THE PORT-A-CATH is supposed to have made chemo-delivery easy, painless, no complications with finding a suitable vein, a co-operative vein, a vein that wants to “come to the party”, as one nurse puts it. Some veins make it difficult, they are built to automatically jump away whenever a foreign object threatens. I have my mother’s veins — thin and delicate. So the port-a-cath is very welcome for my chemotherapy. But, in a very rare reaction for recipients, my body rejects the alien object.
I develop a blood infection that nearly takes my life even before cancer, or the surgery, may have its way with me. Most likely, it happens at the very beginning, when the port-a-cath is inserted, despite the best attempts to provide a sterile, bacteria-free environment in the surgery room at RNS.
The first time I feel like I have a temperature is the day of the second intravenous session at St Leonards. It is the day before Christmas Eve 2017 and they have squeezed in an appointment for me before they close for the extended holiday. I feel I’m burning up inside, and I am worried. I have never felt this bad. I report it to the nurse immediately after arrival. She takes my temperature three times, three different ways — the sensor to my forehead, the thermometer in my ear and the old-world approach, under the tongue. I am as certain as can be that I have a fever, I know it, my body feels it, but it just doesn’t show on those thermometers. I need a blanket, I am weak, almost trembling, but they cannot register any fever. “I think you’re just nervous,” the nurse says. “Just lie back, darling, and let us give you your chemo. We’ll take care of you, luv.” Which I do. The recliner seat is some comfort and I close my eyes, sleep, knowing I am already in a medical facility, that RNS is a few hundred metres away in case of emergency. The nightmare is that this is the side-effect that will floor me.
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| Me, at a Sydney benefit concert for Southeast Asian rights groups. |
The chemo session otherwise goes to plan. It’s 1pm by the time we get back in the car for the ride home. On the drive back, I feel even worse. As soon as we are home, we get the in-ear thermometer. It beeps twice to signal the reading is done. I take it out and it immediately registers a high fever. It’s above 38°. I am very afraid. This is higher than anything I have felt in years. I am also bewildered. How is it possible the cancer therapy clinic could not see this? I told them I was feeling very feverish. I was cold. I needed a blanket. I had all the classic signs and, yet, they could find no evidence of fever.
Strict protocol for a patient on chemotherapy dictates you take yourself to the emergency department of the nearest hospital if you develop a fever, which is a sign that your body is battling an infection. In my case, an unchecked fever could lead to organ failure. You do not go to your friendly family doctor. No over-the-counter fever medicine. You do not even go to a medical centre. You go to the emergency department of the nearest hospital.
We have not had time for lunch and my poor wife must be weak with an unfed hunger, especially after the long drive from St Leonards, but we drive to St George. We are worried sick that my body is rejecting the most promising type of chemo. What will this mean? No surgery? No chemo? A less powerful drug? After all that, Kuldeep's life-line out of the blue, one of the world's best surgeons and his oncologist partner, everything seems up in the air. It may all come to matter very little now. The fever burns, the fear is bone-chilling.
I front up at the emergency counter, flash my cancer-patient card and say, “I have cancer and now I think I have a fever.” The nurse immediately pulls out an in-ear thermometer, asks me if I know how to use it. I nod, yes, and she hands it over the counter and tells me to go through the motions. Beep-beep. Yes, it is a high temperature. Within minutes, I am lying on an emergency room bed. I am fed Paracetamol through a tube. They take a sample of blood. When the results come in, a female doctor says exactly what I don’t want to hear: “We’re admitting you, Mr de Cruz. The lab boys say there’s definitely an infection, but we can’t pin it down, so we’re just going to leave you on liquid Paracetamol for a bit.” Nothing will change her mind. I have cancer. I cannot be sent home. It is 23 December.
But she is empathetic. She tells me about her father, and how he lost his fight with cancer only weeks ago. “I know how you’re feeling but we have to admit you.” She is obviously aware Christmas is two days away, and I am likely to remain in hospital for a few days. “We can arrange for you to get a day-pass so you can spend some time with your family on Christmas day, if we can control the fever.” I've already decided. No, I won't go home, because it will be impossible to leave. Misery is like an ocean.
The next day, Christmas eve, is about checking to see where the infection is, which organ, while I receive Paracetemol intravenously. Once again, the pathology lab cannot pinpoint the source of the infection. There is no escaping it — I will be in hospital for Christmas. For another two days, I continue intravenous treatment for the fever. I am responding well to the Paracetamol, and it seems safe to put me on tablets for the next two days.
The final stage in treatment, two days with no meds, is the real test. If I get by with no fever, I pass Go, the bank gives me $200, I do not go directly to jail, I go home. There is no fever. I am discharged on 27 December.
