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

Cathy Beesey Founder Stories Connecting Us 

Part 1: Wegener Anca Vasculitis, A Rare Autoimmune Disorder 

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

Chapter 2: So Many Drugs  

 I thank Dr Reynolds for saving my life. He smiles, ‘You have been diagnosed, you have a stellar team of specialists around you, there is treatment, the prognosis is good.’ Gently and with sadness, ‘If you hadn’t been diagnosed you would have continued to deteriorate, your major organs shutting down, dying a slow painful death.’ I am grateful to Dr Reynolds; I am grateful to be alive. 

John Fawkner Hospital, Coburg 10 February 2019  

Daily Caption: Day 2, Taking drugs I am fearful, Sunday 10 February. Awake at 4.00am filling more tissues with tears, thoughts racing, head spinning after some deep sleep. I begin to write. I write and I write as I sit waiting for breakfast, waiting for eight o’clock to take my first chemotherapy tablet, Cyclophosphamide 50 milligrams. I’m frozen: not able to move, to shower, do anything. A nurse arrives with my tablets, ‘Keep a couple of mouthfuls from breakfast as the chemotherapy and steroid tablets taste terrible.’ I eat, take my tablets and rush to shower wondering what will happen now I have started the chemotherapy, knowing my immune system is now compromised. My body trembling as I shower, dress, and return to bed taking deep difficult breathes trying to calm myself.  

Dr Reynolds visits 8.00am. As he leaves, he stops, turns and I think he says, ‘You are special.’ Did he really say this? I won’t tell anyone because maybe it isn’t true. And what would they think of me bragging about a complement, it isn’t good to brag about yourself. It’s not appropriate to say I got a promotion at work; do you know how significant this is? Do you know how senior I am and the powerful influence I have on education? I have never said any of this. When anyone is kind and describes my importance or being special, I become teary, there is no way I can speak. Or, I think I mightn’t have heard properly. Why do I feel like this? Why do I feel I don’t deserve to be acknowledged?  

I need and want to let my family and dear friends the prognosis and others who have been phoning and texting. My mind is doing what it does best: working out strategies and steps to deal with this catastrophe. Who to tell? When? How much? A bit of project management to help stay in control. My challenge will be to stay in the here and now and this is why I write, bringing more tears, rolling gently down my cheeks. 

If I try to talk with family and friends I will cry, it will be their voices. I won’t be able to speak. It will be easier to speak face to face, watching their body language and answering their questions. This is so complex and scary I don’t want them to be frightened like I am, to be confused. Stan and I spend time coming up with words to explain the reality and show hope. A set writing piece with a personal note added to the beginning and end of each message. Always the bureaucrat. 

I’ve had a wonderful team of specialists that have quickly diagnosed I have a rare overactive immune system condition. This can be managed with medication starting with a three-month program of tablets and regularly monitored by specialists. 

I’m trying to deal with this and not quite up to talking as the fluid in my inner ear is clearing and causing cracking and popping making it difficult to hear. The doctors are positive. At this stage I will be in hospital until Tuesday.  

I’ll know more tomorrow after meeting with one of my main specialists and will be in touch.

Much love Cathy 💜

Each of my messages ending with a purple heart or three. Choosing to reclaim my love of the colour purple. In my wardrobe, decades ago, I placed a sticker: When I am an old woman I shall wear purple, the first line of Jenny Joseph’s poem. The wardrobe long gone, does the sticker remain? Early last year, coming from I don’t know where I said to Stan, ‘Don’t organise purple ribbons for my funeral. And I don’t want people to wear purple.’  

My friend Daniela, preferring Danni, noticing my purple hearts sends: 

A heart is used to symbolise the emotion of love. A purple (violet) heart can symbolise a sensitive understanding and compassionate love. Purple can symbolise duty, honour, royalty, and good judgment.

My habit of responding to messages is to make some sort of commitment: speak soon, let’s catch up, creating an obligation. To keep clearer boundaries and remove any pressure I respond by sending my love and appreciation with a purple heart.

*

Stan and I together in my hospital room, ‘I am hurt Craig and Carrie haven’t been in touch to find out how I am.’ As the words leave my mouth, I realise they think I’m home, feeling better. I always get better, bounce back. Stan is quiet, he doesn’t agree, disagree, judge. I imagine they both have lots going on in their lives that I don’t really understand, especially Carrie but I do know they will do anything for me. I will ask them to tell my brother Bill, this is something I cannot do. Bill and I have a confusing closeness, we hardly see each other or speak on the phone but when we do it is like we spoke yesterday. When my father died when I was working in Canada it was Bill’s voice that made me cry deeply.

