Gut reaction

Life without bacteria would be impossible.— Louis Pasteur

It is hard to imagine that as the new century dawned 18 years ago the editors of Science prophesied that “human microbe research would become the new hot topic worldwide”. 

It seems gut microbiome has always been a hot topic. But it took another five years, in 2005, for the prophecy to be realised when Australian researchers Barry Marshall and Robin Warren were awarded the Nobel Prize in Physiology or Medicine for their discovery that peptic ulcer disease was primarily caused by Helicobacter pylori, a bacterium with affinity for acidic environments, such as the stomach.

In people with compromised immune systems this bacteria can cause cancer. In Australia H. pylori is classified as a class 1 carcinogen. Our top research body, the CSIRO, says Australia has one of the highest incidence rates of chronic diseases of the digestive system.

And yet we’re only just learning the link between our gut microbiome and why we get sick. In 2014 new research linked the Western diet to asthma, autism, multiple sclerosis, diabetes, emphysema and cancer. 

What this research did was reveal how a healthy diet could prove to be the best preventable medicine, even cure, because food affects the 1.5 kg of bacteria we carry deep inside our gut. 

In Canada, 2014 research revealed fixing our microbiome was as easy as eating 50g of fibre daily – “mainly in the form of resistant starch-and reduced fat and protein”. It suggested current guidelines (25g-30g) for the consumption of fibre-rich foods were too low and increasing the fibre recommendation to more than 50g was “likely to have an immediate effect on colon cancer risk”.

That’s good news given belly problems in North America account for more than 200 million doctor’s visits and billions in health care costs annually. 

But as early as 2010, Mark Hyman MD — the director of Functional Medicine in Cleveland — was already spruiking the benefits of addressing imbalances in the function and flora of the gut in his blogs.

He suggested five steps to rebalance our gut flora:

1. Eat a fibre–rich, whole foods diet—rich in beans, nuts, seeds, whole grains, fruits, and vegetables, to feed and grow good bugs.

2. Limit sugar, processed foods, and animal fats/protein as they provide food for unhealthy bugs.

3. Avoid the use of antibiotics, acid blockers and anti-inflammatories, which change gut flora for the worse.

4. Take probiotics daily—these healthy, friendly flora can improve digestive health and reduce inflammation and allergy.

5. Consider specialised testing—such as organic acid testing, stool testing (to look at the DNA of the bacteria in your gut), and other tests to help assess gut function.

Jump to 2018 and there are myriad books, including recipes and TV medical shows on improving the microbiome, cementing the gut health revolution prophesied in 2000.

I guess we really are what we eat. And instead of popping a pill all we need do is improve our diet and double our fibre intake.

As a Health Care Ambassador for Health Storylines, it is important to be part of the movement to raise awareness of living a healthy life and being your own health advocate.

Search for this tool, or select add tool and it comes up under the Health Tracking category

It is also crucial to track symptoms. Health Storylines is useful for this, especially the Symptom Tracker tool to record and update symptoms as well as estimate severity from 1-10. It also allows you to rate the impact of all symptoms. Select done to see a graph. In addition you can add a comment, which provides handy information should you need to show it to your GP or specialist.

So, are you ready to join me in living a healthier life? You are, great. Just click on this link to get started. 

The author has used Health Storylines since being diagnosed with neuroendocrine tumours in 2016. After more than a year documenting her health via the app, she has become a Self-Care Ambassador as part of a pilot to encourage others to track their health.

Change won’t wait for some other time

To live is the rarest thing in the world. Most people exist, that is all.— Oscar Wilde

Many NETs patients are frustrated by living life in the slow lane when it comes to getting diagnosis/treatment

It’s been just over two years since discovering I was among 10,000 Australians diagnosed with Neuroendocrine Tumours (NETs).

On the eve of NET Cancer Day 2018 it is time to reflect on this complex and misunderstood chronic condition.

In the past year many high-profile people have been diagnosed and even passed away from this increasingly “common” cancer, including Aretha Franklin.

