Cancer is increasingly survivable – but it shouldn’t depend on your ability to ‘wrangle’ the health system
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One in three of us will develop cancer at some point in our lives. But survival rates have improved to the point that two-thirds of those diagnosed live more than five years.
This extraordinary shift over the past few decades introduces new challenges. A large and growing proportion of people diagnosed with cancer are living with it, rather than dying of it.
In our recently published research we examined the cancer experiences of 81 New Zealanders (23 Māori and 58 non-Māori).
We found survivorship not only entailed managing the disease, but also “wrangling” a complex health system.
Surviving disease or surviving the system
Our research focused on those who had lived longer than expected (four to 32 years since first diagnosis) with a life-limiting or terminal diagnosis of cancer.
Common to many survivors’ stories was the effort it took to wrangle the system or find others to advocate on their behalf, even to get a formal diagnosis and treatment.
By wrangling we refer to the practices required to traverse complex and sometimes unwelcoming systems. This is an often unnoticed but very real struggle that comes on top of managing the disease itself.
The common focus of the healthcare system is on symptoms, side effects of treatment and other biological aspects of cancer. But formal and informal care often falls by the wayside, despite being key to people’s everyday experiences.
The inequities of cancer survivorship are well known. Analyses show postcodes and socioeconomic status play a strong role in the prevalence of cancer and survival.
Less well known, but illustrated in our research, is that survival is also linked to people’s capacity to manage the entire healthcare system. That includes accessing a diagnosis or treatment, or identifying and accessing alternative treatments.
Survivorship is strongly related to material resources, social connections, and understandings of how the health system works and what is available. For instance, one participant who was contemplating travelling overseas to get surgery not available in New Zealand said:
We don’t trust the public system. So thankfully we had private health insurance […] But if we went overseas, health insurance only paid out to $30,000 and I think the surgery was going to be a couple of hundred thousand. I remember Dad saying and crying and just being like, I’ll sell my business […] we’ll all put in money. It was really amazing.
Assets of survivorship
In New Zealand, the government agency Pharmac determines which medications are subsidised. Yet many participants were advised by oncologists or others to “find ways” of taking costly, unsubsidised medicines.
This often meant finding tens of thousands of dollars with no guarantees. Some had the means, but for others it meant drawing on family savings, retirement funds or extending mortgages. This disproportionately favours those with access to assets and influences who survives.
But access to economic capital is only one advantage. People also have cultural resources – often described as cultural capital.
In one case, a participant realised a drug company was likely to apply to have a medicine approved. They asked their private oncologist to lobby on their behalf to obtain the drug through a compassionate access scheme, without having to pay for it.
Others gained community support through fundraising from clubs they belonged to. But some worried about where they would find the money, or did not want to burden their community.
I had my doctor friend and some others that wanted to do some public fundraising. But at the time I said, “Look, most of the people that will be contributing are people from my community who are poor already, so I’m not going to do that option”.
Accessing alternative therapies, almost exclusively self-funded, was another layer of inequity. Some felt forced to negotiate the black market to access substances such as marijuana to treat their cancer or alleviate the side effects of orthodox cancer treatment.
Cultural capital is not a replacement for access to assets, however. Māori survivorship was greatly assisted by accessing cultural resources, but often limited by lack of material assets.
Persistence pays
The last thing we need when faced with the possibility of cancer is to have to push for formal diagnosis and care. Yet this was a common experience.
One participant was told nothing could be found to explain their abdominal pain – only to find later they had pancreatic cancer. Another was told their concerns about breathing problems were a result of anxiety related to a prior mental health history, only to learn later their earlier breast cancer had spread to their lungs.
Persistence is another layer of wrangling and it often causes distress.
Once a diagnosis was given, for many people the public health system kicked in and delivered appropriate treatment. However, experiences were patchy and variable across New Zealand.
Issues included proximity to hospitals, varying degrees of specialisation available, and the requirement of extensive periods away from home and whānau. This reflects an ongoing unevenness and lack of fairness in the current system.
When facing a terminal or life-limiting diagnosis, the capacity to wrangle the system makes a difference. We shouldn’t have to wrangle, but facing this reality is an important first step.
We must ensure it doesn’t become a continuing form of inequity, whereby people with access to material resources and social and cultural connections can survive longer.
