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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9 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.