Chapter 10: From Here to Jupiter

TO MAKE the intravenous programme more effective, a “port-a-cath” is inserted in the flesh of my upper chest. It is a portable catheter. Part of it is a little pod, which is placed under the skin near the right armpit. The other part of the device is a catheter, which attaches to the pod and feeds into the superior vena cava, a large vein above the heart. Chemo delivered by syringe into the pod is channeled to the superior vena cava via the catheter, and the heart pumps it throughout your body via the bloodstream.

The port-a-cath is the preferred mode of chemo-delivery because certain types of chemo can be particularly corrosive to veins. The further away your vein is from the heart, the smaller and more delicate it is and, therefore, the more prone to corrosion by chemo. The veins near the wrist and elbow, into which catheters are traditionally inserted, are not as strong as the superior vena cava. Therefore, a port-a-cath offers the least possible vein damage because it allows chemo to be sent directly to the strongest vein in the body, the superior vena cava, through a catheter. Whatever damage chemo may also inflict on your body, a port-a-cath reduces the risk of vein-damage to almost nothing.

I undergo day-surgery for the insertion procedure at RNS and am in and out of hospital within four hours. All I have to show is a little lump about the size of a longan, just inside my right shoulder, about two inches from the armpit. A cross marks the spot, and soluble thread holds the incision closed. It itches for a few days, and I have to keep it dry when I shower, until the thread dissolves. I use water-resistant plaster. I add cling-wrap held in place by sticky paper-tape when I bathe. A couple of days on, the colour of skin around the pod lightens — when I look closely, I see that I have lost a fair bit of hair to the sticky tape.

  Making music and hiding symptoms in KL. 

I imagine chemo looks like the substance in the exoskeleton of the android killing machine in James Cameron’s 1984 film, Terminator. You see it when the android is blown to smithereens, and the bits look like blobs of liquid, like mercury. Beautiful, dangerous, potent, deadly, all at once. Actually, chemo is like coloured water and its odour is a mix of the fragrance of soap and a rather unappetising type of bread. Nevertheless, the cocktail I will absorb into my bloodstream is new and very strong, the therapy intensive. At the time of my treatment, data on its efficacy and potency is still being collated and shared by cancer treatment centres around the world.

I have chosen to listen to the science, Samra, Clarke, Kuldeep and, more than anybody else, Helen, who wants me to believe that chemo is my best shot. I have had to hand over that judgment call to my wife. This is also how I shall take care of her. She is my carer and I shall take care of her. Do everything she asks you to do. Eat everything she puts in front of you. Diarrhoea? Live with it. Small price to pay. Metallic taste? Never mind. Eat. Ginny had found it very very difficult to cope with her chemotherapy. Peggy cancelled after one session. I need nutrition, nourishment, strength, to withstand the onslaught of chemo and prepare for surgery. The bottom line, the plea of my wife is, Please, please, don’t give me a repeat of watching a really sick loved one reject the one medicine that offers real help.

And so, I embrace my chemotherapy. It’s the only way to go. I fall into it without having to weigh it in my mind, dismissing conventional fears, what it also does to the body, other than kill cancer cells. The rationale is like A, B, C. I am very, very sick with an illness that can kill me. I am a layman. I am advised by highly regarded professionals and I believe I know what they’re talking about. Above all, I know I must do this for Helen. If the cancer kills me anyway, it kills me. But it will kill me only after I have given it my best shot. It’s what my wife and children want me to do. I will fight this most unwelcome of visitors with everything I have, kick this bloody thing “from here to Jupiter” as I tell my cousins, my cheering team in Malaysia, New Zealand and England, relatives in Canada and Sweden.

This is the thing about telling people what you are going to do, isn’t it? It’s a good idea to go public with certain commitments. You have to stick to it, if you don’t want to feel like a vacillating fool. It’s like this book. I told everyone who matters that I was going to write it. Now I have to. I told everyone I'll be OK, so I have to do my darndest to be OK. Or die trying. They will, at least, come to know that about me.