Kevin Dew, Professor of Sociology, Te Herenga Waka — Victoria University of Wellington; Alex Broom, Professor of Sociology & Director, Sydney Centre for Healthy Societies, University of Sydney; Chris Cunningham, Professor of Maori & Public Health, Massey University; Elizabeth Dennett, Associate Professor in Surgery, University of Otago; Kerry Chamberlain, Professor of Social and Health Psychology, Massey University, and Richard Egan, Associate Professor in Health Promotion, University of Otago
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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Families including someone with mental illness can experience deep despair. They need support
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In the aftermath of the tragic Bondi knife attack, Joel Cauchi’s parents have spoken about their son’s long history of mental illness, having been diagnosed with schizophrenia at age 17. They said they were “devastated and horrified” by their son’s actions. “To you he’s a monster,” said his father. “But to me he was a very sick boy.”
Globally, one out of every eight people report a mental illness. In Australia, one in five people experience a mental illness in their lifetime.
Mental illness and distress affects not only the person living with the condition, but family members and communities. As the prevalence of mental health problems grows, the flow-on effect to family members, including caregivers, and the impact on families as a unit, is also rising.
While every family is different, the words of the Cauchis draw attention to how families can experience distress, stress, fear, powerlessness, and still love, despite the challenges and trauma. How can they help a loved one? And who can they turn to for support?
The role of caregivers
Informal caregivers help others within the context of an existing relationship, such as a family member. The care they provide goes beyond the usual expectations or demands of such relationships.
Around 2.7 million Australians provide informal care. For almost a third of these the person’s primary medical diagnosis is psychological or psychiatric.
It has long been acknowledged that those supporting a family member with ongoing mental illness need support themselves.
In the 1980s, interest grew in caregiving dynamics within families of people grappling with mental health issues. Subsequent research recognised chronic health conditions not only affect the quality of life and wellbeing of the people experiencing them, but also impose burdens that reverberate within relationships, caregiving roles, and family dynamics over time.
Past studies have shown families of those diagnosed with chronic mental illness are increasingly forced to manage their own depression, experience elevated levels of emotional stress, negative states of mind and decreased overall mental health.
Conditions such as depression, anxiety disorders, bipolar disorder, and schizophrenia can severely impact daily functioning, relationships, and overall quality of life. Living with mental illness is often accompanied by a myriad of challenges. From stigma and discrimination to difficulty accessing adequate health care and support services. Patients and their families navigate a complex and often isolating journey.
The family is a system
The concept of family health acknowledges the physical and psychological wellbeing of a person is significantly affected by the family.
Amid these challenges, family support emerges as a beacon of hope. Research consistently demonstrates strong familial relationships and support systems play a pivotal role in mitigating the adverse effects of mental illness. Families provide emotional support, practical assistance, and a sense of belonging that are vital for people struggling with mental illness.
My recent research highlights the profound impact of mental illness on family dynamics, emphasising the resilience and endurance shown by participants. Families struggling with mental illness often experience heightened emotional fluctuations, with extreme highs and lows. The enduring nature of family caregiving entails both stress and adaptation over an extended period. Stress associated with caregiving and the demands on personal resources and coping mechanisms builds and builds.
Yet families I’ve interviewed find ways to live “a good life”. They prepare for the peaks and troughs, and show endurance and persistence. They make space for mental illness in their daily lives, describing how it spurs adaptation, acceptance and inner strength within the family unit.
When treating a person with mental illness, health practitioners need to consider the entire family’s needs and engage with family members. By fostering open and early dialogue and providing comprehensive support, health-care professionals can empower families to navigate the complexities of mental illness while fostering resilience and hope for the future. Family members express stories of an inner struggle, isolation and exhaustion.
Family bonds can be a cornerstone of wellbeing. Gorodenkoff/Shutterstock Shifting the focus
There is a pressing need for a shift in research priorities, from illness-centered perspectives to a strengths-based focus when considering families “managing” mental illness.
There is transformative potential in harnessing strengths to respond to challenges posed by mental illnesses, while also supporting family members.
For people facing mental health challenges, having loved ones who listen without judgement and offer empathy can alleviate feelings of despair. Beyond emotional support, families often serve as crucial caregivers, assisting with daily tasks, medication management and navigating the health-care system.
As the Cauchi family so painfully articulated, providing support for a family member with mental illness is intensely challenging. Research shows caregiver burnout, financial strain and strained relationships are common.
Health-care professionals should prioritise support for family members at an early stage. In Australia, there are various support options available for families living with mental illness. Carer Gateway provides information, support and access to services. Headspace offers mental health services and supports to young people and their families.
Beyond these national services, GPs, nurses, nurse practitioners and local community health centres are key to early conversations. Mental health clinics and hospitals often target family involvement in treatment plans.
