As published in July/August BayBuzz magazine
In November last year, freshly 40, I was diagnosed with bowel cancer.
I spent the first 12 days of 2020 on the fourth floor of Hawke’s Bay Memorial Hospital recovering from major surgery – a laparoscopic anterior resection, to be precise, removing 38cm of colon, a third of my rectum, and a tumour the size of a nectarine.
Australia was burning, and some days all I could see of the sky from my hospital bed was a grainy haze, and later smoke from the fires in Tangoio.
In those long, dazed evenings I read Paul Kingsnorth’s Savage Gods, his midlife crisis of words (it felt fitting), while by day, step-by-step I reclaimed the essential functions of my body. It was not a gentle experience. But on the seventh day, wheeled outside for the first time, I held my face to the sun and the sun felt soft, miraculous.
Bowel cancer is the second biggest cancer killer in New Zealand (more than prostate and breast combined), and internationally our rates are high. But it’s not one we like to talk, or even think about; it’s a squeamish, not-exactly-dinner-table topic. Over 90% of all cases here are diagnosed in folks over 50, mostly Pākehā, mostly male (though Māori and Pasifika have worse outcomes). But New Zealand women have the highest female incidence of colorectal cancer (CRC) in the world, and the number of young-onset patients (under 50) is rising.
No one really knows why.
Lifestyle (obesity, red meat consumption, alcohol) might heighten the risk, but it’s not a conclusive answer, and at the micro-level of a person, this person, it’s no answer at all.
I’m not a candidate for cancer. All my life I’ve eaten the rainbow, wholefoods are a staple, I don’t smoke, hardly drink, gave up meat at 15. In medical terms (as I like to remind my sceptical children) I’m “young, fit and slim”. But it turns out health and self-responsibility is no insurance.
Part of cancer’s shock is the realisation that it’s not something, as an individual, you can quite control for. The chance factor of being human in this time, this world, means a 50/50 likelihood (by 2050) of cancer in your lifetime, but like death and corona, statistical probability never feels like real risk.
Possible links to antibiotics in the gut microbiome have been raised, to nitrate levels in our groundwater, to something (what?) we’ve been exposed to when young which flipped the switch – Prof David Skeggs led a study in England, that found Kiwis living for years in the UK were still substantially more likely than Brits to get bowel cancer.
There’re genetic factors too (with heritable cancer syndromes likes Lynch and Familial Adenomatous Polyposis a determinant in 6% of CRC cases). As it happens, I’m an accomplished grower of colonic polyps (which can lead to malignancy). “You can thank your Scottish genes,” the surgeon said. I thanked them with whisky.
Pathways to diagnosis and treatment
The national bowel screening programme (rolled out in Hawke’s Bay in 2018, and open to those aged 60-74) was never going to capture a case like me, one of 350 Kiwis under 50 who are diagnosed each year. For that I relied on the traditional primary health pathway.
When I saw my GP in October during one of the odd exhaustion collapses I’d have where I couldn’t stop vomiting – my kids called it ‘mum’s stress sickness’ – I listed a raft of other seemingly unrelated symptoms, none of which I would have booked an appointment for in isolation and all of which I had rationalised.
I was lucky in my GP, she was thorough and astute, my low iron levels alone enough to cause alarm – “it doesn’t make sense for a long-term vegetarian to have a sudden, unexplained drop,” she said. Though she thought it “highly unlikely”, given my age and lifestyle and lack of family history, she referred me to a gastroenterologist to rule out bowel cancer. Privately I felt I must have overly dramatized things. But the specialist (“to avoid delays”) put me straight on the waiting list for a colonoscopy (I received a letter promptly in the mail).
I was lucky because this trajectory, which was textbook effective in my case, isn’t a given in NZ.
I’m part of an online CRC support group and almost invariably women such as myself tell of circling through repeat GP visits over months, even years, their symptoms initially downplayed or misdiagnosed, or their GP’s referral for a colonoscopy denied, or simply not prioritised for first specialist assessments. Too young, too healthy, is the erroneous catch-cry.
Bowel cancer is a disease that when picked up early, can be successfully treated. But it’s often symptomless, or by the time symptoms are observed, then acted on, already advanced. In NZ, 24% of all CRC cases are metastatic (late-stage) at diagnosis. In fact, more than a quarter are discovered in the emergency department (and Hawke’s Bay’s no exception), contributing to poorer outcomes, with high rates globally of emergency (as opposed to planned) surgery, particularly for Māori/Pasifika, for women, and for people younger than 50 (27%) or over 75.
