Simplify Cancer

Today, I am giving a complete virtual tour my new book called Simplify Cancer: Man’s Guide to Navigating the Everyday Reality of Cancer! So excited to finally share some great training here because I know it can help! It’s the book I wish I had – a practical, hands on guide on dealing with stress, craziness and overwhelm that come with cancer! Here are some things that we cover today:

Simplify Cancer: Man’s Guide to Navigating the Everyday Reality of Cancer Book

Virtual Book Tour Video

You never expect to get testicular cancer. Getting the news is such a shock to the system and you are completely unprepared! It’s a crazy time in your life when you don’t know what’s going on, or how things will turn out. Having gone through chemotherapy and operation for testicular cancer, I’m here to share with you exactly what it’s like, what I learned along the way and things I would have done differently knowing what I know now. Here are some things that we cover today:

Simplify TC

Simplify Cancer: Man’s Guide to Navigating the Everyday Reality of Cancer

We know that life after cancer treatment is not always easy.  Maybe you don’t have as much energy as you’d like, or still dealing with side-effects, or maybe you’ve put on weight. And today, I’m talking to Lauren and Elise, they’re nutritionists who specialise in oncology and they share fantastic advice on getting your nutrition right after cancer. Here are some things that we cover today:

Oncore Nutrition

Instagram: @OnCoreNutrition

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Email: [email protected]

Linked in: https://www.linkedin.com/in/lauren-atkins-983268108/

https://www.linkedin.com/in/elise-den-129837149/

https://www.linkedin.com/company/oncore-nutrition/

Joe:                 Thank you so much for taking the time to talk with me today, I really appreciate it, I loved our conversation before on nutrition before and during cancer treatment.  Now, I’m really excited to get your insight into really eating well after treatment.  Tell me, first of all, what I want to understand is your perspective and maybe we can start with you, Elise, is why nutrition is so important after cancer treatment?

Elise:                That’s a great question, Joe.  Nutrition, as we spoke about last time, is hugely important during treatment, but equally as important after treatment as well.  Often, some of the anti-cancer treatments of therapies or surgeries.  That could be chemo, radiotherapy, even immune therapy obviously damage the cancer cells and kill off the cancer cells, which is exactly what we want them to do.  What they also unfortunately do is damage some of our healthy cells, as well.  Good nutrition and eating well helps to repair and heal our healthy cells.

It also helps to keep us stronger during treatment, the stronger we are during treatment, this improves our management of side-effects, after treatment, as well.  It provides our bodies with the energy that it needs to function efficiently and effectively.  By achieving and maintaining a healthy weight, this actually helps to reduce our risk of cancer recurrence in the future.  As well, maintaining a healthy weight helps to reduce our risk of other chronic diseases such as heart disease, diabetes, kidney disease, liver disease, etc.  I guess because of all of these factors, it really highlights how important nutrition is after treatment as well.

Joe:                 Yes, that makes so much sense, Elise.  You know, Lauren, because most people, we don’t really think about cancer and nutrition in the same space.  Is there a science behind it?

Lauren:            Yes, heaps of science behind it, Joe.  We wouldn’t be here if there wasn’t.  We only practice when there’s really solid evidence to support the advice that we’re giving.  What we’re really fortunate to have is a really strong community of wonderful researchers and scientists and health professionals out there, who are really dedicated to making sure that they look into the best nutrition advice in the cancer survivorship space, not just generally for people who have undergone cancer therapy, but specifically for different types of cancer as well.

The nutrition advice for someone who’s gone through breast cancer treatment could very well be different to that of someone who’s gone through pancreatic or lung cancer treatment.  Huge amount of science to support the advice that we give.  One really useful organisation is the World Cancer Research Fund, who have a wonderful report that summarises the evidence that’s available to us to provide recommendations to eating and drinking after cancer treatment.

Joe:                 I think it’s so fantastic that it’s targeted toward people who have gone through a specific cancer treatment or a specific cancer, because that means that your advice is really specific to you.  I know that when you are helping me and there were specific recommendations for things to keep in mind for testicular cancer, which is incredibly helpful, because that means you can look at things that are specific to you and your health and where you’re at right now.  Tell me, Elise, again, I want to zoom out and talk about the biggest obstacles that we really have in creating a healthier life after cancer, what are some of the things that really get in the way for us?

Elise:                Yes, and, Joe, you would know first-hand that going through cancer treatment changes your life profoundly.  We have lots of clients and patients tell us that their life is actually never the same after cancer treatment, which I’m sure you can vouch for.  One of the biggest obstacles I find, which is challenging for patients to overcome is the ongoing side-effects after treatment.  It’s very well-established that there are a whole host of side-effects as a result of anti-cancer therapy.  That could include nausea and vomiting, fatigue, ulceration of the mouth or the oesophagus.  Issues with your bowels, so constipation or diarrhoea.

A lot of these side-effects are not only present during treatment but after treatment, as well.  It’s really difficult for patients to actually get back into normal life, to get back into work and relationships with their loved ones and families after they’ve been through this sort of treatment and after they’ve experienced all of these side-effects.  Often, a lot of these side-effects result in patients not being able to eat well or enough, which can lead to weight loss, but also what’s important for us to note is that it can lead to muscle wasting.

Now, what we know is that after treatment, patients who have actually lost their lean body mass and their muscles actually have a slower metabolic rate.  Now, this slower metabolic rate can often result in compensatory weight-gain after treatment, so this, again, makes it a really challenging obstacle because patients are often being told during treatment to eat high energy, high protein foods, which are often good, but sometimes they are encouraged to eat foods that are more energy dense.

Not necessarily as nutrient rich to help maintain their weight during treatment.  When they continue with these behaviours after treatment, they end up gaining weight, which can be a really challenging obstacle to overcome.  When you’ve just gone through a really difficult time going through chemo radiotherapy, and then trying to transition back into normal life.

Joe:                 Yes, I can completely agree with you, that it changes your life completely.  Maybe, Lauren, you can talk to me about what is a metabolic rate and what is a good metabolic rate?

Lauren:            Metabolic rate really is a measurement of how your body processes fuel.  If you’re someone who, for example, has a high metabolic rate, it means you’ve got a fast metabolism, which means that you might break down and burn through fuel more quickly than somebody else.  If you’ve got a slower metabolic rate, you might burn through fuel more slowly and you’re more predisposed to putting on weight.  Storing fuel as fat.  What we know and what Elise is talking about before is that if you lose muscle mass, you end up with a slower metabolism, and a slower metabolism means that you’re more likely to gain weight as fat.

That can be detrimental to our long-term health, as Elise mentioned, but also, we know that if you’ve finished your cancer treatment and your energy levels are low and you haven’t been exercising or moving or working as much as usual, your whole body system isn’t working as it used to.  Simply reverting back to what you used to eat might not necessarily be the best way forward for you.  You’re now in a new body to some extent.  It’s been through a lot; a lot of trauma and it’s got different needs to what it did when you first started your cancer treatment.

Joe:                 Yes, I love that you talk about the fact that we can change it and influence it.  I think when it comes to nutrition and your metabolism, I always thought that it was just, my mistake, but I always just thought that it’s something that you are basically born with and you have to live with.  You can’t really influence it in any way.  It sounds like what you’re talking about is, we can actually influence it and change it so that it works for you and not against you.

Lauren:            Absolutely, and we can do in many ways.  We can do that by altering body composition.  For example, putting on muscle mass and losing body fat will change your metabolic rate.  Certainly, there are different ways foods are processed in our body.  If we choose foods that are broken down and absorbed really quickly, versus foods that are really slow release energy, that changes the way your body functions, as well.  It changes the hormones that are released, the inflammatory markers that circulate, and there are lots of links between the fuel that you eat and how your body will function from an energy point of view and from a health point of view.

Joe:                 What are the best things that you can recommend, in terms of the things that you can keep in mind, in terms of importance?  When it comes to eating well after cancer treatment.  Slow release?

Lauren:            Joe, look, the best foods to eat and what Lauren and I always recommend are whole foods.  Foods that are not packaged or processed.  Usually, these sorts of foods are fruits, vegetables, wholegrain breads and cereals, nuts and seeds.  Quality protein.  Poultry, chicken, turkey, lean meats, fish and sea food.  Also, legumes, so things like lentils, chick-peas, kidney beans.  Really, anything that comes in a natural state is a really valuable addition to your diet.  It’s about finding balance in how to separate which portions of each thing is right for you and your body.

That’s going to be different and unique for every individual, but one thing that’s really key in terms of promoting a strong and healthy metabolism is ensuring that your meeting your body’s protein needs.  We do find a lot in cancer survivorship.  After cancer treatment, there is a shift in the way that people eat to be really convenient and easy foods, that tend to be rich in carbohydrates and quite quickly absorbed by the body.  As dieticians who work in cancer care, we know that the advice that we give someone during cancer treatment is quite different to the advice that we give someone after cancer treatment.  It’s really key to speak to a professional in the field to transition your diet form your during treatment advice, to your after-treatment advice, so you don’t hang on to some of those habits that are no longer suitable for you.

Joe:                 What about organic foods?  Is that something that you guys recommend focussing on?

Lauren:            Not necessarily, Joe.  There’s lots of research done into organic foods and whether or not they’re more health-promoting than others.  What the research generally shows at the end of the day is that individuals who eat an organic diet, in some studies, have shown that they’ve got fewer health conditions in long-term studies.  What we also know about people who eat organic food is that they tend to be of a higher income level.  They tend to be better educated, have good jobs, they can afford good healthcare.

Making a direct link between eating organic and being healthier isn’t possible, because there are too many other factors associated with eating an organic diet.  In terms of recommending organic food, we absolutely wouldn’t, eating any fresh produce is very beneficial, if you can afford organic food and it’s your preference and it makes you feel good.  We are 100 percent supportive of that because we know that there may be some benefits, but it’s not essential in order to be healthy.

Elise:                One thing that we often get a lot of clients ask us, Joe, is the nutrition composition of the organic food superior?  Again, what the research tells us is that actually it’s not that different to normal fresh-produce.  One thing we always recommend is, if you do want to eat normal fresh produce, it’s just to make sure that you give it a really good wash before you eat it, to make sure that it gets rid of any herbicides or pesticides.

Joe:                 I think that’s great advice because it really also, you just shine the spotlight on the fact that it’s affordable and doable and that it’s all realistic.  I think there’s a lot of stigma around eating well, that it has to be expensive and that it has to change your lifestyle.  Whereas, I think what you guys are saying is that it’s really something that you can do quite naturally.

Lauren:            For sure.

Elise:                One other thing with organic produce, too, Joe, is that during cancer treatment, so if you’re undergoing cancer therapy and your immune system is compromise, so with some chemotherapy, for example, there is a theory that organic produce is a less safe option for you.  If we think about the normal processing of other produce that uses chemicals to help rid that food of any bacteria or germs, that’s really important for someone with a poor immune system, because that bacteria that might be present on perhaps more likely on organic produce, could be a risk for infection for that individual.  There is an argument that organic food during cancer treatment is not a good idea and we should be having the foods with the chemical processing having been done to it.

Joe:                 Wow, I did not see that coming.  Cool, I think that’s really important to know.  I think I want to jump in with the body composition thing.  I think we’re talking about changing the body composition.  The first time I heard that phrase, I think my oncologist said that your body composition has changed after treatment.  I was like, what does that actually mean?  I think I realised that it was a polite way of him telling me that I got fat.

It’s important to know where you’re at, which I think leads me to really my next question.  I think one of the things that is incredibly important when we’re talking about changing the way you eat, changing your lifestyle, maybe doing some exercise or movement, well, what are the metrics that you can keep in mind so that you can focus on getting the right results for your body, for you and your life?

Elise:                We can probably even use you as an example for this, if you feel comfortable?

Joe:                 Yes, by all means.

Elise:                If all we did in your care was measure your weight, we would have seen no change.  Would you agree with that?

Joe:                 Absolutely.

