside down", or making a mountain out of a mole hill.

I spoke to mum a little more, but she was getting dressed to go. Brother took over the phone and tried to reassure me more. But I was beyond reassuring. I trembled and shook, even though I said I'd go sleep. I did not.

Not much later, I was holding our family portrait and sobbing heavily again. My friend placed an arm around me and tried to comfort me. I was beyond comforting, and sobbed even more. I felt the saltiness of my tears in the corner of my lips. I felt the snot run down my nose. I was distraught, anxious, petrified. I was so far, far away... I folded my arms before me and clenched my fists. I held myself tightly, for it was the closest way i could console myself. Eventually I stopped crying. And soon began to joke and laugh with my friend as she hugged me tightly that I must smell really bad because I've not had the time to shower since my long bike ride today. She said I smell no more different than before, which could be a compliment, or insult. That's why it was funny. That broke my flow of tears And made me smile.

"I can still smile, right? Smile and laugh?" I asked.

"Yes, you can," she said as she stroked my shoulders. And that's an amazing ability in the face of everything.

It is so painfully hard, gruellingly difficult these moments of unknown, these sudden phone calls that leave me gasping for breath and for sanity. But one day it will be all over...

One day it will all be over...

Unwell

Brother suddenly called me in the evening (morning Taiwan time).

"I don't want to scare you..." he said, "And please don't worry or think too much, but mum said she wants to go the hospital."

Mum dislikes the hospital... She could hardly wait to get out of there. But today for the first time, she requested to return. I asked to speak to her.

"I just feel very weak, like there's no energy..." she mumbled. I struggled to hear her clearly. My heart pounded like it did almost five months ago, when I got "The Call". I began trembling. At that moment my friend dropped by. I had asked her to come by because I needed her help printing documents I need to apply for a visa home.

"please don't rush here... Stay where you are for a bit longer. You've been flying around too much. No need to "chia bua bing"" Meaning "turning the place upside down", or making a mountain out of a mole hill.

I spoke to mum a little more, but she was getting dressed to go. Brother took over the phone and tried to reassure me more. But I was beyond reassuring. I trembled and shook, even though I said I'd go sleep. I did not.

Not much later, I was holding our family portrait and sobbing heavily again. My friend placed an arm around me and tried to comfort me. I was beyond comforting, and sobbed even more. I felt the saltiness of my tears in the corner of my lips. I felt the snot run down my nose. I was distraught, anxious, petrified. I was so far, far away... I folded my arms before me and clenched my fists. I held myself tightly, for it was the closest way i could console myself. Eventually I stopped crying. And soon began to joke and laugh with my friend as she hugged me tightly that I must smell really bad because I've not had the time to shower since my long bike ride today. She said I smell no more different than before, which could be a compliment, or insult. That's why it was funny. That broke my flow of tears And made me smile.

"I can still smile, right? Smile and laugh?" I asked.

"Yes, you can," she said as she stroked my shoulders. And that's an amazing ability in the face of everything.

It is so painfully hard, gruellingly difficult these moments of unknown, these sudden phone calls that leave me gasping for breath and for sanity. But one day it will be all over...

One day it will all be over...

The longest talk

"Mum won't last till the end of the year..." brother said. The words washed over me. The words normally would affect me, make me breakdown and cry, cry, cry, but I did not feel much. Perhaps since that night two nights ago, sitting on the edge of the great waterfalls, I have become all cried out. Perhaps the waterfall drew all the tears out of me, perhaps the falls shook out whatever sobbing and sorrow there is inside of me. I felt guilty for not feeling much when brother told me mum may not have long. And yet, i said to him: "But didn't we know this? Isn't it better for her if she is in so much discomfort?"

Why do I not feel much? Is it because I've been away from her too long? I've not see her, held her, touched her for the longest time, it feels like. Every time mum and I speak, it's so brief and so superficial. There really isn't that much to talk about. Her day consists of waking up, eating what little she can, and then resting, massages to keep the sores away, medication to numb the pains in her arm. And my day? I try to tell her happy things, what I'm doing here, try to tell her about my life. But at the same time I feel guilty telling her about my travels and "fun" life when she is more or less bed-bound. And I'm not going to go into any details about my ex and I, for she would just worry that I have no one at all in this world. And she gas told mr so many times her greatest fear is her leaving me before I found someone who can and is willing to be with me, take care of me, and give me the love and support I need in the future...

Brother said they went to her main physician today. He did nothing. There was nothing to be done. The inflammation of the pancreas cannot be treated, for she has to stop eating for the swelling to go down. And mum cannot afford to stop eating, especially given how little she eats. Besides, perhaps it's more than a mere inflammation. It's probably the cancer eating through, spreading.

And brother said he went to see the family doctor because the forms i signed and the arrangements I had made for hospice care went "missing". Nothing was ever processed, so the hospital has no record of mum's decision for hospice care and no notice of the DNR form she previously signed. Brother rectified this, and soon there will be a hospice care worker visiting mum at home every few days.

