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| Chiang Mai holiday, post-op 2019. |
It’s only when I know my eyes are open, because I have some peripheral vision and I am able to move my eyes to see, that it registers in my mind — I am alive, and it’s about all I can do to acknowledge I have not died. The relief is swiftly followed by an equally quick return to sleep, or unconsciousness, I just don’t know. My mind just cannot tell time or place. When I next become aware of some things that are happening around me, I can tell I am being given a wet towel wipe-down by a young woman, whose appearance suggests she is from Korea or China. She is the first person I become aware of. My mind opens up a bit more. I am able to compute this is a nurse, I am in post-op recovery.
I realise I am naked, and the woman is very gently wiping between my legs. When I look down, I see a urinary catheter. The awareness of it is like a jolt to the mind. I have never had such a thing before and I am nervous. The tube going into my penis looks very big. How did they get that thing in there?
Another figure is in the background, even younger, a man from either the Philippines or Indonesia. He is watching the female nurse. Clearly an assistant, I tell myself. Maybe she notices the look of concern, maybe she has just been waiting for me to get my bearings, but the woman says: “Mr de Cruz, you are in the intensive care unit of Royal North Shore. The operation is over. Not to worry. You’re are doing fine. We’re just cleaning you up. I’ll give you some medicine, then you can go back to sleep.”
Are you in pain, she asks. I smile as I nod sideways. She looks like the most beautiful thing ever. The Madonna. I say, “My wife is Chinese also. I must remember to tell her about you when she comes tomorrow.” I smile again, a big grin. I remember thinking, “God! What are you doing? She might think you’re flirting.” She’s wearing a mask but I can tell by her eyes she smiles back. And I remember that the last person I saw before this was also wearing a mask. And I could also tell that he was smiling at one point, by his eyes. It was my anaesthetist. I ask the nurse, “Did everything go alright in surgery?”
“All your vital signs are good. There is no bleeding. We have given you a catheter to drain the bladder because you’ll be in bed for a few hours at least and you shouldn’t walk. Your doctor will visit you early in the morning and he’ll tell you everything.” I am the happiest man in the world. I guess Samra has already called Helen. She must be so relieved. I am even happier because I know Helen and Sara are by now well into the job of informing everybody that I have come through. It is early in the morning on 24 March 2018, when I look at the digital clock on the wall. It is more than 12 hours since the anaesthetist put me to sleep.
*****
The next morning, Helen wakes me with a big smile and a kiss. “Hello, bee. Mmmm. Love you, nee.” Then she tells me what I need to hear: “Everything is alright. The operation went well.” It’s such a warm feeling. I know she wouldn’t be this much at peace, smiling from so deep within, unless it’s good news. She tells me that Samra called before 10pm the night before to say everything has gone well, better than might have been expected, much better than feared. I still have my pancreas. He was able to just excise the tumour. But Samra has had to summon the cardiac surgeon on-call that night to help the team manoeuvre past a particularly delicate collection of arteries and veins.
That same cardiac surgeon has called on me while I have remained asleep in ICU, during Helen’s visit. He said to her: “I wanted to see the face of the man I operated on last night.” On the operating table, I had been masked up, breathing through a tube, unidentifiable, anonymous but for the patient ID on a clipboard. He related how Samra had called on him during a particularly delicate juncture of the procedure. “There never was any real worry,” he said, “but Jas (as Samra is referred to) wanted me to do it.”
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| Cotswolds, UK, 2016. |
We talk a little bit more and Helen helps me understand things a bit more, clear away some of the fog. I become aware of tubes coming out either side of my stomach, one in the middle, two in my neck. It is only when they wheel in a big bag and connect it to the tube going into the middle of my stomach that I realise I will be fed by tubes. That’s still hours ahead.
Two days later, when I can stand in the post-op ward, the man in the mirror will look like he’s had extreme body-piercing — the tubes coming out of my neck have little surgical-steel rings attached. I remember thinking, “This is heavy-metal Rastafarian.”
The next day, I check out of ICU, much sooner than I had expected, faster than I would have liked. I keep thinking I should have just a bit more IC before they move me out. Other than the wet-towel cleaning routine and Helen’s morning visit, I don’t remember very much at all about those 30 hours or so in ICU.