Elise:                Your weight hasn’t changed.  What we’ve known through other measurements that we’ve taken, looking at your fat mass and your fat stores, is that your bodyweight hasn’t changed, that your fat mass has significantly decreased, and your muscle mass has increased.

Joe:                 Yay.

Elise:                Which is a huge achievement, and certainly an important think to report back to your oncologist to say, “Yes, my body composition has changed, this time perhaps in the right direction.” Certainly, it’s very important that we look at different metrics of body composition.  We can do that certainly through weight, but there are lots of limitations to that measure.  There are some really clever machines that we can use that will help to measure body composition in terms of fat and muscle mass, your water percentage, the weight of your skeletal mass, so your bones.  These are often available in a clinical setting.  You might have heard of Dexa-scans, or BIA scales.  They’re sometimes available and really useful to have a more accurate measure of what’s happening in your actual body.

Joe:                 Is this something that you would recommend as part of the practice of someone who is working with you, you establish a baseline and then you would work towards some sort of a target, right?  Towards where you want to be?

Lauren:            Absolutely.  The challenging thing is, Joe, that often scales like the BIA scales of the Dexa machines, they’re very expensive and they’re not often accessible.  Therefore, using different metric system like your waist circumference, there’s another measure called mid-upper-arm muscle circumference as well.  There are different options and other metric systems that we can use when specific body composition analysis machines are not present.

Another screening tool we use is something called the PGSGA, which is a patient generated subjective global assessment.  That’s a screening tool that assesses a patient’s nutritional status and that’s, again, a specific tool that’s validated in the oncology population.  A tool that I’d say we pretty much use for every patient.

Elise:                Part of that tool, Joe, is that we look at different muscle stores and fat stores across the body.  When I poke and prod you, I’m doing it for good reason.  That’s to identify any change in your muscle mass and fat mass compared to previous consults.

Joe:                 Yes, I’m glad to know that there was actually a reason to the madness.  That’s good.  Well, I think it’s incredibly, like, all of those metrics, guys, that you touched on, I think are incredibly important from the perspective of being motivated.  I know that when it comes to getting results.  I think it’s no secret that when you go to work with a nutritionist, such as yourselves, who specialise in oncology, you’re going to have to make some changes.  I think that’s true for any area of life.  If you want to get results, then you really want to be prepared and you want to be focused on the results that you want.

I think that is one of the things that was really important for me and this was important when I caught up with you today, Lauren, is to know that we measured where I was at and to know that I was making progress.  I think for all of us, when it comes to whether that’s losing weight or having more energy or decreasing other side-effect, whatever that might be for you, you really want to know that you are making steps forward, that you are making consistent progress that is right for you and your life, because that’s what keeps you motivated.  Otherwise, it’s very hard to stay on track, right?

Elise:                Absolutely, for sure.  What we spoke a lot about today was not just the measurements in terms of your body composition, but really how you’re feeling and what you’ve noticed in the change of your energy levels, your function and how you feel in your own skin.  The ability to be able to track that and report that back to somebody and make sense of it and relate it to the food that you’re eating and how you’re fuelling your body is so motivating.  What’s not so motivating is a simple number on a scale, it’s just a number.  For a lot of people, it means a lot, but I think what perhaps means more is how you actually feel and how your body is functioning.

Joe:                 Yes, absolutely.  Elise, what about when we’re talking about healthy weight or healthy body composition?  What are some of the things that we should keep in mind when we’re thinking about that?  What is healthy?

Elise:                Look, Joe, healthy is different for everyone.  One measure that we often use, again, it’s not gospel and certainly not the best measure, is the body mass index.  That is based on a healthy weight range.  The equation is your weight divided by your height in meters squared.  Then it gives you a specific number that fits you into different categories, be that underweight, normal weight, overweight, or obese.  Again, while we know that your weight on the scales is not always going to be the best indicator for your progress, it is a good general measure to know if you are within the healthy weight range.  Where this gets a little complex is for patient who do have a large volume of muscle mass.

We know that muscle weighs more than fat, therefore, for a male that has a really strong physique, that has a lot of muscle, they actually might fall into the overweight or obese weight range, but for us as dieticians, by eye-balling them, we can actually tell that they don’t fall into that weight range.   I guess that is a good general measure of your body composition for the general population.

Lauren:            You’ll know, Joe, that similarly with your weight, your weight didn’t change, so your BMI wouldn’t have changed.  It doesn’t give you the whole picture.  When it comes to looking at body composition, it’s important for a qualified health professional to look at certainly different stores, whether it’s your muscle and fat stores and your fluid status.  I think more importantly doing a really thorough assessment of your nutritional intake and identifying what links there are to what you’re eating and how that’s fuelling your body.

Regardless of someone within a normal or even an underweight category, they might be eating all of their nutritional needs, but are of nutrient poor foods.  They might be meeting their caloric needs or energy needs just with ice creams all day.  They could be weight stable and their BMI could be healthy, but that’s not a reflection of health.

Elise:                I do think it’s a good starting point for someone who might be starting out, who wants just a baseline measure, they maybe don’t have access to the IA scales or a Dexa scan.  They want to know what their starting point is, it might be at the beginning of their health journey.  BMI is a really simple and easy equation to measure to have as a baseline.  As Lauren mentioned, obviously, making sure that you’re taking into account the foods that they’re eating but also their visual muscle status and body composition, as well.

Joe:                 Yes, absolutely, and as someone who’s going through active treatment, I know that this whole fear of cancer coming back is a pretty big deal because before every check-up, you’re thinking, well, is it going to come back.  You get all of these worry thoughts into your head.  What about when it comes to nutrition after cancer, and I know we touched on that earlier, but could you talk more about how can nutrition help to minimize the chances of cancer recurrence, minimize the chances of it coming back?

Elise:                There’s strong evidence to support that our nutrition certainly does play a role in the risk of cancer recurrence.  The biggest evidence exists for our bodyweight, and an individual cancer survivor who might be holding extra weight and be overweight or be in the obese category, has a high risk of recurrence than someone who is at a normal weight.  One of the biggest things that a cancer survivor or someone who’s finished treatment for cancer can focus on for their long-term health is making sure that they reduce their weight to be really in a healthy weight range.  That’s where it’s so key to have support to be able to take those measurements and review your diet to make sure you’re preserving your health as best you can.

Joe:                 Is it about body weight or is it about a specific, say, body fat?  Fat in a particular area of the body?

Elise:                Unfortunately, the research hasn’t been able to pinpoint what that is, all the research shows, and there’s strong research, but it’s not specific research, is that weight classification that’s key.  While we have predictions and hypotheses that it is the fat stores that are contributing to longer term cancer recurrence risk, the research isn’t yet strong enough to support that claim.

Lauren:            I think, Joe, with heart disease, diabetes, certainly that central adiposity, there’s a significantly increased risk of those chronic conditions.  As Lauren said, as far as cancer goes, I think there’s a lot more research in that space that needs to happen before we can make those solid claims.

Joe:                 I know, this is the case for me, and I think it’s the case for many other folks, as well, that after going through cancer treatment, particularly if it’s chemotherapy or radiation, sometimes it can really dramatically increase chances of heart disease.  Definitely that’s why having a healthy weight can also make a big difference.  That’s one of the reasons why I am concerned.  I think one of the things about cancer, at least in my experience and in my journey is, I couldn’t really do anything about getting cancer in the first place.   Now, having gone through the experience and now,

luckily, I’m cancer-free now, but I’m thinking, if I can do anything to minimize the chances of it coming back or getting some other cancer or getting some other nasty conditions such as heart problems and stuff, that I’m at a higher risk of, then I really want to be in control of that.  I really want to do my best to try and influence that.  I think when it comes to exercise and when it comes to nutrition, and to getting some proper advice on this front can make a huge difference because it puts you back into control of your life, right?

Elise:                Joe, that’s one of the amazing things about nutrition.  You said it beautifully.  You had no choice, you didn’t choose to get cancer, but you can choose the way you’re going to live your life in the future.  You can actually control the food that you’re eating to minimize your risk of cancer recurrence, which I think is amazing that nutrition can be that powerful, that it can have such a profound impact on our health.

Lauren:            Yes, the other thing that’s really exciting for us as dieticians, Joe, is that there’s certainly lots of advice depending on the cancer diagnosis that you’ve had, as to different types of foods and nutrients that are most beneficial for you to reduce, not just your risk of cancer recurrence, but reduce the risk of your cancer recurring.  The advice that we might give someone who’s finished their treatment for breast cancer, could be quite focused on looking at their alcohol intake and their intake of antioxidant-rich foods.  If we compare that to somebody who might have had treatment to their throat cancer, we know that there’s strong evidence that increasing their intake of particular vegetables is particularly key.  Depending on the different cancer types, there’s different nutrients and different foods that play a really key role.

Elise:                Lauren and I had a great time when starting our business, doing comprehensive literature reviews of all of the different tumour strands and also, nutrition interventions and building some really robust resources to give to our patients, so that they had specific information and interventions that they could implement to reduce their risk of recurrence of their specific cancer in the future.

Joe:                 Yes, that’s fantastic that you guys are doing this work that is very targeted towards folks in this specific situation they are in.  I was wondering if you could share top three strategies that someone could incorporate into their daily life.  Having gone through cancer treatment.

Elise:                Absolutely, so first and foremost is, eat more plants.  Load up your plates with heaps of non-starchy vegetables, so things like spinach, tomatoes, mushrooms, I could go on forever.  There are heaps and heaps of non-starchy vegetables.  They’re not only really rich in fibre but really rich in powerful antioxidants that actually help to protect ourselves, which are really important in the context of reducing your risk of cancer recurrence in the future.  They are also quite low in kilojoules and also fill you up.  If you have a diet that’s rich in plants and vegetables, you’re much more likely to be of a healthy weight.

Fruit, as well, so aiming for two pieces of fruit per day, again, that’s to ensure that you’re getting the valuable micronutrients, vitamins, minerals, antioxidants, and fibre, as well.  Another food group that we love is the legumes, lentils, and pulses, as, again, they’re really rich in fibre.  They also contain a particular starch called resistance starch that actually helps to nourish out gut microbiome.

It acts as a food source for the good bacteria that live in our gut, which we know has a really positive impact on our immune system, but also keeping our gut nice and healthy and reducing our risk of bowel cancer.  We always recommend eating the rainbow, so the more vibrant colours of the fruits and vegetables, the better.

Lauren:            That’s number one.

Elise:                That was a long one, sorry, guys.

Joe:                 Perfect.

Elise:                That was a very colourful one, I loved it.  I’m going to go a bit more of what not to do.  Number two I would say to be to try and limit your intake of processed foods.  In particular, processed meats.  If we think about processed meats, we think about ham and salami, bacon, hot dogs.  What we know is that having an intake of processed meats of any amount, but particularly of a high amount, can increase our risk of colorectal cancer and damage to our colon cells.

We would encourage you to minimize your intake of processed foods, processed meats, but also takeaway foods and packaged biscuits and cakes that are often prepared with particular types of fats called trans fats, which can increase the levels of inflammation in our body and can increase our risk of health problems.  Number one, eat the rainbow and include those beautiful legumes, but number two is trying to minimize your intake of processed foods.  What’s number three?

Lauren:            Number three, I think we’ve spoken about this quite robustly throughout this podcast, but it’s achieving and maintaining a healthy weight through proper nutrition but also complimented with exercise, as well.  Joe, you’re a perfect example of what a good approach of a really good exercise program and fabulous dietician, how that can really help to improve your symptoms and make you feel better and ultimately improve your health outcomes.

Joe:                 Yes, that’s fantastic, guys, I love this advice.  Talk to me about alcohol because I think it’s something, again, that you touched on, that might even affect cancer recurrence for some cancers.  What’s your advice on this front?

Lauren:            Yes, there certainly is evidence that alcohol consumption at higher levels can increase the risk of certain types of cancers, in particular, we know that if somebody has undergone treatment for breast cancer, there are particular recommendations to reduce alcohol intake to below that of what the general population would be recommended.  Alcohol, unfortunately, can cause damage in our body, which can predispose us to health concerns of all types, cancer being of them.  The recommendations for alcohol intake for a cancer survivor would be to aim to have no more than two standard drinks per night and to have two alcohol-free days per week.

