Simplify Cancer

When you’re dealing with cancer, your oncology nurse is there for your every step of the way – asking you about your symptoms, administering treatment. Your nurse is answering the most pressing questions that you have right now and ultimately, helping you preserve your dignity at a time when you really need it the most.

Right now, we’re talking to one amazing nurse, her name is Natasha and she’s helped so many folks like you and me to get through treatment in the best way possible.  Natasha also does a lot of really amazing work around clinical trials, so we get to find out what that’s really like, so let’s dig in!

Here are some things that we cover today:

ANZUP Trials Group

ANZUP ClinTrial Refer app

Australian New Zealand Clinical Trials Registry

Episode 029: What You Must Know About Clinical Trials Before Starting Treatment

Joe:                 Natasha, it’s so scary to go through treatment, I guess because you don’t really know what’s going on and you don’t really know how things are going to turn out.  Is there really any way to prepare for cancer treatment?

Natasha:         No, I don’t think there is.  Knowledge is important but also listening to your body and getting to know your body and what doesn’t feel right for you and what does feel right for you and gathering that information as much as possible about what’s normal for you and what’s not normal for you.  Trying to do that right from the very beginning.  I think that’s really important, but just being nice to yourself and looking after yourself as much as possible.  You know, I heard someone call it self-compassion, not being hard on yourself and going, “I’ve got to be tough, I’ve got to be strong.”

That’s good to believe that but also, I feel sick because I’m having some really heavy-duty treatment with side-effects and I feel really bad at the moment.  Just not being hard on yourself about that.  Do you know what I’m saying?

Joe:                 Yes, absolutely.  I think it makes so much sense because you do have a tendency or even to put on a brave face and go, “Yes, I can do this.  I’m okay”, when in reality it just wears you out.  You have to balance your normal everyday life, you might be working, you might have a family, you might have friends, you might have everything going on.  At the same time, you’ve got this treatment that explodes into your life.  You have to figure out how everything works and dealing with side-effects.  You have to navigate the system.  You’ve got oncologists and your medical team and how does it all fit together?  Yes, it can be a bit of a maze, right?

Natasha:         It can.  To be honest with you, I’ve been a nurse for a long time, I don’t want to say how long because it will probably be embarrassing for me.  I’m still working it out.  The system is always changing.  It’s not like there’s this static way that things go and then you go, “Okay, now I know how it works, we’re going to okay for the rest of our lives.” It’s constantly changing.

You’ll come back in six months and you don’t call that person anymore, we’ve reworked thing.  Now they’re more efficient and you’ve got to call this person.  There’s just constant change.  There’s change in your everyday life.  There’s change in how your body is responding to treatment.  There’s change in what’s going on in the health system.  It’s a lot to navigate.  You still have to have a job and pay your bills.  You know, be with your family.  It’s a lot.

Joe:                 Exactly.  What advice do you have on dealing with uncertainty, especially for someone who’s going through treatment?

Natasha:         Probably my best advice is to say uncertainty is okay and it’s normal.  If you’re feeling uncertain, that’s a normal thing.  We just don’t know.  We don’t know how you’re going to respond, we don’t know how your cancer is going to respond.  We don’t know what’s going to happen, but we’re going to do our best to get the best for you, the whole way through.  Right from this moment on, we’re going to do our best.

You need to ask questions and ask for help and just do whatever, reach out to us as much as possible because that’s what we’re there for.  I think that would be my advice.  That uncertainty is normal and just get whatever help you need.  Let that sit with you until you start to get some certainty and some grounding on what’s going on, I guess.

Joe:                 Yes.  Absolutely.  That makes so much sense.  As an oncology nurse, do people ask you a lot of questions, do patients ask you questions?  Is that the right thing to do?

Natasha:         Yes.  If anything, I go asking them questions, as well.  People do ask a lot of questions, there’s no question that’s not an unusual question, I guess.  If we don’t know, we know who to ask, or who to get to help.  Yes, we like questions.

Joe:                 That’s good to hear.  Obviously, as a patient, you have aches and pains during treatment, how do you know whether it’s cancer or whether it’s the side-effect or whether it’s something that’s totally unrelated?