Making the transfer to the post-op ward is like going through customs and immigration. The nurses exchange papers, the ICU nurse briefs the receiving nurse on the medications I have been given, the readings that have been taken. Then it’s the handover. The nurses in post-op immediately give me a sense of assurance, security. The routine they fall into tells me I will be in good hands, they will be watchful. Within a few hours, I realise they will check on me several times a day, sometimes quietly recording the numbers displayed on the machines around me, other times making small talk. I get the sense they are gauging how alert and aware I am.
The tubes on either side of my stomach drain away the blood and whatever else may collect in the abdominal cavity during and after the surgery. I am aghast at how much collects, how quickly they have to change the draining bags. Even the bag attached to my urinary catheter is changed every few hours because of the amount of saline I am being fed. It’s all good, the nurses assure me, because it means the body’s ability to flush out the waste has not been impaired.
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| Post-op at Royal North Shore: "Heavy Metal Rastafarian." |
A strict recovery routine is basically enforced by the third day. Exhausted, somnambulant, I have to do a series of exercises to get the blood flowing, aid my healing. My entire digestive and intestinal system has been gutted, renovated and rebuilt; some of it has been removed. The enormity of what’s happened begins to dawn. It shocks and threatens to depress me. The D-T1 diagnosis comes back to hit me like a rock. I keep thinking I will live on a baby’s diet of soft food, no spice, no chilli, mostly fish for the rest of my life. Beer and wine may be alright. Whiskey is out. It takes a while to find the emotional strength to remind myself, I have pulled through. I am alive. But even that doesn’t help me answer to that question, Alive for what? D-T1 stalks me like nothing else before. The mind is cruel. Just when you need respite from full realisation, it whacks you from behind like someone has swung a kanda stick to the back of your head.
I turn to the one thing that has mostly remained the salve that comes at no cost, presenting peace and comfort on a tray even when I have nothing to exchange for them. It’s the only thing that never haunts me when I close my eyes — music. The Google Home Jeff and Wah Lee have given me, the amazing musical archive that is YouTube and Spotify all come together to offer the best no-questions-asked escape there is for a guy like me. Music puts me to sleep, it’s my alarm and it’s all there at my beck and call any time of day or night. Next to sleep, it’s the most organic healing I can think of, and I draw on it like it’s on transfusion.
Weeks later, when I am told by my GP, Magar, that I have had a new eco-system installed in my body, he tells me I have to be patient. It can take years for some people. In the rock-hard cynical state of mind that keeps visiting itself upon me, I define his estimate of time as anything from two to 10 years. How does that help? It doesn’t. And I’m not referring to Magar. I am referring to myself. While I realise my impatience is an ungrateful impertinence in itself, the idea that healing is a vague idea, with no parameters or time-frame, leaves me feeling drained of strength and will.
I keep telling myself that I am not helping myself, and I will have no one to blame if I embrace the darkness. Then, like how we used to learn our multiplication tables by rote, by sheer repetition, the constant mantra I throw at myself begins to find ground in my psyche. Unmistakably, it slowly becomes a strengthening constant. There are some thoughts that the strongest ill-conceived will cannot deny. For me, it’s the absolute truth of being alive. I am here. I can walk, eat, and soon I will be able to play the guitar. Maybe, after all I have been through, my voice will resemble that Leonard Cohen sound, when we saw him in Sydney. He was 80 then, and he came across like magic. The voice of pain, experience, understanding, utter humility, no pretensions, no need for vocal acrobatics, no need to impress. Purity, simplicity, pure and simple.
I am a man, my wife will lie by my side. She actually loves me. Ditto the kids. The folks back home. My friends, cheerleaders all. Everybody wants me to pull through, be a winner, be happy. What good are you if all you can do is remind people of sadness? I want to go home and cook for the kids, even if I may not be able to eat some of it. I want to tend the garden, turn vacuuming and mopping the floors into some kind of exercise routine, make Helen believe I am pulling through, that we can travel again like old friends, find a smile people can believe in. I read Being There for the umpteenth time and Jerzy Kosinski’s Chance, that most reluctant of protagonists, the simpleton who spoke like the best of Steinbeck, looms as big as Christ the Redeemer gazing over the sea from the rocks of Corcovado, Brazil. It’s not a slow-drip.
Sadness is all about wishing for more. Disappointment springs from expectation. I could have been nothing. I could be dead. Instead, here I am, having survived a few hours of blood and gore, looking at a good chance of getting better, whatever form and however long that may take.
