Margaret Innes

New Worlds: Reading, Writing and the Imagination

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8 Radiation Therapy Blues

During my first radiotherapy session, the PA system in the radiation room was playing Elton John’s Bennie and the Jets. Later it was Whitney Houston’s Greatest Love and in between any number of songs I didn’t recognise. Sometimes there was silence. Lying on a hard bed, hands above my head holding onto handles, being radiated with high energy rays, was an uncomfortable but also, puzzlingly, an out of body experience. A friend of mine who had gone through the same treatment said she would imagine she was on a beach and the whirr of the equipment was the sound of the surf. Because I was asked to hold my breath at certain times, I found myself concentrating on my breathing. The radiation therapists would position a small screen in front of my eyes. It showed a blue bar about two thirds of the way up and a yellow bar that moved up and down with my breathing. When asked to hold my breath I had to put the yellow bar into the blue bar so it turned green.

While this sounds mind numbing, it was the only thing I could concentrate on while I was lying there being radiated. For their own safety, the therapists had to leave the room while the radiation was being done. I was there alone with the sound of the machine, and either silence or whatever music was playing. It was a little like floating in some extra-terrestrial no-man’s-land, not quite like the star child in 2001: A Space Odyssey but still an experience that disconnected me from myself. The worst of it was the passivity. I just had to lie there and I couldn’t move. ‘Stop wriggling,’ I was once told by one of therapists and she was quite right. For this therapy to work, I had to stay still for the rays to find their right mark. If I had an itch on my nose or in the middle of my back, it was just too bad. It was bliss to get up, put on my blue gown, genuinely thank the therapists, who were all skilled professionals and very pleasant throughout, and leave.

There is a ship’s bell next to the nurses’ desk in Radiation Oncology. When your treatment is finished, it’s tradition to ring it. I gave the bell a good clang twice on Monday, had my photograph taken by one of the nurses, saw everyone applaud (also the tradition), thanked everyone, left my thank you card with the nurses and went out into the waiting area where my partner was waiting. We weren’t quite free yet, I had to see the medical oncologist. As she had been for every appointment I had had with her, she was stylishly dressed, competent, professional, thorough. She was pleased with my test results, advised me to keep walking, and made an appointment for me to see her four months later.

Then we were free, escaping out to the car park, dispensing with our masks once in the car and on the road home, seven months after the sonologist had said to me during my scan, ‘I’ll just get the radiologist.’ Even my hair is growing back though I can still clearly see the shape of my scalp. Little spikelets cover the top of my head like a fine, soft, and very close crew cut. My hair is darker than it was, which is a bonus though I would never recommend chemotherapy as a treatment for grey hair.

So for now it’s done. Thanks to all the readers of this blog for your generous and kind comments, all the feedback, and the friendship. It’s been a privilege to share the experience with you all and the most wonderful support throughout. My strongest hope is that you only ever have to read about cancer treatment and if you do have or even have had this experience, give you all my best wishes for a complete recovery. Thanks again to all the medical staff who were fantastic. And thanks to Medicare, which is so important for the nation’s wellbeing.

That closes this blog. The next one, I hope, will be on the subject of something wholly cheerful and happy. Best wishes to all.


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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.