Learning to live with an autoimmune disorder – A mosaic of my journal

Cathy Beesey Founder Stories Connecting Us

Part 3: On A Treadmill

Chapter 12: Drugs to Treatment 

The link to my memoir Contents and published chapters is at the end of this post. 

My journey of drug taking begins on 24 January 2019, prescribed by Dr Luke Jones Ears, Nose and Throat Specialist: Prednisolone 25 milligrams, two tablets daily for four days and Dymista a nasal spray smelling and tasting like petrol. Dr Nico Rossi GP, 27 January: ProCalm, I don’t take them. In hospital from Tuesday 29 January Dr Reynolds prescribes: Panadol for a high temperature, drip for antibiotics and nausea medication. Maybe there were more. 

Leaving hospital Saturday 2 February 2019: Pramin 25 milligrams and Cephalexin 500 milligrams capsules. It’s all a blur, my only reference the packaging. Returning to hospital Tuesday 5 February once more in the care of Dr Reynolds: Panadol and a drip for antibiotics and nausea medication. Friday 8 February, I take steroids, two tablets of 25 milligrams. Sunday 10 February my first chemotherapy tablet. Monday 11 February full treatment: Prednisolone two tablets of 25 milligrams, two chemotherapy tablets Cyclophosphamide 50 milligrams, anti-nausea, antibiotics, and Vitamin D. 

So Many Drugs, Melbourne Australia

Daily Caption: Modern medicine, an art and science, Wednesday 13 February. My diagnosis of Wegener Anca Vasculitis was extraordinary, the prognosis is good but the drugs, appointments, tests and everything in between is daunting, overwhelming, and terrifying. The shock of being on chemotherapy enormous, my immune system now compromised, vulnerability within and around. This autoimmune disorder I’m learning to live with can be fatal without prompt medical treatment, the drugs preventing organ damage and failure. 

Wondering if the steroids do the healing while the chemotherapy destroys my immune system. This is a question for Dr Jonathon Andrews, my ongoing specialist. How did they discover this combination of drugs to treat Wegener Anca Vasculitis? Amazing, with drug companies so maligned, their drugs saving my life. Gratitude: To the medical scientists of the world with their brilliant minds.

The thought of taking these drugs, my breathing and heart rate increase. I know they will keep me alive but it’s so foreign swallowing all these tablets. How do I get through this? How do I plan my mornings? Awake so early filling in time before I eat and take my tablets at 8.00am. Fearful one day I will lose control, that’s it control, drugs now control and I don’t know what they are doing. Grateful to be alive, I know the test to come is the impact of the steroids and chemotherapy, these drugs I take every day and my body’s response. Am I on a treadmill to wellness? 

*

Daily Caption: One week of medication, Monday 18 February. This morning is quiet, it is dark, I’m alone, it’s 4.30am. Moving from one thing to another, doing things: writing, reading, watching ABC News Breakfast, emptying the dishwasher. The sky beginning to lighten, the colour of navy, waiting for breakfast until seven thirty, taking seven tablets beginning at exactly eight o’clock. Obsessed with taking these drugs at 8.00am each day. Remembering in hospital the stress of taking my first chemotherapy tablet and it was only last week, alone, watching myself from above. Waking in hospital my first thought, overwhelmed with anxiety was taking the drugs that would keep me alive. Day seven at home, waking 4.00am drugs no longer my first thought. 

I create a space in our pantry for medication, separate packets of drugs in a large container. The Webster Pack of drugs sits on top with my thermometer nearby. Wanting to make this real, with small changes, important changes. I take photos: my drugs on the table as I wait for 8.00am and drugs stored in the pantry.  

*

My sleeping patterns totally controlled by drugs with steroids allowing between four to six hours sleep, sleeping tablets giving more: competing forces. Crickets crazy in my ears as I lie down to sleep. Crickets outside, making me smile. My crickets won’t still. 10.30pm, a party across the road with the base reverberating through my ears and head. Remembering Dr Jonathon Andrews’ words, ‘The sleeping tablets will help you go to sleep but won’t keep you asleep. You won’t feel drowsy the following day. You need sleep.’ I can’t get away from the music. I try visualising, I can’t begin to do this. The music is too in my head with harsh dark memories returning, the pain and anguish caused by my ears. My struggle with taking sleeping tablets is suddenly over, I take one. Waking during the night, it is quiet, more sleep. It worked! 

