Sleep well...

I was talking to brother about the ever-growing problem regarding my visa to return home, when mum woke up. It was one in the morning her time. I thought as she was up, might as well speak to her  a bit.

She was in bed, and said she didn't really sleep at all. Restless, lying around and thinking... Perhaps like me last night. I did sleep till after four in the morning, after crying and listening to dharmma talks online. Perhaps mum is worried about my visa status, and yesterday when I spoke to her, she said she felt guilty for causing me so much "trouble". She told me not to go home again, but that is completely out of the question. How can I not go home and see my mother one last time? How could I ever live with myself if she were to move on without seeing me and without me by her side...? The pain would be so immense it would forever change my life...

Mum said she was hungry, and wanted so warm soya drink. She had difficulty propping up the pad, perhaps because it was too heavy for her now, so I could only see a corner of her face. She looked so painfully, painfully thin. Bone and skin, bulging eye socket and sunken cheek bones. But she is my mother, still my beautiful, beautiful mother... And I love her so, I care about her so, whatever she looks like.

"I didn't really eat much today. Not feeling like I have an appetite..." she said. I told her she should still eat a bit, eat whatever she can, eat many meals spread out over the day. As I said that, I felt I was being hypocritical, and I cried. She did not see that. Hypocritical, because I too have been eating very little, I too have lost my appetite. In fact, I feel like throwing up when I eat, and that is very severe.

"OK, go eat something, and rest. Listen to some music to relax. Don't think too much..." I said. I just remembered now that if I were there, I would add a put a few drops of lavender scented oil around her pillow. She always loves that smell, that soothing, calming smell. And she usually is able to fall asleep quicker being surrounded by that scent.

"Goodnight, mama... Sleep well," I wished her.

Losing her taste

Mum sounded so weak on the phone today. It was just past eleven in the morning, and she said her cousin had just left after visiting briefly. The cousin came to chat with her a little bit, and when she realised mum was tired, she left.

Mum revealed she did not feel well. "My taste is going, and I have little appetite..." That is worrying, because she's already so thin, so frail when I last saw her, and she told me last weeks she lost even more weight. If she has little appetite, how is she going to get her strength back...?

She said she vomited a couple of times yesterday. More than usual. Mostly stomach juices, but also when she ate. It sent a pang of shock down my spine. Is it already so soon? Is it already as the doctor predicted...?

"If there's anything, I'll let you know..." mum said weakly.

"What do you mean?" I asked.

"Nothing, we'll let you know..."

There is something. Brother wasn't around to talk to, so I couldn't know what was wrong. But something is up.
"Just go to sleep, it's late..." mum said.

Before I could say anything else, she hung up the phone.

Something is up...

Silences

Mum sounded sleepy. She said she is feeling sleepy every day. It's because of the painkillers that the doctor has prescribed her. She sleeps well, which is a good thing, but she can sit there and just doze off.
As she talked, her voice was frail and halting. I strained to hear her.

And there really wasn't much to say after she told me about her day going to the park in the morning and sitting by the computer. She did complain a bit about the new carer (the old one was fired because she used mum's computer and wore mum's shoes without even asking permission... And she was too young and somewhat incompetent...), who is attentive and does a good job helping mum with her daily needs, but is a lousy cook. She sounded like she was straining to talk, as if every word took great effort and energy...

I told mum my day, about playing tennis with friends and how I was reunited with my cat again. And I told her about the unseasonal hot and humid spell we have been having for a couple of days. That was the end of the conversation, followed by awkward silences.

I spent an hour or so writing to a friend who lost her mum to cancer last year. She said she still has difficulty coping, and that she sometimes feels like she was left alone. Reading her message added to my fears and anxieties... will I too feel like the world has collapsed once mum leaves me? Will, like my friend, just break down and cry so hard when I think back to memories of mum? I wrote to my friend, describing briefly how life has been over the past two, three months. But my words felt so inadequate, felt so unfeeling. They did not do justice to all the motions and experiences that mum and I shared. No words can ever recount how difficult, and yet touching at the same time, this entire episode till last week in Taiwan has been. The way I wrote and described the events felt like I was narrating a story, but in a way that was sterile and weak, in a way that removed all humanness and heart-felt emotions of the entire experience, that robbed all the suffering, the fears, tears and glimmers of hope of all meaning...