The day after being discharged, on 28 December, I register a fever and have to be admitted again. Having already spent Christmas 2017 in St George Public, I will also spend New Year Day 2018 there. Helen and I watch the Brighton le Sands fireworks display from my ward, in the new wing of St George. Gathered with us are several other cancer patients, IV tubes and towers in tow, their families, friends, and the nurses, who do all they can to make us feel “at home”.
This second hospital tour, the infection again shows in the blood, but they still cannot determine the source. I am put on a broad-spectrum antibiotic. My medical team concludes it's not worth the risk I take whenever I travel to St Leonards for chemotherapy. Moving forward, I become a patient at St George Public Hospital, a few train stops from Oatley station, or 10 minutes from home by car. Prof Clarke will liaise with the resident oncologist at St George, Dr David Thomas. All treatment, how the chemo cocktail is put together, all the measurements, will be determined through consultation between Clarke and Thomas.
But that doesn't stop the fever, which comes suddenly, far too often. Between the start of chemo and the day of my surgery, I will be in hospital for Christmas, New Year, Chinese New Year, Valentine’s Day and then one more time, during an inauspicious period, at the oncology ward of St George.
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| Wigwam-design birthday cake. |
Every lay person makes the educated guess that the port-a-cath needs to be removed. The lump is bigger, a blue-black area covers more skin than on each visit before. Thing is, the port-a-cath has been inserted by a team from RNS, where Samra operates. My ongoing chemo and bouts of hospitalisation due to the infection are at St George. Naturally, the long, intangible sweep of bureaucracy determines St George should not remove what North Shore has inserted in my body. So, St George puts me through a process of elimination.
Each time I take myself to emergency with a fever, I am hospitalised for at least a week, and both the pathology process and treatment repeat. With each visit, they test the liver, stomach, kidney, gall bladder… they do everything but remove the port-a-cath. By the time of my fifth visit, Blind Freddie, as they say in Australia, could have seen that half of the right side of my chest was as black as the southern sky at night. But no one can see past due process in the public health system.
*****
In the meantime, every stay in hospital strikes one precious week off the chemo calendar, and the chemo is a vital part of giving me an extended lease on life after surgery. This is the double insurance policy I have signed up for. Helen and I are haunted by how the recurring infection is depriving me of the Samra-Clarke strategy that has given us so much hope for coming out on top — kill all the cancer cells you can and shrink the tumour as much as possible before surgery; operate to remove the tumour, or the entire pancreas; repeat the intensive chemo after surgery. If they discover the disease has returned six months after they cut me open, they cannot operate again. All in all, I lose six weeks of chemo treatment.
The fever always lasts for one day, before the Paracetamol kicks in. That leaves me as the most fit patient in the ward. By my hospital bed at each visit is the Bible that Mum gave me before I migrated, and her glass-bead rosary. I walk 20 ward-laps after each meal, and sometimes more often. The more friendly nurses cheer me on and give me the thumbs-up as I pass reception. I recite the Rosary with each walk. I read the Bible when I am not watching something on my laptop. You can’t mistake me for anything but Catholic.
I come to know the people nearby. I watch out for my room-mate. He’s in his late 60s, terminal and very often delirious. He simply doesn’t know what he is doing. They say he’s a war veteran, and I sometimes make out what he’s mumbling ... “They're firing. Keep your head down, Joe. They're firing, Joe.” One night, a creaking wakes me up. I can’t figure out where it’s coming from until I turn in my bed to look over at him. He’s used the controller that adjusts bed settings to lift himself about 10ft up from the ground. I jump out, pull my tower on wheels as far as it will go without having to unplug it and shout for the nurses.
Another time, a woman shares my room. She’s really pretty, her husband is very handsome, he’s totally devoted to her, they're so much in love, they’re Italian, and they look like a movie couple when they show me pictures of themselves from when they got married. The two of them are beautiful human specimens. She wears heels to go to the bathroom, and she can hardly walk straight. Of course she trips one night and crashes to the floor. I help her up and call for the nurses. She’s very very old-fashioned and embarrassed as anything because I have to lift her with my arms from the back. After they put her back to bed, I tell her, “Next time you need to go, just tell me and I will at least help you walk to the bathroom.” She's of course very grateful but too modest to even contemplate doing such a thing. Next day, her husband says, Thank you very much, and brings me a takeaway coffee. I quietly tell him to take away her heels and give her slippers.
The nurses and I become friends. They like me because I help the other patients and I don’t make small talk with them. One of them is Josie, and I tell her, That’s my Mum’s name at home. Josie sometimes keeps a seat for me when the nurses gather to watch the sun rise over the sea at Brighton le Sands. I’m usually the first patient to wake on the ward, and I’m mixing my Milo by 5.30 some mornings. They tell me about their working conditions, how the contract allows for only 10 hours between shifts. It’s just not enough time, obviously, but “the union doesn't say anything”. It doesn’t stop these women and men from making me feel like I’m in the best public healthcare system in the world. Good nurses — also cannot buy lah.
