DIABETES is a sucker punch from the blind side. The food portions I am restricted to are like 5-star POW rations. The only silver lining is how it eases the strain on my digestive system. I am plagued by the notion I simply can’t build up my strength in preparation for the surgery to come, if I am to eat so little.
It permeates into my life in ways that my cancer has not. I have always liked a drink before dinner. Now, only the worst of wines is permissible. I find a very limited range with 5% alcohol, all of it sweet moscato. Low-alcohol, low-carb beer can be found on the shelves but I might as well give up and lose the belly. Single malt whiskey is a thing of the past, long, long ago in a galaxy far, far away. Well, I brought it on myself, didn't I? All that alcohol and cigarettes. And even with this dire warning, I'm still craving for it. Will I ever learn?
Dusk in Oatley.
Can you disgust yourself this much and still feel you deserve some comfort, understanding, someone to say, “It's alright”? Yes, you can. Yes, you can.
I no longer have the afternoon stupor of a full meal that lulls me into a nap. It frustrates me that I am forced to sleep only because I am tired from the chemotherapy. I remember an afternoon in KL, driving back with Helen to wherever it is we are staying a few years ago. We have had a good Malaysian lunch, it’s hot and humid. Helen hears me yawn and says, “Wanna nap ah? Me too.” I grin and nod. “Yup, this is the land of the afternoon sleep.” We both laugh and think it’s a clever turn of phrase. We must add it to others we have concocted, like “Drive like the Buddha”, which we will use for the t-shirt range we keep saying we will produce as we ease into retirement. Malaysians will get a kick out of it. But this memory is not a nostalgic yearning. It’s knowing there are things I will never re-live, and I have had no say in the matter. Life has taken a corner, and there is no turning back
My meals are regimented, by timing and portion. There can only be so many hours between eating times, because the blood-sugar level may drop too low if I wait too long (hypoglycaemia). I eat too much, too often, it shoots up and I get hyperglycaemia. I must have a snack before I sleep at night, otherwise I may wake up eight hours later dangerously hypoglycaemic.
Helen’s daily routine is anchored to all this. Around midnight, just as we are both sleepy from TV, she must go down and bring up a snack for me. She won't let me do it. Before I wake in the morning, she is downstairs preparing breakfast. And thinking about when she will have to begin lunch. Not once does she break. The lovely nature of the woman I fell in love with seems inviolable. I am sure she talks about this cruel blow to her girlfriends, Wah Lee, Fran, her sister Grace. I hope she does. Otherwise, she’ll just wither within herself. It makes me even more depressed knowing that her life has also turned around and it will never be like it was before. She doesn’t deserve this. A wife is not a servant. Women are not meant to be born into servitude. She has devoted and sacrificed so much of herself, to her children and husband and sisters, she might as well have been captive to her love. Now come the real chains.
On top of all that, as I wait out the five weeks and six days to my surgery, it comes to me that you never really beat cancer, despite all the sunshine and smiles the medical folk give you when they refer to that magic five-year line, after which, as they say, I am “free”. You are only ever in remission, and relapse is really a four-letter word. “Free” only refers to calling an end to the repeat-cycle of tests.
The bout with the diabetes I didn’t know I had, added to how often I am expelling bodily waste, so much of it, has seen me lose at least 22 kg. I have dropped to 52 kg, from a consistent average of 74 kg, in the space of weeks. Helen says there is not much flesh at all in my buttocks, that the sight is the one thing that drives home to her just how much weight I have lost. When I sit on the toilet, it hurts because there is only skin and bone. Without a belt, my pants just fall off me. I’ve always liked my shirts oversized, but now they are way too big, they billow around me as I walk, not that I go anywhere much. There is no mistaking the stick-and-bones no matter what I wear. It’s another huge worry because sudden weight loss can be very dangerous.