Yet NETs are still misrepresented in the media and among the medical fraternity, including an embarrassing segment by Dr Oz misstating Aretha died of the deadlier form of pancreatic cancer. Luckily ABC’s Detroit station WXYZ got the story right, but LACNETs explained it best.

It seems obvious that help is needed to raise awareness of the rising rate of NETs not only abroad but especially in Australia. Specifically the issue which needs to be taken up is to remove NETs off the “rare cancer” list so that it can be better funded and researched.

NETRF.org study

In an except from a US study, this statement particularly resonates:

Making the case for increased attention to NETs

“I think the most important thing this paper does is help us articulate the size and scale of the NET problem to help us position and articulate how important this is on a population level,” –co-author Dan Halperin, MD, MD Anderson Cancer Center, who is also a NETRF-funded researcher

Further there are few support programs in Australia for people diagnosed with NETs. After my surgery to remove the tumour(s) I was sent on my way with little understanding of what to expect next (other than six monthly blood and urine tests and an annual nuclear scan). Treatment was “active surveillance/watchful waiting”. Given we are conditioned to take the fight up to cancer with “chemo”, waiting for it to return seemed inhumane and negligent. If only treatment had been better clarified. How would NET patients know these tumours don’t respond well to chemo or radiation and that other “big gun approaches” like targeted therapy are used only as a last-line defence. 

This poor approach to patient education perhaps is due to the fact there are few NETs specialist hospitals worldwide. Australia has ONE centre of excellence for NETs, the Peter Mac in Melbourne, though Sydney’s Royal North Shore Hospital is recognised as a NETs specialist centre, due to the sheer volume of NETs patients it sees.

As a NETs patient if you aren’t seen by a NETs specialist hospital from the start (because you live in a different region, state or rural area), you are not advised of such centres existing.

It took six months post-surgery to discover there was a NETs-specialist hospital in my state. Even so I was not encouraged to transfer as “watchful waiting for non-functional NETs was all I needed”. Within a year I developed suspected Carcinoid Heart Disease, suggesting my NETs were functional. Sadly I wasn’t aware of European Guidelines which Australia follows that suggest all NETs patients should be seen by a NETs specialist team in a NETs specialist centre. Statistics show that the average oncologist rarely sees a NET patient in their working lifetime. Yet this cancer is on the rise (7 out of every 100,000 worldwide).

There is ONE organisation in Australia supporting this cancer: The Unicorn Foundation, which states there are 1800 new cases diagnosed each year. It says there are 10,000 known cases in Australia. That should send alarm bells ringing among a population of just 24 million given the USA reports just over 100,000 cases among its 325+ million residents. Why is NETs so prevalent here? 

As a Health Care Ambassador for Health Storylines, it is important to be part of the movement to raise awareness for this complex disease that gains little recognition or understanding among GPs and specialists. Unfortunately most NETs patients’ diagnosis can take many years because: If you don’t suspect it, you can’t detect it.

I hope support, research and awareness for this condition can be improved with every NET Cancer Day.

In the meantime, NETs patients must continue to be their own health advocate. In the words of Barack Obama: Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. You don’t need a dire diagnosis to act now. If you’d like to join me in living a healthier life, click on this link to get started.

PS: If you know anyone diagnosed with NETs who would like to tell their story and inspire others with the condition, please contact linda@selfcarecatalysts.com

The author has used Health Storylines since being diagnosed with neuroendocrine tumours in 2016. After more than a year documenting her health via the app, she has become a Self-Care Ambassador as part of a pilot to encourage others to track their health.

It’s the thought that counts

“What we are today comes from our thoughts of yesterday, and our present thoughts build our life of tomorrow: Our life is the creation of our mind.” – Buddha

CourtesywikiHow

Courtesy of wikiHow

Creating the life we want is difficult. There is always some obstacle in our way: work commitments, finances, time pressures, how our decisions impact others.

But we know they are just excuses to stop us from moving forward. How crazy is it that we knowingly deny ourselves the life we deserve.

There’s a great saying by Alexander Graham Bell:

“Sometimes we stare so long at a door that is closing that we see too late the one that is open.” 