Elise:                We actually try to add on an additional goal for our patients, I usually say aim for three to four alcohol-free days a week.  just to improve your health, but also reduce your risk of chronic diseases.

Lauren:            Yes, the other thing that’s important to know is that certainly in the case of breast cancer, those recommendations are lower.  It’s actually recommended to have less than one standard drink per day in breast cancer.  About half a drink is the maximum recommended intake after breast cancer.  We know that people live a life and balance is really important.  While these recommendations are certainly worth striving towards, it’s not going to be achievable in every case all the time.  That’s something that’s important to understand in the context of your whole world and your whole life.  Any progression towards that recommendation is going to benefit your health.

Joe:                 Yes, I’m really glad that we keep coming back to this theme of finding the right balance.  I think it’s no use and I know we’ve talked about this before.  It’s not use of just doing something where you’re forcing yourself to do it because it’s not sustainable, it’s not going to stick and ultimately, you’re just going to feel like you’re torturing yourself.  Whereas, I think if you’re setting yourself some goals that are specific to you and your life, and I think it is important, of course, to have someone like yourselves to guide the person through it, I think it’s really important for you to find a sustainable way of living a healthier lifestyle that isn’t some pretty picture or isn’t some imaginary thing.  It’s very real and tangible for you and where you are.

Elise:                Look, Joe, we don’t expect someone to go from drinking a bottle of wine every night with dinner, to go to not drinking at all.  As you mentioned, it needs to be short and small attainable goals towards the recommendation.  We don’t want you to go cold turkey.  We want you to enjoy your life, but obviously working towards those recommendations.

Lauren:            One thing, Joe, you alluded to multiple times in our conversation is that it’s so important that those goals are not our goals, not the dietician or the doctor or the exercise physiologist goals, that it’s your goal as the individual that’s going through this.  You’re only going to change your behaviour if you’re motivated to do so.  If you come into our office and say, “This is what I eat, this is what I drink.  Don’t touch what I drink because I’m not going to go there, but you can improve my health through what I eat.” Great, then we’ll work in that space.  Otherwise, there’s no point us providing advice that doesn’t fit into your world.

Joe:                 Yes, absolutely, I love that because I totally agree with you.  I think there’s a huge difference between what you need to do and what you want to do.  I think we all know that we need to do so many things, but it really comes down to what you want.  If you want something, then you’re really going to put the effort into it.  You’re really going to strive to achieve that.  We all know that we need to do this, we need to do that.  It’s important to focus and do the things that are right for you.  Sometimes it’s all about reaching out and finding I think someone like you guys to help to facilitate that process.  I guess if someone wanted to work with you individually, whether that’s face-to-face or online, so how would they find you?

Elise:                Yes, no worries, Joe, we’d be very happy to hear from anyone.  People can reach out to us certainly via our website, which is: www.oncorenutrition.com.  Spelt: O-N-C-O-R-E… nutrition.  The email address, our phone number, that’s all available on our website there.  Certainly, we’ve got two soon-to-be three locations in Melbourne that we practice out of, but we also offer phone consultations through our tele health service all across the world.  It doesn’t matter where you are, what time zone you’re in, we’ll find a way to be able to support you if that’s something you’re interested in.

Joe:                 Fantastic, thanks so much, guys.  Thank you for your energy and your time today.  I really appreciate it.

Elise:                It’s always a pleasure, Joe.

Lauren: Thank you for having us.

Lauren and Elise are nutritionists who specialise in oncology.  They share practical actionable advice on nutrition that you can apply right now and in a way where you’re not denying yourself anything, so you are not going to feel miserable, which is so crucial. Here are some things that we cover today:

Oncore Nutrition

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https://www.linkedin.com/in/elise-den-129837149/

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Joe:                 Hello, guys, thank you so much for doing this.  I really appreciate your time.  By the way, I love what you’re doing, I think nutrition is such a hugely important and underrated thing during cancer.  I really want to understand the link between cancer and nutrition.  I want to start with your personal stories.  Like, how did you get into it and how did that connection between nutrition and cancer, how did that come about?  Let’s start with you, Elise, first.

Elise:                Sure.  Look, for me, Joe, I was somebody who was always very passionate about health and fitness.  Growing up, I was involved in a lot of sport, from athletics to basketball, swimming, tennis.  From a young age, fitness and nutrition was something I knew that I wanted to pursue long-term.  I initially decided to do dietetics because I thought that I wanted to work with athletes with sports nutrition.  As time went on, I started to develop a real appreciation for the importance of nutrition and the impact that it can have, particularly in the context of cancer.

For patients not just during their cancer treatment, but also into survivorship as well, so reducing their risk of future recurrence.  What I also found was that these sorts of patients, we can have a huge impact on their life.  I gained a lot of fulfillment and a lot of self-worth through helping these people through one of the most challenging journeys of their entire life.  It was from them that I realised, nutritional ecology was something that I wanted to specialise in, but also to dedicate my working career to.

Joe:                 Yes, that’s fantastic.  I also feel like you guys are also privileged to also be working with real athletes.  That’s for sure, thank you, on my behalf.  Lauren, what about you?

Lauren:            Well, I had a similar experience to Elise, in that I always had a real passion for nutrition and health overall.  My interesting nutrition and dietetics came more about through the science background.  I really enjoyed chemistry and biology and health sciences at school, but I also really enjoy psychology.  What I found through studies was that the use of nutrition as a therapy is not just a biological and a chemical therapy, it’s very much a psychological and a social therapy, as well.  Yes, food is nutrients, food is chemistry, but it’s also our social life, our environment, our psychology and emotions.  Being able to marry those things together in a career to help support people was a no-brainer.  Yes.

Joe:                 That makes so much sense, because that really puts that whole perspective of treating the whole of a person and putting it in that larger context.

Lauren:            Absolutely.  I think Elise and I get a lot of our job satisfaction and fulfilment and enjoyment not so much from the science of the chemistry and nutrition therapy that we’re offering, but through empowering people with knowledge and education to make their own health choices and improve their own health.

Joe:                 Tell me, Lauren, what is nutrition important during cancer treatment?

Lauren:            A massive question, but it is so incredibly vital during cancer treatment.  If we look at any type of cancer therapy, be it chemotherapy, radio therapy, any biological or immune-based therapies and surgery, there’s such strong evidence that nutrition prior, during, and after any of those treatments can significantly improve treatment outcomes and treatment tolerance.  There’s a really strong link between someone being well-nourished before and during their treatment, and their long-term survival outcomes.

Joe:                 Yes, that’s fantastic.  Elise, tell me this, if someone is about to start treatment, maybe they’re about to start chemotherapy or radiation, or maybe they’re going to have some sort of surgery, is there any type of nutritional advice that you can give before they actually get started, because typically there’s a window there?

Elise:                Yes, absolutely.  What’s important to note here, Joe, is that every individual is very different.  As well as every individual being different, every patient’s cancer treatment, diagnosis, also has a huge impact on their nutritional status, but also the recommendations that we’d be providing.  I guess in general, recommendations for someone who would be starting treatment or would be going through surgery is making sure that their muscle mass and their lean body mass is thriving.

The reason for that is, we know that the stronger someone is, the better their outcomes are going to be during treatment, but also post-treatment, as well.  Certainly, we do recommend for a lot of these patients going on some sort of high-protein diet in the leadup to their chemo or radio therapy, also, surgery, as well, just to ensure that we’re keeping their bodies really nice and strong, so that they can tolerate and cope with the treatment well.

Joe:                 Great.  Is that what’s called pre-hab?

Elise:                Yes, absolutely.

Lauren:            Absolutely.

Elise:                What’s really interesting, Joe, is that the presence of cancerous cells in the body can significantly increase our body’s nutritional needs, the metabolic demand.  Simply by having a diagnosis, somebody’s nutritional requirements can increase by 150 percent.  They need to eat for one and a half people before they’ve even started any type of treatment.  That can be a real challenge, when first if that information is not delivered to the person who’s in that situation, but secondly, if they’ve got any type of side-effects that hinder their ability to eat and drink.

Lauren:            What we do know is that a lot of patients actually present to us with side-effects before they’ve even started treatment.  For a patient with tongue cancer, they might have pain when they swallow, or they may have issues chewing.  They’ve haven’t even started treatment yet, so you can imagine how difficult meeting their nutritional requirements are when they’re already presenting with symptoms before we’ve even thrown chemotherapy or radiotherapy in the mix.

Joe:                 Wow, that’s a real eye-opener.  I never really thought about it that way.  I know that you guys are so big on providing information that is evidence-based.  Can you talk about what that is and why that’s important?  Maybe we’ll start with you, Lauren, first?

Lauren:            Yes, certainly.  I think a huge pillar to our care as dietitians is that the advice that we provide to any individual is not only tailored to them, their own personal and treatment plans, their own goals, but certainly it needs to be information and knowledge that’s been well-researched and proven to be effective.  What we know is that there is such a wealth of information available to every man and his dog out there.  It’s very easy to come across information that may not be suitable for each individual.  Elise and I, as dieticians, are very passionate about providing information that’s well-researched and backed up strongly by the highest quality evidence.

Joe:                 Yes, exactly, because I know how frustrating it is to see things that you know are not true.  I remember just going through chemotherapy and I remember being in a bookshop and I remember looking at all of these books that are saying: Stop cancer by eating… I was like, no, that’s not even true.

Lauren:            Joe, it’s so frustrating and so challenging for us knowing that there is so much misinformation out there, which is part of the reason why Elise and I decided to start our own business and try to enter more into the world of the broader public, so that we can be a bit of a voice of reason and provide that information that’s scientifically sound and reliable.

Elise:                Yes, I think where a lot of people out there go wrong is, everybody tries to instil fear in someone, “You can’t eat that, or you’ll die.” “If you drink this, you’ll get cancer”.  Everyone wants to make a huge impact because at the end of the day, that big impact, that scare tactic, that’s what sells books, that’s what gets hits on blogs, that’s what gets the likes on social media.

Unfortunately, ethically, there are a lot of people out there who are putting that sort of information out into the media and into the public and vulnerable people, people who have cancer, are getting hold of that sort of information.  That can be really detrimental.  Not just physically, but also emotionally, as well.  Something that we see a lot of in practice is, people are scared to eat certain foods.  There’s a lot of fear and anxiety around eating.  That’s particularly around a lot of that misinformation that’s out there in the media.

Joe:                 Cool, so let’s dig right into that.  Tell me about some of the biggest myths and misconceptions that really exist around nutrition during cancer?

Lauren:            Yes, I think probably the biggest one that we hear is the concern that sugar feeds cancer.  Joe, I don’t know if that’s something that you ever heard?

Joe:                 Yes, I have.

Lauren:            Yes.  Look, this is an area that we get a lot of questions about, the short answer is, yes.  Sugar does feed cancer.  That’s also a very irresponsibly short answer.  The long answer is, yes, sugar feeds cancer, but so does every other nutrient that we eat.  If you take away sugar, cancer is then fuelled by protein and by fats.  It’s irrelevant whether or not sugar is in the mix.  Cancer, unfortunately, it finds a way to grow.

Elise:                Yes, cancer cells are really greedy.  Their primary source of energy that they prefer to take will always be carbohydrates.  Obviously, carbohydrates are broken down into sugars.  As Lauren said, once all of those sugar stores have run out, it will then start to metabolize fat and protein.  Starving your cancer cells or your cells from carbohydrates or sugar is not always the best answer because it will also be metabolizing your muscle and fat stores, which obviously you need to protect you during the treatment, as well.  A lot of what we find is, a lot of people that try to cut out carbs or reduce any sort of carbohydrate intake, it can actually be detrimental to their long-term out comes.

Joe:                 That’s really important to know.  Is there anything else that comes to mind in terms of things that people get wrong?

Elise:                Yes, so another common misconception is the alkaline diet.  Have you heard of that, Joe, as well?

Joe:                 I’ve heard the name, tell me more.