To Craig and Carrie, my nephew and niece, my sister Gloria’s children I add:

Could one of you tell Bill for me? He can only be contacted on his home phone. 

I cannot tell my sister Gloria, leaving through early onset dementia and death. I will miss her kindness and compassion, her sweetness.    

My cousin Linda and brother Henry know nothing of what has been going on. Linda is so important my life, family and trusted friend.  

Morning Linda and Henry

I’m quite unwell so letting you know what’s happening. I’ve been in hospital a couple of times because my GP thought there was something underlying my symptoms: ears and chest. 

So …

I will keep you informed and look forward to talking with you soon. 

Linda connects immediately. 

To my darling cousin Linda I am glad you phoned Stan to talk

I am feeling overwhelmed and scared, so many thoughts running through my head but mostly privileged and lucky to have a diagnosis by an extraordinary team of knowledgeable, personable specialists – I am being looked after in so many ways

Medication today and a meeting with my lead specialist to find out more

Look after yourself 

Much love Cathy 💜 💜 💜

My inner circle of friends, the ones I want to travel on this journey are Marg, her husband Andrew, Danni, and Cheryl. I send messages. And a message to my Gibson family. I hadn’t seen, known how much they loved me, how important to them I am. I’ve held back in some ways thinking I held a special place in their hearts because I made Stan happy. Their constant concern, compassion and contact has shown how privileged I am and what a wonderful family I have found. To find Stan and a new family, I am grateful. Messages begin to arrive showing I am loved.

*

My friend Danni visits, sitting on one of my orange chairs. I lie on the bed, ankles swollen from sitting in a chair all day yesterday. Danni my extraordinary friend looks closed in on herself, her brown shoulder length hair with blond highlights surrounding her face, shoulders rounded protecting her heart and her face showing sadness and confusion. Telling Danni more about the diagnosis I add, ‘It was probably easier for this extraordinary group of specialists to organise to visit on Saturday.’ Danni sighs, ‘They were here because you were so unwell,’ I am validated. As we talk, I share, ‘I began treatment this morning.’ Danni knows I believe it’s important to celebrate and acknowledge significant events, smiling she says, ‘It’s not like you always do, with the pop of a champagne bottle.’ This most significant event isn’t like that, it’s kind of nothing and everything. I can’t imagine what the next thirty days will bring. 

Alone, I flick through my travel photos searching for one to represent this most significant journey in my life. It’s there, a view of Palermo from Monreale, Sicily Italy. This will become my image, loving the composition with its contrast of dark and light, the thickness of the walls of the tower of the Cathedral of Monreale, the shimmering heat surrounding ancient buildings, produce being grown, the Tyrrhenian Sea, and the soft blue of the shimmering sky. I start this journey within the dark thick walls not knowing what will come, being drawn to the sea where I will swim again.

I try to sleep, my mind won’t stop, tears of fear and confusion, to a fantasy future where I will talk of this with others helping them deal with their own health crisis. I imagine myself going home, feeling great and then I am back to the dark, thick walls of my image, for now I am stuck. This doesn’t stop me going into the future again, imagining someone will be unkind. I don’t understand why I have this habit. I try meditation but I’m not quite sure what to do. I tell myself to stop going into negative spaces and imagine the view I love of the Ligurian Sea in Italy: Porto Venere. I am standing on the balcony of our hotel with the blue of the sky and sea and the grey of the historic bulding, surrounded by its beauty. My mind slowly leaves this image, and I take myself to our hotel in Cadaques, Costa Brava Spain on the third floor. Sleeping with the door open, the cool breeze on my skin and sound of water lapping against the rocks below. I can’t stay within these images, the ones that always bring calm and sleep. I am in that dark space, leaving only to give gratitude: To my gorgeous granddaughter Jade, gorgeous in every way, for making a connection between us and letting me know she understands. 

My eyes fill with tears as once more I read my message from Renee, Stan’s daughter and now my daughter, coming into my life as an adult. Stan has told her the name of the condition. She has been reading about Wegener Anca Vasculitis, learning the detail ready to talk, to help me understand. Jade living with Cystic Fibrosis shares with Renee, and Renee shares with me – Jade is excited and shocked to hear her Nana is in hospital, like she does, and Nana has a name to something that affects her body like she has, Cystic Fibrosis. 