While Australia has made strides in recognising the importance of family support, challenges persist. Access to services can vary based on geographic location and demand, leaving some families under-served or facing long wait times. And the level of funding and resources allocated to family-oriented mental health support often does not align with the demand or complexity of need.
In the realm of mental illness, family support serves as a lifeline for people navigating the complexities of their conditions.
If this article has raised issues for you, or if you’re concerned about someone you know, call Lifeline on 13 11 14.
Amanda Cole, Lead, Mental Health, Edith Cowan University
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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Radical Remission – by Dr. Kelly Turner
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First, what this is not:an autobiographical account of the “I beat cancer and you can too” pep-talk style.
What it is: a very readable pop-science book based on the author’s own PhD research into radical remission.
She knew that a very small percentage of people experience spontaneous radical remission (or quasi-spontaneous, if the remission is attributed to lifestyle changes, and/or some alternative therapy), but a small percentage of people means a large number worldwide, so she travelled the world studying over 1,000 cases of people with late-stage cancer who had either not gone for conventional anticancer drugs, or had and then stopped, and lived to tell the tale.
While she doesn’t advocate for any particular alternative therapy, she does report on what things came to her attention. She does advocate for some lifestyle changes.
Perhaps the biggest value this book offers is in its promised “9 key factors that can make a real difference”, which are essentially her conclusions from her PhD dissertation.
There isn’t room to talk about them here in a way that wouldn’t be misleading/unhelpful for a paucity of space, so perhaps we’ll do a main feature one of these days.
Bottom line: if you have (or a loved one has) cancer, this is an incredibly sensible book to read. If you don’t, then it’s an interesting and thought-provoking book to read.
Click here to check out Radical Remission, and learn about the factors at hand!
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Lemon vs Lime – Which is Healthier?
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Our Verdict
When comparing lemons to limes, we picked the lemons.
Why?
This one’s simple today. They’re both comparable fruits in most ways, and their macro profiles are almost identical. When it comes to vitamins, however, they stand apart a little.
Both are most well-known for their vitamin C content, but lemons contain about 2x the vitamin C of limes.
In other vitamins, they’re not too far apart. Technically limes have 2x the vitamin A, but this doesn’t count for much because it’s a case of “two times almost nothing is still almost nothing”.
In the category of minerals, neither fruit is a very good source of most minerals, and the minerals they do have, are mostly more or less the same.
Both are acidic, and this can have blood sugar benefits in both cases (and, if not careful, damage tooth enamel in both cases). Nothing to set either apart from the other here.
So, it comes down to the vitamin C! In which category, lemons take the prize with their higher content.
Want to learn more?
You might like to read:
10 Ways To Balance Blood Sugars ← where it talks about the use of vinegar here, it’s about the acidity, so lemon juice or lime juice is an option too!
Take care!
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Almond Butter vs Cashew Butter – Which is Healthier?
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Our Verdict
When comparing almond butter to cashew butter, we picked the almond.
Why?
They’re both good! But, our inherent pro-almond bias notwithstanding, the almond butter does have a slightly better spread of nutrients.
In terms of macros, almond butter has more protein while cashew butter has more carbs, and of their fats, they’re broadly healthy in both cases, but almond butter does have less saturated fat.
In the category of vitamins, both are good sources of vitamin E, but almond butter has about 4x more. The rest of the vitamins they both contain aren’t too dissimilar, aside from some different weightings of various different B-vitamins, that pretty much balance out across the two nut butters. The only noteworthy point in cashew butter’s favor here is that it is a good source of vitamin K, which almond butter doesn’t have.
When it comes to minerals, both are good sources of lots of minerals, but most significantly, almond butter has a lot more calcium and quite a bit more potassium. In contrast, cashew butter has more selenium.
In short, they’re both great, but almond butter has more relative points in its favor than cashew butter.
Here are the two we depicted today, by the way, in case you’d like to try them:
Want to learn more?
You might like to read:
Why You Should Diversify Your Nuts
Take care!
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Superfood Baked Apples
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Superfoods, and super-tasty. This is a healthy twist on a classic; your blood sugars will thank you for choosing this tasty sweet delight. It’s also packed with nutrients!
You will need
- 2 large firm baking apples, cored but not peeled
- 1/2 cup chopped walnuts
- 3 tbsp goji berries, rehydrated (soak them in warm water for 10–15minutes and drain)
- 1 tbsp honey, or maple syrup, per your preference (this writer is also a fan of aged balsamic vinegar for its strong flavor and much milder sweetness. If you don’t like things to be too sweet, this is the option for you)
- 2 tsp ground sweet cinnamon
- 1 tsp ground ginger
Method
(we suggest you read everything at least once before doing anything)
1) Preheat the oven to 180℃ / 350℉ / gas mark 4
2) Mix the chopped walnuts with the goji berries and the honey (or whatever you used instead of the honey) as well as the sweet cinnamon and the ginger.