I suspect my aunts (mum's sister and mum's brother's wife...) has something to do with it, that perhaps in my absence they told the nurses and doctors to belay the orders. If that is the case, it is such a great and unacceptable interference in our lives and shows such disrespect for mum's wishes. It is her life, it is our own family affairs, so what gives them the right to veto a decision that was taken unanimously by members of my immediate family?

"Her friend said according to Taiwanese tradition, mum may not survive past the Dragon Boat Festival..." brother said. I'm not sure why that is, and what the explanation for the belief is. But thinking back, Dad did pass away the day before the new year... Dragon Boat Festival, that's in four week's time...

Mum has lost even more weight, and whatever she manages to eat now is probably just sustaining her vital functions. "When can you get back here? How long will it take you?" Brother asked

"Within twenty four hours. I can be there within 24hours..."

"I'll let you know at the very first instance. Do make a note of the times of flights so you are ready to board any time."

"I know. I already have."

I already have... I already know the flights times and connection possibilities. My credit card is permanently credited, my suitcase is standing by and ready. The next trip will be one final one, and there are things, special things I am preparing to take with me. Clothes, pictures, memorabilia... memories of mum's life, of my role in hers, of her role in mine. Most things are packed and standing by, more or less ready to leave at a moment's notice...

But there is only just my heart, my mind, my soul still needs to prepare and brace for that day, for that moment. And my god how weak and tattered my heart is right now... How much I need to work on my heart, my soul, my mind to calmly weather whatever is coming ahead...

In Perrineville

Spoke to mum just now. A brief conversation. I hesitated whether to tell her where I am, for she never did have a liking for my aunt in the US. but I told mum anyways, just to let her know and not have to hide things.

It was a very brief conversation, and I explained how it is that it costs more to fly direct to Montreal than it does to fly to Montreal and then New York (Newark). It didn't not matter, really. It was just making conversation... Making conversation, as she was doing telling me she just went to market in her wheelchair. Anything to make conversation, to distract from it all...

Mum quickly put me through to brother. "Mum's been losing weight..." she's 41 now, down from 43kg a few days ago. It's strange why she's losing weight. Or is it? It's the cancer. It's eating her from the inside. She's being fed by the (new) carer. Too weak to eat by herself...

I did not flinch. I did not cry.

It's as if those words, the description of mum's condition, the talk about mum's eventual arrangements washed over me completely. A friend of mum's came to see her yesterday. She cried seeing mum. I heard what was said. But I did not flinch. I did not cry.

Am I unfeeling? Am I numb? Am I deaf or just suppressing it all? Perhaps all the feelings of pain, pain, deep deep pain is falling into a hole, a hole that is fast filling and will one day burst out...

What am I doing here, in this small town in the middle of nowhere? What am I doing being surrounded by open countryside, stars and such tranquility?

It's all so surreal.

Escape?

"There will be lots of trips to the ER from now..." my aunt said, almost as a matter-of-factly, and I felt it was somewhat unfeelingly, "It was like that with my father." The last sentence made me realise she has been through this before, she knows what it feels like. She knows.

I asked her what an elevated pancreas index level means. She's been a nurse for over twenty years. She thought about and told me frankly at this stage those indices and number don't really matter much any more. "As long as she's comfortable and feeling at ease, that's important."

And I know it. I know deep inside her, the cancer is eating her, wreaking havoc and spreading. I know, and dread to think about it. Slowly, bit by bit mum's health will decline till her organs become affected and deteriorate. It will be fortunate if there is not too much pain. Luckier if it does not last too long.

Being here in Canada, surrounded by beautiful mountains and a clear, clear blue sky almost everyday, it is too easy to forget what I have left behind back home. It is surreal in some ways, that I am here surrounded by all this peace and beauty, and to think of what I have endured over the past few months... Being here is a far world away from hospital wards, doctors and the sight of syringes and operating rooms...


I find myself, in waking moments and my dreams, whether I am escaping reality by putting myself so far away from it all. Am I being selfish again? Do I not care? It pains me to hear when I talk with mum on the phone how she wears diapers every night "just in case". What she must feel, what she must think, to see her own body deteriorate. Imagine, a proud person being physically reduced to skin and bone and being confined to bed most of the time... How she must feel...

38.7C

The ear thermometer kept on beeping and flashed red. A warning. Mum's body is burning at 38.7C.

The doctor told us to return to emergency when she has a fever. But she does not want to go.

The carer, brother and I are by her side. She is keeping mum cool with ice and a cold cloth.

It'll be a long night...

Downhill

"The nurse said she's seen many cases like mum's," brother said. I heard what he said, but there was no expression on my face. "And it'll only be downhill for now..."

I heard what he said, there was no expression on my face. But deep down, somewhere hidden from sight, I am hurting again...

One step forward, two steps back

Mum sounded so tired on the phone, so tired I could hardly understand her. She said she slept poorly last night, a contrast from the nights before when she slept relatively well.

"What should I being for dinner?" I asked. It's my "standard" question these days, now that I'm at home the majority of the time and visit her only in the evenings. She said she didn't know what she wants to eat, and that she vomited earlier.

