Julie Morgan is a former lecturer in ethical leadership and senior consultant on organisational development for Australian Catholic University.
In February 2016 she was diagnosed with metastatic breast cancer, which has spread to her bones and lungs.
It’s not her first encounter with terminal illness: originally diagnosed five years ago with breast cancer, she was cared for by her best friend and housemate Cath – only to become Cath’s carer when she was soon after diagnosed with lung cancer and died 14 months later.
Now Julie gets much loving care from her friend and former colleague, Robyn Horner, who is Associate Professor at the Institute for Religion and Critical Inquiry at the ACU, as well as from her beloved family. She also continues to care for others, including her elderly parents.
At the recent Australian Palliative Care Conference in Adelaide, Julie and Robyn spoke about their roles, about accessing good care, how health professionals sometimes see patterns more than people, and the risks for patients and carers where “the host becomes the hostage”.
They continued the conversation with Marie McInerney; here’s an edited transcript.
Marie McInerney: How did you come to be both a carer and one who is cared for?
Julie Morgan: I lived in Sydney for 16 years and shared a house with my best friend Cath. In 2012 I was diagnosed with breast cancer. Many years before that Cath had had ovarian cancer so she had a real sense of what was needed in looking after someone with cancer. For example, when I was on chemo she would often turn up at my doorway in the middle of night; when I was too sick to call out for her, she would somehow know. We put that knowing down to her having experienced much of that shadow side of treatment, particularly chemo. Chemo keeps you alive but it’s a very blunt instrument.
Towards the end of my treatment, we noticed she had a very bad cough. She worked for Mary MacKillop International so would often travel backwards and forwards to East Timor. One of the staff members up there had TB. She went away for tests and we were hoping it was TB but unfortunately it wasn’t, it was very significant primary lung cancer. Cath died after 14 months, aged only 49. She was pretty keen to get to 50 but she didn’t quite make it. Caring for her was an intense experience, partly because I was still recovering from my own treatment, but it really was a privilege, I wouldn’t trade it for a second.
I then moved back to Melbourne to be with family and friends. One morning I tripped over my little dog and fell quite heavily on my chest: I thought I might have broken my ribs. After a few months of not being able to fix the pain with my chiropractor, I went to my doctor to order a chest x-ray. She said that given my history she should also do a bone scan. She did and it lit up like a proverbial Christmas tree. I counted at least 16-17 different tumour sites on my spine and ribs, while the lung x-ray showed hundreds of tiny tumours.
Eighteen months on, I think I’m pretty lucky in that I’ve had longer than they thought I would. It is what it is. It’s not going to get better. The chemo has done as much as it can do. I have radiation on spots where I think it will help to ease the pain on the spine. Really they are just treating me palliatively now, and I’m happy with that. I have got very very good care at the Peter Mac (Peter MacCallum Cancer Centre) and Melbourne City Mission.
I’m surrounded by love and prayer and support and positive energy from all over the world, from Jewish friends in New York and Buddhist friends in Bangkok and people who don’t know what they are in Geneva! I feel I have a universe of support around me, but in particular I’m really touched by the support I have from Robyn, and my brother and sister.
Robyn Horner: I’ve known Julie for over 30 years. I shared a house with her in Melbourne before she moved to Sydney, and she’s the godmother of my (13 year old) daughter. She is very close to my two kids. I count it as a privilege to be her friend. She’s much more extroverted than I am and she’s taught me such a lot.
You can kind of imagine, then, how shocking it is for this to be happening, unfolding, but given that it is, I wouldn’t want to be anywhere else (than providing close support), so I, too, would describe it as a privilege to be in this moment in Julie’s life…
I struggle to be a carer. I’m not as intuitively observant as many others, I live in my head, so sometimes I won’t think of doing something till I’ve noticed someone else do it.
But there are other areas where I’m better. For example, I knew that the people from around the world who love Julie, and they are legion, would want to know what is happening, so I’ve set up an email distribution list of 100 or more people. It’s a lot of work for her to address all the texts and emails coming in from friends, so this is proving a really good way for people to keep up to date. I don’t necessarily go into the nitty gritty but I signal when there are changes or developments and that keeps them connected.
At one stage, I got them all to send photos of themselves with Julie, or just themselves, and another friend gave her one of those digital frames, so people she loves are constantly passing through in the frame. Sometimes I do very practical things, like shopping, or, as Julie does public things, part of my role is in supporting her to get there. (As well as her conference presentation, Julie has also been interviewed a number of times about her opposition to voluntary euthanasia.)
Marie McInerney: What makes for a good carer and good care?
Julie Morgan: It’s not what the carers do, it’s how they do it. It’s not always the practical things that are important to me, but the symbolic things that they will remember when I am gone. Confidence and trust I think are the important things. If they’re accompanying you to the doctor, you know that they’re advocating on your behalf. You’re confident that they know what you like, know when it’s time to change the sheets, and trustworthy about financial matters.
In terms of what I learnt as a carer and what I learnt in being cared for, sometimes I think it’s harder to be the carer, to know where the boundaries are, what you can do to help and where your helping starts to interfere with the autonomy of another person.
Robyn Horner: People at work know that I’m caring for Julie, and I have the luxury of their confidence that if I need to be here (with Julie), I can be here. That happened the other day. I spoke to Julie in the morning as I was on the freeway going to work and she wasn’t very well. So I turned right instead of left and came here. It meant that a whole lot of things that were unravelling in terms of her medication were dealt with as a result of an intuitive sense of where things were. But I couldn’t have done that or be in this role if I wasn’t in a job or with an organisation that allowed me flexibility.
