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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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.


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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.