Dr Bruce Arroll interviewby Geraldine Johns
When the head of the department of general practice at Auckland university's School of Medicine became seriously ill, the experience provided huge insights into what patients go through.
Bruce Arroll is packing his bags for a trip to Canada, via the US. He’s not worried about the journey; it’s the arrival that’s causing him concern. His passport photo is the problem. It shows him with a full head of hair and a face full of beard. Arroll now has neither of those features.
His hirsute self is a thing of the past. He expects immigration officials may have a few questions about the discrepancies. “I’ll tell them I didn’t shave it off; I’m not a terrorist. I’ll have a letter explaining why.” There are other letters to Arroll’s name that add further intrigue to his circumstances. There’s MB ChB for his medical degree from the University of Auckland; the PhD for the doctorate in epidemiology that followed. Patients at his South Auckland medical practice call him “Dr”. As head of the department of general practice at the university’s School of Medicine, he is afforded the title of professor.
But six months ago he was reduced to just “Bruce”: one patient in a four-bed room in Auckland Hospital’s Ward 62 – the “cancer ward”. It was there, after being diagnosed with acute myeloid leukaemia, he had the chemotherapy that cost him his hair. Early this year, Arroll was enjoying his holidays with his wife and three children in Auckland. But a lump on his tongue and an ongoing sore throat had become more than a nagging complaint; he was having difficulty swallowing to the point he was gagging on food. No longer could he convince himself he hadn’t chewed properly or that he was simply imagining things. Arroll emailed a colleague – an ear, nose and throat surgeon – who told him to “pop around to the office and we’ll take a look”.
“He sticks this thing down my throat and says, ‘Ooh, there’s a lump back there’, then he refers me to a colleague who does head and neck cancer at Auckland Hospital who says ‘there’s definitely a lump there’.” But he couldn’t tell what it was. “He says, ‘You’ll have to have a biopsy.’”
In the past, Arroll had visited Auckland Hospital as a teacher or practitioner. Now, he was going to be a patient and learn first-hand what it’s like for patients going through the diagnosis and treatment process.
For example, there’s what he calls the “toxic uncertainty” – the agonising period of anxious wait between the conferring of a cancer diagnosis and prognosis. The delay – some weeks in his case – was first because the tumour was being tested for abnormalities, then because the physicians needed to decide on the treatment.
“You start catastrophising and going into overdrive. I know, as a doctor, that’s not a good state for people to be in.” The experience gave him considerable insight. “As GPs, we tend to refer people on for investigation, then we get them back after the treatment’s been started. So it was quite interesting to be in this uncertainty stage. It reminded me that uncertainty is not a good state for the human mind.”
Then there was the support of other patients going through a similar experience. It’s reasonable to assume most people would prefer a single room, away from the noise and intrusion of others. Arroll thought so, too. But post-treatment, he sees both social and educational advantages in sharing rooms.
“I always thought it would be very strange to be in a cancer ward. You’d all be sitting there not wanting to talk to each other, pretending you didn’t have cancer. It’s quite the opposite. There’s this incredible feeling of, ‘What are your blood tests? How’s it going?’ It’s the opposite to what I would imagine, or the public would imagine. I was very impressed at how open everybody was.”
The first step in Arroll’s diagnosis process was a tongue biopsy. Then – after those results suggested a blood cancer – a bone-marrow biopsy. But before that came a CT scan, which provided brief relief when it came back normal. The results of the bone-marrow biopsy were not good: what was thought to be a lymphoma – a cancer of the lymph glands – was leukaemia. What followed offered him an education for which neither medical school nor all the reading in the world could have prepared him.
He learnt it’s better to confront the enemy than cower from it. With his wife and daughter at his side, Arroll took strength from the initial consultation with his haematologist. The specialist said the lump was deemed to be a localised form. “So that was good news.” Before that, he says, he was wondering whether he’d be dead in a month or living to 90. Despite the gravity of the situation, getting a diagnosis and learning about the treatment gave the family tremendous relief, says Arroll.
Haematology not being his specialty, he was unfamiliar with leukaemia treatment. But even if it had been his practice, there were no cases in the literature, he says, of such a lump developing in the tongue and not being connected to a bone-marrow cancer. Previously, Arroll had occasionally considered what he would do if given a cancer diagnosis. He thought he would look up the literature and gauge the effectiveness of chemotherapy before deciding whether to accept or reject it.
But come the day, he immediately agreed to the treatment – in part thanks to a patient of his who had initially been diagnosed with bowel cancer but not offered chemotherapy. “And then she got a metastatic lesion and [as a result] she got the chemotherapy. She was so pleased with the results, I said to her in the office, ‘Joy, you are the inspiration to me. Just bring on the chemotherapy.’
When it was his turn, he was happy to say, “‘Okay, whatever you say, I’ll do.’ So you can choose your attitude. And I chose to bring on the chemotherapy.” What does he mean by that? “I was looking forward to it, if you like. I wasn’t going to be frightened by it. And you realise this is saving your life.”