3) Place the apples in shallow baking dish, and use the mixture you just made to stuff their holes.
4) Add 1/2 cup water to the dish, around the apples. Cover gently with foil, and bake until soft.
Tip: check them every 20 minutes; they may be done in 40 or it may take 60; in honesty it depends on your oven. If unsure, cook them for longer at a lower temperature.
5) Serve warm.
Enjoy!
Want to learn more?
For those interested in some of the science of what we have going on today:
- From Apples to Bees, and High-Fructose C’s
- Why You Should Diversify Your Nuts!
- Goji Berries: Which Benefits Do They Really Have?
- The Sugary Food That Lowers Blood Sugars
- Honey vs Maple Syrup – Which is Healthier?
- A Tale Of Two Cinnamons ← this is important, about why we chose the sweet cinnamon
- Ginger Does A Lot More Than You Think
Take care!
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Super-Nutritious Shchi
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Today we have a recipe we’ve mentioned before, but now we have standalone recipe pages for recipes, so here we go. The dish of the day is shchi—which is Russian cabbage soup, which sounds terrible, and looks as bad as it sounds. But it tastes delicious, is an incredible comfort food, and is famous (in Russia, at least) for being something one can eat for many days in a row without getting sick of it.
It’s also got an amazing nutritional profile, with vitamins A, B, C, D, as well as lots of calcium, magnesium, and iron (amongst other minerals), and a healthy blend of carbohydrates, proteins, and fats, plus an array of anti-inflammatory phytochemicals, and of course, water.
You will need
- 1 large white cabbage, shredded
- 1 cup red lentils
- ½ lb tomatoes, cut into eighths (as in: halve them, halve the halves, and halve the quarters)
- ½ lb mushrooms sliced (or halved, if they are baby button mushrooms)
- 1 large onion, chopped finely
- 1 tbsp rosemary, chopped finely
- 1 tbsp thyme, chopped finely
- 1 tbsp black pepper, coarse ground
- 1 tsp cumin, ground
- 1 tsp yeast extract
- 1 tsp MSG, or 2 tsp low-sodium salt
- A little parsley for garnishing
- A little fat for cooking; this one’s a tricky and personal decision. Butter is traditional, but would make this recipe impossible to cook without going over the recommended limit for saturated fat. Avocado oil is healthy, relatively neutral in taste, and has a high smoke point for caramelizing the onions. Extra virgin olive oil is also a healthy choice, but not as neutral in flavor and does have a lower smoke point. Coconut oil has far too strong a taste and a low smoke point. Seed oils are very heart-unhealthy. All in all, avocado oil is a respectable choice from all angles except tradition.
Note: with regard to the seasonings, the above is a basic starting guide; feel free to add more per your preference—however, we do not recommend adding more cumin (it’ll overpower it) or more salt (there’s enough sodium in here already).
Method
(we suggest you read everything at least once before doing anything)
1) Cook the lentils until soft (a rice cooker is great for this, but a saucepan is fine); be generous with the water; we are making a soup, after all. Set them aside without draining.
2) Sauté the cabbage, and put it in a big stock pot or similar large pan (not yet on the heat)
3) Fry the mushrooms, and add them to the big pot (still not yet on the heat)
4) Use a stick blender to blend the lentils in the water you cooked them in, and then add to the big pot too.
5) Turn the heat on low, and if necessary, add more water to make it into a rich soup
6) Add the seasonings (rosemary, thyme, cumin, black pepper, yeast extract, MSG-or-salt) and stir well. Keep the temperature on low; you can just let it simmer now because the next step is going to take a while:
7) Caramelize the onion (keep an eye on the big pot, stirring occasionally) and set it aside
8) Fry the tomatoes quickly (we want them cooked, but just barely) and add them to the big pot
9) Serve! The caramelized onion is a garnish, so put a little on top of each bowl of shchi. Add a little parsley too.
Enjoy!
Want to learn more?
For those interested in some of the science of what we have going on today:
- Level-Up Your Fiber Intake! (Without Difficulty Or Discomfort)
- The Magic Of Mushrooms: “The Longevity Vitamin” (That’s Not A Vitamin)
- Easily Digestible Vegetarian Protein Sources
- The Bare-Bones Truth About Osteoporosis
- Some Surprising Truths About Hunger And Satiety
Take care!
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