Elise:                Yes, look, the theory behind the alkaline diet is that cancer cells can’t exist in an alkaline environment.  Similarly, to sugar feeds cancer theory, the short answer to that is yes, they can’t survive in an alkaline environment.

Lauren:            Some of them can, some find a way.  It’s also not necessarily true.

Elise:                Where a lot of that research is, is in a lab or in test tubes.  If we put cancer cells in an alkaline environment in a test tube, they don’t thrive as well.  However, in the human body, that’s very much different to a test tube.  Now, our body maintains a very right balance of our PH, so our acid and base balance.  No matter what we eat or drink, that actually doesn’t have any impact on our acid and base balance, or the alkalinity or the acidity of our body.

Lauren:            Of our bloodstream or our tissue.  What we know is that the food that you eat, if it’s an alkaline or an acidic-based food, it will change the PH of our waste.  Yes, it will change the PH of our urine and of our faecal matter, but what’s really important is that it doesn’t change the PH of our blood system or of our body tissues and organs.  That is so important.  Joe, if what we ate changed the PH of our blood, we would all be so unsafe.  We’d all be hooked up to massive machines in ICUs everywhere.

Elise:                Filtering out all of our blood.

Lauren:            One really frustrating thing when it comes to diets that are proposed to cure or manage cancer, is that they’re often really restrictive and they often irradiate or recommend people avoid really important food groups.  The alkaline diet in particular, for example, is wonderfully full of plant-based foods, and lots of vegetables, which is great.  It disallows fish, it doesn’t allow some nuts and seeds, and grains, which are really valuable for our body’s function overall.  Any diet that’s proposed to cure or treat or manage cancer certainly raises alarm bells, because we know without question from huge bodies of research that unfortunately, there’s no particular food or eating pattern or diet that has been shown to prevent or cure cancer.

Elise:                We wish there was.

Joe:                 What are you tell me, you guys?  There’s no magic wand?

Elise:                No.

Lauren:            If there was, it would be part of our conventional therapy.  It’s really challenging when we’re then presented with people who have been restricting their diet and spending lots of money or putting lots of energy into changing the way they eat, that doesn’t have any impact on their cancer outcomes, but more importantly, it’s financially and socially really stressful.

Joe:                 Yes, exactly because it puts so much pressure on you, pressure that you don’t need when you’re dealing with treatment, because you could be using this willpower to deal with other things, to deal with your treatment or with other things in your life.  It’s really good to know that there is no one-sided solution, like a diet to just really keep you through it, what about supplements or vitamins?  I know that’s also some of the possible misconceptions out there, that possibly we should be eating vitamin C or whatever.  What are your thoughts on this?

Elise:                Yes, that is an interesting question, Joe, because supplements and vitamins are now a very big part of our culture.  Most people that you know will be on some sort of supplements.  I guess where this school of thought is, is that the more supplements that you take, or the more nutrients that you’re putting into your body, the better, and the more nurturing you’re being to your body.  Now, this theory isn’t always correct.  What we do know with supplements is that if they are, particular supplements are taken during treatment, so particularly radiotherapy.

If antioxidant supplements are taken during that time, that can actually interfere and down-regulate the effectiveness of the radiotherapy.  What antioxidant supplements do, now, whilst they’re very healthy and good for a normal person, when you’re undergoing radiotherapy, what the antioxidants do is, they don’t only protect your healthy cells, but they protect cancer cells, which we don’t want.  We actually want the cancer cells to be sensitive to the radiation.  A lot of people don’t know that.

A lot of people are unaware of the impact that these sorts of supplements can be having on their treatment, which is why we always recommend to all of our clients to make sure that if they are taking any sort of nutritional supplements, that they’re discussing that with us and their oncologist, as well.

Joe:                 Cool, so that’s really important to know.  When it comes to just eating well during treatment, what are some of the most important things to keep in mind, I guess some of the rules of thumb, so to speak.  I know, because every situation is different, but what are some of the important things to keep in mind and to focus on in terms of specific foods or eating patterns when you’re dealing with cancer treatment?

Elise:                Yes, look, as we said, there’s a lot of to be said about getting a tailored individualised plan, because every diagnosis and also every treatment will come with their own special requirements when it comes to nutrition.  As a general rule of thumb, it’s very important to try and eat a balanced wholefood-based diet.  What you were talking before about nutritional supplements and different vitamins and minerals, we know that they can often cause more harm than good.  Also, they shouldn’t be required if we’re following a really balanced diet.

There’s a lot to be said for meeting your nutritional needs through real food.  Wholefoods as a priority.  For me, it’s really important to ensure that your body is getting enough protein.  That’s related to the additional requirement that our body has when we’re going through different types of cancer treatment.  Again, the need for protein is often at about 150 percent of what it normally would be.  Not eating for one but eating for one and a half people.  That’s really key to help preserve not just your weight during treatment, but more importantly, your muscle mass during treatment.

We know maintaining your muscle mass preserves your strength, your immune function, your ability to recover after every cycle or every treatment after your surgery.  We know, long-term, it’s really important for your outcomes, survival outcomes.  Also, for your long-term health and making sure you still have a really strong metabolism that’s not going to see you put on weight later on down the track.

Joe:                 That’s huge.  What are some of the best foods when it comes to protein?

Lauren:            Yes, so some really valuable sources of protein most often come from animal sources, so meat, chicken, fish, eggs, and anything dairy-based are really powerful sources of protein.  In particular because they all tend to have what we call a complete amino acid profile.  They have all of the essential amino acids that we need each day in those foods.  There’s also some amazing plant-based sources of protein.

Things like tofu and Tempe, some grains like quinoa, seeds, nuts, chia seeds in particular.  One of the very few plant-based sources of protein that’s got a complete amino acid profile.  It’s really valuable particularly if you follow a vegetarian-based diet during cancer treatment, to chat to a dietician and make sure that you’re getting the right amount and balance of protein across the day.

Joe:                 Yes, absolutely.  What about the situation when you’re going through treatment and it’s changing your taste buds?  It’s affecting the way you eat.  What sort of advice do you have on managing that, Elise?

Elise:                Yes, so taste changes are a really common side-effect generally from chemotherapy.  It can also occur from radiotherapy, as well, particularly if you’re having that delivered to the head and neck area.  Ways to manage taste changes, we usually recommend the addition of extra herbs and spices to help enhance the flavour.  Adding extra sauces, as well, can be a really powerful tool to help mask taste and add a little bit of additional texture and flavour, as well.  For some patients who experience a metallic taste in their mouth, usually we recommend using a cardboard plate or plastic utensils rather than the stainless steel, which can often be of assistance as well.  I don’t know, Lauren, is there anything else?

Lauren:            One thing that can really help is keeping your mouth really fresh and clean just before a meal.  We often recommend cleaning your mouth and brushing your teeth after you’ve eaten.  When you’ve got alternations in your taste buds, having really fresh clean mouth before you start eating can help you make sure that whatever taste profile that you’ve got left, you still get to sense it.

Elise:                Yes, so it could be sucking on mints of a lemon drop.

Lauren:            Doing a mouthwash beforehand.

Elise:                Even some patients have said mineral water can be quite good to help break down any mucus or secretion.

Lauren:            Everyone’s a little bit different in this space, Joe.  In that, some people lose their taste, some people taste every really amplified, or other things just taste like cardboard or metal, or really strange flavours.  A lot of it is based on trial and error and figuring out what works best for you.

Joe:                 Yes, I think it’s also important, to keep in mind, I’ll just throw this in there, that it’s so important to realise that it’s most likely going to go away.  I remember going through chemo and all the things that I loved, like coffee, it just tasted… it was crap.  It was horrific.

Elise:                We always say, what tends to go first is coffee and red wine.

Lauren:            Chocolate I hear, as well.

Elise:                All the finer things in life.  Keep those nice bottles of red for another time.  It will come back.  Buy the cheap stuff now.  You’re a cheap drunk.

Lauren:            Look, Joe, there’s also some preliminary research on particular amino acids and the impact that they can have on our taste buds.  Unfortunately, at the moment there isn’t enough evidence to support the use of these amino acids.  It’s certainly an exciting area.  Certainly, when there’s more research that’s proven and evidence-based, we’ll be recommending that, or at least talking about it and presenting the evidence.

Joe:                 How do you guys keep on top of this stuff, because obviously you have your business, but all of this new research comes out all the time, so how do you keep on top of it and how do you know what’s going on?

Elise:                Joe, we love it.

Lauren:            Yes, we’re passionate.  This is what we’re passionate about.

Elise:                We live it and breathe it.

Lauren:            When one of us finds a new journal article or a new paper, or even a new fad-diet that’s just come out on the internet, we usually send it to each other, have a discussion about it.  We like to write blogs, do research.  I think it really helps that we love what we do and that we’re passionate about it.  I know it sounds corny, but that saying: If you love what you do, you never work a day in your life.  It feels like that sometimes because I don’t mind sitting there and reading papers.  Everyone’s on the couch watching TV or out for dinner, we’re sitting there reading peer-review journal articles.

Joe:                 Yes, that is pretty geeky, guys.

Elise:                We’re lucky we found each other.  That we can get excited about science together.

Joe:                 Yes, so you can geek out together.  That’s pretty cool.  All right, guys.  Next, I wanted to ask you about exercise.  I know it’s such a huge thing, but exercise and movement, they got hand-in-hand with nutrition.  What’s your perspective around that especially when it comes to cancer treatment?

Lauren:            One thing I’ll mention first and then I’ll get Elise to speak to this later is that, the world cancer research fund recently had published a new set of guidelines with a really powerful statement that all cancer survivors, so anyone with a cancer diagnosis, past or present, should be referred to a nutrition specialist in oncology and an exercise specialist in oncology.  Blanket.  Absolutely everyone.  All cancer patients and survivors should have access to dietetic and exercise physiology or physiotherapy care.

I think that just highlights how important nutrition and exercise is throughout the cancer treatment journey.  Both of them are so powerful, not just physically, but emotionally and socially, as well.  Like you said, they marry together so importantly.  Firstly, if you’re exercising, you need to nourish your body well, but also the combination of a good nutrition and exercise routine can really set yourself up for better health throughout your treatment, as well as longer-term minizine risk of any issues in health down the track.

Elise and I are really fortunate, we work really closely with a brilliant group of not only physiotherapists, but exercise physiologists, Pilates groups, yoga groups, that work in the space of specialty cancer care, so that we can continue to provide our nutritional support, but alongside that exercise prescription which is really key to the health of these people.

Elise:                Absolutely.  It’s so important, as dietitians, we work really closely with these exercise physiologists or physios because at the end of the day, our goals will compliment theirs and vice versa.  At the end of the day, that’s what’s going to get the best outcome for our patients.

Joe:                 What are some of the best activities that you would recommend for people during treatment?  Is it yoga?  Is it going for a walk?  What are some of the things that you think are most helpful in that?

Elise:                We’re not exercise physiologists, so we probably shouldn’t be recommending particular exercises, but certainly it’s really important to keep active.  It usually should be what feels comfortable for the patient.  If that patient things that they’re able to go and see the physio or go and complete their exercise physiology session, by all means.  Sometimes when they’re feeling too unwell, too fatigued, it’s important to listen to your body and to take that time to rest and recover.  Maybe just a brisk walk would be appropriate for those days straight after your chemo when you’re feeling a bit crap.

Lauren:            There might also be days, Joe, when you can only make it to your letterbox and then you walk back home.  That’s okay, too.  The simple act of putting on your runners and making it that far is nurturing your body and giving yourself a chance to get out there in that space.  I put it to you, what sort of exercise were you able to manage throughout your journey?

Joe:                 I did walking every night.  It was actually recommended to me by an oncologist.  I would drag myself out, like a zombie, because I would really just stumble along.  I have to say that not only did it make me feel better and gave me more energy, even though it wasn’t necessarily easy, but it also created a habit that to this day, two years’ onwards, I still go for a walk every single night.  It makes me feel good, not only in terms of when I was going through treatment, not only physically that I feel it picks me up, but also gives you a different headspace from lying in the bed.  Also, even when I was in hospital, I remember getting up from the bed and I would drag away my…

Elise:                Your friend the IV pole.

