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.

Food for thought

The only way to keep your health is to eat what you don’t want, drink what you don’t like, and do what you’d rather not. Mark Twain

For good health we need carbohydrates, proteins, fats, vitamins, minerals and fibre, known as the six building blocks. When we eat the correct combination we provide the fuel our bodies need to grow, replenish, repair and strengthen.

Yet many of us don’t get enough nutrients in our diet. That’s where the HealthStorylines’ Diet Log is a powerful tool in helping to achieve a healthy life. By tracking what we eat, when and how we feel (rating hunger or fullness), we can keep our diet in check.

The nutrients provided in a balanced diet allow the body to function correctly, which is key to healthy living. Without proper nutrition we’re more prone to disease, infection and fatigue.

The seventh building block for a healthy diet is water, discussed at great depth in earlier RoamingRAVE posts.

‘Most people don’t eat enough fruit, vegetables and wholegrains.’

Let’s not forget the importance of a balanced diet. Our organs and tissues need proper nutrition. Healthline.com says to get the right nutrients from our diet, we should consume the majority of our daily calories in: fresh fruits. fresh vegetables and whole grains.

One of the most important benefits of fruits and vegetables is the amount of beneficial antioxidants and phytochemicals they contain.

Antioxidants give fruits and vegetables their different colours. Sanitarium.com.au suggests a handy way to make sure you’re getting a good range of antioxidants and different health benefits is to choose those you like from each of the five different colour groups.

Things to remember

  • Eating a wide variety of healthy foods promotes good health and helps to protect against chronic disease.
  • Eating a varied, well-balanced diet means eating a variety of foods from each of the five food groups daily, in the recommended amounts.
  • It is also important to choose a variety of foods from within the five food groups: (1) Vegetables and legumes/beans (2) Fruit (3) Grain (cereal) foods, mostly wholegrain and/or high cereal fibre varieties (4) Lean meats and poultry, fish, eggs, tofu, nuts and seeds and legumes/beans (5) Milk, yoghurt cheese and/or alternatives, mostly reduced fat.

It is easy to track your vegetable and fruit intake via HealthStorylines’ Diet Log to ensure you achieve your daily goal. To get the best result, track the number of vegetables and fruits you eat each day for a week. Just click on “add tools” and type in “Diet Log” in the search results field.

In no time you will be on a positive journey to increase your veggie intake. Click on this link to get started and join me in living a healthier life.

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. 

Water offers a great way to feel good

Even mild dehydration can drain your energy and make you tired. mayoclinic.org

Here’s a snapshot of my week using Health Storylines to track my water intake and exercise goals. Notice I missed my target here and there? No matter I just got up the next day and tried to reach my goal again.

Did you know the more fluids we drink the more energised we feel?

Water equates to energy.

And the way it energises us may not be what you think. Basically water combined with fibre works together to keep us regular and avoid constipation. It nourishes our digestive system by helping us to digest soluble fibre, according to Medical Daily. 

This function boosts energy. To get more fibre in your diet, click on this link from Nutrition Australia which shows the three different types of fibre and their functions and health benefits.

WebMD Consumer Network’s OnHealth explains further how water dilutes waste and helps eliminate toxins from the gastrointestinal tract. When we’re dehydrated stools become hard, dry and more difficult to pass. But when we up our water intake, it works with fibre to bulk up stools and make them easier to pass. See a previous post on Stool Health and the Bristol Stool Chart

BrainHQ says even slight dehydration causes a reduction in blood volume that makes the blood thicker and more difficult to pump. That can slow blood flow to the brain and body and make us tired.

The bottom line is staying hydrated ensures we’re getting adequate fluids daily to stay regular, feel good and be more active. 

Did you improve your water intake over the past few days? If you’re still doing the Health Storylines Challenge, return here when you’re done to complete this poll.

If you haven’t begun the challenge to Drink 8 cups of water every day for 5 days, now is your chance. Click on this link. It is never too late to get started. 

Next Health Storylines Challenge is even easier, all you need do is “get out in the open and go for a scenic walk in your local area”. And, yes, there are great health gains to be made.

Join me here soon.

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