I go morbid on myself. I come face to face with nothing, I will myself to gaze into what it means to be a body that is cremated or buried, I think of all the people I have loved, how I saw them last in coffins. Mum, Dad, Errol, so many others, gone, forever, for no good. All so I can see myself anew, alive, blessed, protected, saved, loved, with promises to keep. The Cohen biography I’m Your Man reaches out to strengthen the idea that you must become nothing in order to make something of yourself. It could have gone the other way. But I have been saved. I have to stop feeling sorry for myself, stop looking in the mirror. This is not about me. I have to live, just not for myself. I have to celebrate. I must learn gratitude, find the joy in music and writing. Share. Giving is the gift.
*****
The days and nights are a daze. The operation has taken so much out of me that I sleep effortlessly, several times a day. The worst part of every day is the mid morning, after breakfast and a wash. Eating and washing up require so much effort that all I want to do is go back to bed. But my routine demands that I sit up, on a chair, for at least two hours in the morning and evening. I simply have to because that’s also how my body will heal. Lying down constantly is just bad.
If I am not exhausted, I am lethargic. Both are partly fuelled by morphine. I am hooked to a machine that barely whispers but is loud enough to make me think the bloody thing sounds like it has the cheapest synthesiser keyboard within its workings. It emanates the worst hooophhhh-beep-isssshhhhh-beep repeat cycle known to man. It’s there on the borders of my sleep. It is at the same time intolerable and beautiful, because this is the machine that intermittently feeds me a dose of morphine. A push-button mechanism is tied to my wrist. At the gentle touch of a finger, I self-administer a dose that is pre-set by my treatment team, whenever I think I need it. The machine only allows one dose every 15 minutes. I never miss a shot. It is the most precious thing. It helps me to sleep, which is what you need most of all to heal.
If you’re ever in the sort of position I was in, don’t let your prejudice reject the morphine. It works fast, keeps the pain away and helps you to sleep throughout the day. Sleep is the best thing for healing. You need it. Embrace the drug.
When I am told, one night, that I am to be taken off the morphine the next day, I have such anxiety issues I could cry. Nurses can be brutal when they break news like that to you, no matter how sweetly they may smile. As it turns out, I go painlessly from morphine to a painkiller-relaxant on drip, to off-the-shelf tablets, to nothing. After all that on the operating table, in less than 10 days, there is only the occasional dull ache, a sharp pull if I twist around too quickly.
These trifles aside, I can swing my legs off the bed, my toes can find and grip my slippers, I am doing well after days of practice, pulling the tower of medicine along when I go to the bathroom. Everything becomes an art — where to place it when I sit so my arms are free to do all the necessaries and maybes, the angle it should stand at when I shower, which side of the chair it should be when I sit to read, or chat, or watch another film on Sara’s old laptop. Each patient gets to choose two newspapers. I nominate The Sydney Morning Herald and The Australian. I have something to read when I am forced to sit. I fall asleep so often, as I am sitting up. I can fall asleep after two short stories.
Nearly three years later, good sleep is often hard to come by. I go to Kuldeep for help and he prescribes over-the-counter melatonin. “Sleep is very very important for all of us, William. It’s vital for you. This is how our body recovers from everything we go through every day. You have been through something that very few of us go through. We must tackle this sleep issue.” Melatonin becomes a good stand-in for morphine.
*****
Mornings in the post-op ward are a cycle of visits from the diabetes doctor, Prof Samra’s assistant, Nigel, nurses with insulin jabs, nurses checking the bag of the liquid diet I am fed through the tubes in my stomach, taking blood samples, draining the bags of abdominal fluids into measuring beakers.
I look forward to Nigel most of all. Nigel will most closely monitor all my numbers, and he will be one of those who will hold the keys to my freedom, going home. Nigel often stays to chat, and I sometimes keep the conversation going simply to hear the Scot’s accent. He is always kind enough to make the extra two minutes. When I ask about my condition, pace of recovery, I know that he can tell I don’t want kids’ gloves, that I also want a bit more human interaction, rather than doctor-patient formalities, and he takes the time to give me all the details, going gentle on the hard facts. He stays to chat, be a friendly presence.
Nigel is one of those who are concerned with the patient, not just the disease. It’s something that, in my experience, you don’t often find in the professionals around you, who, of course, have tens of others on their daily routine to also look after, in varying stages of recovery. Smiles are not stick-ons, and these lads and lasses, in both the public and private sectors, are run off their feet as it is, just coping. I know that and it’s a valuable reminder when I feel a bit of impatience, neediness, rise in me. Take a step back, Joe, join the queue, they’re doing their best. Nigel’s regular visits are all the more medicinal because of this. Also cannot buy lah.