Joe:                 My friend the IV pole.  I would walk around the ward and it made me feel better.  It made me feel like I wasn’t just stuck in bed, that I could talk to people, I could look out the window.  It made a huge difference.  I would highly recommend that.  I think that is aligned with what you guys are talking about.

Elise:                It makes you take on a health role as opposed to a sick role.  That’s a really important mindset to get into, as well.  Look, I think it would be really valuable to – we can certainly put you in touch with some amazing people in the space of the exercise and oncology world that would be great to share their knowledge.  I know that there are areas of exercise that can actually sensitise the body to respond better to chemotherapy and different kinds of cancer treatment.  Hugely powerful space, certainly, like nutrition, it’s underestimated in the oncology world.

Joe:                 Fantastic.  I’d love to take you up on that later.  Absolutely.  Tell me, guys, what happens when eating is difficult, maybe you’re fatigued, or maybe on the other hand, you don’t have enough appetite, what do you do there?

Lauren:            They are really common symptoms that we see very frequently in our practice.  Usually, the easiest strategies to implement is to have small and frequent meals.  Often, after chemotherapy or radiotherapy, or even after a really significant surgery, as you can probably – it probably resonates with you, Joe, trying to tackle a really big meal is overwhelming and can also make you feel a little bit sick.  We usually recommend splitting it up into five or six small meals a day, so that it’s not so overwhelming and so that you can get that little bit extra in over the day.  Often, grazing, as well, is a really powerful strategy.

Sipping on nourishing fluids, so whether that’s smoothies, protein shakes, if that’s appropriate.  Fluids like that, which are, again, give you that little bit of extra energy and protein.  As well, fortifying your meals, so adding extra oils, nuts, and seeds, even adding butter.  Avocado, to help boost the energy in your meals is going to help you, firstly, to get in more calories, but particularly it’s important that you get in more protein.  Adding additional protein sources to those meals, as well.

Elise:                A lot of that, too, Joe, is like you said before, about building habits and building routine.  Often, we do it in a step-wise process, if there’s just no appetite and no desire to eat, step one is to put something, anything in your mouth every couple of hours.  It might be one cracker or one nut.  That’s okay.  We build upon that base.  Ultimately, what we want to try and achieve is small meals often that provide your body with the nutrition you need each day.  It’s really easy to graze across the day, the graze on foods that don’t give you the full nutrition profile that you need.  That’s where building upon that base is really key.

Joe:                 Tell me, guys.  I’m just about to learn the meaning of a new word, what is grazing?  I have this feeling of me going out into the backyard and starting to chew the grass.

Elise:                We’re actually both champion grazers, I would say.  We practice what we preach.  The grazing is just having small snacks or just eating frequently throughout the day.  That might be while you’re sitting on the couch just having a handful of nuts, a bit of fruit here and there.  As opposed to a sit-down breakfast, lunch, and dinner, it’s taking some of that structure away from meal times.  In some ways, the opposite of what we would normally recommend is making your eating a little bit less structured, a little bit more mindless, so that there’s less attention and pressure put on that meal time.  It’s more about grazing gradually and snacking gradually across the day to get enough in, rather than relying on those structured meal times.

Joe:                 I love that because mindlessness is so much better than mindfulness in this…

Lauren:            It’s a lot easier, isn’t it?

Joe:                 Exactly.

Lauren:            Another powerful strategy, Joe, is eating in a positive environment.  Eating with loved ones.  Even when you’re going through treatment, if it’s going out to a restaurant that you really enjoy, making eating and food more of a celebration rather than a chore.  Even enlisting support from family members and friends to prepare meals or put things in the freezer, so that if you’re not hungry or you don’t feel like getting in the kitchen and cooking, that you do have food that’s available that’s nourishing and that’s tailored and appropriate to your needs.

Joe:                 Yes, I think it’s also in a way giving yourself permission to eat what you want.  I remember being stuck in hospital.  The food was all right, but I think after a while, I just really had enough of it.  I remember my wife was sitting next to me and I was like, I just can’t handle any more of this.  Let’s just order take out.  We had someone deliver.  I don’t remember what it was, I think it was pizza, delivered it to the ward.

Elise:                You wouldn’t be the first, Joe.

Joe:                 Yes, sometimes it just works well I think to break it up and give yourself the permission to do whatever you feel like doing right now.

Lauren:            What’s so hard is, you picture a hospital ward and a hospital bed, someone going through really intense treatment, the environment that they’re required to eating in bed, with the tray.  A meal that’s been delivered to them, that is just not ideal for someone who doesn’t have an appetite.

Elise:                It’s not appealing, it’s not going to stimulate your sense.  Certainly, we know through working those environments, when that’s presented for you, even for a health person that’s not going through chemotherapy, it’s not that appealing.

Lauren:            Nobody wants to eat in their bed.  Breakfast in bed, maybe.

Elise:                Maybe on a Sunday, but that’s about it.

Lauren:            Look, we know, Joe, that there’s no culture in the world that advocates for solitary eating.  No culture recommends that you should eat alone.  What Elise was speaking to before was bringing that social element back to food and taking the focus away necessarily from the nutrients that you’re eating and more around the nourishment of your body from a more holistic sense.

Joe:                 Yes, exactly, that’s perfect because I think that brings us to another misconception there, because I think a lot of people feel, I’m speaking certainly about myself at a particular point in my life, that healthy eating, whether that’s during treatment or otherwise, is about denying yourself the foods you love.  Can you speak to that?

Elise:                Yes, that’s exactly what I was talking about before, Joe, about how people want to in order to sell books or get hits, they want to instill fear in the reader or in the audience.  That fear for a lot of people is a sense of control.  People believe that if they restrict a certain nutrient or avoid a certain food that there are actually nourishing their body or doing the right thing in order to help their condition.  Where, it’s actually very much the opposite.  It causes a huge amount of stress, anxiety, and can also fracture relationships, as well.  I’ve had lots and lots of clients who’ve had wives in the room with me when the husband is really sick, in tears, just saying, “He won’t… he’s restricting this sort of food or he’s not eating that.” The stress that those restrictions puts on relationships is profound and can have even more of an impact than the treatment is having.

Lauren:            I think what’s really key is that we focus on the foods that will do you good and that are positive to your health, as opposed to those that are going to impact any sort of negative health outcome.  Yes, it’s important to find balance and not to have your entire diet filled with foods that aren’t necessarily conducive to good health, but we know that much of our food supply is really good quality food.  If we focus on those and the positive impact that’s going to have on our health, it’s a much nicer space to be in.

Joe:                 Yes, exactly, so it’s all about turning around and having a positive mind-frame as you’re dealing with treatment?

Lauren:            Yes, for sure.  Restriction we know, firstly, it’s very challenging, and doesn’t last.  What for?  You’ve got to ask yourself, why you’re restricting that food and certainly if there’s a really strong medical reason or rationale for it, certainly, we’ll support you in that.  If it’s for a superficial meaning or some other advice that’s been provided without real merit, that’s when it can be really challenging.

Elise:                Is it really worth it?  If it’s putting stress on you emotionally and financially, as well as your family, is that restriction really worth it?

Joe:                 Yes, cool, that makes so much sense guys.  If someone wanted to find out more about you, maybe read your blog, or work with you individually, as well, what could they do?

Lauren:            They could absolutely reach out to us, Joe.  We’d love to hear from anyone.

Elise:                We’d love to hear from you all.

Lauren:            Elise and I are very fortunate to have two clinic locations in Melbourne, soon to be three.

Elise:                Soon to be three.

Lauren:            At the moment, we practice out of clinics in Brighton and in Windsor, in Melbourne, and soon to be in Caulfield.  We also offer phone consultation services through our tele-health program.  We’re very accessible for anyone.  We’ve got lots of clients both nationally but internationally, as well.  If there’s anyone that we can support through their cancer journey with nutrition advice tailored to them, we’d be very happy for them to reach out to us.  They can do so either on our website which is: www.oncorenutrition.com.  On Core cleverly spelt: O-N-C-O-R-E.

Elise:                Pun intended.

Lauren:            Certainly, we’re accessible by email, we’ve also got a range of information available on our website, both in the form of fact sheets tailored to different cancer diagnoses and treatment types, but we also write plenty of blogs and articles and have recipes available on our website, as well.

Elise:                One thing we encourage is if anyone listening has any requests or is unsure of any sort of dietary methods, please send us an email because chances are if you’re asking those questions, there are probably heaps of other people out there who also need those questions answered.  Lauren and I would be more than happy to help support you.

Joe:                 Fantastic, thank you so much, guys.  I really appreciate all of your advice and your time.

Elise:                Pleasure.

Lauren:            Thank you for having us, Joe.

Elise:                We’re also really enthusiastic about building our community and providing that evidence-based reliable information to everyone who’s able to access it.  We’d really encourage anyone who’s interested to jump online on the socials to join us, we’ve got Instagram, Facebook, LinkedIn.  We’ve got mailing lists.  We’d really welcome anyone who wants to join our community.

Joe:                 Yes, you guys have a great newsletter.  I think I received a new one today.

Elise:                Thank you.

Lauren:            Do you like our jokes, Joe?

Joe:                 Not really.  I love your recipes, as well.  It’s all cool.  I think it’s great.  You guys are going to make it fun and I think that’s what it’s about.  I think it’s all about combining really actionable advice, but also having the right attitude and mindset, which is so important when you’re dealing with cancer.

Elise:                Absolutely.  It’s an absolute privilege to have had a conversation with you about just that today, Joe.

Joe:                 Fantastic.  Thank you so much, guys.

Lauren:            Thank you so much for having us.

I found out about Stan by reading his book and it really spoke to me because it covers all the difficult topics that come with talking to someone with cancer.  Stan is a really deep thinker who uses his own cancer experience to distill his wisdom into practical ways of dealing with cancer. Here are some things that we cover today:

Stan Goldberg website and blog

“I Have Cancer”: 48 Things To Do When You Hear Those Words by Stan Goldberg

Loving, Supporting, and Caring for the Cancer Patient: A Guide to Communication, Compassion, and Courage by Stan Goldberg

Joe:                 Stan, thank you so much for taking the time to talk to me today.  I love your book: Loving, Supporting and Caring for the Cancer Patient.  Tell me, how did that come about?

Stan:                How did the book or how did my interest in cancer?

Joe:                 Both.

Stan:                Okay.  Well, I developed prostate cancer at 57.  It wasn’t unexpected because my PSAs had been high, and the rectal exam always showed something that was not right within the gland.  I always had suspected it.  When it finally was diagnosed, it still came as a shock, as it does for almost anybody who gets a diagnosis of cancer.  What I started experiencing were the kinds of reactions that I thought were odd from some people and were very genuine from others.

One of the things that kept coming up was when people heard I had cancer and that neither I nor the oncologist knew the outcome of it, was the standard phrase, which was, “I’m so sorry to hear that.” Then sometimes that was the end of the conversation.  Other times, another statement followed, “What can I do to help?” Well, as I started talking to other people with cancer and counselling them, I found that what people said to me wasn’t unique.

That it was something that almost every person that I’d spoken to who’d cancer said, “Yes, you know, good friends will say, ‘I’m so sorry’, then there’s nothing afterwards.”  What I wanted to do was, come up with a book for people who knew someone who had cancer.  Essentially said, there are a lot of things you can do.  There are a lot of things you can start by understanding what someone who has cancer goes through.  Then there are different things that you can learn to do.

Instead of somebody saying, “Jeez, I’m so sorry to hear about what you’re going through”, to have them say, “I’m so sorry to hear what you’re going through and I know that it’s important for you to get out every day.  Why don’t I come here tomorrow at ten, we’ll go for a walk?” It was in many ways as simple as that.  That brought about the book.

Joe:                 Yes, fantastic.  It sounds to me like, I think this comes from my own experience, that most people in your life, your friends, your family, they want to help, they genuinely want to be there for you, but they just don’t know how.  We have to guide them.  Would you agree with that?