Sentul teenager

I reject the notion that doctors and oncologists are slaves of Big Pharma — you’ll be surprised just how often well-meaning friends will send you messages warning you about the dangers of chemotherapy, once they know you have cancer and are embarking on that treatment. One guy telephones me, ostensibly to empathise and offer support. “Bill, chemo will kill you. You know that, don’t you?” he says. “Look I know it. I have read all the literature. Bill, I personally know a sinseh. He’s very, very expensive and it’s hard to become one of his patients because he’s in such demand. The waiting list is as long as my arm. But I can get you signed up and I will pay for the treatment, Bill.” Yes, that’s as well-meaning as you can get. Still, I have to find the energy and spirit to reject his offer as nicely as possible, while I fight back the anger (and bile that now freely rises because of the stent), astounded that friends can behave like this, that they can be so unthinking. People share the conspiracy theories behind pharmaceutical giants like you would pass around chocolate chip cookies. I get videos of Indian “doctors” who say, “Nobody needs to get cancer” and all you have to do is drink lots of fresh lemon juice and 10 glasses of water a day. I can just hear some of them: “Poor Willie. He didn’t need to get cancer lah. He just had to drink lots of water and lemon juice.” I’ve been told to get rid of my gold jewellery because cancer cells are attracted to gold. There’s actually a video on this. What I assume is meant to be a cancer-cell cluster looks like a gooey blob of baking floor, on one side of the table. On the other is what looks like gold jewellery. And you see the glob slowly slither towards the shiny stuff. I actually watched that video. These friends actually believe they are helping you. I block them as contacts on my phone. What a wonderful device the smartphone can be. Touch a little button on your screen and silence the madding crowd.

*****

I’m strangely ambivalent as I drive for more than an hour into St Leonards for my first intravenous chemotherapy session. The Northern Cancer Institute is along Pacific Highway, in an area called St Leonards. Further up the road, to the right, is RNS, where I will go under the knife for Whipple’s Procedure. I arrive at the institute about 2pm. A young nurse of Chinese background is assigned to me. It’s less than two weeks since diagnosis.

After the paperwork and a short wait, chemotherapy begins about 3pm. There are three rows of thickly padded, leather-upholstered recliner chairs with leg rests. Smaller arm chairs line the walls, presumably for those accompanying the patients. Just beyond the room is another section for treatment, similarly furnished.

Chemo blasts you with all manner of laboratory-produced medication that kills the cancer cells. Trouble is, it also leaves a trail of destruction in your body, attacking your white blood cells, which fight invading bacteria, viruses and other foreign agents that enter your body. Chemo can devastate your natural immunity. Your organs take a beating. I wonder again about the choice we have taken, opting for chemo. I immediately dismiss the thought. I need to believe it’s good for me.

The nurse who administers the chemo tells me the flesh around the port-a-cath looks unusually tender. “You poor thing. Tell me if it hurts, darling,” she says. In Sydney, women and young ladies — at sales counters, reception desks, on the other side of the bar in a pub you’ve never visited — will often refer to a male they do not know as “darling” or “sweetheart”. A migrant like me gets used to it after 30 years. The nurse sticks the needle into the port-a-cath. Within a few seconds, I feel a strange warmth, not quite comforting, spread throughout my body. After about a half-hour, my head feels a bit heavy, I get sleepy and drift in and out of sleep. The headphones play Ravi Shankar on Spotify. Evening ragas.

  At home after the first chemo dose.

Less that two hours later, with the clinic bit over, I have takeaway. One is in the form of chemo tablets. The other is a device that houses a bag of chemo, to be delivered in slow-release. It’s attached to the port-a-cath. It’s small enough to put into a pouch. Later I will strap it around my waist. I call the device my Keemo Kutti (kutti being Malayalam for cute baby). I will wear Keemo Kutti round-the-clock for three weeks, during which time I will also consume those tablets.

Each chemo cycle is four weeks. During each cycle, I undergo intravenous therapy at the clinic, once a week for three weeks. Each time, I come home with Keemo Kutti and a new set of tablets. The fourth week is my furlough, for the body to recover before the next cycle. Those seven days are like gold. The plan is to undergo up to six cycles before surgery, which is scheduled for early May. In the last month before the operation, Helen and I are booked for our Sri Lanka holiday, no tablets, no Keemo Kutti. Post-op, and after I am sufficiently strong to undergo more chemo, another six cycles will follow. At the time, of course, I don't even know if there will be a post-op. It’s a strange and dark place to be, but I have to get used to it, put it aside for the greater good. Sometimes, life leaves no choices.

Keemo Kutti hangs on a hook in the shower when I wash, and beeps all the time, every three seconds, to tell me it’s working. I tuck it under my pillow when I sleep. The beeping is a pain, because my hearing is pretty sharp. The mini-compo in the bedroom is a Godsend. Though the nurses say the catheter is firmly secured, when I sleep, I am aware enough to turn gingerly. When either Helen or I want to hold the other, it’s a delicate operation. The full dose is prepared to be fully used up in about five days. One hour before it is completely depleted, an alarm goes off. That tells me I should prepare to troop off to the clinic to refuel and collect more tablets.