For Arroll, being admitted to Ward 62 was to surrender. It was the first time he had been a patient for anything major. He was to be given standard chemotherapy in case there was a hidden problem in his bone marrow. This entailed three rounds of chemotherapy, requiring 10 days in hospital for the first session, seven for the second and five for the third. Then there were the unforeseen eventualities: he would be further hospitalised three times for infections that resulted from the treatment. As a result, he would receive 10 blood transfusions, 10 platelet transfusions (to ensure the blood clotted) and three courses of intravenous antibiotics.
“I walked into the ward and my immediate feeling was one of ‘I’m in the same boat as these people’. I just suddenly felt, ‘We’re all up the creek a little bit; let’s get on with it.’ [There was] an immediate camaraderie.” Four men in a room; comfort in the heart of strangers. They all wore the same badge: a Groshong line, which is inserted into one of the two main veins to the heart and exits via the skin on the chest wall. It has two ports for administering fluids, taking blood and giving the poisonous medication designed, perversely, to save their lives.
One room-mate, an 18-year-old also with myeloid leukaemia, had a strong influence on Arroll. Because he was two courses ahead, the teenager could advise on and demonstrate what was to come. This included putting steroid drops into his eyes, which Arroll would learn were to prevent the formation of ulcers.
“I was a bit shocked when I saw him do that, but when it came to my turn, I was already educated … I think he actually enjoyed mentoring me; that was quite a powerful experience for him.” Powerful for the older student, too. “Part of me was thinking, ‘Gosh, this is a bit rough – he’s 18 and I’m 58. I’ve had 40 more years.”
It was contrary to what he had been taught and all he had practised. Instead of allowing time for the perusal of options and negotiation with patients, as was normally the case, Arroll was happy to yield to the treatment. “On the one hand, they’re doing these terrible things to you; on the other you’d probably be dead [if they didn’t]. You have to put yourself in the hands of the people who are experts.” There was the numbers thing, too. Arroll was given a 90% chance of survival with three rounds of chemotherapy. Without treatment, the rate was much lower. During his treatment, an unwelcome visitor returned in the form of the state of toxic uncertainty he had encountered earlier. It came after he contracted an infection, and despite three days of intravenous antibiotics, his fever did not abate.
“They raised the possibility of a fungal infection in my lung. They did a chest x-ray and that was okay, and they said, ‘Now we’re going to have to do a helical CT scan of your lung’ – but it was a Sunday and they couldn’t do it until Monday. “Again, it was this uncertainty stuff. I’m aware this is an issue in hospital when you don’t know what’s going to happen. I’m sitting there thinking, ‘Oh God, I’m going to have to wait 24 hours and I’ve got a fungal infection and it could get away on me.’
“Then they said, ‘If you have a fungal infection, we have to do a bronchoscopy to look at it.’ And I just thought, ‘Oh my God, how many more things can happen?’” That was probably the lowest period, he says, as he faced the realisation he was unable to plan his life, that he needed a transfusion and that he wouldn’t be going back to work any time soon.
“So there’s a bit of uncertainty – around waiting for the x-ray, not knowing when that was going to be and waiting for the treatment information. They would be the two big things I would have internalised and I think I’d be more conscious of as a doctor. At one level I’m aware of that – but the personal experience heightens it a bit.”
If he was a benign advocate of the public health system before he went in, he was an earnest devotee by the time he left – both in terms of the distribution of the health dollar and the level of care he received. “They’re giving you pretty nasty stuff. You wouldn’t want to be in a place where they make mistakes and they say [of a staff member], ‘Oh no, she’s no good.’”
He has confidence, too, in the health spend. “[I was] hugely impressed with the public health system – I’ve never not been – but as a consumer … I kept thinking, ‘Wow! Do we ever get value from taxpayers’ money.’ This is such an amazing system – that you can go into the system and it’s all paid for. If I was in America, that could have bankrupted me. Every unit of platelets is $800 and I got 10 units. You’re getting this $800 transfusion over about 20 minutes.”
He had a lot of time during treatments. So, what did he do? First, he got his emails down to zero. Then he wrote half a dozen papers for various medical journals. The one for the British Journal of General Practice was “An insider’s guide to acute myeloid leukaemia treatment”, which focused on chemotherapy and living with its consequences.
“One of the consultants describes the treatment process as being like an iatrogenic infectious disease,” he writes. “In other words, they cause your bone marrow to fail, then keep you alive with blood and platelet transfusions and intravenous antibiotics until your bone marrow recovers. In the process the chemotherapy drugs kill any cancer cells in your bone marrow. You come to realise your white count is all that comes between you and the bacteria of the world that can kill you in a few days without antibiotics.”
Arroll is now back at work – and back at the gym. Before his illness, he worked out every day; he believes his fitness helped keep his bone marrow clear of cancer. Now he does pilates once a week as a part of his post-treatment regime. He’s dividing time between clinical commitments and academic pursuits, but he’s looking to explore a less-pressured life, he says.
He will need to have blood tests for months yet, but after that only if he gets very tired. He considers himself cured, but the uncertainty remains. “If a lump turns up, I’ll have to cross that bridge when I come to it.” The price of knowledge: “I’ll [now] be much more sensitive to my patients when I send them off to places. I’ve often joked that medical students should start training at 70 – when they’ve had a lot of life experience. I see this as a learning experience. And in some ways I’m grateful to have had it, in a funny sort of way.”
See September 10 Health column for Dr Arroll’s views on antibiotics and colds.
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