Stan:                Yes.  I think it’s a two-point process.  One is, yes, you need to guide them.  The other thing is, what I found is, there are a lot of people that are so afraid of death and so afraid of cancer, that even though they want to help, it’s scary for them to do that.  It’s almost as if I’m going to acknowledge that your life is finite and that I may lose you, what it says, I reflect back on myself.

If I’m okay with accepting death as a part of living, then I can go ahead, I can help you, I can do things that other people may see as impossible to do, in terms of healthcare and other things.  If I am so afraid of dying, that to put myself in contact with you increases my fears, then that person needs to work on themselves before offering you help.  Does that make sense?

Joe:                 Yes, absolutely.  Those people who are uncomfortable, like you said, with death and dying, how do they come to terms with that reality?

Stan:                If I knew that answer, this would be a wonderful world to live in.  If you look back historically, in the middle ages, when death was rampant from the black plague and other things, people accepted death as if that’s just a part of living.  That’s what we do, we die young.  It wasn’t something we’re afraid of because you saw it every day.  I think as we became more civilised, more industrialised, we tried to make death something that was easier to accept.  We didn’t talk about grandma dying, we talked about grandma going to sleep forever.

We didn’t talk about uncle Joe’s death, we talked about uncle Joe going on a long journey.  Instead of viewing the corpses in their natural state, we sent them to special places where they were painted and made to look like they were alive.  We’ve done so many different things to hide death, that it’s not surprising that we were afraid of it.  We put it off to the side.  I think that a way of getting people to be more accepting of death is to have them start talking about it a lot earlier.  It was interesting, I got an email message from a ninth grader in New York City, who wanted to interview me about living with cancer.

I thought, a ninth grader?  How wonderful is that?  Of course, I did the interview.  We spent some time talking.  I said, how is it possible that you want to explore a topic that 95 percent of adults are afraid of discussing.  He told me that his grandmother has cancer and he knows she’s going to die.  He wants to understand it a lot better.  I think there’s hope.  I think the younger we start talking about death to people, the easier it will be for them to accept it.  When I was diagnosed, both of my children were adults, we started immediately talking about my death.

Now, this was 16 years ago.  What I tried to instil with them then is to realise there will come a time when I’m not going to be able to fight my cancer anymore, unless a bus hits me first.  When that happens, they need to accept it.  Until that time, we need to live our lives as if today was my last day.  For them and my wife, that’s working.

Joe:                 That’s a powerful transition, Stan, because I think it’s possibly also a reason why being diagnosed with cancer is such a shock, because it just hits you.  It stays with you, doesn’t it?

Stan:                It does, but it transforms in different ways.  I think when I was first diagnosed and I heard the diagnosis, that you have cancer, and we’re really not sure what the prognosis is.  It was almost I went into shock.  A lot of people really don’t think about emotional shock to be the same as physical shock, but it is.  Both forms of shock just debilitates you.  When I heard that, because my assumption was, cancer, death, cancer, horrible experiences, death.  The analogy just keeps going on and on.

What I learned, not from my cancer, but I learned from the people that I served in hospice is, there are different ways of approaching ideas about the end of your life.  The most important thing that I learned from my patients was that the way that you live will determine how you die.  If I live fearing every day, fearing every piece of food I’m going to put into my mouth, I’m going to die with a lot of those fears.  If I turn that on its head and say, “You know, who knows how soon I’m going to die.

I may not be able to do anything about that, although, I’m trying, but what I can do is, make every day that I am alive work and be meaningful.” To me, that was the big lesson.  If I have to thank cancer for anything, and I’m reluctant to do that, that would be it because it essentially gave me a new understanding of how I wanted to live my life for as long as I have.  I would prefer to learn that from a crazy uncle in a bar over a beer.

Joe:                 Yes, I love that, Stan.  I couldn’t agree with you more, that if we live each day as if it was the last, that really makes a huge difference into how you see yourself, how do you experience your life.  You’re living in the moment and all of those fears and thoughts about cancer and all of those horrible things that might happen, they kind of just go away, don’t they?

Stan:                Yes.  It’s interesting.  I recently wrote an article and it was about complacency and living with cancer.  The reason that I wrote it is, now, for 16 years, my oncologist and I have kept very good tracking of my cancer.  For some of your audience that doesn’t know about how cancer works, there’s a measure called a PSA.  A PSA is a measure of a protein that prostate cancer cells produces.  After you’ve been treated or waited to be treated, the oncologist will look at measures of PSA.  The higher the PSA, the more active your cancer cells are.  The lower the PSA, the less active.

Now, he measures that along with measures of testosterone, the male hormone.  Testosterone is the main ingredient that can fee cancer cells.  The idea is, you keep your testosterone low and if everything is working as it should, the cancer cells PSA will also remain low.  You can live with that indefinitely.  That’s what’s been happening for 16 years.  It’s been this perfect correlation.  Keep the testosterone low, PSA stays low.  Recently, that’s been changing somewhat.  It’s taking longer for the PSA to become undetectable.

Now, when it becomes undetectable, that’s when we stop the injections and we wait until rises and then we start injections again.  We knock it down.  It’s like a heavyweight fight where you have a punch-drunk fighter in there, whenever it’s appropriate, you hit him, and he goes down.  Well, my punch-drunk cancer cells are getting up a little quicker now.  It’s become apparent that it’s taking longer to knock them down.  Not only that, but we think that there are some that are now learning to get their nourishment from things other than testosterone.

That’s the beginning of the next phase of my cancer.  I wrote this article.  Essentially, it was not so much to share with people the stage that I’m at, but rather to have them understand that after a number of years of everything being fine, you become somewhat complacent.  I did.  I was complacent about how I was leading my life.  That changed when we looked at the data and I realised that I probably still have a lot of time left, but I don’t know how much, and I’ve been wasting a lot of it by being complacent about my life.

I wrote the article, lots of response, a lot of people read it.  It was interesting to see the reactions of people.  There were some people who clearly had read my book on being compassionate to cancer patients and had internalised it.  These were not only friends, but these were some acquaintances, these were some people I didn’t even know.  The way they responded was, okay, so let me do this, or let me do that.  Or what can I do?  It was really clear that they internalised the message of the book.

There were other people, and a lot of them were relatives, who still were so afraid of losing me, they couldn’t make that lead.  It was, “I’m so sorry to hear about that.” That’s where it stopped.  I just found it interesting the way people react, how differently they react depending upon what their view of death is.

Joe:                 Yes, I guess it’s almost selfish, right, because when you are saying, “I’m so sorry” and it becomes all about you, not about the person who has cancer.

Stan:                Yes, I don’t interpret it as selfish so much, more so as fear.  There’s so much fear there about their own lives that is hard to be truly compassionate to someone else.  I don’t think it’s selfish.  That’s the circumstances.  That’s the life they’ve lived.  We always bring back into our present everything we were in the past.  Not only the experiences, but the fears, the loves.  Whenever someone says something to me that is not quite right, instead of judging them, what I usually try to do is say, “What’s the context?  What’s the context in which they made that statement?” When I do that, I’m usually much more understanding of their reactions, even though I’d like the reaction that I would get.

Joe:                 Yes, absolutely.  You know, Stan, I had a really good laugh when I read your initial email you sent, I think you sent sometime to your family and friends about being diagnosed with cancer.  What really made me laugh was, their reaction was almost identical to people in my life.  Tell me, how did that all come about?  How did your people react?

Stan:                Well, I look at that email with the culmination of my past life.  Now, when I say past life, I’m not talking about different universes, but my life before cancer.  I was a university professor.  Very rigid.  I analysed everything, whether it was some complex clinical program, or whether an apple was sufficiently sweet for a treat.  I was very structured and very unemotional.  When I received that diagnosis, the response that I should have had was, this is something that’s life-threatening.  You should reach out to people who love you, who I know want to help you.

That would have been the response I would have liked to have done, but I didn’t do that.  I just talked about context, so I responded in the context of what my life had been.  It was structured, it was playing down the seriousness of it.  It was joking, because if you joke about something, then you don’t have to take it seriously.  It was all of those things that minimized the emotional effects of thinking that you may die.  Some people were very glad they received that kind of email because it made light of something that was potentially deadly.

Other people asked, what are you afraid of?  One person was annoyed that I blasted it out to 300 people rather than talking to them individually.  That was the background of it.  That’s why when I wrote this new article, there was no humour in there, there was no deflating the seriousness of what was happening.  I learned.

Joe:                 Yes.  People’s reactions, did that surprise you at the time?

Stan:                You know, it didn’t because I wasn’t concerned about other people’s reactions.  I was still – I don’t know how many weeks I stayed in emotionally shock.  During that time, I just wasn’t concerned.  I wasn’t concerned how my wife and my adult kids felt.  I wasn’t concerned how family.  It was, hey, I may be dying, this is about me.

Joe:                 Yes, absolutely.  Also, I love how you used it in your book, Rashomon, that Japanese classic to describe how truth and reality are really just based on someone’s perspective.  Why is that important during cancer?

Stan:                Well, I think the biggest lessons, at least people tell me, that I’ve taught them, people who I’ve counselled whose loved ones had cancer, is that they don’t understand that living with cancer is like living with a filter.  Then everything that you see is filtered through this lens.  Someone says, “How are you?” Just as a matter of courtesy, and you’re thinking, is something wrong with my skin?  Am I appearing pale?  Someone makes a comment that, “Jeez, why don’t you come over for dinner next week?” You may say, what, doesn’t he think I can handle my own food?  That I can make my own food?

It’s like that not only with cancer, but I found that occurs with a lot of chronic or acute illnesses.  We see the present through our needs and our history.  In Rashomon, which is one of my favourite Japanese movies, you had four people observing a murder.  One actually was the ghost of the guy that was murdered, what they did was, when you heard them tell the judge what happened, it was really clear that each saw the murder through their past history and their current needs.  That I think is one of the most important messages that I could send to people whose loved one is living with cancer.

You can’t assume you understand what they’re going through.  Unless you’re going through it.   It’s a plea for acceptance.  When you don’t understand something that a cancer patient is saying, or it comes out as a terrible criticism or something very negative, step back a moment and think about what their body and their mind is going through.  Living with an illness that they don’t know when it’s going to take their lives.

Joe:                 Yes, exactly, that’s powerful.  It’s also about, I think what you talked about earlier, as well, you touched on, it’s about offering specific proactive help.  Could you talk about some of the things that someone can do to be direct and specific with the sort of things that they can come in and help someone who’s going through cancer?

Stan:                I’ll use the example in the article that I wrote.  I’m a firm believer in traditional medicine.  I will stick with my hormone injections as long as they work, but I also realise that I can do things for myself that fall off of that continuum.  Things such as different supplements, meditations, relaxation, different times and different ways of eating, losing weight.  The list goes on and on.  Now, those are things that I ask people for help I had no problem with that.  When we go out for dinner, people will help me select restaurants where they have food that they know I can eat.

When we go over to parties, people know to always offer me red wine, because there’s more anti-oxidants in red wine than white wine.  There are a whole bunch of things like that.  My son knows that my level of strength has diminished over the years.  He doesn’t even have to be asked to life things, he just will do it automatically.  I think that if you have a loved one or an acquaintance who is going through either treatment or living with cancer, the first place to start is to ask them, tell me what I can do to help.

Very specifically.  I know you’re having chemotherapy next week, and I know that you’re going to be week.  Let me go out and I’m going to shop for you.  Or, things like that.  You’re having trouble organising.  I know it has to do with the medication.  Let me help pay bills with you, we’ll do it every Friday.  There are a lot of things.  There’s a whole list, but it varies from person to person.  I think that’s the place to begin, the two places to begin.  Understand that they’re living in a very different world than you are.  Two, offer to help doing very specific things that will ease their journey.

Joe:                 Yes, that’s great, because it’s like you were saying in the book, that having cancer is a bit like being in a horror movie, when you know that these terrible things are going to happen, but you don’t really know when, so you’re constantly in the state of not knowing what’s going to happen.  Tell me, Stan, what’s your advice with dealing with uncertainty?  What is your advice on living with not being able to predict how things are going to turn out the next day?