Natasha:         Yes, that is one of those things that just comes with experience.  Especially when it’s an unfamiliar ache or pain that you’ve not had before.  We all have our aches and pains, especially as we get older, they become more pronounced.  There’s the normal aches and pains that we get, you know?  Sore knee from walking too many stairs.  Some of our treatments can exacerbate those pains, if you’ve got a little bit of arthritis and you have some treatments, that can actually get exacerbated, that’s normal.

I think it’s just that thing that comes with experience.  You just have to listen to your body and be kind to your body and that sort of thing.  Just get to know yourself, your body is changing.  When you have treatment, all the cells in your body are changing and responding and you’ve just got to learn the new ways, I guess.  Just constantly speak up.  If there’s a pain that’s worrying you, speak up about it, let the doctor assess you, let the nurse assess you, do some blood tests.  Have a scan if people think you need to have a scan.

Just do what you think you need to do.  If your gut-feeling is telling you something’s not right, then just say, “I’ve got this pain, my gut-feeling is telling me it’s not right.” We will listen to that and we will look into that.

Joe:                 That’s makes a lot of sense.  Natasha, you see a lot of people who go through treatment, is there anything someone can do to really go through treatment just in a better way, to get through it in a better shape, mentally, emotionally, socially?  What do you think?  What advice do you have on that front?

Natasha:         Well, there’s so much research out there about this sort of thing.  We’re learning more and more about it.  I think it just goes back to basics of exercising regularly, don’t go crazy.  Just have a walk.  Even when you’re really tired, a walk can just pick up your mood, get out in the sun.  Wear your sun hat and your sun screen and that sort of stuff, but just get outside, get some fresh air.  Eat a nice healthy breakfast.  Do whatever you can.  If you’ve got problems with nausea, try to get a plan in place to help manage that.  Just try to do whatever you can for having a good quality life.  Have friends over, even if you’re feeling rotten, just have people over.  Grandkids or neighbours, whatever, have people over.  Just be gentle with yourself about it.  Yes, I think exercise, good food, good company, I think that’s a pretty good way to live all the time.

Joe:                 Yes, that’s the way with or without cancer.

Natasha:         Yes, that’s right.

Joe:                 That’s fantastic, Natasha.  Look, clinical trials, why are they important?

Natasha:         Well, most of us, for myself and the oncologists I work for and Allied Health team members, the reason we do clinical trials is to give our patients access to more treatments and more modes of care that wouldn’t normally be available to them.  That’s the main reason we do it.  There’ll be some treatments that are new and cutting edge.  If we were to wait until they were normally available on the PBS, that’s not a treatment option available here and now for that patient, so that’s why we do clinical trials.

We don’t always know that it’s going to go well, but most of the clinical trials that we get have had many phases before we actually do them.  They’re really important as part of our health system because they offer an alternative form of treatment.  They also increase knowledge and research.  They help us find better treatments for people and just build layers and layers of knowledge.  There’s also a lot of research that shows that hospitals that do lots of clinical trials actually have better care and better outcomes, their patients usually do better.

I think it’s because there’s always people analysing and assessing how we look after people and evaluating it.  We’re always trying to do things a bit better.  We just don’t get stuck into the same old, same old when there are better options out there, if that makes sense?  There’s certainly a lot of data that shows, if you’ve got clinical trials happening, even if you’re not on a clinical trial, patients do a lot better in those sorts of institutions.

Joe:                 That’s so great to hear.  I think that’s fascinating because that’s a real incentive for people to really consider going with a clinical trial, but also just going to a hospital that, as you say, does clinical trials.  Tell me, as a patient, how is going through a clinical trial different to standard treatment?  Just in terms of dealing with it day-to-day?

Natasha:         Yes, there is the uncertainty, we don’t actually know if the clinical trial treatments are better than what we already do, because of that uncertainty, we have to do a lot more tests.  Keeping a little closer eye on you.  We’re trying to save money, that’s an incentive by the health system, trying to fall in what would be normal treatment and say that we’re not doing a lot of extra tests that costs money, but we keep a much closer eye on you which demands a lot more of you usually time-wise, with us probably calling you and asking you how you’re going?  We’ll do an extra assessment when you come into see the doctor.  There’s just that extra level of time and attention.

