Margaret Innes

New Worlds: Reading, Writing and the Imagination


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8 True Heroes and on coming back to life.

The true heroes I have met during this whole progression from diagnosis to chemotherapy are many. There are the medical staff. Canberra has its issues and problems in the health sector, they’re often in papers with talk of dire consequences for both patients and staff. I can honestly say I have not met with any of those problems. From the ultrasound sonologist at the start who made her good pick of my tumour to the registered nurses in the chemotherapy suite who know how to insert a cannula without hurting you or leaving you in discomfort for hours, all these people have been professional, competent, careful, concerned, pleasant. A special shout out to the breast care nurses who have been uniformly brilliant. Then there are the volunteer ladies who take the trolleys around in the chemo suite, offering tea, coffee, fruit juice and as many biscuits as I could want to eat while stopping for a chat. In between are the administrative staff who book the appointments, make the phone calls, send you the referrals. The complexity of the whole process, the fitting together of medical procedures, tests, follow-ups, actions, and aftermath is like a kind of three-dimensional, time-based Lego building plan where everything has to fit together. What’s at stake is not a structure to admire for its intricacies and beauty but someone’s health and life. For me so far and for now, it’s worked and this is my thanks.

But besides everyone listed above, there are other true heroes who are closer to me: generous and good-hearted friends who were there when I needed them; people who read this blog and were themselves generous enough to write messages of support and affection; and my partner, for whom no amount of thanks will be enough.

There were times in my first few days after chemo when I wondered if recovery was possible. That passed and before the end of the first week I’d gotten my mind back. I still found chemo doesn’t leave the body that easily. It has a taste and a smell, especially in the first two weeks after infusion. That taste was the first thing I noticed in the morning and there was hint of its smell in my clothes. I thought it was a curious taste and smell, a mix of the chemical and the human, a mirror to the purpose of the therapy itself, to kill the active cancer cells in my body. Those cells may be dangerous, even deadly, but they are still something my body makes, they are a part of me. That is what chemo has to do, remove the toxic part of me with its own toxicity. This is what every cancer patient having chemotherapy has to deal with. So I’ll always say, people don’t ever lose their battle with cancer; it’s the treatment that loses that battle.

During the second week after my first infusion, when doing something so ordinary as putting the washing on, I realised I was walking and moving with a sense of some energy. By the beginning of the third week I found I had my sense of optimism back, the pleasure in just being here. My walks into the nature park were getting longer and longer. Sitting at the computer now, writing this blog, glancing out at the autumn colours in the garden and seeing small groups of magpies foraging for insects, is to feel very alive.

I still have two chemo sessions to go, the next today once I have posted this blog. What I’ve taken from this whole experience is something I would say to anyone who is about to go through it for themselves: never forget who you are, what you like to do. A mind can take you anywhere and you need to indulge it. For me, next it will be walks in the autumn sunshine and Jane Gardam Old Filth novels as soon as the ACT Library service delivers to me all of her books I have on reservation. In the meantime my cycle of chemo and recovery goes on for another four weeks. Not too long now. The end is in sight. My next blog probably won’t be for a fortnight or more while I try to think out in greater depth what this all means.


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6 Chemotherapy or The Hunger Games

The question I asked myself most before my first chemotherapy session was what would I read for the three hours I would be sitting in the chair? I stashed a small collection of books into my bag and with my partner, headed down to Building 19 at the Canberra Hospital, their cancer centre, and then to the fourth floor where they do what they call the infusions. There was, as always, an education session to start, meticulous and detailed and another collection of papers to add to my portable filing cabinet. I asked, will my hair fall out? The nurse said yes regretfully. I accepted this as inevitable and then it was into the large room where everyone else is also being infused. Later there would be a young Asian woman ushered into a chair not far from me. She had the most beautiful long shining black hair whereas mine is only fine and grey. We are both doomed to lose it.

Since I have always mostly associated the word infuse with aromatic ingredients in cooking, it made me a little sad to think of it in this context. But it’s accurate. After putting the cannula into my arm, the nurses arrived in full protective gear, including gloves and eyeglasses, double checked the drugs and began the process, the slow infusion of docetaxel and cyclophosphamide into my bloodstream to counter whatever possible cancer cell might be there. Which is why I have likened this whole process to Suzanne Collins’ novel The Hunger Games. The drugs are poison: they take your hair, your energy, your cancer cells, your white blood cells without discrimination. In other words they make your body fight against itself for the survival of either the cancer or you.