It’s true most of us dwell more on the reasons why we can’t do something instead of finding a solution to how we can. In effect, we miss opportunities.

Our negative thoughts hold us back.

Not everyone is a risk taker, for example a neighbour put it best. “I want to, but I just don’t have the guts to sell up and take off”.

He’s faced his reason why he can’t. He doesn’t have the resolve.

Courtesy of PsychologyToday

Courtesy of PsychologyToday

But that’s where positive thoughts can turn a situation around. When the chatter in our head overrides reason, we need to stop, take stock and write down all the pros and cons.

Because there is a way to get through a crisis, to achieve change, and create the life we want. We just need to methodically work through the things on our list that have stopped us to this point.

Another way to reprogram (or organise) our thoughts is adopting “creative visualisation” techniques. It works like this – visualise your goal as already accomplished. That is, see yourself already there!

When you do that you consciously as well as unconsciously start making changes to bring about change. Your thoughts, habits and actions help you attract the thing(s) you want.

If your goals aren’t so lofty and you seek peace of mind for more simple things in life, then you already have those tools at hand.

PositiveThoughts

Courtesy of HealthStorylines

HealthStorylines’ Positive Thoughts tool is powerful. You write down the thoughts you felt negatively about in one box, and in the next you’re challenged to come up with a brighter way of thinking about the experience.

It’s a great way to track and challenge negative thoughts.To get the best result, track your thoughts for a week. Just click on “add tools” and type in “Positive Thoughts” in the search results field to bring it up.

Another great tool to focus the mind is to watch the Mindfulness Learning video. Just select “add tools” and search for it.

MindfulnessLearning

Courtesy of HealthStorylines

In no time you will be on a positive journey to track your thoughts. Click on this link to get started.

The author has used Health Storylines since being diagnosed with neuroendocrine tumours in 2016. After more than a year documenting her health via the app, she has become a Self-Care Ambassador as part of a pilot to encourage others to track their health.

Don’t toss and turn all night

We know sleep is vital for our health, but how many of us get the recommended seven to nine hours each night?

If you’re among the throng that struggle to get the shut-eye you need, you’ll be surprised to learn there is a solution — tweaking your daily routine.

Given sleep deprivation is linked to high blood pressure, obesity, negative mood and behaviour, it’s important to get a good night’s rest.

A bad night not only zaps your energy, but also sets you up for another bad day, followed by another bad night.

And so the revolving door of poor sleep begins.

So how can you can break the cycle?

Unless you have something clinically wrong, there are some simple changes you can make to improve the situation.

In this Health Storylines challenge, use the Daily Planner to track what activities you do during the day. If you see a pattern of poor sleeping, it often can be linked back to those activities.

That is, the best way to break the cycle is to make changes to your daily routine and night-time habits. For example, start going to bed at a specific time every night.

It is important to reset your body clock. If you go to sleep and wake up around the same time each day, even on weekends, you’ll retrain your brain to begin a healthy snooze-wake schedule. But you’ll need to stick to this for at least seven days for your body and brain to adjust.

Online health and well-being site WebMD suggests adopting this simple routine will eventually help you nod off more quickly – and have a sounder rest through the night.

Another tip is to avoid exercise too close to bedtime. Aim to complete any workouts three to four hours before heading off to bed.

Of course if you stick to a healthy diet and eat right at night, by avoiding heavy or fat-laden foods, you’ll also improve your sleep. Big meals eaten late overload the digestive system, which disrupt rest. If you’re really starving, try a light snack, such as a smoothie, or  bowl of cereal, or crackers and cheese.

And you’ll need to watch what you drink. Stop sipping beverages, even water, in the last two hours before bed. That way you’ll avoid a midnight toilet run. Alcohol is a known rest disruptor, causing you to toss and turn throughout the night, and wake up dehydrated.

Another tip is to lower the lights about two to three hours before you plan to go to bed. This sends a signal to your brain to make melatonin, the hormone which brings on sleep.

When we get the sleep we need, it helps us feel mentally sharp, emotionally balanced, and full of energy the following day. It also ensures a strong immune system.