There are often extra blood tests involved because we are keeping a very close eye on you.  With clinical trials, they’re very heavily regulated.  We’ve got very strict protocols because historically, there has been periods, like in the 60s where trials weren’t done properly.  Now, we have really strict rules that we have to follow.  That means we’re a bit stricter with our patients because of the strict rules that we’re supposed to be following.  I think that’s probably the biggest thing, is they’re really structured and yes, they’re not as flexible.

Joe:                 I think that’s great because you know that there is lots of structure and process around it.  It’s not just random things that are happening.  You’re not the guinea pig.

Natasha:         No, you’re not the guinea pig.  There is that idea out there, but, no, I think clinical research has become very sophisticated.  Yes, no, by the time they get to us, unfortunately, all of that experimental type stuff has been tested and it’s more about real treatment in large populations of patients.

Joe:                 Exactly and getting real outcomes for people.

Natasha:         That’s right, yes.

Joe:                 As a patient, how do you know if the treatment is working or not, like when you’re going through a clinical trial?

Natasha:         Well, we’ll be keeping a close eye on you with your tests.  It depends on how the trial is designed and what the trial is trying to achieve, but the standard is usually they’ll be blood tests with different markers.  There’ll be scans, they’ll probably be done a little bit more frequently in the beginning.  The biggest way of knowing is if you start to feel better.  That’s how you know if the treatment is working.  Usually, people start to feel better and that is usually a much earlier marker that treatment is working, then the scan.

Joe:                 Cool.  Tell me about the follow-up you do with people because, like you mentioned earlier, that you follow-up sometimes for quite a few years actually, how does that work?

Natasha:         We usually do it for safety, just to make sure there are no lagging effects from treatment that we don’t know about.  Initially, we’ll see people more frequently.  We might see them 30 days after they finish treatment, sometimes we see them 2 weeks, 30 days.  Just very close time periods.  It might stretch out to three months and then stretch out to six months, then stretch out to once a year.  Then we might just find them once a year and say, “How have you been?  Has anything been going on?  Have you been seeing your GP?”

Just to make sure there aren’t any unanticipated consequences.  If there are, we get on top of it quickly rather than it just not being addressed.  A lot of the treatments that are done with a clinical trial are specialised.  We need that specialist vigilant attention, just to make sure everything is okay.  Yes, you know what, I personally think that’s fantastic, because even with a standard treatment, you’ve got regular follow-up anyway.

Joe:                 I think that’s great because personally, going to see my oncologist makes me feel great because I’m going, well, just making sure that it’s all on track.  It also keeps me focused just on my life, living day-to-day, just being focused on the present and living in the now.  What do you think about that?

Natasha:         Yes, I think that’s great.  That’s a great way of looking at it.  It’s like a routine flag of, well, this is where I’m at, at the moment, I think that’s good.  It’s the right thing.  If you get caught up in all the other stuff and it’s great that there’s that, all right, this is where I’m at, and that’s feeling pretty good.

Joe:                 Yes, exactly.  Thank you.  Natasha, do people that you talk to believe that they made the right choice about signing up for a clinical trial?

Natasha:         I haven’t really had that discussion with many people.  I just think it just becomes part of what’s happened.  To be honest with you, I’ve never had any discussions with anyone about what was the right treatment or what wasn’t the right treatment.  It’s like everyone’s got their path their taken, this is the result of that path.  I don’t know.  I can’t think of any time when anyone has said they are glad they did, or they regret it.  I might have forgotten.

Joe:                 I was interested to what you’d say, but now you say that people don’t really have those conversations, it really makes sense to me because when I think back to myself and when I think to some of the treatment choices that I made along the way, I probably don’t meditate on that too much.  It’s happened, and I am where I am.  You just move on, right?

Natasha:         That’s right.  We do take the decision-making quite seriously and making sure that people are making their own choices and they’ve got all the information they need to make that choice.  We take that really seriously.  It’s something that we get trained to do.  I guess people because they’re making their own choices, then that is what it is.  I think maybe if people were being pressured by others to make a choice they didn’t want to, they maybe regret.  There’s quite a structured process with letting people make their own decisions, providing them with the appropriate information.

Even if people do give consent to go in on a clinical trial, that consent is ongoing, so people can change their mind at any time.  If they start on a clinical trial, it doesn’t feel right, and they say, “I’m out, I don’t want to do this.  I want to change to this.” Then that’s what happens.  Maybe people are just making whatever decisions work for them when they need to.  I would hope that’s what we do.  I’m just guessing, but that’s maybe why I haven’t had anyone say that because we certainly have had people who started on clinical trials and just said, “This isn’t for me.  I really want to go to Europe for six weeks.  I really don’t want to do this.  Can we do something else?” That’s totally fine.