To prevent nausea, one of the hospital’s pharmacist had given me steroids to take the day before, during and after chemo, with the unexpected warning they might give me nightmares. They did no such thing, they gave me a three-day high instead where I thought there was nothing I couldn’t do. Probably a good attitude to take into a chemotherapy session and one that went well with the book I chose to read, a book from a vibrant local publisher, Recent Works Press, a wildly imaginative, innovative collection of prose poems about loss called Errant Night by Jerzy Beaumont. Very simply put, to deal with grief he travels the stars and the universe, returns to where I was in Canberra Hospital to come face to face with the loss of someone loved before going out into the universe again. I speak of this book because, even given where I was, there was something close to exhilarating about reading of imaginary journeys to the far reaches of the universe and all its way stations to deal with grief while sitting in a chair having docetaxel flowing into my veins in the very location that is at the heart of the book. It was in its way a comfort, that wherever I am, my mind can go anywhere. I, all of us, always have that freedom to imagine, to find ways to feel and grieve, to read and to think.

There were other true heroes beside the nurses and the patients in the chemotherapy suite that day. There are the volunteer women who wheel trolleys around with tea, coffee, juices, biscuits (Arnott’s assortment for the nostalgic), cake, sandwiches and who stop to chat and laugh. The hospital also serves lunch, hospital food but it’s there for you. And when it’s all over and the cannula is thankfully taken out of your vein to be replaced by a round white dressing and you get a little shakily to your feet to go home, the nurse comes to wish you the best. I have to come back the next day for a pegfilgrastim injection to boost my white blood cell count. This is the process, a serious gladiator fight within the confines of your skin, within your system. It will keep happening until the doctors think they have done enough to save you from yourself. What I have to do now as a patient is navigate the battleground they have created inside my body to achieve that end. 


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5 Oncologists can be persuasive.

When I saw my surgeon for my follow up appointment after surgery, he was obviously pleased with how the operation had gone. The incisions were healing well, the margins around the tumour were all very clear. He smiled at me. ‘You won’t need chemo,’ he said. The moral of this story is, don’t take your oncological advice from your surgeon. However skilled they are, this is not their area of expertise. The oncologists I saw had a very different opinion.

I took that false confidence into my first meeting with the radiation oncologist. Radiation I knew to expect; three weeks of it instead of four because the margins were clear. We began, as usual, with education and detail. The registrar took all my facts again, I received another thick sheaf of paper to add to what I had begun to call my portable filing cabinet, a thankfully discreet bag from Bosom Buddies. Then the oncologist herself appeared, a young woman with long fair hair.

Everyone brings a demeanour with them when they walk into a room; they’re at ease, they’re ill at ease, they’re nervous, they’re self-possessed. Her first glance at me was serious. She took a seat and began to explain to me they had received the pathology results for the tumour. It had not reached my lymph nodes but had been active, its growth pattern one that would have seen it move out into the rest of my body. They had removed it but what else might be left behind that they couldn’t see or test for?  ‘It’s fifty-fifty whether you need chemotherapy or not. You’ll need to speak to the medical oncologist,’ she said. Her words were measured but her demeanour suggested she saw this as troubling.

I went home thinking again of the front cover of Marisa Acocella Marchetto’s Cancer Vixen and its drawing of a woman spectacularly taking a fall.

The medical oncologist was the same one I had consulted last time. I remembered her as a no-nonsense woman who was a stylish dresser. This being the time of Covid, we had a zoom session. Between her and her registrar, they laid out the situation. The tumour was unusual, an unexpected combination of pathologies. They could not tell if there were still microscopic cancer cells present. There might be, there might not be, there was no test to tell. If there were, they could reappear some years down the track as what is called metastasised distant breast cancer. ‘If they do, we don’t have a cure for that,’ said the oncologist. It would four sessions on the second tier of chemotherapy drugs. Horrible but by no means the worst possibility.

They spoke of it as being my decision, laid out the facts and the possibilities objectively but I could read the room; they saw the possibilities as troubling. I was reminded of both the sonologist and the radiologist I spoke of in my first blog. Without tests, they knew accurately what they were looking at pretty much as soon as they saw it. That kind of knowledge can only be gained by experience. To my certain knowledge, my medical oncologist is a very experienced doctor.

