Saturday night...

It's been a day filled with agitation today, beginning with a restless night of sleep. The super typhoon that is skimming the eastern shores of the island brought vast amounts of rain throughout the day and night, heaviest during the night. Sleeping next to the window, I was woken up various times and disturbed by the constant pounding of the heavy rain and howling wind, which made me dream and dream...

And then throughout the day, I was feeling increasingly agitated being stuck at home because of the poor weather. I tried to work a bit, but was so distracted by thoughts and emotions. I maybe be physically here, but my mind escapes and wanders off to Canada, to my life and friends there, and I so long to be back there again in my own home, united with my cat. Seeing mum in pain and not eating much frustrates me too, adding to the agitation, coupled with the fact that we are living together in such a confined space for a long time, and I feel like I have no real privacy.

I know a lot of the agitation is my own doing... If I worried a little less, if I thought a little less, if I just longed a little less to be home, then I can calm my own mind. But really, like so many times before, being back here, I feel I cannot get any of my own things done because my mind is preoccupied with taking care of mum and making sure she's feeling alright.

I'm not complaining, because I chose to be here, and in times of need, and at various moments when mum tells me how much she appreciates my presence, I know it is right to be here. But, really, being here I feel somewhat like a prisoner and have little I can turn to for support or fun, whereas back home in Canada, I have friends close by, and all that nature and space around me I can loose myself in.

I know the feelings of agitation will pass, and I do feel better after a few solid hours of work and a bit of meditation. But deep down inside, I do long for and count down to the day when I leave here, and take my mum with me back to Canada....

At the radiology ward

Treatment number 13 today. While we waited, for the first time, mum said she was getting afraid. The pain in her throat has reached a point where she doesn't want to talk too much. "Well, you can write, and tell me what you want!" I joked, even though deep down, the side-effects are worrying.

Having been to the hospital every (week)day since I arrived, I'm beginning to notice the 'regulars' who go at around the same time for their treatment. There is an elderly couple, the husband of which is doing the treatment. Both have gray hair, and look healthy (besides the obvious affliction of cancer the husband is under treatment for...). I see them everyday, and the lady would nod and smile at me every mum and I arrive in the waiting area. I look at how attentive the wife takes care of the husband, how she hands him water, pats his leg, and it is a beautiful sight. Beautiful not only because of the care and devotion on display, but also because they (seem) to still have that strong bond even in old age.

Usually around quarter past four, a man in his thirties or so would be wheeled in by a nurse and left to wait alone. He would fidget with his phone, and strapped on a pole behind him are usually bags of liquids that flow into him through thin tubes. I remember the first time I saw him, around a week ago, he was still on his feet, and dressed in a nicely pressed suit. But with every passing day, his complexion grows weaker, more tired, and his face grows darker from sadness and (seemingly) from the treatment. Nowadays he wears a blue patient's gown, and today he had a thick blanket that covered most of his body. I was dressed in shorts and a t-shirt.

A frail lady, dressed in a pink patient's gown would be rolled in on her bed at around the same time too. Her arm is so thin it looks like just bones and skin. And yet, every day, she seems to have a smile on her face, a glint in her eyes. Another lady, in her forties, or less, very skinny, would already be sitting there and waiting. She too would smile at us every day, as she anxiously waited her turn.

There was a patient who was already being treated when we arrived today, and she was in the radiation room for quiet some time, perhaps longer than usual. When the thick door opened, slowly a middle aged lady, with sunken eyes and a forlorn look, walked out in the standard pink patient's gown. She had a red bandana on, but I could tell that underneath her head was completely bald.

I turned to look at mum, and leaned in close to stroke her hand. "It's soon over, mum, just one more today, and you have the weekend off. And after that, only three more to go. It'll soon be over..."

"Thank you," she said, "Thank you for being with me..." Just then, her name was called. I replied with a pat on her back, as we slowly walked into the radiation room. I took her handbag, her glasses, her medical mask, and watched from behind a red line as the radiation specialist and nurses aided mum onto the platform. A rotating machine with mirrors and laser lights loomed over her, and the nurse gestured me to leave the premises.

I left the room, the nurses left the room, and the thick door closed behind us. The red and green warning lights came on, accompanied by a low rapid beeping. Treatment in progress.

Treatment number thirteen...

thank you, dear friend

Night and day, you stalk my blog and pore over my words, feelings and thoughts...

You know when I am down, when I am crying, when I am afraid...
You know when I am up, when I am happy, when I am feeling brave and confident...