Joe:                 Cool.  I think it’s really special for anyone going through treatment, whether that’s a clinical trial or standard treatment, has a nurse like yourself that they can talk to on a regular basis, whether that’s every day or whether that’s every hour, whatever that may be.  To ask questions and to be able to get some comfort and to ask about aches and pains and worries and to get all that addressed.  What do you think about that?

Natasha:         Yes, I’d hope that’s what we were doing.  I’d hope that people thought that we were doing that, because that’s what we try to do.  Yes, I hope that we were there as a resource, to hold your hand when you need someone there.  To high-five you when things are going great and if you need more information, we’ll find the answers for you, do you know what I mean?  It may take us a while, we might need to find out stuff, do more investigations, take your blood pressure, but we’ll find out the answers for you.

Joe:                 Natasha, I think you’re being unnecessarily modest, you guys, oncology nurses, are saviours and yes, I want to thank you for what you do in the world because it’s so important.  We need it.  It’s such a huge crucial role for the patient.  I know that I’ve had a number of oncology nurses that we with me through treatment, it’s been absolutely incredible because I do think it’s different from nursing in other areas, it’s just such an involved thing in a way.

Natasha:         It is very involved.  Yes, because I worked in intensive care for a long time, I loved working in intensive care, but it was a different type of nursing, it is about living in the moment.  It’s hard to explain.  It is a different type of nursing, it’s very rewarding, though.

Joe:                 What’s different?  How is it different?

Natasha:         I just think people sometimes say to me, it must be hard working in oncology.  I just go, no, I’ve got it pretty easy, actually.  It does sound cheesy, but people inspire you every day.  There are people that will turn up for treatment having gotten up at four o’clock in the morning to do something.  I don’t know, human beings in crisis are incredibly inspiring.  To watch them just put their life back into the pieces that works really well for them.  I don’t know, it’s just really inspiring.  People are really amazing.  It’s real or something.

I don’t have the words to describe it.  I’m sure there are some very eloquent people out there that have written about it, but it’s just very real.  Like you were saying, about when you see the oncologist, it just makes you go, okay, I’m in this moment.   I don’t find that I’m daydreaming about other stuff when I’m at work, it’s really about what’s happening here and now, it’s very much like that.

Joe:                 Yes, that’s fantastic.  I really love that because it goes back ways, that it is rewarding, obviously, for you, as well.  Again, Natasha, thank you so much for your time and thank you so much for what you do and the difference that you make.  I think it’s huge as a nurse, in terms of clinical trials and making sure that your people get access to the best treatment available and ultimately, get the outcomes that they want, which is hopefully a cure, right?

Natasha:         Yes, that’s what we try to do.  If we’re not doing it, just tell us, you know?  Just say, I really need you to do this, this is not working well for me.  We really want to do what we can.

Joe:                 Absolutely.  Thanks a lot, Natasha.  I really enjoyed it.

Natasha:         Thank you.  Thanks very much.  I really enjoyed it, too.

I have a really special guest in Sami who is an expert in exercise and cancer who will share why exercise is so crucial during cancer, and how you can do it in a way that really helps you to get the outcomes that you want and also do it in a way that is safe and is really going to make you feel better over the long-term! Here are some things we cover today:

Cancer Wellness For Life

weBuild

Episode 012: Your Nutrition Needs During Cancer with Julie Lanford

Joe:                 Sami, you know cancer and exercise, you don’t think of the two that go together.  Tell me, why is exercise important during cancer and after cancer?  Is it even safe?

Sami:               Definitely, I’m going to address the safety thing first.  The safety and feasibility studies on exercise and cancer have been going on about 15 years now.  We’ve really determined that or nearly every single type of cancer, maybe some of the real rare cancers we haven’t studied in clinical trial, but the safety and feasibility has always been great.  You’ll certainly see an adverse event once in a while but not very often.

I think one of the biggest things that we know about cancer and exercise is that so many of our cancer treatments, or just the experience of cancer, the more sedentary behaviour, just the lifestyle changes and also, the not feeling so good, lead people to be more deconditioned.  Exercise when done correctly really helps combat those side effects.  I think what’s really important for people to understand is, if they exercise, if they improve their strength, their function, it helps them reduced side effects even years after their diagnosis and treatment.