When I report to Samra, he prescribes Creon capsules. In the field of pancreatic cancer, Creon stands alone — there is nothing like it on the market. It supports a basic function of the pancreas, the absorption of nutrition from the food we eat. Samra says it’s made with the pancreatic enzymes of pigs. The pig, apparently, is a medical godsend to humankind. Its heart is very much like ours in make-up. Cardiology students use the animal’s heart in training. Pig corneas are also very much like ours, and they can be used in transplants. When I hear of Creon and its pig-enzyme make-up, the Malaysian in me, so wary of Islamic encroachment, leads me to ask Samra: “So, what do the Muslims do when they have pancreatic cancer?” He’s obviously been asked before. “They have special dispensation from their priests. They are allowed to take it because it will save their lives.” Not taking it would be committing a sin.
He says the weight loss has come because my pancreas is drawing less and less nutrition from whatever I ingest. Almost from Day One of Creon, I stop losing weight, and very, very slowly, I begin to gain, in the tiniest increments. Once again, Helen and I realise this could very quickly have gotten much worse.
I love my food. I am always the last to leave the dining table. As Malaysian as ever, in the company of family and friends, meals are special occasions, meant to be savoured. Good food is up there with good music. All these joys that are at the heart of living and happiness are turned upside down.
My diabetic condition serves up failing eyesight, an ever-present sense of fatigue. Good food does not interest me as much because I can no longer eat until I am sated. None of this is mentioned by the diabetes nurse, or the endocrinologist. This is left to the patient and carer to discover, either from the unfolding of this new life, or yet another information brochure they give you, along with the growing list of medication. I have to give up, or learn to curtail and deny, so many aspects of life, living.
It is a bitter, depressing winter of the soul. The twists and turns and crash landings of the last few months are enough to send me to bed at all times of the day. I do not sleep. Bed and the eye-mask are escape mechanisms. Ultimately, in the cold light of this condition, the mask fails. The mind does not need daylight to wander. Darkness leaves too much room for the mind to roam and everywhere I go is a place I don't want to arrive at.
People tell me I am handling it all so well, I am an inspiration. I am setting the bar for everyone else, showing by example that it can be done — you can pick up from even a paucity of pieces and move on. But I don’t want to handle it. No more. There are days I can believe I would embrace that distant peace in death, and it would be OK. I’ve done my bit. If I go to sleep and never wake, it’s OK. Helen and the kids will rebuild. It will be painful but they will renew themselves. I have not broken into a whimpering, pitiful heap. I will have departed in honour. Helen will have her life back. I wonder if she would ever remarry, what Sara might say.
And again, always this thing, lingering in the system, a battery that recharges all by itself, and it lights up a deep, deep well of hope. It breaks through the funk. I realise, yes, I am lucky. I am alive. I could be dead. Ever so slowly, the thought that I have survived, again, a near fatal assault, keeps pointing me to the belief that there is purpose behind it all. This new person that I am manages to find white light in the deepest, darkest, subterranean caves. The saving grace of a comforting embrace. I am a man, a husband and father, a nephew, a cousin, friend; we are the sum of our connections to others. I cannot let the side down. I have to pull through. Even if it's just for Helen, this person that I will eventually become must be worth all that effort and love she just keeps pouring into the well.
*****
Jeffrey and Simon Lim visit me near the middle of March, about a week before surgery, to take me out to lunch. Jeff is a migrant from Singapore, Simon is from Penang, an island in Malaysia’s northeast. It’s about noon, more than four hours after breakfast. It’s a pleasant day, I am happy to be among the guys, it gives me a chance to just shoot the wind, take my mind off all this. We decide to walk to a waterfront cafe in Como. I have made this 30-minute walk before. Halfway through, I begin to feel weak. The walk is more exhausting than I have expected, I must be hypo. I tell the guys. I can see they are in a predicament they know nothing about, and I have put them there. All I can say is, don’t panic. We’re closer to the cafe than home. I get weaker and weaker and when we finally reach the place and find a table, being able to sit is an immense relief. We order and I realise waiting another 15 minutes for our food to be cooked is far too long for my condition. I go up to the counter and, as friendly as possible, tell the waitress I have diabetes and I must eat something asap. She doesn’t bat an eyelid, heads straight for the kitchen and comes back to say, “One portion of chips coming up in two minutes, sir.” I could kiss her. I grab a Coca-Cola from the fridge and almost scull it.