Stan:                Complicated question and I will probably give you and inadequate answer, but I start on the premise that life is uncertain.  That there are no permanent things.  Whether it’s items, emotions, parts of my body, or anything else.  We live in a state of impermanence, a very Buddhist concept.  If you really accept that and you realise that whatever you have is going to eventually leave you or dissolve, then you start with the mindset that is different for most people, that want to hold onto everything.  We start with that.

We then say, okay, if the world is uncertain, what can I do to increase my sense of stability or certainty?  I can be very Buddhist in my thinking that everything is impermanent, but that doesn’t help me when I sit at my desk and I’m annoyed that I can’t do something.  What I suggest that people do is, they start thinking about islands of stability, I call them, or islands of certainty.  What things are there in your life that gives you a sense of stability, serenity?  For me, it’s a couple of very simple things.  I get up in the morning at 5:30, I make coffee, I answer emails, I take my dog for a run, I come back, play my flute and exercise.

There are five things that make me feel stable and certain.  It’s different for everybody else.  Now, what I think people can do is, explore what makes you comfortable, explore what makes you relaxed.  Look at those items as things that you do every day.  Some may look at it and call it ritual.  It doesn’t make a difference what it’s called, and how it’s configured, these are your islands that you can hold onto, when everything else is in turmoil.

Joe:                 Yes, absolutely.  You have an interesting take on simplicity.  Could you talk about that, as well?

Stan:                Yes.  As we get older, we accumulate, we not only accumulate things, but we accumulate activities and we accumulate emotions.  We never seem to want to give anything up.  My brother is about to move to the Bay area and he and his wife had lived in their house for about 30 years.  They can’t get rid of anything.  They have to.  It’s this dilemma for them.  I think that when you look at how we accumulate, I think the question is why?

Why do some people become hoarders?  Why is it that I refuse to let go of a woodworking tool that I haven’t used in 20 years?  I think that the answer, at least that I’ve come up with and it may not be correct, is that we falsely believe that holding onto something from the past is going to create stability in the present.  Why else would someone save 25 years of newspapers they haven’t read and stacked them in their apartment?  I think that’s the motivation for why we don’t want to give things up.

What I believe is, when you can start doing that, when you can simplify your life, you can reduce it down to the basics.  To those things that are most essential for your happiness.  For me, I have a couple of rules that I use.  That when I look at something that I’ve written or something in my office, if I haven’t touched it in two years, it probably should be thrown away.  I use that.  The other thing is, I look at what would make me happy?  Whatever will make me happy, I’ll keep.  If it doesn’t, what’s the point?

Joe:                 Absolutely.  That’s a great rule of thumb, I love that.  Tell me, if someone wanted to find your books, find out more about you, what do they do?

Stan:                Well, I have a website, the website is: stangoldbergwriter.com.  On that website, there are about 220 articles that I wrote.

Joe:                 Is that all?

Stan:                For this week.  All of the article either deal directly with cancer or chronic illness or aging or end of life issues.  Essentially, they all roll up into aging.  They’re welcome to read them, there’s no charge for them, they can download them, they can share them.  No problem with that.  All of my books are on Amazon, so they can either find them to see some of the reviews on my website or do directly to Amazon.  I’m also, I was just asked by Arianna Huffington to write for her new website, which is called Thrive Global.

I will be writing articles for them that will also appear on my website.   I’m not working on a new book on aging.  It’s looking at what are the major problems that those of us who are old experience with aging?  What I’ve looked at is, most of the problems have to do with transitioning.  Transitioning from being middle-aged to old is simple, but also transitioning from health to illness to support to loneliness, a whole variety of these transitions.

What I’ve done is, I’ve looked at the work that I’ve done on strategies, ways of which you can solve problems.  To say, okay, how can I use these strategies to solve the most difficult problems of aging?  That’s the book that I’m working on right now.  What I’ll be doing is, on Arianna’s website, most of the new articles that will be published will have to do with aging.  Obviously, tangentially with acute illnesses, like cancer.

Joe:                 Fantastic, Stan, I’m really looking forward to reading that book.  Well, thank you so much for sharing your wisdom and practical advice.  It’s been fantastic, thank you for your time.

Stan:                It was my pleasure.  Thank you.

Hey, this is Joe Bakhmoutski and welcome to Simplify Cancer Podcast! I’ve got a great conversation for you today.  I’m talking to my new friends, Gabrielle and Alex. They have a podcast called Soar Above Cancer, which I love and we have a fantastic chat today about what it’s really like to be a young adult who’s dealing with cancer. Here are some things that we cover today:

Soar Above Cancer website

Instagram – https://www.instagram.com/soarabovecancer/

Facebook – https://www.facebook.com/soarabovecancer/

Instagram – https://www.instagram.com/alexmandarino/

Facebook – https://www.facebook.com/alex.mandarino.12

Joe:                 It’s so fantastic to have you on, guys.  Alex, I really want to start with you first, what was life like before cancer?

Alex:                Yes, so myself, before the time of diagnosis, right before that, I was about 20 years old, so I was in university, I was studying my Bachelor of Commerce degree.  That was interesting.  I was very into my academics.  I was very interested in school and into the business aspect, working as often as possible and on my studies and things like that.  When you’re 20, you have a big social life, so I was trying to hang out with friends as often as possible, go out on Friday/Saturday nights, even physically I was in the gym as often as possible.

I was very active, I was building up muscle.  At that time, in your life, you’re figuring out where you are in terms of what you want to do, in terms of the type of person you want to be, you’re meeting new people, you’re meeting new friends.  It was a very fast-paced lifestyle in a sense.  It was at the time where you feel a little bit carefree and on top of the world.

When you’re 19/20 years old, first of all, you feel like you know everything and you feel like when you plan something out, you feel like that’s what’s going to happen and you’re going to see it through to fruition.  Obviously, at the time of diagnosis, it changes your perspective on things, but prior to that, I was a very active human being.  It was a big drastic change when that happened.

Joe:                 Yes, absolutely.  What about you, Gabrielle, what was it like for you?

Gabrielle:        I was also in university.  Actually, similar experience as Alex, I was 19, I had completed my second year of my bachelor’s degree.  I was like Alex, very involved with school, with friends, focusing on just getting it done and enjoy that life of a young adult.  That, like Alex said, is kind of carefree and really out there.  You get to experience a lot of new things and living on my own for the first time, too.  Then the diagnosis happens.  Then there’s that huge drastic shift that a lot of young adults do live where you might become dependent again and the life just isn’t the same.

Joe:                 Yes, absolutely.  Gabrielle, what was going through your mind when you first found out that you had cancer?

Gabrielle:        I tend to like to think that I was really thinking, “I’ve got this.” I think I was to some degree.  I think I was in denial, too, at first, about how big this cancer experience would actually become.  I like to think that my first initial thought was, “I can do this.” I’ve got this, we can go from there, and whatever happens, I can manage.  It won’t be easy, but I can manage it.

Joe:                 Yes, it’s great that you felt that you could work it out.  Alex, did you feel the similar way?

Alex:                I would say so, but initially, I would say shocked.  I’d say for the first ten seconds or so, I didn’t really know how to react.  Obviously, your parents are in the room, so you want to be strong.  It’s a new experience.  It’s not something you’d feel like you’d hear at any age, let alone when you’re younger.  For myself, I thought it would be maybe easier than I anticipated.  Obviously, the words leukaemia or cancer in general, you think the worst.  At the same time, you think, okay, I’m young, maybe it’ll be okay.

All I have to do is deal with the treatment that they’re giving with me.  It’s almost as if you’re saying, “Here are the tools, now you’ve just got to do this, and you’ll be fine.” My mentality was, it was just a straight line, let’s just focus on the task at hand.  Hopefully, with the support of the people around me, then I can be fine.  At the same time, I was so focused on my life prior.  I think one of the first thoughts was, no, this sucks, I’m not going to be able to stay in school.

Not like, my health is in jeopardy.  Not, okay, now I’m going to lose two years to focus on cancer.  Your priorities, mine weren’t really in check.  It was definitely a whirlwind.  Yes, it was difficult to take at first.  I think my initial thought was, “I can do this, but let’s at least reach out to my support system and let everybody know what’s going on.”

Joe:                 Yes, absolutely.  You mentioned that your parents were there, and you were trying to not freak out for them, as well.  What was it like with your family and friends?  Did you feel that you had to behave in a certain way?

Alex:                Yes, it’s tough because I think you feel like you have to become – be the same person that you were initially, because when you get all of this information, I know one of the first days everybody came in, the doctor, the new dentist I might be dealing with, the nurses, everyone with all of this new information.  Me and my parents, we knew all of the stuff we had to do.  Within the first couple of months, we knew how this situation went.

We had a regular routine.  At the same time, not a lot of people outside of my immediate family knew what was going on.  They knew the idea of cancer, but the idea of what comes with that, it’s a very vague image of what to expect.  For myself, I felt a lot of the time, I had to put on this brave face.  I had to be the exact same person.  I didn’t really like to be pitied, so I always tried to be as strong as I possibly could, even though there were some days I didn’t even feel like even talking to anyone.  I did have, one thing I will say, an amazing support system.  Some of the closest I’ve ever felt to my family.

They were, by far, the part that made it the easiest for me to actually go through this experience, but I know a lot of the times I felt like I had to be the same strong person.  I had to be as confident as possible because I didn’t want to look weak at any point, which is hard because there are some good days and there are some bad days.

Joe:                 Yes, absolutely.  Sometimes to pull yourself together and you don’t really know what to say.  Gabrielle, what about you, how did you react with other people?

Gabrielle:        I was really open about my cancer experience.  I’ve always been, and I continue to be because I think it’s important to share that.  I had the misfortune to go through it, through a lot of it.  For me, it was important for me to just be open.  By being open, I think it allowed other people to be a little bit more comfortable with the experience, too, which allowed them to be a little bit more present in my life.  When you’re diagnosed at 19, you have family who’s more than amazing and able to show up.  They know how to, and they just love you unconditionally, so they’re able to show up.

When it comes to your social life, you’re 19 and no one really knows how to react.  By being open and really capable of speaking on the subject and being comfortable.  I used to be able to take off my scarf and I didn’t have hair.  I just felt really comfortable talking about it and being with that experience that I think helped me cope within my social group and let them in to that experience that was new for all of us.

Joe:                 Yes.  Absolutely.  When you were going through treatment, did you know anyone else who had cancer or especially young adults?

Gabrielle:        We have a wonderful community here in Canada.   Alex, you’ll be able to speak to that, too, I’m sure.  We have an organisation called Young Adult Cancer Canada.  They are absolutely amazing.  They have local chapters in the major cities, as well as they do retreats and a conference and there are online forums where we get to chat.  I wasn’t very active with them from the start, but as I went along, I did meet some people through that website.

That’s actually how Alex and I met.  That was a huge support.  I think it’s important to be able to talk to other young adults that are going through that experience because it’s such a unique perspective on the entire experience of cancer.  I’m sure, Alex, you have more to add about YACC, but from me, that was really key when getting in touch with other people who just understood what I was going through.

Joe:                 Yes, absolutely.  YACC, what a great acronym.  Alex, what was it like for you, man?

Alex:                Yes, I didn’t know anyone going through the actual experience, especially when I first started, I think I knew one person who I used to go to school with who had lymphoma at one point and went through the experience.  I had reached out to him when he was going through it, I think a couple of years prior to me.  It was just, I hope everything’s okay, everything is going fine with you.  If you need anything, let me know.  It was brief.  Then when I had it, I was in this by myself in terms of the actual cancer community.

Then similar to what Gabrielle is mentioning, I found YACC, Young Adult Cancer Canada.  The founder actually reached out to me about a month into my treatment.  I just wasn’t listening.  I wasn’t having it.  I didn’t really want to deal with any other people with cancer.  I felt like, okay, I don’t really want to have to talk about this like a social support group.  I think I’m just going to focus on my friends, maybe I’ll just push through this and then in two years I’ll be fine.  It worked but at the end, I said, okay, I met someone through the hospital that I went to in Toronto, Princess Margaret Hospital, so it’s the cancer centre there.