Survival rates are worse in NZ than in countries like Australia and Canada, an international comparative study recently found, and it’s early detection (i.e. screenings), early access to diagnostic tests and timely access to effective treatment that make all the difference, says Cancer Society’s medical director Chris Jackson.
When I rang the DHB to ask about timing, I was told to expect at least a 13-week wait (due to demand and a dearth of trained staff) and cheerily assured, “Don’t worry, these cancers are slow-growing”.
For the first time I felt worried.
Going back to the GP to make an appointment, the receptionist gave counsel: “You have to be the squeaky wheel. Pick a day and ring them every week, it works.” Instead I sought advice from medical friends and relations. I took a holiday and chilled, and when I returned, my symptoms worse and clearly wrong, I borrowed money and booked myself a private colonoscopy for the following week at a clinic in Auckland (the $3,000 fee was half the quote from Royston).
That it was cancer was obvious: a black, fungating malignancy on screen, in contrast the clean pink of the ilium. I was handed the horror report (and a sandwich), while the clinician stressed urgency. It was a long, quiet drive home.
Re-entry back to public treatment took a bit of getting stroppy. The GP who’d initially seen me was now on leave, and things (like the clinician’s phone call and letter from Auckland) got lost in the PHO’s records; the GP I finally saw for the urgent referral the DHB was waiting on was brand-new to the practice and the electronic portal.
But once I had my foot in the door of the hospital’s colorectal department, I was met by a team that exuded pragmatic, unfazed assurance, ‘we’ve got this’. And I believed them. There was never any doubt I was in good hands, the care throughout excellent, professional, compassionate.
In the swath of health reports in recent years, that’s never the question. It’s the resourcing, the workforce shortages, the systemic inequities and structural deficiencies that jam those doors. An overburdened system can’t deliver to all.
It didn’t take coronavirus for me to realise the value of our public health system, and that’s its functioning is the difference between life and death. Or that its workforce are incredible, hardworking human beings. In my case, it served me, and ultimately well; but while I’m grateful, I know my fortune is privileged.
I had, first of all, my otherwise good health (no other conditions to confuse diagnosis or complicate my treatment). I had family and friends in the medical profession I could call on for advice, for support, every step of the way. I understood and could comply with the process. I knew how to advocate for myself in a language that could be heard, and was able to navigate the system, from public to private and back to public, which short-circuited the wait-time.
Left on the public waiting list, as the coronavirus began to shut borders in March it’s quite possible, I’ve been told, that I would have either still been waiting for initial diagnostics or turning up at ED with an obstructed bowel.
“By getting that colonoscopy,” the theatre nurse said just before I went under, “you saved your own life.”
When the country went into lockdown, colonoscopy procedures stopped. So too the national bowel screening programme. The endoscopy suite in the hospital was reconfigured as a temporary ICU, as part of its Covid-hospital-within-the-hospital adaptation.
While Royston halted its elective surgeries, it remained open as back-up assistance for the DHB’s urgent cases – “They saw us as the ‘clean’ site,” explains GM Denise Primrose, in the event of an influx of Covid patients. Breast and bowel cancers were given priority, but while urgent treatment continued in Hawke’s Bay and around the country, there were fewer operations, scans and diagnostic tests.
The Cancer Society estimates the three-month pause may cost 400 deaths.
For not only is there now a backlog in diagnostic services, people haven’t been seeing their doctors. At Alert Level 4, GP consultations dropped by 50-80%, while ED presentations also halved, and although things are picking up it’s still slow. As Primrose explains, because the pattern of referrals from GPs reduced to a trickle, there was a slowing down of specialist assessments too.
Hawke’s Bay DHB is “deep” in its post-Covid recovery, with the surgical wait list (which was already long before the pandemic), a key focus. The DHB says that “it’s actively working to address the backlog with a range of providers.” And hopes to be back to pre-Covid capacity (some 375 elective surgeries a month) by September.
The Government’s one-off $282 million nation-wide investment to fund the catch-up (not only surgeries but procedures, scans and specialist appointments) should go some way towards this.