*

Daily Caption: Day 3, So many drugs, Monday 11 February. Waking around 6.00am after the best sleep I’ve had in what seems like weeks my first thought: today is the second day of medication. Showering before my medication I wonder will this be better. I use to take Vitamin D and magnesium/potassium tablets and Pulmicort inhaler for asthma and that’s it. How will I take these drugs? Seven each day. Will there be a time when I cannot take them anymore? Hands shaking as I take my tablets. 

Dr Reynolds on his morning visit explains I will have a bone density and heart tests today. Blood test, diabetes test, morning tea and in between I diligently and dutifully make a list for my visit by Dr Jonathon Andrews. He arrives. 

‘How do I find out more about Wegener Anca Vasculitis?’ ‘I think you understand it well, I am not sure you need more detail at this stage.’ Jonathon gives the name of a website. I don’t write it down. 

‘How do I cope taking this medication? What strategies? What are the side effects?’ ‘Monitor your temperature if it goes up come straight to hospital. I will see you this Friday. It will be too long to wait for the following Friday. Then I will see you fortnightly.’ I want to visit Jonathon at John Fawkner Hospital because this is where my life was saved. 

‘Can I have hugs? Do I need to wear a mask? Can I go out?’ ‘Yes, you can have hugs, you will need them. I don’t think masks make much of a difference but if you feel better wearing one, do.’ 

‘Can I have my hair dyed?’   Jonathon smiling, looking confused, ‘Yes of course. Why do you ask?’ ‘A friend told me she couldn’t when she was on chemotherapy.’ ‘Don’t listen to friends giving medical advice. GO LIVE YOUR LIFE.’

Diet, exercise, alcohol? I don’t ask these questions, they seem unimportant. 

Sending a message to friends and family telling them it’s Wegener Anca Vasculitis so they can learn about it too. Why did I wait to give them this detail? Whose pain am I trying to ease? I sit writing: calm and focussed. This journal my place to make sense of what is happening, to keep me in the here and now and be vulnerable, where I can control the thoughts looping and swirling. Stan visiting, I share my morning updates, and as he begins to leave it’s time for my next test: bone density. All these tests I’ve never had a reason to have, until now.  

*

What a friend, could I ever find one better, more compassionate. Marg arrives with two champagne glasses, soda water and orange mineral water, and we cheer for the future; pretending we are drinking Champagne or a Spritz. Marg leans forward with her blonde curls touching her shoulders, blue eyes intense as I tell her more of the complexity of what is happening and that I want to stay connected and want her to visit. During the last two weeks Marg has visited, always checking in to make sure it is okay, except once. She walked in stating, ‘I couldn’t stay away, I had to see you. To be with you.’ Time for my heart test, I am not ready to leave Marg, I must. 

Janine, the technician doing my heart ultrasound is extraordinary. I know she is reading my mind not just my heart. As she’s reading my report, ‘I imagine you thought you were being pathetic, not really knowing how sick you were. Thinking you would get better soon and all you had to do was something different.’ I smile, ‘It feels like you’re reading my mind.’ I lie on the bed as an instrument moves around my heart and Janine adds information into the computer. ‘How did you know I was feeling this way?’ ‘I have many clients with vasculitis, and I know how complex the symptoms are and how hard to diagnose. And while this is happening women tend to blame themselves. They feel inadequate.’ Janine continues my heart test, ‘It’s important to manage your stress. Have you thought about meditation?’ ‘I can’t do it.’ ‘Neither can I, it seems to work for some.’ 

I talk of my friend Penny and how she has chosen natural therapies to deal with her cancer, ‘I am conflicted because I imagine she will push these views onto me.’ ‘You must look after yourself, stay away from people who cause you stress. A little white lie never hurt if that’s what it takes. Get counselling, it helps to talk about what’s going on for you and identify your triggers.’ After a pause Janine continues, ‘When someone goes through a life-threatening situation and how they manage it, is as much about who they are already. Scatty people get scattier, thoughtful people more thoughtful. It’s not about a huge change in your personality or who you are. Everyone takes their own journey in their own way.’ 

I am grateful I’m educated, respect the knowledge and passion of doctors without fear to communicate with them, take note of what’s happening to my body and wonder how others who don’t have these skills cope. The heart test finishes, ‘Your heart is strong. This is very good.’ I breathe, my shallow breath, and thank Janine for telling me about my heart and ask myself, ‘Will I still be who I was?’ 