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| With my constant carer during one of the tours at St George Hospital, Kogarah. |
The nurses see how well Helen looks after me. She brings my lunch and dinner to St George. I feast on all my favourite foods. With each visit, the aroma from warming up in the microwave all the curries and Chinese dishes Helen cooks wafts through the ward. I count my blessings again, and the blessedness of my wife. I am so lucky to be in St George, a short drive from home for Helen. If I had been at Royal North Shore, the drive would have taken more than one hour, one-way.
I would have been admitted in Royal North Shore if a fever had registered during my chemotherapy in St Leonards. It just didn’t. But the fever made its presence known as soon as we came home that afternoon. The mystery lingers on. While I felt it in my body, why did the fever not register in St Leonards, on the other side of the Harbour Bridge? How come it registered immediately one hour later, in Oatley, on our side of that great Sydney divide?
As it often happens, when the mind ponders something for days, in search of an answer, it unravels slowly, seeping into the consciousness. I have been looking in the wrong places, searching for a rational answer in medicine, my physiology. The truth is wondrous. This is God’s design for me. This is how he protects Helen and I. The fever only registered at home, meaning I would be admitted in St George, the closest hospital at hand. And thereby, Helen is spared the daily commute and I will have the invaluable benefit of not having to eat hospital food. This is no coincidence, it is not luck or chance.
As I relate all this to Helen, she is speechless. Her lips move to find the words, her eyes dart, as she tries to fathom it all. There is no argument about it, but it is difficult for her to comprehend. She was there at St Leonards, she knew her husband was feeling feverish as all hell, and the fever refused to show on three separate occasions. She saw it when it immediately registered at home, two hours later.
The rational mind is often an infallible bullshit meter but, for me, there’s no question about it. I have had decades of faith and belief. Helen was baptised a Catholic at the turn of the 21st century, 10 years after we came to Sydney, on our wedding anniversary. I have been Catholic for life. I believe in the blood. Immaculate Conception. Virgin birth. Transubstantiation, the conversion of consecrated bread and wine into the body and blood of Jesus Christ, who died on the cross to save humankind. Catholics kneel before the crucifix and we make the sign of the cross. We hail the Virgin Mother Mary in our prayers. At Mass, we invoke, “Only say the Word, and I shall be healed.” For me, that line speaks to everything that is Catholic about me. I have not sat through a Mass in decades, and the white light of faith and belief flares again, it comes to me in my hospital bed. I clutch Mum’s rosary. I am on the verge of crying in an overwhelming gratitude, in a sublime sense of humility, as I look at my lovely wife and say, “This is the hand of God.”
Helen purses her lips, nods. She knows, understands, accepts. I can see the relief in my wife, that little smile that acknowledges the comfort of that spiritual embrace. I think she traverses the chasm between lapsed Methodist and Catholic in these few moments. I hope she sees me for what I am. This is why, the first thing I hang up on a wall in our new home, 20 years ago, is the wooden crucifix I bring with me when we migrate. It hangs from a nail just under a downlight and the shadow it casts is something to behold for the believer in me. This is why the sinner can make the sign of the cross with his thumb on the foreheads of his children and his wife. Again, the thought comes to me, unbidden: Everything that has come before has only served to lead you to this. This is the harvest of belief, this is beyond faith. I am being saved, and there is a purpose to this.
*****
It’s another bout of fever, I’m admitted again and go through the by-now established procedure. The day before I am to be discharged from hospital, they tell me I will receive my next pre-op dose of chemo the following day, and be sent home. The next day, I shall be again reminded of Uncle Joe’s words: Man proposes, God disposes.
*****
8 January 2018. I do the morning rituals, eat every bit they serve me for breakfast, all happy and looking forward to chemo and going home. The bouts in hospital and intensive chemo have taken a toll, but I have slept better than I have in days. I am ready for one hour of intravenous chemotherapy.
It hits suddenly, while I’m lying on my hospital bed. I begin to feel cold. Then I get the shakes. A raging temperature. I am shaking so badly I can feel the bed rattle. They strip me of everything but my boxer shorts, and cover me in the thinnest of cotton blankets. In Malaysia, if you feel cold and weak and feverish, you jump under a thick blanket and sweat it out. The Western approach would have them throw me in a bath-full of ice if they could.
It’s emergency stations at my bed. A nurse from intensive care attends to me, reading the numbers to determine if I should be taken to the ICU. It’s a young man who dedicates himself that day to finding out what’s wrong, fixing me. He works like a doctor, except he’s a nurse. My heart-rate and blood pressure are running off in opposite directions, to critical levels. I hear my room-mate whisper the numbers to his visiting family members, and it’s otherwise pin-drop silence on his side. My veins are collapsing on me, and they try a half-dozen butterfly needles. They can only treat me intravenously, but my veins are refusing to party. I drift in and out of consciousness. Everything is a blur. My specialist nurse is trying to save my life.