You know better than anyone else perhaps the details and little bits of my life that I hold so dear to heart...

I tell you you shouldn't be so worried or concerned about me, but you tell me you can't stop caring, or even loving...

So I want to say to you, as I have already said so many times before...

...for listening to me, for being 'there' for me even when I am not with you, for giving me comfort and making me feel like I am not alone, for letting me cry and unload when I need to...

...and for being a friend, and so much more to me.

rough morning

Breakfast was a bowl of black bean soya milk, cereals, melon, watermelon and hardboiled eggs. It took over an hour for mum to finish her meal. Again seeing her in pain hurts and frustrates me so terribly...

It was the frustration that led me to burst out "why are you not eating enough?" I know she is really trying, I can only imagine how painful it is to swallow every single time. It's like a knife is cutting her throat everytime she swallows, she described it "you can never understand!"

It wasn't an argument, but I was unfairly pushing her too much. She really is trying to eat as much as she can, but just the pain is unbearable that she loses her appetite. But seeing the intense pain on her face, seeing her leave food on the plate worries me... And in a way it sort of shows that perhaps I'm not doing enough to take care I her, and that I've failed my purpose of being here...

We spoke and chatted about things, about how this illness has affected our lives. Who would have thought that half a year into retirement she would be in this state, instead of enjoying her life and celebrating her hard work throughout the years? Who would have thought that instead of enjoying life, life has become almost daily visits to the dreaded hospital and oncology ward?

I had to cry when she said sometimes she wished she would 'go' soon so as not to burden me any longer. I thought of my friend who just lost her dear, dear mother... And the thought of mum leaving without me knowing is too much to bear. "I don't want you to see me in pain or suffering... I just want to go quietly...."

Nobody knows how one will go or when, but not being able to be at her side, as I was at my dad's bedside when he slipped away from me quietly, scares me greatly. Perhaps premature, but I can feel the guilt and shame if that were ever to happen.

With tears in my eyes, I told her again that I'm sorry to push her so hard and to get frustrated if even angry when she does not eat. But can anyone imagine what it feels like when someone you care about and love so deeply has such difficulty in performing even the simplest of daily functions, like eating and drinking? "I really hope you will get better soon, and that you'll be able to get back to 'normal' life...."

She deserves it, she needs it.

As Impatient and frustrated as I am, I know deep down it takes time to recover and to heal. But the process of watching her suffer and cringe is such a grueling test that is driving me insane, and to tears.

Dinner time

Quietly we sat at the dinner table, and I watched as mum painstakingly took a tiny bite of won-ton, chewed, and swallowed. She immediately screwed up her face in pain and agony, what degree of pain or agony I could never really feel nor emphasise with. She took a few more bites, had a bit of tofu, drink a bit of soya milk, ate a few cherry tomatoes, and that was dinner.

I looked at her, annoyed for some reason, even though I have no reason or right to be annoyed. I wasn't so much annoyed at her, more at the entire situation. I would like her to eat, eat a more balanced diet so she wouldn't loose more weight, so she can gradually her strength and health in preparation for traveling. Yet, with each radiotherapy treatment, she feels her throat ache more and more, and the expression on her face whenever she swallows, even if it is just a sip of  water is unbearable to watch. With each radiotherapy treatment, it is as if the planned trip is getting a little more uncertain...

"It's not that I don't want to eat," she said, "It's just it hurts a lot every time when I swallow". She put down her chopsticks, and said she knows I mean well. Softly she recounted how, as a child, she used to worry whether I ate enough, whether I was healthy, whether I was ill, whether I was cold, whether I was too warm, whether I slept well and slept enough... Now, it is I who worry about her. "It's funny isn't it, how life changes?"

Funny, yet in a way extremely, extremely moving.

Child...

It is cruel, just plain cruel, and if there is a God, I sometimes wonder if he is laughing...

As I left the oncology ward, I came across a bed half covered with toys. A young lady was leaning over the bed, whispering softly, "Mum is here with you, my little baby... Mum is here with you..." I walked past the bed, and everything seemed to slow as I took a look at the bed, at the mother, and at the child.

It wasn't a child... It was a baby, wrapped around with a pink blanket so tightly in a bundle that I could not tell if it was a boy or a girl or how big the baby was.

But it did not matter, what mattered was that it was a baby. A baby, a newborn who was just granted the gift of life, and yet is fighting for it, is suffering for it, is probably going to lose it soon. Harrowing...

The mother's voice softly whispered again, "Don't be afraid, my little baby, mum is here with you..."
My heart ached so, and I blinked hard to blink away the tears. I choked...