The endoscopy suite has reverted (for now) to its original purpose, and colonoscopies and screenings are back up and running, though the hospital will have to stay nimble and adaptive in the event of another Covid-outbreak.
For more deeper level resourcing, the DHB is working on its business case for refurbishing the hospital’s radiology and surgical services. While across the road on Canning St, work has started on building a new private-owned elective-surgery facility to help meet burgeoning demand, with the aim of increasing the number of elective surgeries in the region by 5,000 a year.
In December as I was meeting with the hospital’s colorectal team to plan a course of action for my treatment, the government launched a dedicated Cancer Control Agency (budgeted to receive $7.7 million annually for the next four years) to oversee its comprehensive Cancer Action Plan, and ensure consistent, equitable, modern and timely cancer care across the country.
In Hawke’s Bay one of the first tangible gains will be an onsite radiation machine (at present patients requiring radiotherapy have to travel to Palmerston North).
The 10-year plan (a follow-on from the Cancer Control Strategy 2003), while outlining such aims as addressing workforce shortages, research, public education programmes and better access to diagnostic services, is specifically focused on improving outcomes for Māori and Pacific people, for those in rural and highly deprived areas, and for those with mental illness and disabilities – these populations “currently have worse cancer outcomes than other New Zealanders and this is unfair,” says Dr Ashley Bloomfield in his preface.
These are also the priority groups identified in the government’s recent-released Health and Disability Review, which paints a fairly dire picture of a fragmented, shambolic, inequitable health system (“a confusing monolith” says RNZ’s Rowan Quinn), while offering a suite of recommendations for an overhaul.
The overarching vision: to generate more diverse, representative and effective governance at the top through structural changes, while emphasising a greater sharing of services across the board, with a targeted, bottom-up approach to healthcare and a shift in all areas from treatment to wellbeing (or prevention) as goal.
The proposed reforms are controversial, with many saying they don’t go far enough or address key concerns, although it’s generally seen as a step in the right direction. But with the coronavirus only sharpening awareness of our health system vulnerabilities, there’s appetite for that debate and for change. And there’s been a seismic increase in (overdue) government funding.
Highlighted through the pandemic has been the important role of public health (that “fuzzy linguistic” term for health policy and practice that address a population, rather than the individual), an area that has been undervalued and underfunded for years. It’s also exposed the instability of primary health funding (predicated on a private business model) – GPs have faced a significant drop in revenue and are struggling not only with basic overheads but with the radical overnight transformation in their delivery of care on the frontline; they feel they’ve been effectively ignored by the government.
These two areas – a public health focus and primary care funding – are inadequately addressed in the review (completed before the country went into lockdown), and will no doubt, be on the table for discussion as we begin to take stock of our Covid-altered world.
Bowel cancer is a health crisis of sorts that touches on every aspect of our healthcare system. So, what resourcing, systemic reform and rebuild happens following this pandemic may be charted, in a sense, through how we approach this one example of an all-too common disease.
Bowel cancer is both acute (urgent care) and chronic (living with incurable disease, for some), traversing the spectrum of need, from prevention to end-of-life care.
Like coronavirus or clean drinking water, it’s a public, or population health issue, which means it’s also about environment, society, our shared world and collective actions – the health determinants that sit outside the health system.
But, equally, crucially, it’s an issue of personal access to medical services (from primary healthcare, like GP visits, to diagnostic testing and the raft of specialist cancer treatments), and the complex integration of multiple disciplines, as well as where they meet at the intersection of public and private care.
In the end, the impacts and attainments of our health system’s manifest failures and successes will play out, viscerally, within our bodies. And no one is immune.
Don’t Sit On Your Symptoms
New Zealand has one of the highest incidences of bowel cancer in the world. Each year about 3,000 people are diagnosed with the disease and more than 1,200 die. In Hawke’s Bay it’s our most common cancer, with around 150 people diagnosed a year.
Being aware of the symptoms is the first step you can take to prevent bowel cancer. Symptoms may come and go so don’t wait to see your GP if you have any of these concerns, no matter what age you are. They may include:
- Blood in stools (often black) or from the rectum (bright red)
- Change in bowel motions over several weeks
- Persistent or periodic severe abdominal pain
- A lump or mass in the abdomen
- Tiredness and/or loss of weight for no obvious reason
For more information, visit the Bowel Cancer NZ website: bowelcancernz.org.nz
Photo credit: Florence Charvin