Welcome to The Chemo Ward

by Jules

Sibylesque Chemo Quote 2 As I walked into the chemo ward for the first time my heart sank. I was overwhelmed by the smell of medicines, and the sight of everyone tethered to their chairs by towering drip stands. I wondered how I’d manage 6 more months of this place.  It seemed like such a depressing sight. But immediately I sat in one of those ugly recliners I noticed people chatting, the nurses joking with them, someone offering sandwiches and drinks on a little tray.

chemo art

I felt an enormous mutual respect, and a complete sense of calm as my fellow chair people calmly as their ‘weed killer’ (as my partner refers to it) coursed through their veins. Gradually over the weeks I spoke to my neighbour – a different person each session. I met grandmas making books of family photos with their grandchildren, a man writing his memoirs with his grandson, another man who’d been coming in for chemo for 11 years after lymphoma with his lovely wife from Uzbekistan, all sorts of interesting people with all sorts of amazing life stories. I began to enjoy the atmosphere, if not the side effects that came on even as I chatted…

Sibylesque Dali, Galatea 0f the Spheres 1952
 Various chemo buddies came with me from time to time- My friend Delores who has recently been through a leukemia journey insisted on coming, though I didn’t want her to have to go back into the chemo zone. My wonderful sisters came to stay and we worked on various knitting projects and crosswords together. One woman said to me, after we’d exchanged pleasantries, ‘If I get run over by a bus tomorrow after all this I’ll be furious!’ My sentiments exactly! And we laughed together. 

By my last session I felt quite at home there. It’s not the place, it’s the people in it that make the difference. Everyone has a great story to tell. And they are all battlers, battling to stay alive, just like me. The TV drones on in the background, ironically telling stories of war zones and people wanting to kill each other as we are fighting the battle to just stay alive.

Jules’ other insightful post, Chemo Journal I, can be found here.

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Jules is a perceptive observer and an irrepressible positive force as well as director and publisher for the Neuro Orthopaedic Institute, Adelaide, SA. 

 

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Photo Source: pinterest

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Chemo Journal I

by Sibyl Jules

Sibylesque Chemo Quote

How do you describe the old chemo trip which, incidentally, I finished 2 weeks ago after 6 months of 2 weekly cycles? This is only my experience- everyone has different sorts of chemo and some are much worse than others. My side effects were horrible on one drug, which I was spared after 4 cycles because of weird stuff happening. I never wanted to know what the side effects might be beforehand- then I’d only get them! A useful tip shared by an oncology nurse friend was to keep the literature they gave me as a reference if something did feel unusual or bad, and just read it as you need to. This helped me avoid worrying about things that might happen and to respond appropriately to them if they did.

chemo art

I can’t say chemo was easy, but when I meet with any of my ‘cancer club’ as my partner calls them, he always comments how happy we all are. We are, after all, alive, and eating, drinking (albeit a modified beverage of choice) and laughing with friends. I think that the last 6 months of chemo has taught me to enjoy and savour every tiny joy- cooking and sharing food and wine with good friends and family has always been an important part of our lives- so when chemo flattens me for a week, being able to eat and drink and meet friends again- or go to WOMAD, the happiest 4 days of the year as I know it- gives me much to be happy about. Every tiny joy helps…Look for them- they make you feel safe and help to stave off the anxiety and fear.

Sibylesque Apparition of the Visage of Aphrodite of Cnidos in a Landscape, 1981

Oddly, chemo has also reminded me how much I love my work. I’ve been able to work two or three days a week, throughout chemo. I found that focusing on thinking and working, surrounded by busy people doing interesting things has helped me to avoid the pitfalls of the ‘poor-me-illness-behaviour mode’, which I might be prone to without the focus! I’m lucky I can choose when I go to work and if I feel too bad I crash and burn, but usually I get some days in each week. I’m also fortunate I love my work. And having a supportive and loving family and partner has helped too of course. I’ve loved having old friends call up out of the blue, and have been overwhelmed by the incredible generosity and thoughtfulness of people around me. Totally unexpected and humbling.

On grumbling about chemo prior to treatment starting, a surgeon reminded me that I am very lucky to be offered chemo- a treatment that may help keep me alive. For some things there is no such treatment and for that reason I knew I’d just have to go with it, knowing that every 2 weeks, just as I’m beginning to feel a bit ‘normal’ again, another bus will run me over.

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 Picture 1Jules is a perceptive observer and an irrepressible, positive force as well as director and publisher for the Neuro Orthopaedic Institute, Adelaide, SA. And here is the Chemo Fashionista post of the fabulous Jules at WOMAD, Adelaide.

Chemo Fashionista

by Kerry Cue

Womad 2015 Festival vibe

The Truly Fabulous Jules

This is the Funky and Fabulous Jules at WOMAD 2015. She caught my attention because she radiated such a positive vibe. But she had a story to tell. Jules started a Chemo regime of treatment every two weeks – 6 months ago. She was heading back into ‘the chair’ the day after this photograph was taken. She is an example to us all. Grab life now. Celebrate now. Non of us know the future.

We, The Sibyls, thank Jules for sharing her positively contagious spirit and wish her a speedy recovery.

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Why We Cannot Imagine Ourselves in Old Age

by Kerry Cue

Jenni Diski quote

One thing that Diski (Restricted link: The Screaming Gynaecologist, London Review of Books, 4 Dec 2014) had not anticipated was sudden death. As we age we fear debilitation. We also fear having to – even if willingly – look after a severely debilitated partner. Diski is in her late sixties and has a tumour in her lung. After bouts of chemo the results are uncertain. The tumour was no bigger … nor had it shrunk in size. She had to adjust to living with not only a tumour, but uncertainty. Death hovered a little over 12 months away. Maybe extra time was bought with chemo.

Nothing is written in stone sibylesque

Suddenly, she was confronted with juggling fact and speculation, certainty and uncertainty. How does anyone do this? Diski offers no solution. But her situation is extreme. Her certainty is clear. She has a terminal cancer. Her uncertainty is extreme for she found herself tumbling back to the lacerating uncertainties of her youth. At 12 she’d been placed in one foster home after another following her mother’s catatonic breakdown. She never knew the rules of each new household. Is it OK, for instance, to go to the toilet during the night? She learned to make herself ‘invisible and inaudible’. When Diski was 15 years of age author Doris Lessing became her guardian. This brought it’s own complications.

We can all learn from Diski’s thoughtful piece. We cannot anticipate the troubles of old age. In Diski’s own words:

‘I will continue to live with uncertainty and my inability to do anything about it, the condition I’ve been trying to wriggle away from all my life.’

And so say all of us.

Photo: unsourced

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