It is an odd thing, a precautionary gamble. Distant breast cancer might still happen even with chemo, it might not happen even if I do not have chemo. The percentages of those chances are low but they are possible. I write thinking of a line of William Blake’s poetry, ‘What is the price of experience?’ He goes on to write, ‘It is bought with the price/ Of all that a man hath.’  I couldn’t help but think that all the years of experience the medical professionals I consulted had collected between them meant they knew almost intuitively what they were looking at. I brought my own judgement to the decision. I said I would go ahead with chemotherapy, as another step along the way.


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4 Drawing on the skin

Just before I went into the operating theatre, my surgeon appeared in the ante room prepared for my surgery and carrying a Texta. ‘This is what we’re going to do,’ he said and proceeded to draw on my breast with that same Texta. On my skin appeared blacks lines, a map the surgeon was to follow with precision. I can now look into the mirror and see scars where he very neatly drew those black lines.

As for the surgery itself, one moment I was lying on the table, hazy with whatever they’d given me but chatting away to the anaesthetist and the next I woke up in the recovery room, with all manner of incisions, extractions and stitching of my own body done without me, very fortunately, being aware of any of it. I unreservedly give a heartfelt thanks for all those medical people involved in inventing anaesthesia. If there’s a monument to them somewhere, I will go and lay flowers on it.  

From admission for surgery to arriving in the ward for recovery is the strangest of journeys. You undress from your own clothes and in readiness put on your surgical gown, paper knickers, plastic shoes, hair covering. Once you were yourself in your own clothes, now you are in uniform, a patient. You wake with your body opened and reshaped, pieces of it gone, the incisions stitched like your skin was a piece of material, hoping your surgeon is a good seamstress. Then you enter the unreal world in the ward where you subsist between recovery and the prospect of your own life outside. Flowers brought by friends are vivid and living colour in that grey and white environment with the constant, essential humming of its life machines.

 I only spent two days in the ward before I was discharged. My good friend, a breast cancer veteran herself, visited and brought red roses. Other friends sent bunches of flowers. My partner visited both days. All the care I received from both the doctors and nurses was excellent. As for the food, it brings home to you that at its most basic, food is just fuel after all. Always the nurses were busy and sometimes abused. I lay there one night in that strange halfway world of shadow and muted lights listening to a woman in the corridor outside repeatedly and aggressively call the nurses untrustworthy bitches whose faces were filled with lies. They tried to calm her, offered her food, a cup of tea. She only wanted to go home and said they were imprisoning her. In distress, she begged others to call the police. Finally the ward manager called security, she had no choice.

It’s essential to be there, you know it. Your life depends on it. And yet. It feels so much like finding yourself as the unnamed character in a sci-fi movie, stripped of your own clothes and identity with no way out of an unknown institution. Where others smile while directing you to unnamed buildings for who knows what purpose.

It’s not like that, of course. When I was discharged, I left with a smile and best wishes from the nurses. Stepped outside on a sunny day in my own clothes with visits from the community nurses already arranged. And yet. Anaesthesia, surgery has changed me as it changes everyone. Not the obvious change with its cuts and excisions but a subtler sea change, of feeling the fragility of the body and its plasticity, seeing again that fine and delicate balance between life and death.


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3 Everything is Pink.

When my close friend had her biopsy which on analysis would show she had a fortunately slow growing cancerous tumour, the breast screen clinic gave her a massive amount of information in a large bright pink bag, emblazoned in large, even pinker letters with Breast Screen Canberra plus a logo. My friend was travelling by tram and rather than announce her situation to a tram carriage full of strangers, asked if they didn’t just have an ordinary shopping bag. She went home with a plastic bag laden with booklets, pamphlets and papers. One of the first things you find out when you are diagnosed is how much information people have to give you and how overwhelming it can feel. And that everything, everything is pink.

Lest anyone think otherwise, I know it is absolutely vital to come to grips with those parts of this information which apply to you. But it’s always pink. Breast Cancer Network Australia mailed me My Journey, a guide to early breast cancer. It covers everything from diagnosis through all aspects of treatment to a financial guide on the costs. It is well written and easy to follow, each section tabulated and clearly labelled. It has advice for everyone wherever they sit on the gender spectrum. And wherever you sit on that spectrum, the colour is pink.