My friend Marg visits, with a gift, always symbolic. A Peace Lily plant with luscious green leaves and white flowers, ‘To help you sleep.’ Sitting on the deck in our place of comfort, lunch made by Stan: calamari and salad and home-made Strawberry Friands. Talking, laughing, sharing stories, many about the frustration of not sleeping and my challenge with taking sleeping tablets. Always, will I? Won’t I? I share with Marg, ‘My lack of tablet taking comes from my mother. In the sixties she took Valium. They were in vogue, and she was a worrier. She stopped this addiction. You know I had asthma from when I was four to age seven. After I was seven my mother didn’t want me to take tablets of any kind. If I had a headache she would say, “Have a glass of water and see how you go.” Or, “It is nearly dinner time you’ll be okay after you’ve eaten.” Or, “You’re going to bed soon.’” In my whole life I have never taken a sleeping tablet or anything like Valium.  

*

Marg and Andrew, our friends, visit, they are early. Marg is never early, explaining they were ready to come, wanting to see me, to be reminded I am looking well. It is wonderful to see Andrew, his first visit and he holds me tight. On our deck, I share, ‘In hospital, somehow, I got it into my head the treatment was for thirty days. Now I know it is for three months. It feels so long.’ Marg, ‘Think of it as three lots of thirty days.’ 

Sharing with Marg my second Webster Pack of drugs she notices the anti-nausea tablets are missing: confusion, anxiety, despair. Before bed I check, more confused, in the morning I know the tablets for today aren’t correct. Striving for calm, wanting to wake Stan, I don’t. I read the treatment plan placing today’s tablets on a plate, checking them against tomorrow’s, working it out. The chemotherapy tablet was on the plate, immediately I put it in the dishwasher. When Stan is up, I will explain why, not wanting him to be near the chemotherapy tablet residue, it is a poison. Always anxious, am I doing it right? The enormity of going from a couple of vitamin tablets and asthma medication each morning to this array of tablets: different colours and sizes. Re-checking the Webster Pack, one mistake and I am even more diligent. 

*

Two weeks of drugs and my mind swirls, dark thoughts of giving up, not quite doing the right thing, falling into bed unable to move, do anything. At other times when I have been unwell in those darkest of moments, I have thought I won’t take the medication and see what happens. The drugs, my treatment each morning still terrifying. Will there be a day when I decide not to take these drugs? Will it all become too much? Will I choose to not fight? To lie down and die, letting my body do what it is trying to do, destroy me. 

*

Leading into the weekend instead of Friday drinks its Friday drawing. Looking forward to the weekend with a sense of no work to do, my new work of learning to live with a rare autoimmune disorder. Boxes of tablets on the table, rubber gloves protecting my hands from the chemotherapy tablets I organise them for four weeks in my new purple container, sort files and organise appointments, doing what I need to do. Daily Caption: My weekend was filled with moments of joy, four weeks of treatment today, Monday 4 March.

Each month I organise my tablets against the treatment plan. In the beginning wanting Stan to check what I had done, as fear lessens I do it alone. My tablet organiser defining time, linked to my appointments with Dr Jonathon Andrews. Routine taking me from high anxiety to slightly less. Taking drugs, tablets, my treatment is still an event but not as confronting. It is what I do each day, and it is now who I am. Daily Caption: Always something to fear. Wanting, needing to check, double check side effects of the drugs I take, 10 March.

On the day I left hospital Laura the pharmacist at John Fawkner Hospital provided copies of information on each of the drugs I would take, highlighting the important points. If you experience this: inform your doctor and if this: attend the nearest hospital. Today, stressed I cannot read, my hands shaking: essential tremor and my eyes can’t adjust: a symptom of Wegener Anca Vasculitis. Stan reads the information out loud.

*

So many changes to my body coming one after the other. I know the steroids are kicking in, taking over. What could the other drugs be doing? Steroids, the treatment I once craved, giving vitality and creativity, my body now changing constantly and dramatically: depleted of strength and muscle tone, a rare side effect causing pain in my left hip and fatty deposits taking over my face, neck and stomach. Thoughts of these physical changes sneaking up, consuming. What will happen next? How will I deal with this? As we sit my friend Danni hesitantly says, ‘I have never seen you cry so much. I cannot remember you crying.’ She wonders how long this will continue as I wonder how many tissues of tears I will fill, ‘How long do you think I can put this down to the steroids?’ Danni smiles, ‘Not for too long, I am uncomfortable with your tears.’ 