So far tests are positive, looking after myself is paying off. And it is like everything is working in harmony with doctors coming at different times, timing of tests, nurses, and visits from Stan, Marg and Danni. I can’t believe it’s only been three days since diagnosis. There is no harmony within, only chaos and craziness and stress. I could have died! I could have died! This is what has caused tears to flow today. The thought of knowing, the thought of watching Stan suffer would have been the worst. I am not sure if I was to know I was dying I could show dignity. Tomorrow I will leave hospital feeling the serenity of our home and being able to move from space to space and feel the breeze. Apprehension: I will be without doctors and nurses surrounding me, ‘How will I cope?’ 

Gratitude: To my father for his strong constitution and the gene pool he gave, for the way he loved me unconditionally and being the kind of person that cared for others. Stan often reminds me of my father. I smile and sleep.

*

Daily Caption: Day 4, The colours are vivid, Tuesday, 12 February. Awake early, it is dark outside. I go with it, get up and shower, pack my bags and turn to the safety of my journal wanting to make sense of all of this. Edgy, wanting to make sure everything goes easily, no little thing gets in the way of leaving, I’m overly organised. That’s me, needing this now more than ever, making my journey as smooth as I can. I stop myself; I could have died. What do I care about these little things? 

Dr Reynolds, my hospital specialist, during his morning visit sits across from me, both of us in orange chairs. ‘I have your results. Your heart …’ I interrupt, ‘I know about my heart, it is strong. What is my bone density?’ ‘Let me start with your heart. Your heart is strong and healthy, extremely healthy. This is very good news, and I wanted to share it with you. Your bone density is what is expected at your age. No osteoporosis.’ Dr Reynolds confirms my appointment in his rooms at the end of February, smiles and quietly leaves. Always hungry, waiting for breakfast with the dread that I must take my tablets. At last breakfast arrives, ‘Thank you so much.’ The woman delivering my food smiles, ‘I love delivering food to you, you are so thankful and happy.’  

Nervous about taking my tablets properly, I ask the nurse lots of questions. She contacts Laura in pharmacy to come talk with me. Laura is wonderful explaining the chemotherapy is in tablet form but can have the same side effects as given intravenously. She also explains, ‘The difference for you is that when chemotherapy is taken when you have cancer, the cancer has already compromised your immune system. Your immune system wasn’t compromised before but now it is.’ Laura provides more information highlighting the important sections. Feeling safe and secure I will make John Fawkner my pharmacy.

*

In a daze, waiting and wanting to go home I can’t comprehend this is happening. Restless I go from one thing to another. A concentration span of around ten minutes seems to be it. It is as though I am looking down upon myself, sitting on this bed, in this hospital room. Anxiety in my stomach, low and nagging. Short bursts of breathing, my heart rate increasing. How will I know what is me and what is the medication? My life changing forever as I go home today. Calm, feeling things are under control and knowing the important thing is to monitor for a high temperature. How will I keep doing this for months? 

My mind is so powerful, much more powerful than this illness until it totally took control. I pushed myself, blamed myself for being lazy and thought all I needed to do was just pull myself together and I would be okay. Reading Dare to Lead Brené Brown writes, ‘Sick, unreliable, and undependable are huge unwanted identities for me … I grew up believing that illness is weakness … in our family being sick is lazy, and if you’re tough enough, you can walk off anything.’ I highlight this in red, resonating so strongly. Why couldn’t I see how sick I was for so long? Am I stuck in the belief and pride of getting better at age seven after having asthma? Being a good girl. Who knows? I decide this morning I will make an appointment with Ava Davis, my psychologist, one of my first things to do. I need to delve into these thoughts and feelings, to take control and learn. What a journey. 

I have thought from time to time that no one here really knows me, other than my symptoms, and what they glean of my personality. No one knows I worked in education for around thirty-five years, only Dr Jonathon Andrews knows what I do now. They know there is Stan my partner but always call him my husband. I am a body to be fixed. Alongside this are those extraordinary nurses and my team of specialists connecting on a level beyond what I do and did. What a contradiction, I valued my work and despaired when I left, this now insignificant. 

Looking out the window it is grey and overcast. Have I missed summer? Memories of the colours of our home and garden surround me, and as they do I give gratitude to the specialists coming together as a team to diagnose. My bags are packed. It is like when I travel: writing in my journal and taking photos. Although this is feeling like a very different kind of journey as I prepare to travel home. 

John Fawkner Hospital, Coburg 12 February 2019

Copyright Cathy Beesey, March 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