I hope you will join me on this journey to improve sleep. Just click on this link to get started.

The author has used the Health Storylines since being diagnosed with neuroendocrine tumours of the small intestine in 2016. After more than a year documenting her health via the app, she has become a Self-Care Ambassador as part of a pilot to encourage others to track their health. 

The greatest wealth is health

“To insure good health: eat lightly, breathe deeply, live moderately, cultivate cheerfulness, and maintain an interest in life.”  ~ William Londen

Today is International Self-Care Day. It is really important to look after yourself. If you don’t feel great, investigate (the cause). 

You owe it to yourself to live the best life feeling good, even great. You may need only tweak your self-care by eating more healthily, drinking more water, taking a multi-vitamin, getting 15 minutes of sunshine daily while adding exercise to your routine. Or, you may need to demand to see a specialist to confirm your hunch that there’s something amiss.

The best way to get your health issues heard is to track your symptoms so you can take something concrete to a GP and discuss the next step.

FoodDiaryI use Health Storylines Food Diary and Symptom Tracker tools for that. You don’t have to suffer from a chronic illness to take advantage of this easy-to-use tracking system. It you have any food intolerance, or just generally don’t feel up to par, tracking what you eat and when may be key to shaping a new way of living that can optimise your health.

Who wants to go through life feeling unwell. By tracking your reaction to foods you consume, you will discover which products trigger symptoms (bloating, gas, nausea even constipation or diarrhoea).

It takes about two weeks of monitoring what you eat and how you feel to see a pattern. It is easy to do, just take five minutes at the end of your day to write down what you ate (via the Food Diary) and how it made you feel (Symptom Tracker). 

There’s good reason for the saying food is medicine. If you need a kick along, follow The Australian Dietary Guidelines, which has information about the types and amounts of foods, food groups and dietary patterns that aim to: promote health and wellbeing; reduce the risk of diet-related conditions, such as high cholesterol, high blood pressure and obesity.

Your GP can refer you to a dietician and exercise physiologist if you want to tackle two issues together.

For those suffering the same condition as me (NETs), this video provides a quick snapshot into avoiding food triggers. https://www.youtube.com/watch?v=45uK0yWEbEQ

In no time you’ll be on your way to feeling great. Happy International Self-Care Day!

Hope you join me on the fitness journey to track food and symptoms. Just click on this link to get started.

The author has used the Health Storylines since being diagnosed with neuroendocrine tumours of the small intestine in 2016. After more than a year documenting her health via the app, she has become a Self-Care Ambassador as part of a pilot to encourage others to track their health.

Take a walk on the scenic side

Walking meditation is a way to practice moving without a goal or intention. Mindful walking means walking while being aware of each step and breath. — Gaiam

There’s lots of statistics explaining how exercise makes us happier. We’re fitter because of it, the feel-good endorphins released improve our mood and, yes, it boosts our immunity.

So what about simple walking. How does that fit into the exercise equation? Glad you asked. Like daily exercise, just going for a stroll has heaps of health benefits. And what better way to get to know your neighbourhood.

Within five minutes of going for a walk, you’re guaranteed to feel happier.

Now take it to another level by introducing mindfulness into your walk. You need to become aware of all the nooks and crannies you didn’t noticed previously. Like the bird on the branch, the rustle of the leaves, the wind touching your face, even the hard surface under your feet.

How does that make you feel? Calm springs to mind. By allowing yourself to be present you’ll really notice your surrounds and bring the beauty of your neighbourhood to life.

What matters is the walk, what you see, feel and hear with each step. In turn you reap the health benefits of walking as an exercise, as well as gaining mindfulness by being “in the moment” and discovering an ability to just let everything else go.

Now add breathing to the mix. Swing one arm back and forward, and rest the other on your abdomen. Feel your tummy go in and out and you’ve mastered the art of breathing deeply.

It feels great. It’s like you’ve never breathed properly until you learn to move the breath away from your chest and into your diaphragm.

With each step and breath oxygen awakens your senses allowing your heart rate to drop as you walk, not increase (no matter how fast you go).