By the time I give myself the insulin injection — which can only be administered just before the first mouthful — and get halfway through a really good burger, I am sufficiently recovered to explain it all to Jeff and Simon.
The near miss at Como helps Helen and I understand better what the science of coping with D-T1 also comes down to: I simply have to keep snacks at the ready, for the times the next meal may be delayed by about an hour. Anywhere I go, from now on, I carry my backpack, for the meds, as well as a breakfast bar and a soft drink. If anything gives me a hyper reading, I upwardly adjust my insulin dose. D-T1 does not mean I cannot enjoy my food. I can still partake of all my favourite dishes, I just have to space my meals, and not allow excess. When I indulge, just adjust the insulin.
Most of us eat more than we need. The body finds the sugar it needs in many things other than the little brown granules that make such a difference to a mug of hot coffee. I can have rice every day if I want, just less of it. And it doesn’t take long to go on the wagon where alcohol is concerned.
The more I learn to cope, the more the glass looks half-full. If I do this right, I might live to a grand old age, be able to cradle my grandchildren, bring that smile to Helen’s face that you just cannot buy lah. I can be happy. I see that it’s only when my thoughts are restricted to me that the life ahead may not seem worth fighting for, because of D-T1 and the indefinite nature of remission. On that level, I would give up. On the other hand, if I viewed it through the lives of my children and my wife, the grandchildren to come, I see the reason to fight all over again. Ten years from now, if I can be a positive presence as our children begin to raise their own families, I’m doing pretty well.
The power of reason sustains me: It could be worse. Much worse. I am alive and I have a fighting chance. Care less for myself. Do it for them. Give them a life survived and lived well. Giving is the gift. Giving enriches you. Just give.
Helen has heard from a friend about a pancreatic surgery procedure called the NanoKnife, laser-based. At one of our consultations with Samra, we ask if it’s an option. It immediately sounds like a stupid question: Why would a top-of-the-line surgeon perform an excavation like this if it may be easily avoided?
And it’s explained to us. The NanoKnife does not apply in my case. It is used on patients whose pancreatic conditions cancel out normal surgery as an intervention. The NanoKnife uses electric probes targeted at cancer cells in the tumour, removing as much of them as possible. It is considered a life-prolonging strategy, rather than curative. I should be grateful I’m not a candidate for the NanoKnife. So, it’s back to Plan A. There is only Plan A.
As my date with the scalpel draws nearer, I read anything I can get my hands on. John le Carré gets endless re-runs and his novels are the perfect escapes. Smiley never feels sorry for himself. The story of Jesus, his last miracle, the raising of Lazarus, then riding into town on a donkey, from Palm Sunday to Ash Wednesday and Good Friday, is riveting, shocking for the truth of what people may do to someone who, basically, challenges the orthodoxy of social order, preaches that we should care for one another, do good.
The last mile is like my own Holy Week. There is a sense of fatalism, an almost passive acceptance of what lies ahead, with no place for pessimism or fear. If “it” happens, it happens. I will go in for the surgery and I will leave myself in the hands of God, a final surrender. Again, it is a quiet peace. I spend as much time with the kids as I can, in the evenings, when they return from their jobs. I am always downstairs when they return.
*****
Helen and I go for a concert by Cat Stevens-Yusuf Islam — this is how he is billed in the advertising. It is a blissful experience, less than two weeks before I go under the knife. Stevens is still a master of the acoustic guitar, his voice has hardly dimmed over the years; if anything, it is stronger, fuller, more sure. At the show, he recalls an experience that changes his life. He is young, a star, still recovering from a tuberculosis condition that nearly takes his life. He decides he needs to stay healthy, build up his lungs. A keen swimmer, he finds a spot on a beach somewhere from which to take off. He reckons he can make the outcrop of land in the distance. Man proposes, right? He is long past the halfway point when he realises he cannot go on. He thinks there and then he is about to die. He floats on his back, looks up at the sky and asks to be saved. Just like that, the most gentle waves begin to form and he is eventually buoyed back to safety.