Creativity, feeling manic, this is what the steroids gave as I made sense of and understood quickly, with a sharpness that gave strength. Maybe I was the only one who saw this. I am not going to ask others, this is my story. There is no right or wrong, there is only what I feel, think and believe.  Daily Caption: Ava Davis, psychologist appointment, Tuesday 26 March. My fear of being manic and confusion with what is happening: wondering who I am and feeling more like myself, contradictions. Ava has spoken to a psychiatrist for advice on steroids. If I were truly manic, I would be in hospital. The word manic being used in a general way rather than the medical definition. I am okay with this and will stop saying, ‘I am manic.’ 

*

Daily Caption: 8 weeks of treatment, Monday 1 April. My limited knowledge and my friend Marg’s curiosity connect, Marg wanting to know the names of the drugs I am on. I give her the treatment plan from the pharmacy listing the drugs and side effects and the boxes of tablets, helping her make sense. I never know the names of drugs, describing them as steroids, chemotherapy or in what they do, anti-nausea, sleeping tablets.  

Lighter of spirit, calmer and more positive about the arduous day to day living I do. Despair isn’t as strong, knowing in my heart I could stay on this treatment for the full six months if that is what I need to do. Noticing my language is changing from drugs, tablets, medication to treatment. Treating my condition, saving my life, giving an opportunity to lead my life with authenticity. 

*

Morning routine disrupted with I forgot to take my tablet last night, the new drug. Dam, fuck, this is the only time I have stuffed this up. More evidence I am not perfect, putting the alarm on my phone as a reminder. As I tell Ava Davis psychologist she asks, ‘How long have you been taking these tablets?’ ‘Four weeks.’ ‘How many have you missed?’ ‘One.’ Her message: be kind to yourself. My response: I am an imperfect perfectionist. A different day: I cannot believe I stuffed up my tablets. How could I? Forgetting to add my anti-nausea tablet, I now know their effectiveness.

It has been a month since I stopped the chemotherapy tablets, I am coming to realise how much they impacted on my body. Stan has always said, ‘Chemotherapy tablets,’ it didn’t make it sound as bad to him, not having to go to hospital weekly or monthly, but it is still chemotherapy, and it was debilitating. What I say, what Stan says sets up what others think and know. Now that I realise the impact of the chemotherapy, I am not sure I was being true to myself and others. 

Feeling sluggish at my appointment with Dr Nico Rossi GP, ‘I loved the feeling of the steroids. I am missing them. I know the damage they are doing to my body but … It feels like I am coming down from illicit drugs. Not that I have ever taken them.’ Nico explains that some people love steroids, others don’t, and my response is understandable. Today I don’t feel great, not even that good; thoughts of the side effects of the treatment I am on, have been on and how much it will impact into the future. What is to come? 

*

Learning to sleep without a sleeping tablet, following the same pattern the sleeping tablet creates: relaxing, breathing slowly and deeply, gently pushing my head into the pillow, waiting for my eyes to become heavy and fuzzy, sleep follows. It is only now I truly understand the benefits of sleeping tablets, assisting my recovery. What would I have done without them? Although a habit of a lifetime has not left, I cannot take a sleeping tablet without an annoying conversation in my head, ‘Do I really need one? Maybe I could wait for another fifteen minutes.’

*

Finding out I am in remission I take two photos of the empty packets of medication: one with them in the John Fawkner Hospital Pharmacy bag and one spread on the table. When I first began treatment, I couldn’t throw out the empty packets. Firstly, I wanted to check I had organised the tablets correctly and secondly, I thought of the image and power these empty packets could create. An image that represents overcoming my fear of taking tablets and the place of modern medicine in saving my life. Without this treatment I wouldn’t be here, I cannot begin to imagine.

Drugs to Treatment, Remission 7 July 2019

Copyright Cathy Beesey, May 2025. All rights reserved; this intellectual property belongs solely to Cathy Beesey.

This is the link to my memoir Contents and published chapters. 

Grateful – Contents