Her voice was soft gently, so very soft and gentle, yet what must she be feeling deep down inside...? What fear, what worry, what sorrow and grief to see her child in this state, lying in that bed, being in that hospital? Next to a rattle was a bottle filled with yellowish chemicals that flowed into the tiny body. Next to a puppet was a device with all sorts of tick tubing coming out of it and connected to the baby like the frightening tentacles of an octopus.

"Fare well, little child..." I whispered lowly in my mind, "Fare well, and may you be free from pain and suffering..." My hand unconsciously lifted as I waved silently at the bed with a sick baby and the mother leaning over and whispering...

restless night

I went to sleep late, even though my eyes were already closing. Late, because I was reading and trying to stay up while waiting for a friend to call.

Eventually, close to midnight, I lay down, but had my phone by my side, just in case. I write to her, telling her not to hesitate to call at anytime, because I feel she needs someone at this moment....

Though I slept, the night was so restless, as I kept on waking up, afraid I had missed her call and slept through while she was hoping to speak to me. I dreamed... Of her, of how distraught and grief-stricken she looked, and in my dream I so wished I could just give her a long, warm embrace to comfort and console her... I think I ended up crying at one point.

Come morning, I woke up and checked my phone. She hadn't called, but she did briefly write me an email, in which she described the last few days. She hadn't slept properly for days, and feels so numb and exhausted... Crying, mourning, and having to bury her own mother after bathing her... Her naps are disturbed by images of her mother waking up....

I swallowed hard reading her email, swallowed down my tears, and could not fathom how very, very difficult ad painful a time she must be going through....

Just then mum woke up, and went into the kitchen. I followed her with my eyes, grateful that she is relatively well still, but at the same time reminded myself that one day I will sit in this apartment alone, and all I will see is a memory of mum walking into the kitchen...

Treatment number 10

She went in a little after eleven. We left the hospital together just before five. A lot of waiting, sitting around, just waiting to be seen. I was with her most of the time, keeping her company, trying to be cheerful, even though hospitals are not very cheerful environments. I held back my tears when a child, not more than four or five, with great frailty and difficulty, slowly limped hand in hand with his mother into the oncology ward...

First was an appointment with the neurosurgeon, who last time recommended that she undergo surgery to remove the tumour in her spine. He pulled up a detailed MRI image of her body as seen from the side. I could see her esophagus, her neck, her brain, her organs... and I could see her spinal column. One, two, three, four, five, six, seven down, the doctor counted. Yes, there it is. That section appeared to be darker than the rest. He zoomed in, approached the region from different angles and used different contrasts of black and white to enhance the image.

Yes, there it is. The tumour, the 'enemy', the cause of so much suffering and pain on her part, and so much worry and tears on my part. Seeing it again I felt a heat of frustration rise within me. I wished I could tell it to please go away. I so wished it would somehow disappear and leave my mother well alone. I looked at it, and there it was. A lump, an odd-shaped ball probably no bigger than a tennis ball if it were flattened and compressed up against the spine.

Surgery is not urgent, at least not at this stage. Somehow, there is relief to be found in the doctor's words. Yet in that relief is the possibility that if the tumour grows and grows, or even spreads, if mum starts to lose control of her left arm and hand, she must immediately report to the hospital for surgery. When will that day be, if it does come? That is another great, great uncertainty of life. At least, the good news, if it can be considered such, the tumour is not inside the spinal column, as suspected before.

As we waited, we spoke about family and children. We spoke about brother and my sister-in-law, about their lightning meeting and marriage, about how they are soon to have a child. Around us were husbands and wives, couples, one person would typically be in a wheelchair as the other person pushed. I looked at them, at the tender care and love that was being provided, and wondered to myself whether if one day I should grow sick or old, I would have someone loving and caring by my side.

Suddenly, out of nowhere, and as if answering my thoughts, mum said "Whoever has you is lucky to have you..." Well, of course she would say that, she is my mother. But is there some truth in that that I also recognise? I thought about how I am taking care of my mother, how I have in the last few years tried to be there as much as possible in order to give her comfort and support. My love and affection moves even strangers to comment, and touches friends and relatives to tears. But I would do the same for anyone, and I would give myself fully to anyone who is in my life, without hesitation, without wanting anything in return. I imagined my future partner, whoever he may be, whatever he may look like, and imagined how I would be there for him, devote myself to him in so many ways. For this is me, this is who I am, and deep down I can see the beauty of this side of me.