Keemo Kutti

In the clinic after my first session, and having heard and read about the nausea and vomiting that can follow a chemo session, I ask that same Chinese nurse at reception for a couple of the airsickness bags piled neatly on the reception counter. Her reply is another lesson in how to cope. “William,” she says, looking me in the eye. “How do you feel now? Do you feel nauseous? Like you must vomit?” My nod says, No. “Then, don’t think ‘nausea’,” she says. “If you think about it, you will get it. Don’t think about it.” She smiles. She is right, of course — the journey home is without incident. Later, the Indian who has so many Chinese friends in Sydney tells them about this lovely young girl from China. I refer to her as my Jade Empress.

As Helen drives us through the evening congestion, I hit a most unexpected symptom. My senses are heightened. Everything I see, feel and think registers at a higher, “deeper” level. It is at first disorienting, then it becomes very, very pleasant. This must be like magic mushrooms. I’m so “high” all the way home that I can’t stop giggling when I phone my friends to tell them about my first chemo session. The feeling lasts through the night. The next morning, it’s gone. You move on.

*****

After the second session, the long return trips across Sydney Harbour Bridge and attendant traffic congestion, the oncologist decides I should avoid the strain of the drive, and begin treatment under the supervision of Dr David Thomas at St George Public Hospital. Thomas and Clarke will liaise to plan and execute the treatment. It is a huge relief for both Helen and I, because St George is only a 15-minute drive. By the end of my second chemo run, the first at St George, I feel very assured I am still in the best of caring hands.

But it is disconcerting, how everybody at St George asks me, “So, why did you have to go to North Shore when we are so close by?” It sounds like a challenge. “Did you think we're not as good as North Shore then?” is how the question comes across. Defensively, I simply say: “Because the surgeon I've been referred to is based there.” I keep from everyone the fact that I was initially referred to a surgeon at St George, that I'm really glad I didn't stick to plan.

I do not lose my sense of taste or smell. I suffer no nausea, bouts of vomiting or headaches. I have short periods of both mild diarrhoea and constipation, and they come like clockwork during each cycle, one after the other. But food has a metallic edge to it and it takes away some of the joy that comes with eating. On the other hand, I have seen my two sisters-in-law, and I know not eating is not an option. The side effects they suffered were not mild, and they would eat only the smallest of portions, if at all, drink very little water. You could see them waste away. A healthy person feels sick if he or she does not eat. I have no intention of learning first-hand how magnified it would be under cancer and intensive chemotherapy. Thankfully, a strong appetite marks every single day and I happily feed the hunger.

  James Taylor performs Lonesome Road with the
  Tanglewood Festival Chorus.

There is always the sadness, buckets and buckets of it. The reality of chemotherapy is a much deeper downer than I had imagined. I can feel it invade. I fight and fight, keep saying, the glass is half-full, but the sadness is unrelenting. Trying to contain it, keep it private, saps so much energy. After the initial stage of sharing, and finding strength in sharing, I just want to retreat to my cave. There are some things I simply don’t do, that I just can’t bear. Music remains the balm, and the way I sometimes listen, get totally lost in it, has helped me greatly. But, some of my favourite tunes become No-Go Zones. One of these is Lonesome Road by James Taylor. Then, there’s Running Dry (Requiem for the Rockets) by Neil Young & Crazy Horse. They make me cry.

Strangely enough, the last album issued before Leonard Cohen died, You Want it Darker, is comforting. I can relate to it. He’s having conversations with God, with himself, conversations about dying. He knows he’s dying, he’s accepted it, and he’s writing and singing about it. The title track is especially calming, when he sings, “Hineni, Hineni, I’m ready, My Lord.” Then, there is The Goal... “I sit in my chair, I look at the street. The neighbour returns my smile of defeat.”

My friends give me space, and when they do visit, it’s always practical. They do all they can. Jeffrey Yap, and his wife, Wah Lee, visit most often, bringing organic fruit, vegetable, meat fillets, organic sausages and bacon. Fran Foo, a close friend and distant cousin — and former colleague at The Australian, where I worked as a sub-editor for 10 years — brings raw honey (“None of that pure honey crap for you, Will,” she says), more organic vegetables, preserved fruit from Indonesia, which she knows I love. She has checked the contents carefully to find brands with the smallest portions of preservative. Fran tells Helen she’s on call. I can see the two of them begin to strike a close friendship.

The home of Queenie Khoo and Lim Sun, a short drive from Royal North Shore as well as Samra’s clinic, is the best respite to wait out consultations, tests, procedures. Over a few nights, Queenie opens her home to Helen, for my wife to stay the night. This allows Helen to arrive early at RNS, to catch the doctors, without having to drive at least an hour across Sydney Harbour Bridge. Queenie’s a great cook and she can whip up in a jiffy a wonderful mee-hoon soup, just the thing for an Indian who grew up in Sentul, so close to Jalan Ipoh in KL, where you can get all the hokkien mee, laksa, chap fan and kon-loh mee you want. The wet market near our Sentul home was a festival of Chinese hawkers when I was growing up. When I was studying in Form Six, Aunty Floby would go to the market early mornings every school day, when it was still dark, to buy me a laksa for breakfast. I would wolf it down before catching the 7am mini-bus for class.