In the accompanying leaflet, the women are wearing pink and the little female figurine symbolising the network is pink. The Jane McGrath Foundation, which funds breast care nurses including the one helping prepare me for chemotherapy, uses pink as its signature colour as does the Sydney cricket test each year in support of breast cancer funding. As a logo, pink means all these dedicated support people really do care and want you to survive.

But what is it with pink? Why choose that colour for this disease? Is pink a particularly female colour, as in blue for boys, pink for girls? Men can have breast cancer as well, rarely but they can. Yellow, of course, is taken by the Cancer Council for daffodil/wattle day in August but that still leaves effervescent green or the deep gorgeous red roses can have. What about the blue of Wahlenbergia stricta or native bluebells as they are called by us as well as those names they would have in First Nations’ languages?

Alas, no. Pink is the accepted colour and learning how to navigate your way through large amounts of medical information about breast cancer is a lifesaving necessity. Given how any cancer treatment taxes people’s strength and how brutal chemo is, pink is anyway no longer a soft, cute and cuddly colour. Associated with breast cancer, it means out and out, unconditional and unreserved strength.


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A Diary of Close Encounters of the Medical Kind

2 Fellow Travellers

Once diagnosed with breast cancer, I started to think how many people I had known in my life who had had cancer, most especially those who had died. Among those lost, an old, old and dear male friend from university days, another, a woman I had known since I was sixteen, lately the former husband of a close friend. They would always come to watch the Boxing Day cricket test on television with us and recover from the day before. The close friend still does. There are others I have only heard about. People I knew only as acquaintances or those reported in the media, loved actors and musicians, writers and artists, sportspeople. Their memory brings into my mind a line from The Wasteland: I had not thought Death had undone so many.

Others I know have been treated successfully. Too many women of my age who have had breast cancer but all of whom have gone back to the usual business of their lives, work and family, study and one day if ever they can, travel. For two of my friends, the treatment has been fierce, and for one, an on-going part of her life. My friend whose treatment is on-going was originally diagnosed with melanoma, a reoccurring issue for her during her adult life though one that’s been at bay for five years now. Her doctors have a watching brief: her treatment includes regular scans, exercise, counselling. After I’d come home with my sheaf of referrals, I spoke to this friend about what each of them might mean. ‘PET scans are a breeze,’ she said. ‘You can snooze if you want. MRI’s are a pain. They are so noisy.’ Every person I know who has had an MRI scan says this same thing. When I went for mine, the technician handed me a set of headphones and asked if I wanted classical music or easy listening. I asked for classical but I might as well have had Death Metal at full volume once the sound of the MRI cut in, like jack hammers in my ears.

The second friend of mine whose treatment was fierce had twelve sessions of brutal chemotherapy for deeply serious cancer. She came through it all though when I saw her next perhaps she had lost half her body weight. I am scheduled only for three and to my second friend and her twelve, as the Kid says, I dips me lid. I think how much a part of life cancer and its treatments can become, how it can invade not just your body but your waking hours, whatever you would ordinarily do with your time. It’s a menacing doppelganger shadowing you wherever you are and if you let it, it will try to consume your body and your life. It’s a fight with death but as my two friends showed us all, fight hard and we can win ourselves some extra time.


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A Diary of Close Encounters of the Medical Kind

1 Diagnosis

It began with the ultrasound sonographer saying, ‘I’ll just get the radiologist.’ I had been diagnosed with breast cancer once before, ten years ago. Ever since I have had yearly mammograms and ultrasounds. I had put off last year’s due to Covid-19, thinking it had been a decade, did I really need to worry? My doctor, on the cusp of her last day before she retired, sent me a new referral marked ‘Utmost urgency.’ It was the old procedure, cold jell and the press of the transducer on my skin while I looked at shifting monochrome images on the screen thinking, this is me reduced to those sea-like waves. Before I was released to go home on that day, I had learned from the radiologist that one of those images was almost certainly cancerous, a diagnosis confirmed by the pathology results. Even before my appointment with the surgeon, I was given a barrage of referrals for other tests I had to have. I was on a medical treadmill and there was nothing to do but see it to the end.