Perhaps I am just too tired. Too tired to write these days, too tired to describe what I am feeling inside. Too tired to structure my thoughts and emotions, and out pours words that when I come back to read are so confused and disjointed. Words that do so little to capture the state of insecurity and longings for liberation and love I truly feel inside.

Return to ER

I called home almost as soon as I got up. Brother didn't want to tell me, but he did anyways. "Mum went back to te hospital today. The bile juices are flowing out."

It's serious. It means the tube they inserted into the intestines in an attempt to lead the flow of bile naturally out of the body is not working. Perhaps the tumour is compressing on the tube too much that the flow is restricted.

Mum sounded tired, and she said she was tired. She went to ER, and was transferred immediately to the 11th floor where she had been staying all this time. They put the bile collecting pouch back on, so she will have to walk around with that now, until another solution can be found. But I suspect there is no other solution...

The conversation ended. Mum told me to study hard, and wished me good morning. I wished her goodnight.

When her voice vanished, everything else, her condition, her illness, her pouch, her smell, the warmth of her body seemed so far away.

I am so far away...

Unfinished business

04052012.0138

So many things going through my mind right now... The nature of my random thoughts and disjointed writing style shows just how very scattered and lost my brain is...

I fell asleep, and managed to "sleep" for ten minutes, but was suddenly jolted out of sleep, and now am wide away at 1.42am...

The fact that I am leaving here in a little over 72hours is disturbing me. I feel like there is so much I still need to do, so much I still need to settle before I can board that plane with ease of mind...

Now that mum is/may be leaving hospital and heading home, I need to make the place safe for her and get special equipment in the washroom and toilet to make sure she can safely take care of basic needs. And I will need to tidy up her room, place the new mattress I bought for her on her bed before she returns home. So many things I planned to do before i left home today in a hurry. I never thought mum would be discharged so soon...

...and who will assist her when she showers? Or when she goes to the washroom? She is so weak she can hardly get out of bed without help, without someone having to " lift" her up. Her thin, frail arms have so little strength to prop her own body up...

And who will cook for her? Who will make sure she gets enough nutrients to restore her body to some degree o stable weight and relative good health? Who will monitor her eating and drinking? All I can hear is brother saying "I don't know what to cook..." What can he do then? What is his role in the picture and in the coming two months?

We can maybe ask the carer who's been with mum for the past two weeks to come for a short period of time. But in the long run, we will need to hire a long-term carer to stay with mum due to costs.

All these things here to be done and to think of. But I will have to think of my own life and my exam in a little over ten days!!!

Morphine

Morphine
06042012.2150

Mum said she hardly slept last night. She looked so tired, though her eyes seemed to be wide open, as if she saw something that alarmed her.

The way she spoke, she sounded like she was tortured beyond imagination, as if she had been kept awake by something, even though she desperately wanted to sleep, but could not.

"The ceiling, it was tumbling down! I saw it...!" she exclaimed. She pointed to a part of the ceiling, where a tile was raised a bit. "I was so scared..."

It is painful enough to see mum be so tormented by her bodily discomforts. This morning I encountered for the first time what it feels like to deal with someone who appears to be seeing things. A friend of mine told me how difficult it is to deal with a family member who is losing mental clarity, how painful it is to see someone's thoughts and logic deteriorate. I wondered to myself what is worse... to see your loved one's body waste away, or to see your loved one's brain rot away. And what does it feel like to have to deal with both?

Luckily though, as the anaesthetist reassured me, mum's delirium and "seeing things" may be attributed to the morphine drips that has been administered periodically since her surgery. It's supposed to remove the extreme pain from an open wound that has only been stitched together. But morphine used on some people can induce delirium, hallucinations and dreams. Perhaps what mum is experiencing, her many and random dreams over the past few days, and seeing things like the ceiling collapsing, is due to the morphine. Once the drugs wear off and is stopped completely tomorrow or so, she should be back to "normal".