People that don’t exercise after treatment don’t always rebound the same way that somebody that exercises.  Not only is it safe, I think it’s one of the most effective and under-utilised tools.  I think in large part because people are scared.  They’re just not sure what to do, which we understand as exercise oncology people, it is the biggest barrier that we have.

Joe:                 Yes, fantastic, Sami.  What do you do?  What sort of exercise can help you during treatment?

Sami:               I think one of the most important things people need to understand is not all exercise is the same.  I think that’s the exact question we ask.  One thing to keep in mind is that walking tends to be the most recommended or prescribed type of exercise, but walking is really the same muscles as doing your activities of daily living or taking care of your daily activity, making food or getting dressed, etc.  For a lot of folks with fatigue, it’s not helpful for them to dip in the same gas tank and use the same muscles.  We’re really pushing people to resistance training, to build those strength muscles back.

Let’s say you were doing laundry, every single week, you were carrying four or five loads of laundry up the stairs, down the stairs in your house.  Right, then you go through cancer treatment and what happens to that task?  Well, somebody might do it for you because people want to help which is great.  Whatever those lifestyle changes are, and you don’t do that laundry for maybe two months.  When you go back and do that load of laundry, the first time you go walk up the stairs, it’s hard.

A lot times, those strength muscles that you don’t use, you lose, and so we really recommend a lot more of the resistance training type of exercise because that’s actually going to reduce fatigue the quickest and help people get back to their activities of daily living.  Resistance training simply means overloading muscles.  Standing out of your chair might be resistance training for some, just with body weight.  Others, they might need to add five-pound weight or a sack of flour or a milk jug.  Anything that overloads muscles is always considered to be resistance training.  Honestly, the most effective type of exercise.

Joe:                 Fantastic.  Tell me about this idea of prescribing exercise, is it like an individual program that you create for people?

Sami:               It’s always individual because you have to ask people, what do you like to do?  What do you not like to do?  People always say to me, “Well, I don’t want to run.” I’m like, well, that’s good because we don’t really recommend running as the first type of exercise.  We take into account a few things.  We take into account people’s history.  If they’ve never exercised in their life, just them starting to move in a different way may feel different and they’re not sure how their muscles should feel.  They’re not sure how to adjust for what feels like pain, which you and I might know as muscle burn, but they might say, “Why are my muscles hurting?” We take into account that and their preferences, what their availability is?  Do they need to exercise at home, in a gym, at work, in the basement?  Whatever that is.

We also really take into account their cancer, their treatments and their side effects, and anything related to maybe surgical changes.  When you boil all of those things and dump them into a big pile, it does become very individualised, but keeping in mind that we really do prescribe and recommend strength training first.  I always start with, okay, I want you to be as active as possible, but your exercise program is going to be focused on building muscle.  Here’s how often you do it and here’s something that you avoid etc.  Individualisation is key but honestly, the exercise recommendations that we have that are really basic and kind of simple don’t allow or teach exercise professionals how to individualise.

Those are some of the gaps that we’re working on literally throughout the world.  How do you take somebody with certain types of cancer or stages of disease and make it individual?  I think that’s the big struggle right now even for our cancer survivor population, is finding professionals that really look at them for them and not for their cancer.  I’d love to say that we’re really good at it.  I think some people are.  I think that’s the biggest barrier for our survivor population, is knowing how do I find somebody and what do I do?  Or what do I not do?  Because it is very individual.

Joe:                 Speaking of cancer survivors, we have some probably pretty unique challenges, as in, first of all, your body may be deconditioned after treatment, but you’re also worried about late effects and after affects, all sorts of things.  What advice do you have on that front, that is specific to cancer survivors?

Sami:               I think the biggest thing that we really work on is educating a survivor of how important and what exercise is going to do.  I think we all know we should move more, and we should eat healthy, right?  Then what’s to say that I go, I’ll just forget it, I’d rather have my glass of wine and sit around and watch Netflix all day.  We really sit down with people individually and especially our survivor population and explain to them why this is so important.  Everything from reducing side-effects during and after treatment, to sometimes impacting survival.