Later when the same radiologist was preparing me for surgery, he said to the sonographer ‘This was a good pick.’ Later again, discharged from hospital and discussing the pathology reports with the oncologists, radiation and medical, I learned how good. A just in time good pick of an aggressive tumour about to get into my lymph nodes. The medical oncologist made it clear it would be foolish if I did not have chemotherapy whether I liked it or not. My partner berated me on the way home: ‘Don’t you ever let another test slip by like that again!’

I remember thinking how bright everything looked on that journey home, how vibrant the trees and the sky, how brilliantly white the feathers of the cockatoos. How sweet things immediately within your grasp become when you come face to face with understanding there is only a breath between life and death, that life is a balancing act on a tightrope, and I could easily have slipped another way altogether. I am still not sure I am securely balanced on it.

During my last bout I bought a graphic novel account of breast cancer treatment called Cancer Vixen by Marisa Acocella Marchetto. On the front cover is a woman spectacularly taking a fall. That is how it feels. So, I have decided to keep a diary and post it on my blog. Chemo this Friday and I have a pile of information on side effects to prepare me. It is a matter of charting where each step takes me from now on, who I meet there and the outcome, while still thinking there is nothing like fate to trip you up.


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7 On waking up in No Man’s Land.

The day after my first chemotherapy infusion, a Saturday, I was still high on the steroids I had to take to prevent nausea and it buttressed me from the chemotherapy drugs’ full effects. Sunday morning, the high was gone and I woke to be face to face with the unvarnished effects of their search and destroy mission against the existence of any cancer cells I might have in my body. Like all other chemotherapy patients, my body and me were the collateral damage in the fight and in a tussle between chemo and my cancerous doppelganger, it was no holds barred.

For the next two days my head seemed filled with a thick yellow miasma, impenetrable and unbreathable like the bushfire smoke that had blanketed Canberra and the southern regions after the black summer bushfires. It felt that every life force had stopped in the wake of a catastrophe. It hollowed me out, leaving behind an emotional fragility where I was teetering very finely on the edge of slipping into a very dark place indeed. I couldn’t concentrate enough to read and felt too ill to do anything much, even listen to music. I retreated into my head, repeating well known excerpts from loved pieces of writing or running scenes from my favourite movies through my mind to keep me balanced.

Then on Tuesday morning I woke up in a bath of sweat. It was the last of the drugs exiting my body. I remember thinking in a very practical way, I’ll need to change the sheets and then realising for the first time in a number of days I had a clear mind. I had woken up in no man’s land where my recovery from the last four and a half days might really begin. I started by sleeping on and off for 18 of the next 24 hours. After that, it was navigating the side effects.

Before I had left to go home after the infusion, a hospital pharmacist came to give me 50 anti-nausea tablets and as well, five injection ampoules together with a 24-hour emergency number for the community nurses should the nausea be uncontrollable. I did not need to use any of these things but it did give me the insight into just what chemo can do to someone physically. The aftereffects I was experiencing were in many ways mild: nose bleeds, a searching and lasting fatigue, muscular ache eased by Panadol, limited concentration. All things able to be dealt with until, as the nurse had told me I would, I began to lose my hair.

I remember I looked in the mirror and thought my hair was thinning. Extra strands began building up in the hairbrush during that first week on to be combed into the bin. Fine shining threads of hair littered the bathroom floor and were visible on the hall runners. Towards the end of the second week, my hair was coming out in handfuls in the shower. Me and my partner took to standing in the back garden where I picked the hairs out of my turban and he brushed away whole clumps to be scattered around the garden. ‘Oh, my, oh, my,’ we both said and to our credit, we both laughed. Even now after my second infusion, we can still come across those clumps of fine grey hair in the garden, covered with frost and dew and shining in the cold, late autumn sun like finely spun filigree. And for the very first time, my partner, who had first started losing his hair before he was thirty, had more hair than I did.

I went back to the mirror and started studying what I could now see now I had only the thinnest brush of a few pale hairs to cover my scalp. I said to myself, this is me. That’s the shape of my head, what my ears look like, the set of my features. For four sessions lasting into late June, chemo has stripped me to the essential features where nothing is concealed. I’m stuck in that fight between my cancerous doppelganger and the drugs and for the next two months I have to learn to navigate no man’s land.