Marie McInerney: You talked about the risk of the “host becoming the hostage” for people who rely on care: what do you mean?
Robyn Horner: The trope of the “host becoming the hostage”, words which have etymological links, comes from French philosopher Jacques Derrida’s reading of the idea of “radical hospitality” of Emmanuel Levinas, a French philosopher of Lithuanian Jewish ancestry who was a prisoner of war in World War Two. I was actually at Derrida’s lecture in Paris in 1996, part of a series of lectures on hospitality, where he spoke about this.
Derrida picked up this idea of radical hospitality, to ask: but what happens when someone comes to your house and you say ‘make yourself at home’ and they do? They stay for weeks or months, and in the end they take over, they’re running your house.
It became a very relevant reference for us. Julie is very well educated; she has had a great career, taking on high-level roles around the world (including as Regional Director of Franciscans International in the Asia Pacific and Deputy National Director of Caritas Australia). Yet here she is, feeling as though much of that is taken from her, the cancer doesn’t allow her to do that anymore, and other people are here in her house telling her what to do.
Julie Morgan: It comes across in different ways. I made the joke at the conference about how it prompts ‘competing pumpkin soups’ between friends. For example, when Cath was sick, people would ask what food could they bring to help. When she was going through radiation, her esophagus was badly burnt and she was vomiting most of every day so she could only eat certain things. A friend offered to cook something for Cath. I suggested a fairly bland soup because Cath had such difficulty eating. In spite of this, she insisted on making a lemon tart; once again, hosts became hostages.
Recently I had a visit from a palliative care nurse and we were having a really lovely conversation about politics. Then she suddenly switched and asked every nurse’s most important question: ‘Have your bowels opened yet today?’ I got suddenly thrown back into ‘you are just a patient’. They can forget that you’ve actually been a person all your life, not just a patient.
Marie McInerney: Given the difficulty of not wanting to reject good intentions while relying on carers, what’s your advice to carers on how not to become hostage-takers?
Julie Morgan: I think the critical skill of the carer is the capacity to listen, to deeply listen, and to allow the person to be themselves. Even when they’re sick, they’re still themselves, they don’t stop being themselves. For example, I don’t stop being a carer too. Even when I’m sick I still need to care, so let me care for other people in the way that I need to care for them.
Marie McInerney: You talked about often health practitioners see patterns, not patients – how does that manifest?
Julie Morgan: So many times I’ve reported symptoms to doctors and they have said ‘no, that doesn’t actually happen with your illness’, but I am still experiencing the symptoms! They want you to believe that all patients are different, and every hospital talks about patient-centred care, but really what they’re looking for are patterns of the disease, and not the person, so with every best intention, they can still very easily dismiss what you’re saying to them.
Robyn Horner: We are two people who are highly educated and have the confidence to engage with doctors, as professionals. I obviously have a lot of respect for what doctors know, and you’re in their hands, but our life experiences mean we can ask questions and raise issues. We often wonder, when we go into the Peter Mac, about what it’s like for others there, can they ask the same questions we do? If the doctor says a symptom can’t happen, do they just have to accept that?
I felt I was being a bit demanding this week when I rang the hospital about Julie’s medication, saying this isn’t right, this isn’t working, can you reassess? We ended up being treated very well. But if I hadn’t had the confidence to ask, what might have happened?
Marie McInerney: Around 70 per cent of Australians say they want to die at home (although less than 15 per cent do). But Julie, you’ve said you don’t want to. What’s your preferred place and why?
Julie Morgan: I don’t want to die at home because I don’t want to put pressure on family and friends to look after me when the professionals can do that. If I can stay at home for as long as I can, that would be great – it means I can keep my little dog Timmy beside me, and that’s really important. But I’m quite happy to die in a palliative care facility. I know there’s a push for us to die at home and I can see that would work for some people, but it’s not something I would choose for myself or my family and friends. I would rather my family and friends had energy to focus on loving me, talking with me and stroking my arm, rather than toileting and bathing me.
Cath wanted to die at home and we made as many arrangements as we could for that to happen. In the end that didn’t work out. We would often sit up at night because she found it hard to breathe lying down and one morning, after a very long night, she lost consciousness. When the ambulance came, the choice was made to send her to the local palliative care facility. My hope was that it was just to get things recalibrated and she’d be able to come home but in fact, three days later, she died there.
I think in the end it was probably the best decision, because she was from a large family…. Just managing (her care) with a house full of people would have been very hard. The palliative care facility was very good: they cleared a big room for us, her sister was able to stay over at night, and I think in the end it was a beautiful death. It wasn’t where she wanted it to be but it was probably how she wanted it to be: in the sense that all her family were there.
We were all there, able to stroke her arm, able to make jokes even though she couldn’t respond. I’d tell her who was phoning and texting … .she was surrounded by as much love as she could have been. A couple of us kept talking to her. I think hearing is one of the last things to go and I wanted her to keep hearing she was not alone, that she was not in the dark, that she was deeply loved.
After Cath died, no one rushed us out of the room; we were able to sit with her for a long time. The Pastoral Care people came around with a drinks trolley, and we all shared Cath’s favourite drink, which was a gin and tonic. I’d like to think my family and friends could have a gin and tonic with me as I go.
Bookmark this link to follow Marie McInerney’s coverage of the conference.