Stanley Selvaratnam and Errol, in Sentul.

Back in Sydney, Arun Chandran is a regular caller and visitor. Arun is Malayalee. I am introduced to him during Errol’s first and only visit to Sydney. These two guys go back to Arun’s time in Malaysia, when he was F&B manager in various hotels and Errol was a journalist who covered music, nightlife, travel and accommodation. Arun gives me all the room I need for the stream-of-consciousness runs I make as I cope. He makes the time for me, visiting over a few hours, so he can take me out for a meal, cruising in a Jaguar he lovingly maintains, bringing me home and chatting till he knows I need to nap. 

My very good friend from Burma, Par-Tun, is also there, “for anything, mate, just call”. Par-Tun is a super craftsman and tradesman, and if he wants to pick up a particular skill, he works till he masters it. He has painstakingly and single-handedly built a decent-sized, outdoor fish pond and a real smart-looking wooden deck that leads to my backyard.

Par-Tun spent years in the 90s campaigning and raising funds in the name of freedom for Nobel Peace Prize laureate Aung San Suu Kyi. When I first come to know Par, Suu Kyi is undergoing a period of detention that eventually lasts 14 years, under a military regime that bars her dying husband a visa that would allow him to return from Europe to Myanmar, to be with his wife in his last days. The junta at the time says Suu Kyi may leave to be with her husband. But the activist chooses not to depart, fearing she will be denied re-entry. Suu Kyi’s detention has come after her party wins 81 per cent of the vote in 1990. The junta does not recognise the outcome and declares the elections null and void.

As I write Part Two, in early February 2021, Myanmar has just suffered another military coup and Suu Kyi is once again under house arrest. I cannot imagine how someone like Par-Tun must feel. In my early days in Sydney, Par saved me from becoming totally depressed, hopelessly homesick. I helped him on a couple or occasions, bringing along my guitar and a handful of songs to help the freedom activists campaign.

I break the news of my illness to Mahir Ali, another friend at The Oz. He comes over to the house. I hug him before he sits. My body shakes as I resist the urge to cry. It's my first public exhibition of an otherwise hidden fear. Mahir is a big man. He puts one arm around the back of my shoulder and makes an “mmmmm” sound that's almost an “Ohhmm”, and it conveys to me, “I understand. This is really shitty. You’re entitled to feel like you do.” My two LSS classmates in Sydney, Kuldeep and Raymond, call every once in a while. They all tell me I’ll be fine. In my mind, I hear what they don’t say.

Stanley Selvaratnam calls me from KL. Errol, Stanley, a guy called Hilton Franciscus and I formed an acoustic, four-part harmony group when I was in my early 20s. We did stuff no one else would even try, like Helplessly Hoping and Teach Your Children (Crosby, Stills, Nash & Young), Donovan's Catch The Wind, even our own compositions. We worked hard at our harmonies, we sounded good, and it went down well whenever we performed. Now, Stanley tells me he knows of my condition. He has gone to mass the previous day and he has seen my name projected on the screen, along with other names, during Prayers for the Sick. He has called Alice, Errol’s wife, to find out what on earth is happening, and she tells him. Alice has made an offering in my name and has called on every member of her church parish to pray for me. People are praying for me everywhere, by themselves, or in prayer groups pulled together on Skype. I know my cousin Marina has done this.

In the first days of chemotherapy, Helen is visibly anxious and worried that I will have a bad reaction, the side-effects will be too much, I will not want to eat. I have my own medicine for her condition. I tell her, “I’ll eat whatever you put in front of me.” And I do. “I will be the best cancer patient I can be for you.” I work hard at keeping my word. She cooks everything I want, and everything I should eat to build my strength and prepare for surgery. There’s a Malaysian-English term for what Helen did for me: “Cannot buy lah”. It basically means something you simply cannot put a price on. I wouldn’t be able to find it even if I had the money to pay for it. In a short spell, I begin to hear Helen tell friends and family on the phone, “William is a very good patient.” I will tear up to those words, and each time I do, I cannot but feel lucky.

As the days pass, my ongoing resistance to nasty, lingering side effects comes through to present a little serving of hope. My family and friends are all behind me, full of support. Helen and the kids are reservoirs of encouragement and good cheer. People everywhere are praying for me. I feel the love and it cools the mind, warms the heart. First, “early discovery”, then, hardly any side effects to chemo, good appetite, the best surgeon around and a wife to die for. I am more than lucky. I am blessed. I am going to kick this from here to Jupiter.