Visitors are sometimes tiring, because sleepiness is almost constant. After a few days, I realise that the more I sleep off in the day, the harder it is to find deep sleep at night. So I try to sit up straight in bed, walk the ward more often to stay alert, keep the visitors longer. Everybody makes the effort to talk of anything but the operation, what the doctors say, when I may be discharged and I am grateful to talk about everything but patient-hood.
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“The Baddies”: The guys I used to play badminton with in 2016/17. From left are Arun, Arvind, Manoj and Pradeep. |
Arun Chandran visits regularly and calls most often. When I tell him about the “white noise” from the morphine machine by my bed, he brings three types of ear-plugs. None work, either because my earholes are too big or they don’t feel comfortable. One Saturday afternoon, I am surrounded by six people. Among them are Arun, his mate Abadan, Bersih Sydney secretary Jason Goh, Kuldeep and another LSS classmate, Raymond Ng, who runs an optometrist’s in Hornsby. (In the months to come, the dates for my consultations with Kuldeep, who becomes my go-to GP, invariably include an indulgent lunch for Helen and I with Raymond and Kuldeep. Raymond never lets anyone pay.) Also visiting that afternoon in Royal North Shore is Leslie, who has taken time off from work in his KL home to visit the recovering cousin. Back in Malaysia, it is feverishly building up to the 13th general election and everybody in my room wants to hear from Leslie all the gossip that can’t be printed. Les is the KL-based regional correspondent for Singapore’s Straits Times, and everybody is pleased to hear from an “authoritative” source happy to share a bit of informed analysis and forecasting.
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| My good buddy, Par-Tun. |
Par-Tun, my Burmese buddy, comes one afternoon and gives me my first ever foot massage. He just sits there at the foot of the bed, chatting away and kneading my feet in those big hands of his. Par’s wife, Jeab, and their two kids, Zarni and Narin, have also come and this family is all about smiles and helping and telling me, in their own quiet way, that I will be OK. The foot massage is like heaven.
*****
A couple of times in the late evening I wake up from a nap to see Andrew Foong standing quietly a few feet from my bed. He is a doctor, and was Global Bersih’s first secretary, when we all worked together to set it up.
The first time we meet one another is at a 2012 Bersih rally I have organised in Sydney. Making for two hours of time-zone difference, it is held as close as possible to when the huge street gathering in KL takes wing. We will learn later of a government that is so desperate to hold on to power with a rigged election that it will call on the troops to fire tear-gas and rain chemical-laced liquid on the crowd. The liquid spray is formulated to hurt your eyes to the point of temporary blindness and “burn” the skin with a very strong irritant. They use water cannon. Government troops fire gas canisters into the fleeing crowd, including when Malaysians seek refuge in Tung Shin Public Hospital, just off Jalan Pudu. The protest calling for free and fair elections, an end to the malapportionment and gerrymandering, is entirely peaceful and everybody is kept in check by Bersih-approved teams, members of which wear uniforms so they are easily spotted. All the violence is visited by the government of Najib Abdul Razak. The Malaysian street protest makes world headlines the next day, partly because Global Bersih has organised for rallies to be held in leading cities around the world.
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| With Lim Kit Siang in Sydney after the GE14 win by Pakatan Harapan - From left are Syahredzan Johan, Global Bersih founding secretary Andrew Foong, LKS and I. |
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| With Global Bersih founding treasurer Praveen Nagappan; Sydney 2019. |
Fast-forward six years to my post-op room, Andrew’s professional standards demand that he keeps a safe distance. When I tell him to come closer or sit by the bed, he says, “No, it’s OK, William. We must protect you from infection. And I don’t know what I may be carrying.” I see the seriousness in his face and it comes back to me. I have just been through some really serious business, and it’s far from over.
*****
Samra visits nightly, between eight and ten. After his first call, I can tell he’s coming by the sound of his heels on the corridor. Everyone else wears runners or sneakers. Samra is always suit-and-tie, polished leather shoes. Maybe four days after my surgery, Samra’s presence wakes me from my drugged slumber.