It's very frustrating to hear that, and hear the sound of her voice. For the past few months, it seems to be one step forward, and two steps back as her health gradually deteriorates. You have days and moments when you think she looks so well, well enough to be discharged. And next movements, the next day, you see her lie there looking so tired, struggling to breathe with the aid of a tube...

I went to see her tonight, and we had a good hour or so of alone time together, something rare since the 24hr carer was hired. I lounged by mum's bed side and we chatted. Now and then, I'd hold her hand and massage her fingers, and move her arm and her hand close to my face as if to kiss them.

I remembered my ex sending me a letter he wrote to my mum sometime back, which I only read last week and promised I'd translate to mum. And tonight I did just that.

I didn't translate word by word, but the general gist of the message. My ex was appreciative of my mum, foe welcoming him to our home(s), and for also being an inspiration to him, he said. All these years, he's watched from afar as she fights against the terrible illness of cancer, and he is deeply touched by my mum's strength and courage, and ability to translate pain into beautiful memories and moments. There were various lines praising me, going as far as saying I'm the greatest "gift" of all. I guess in a way my ex wants to reassure my mum whatever happens, she has raised a wonderful son who will carry on her legacy, her kindness and generosity.

Mum was silence as I translated the letter, but there was a moment when she moved her hand to the corner of her eye. Afterwards I asked her whether she had anything to say, but she said she was too tired to think. "Thank him for his care..." she said, and closed her eyes.

Lump

Mum looked like she was in a lot of pain. When asked what it feels like, she cannot say. "Just discomfort all over..." The problem is mainly in the bowel area.

She asked me to rub some mint ointment on her belly, which to some degree would alleviate the discomfort of bloatedness she feels.

There was a visible and touchable lump to the right of her latest incision. It felt hard and abnormal. It was the source of much of mum's current discomforts...

"How hard it is on you..." I kept on saying to mum. It may sound condescending, trivialising, but not combined with the way I would rub mum's back whenever I said those words to mum.

It really has been so hard on her. She seemed to be recovering and was so hopeful toward the end of last week to be discharged, but her skin turned yellower and yellower, and her appetite (and hence also strength...) deteriorated and deteriorated...

Tomorrow a small surgical procedure is planned to insert a tube to drain bile from the inflamed gallbladder. That should relieve the bloated feelings and hopefully make the jaundice subside with time. After some googling online, I came across some startling news. Jaundice may also be caused by pancreatic cancer... Could it be? Could it be...?

How hard it has been for her, to be so tormented by her body, and over the past few months, to have to deal with issue after issue after issue.

I hope and pray, hope and pray that mum can go home soon, for she needs to be home, she needs to be reminded that there is a world beyond these hospital walls.

For the longer she stays at the hospital, the weaker her resolve is, the more she is growing weaker in mind and spirit...

Exhausted

Mum said she wanted to sit on the chair for a bit while she had a late dinner. I took the opportunity to lie down in her bed. Quietly, softly in my heart, I "blessed" the bed and hoped that it will allow mum to rest well, and to recover so that she can leave the hospital. Unknowingly, I fell asleep...

It was half past ten when I woke up again. I fell asleep even though I just wanted to take a little nap before hitting the books. Mum didn't wake me up because she saw how tired I was. But I don't think I was tired, at least not physically, for much of the day when I went home to rest that's what I did: I rested, in bed, drifted in and out of sleep, watching reruns of my favourite sitcom online (Will and Grace) or listening to the radio. So lethargic I have become, just lying there in bed watching a comedy or listening to talk shows and drifting in and out of sleep...

I am tired and frustrated. And I am sure mum is too. After getting our hopes up to head home (and I even began taking a suitcase of things home this morning...) the doctor came back and said mum's latest blood result revealed a below average red blood cell count, and an elevated bile level. The former can be fixed with better nutrition and the 500cc of blood transfusion, but the latter is trickier. There may be a number of reasons why her bile level is abnormally high...

The ultra-high nutrition IV (which was yellow in colour, btw...) that the doctor gave her a day or two before her surgery may have given her much strength and needed nutrients, but it also causes strain on the liver. With time, mum's skin and the whites of her eyes began to grow yellower. Though the yellowing has faded a bit, her skin is still quite a sickly yellow tone. The liver may be damaged from having to process the high level of nutrients, and it may take up to three weeks for the liver to slowly repair itself... Three weeks! It could be that there is just an accumulation of bile after the surgery that did not pass through the normal way through the intestines, and so the bile is staying in her body and turning her body yellow. This blockage of the bile duct could be resolved with the insertion of a duct to lead the excess bile out of the body. But it sounds like a complicated (and painful?) procedure...

So mum today looks more sickly than before, even though she has been able to eat a bit more than usual. She also said she felt very cold, which may be caused by the blood transfusion. She not only looked and felt more ill, she also was sad not being able to go home as planned.

And where is my brother now? In another part of the country, away at a time when mum is again having complications with her health...

I really am tired...