*****
Jeffrey calls, speaks to Helen, who passes the phone to me. “Bro, I’ll come to see you in the hospital when you go in.” Of course. Jeffrey is very kind and thoughtful. He’s had a similar scare and has been in remission for more than a year now. You just wouldn’t know it, looking at him, talking with him, because he’s very much c’est la vie about it, and it’s a lesson I hold close to myself. He often says, “Bro, Que Será, Será”, and that’s how he operates. Helen tells me she also wants Fran to come along. I am happy that they will be there. I hope I don’t break down and cry, just in case it’s the last act. I so desperately want to be strong, to be the one who makes the sign of the cross on their foreheads, Helen, Ben and Sara, as I tell them, “It’ll be OK. I’ll be OK. I’ll see you in a few hours. Tell David.”
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| Jeffrey Yap: "I'll come to see you." |
The night before is a bit quiet. I have sent all the messages I should to all the people who need to hear me say everything but goodbye. “I’m in God’s hands” is the sign-off. Upstairs in our bedroom, TV doesn’t seem like quite the thing to do. I think music might make me emotional. All it will take is one lyric. I just don’t trust myself. So it’s lights out as we lay back. All I can do is assure Helen that I am as composed as I can be, and confident that Samra will call her when it’s all done and dusted to say I’m OK. “It’s in the hands of God,” I tell Helen. “We must believe. Belief will give us hope.”
*****
There we are on the morning of 23 March 2018, Royal North Shore Hospital, Pre-Surgery Admissions. They whisk me away for the routine tests and checks, within a minute of my fronting up. There’s a questionnaire and the nurse needs to tick the boxes. Finally, I sign the consent form, list Helen as the next of kin, double-check her phone number. I change into a hospital gown, and I’m set free to see the family again, for a few minutes, before the final prep.
It’s good that Jeffrey and Fran are there. Their presence helps me to believe this is all somehow normal, run of the mill, everyday stuff. Jeff actually says, “Bro, I’ll see you later.” I tell him, “I’ll hold you to it.” When I kiss my wife, Ben and Sara goodbye, the truth is, none of us knows if I will live through the next 10 hours or so. But it doesn’t show. Ben acts like I’m just about to go away for a few days and brings the family together for a group selfie. I look back at that photo now and it amazes me how everyone looks like it’s just another day, all big smiles, a happy family. We all look like we’re thinking, I’ll be OK, I’ll be fine.
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| Royal North Shore Hospital, 23 March 2018 |
The strangest thing is, there is no fear. I am resigned to the fact that I am ceding control. If it’s over, I’ve had a good run, everything considered. I did my best, have fought the good fight, and I have said goodbye with buckets and buckets of love. Helen and the kids will know everything I couldn’t find the words for. I go away thinking, these guys love you more than you’ll ever know. Good kids all, the best wife you could have imagined and wished for. It doesn’t matter anymore if Samra will be able to simply excise the tumour and save the pancreas, if he will even be able to save me. It’s too late. “No point worrying about what you can’t control” has been the driving motto for so long now, though it’s only been a few months. I have had a good life. I’m a lucky man.
The anaesthetist tells me to assume the position for the lumbar injection that will put me to sleep. It is the first time ever I undergo this and I have heard that it can be very painful. He tells me, the more I relax, the less the pain. It doesn’t hurt at all. He makes easy conversation. Tells me I will drift away in less than a minute. “Do I have to count backward from 100?” I'm actually being cheeky. No, he says. I have seconds before that deep sleep descends.
“What do you do?” he says. “I’m a journalist.” I’m sure he reads the apology in my tone when I add, “With News Limited. Rupert Murdoch.” He’s wearing a mask. I can see the smile in his long-eyelash Indian eyes. “That can’t have been easy,” he says.
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| Reverend Father Jim McLaren baptised one-year-old Sara in 1995, at St Patrick's Church, Summer Hill. Mum and Dad are with our eldest, David, and a candle-bearing Ben. |
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