Together we walked to the radiology ward for her next appointment. Some patients came alone, others were accompanied by their loved ones or a caregiver. I waited with mum until it was her turn, and I accompanied her into the radiation room. Before she climbed onto the platform made of cold metal, I patted her back gently, gently, gently again and again. I do not know what she is feeling inside... was she anxious? Was she afraid? Would she feel claustrophobic under that mesh-mask which has to go her entire head and her face to constrain her head from moving too much? I hoped my gentle pat would take away whatever fears she had. She lay down, the radiologist began preparing the gigantic machine, infra-red lights came on and scanned the length of mum's body as if it were a barcode at the supermarket. A number of number flashed across a screen, and the lights dimmed as I was ushered away and into the corridor...

The heavy door closed, and green and red lights came on, warning people that radiation was in progress. I counted the seconds.... ten... twenty... thirty.... thirty-one, thirty-two, thirty-three... each passing second felt so long, so very very long... thirty-four... thirty-five.... each passing moment seemed to last forever, and my mind imagined mum with her eyes tightly closed. Would she feel pain? Was she in great discomfort? Is her throat acting up? Is claustrophobia creeping in? .... thirty-six, thirty-seven, thirty-eight.....

....thirty-nine, and the warning lights dimmed. A few moments of rest, and the warning lights came back on again for another thirty to forty seconds burst of radiation. Targeted rays of radiation aimed at eliminating, killing, reducing the size of the tumour, at the 'enemy' I had just seen on the computer screen an hour or so earlier. It is an ongoing battle, taking place inside mum's body, against mum's body, and I am but a bystander, but someone who can only watch and who cannot control the outcome of anything at all...

The heavy door opened, and I rushed inside to see mum slowly get up from the platform. She blinked her eyes heavily, and looked tired, even though the entire procedure lasted around five minutes or so. For her, it must have seemed to last hours. She put on her shoes, nodded to the radiologist and nurse in thanks.  I took by the  arm and led her out of the ward, led her past dozens more patients waiting their turn, waiting and hoping that the treatment will somehow prolong life or at least make it more bearable. 

Some patients were alone, others were accompanied by a loved one or a caregiver.
Mum and I walked slowly home.

Treatment number 9

Again, at close to four in the afternoon, mum and I walked slowly into the radiology ward. Another week begins, another five days of treatment. It's becoming like going to work, every single day, and the weekend she has off. Her throat ache is worsening, and now even swallowing her own saliva or drinking water hurts. As the doctor said, it will get worse before it gets better...

 Often the throat ache will cause the person to lose all appetite, and in the last ten days or so, ever since she began radiotherapy, she has lost three kilograms already. It is extremely worrying, as the doctor said some people lose up to ten kilos due to the treatment. Hearing that instilled fear in me, especially as I can see how eating and drinking has become such a (literally) pain-staking affair for mum. Every meal, I try to prepare something nutritious and make sure that mum eats well. But it really, really pains me to see her grimace and close her eyes from the unbearable every time she swallows. It hurts to see her obviously in pain performing such a normal every-day function as eating and drinking. Seeing her like this I too lose my appetite.

Sometimes, the pain of swallowing is so intense that I can see sweat emerge on her forehead. I try to cook 'soft' foods, often in liquid form, and this is where the blender comes in handy. And whenever mum finishes the food I have prepared for her, there is a sigh of relief that at least for this meal she has managed to eat, and that she will slowly regain her strength, or at least maintain her health. However, for the last two days not only has she had difficulty ingesting, on occasion she has also thrown up randomly for no particular reason. All this seems to throw the planned trip with me to Canada next month into question...

At the oncology ward, almost everyone is thin to the bone. A lady today, probably not much older than my own mum, was wheeled past me on a hospital bed, her arm so frail, so thin I thought it would easily snap. A middle-aged man, whose skin complexion was dark like charcoal, most likely from long term radiotherapy, sat on a chair in the waiting room. So thin he was that he reminded me of someone from a refugee camp plagued by starvation. Mum is somewhat 'lucky' that she has not reached that state yet, but her sores and conditions still troubles me greatly.

So just after her treatment today, I made an appointment with a nutritionist, who is only in the vicinity on Mondays. Luckily we managed to see her without much waiting, and for the next quarter of an hour or so she went through mum's eating habits. The diagnosis is that she is indeed not eating enough, especially not enough proteins and carbs, and if this continues, she will lose more weight. The nutritionist advised taking protein and carbs in powder form to supplement her diet, and these can easily be added to smoothies and juices I make for her without changing much of the texture or taste.