Or another really great study that just came out recently for cost of healthcare out of pocket, was cancer survivors and breast, prostate, and colorectal, that met the minimum physical activity recommendations per week, which were 150 minutes, that’s about 22 minutes per day.  They had 36 percent less out of pocket expenses related to healthcare.  What we felt was those patients, and this is what the study said, really looked at how in the big picture exercise, just fitting those recommendations impact how that person lives.

Financial barriers are one of the biggest challenges for patients and something that we hear a lot.  Looking at, hey, this is a way that you can improve your life after cancer.  To me, that’s a survivor, someone living well after cancer, that’s the goal of survivorship.  It’s selling that to people individually.  Some people will say to me, do you know what?  I lost all the muscles in my arms, or I can’t get on the floor with my son or daughter, or I can’t take my dog for a walk.  It’s really addressing how are we going to help them get their life back.

For most survivors, they really think that cancer took that away.  Before the cancer, they were living a certain life.  Then the cancer experience happened, and all of these things happened and now, their life is different.  How do we use exercise to get back their ideal life?  I think that’s the opportunity that we, as exercise professionals, need to hone in on and really push forward.  We’re not going to hurt you.  If chemotherapy and radiation didn’t hurt you, I assure you we won’t.  Right.  It’s sad.  People are like, “Well, am I okay?” You’re in chemo right now, I assure you, this is much better.  It’s so true.

Joe:                 Yes, absolutely.  It’s so great that not only exercise makes you live longer, but as you say, it can also help you save some money.  One thing that I personally never realised before starting exercise, is it also gives you more energy in your day-to-day life.  I used to be the type of person who would laugh at people who would say they feel better after exercise.  Now, I can’t believe it, I just feel so much better.  Why does it happen?  Why does exercise give you all this extra energy, right?

Sami:               Well, there are two ways exercise helps.  The first way is that quick way, which is just endorphins.  Those feel-good hormones.  You get the same endorphins when you run into somebody you enjoy hanging out with, or you watch a great show and you laugh a lot.  I tell people that are just not motivated, you know what, before you get off the couch, I want you to pull up your phone or your iPad or whatever and I want you to pull up funny animal videos.  I want you just to laugh for a little bit, it will change your mood in that dopamine response in your brain, now go work out.  If not, you’re just thinking, “I’m so tired.” Those are those endorphins.  I tell patients, that’s what happens in the first few weeks after exercise.  Over time, we really are building up your engine.

I’m not really a great car person, I’m married to a car guy, so I’m going to use a car analogy because I think it suits most people.  It’s like I tell people, I live in the mid-west in the United States, so we have trucks here, right?  If you’re driving your big truck, instead of your V8 engine, we give you some little two-cylinder European car engine.  Your trucks is not going to move as fast or it’s just going to be a slow grind.  If you have that little engine, everything is going to be harder.  If we can build your engine, which comes from exercise as well as nutrition, everything is going to get a little bit easier.

I always tell people, what’s your favourite sports car or your fast car and let’s build your engine to be that sports car.  That makes sense to people.  If they go through this experience of cancer, they also forget what their sports car was like.  Do I believe exercise improves energy?  Heck yes.  We have to start somewhere.  We also need to be mindful that just because you’re motivated doesn’t mean that you should start with an hour a day.  It’s really being smart with that and really talking to somebody about, hey, what’s a great place to start?

I’d rather people get consistent and build up what they do daily before they start increasing their amount per day, or even really their intensity.  Consistency is really a key.

Joe:                 I love the car analogy that you used.  Speaking of nutrition, I know that’s a whole huge area in itself.  What is your take on nutrition and cancer?

Sami:               Really, one of the most important things we tell people is, food is fuel.  You have to eat.  Also, this goes back a little bit to my car analogy, you’re not going to take your car and zip it to the back of your house, get your garden hose, and fill up your car tank, right?  If you put junk in your body, you’re not going to run as well.  While I don’t think there’s a great cancer diet, per se, I think it’s really important to lean on good nutrition, quality foods when possible.  I realise that there are also barriers to getting things that are fresh or even organic.