I think I met someone who was going on their last day.  We talked for a little.  I found them on the YACC website.  We started chatting.  She said, “Do you know what?  You should just come out to this program and just meet some of these people.” That was my introduction into YACC.  From then on, I met like 100/150/200 people around who are similar in age, it’s about 18 – 39 years old, that are going through it.

You can talk to them about anything, they have the survivor conference every year where about 100 people come in and it’s like a two or three-week activity, conferences, all that fun stuff.  Afterwards, I felt that community and I was able to talk to people about everything.  Initially, I didn’t really know a whole lot of people, so it was difficult, but once you find that calling, it was fantastic.  I always recommend getting in touch with people going through the same thing because it’s really a good shoulder to lie on.

Joe:                 Yes, absolutely.  I really regret not having that support system, as in these people going through the experience.  In a way, it was meeting this one guy at the hospital, which was a really fantastic experience, because I guess no matter what support you have from family and friends, there are still times where you feel like, and you feel confused, when you feel alone.  Did you ever feel like that?  If so, what did you do then?

Alex:                Well, I know for me, there are always times you’ll feel alone because if you have your family and friends, like you said, they’re a support system, but it’s not first-hand, it’s something that you have to experience, when you’re feeling sick or nauseous or mentally drained, it’s something that you’re dealing with, not everyone else first-hand.  You have to search inside yourself and deal with it.  For myself, I just try to keep busy, I would find a book to read, or I would find somewhere to escape reality, put on a movie, go for a walk, clear my head.  I like being by myself, even now, when I like my alone time.

I think a lot of that stems from the cancer experience itself.  When there are times I just felt alone, either I would just deal with it in the sense I would find a way to escape reality through fiction or through reading a book, an activity, trying to work out in some capacity.  Then in times where it was just too dark and too difficult to deal with myself, I’d probably try reach out to someone in my family and chat with them, or meet with a friend I hadn’t seen in a while and say, “Do you want to grab a coffee?

Just go out, chat about life and see where that conversation goes?” There are a lot of different ways to deal with it, but there definitely were times where you feel alone.  Even when you have so many people around you.  Unless you have someone, who knows exactly what you’re going through, sometimes there are certain aspects of like that you just can’t really talk about.

Joe:                 Yes, absolutely.  Gabrielle, how did you try to find that balance of being by yourself and being with other people?

Gabrielle:        Yes, I think I’m very introverted, so I think a lot by myself, I reflect a lot.  That’s a time that I really do need to process the experience.  I’ve done it through the entire experience.  I continue to do so now, considering that it’s not necessarily over after treatments are.  There’s stuff to deal with afterwards, too, so I continue to be really reflective in enjoying that time by myself, where I do get to reflect on everything that’s happened and figure things out for myself.  At the same time, I really enjoy having that support from others, so my family is great.

Of course, they offer me most of the support that I get.  As well as socially, I have friends who have stuck with me through the entire process, who understand my story and who are still around, which is really nice.  Of course, Young Adult Cancer Canada has offered me an opportunity to be social and receive that support from others.  Balancing it becomes easy when you have such a great support system who allows you the time that you need to be alone and to reflect and to process, but also welcomes you with such open arms when you need to chat and to get your mind off of things.

Joe:                 Yes, that’s a great balance.  In terms of reflecting, do you have your own process, what do you do?

Gabrielle:        I’m just a thinker.  I just think all the time.  That’s in my nature and my character.  I do have a blog and Alex and I have the podcast, where I do get to reflect a lot.  I had stopped blogging for a while just because things were getting hectic in my life.  I’ve started again.  I think that’s one of the best ways for me to reflect on things I did to put my thoughts on paper.  Put them in an organised fashion, because in your head they’re never really that organised.  We get to share it either on the blog or with Alex and our guest.  That’s always a lot of fun.

Joe:                 Yes, that’s great.  Alex, what about you, man, do you do things apart from the podcast, like in some structured way?

Alex:                I had started actually about eight months ago, writing on a Microsoft Word document and I wanted to start a book, like an autobiographical piece about what I went through.  Just for the two and a half, three years, of right before cancer, and cancer itself and going through.  Then a little bit of right now.  I got about 40/50 pages in and then I took a hiatus, based on, Gabrielle said, you get busy, you have other stuff going on.  Then sometimes you take a break, sometimes it’s hard to get back into it.

It’s been something I’ve been meaning to get back to because it is good to reflect and I want to be able to write out and discuss many of the points that I went through, whether it’s good, whether it was bad, trying to piece together a lot of ideas and advice to the next set of cancer survivors that are going through the things that they have to go through.  It’s not something I was working on recently, but it was something I was working on last summer.

It’s something that I really do want to get back to because it helps me get some peace of mind and some closure on the experience itself.  It obviously, when something maybe comes out and they can put something together, if I can actually publish a book one day, then it would benefit the kind of people going through cancer in a young adult sense, and even maybe when you’re a little kid or maybe older.  A lot of the advice and a lot of the lessons are universal.

Joe:                 Yes, it’s interesting how your perspective changes, from the moment you find out to the moment when you’re in treatment.  Then now, like, you’re still going through check-ups.  When you were thinking about the book and thinking about it now, how does your perspective change around that?

Alex:                Yes, it’s a lot because when you originally start, I think a lot of people going through cancer just want it to end, they don’t want to have to deal with any of this ever again.  I’m speaking for myself.  I know I just didn’t want to have to deal with anything.  I didn’t want to have to bother talking to anyone about it.  It was just we have the two and a half years, two years, two months, let’s just do it and get on with it.  I didn’t even want to have to write about it or talk about it.

Then when you get either halfway through or near the end, you start realising, okay, obviously, this isn’t fantastic, but I’m learning a lot about myself.  I’m learning a lot about what I want to do in the future.  As much as I don’t want it to be a part of my life, it is actually a part of my life.  It’s something that I should be a little bit more aware of and maybe use it to benefit the greater good.  Even something like Gabrielle and I, and yourself, making these podcasts and the blogs and stuff like that, we do it for ourselves, but we do it for others.

Even writing a book, okay, I get to write out my thoughts, but then I also get to help out people hopefully who get to see this perspective.  Even if I can help one or two individuals, then I’ve done my part to give back.  It makes you somewhat of an advocate for cancer, even if you don’t want to have to deal with the treatment all over again or something like that.  Your perspective changed because it comes a part of your life, a lot of people really just want to give back and they want to help as much as possible.

Joe:                 Yes, exactly, because I guess life is never the same after cancer, right?

Alex:                Absolutely.  It’s completely different.  There’s so much change, there’s so much thought process that goes into it.  What do I want to do in the future now?  Everything changed.  You don’t see like as differently.  There are a lot of clichés that go into it.  Things like, do you know what?  When things like this happens, life is so precious.  Everyone is like, yes, that’s a cliché, but it’s true.  I’m sure everyone can agree to that.

Joe:                 Exactly.  Gabrielle, what about you, what does life look like for you now?

Gabrielle:        My life has changed dramatically since the diagnosis day.  That’s okay, I think it changed for the better and looking back, I think I’ve grown a lot from this experience.  All the changes have been good and have been things that I’ve actually chosen to do.  For example, I was heading to law school, or planning to head to law school in the future before I was diagnosed.  Through the experience, I decided that that wasn’t for me and the lifestyle.

That just wasn’t what I wanted to do.  I’m now in social work and able to work with the cancer population.  Those are all choices that I’ve made that have made life so drastically different from when I was diagnosed, but for the better and that’s great.  Still, today, I think I’m still changing my lifestyle a lot as I go because, like I said earlier, I don’t think cancer is done.  Unfortunately, when you ring that bell or when treatment is over.  I think I’m still learning and still discovering a lot of things about myself that makes life continuously change, which is what life is all about.  Yes, life is definitely very different.  I think all for the better, which is fun and encouraging to hear.

Joe:                 Yes, I think that is exactly one of the most powerful things that people want to hear.  We touched on the fact that there are times when all of us feel lost and alone.  I think it’s important for people at the start of the journey or during the journey to realise that there is life after cancer.  It may be even a better place than where you’re at now.  It’s just knowing that there is this light at the end of the tunnel, right?

Alex:                Absolutely.

Gabrielle:        I was actually reflecting this week because my cancer experience has not been easy, like any cancer experience is.  There’s been a lot of up and downs, especially when it comes to the psychological mental health aspects.  I think that’s one of the most difficult aspects of my cancer experience.  Then I came to wake up this week feeling really encouraged and for the first time, feeling like myself again.

I was really surprised, and it was a wonderful feeling because I never thought I’d really get back to that person and back to feeling this great about life.  I did and it was lovely being able to wake up this morning and I have been trying to think, how can I capture that to give that hope to someone who’s newly diagnosed because you’re going to have hard times ahead.  Look, this moment is coming eventually.  The thing that brought me back to those mornings where there is a light at the end of the tunnel, which is really great.

Joe:                 Yes, absolutely.   What about you, Alex, what was that moment like for you?  I guess if you had a friend who just got diagnosed with cancer, what would you tell him or her about what’s coming that way and there is hope?

Alex:                Yes, well, I think the first thing you have to say is, look, as long as it seems like this is going to be and as dark as it seems.  The worst thing that you can picture, it’s going to get better.  Regardless of that scenario, there’s always a silver lining when it comes to something like this.  There are obviously going to be your dark days, there are going to be your bright days.  Regardless of the scenario, it will get better in some aspect.  You will get used to what’s going on.

You will have the support system, whether you want it or whether you don’t.  Whether that comes in your family, whether that comes in the friends you have around you, whether that is, for us, YACC specifically, or whether that’s some type of support system that is a family of cancer thrivers around cancer survivors that understand exactly what you’re going through.  There’s always a light at the end of the tunnel.  Essentially, if it was someone who I knew, if it was one of my best friends, I’d say, listen, you already have me, personally, for whatever you need.  I know exactly what I’ve gone through.

I know every cancer survivor’s experience is a little bit different.  Everybody goes through something different, and there are a lot of similarities.  A lot of the mental health aspects, the physical aspects are very similar.  Whenever you need help, I’ll be there for you.  At the end of the day, when you are saying, this is how long I have to do the treatment, if it comes back, then I have to go through it again, at the end of the day, you have your support system and it will get better.  That’s the thing that I would like to tell that individual.

Joe:                 Fantastic, thank you so much, guys.  Tell me about the podcast, how did it get started and how can someone find you?

Alex:                Yes, so, Gabrielle, I’ll let you answer that one.

Gabrielle:        So, the podcast was started by me.  I did do almost a year of podcasting by myself.  You can find all of those episodes.  We didn’t delete them or anything.  Then I got joined by Alex, so we’ve been co-hosting for about a year now, which is awesome.  We’ve grown this podcast I think in great ways.  The name of the podcast is Soar Above Cancer.  That came about just because I was tired of just surviving through the experience.

I had done a lot of work around, how can I really create a life for myself and start really living and not just surviving.  I thought that it was a great opportunity for me to get out there and share my story, which is as much therapeutic as it was to help people.  I think it’s for both purposes.  I just fell in love with the process and blogging and all of that.  I really wanted to bring to people who are living through this experience, just tips and tricks and just our stories and the stories of others who come on the podcast, that can really make a difference in their day.

We try to make it weekly, so that people who are going through treatment can listen to it during their treatment days.  Not too long because we understand that half of us, or probably more than half of us have chemo brain, so we can’t concentrate on anything for a long time.  We really try to make it for people living with cancer, so that they can benefit from something for them.

Joe:                 That’s fantastic.  Thank you so much for what you do, guys.  I think that’s fantastic.  That’s what gives people hope and understanding and inspiration to go on.  Thanks so much for your time.

Gabrielle:        Well, thanks for having us on.

Alex:                Yes, thank you.