Gratefully, I thanked the nutritionist again and again, and now I am a little more confident about taking better care of mum in the coming period.

Pangs of guilt

They were such intense dreams, that woke me up numerous times during the night. Dreams that filled me with such guilt, such shame, and such fear of losing something… losing someone. Losing my friend, my ex, losing the person who knows me better than anyone ever has…

I would sleep, and wake up, disturbed and restless… I would sleep again, and wake up, again, agitated and frightened. At just after six in the morning, I finally decided to get out of bed.

The guilt and shame plagued me long after rising, and I was so nervous I could not eat much. After a few bites, I went to write an email to him, telling him how terribly sorry I feel. I am dwelling in the past, dwelling over events and actions that have already taken place, dwelling over words that have already been said. But I do feel terribly guilty about all the things I have done and said to hurt him, to push him away, when in fact, more and more, I realise I want him close to me, I want him to be part of my life.

Did I push him away? With my withholding, with my rejections over the last two years, did I push him away that he has a hard time believing how much I feel for him and care about him? He cared and loved me once, but now that feelings even if strong, has diminished. And there is doubt… doubt whether I am the right person. I contributed to that doubt, and now, being in limbo and being caught in between this twilight zone between lovers and friends, I am feeling so fearful, so guilty…

What we have is so beautiful, so very special… the friendship, the strong memories, the connectedness and levels of intimacy I have never felt toward anyone. Ours was always the perfect relationship I have longed for and heard so much about: one of love built on friendship. Or at least it could have been. And yet, I seem to have soured that relationship by trying to stifle the love that was obvious to develop when for the longest time I tried to hide to myself, hide to him, my feelings toward him.  

I wrote to him, apologising for my past wrongs and faults, asking for forgiveness. I sometimes wish I could turn back time, and undo the hurt that I have caused… I sometimes dream of the beautiful possibilities, the lack of complications we would have had if I had said “YES!” when he first proposed to be with me late 2009… but I am powerless to change the past. Hence the guilt and remorse I feel at this very moment…

I hurt him, and now I am hurting back… I am hurting because the guilt and shame I feel now for having done so many things terribly wrong to hurt him. What I am feeling now, this uncertainty, this sickness from fearing I will lose someone so dear and close to my heart, this feeling of being so lost and confused; I caused him to feel that way too. And it is a feeling that is torturous and seems to know no end… This is karma coming back to haunt me, to fill me with remorse and agitation.

I apologised profusely when we spoke on the phone today. He told me I was being “silly”, and that he had also done things to hurt me. But somehow I feel as if I am the greater evil, and I have failed him as well as myself. As usual, he was understanding, and he held out his hand to virtually give me a stroke—the way he would to comfort and reassure me.

We talk and joke on the phone as if nothing has changed between us… at least from my side, it seems like we are just having another conversation like we have done every day since we became a couple. But things have changed… for otherwise, why would we be in a situation of feeling so awkward and so confused about our feelings for one another? If the friendship, the love is so strong, why are there still doubts and hesitation?

I cannot know the answer to those questions, and I could never ask him to reply, just as I could never turn back time and undo my mistakes and correct my failings… Just now, I am suffering and hurting, because of the hurt and suffering I have caused to another… and that is a terrible feeling I know now.

Good night

I sprinkled a few drops of lavender oil around her pillow, something that has become a sort of ritual before she retires for the night. I fluffed the bed and pillow a bit, took away any fallen strands of hair just as mum is about to lie down. 

As if in passing, she mentioned that sometimes she feels pains around her waist, and she pointed to me the general area as she talked about it. Her last body scan revealed a lump around that area. A hemangioma, or  benign tumour of the blood vessels. Even if benign, with her condition, it could easily became malignant. And that thought gripped me for a moments, making me freeze. But perhaps my tiredness and sleepiness numbed my emotions, I did not think too much of it. What could I do really even if I worry and fear...?

“Thank you,” she said, “You take care of me so well…” For one split second, I had this thought flash through my mind… who is the mother, who is the child? Have the roles been reversed now that mum is older? I am not complaining, it is just an observation that is surprising, and very moving. To think that some two decades ago, I was the one being tucked into bed at night, I was the one who received a stroke on the arm and a pat on the back. And now, I am doing that as I wished mum a beautiful and peaceful sleep for the night, hoping that her pains and aches will not disturb her sleep too much this night.

Another day gone by, and time to sleep before a new one begins.