Once you’ve signed on to Health Storylines, select tools and under Physical Activity you’ll find the Exercise Diary. Just add it and get tracking!

This Health Storylines challenge can be done daily, or weekly but as usual you need to track it. Use the Exercise Diary tool to record your efforts. It allows you to set a date, the activity and length of activity. As part of your circle of support, you can also include family and friends who have joined you on Health Storylines. It’s a great way to expand your support to achieve your goals.

It’s all about introducing fitness into your day. The aim is to build on this so you can introduce more intensive exercise for up to 30 minutes. Next you’ll be ready for the challenge of walking daily over 5 days. Once you’ve achieved that, who knows it could become a daily meditation for you, as it has become for me.

Hope you join me on the fitness journey of walking each day to enjoy your surrounds. Just click on this link to get started.

The author has used the Health Storylines since being diagnosed with neuroendocrine tumours of the small intestine in 2016. After more than a year documenting her health via the app, she has become a Self-Care Ambassador as part of a pilot to encourage others to track their health. 

You can run but you can never hide

“There are no great people in this world, only great challenges which ordinary people rise to meet.” ~William Frederick Halsey, Jr.

There are some events in life that take you on a journey you never expect. When that happens some of us drop off the planet, the rest shout out loud.

I took the first option, hence why it has been been two years since I posted on RoamingRave. Now it’s time to move to phase two and become a self-care ambassador.

I’ve been invited to help create a community where individuals encourage and empower each other to take care of themselves.

WHY ME, WHY NOW

To explain, as a major health issue beset a sibling, it then targeted me. I didn’t see it coming, nor the long road back to recovery.

Sadly my sister didn’t make it. She joins another sibling and our father to succumb to cancer in the past 10 years.

Because of my siblings’ cancer journey I constantly got checked but my diagnosis was very different to theirs. It’s called Neuroendocrine tumours, or NETs for short. This uncommon, some consider rare, cancer develops from hormone producing cells, the symptoms of which mimic lesser conditions like abdominal pain, allergies and fatigue.

Diagnosis is difficult. Carcinoid.org explains it typically takes five to seven years to receive the correct diagnosis because there are many different types of NETs. It doesn’t help that few GPs ever see a patient with NETs over their working lifetime.

In the USA in 2016 there were only 115,000 diagnosed with the condition, far fewer in Australia. And there is no cure.

Thankfully the tumours are often slow-growing, and surgery is an option. So I guess you could say I got lucky. Lucky mine were found, and lucky I was a candidate for surgery.

Like a lot of NET patients oncology wasn’t part of the discussion but when they opened me up from the breastbone to the pubic bone the surgeon found the tumour had spread to my lymph nodes.

That said, there is no “active treatment” for my stage 3b midgut NETs, only “wait and see”. Chemo doesn’t work well on NETs and reserved for those whose stage 4 tumours have spread to the liver, lung or bone. But there is targeted hormone treatment for sufferers of carcinoid syndrome.

So since my surgery in September 2016 I have sat and waited, worked hard on recovering physically, mentally and emotionally and researched the pants off this condition.

Seeking a second opinion, November 2017

Prognosis has improved and patients can live for many years with NETs as a chronic condition. So rest assured, because mine metastasised, I will be checked by an oncologist for at least 5-10 years to ensure there is no recurrence. My “new normal” post-surgery involves six monthly blood and urine tests and an annual nuclear scan.

It has been, and continues to be, a scary ride, made harder by the fact that I look fine. My external scars are covered up and out of sight but the scars on the inside are the ones you can’t hide.

Since being diagnosed I have found great comfort from wonderful NETs organisations such as http://www.unicornfoundation.org.au in Australia and http://www.carcinoid.org in the USA/Canada. Next blog I’ll share my Health Storylines challenge. I hope you will join me.

This post is dedicated to my sister Belinda, who passed away nine months ago. She showed amazing strength of character in the last six months of her life. Her concern for others was astonishing. It never mattered how sick she got, she always wanted to know how everyone else was.