Some of these things register in real time. Other blanks are filled in as I talk to the doctors, and get the gory details from Helen. My wife can only tell me so much because she is not allowed into my room. The room-mate is curtained off. No more visitors are allowed. Finally, the young fighter by my bed strikes a user-friendly vein. After that, it takes about two hours. I don’t really know. Helen is in the background, I think. I can’t imagine now what she must have been seeing, how she would have felt, watching it all almost slip away.
*****
It’s past 9pm. Through the window of my hospital room, I can see it is pouring like a tropical storm. Long rolls of thunder follow vicious streaks of lightning. I am too tired to care under the comfort of two blankets and bed clothes. I am exhausted, but the lightning sometimes jolts me awake. It feels like I have lost another five kilos. I am in a restive sleep and sense a visitor in the room. Barely able to open my eyes, I see it is one of the oncologists in the team that visits me every day. He is in his early 30s, at most, of Middle East background. His work shift is over. He has his little backpack around his shoulders. I make a gesture with my hands that basically says, “Hi, it’s nice of you to check on me before you go home, but I really just want to sleep.”
He will not be deterred. He comes to stand by my bed and gently tugs down on the blanket so he can hold my hand. I say, “Thanks, doc, for everything you all did. It was pretty crazy.” He nods to the Bible and Mum's rosary. “Mr de Cruz,” he says, “you have to thank your God for saving your life today. If the fever had struck after chemo had begun, we would have killed you. We have decided we won’t give you any more chemo. Your God saved your life today.” I still like to think he’s Muslim.
I have bounced back from another near-miss, but the infection around my port-a-cath is now looking like a swollen ping-pong ball and the skin is as distended as it can get without breaking. During a shower, I stretch my right arm upward, and the skin tears, blood erupts. Blood has hit the shower wall. It looks like so much is pooling on the floor and I wonder how much of it is water from the shower above. I staunch the bleeding with Helen’s help, finish the shower and crawl back into bed, depressed like a black hole. The nurse comes over, dresses the wound and says, “That blood looks really bad. I don’t care what they say, I’m calling them and telling them they have to remove it.”
And it comes to pass that a young lady nurse actually telephones a doctor on my team to say, “Look I really think you should remove the port-a-cath from Mr de Cruz. It can’t be anything else that keeps bringing back the fever to him. Put the poor man out of his misery.” Apparently, no one questions the wisdom of my nurse. The next evening, they wheel me in to the theatre to surgically remove the port-a-cath. I wake up in the post-op recovery room thinking I am still waiting for surgery. I am back in bed in two hours, sleeping the sleep of a returned soldier.
The morning after, when the oncologists have checked me and signed off on my discharge, I ask one of them: “Hey, the next time I get a fever, can I just take a couple of Panadols?” He looks at me, really sorry for everything I have been put through, and nods.
Once or twice, I feel a fever rise. I use the thermometer, because sometimes it can be psychosomatic — you’re anxious you’ll contract a fever, it stresses you out, you’re constantly thinking about it, then you actually feel you’ve got it. It’s very rarely false-positive. I take the Panadol. I look at Helen, Sara, make sure they make eye-contact before I say, “I’m going up to pray. I’ll be fine when I come down. You wait and see.”
I go up to my room, lie down on the bed, hold Mum’s rosary, touch the beads, as if they are life-giving crystals. The silent prayer is desperate, and I often have to fight back the tears. I set the timer for 30 minutes. That’s enough time for the Panadol to work, or not. Each time I say the Lord's Prayer, the Hail Mary, I say it slowly, speaking clearly, each phrase infused with all the meaning and truth I can muster. I bring the rosary to my nose, see if I can detect Mum's scent. I wish I had not brushed it clean with toothpaste to bring back the shine. I want old, caked dust, the natural oils of the skin, dirt, whatever bits of Mum had been on the rosary. They would help me now. At least the scent of the toothpaste is gone.
And each time I pray, my prayer is answered. The fever is fought down to nothing. I pray to God and speak to myself. I am my own physician, my own healer, under God's guidance. I am instrument, servant, student. And each time I fight off the fever and realise I have staved off another 10-day stay at hospital, I am renewed, re-charged, the belief in what is happening is a calming presence in my body, mind and soul. I am looking at imminent surgery from which I may not return, but I am undisturbed. There is a pure magic that abounds. I can beat this. My spirit soars. There is only the surgery and perhaps three months of chemotherapy ahead. In six months, it will all be over. I think I am home free.
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