I tell people, do the best that you can.  Try to eat the least processed that you can.  Protein is actually going to be one of the most important things for people that I work with.  The only fuel for your muscles is really protein.  If you’re eating just carbohydrates, you will get energy from those because that’s a source of fuel for your energy output, but not for your muscles.  That’s probably the number one thing that we push patients, either in the cancer treatment world or even in survivorship or clinical exercise world is, protein, protein, protein.  Sometimes even outside of the clinical recommendations.  Everybody is really individual.  Gender plays a role here.  Pre-existing body comp plays a role.  That’s actually why finding someone that’s knowledgeable is key.  The biggest thing I want to address about nutrition is the concerns that people have related to specifically eating sugar.

While I wish that we could say black and white we knew, because honestly, if we knew sugar caused or fuelled cancer directly, if we had clinical evidence, which we just don’t, it would give us a solution or tool in the cancer world.  We don’t.  However, sugar, sometimes it okay.  If you enjoy it once in a while, have your sweet an enjoy it.  Daily, we really see that sugar is more of an inflammatory.  Also, a lot of our patients have diabetes issues, of pre-diabetes issues, or body composition issues that cause them more insulin production.

I think the big thing that we need to realise is that it’s not helping you feel better.  Do I say not eat sugar?  Well, no.  I just showed you my piece of chocolate.  I think once in a while is good.  Honestly, thinking about food as fuel is really what’s key.  Eating clean, non-processed foods whenever possible is ideal.

Joe:                 Yes, I love this kind of analogy, again, because I think what you’re saying is, you’re using fuel, just in a sense that you only need a certain amount to really keep you going, right?

Sami:               Exactly.  I think that’s where our culture, you know, we really go towards the bigger meals because we think we’re getting more for our money.  Not really understanding what your body needs and what your metabolism or your caloric output is, it puts a lot of us in a bad place.  People struggle with gaining weight.  This clinical evidence is not necessarily that the cancer treatments cause us to gain weight.  Certainly, hormone suppressive in certain populations, whether it’s breast or prostate, or even testicular, all of those populations will lead to loss of muscle.

Based on the treatments because we’re supressing those hormones.  That muscle loss leads to slower metabolism.  What happens if you have a slower metabolism, you can’t eat the 2,000 calories a day that you did before cancer, your metabolism might only burn at 1,500.  Well, if you’re eating 2,000 calories a day, what’s happening to those extra calories?  It becomes storage.  That storage is usually what people complain about.  Although, it’s important to exercise, it’s also important to eat right for you.  That’s actually where sometimes people get lost.  I encourage people if they are struggling, track what you eat for a few days.  Really look at what you do.  I’ve done that.  It’s not always fun and pleasurable to go, well, there you are.

If you really want to make changes, sometimes putting your calories and your foods into one of the apps on your phone or even on the computer, it’s really eye-opening.  Weighing out food for a few days.  Not that you have to do that all of the time, but if you really want to make changes, sometimes you’ve got to get down and dirty and really look at what you’re doing, or what you’re not doing.  I think those are some of the most important things and body composition is helpful for all of us.

Joe:                 Growing muscle helps boost metabolism?

Sami:               Yes, because muscle is the only metabolically active tissue on your body.  Your heart is a muscle, right?  If you think about that, that’s your primary muscle, that’s the most important muscle.  All of your muscles that you use, your arms, your legs, your head, your neck, everything, all of those muscles when you use them, they’re like their own little engines.  They need fuel.  The more muscle you have – think of your big bulky people that you meet; do you know those big bodybuilder guys and how much food that they eat every single day?

Or someone that’s really active, I know rugby is pretty big down under.  We’ve got American football here.  I think it’s really the amount of calories that those individuals eat, but you look at the amount of muscle that they have.  If they don’t eat those calories, they lose their muscle because they’re burning so much every single day just at rest and then also when they’re active.  For patients, we need to really think about what their goals are.  If they’re wanting to gain muscle, and most people really need to gain muscle for strength goals and functional goals, as well as metabolism, we need to keep that in mind.

If a patient, as an example, is underweight, and they start exercising.  I have a really specific talk with them and use the dietician to say, “Okay, you now are going to be burning more calories because you are putting muscle on you and that muscle is active, so you need to eat more.  You can’t just eat what you used to eat.” We have to also be mindful of what adjustments we need to make, as we go.

Joe:                 That makes so much sense, Sami.  Is there anything else that you would recommend for someone to be in good shape mentally, socially, emotionally when it comes to cancer?