The biopsy results are in. His smile could have said it all, and he reads from his clipboard like it’s the 8pm news bulletin, but with good news. The tumour has shrunk to 15mm, from 35mm, and a big portion has been inflamed tissue. The malignancy has not spread to the lymph nodes, nor to the nerve ends; all factors considered, the disease is identified at Stage 1A. Despite the fact that the biopsy is on tissue extracted during surgery, and therefore “post-chemo”, the numbers are very good. Samra puts his clipboard on the shelf that runs the length of one wall. “Bill, it doesn’t get better than this. These are marvellous numbers.”
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| In the highlands of Thailand, post-op 2019. |
The chemo has worked very well, despite being two doses fewer than planned because of the episodes of fever. He says I will probably do very well with two more cycles, which will only follow after full recovery from surgery — expected to take at least two months. I ask Samra if the next two rounds of chemo are absolutely necessary, and he says my oncology team will advise. I am convinced the surgeon is avoiding saying, “Yes, you must undergo it” because he can tell I am dreading more chemo, and the risk of all those hospitalisations again.
It comes to me then that the port-a-cath has been removed. “What method will they now use for chemo, because my port-a-cath has been removed?” I ask. I hear about this thing that sounds like “pick-line”. Samra says it’s a chemo-delivery tube that will be inserted into my arm. “You’ll find it poses no risk at all.” Later, I learn he refers to a PICC line, a peripherally inserted central catheter line. Basically, it’s a tube that goes into one of the larger veins above the elbow joint. It is capped or sealed with what is known as a bung, into which chemo may be injected. The chemo flows through the tube, into the vein and on to the heart.
I say to Samra, as clearly as I can in my drugged out state: “Prof, I know you’ve heard it before. But I need to say it. Thank you for saving my life.” And there it is again, in Samra’s reply: “Don’t thank me, Bill. Thank God. This is all part of his plan. I’m just doing his work.”
Then he adds: “And thank you, too. You’ve just improved on my numbers, Mr de Cruz.” It’s the first time I see a bit of cheek in the surgeon.
*****
Of course I put out an APB, for Helen and the kids, a couple of Sydney friends, Angammah. Thumbs up, hands in prayer, clapping hands, smileys, they all follow. Within one minute, Lucille, my God-sister in KL, phones in. “You mean it was just a mosquito bite, ah?!”
The best phone call of all is the one I make to Helen, and it is Sara who picks up her phone — it must be the new protocol in Oatley because of me. “Mum’s in the shower, Dad.” I tell her the good news. The joy in my daughter’s voice chokes me up. I choke up now as I write this. “I’ll get Mum to call you as soon as she can lah.”
Of course, Helen calls back immediately. She is over the moon. Samra has basically told us that we have arrived at this place that we might reasonably refer to as the last mile. “Now you can have a really good sleep, bee. Pour yourself a nice moscato, and watch a nice movie with your daughter. Love you.”
I bluetooth my phone to the Google Home. I am so happy, I want to find something new and special to listen to, a bit more robust than the quiet, conventionally post-op stuff I have been playing. On Spotify, I stumble on Everybody Knows, a new collection of duets by Judy Collins and Stephen Stills. (Both are old-time favourites. The timeless Suite: Judy Blue Eyes was written by Stills when the two were lovers. I have a high regard for Stills’ compositions, his solo work and band outings, chief among these being Buffalo Springfield. I grew up listening to Collins, whose ethereal voice introduced me to Leonard Cohen’s Suzanne and Joni Mitchell’s Both Sides Now, both of which sit comfortably among several top-notch covers she has delivered.) My Spotify discovery is perfect. I play it louder than usual. It doesn’t take long for the night nurse to come calling, to say my neighbour can’t sleep. I’m pretty sure I grinned at the audacity of it all. Here I am, a few days after major surgery, diabetic, consuming for nutrition what I’ve come to call my astronaut food in a bag, recovering in a special-care ward, and I’m playing rock music loud enough to disturb my hospital neighbours.
The happiness is actually draining. I know I will fall into the most wonderful sleep. It settles in my mind that I could not ask for more. I simply could not imagine anything else I could hope for, pray for. When I pray that night, I can only offer my thanks in a hundred ways. I also say the Lord’s Prayer. I know by the time I get to my second Hail Mary, the peace of praying will lull me to sleep. It’s a discovery of mine, that a quiet prayer, in my condition, is the best sleeping pill in the world. And I don’t feel guilty when I wake up and realise I have not finished my night prayers. This is it. I cannot ask for more. This man continues to propose. But God is not done with me yet.
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