But a thought did cross my mind... As the cancer progresses, there may be a day when we have to rely on morphine to make mum's life and body bearable. The dosage this time is administered in a controlled manner, and adjusted according to her level of pain. But look at the effect it already has on mum's mind and sleep... Could it be that when that day comes, when mum has to rely on morphine to advance her quality of life that she could become even more lost and be even more disturbed by the sideeffects?

Exhausted

Mum slept most of the day yesterday, and most of today. The surgery is exhausting, and the doctor said it's good for her to rest as much as possible. The intravenous painkiller, which slowly drips into her body, and the dosage of which can be increase at a touch of a button, not makes the pain from surgery more bearable, but also induces sleep and drowsiness. The 72hour period of observation is still not over, and mum's health is still fragile, despite the extra dose of IV nutrients they have been giving her since the day before the surgery.

I too am somehow very tired, even though I went home to sleep last night. It helped that there is a professional carer who can attend to mum's needs, so I can be less anxious and more assured. But even so, I slept badly and woke up a number of times. I came into hospital at seven in the morning, just to make sure I don't miss the doctor. As mum slept, I sat next to her and read, but I could not overcome sleepiness either...

Was the runup to surgery and the whole day yesterday really that exhausting, not just for mum, but also for me?

First day back

Mum was still very sickly this morning, but by late afternoon she got gradually better. Her neurosurgeon came to see her twice today, once in the morning to arrange for a CT scan, and later in the afternoon to tell her the wound from the surgery she had two months back is healing well. As for the cause of her vomiting, the neurosurgeon suspects that it's due to the steroids she has been taking in preparation for and straight after her cyberknife treatment. The steroids are supposed to protect against nerve tissue damage when the patient is radiated with gamma rays, but too much steroids in a short period of time may cause the stomach and digestive system to become irritated or even damaged. That may be the reason why mum has been throwing up profusely over the past week or so. May be... The neurosurgeon would like keep mum in hospital for a few more days to observe her condition. And an endoscopy is planned for the coming days to double check there is nothing seriously affecting the stomach.

It's a relief to see mum's condition stabilise, for last night, especially late at night, and this morning, there were moments I thought that her body would become so weak it would go into a seizure. There were such dark shadows around her eyes, and her speech was slurred. Going to the washroom took great effort, because she wobbled when she walked, and swayed when she stood. There were moments when I thought, pessimistically, that perhaps this is the way it will gradually end, and I was even checking flight times and wondering whether to tell my brother to return home. But we're not there yet. We're not there. Yet.

After a twenty-two hour shift, I went back home to take a nap and shower. Again, it felt like those first few days, of poor and disturbed sleep next to mum on the foldable chair-bed, and of having to be constantly awake and aware of mum's condition and whereabouts just in case she should faint, or worse. I was drained when I got home and collapsed into bed, mum's bed. And it was the first time I slept in a bed for over a month. It was beautiful, my nap.

As my sister-in-law and nephew came back to visit and stay with us, I returned to hospital with a surprise for mum. "Your grandson kept on saying she wanted to see you!" I told her. Of course, he's just six months old and can only drool and make babbling sounds, but mum found that funny. In the courtyard of the hospital, mum, my sister-in-law and nephew sat and chatted. I sat and watched, witnessed and committed to memory the beautiful smile on mum's face as she played with and admired her beautiful grandchild, the source of her hopes and untold joys. I watched and was touched by the interplay between mother, child and grandmother, and smiled at the way they commented how cute the baby has grown, how active and curious he has become. All the while, my nephew looked around him with big, wondrous eyes, unaware that his birth, his presence, his laughter, the grip of his tiny little fingers have been like a precious medicine to ward off the debilitating effects of cancer.

Mum lay in bed just now, her eyes so weak and tired and hard to keep open, but still she said something very touching. "The way you take care of me, I have earned a few more years. I can see my grandson grow up, I want to see you settle down..." There was hope in her voice, and that was perhaps the most reassuring sign in over a month, since her health began going downhill just after the lunar new year period. There is hope yet, because this lady, my dear, brave mother is still fighting. My dear, brave mother still wants to live a few more years.That is her hope, her dream. Whether life will give her the time and the chance to realise her dream is not up to us...

"I hope those few more years are happy ones," I said to her as I patted her back to soften her sore muscles and ease her into sleep.