Sami:               I think community is really key.  I think a positive community is one of the most important things.  I think finding people that you can just talk to, or just know that they get it makes a lot of sense.  We run a functional fitness program in Kansas City and we have felt that the power of that group is the community.  The people know that the person standing next to them understands the same fears that they have.  I find that putting cancer survivors together and the work that you do with your podcast just makes them say, “Yes, we me.  I totally thought that.”

Or, “I had that same fear and I didn’t know who to ask.” Communities are a really key piece.  I also think finding recovery or enjoyment in life is a really key piece.  We always go, go, go, go, go.  I’m certainly that person.  Then I hit this time point in my week that I’m done, I put my phone down, I put my computer away.  It’s just myself, my family, or my loved ones.  You just do something fun.  I don’t really care if someone texts me or if an email comes in.  I think that it’s sometimes hard to disconnect for people and really focus on that recovery.

It’s one of the most under-utilised things that we have, is taking care of ourselves.  If I don’t take care of me, I can’t take care of others.  I think those are probably two key pieces that we don’t talk about enough, but people should find.  Honestly, I tell people, again, if you’re having a bad day, funny animal videos.  Always funny animal videos.  It’s the way to go.  It’s easy, it’s free, and it’s always fun.

Joe:                 Yes, that’s fantastic, Sami, you give such great advice because so often, we spend a lot of time looking after other people.  Sometimes, especially if you go through tough times, you’ve got to put yourself first, right?

Sami:               Yes, absolutely.  I think that really goes back to just the basis of diet and exercise.  If I’m eating junk just because someone around me is eating junk, then I’m not taking care of me.  I think sometimes it’s hard to say no to something or to turn somebody away.  In cancer, I tell people cancer comes with casseroles.  People want to take care of you.  They’re like, “I’m going to bring you a casserole.” You feel bad, but you don’t really want to eat it.  I’m like, well, why not?  Be confident in taking care of you or tell people what you want.

Be specific.  At the end of the day, we all individually are most responsible for ourselves.  I know that I need to take the time to exercise every day.  I need to take the time to go see people that are fulfilling to me and do things that I love.  I need to eat well and also, I enjoy a good glass of wine now and again.  Really, what is Sami want?  What is it Joe wants?  What are those important factors?  I think we forget that as we go, especially when you go through a cancer experience and you kind of forget who you are.

Joe:                 Yes, absolutely.  That makes so much sense.  Tell us about your exercise program that you’ve got for those folks dealing with cancer.

Sami:               We do a couple of things.  I’ve been doing exercise and cancer for about 15 years.  I started really seeing people way out, like, three/four/five years out of a diagnosis and treatment.  They just were like, “I never really got my life back.  I never really got me back.” Then I started working in the clinical setting and seeing people very early and seeing them in the clinical world, where there are exam rooms and treatment facilities.  I realised that to teach people to move, I need to move with them or show them how to move or coach them how to move.

We started a community-based program that’s a small group program.  We do functional fitness.  Functional fitness is basically exercising that mimics improving everyday life.  Remember my laundry basket example from earlier?  We teach people to do the same exercise that will help the with their activities with daily living, but just living well.  I want them to be able to get something off the floor, get themselves off the floor, put something on the top shelf, carry something heavy.  All of our exercises are based upon those kinds of movements.  We also really work on increasing people’s heartrate, because I want them to get aerobically conditioned, as well.  We do mobility and recovery.

We do all of that in a group setting because it’s more fun as a group and people will work harder if the person standing next to them is also working hard.  There’s this psychological piece of, you look out of the corner of your eye and you think, “They’re doing it, I’ve got to keep going.” We realised the power of the community.  Our community is all different types of cancer.  It’s men and women.  We’ve got everything from pre-vivors, people who have had the genetic mutation gene diagnosed and surgeries, all the way to individuals with advanced illness.  We have a two-time pancreatic cancer survivor, we have a head, neck, colorectal, ovarian.

You name it.  We’ve got a variety of groups.  It really doesn’t matter what type of cancer they have or exactly what their course of treatment or surgeries is, but they get it, because they’ve all been affected by that word.  Our community also extends into caregivers and supporters because we feel like cancer affects everybody.  I think it’s also important for our caregivers to have something to help themselves, because they’re often very busy caregiving.

We measure a lot of outcomes in our program, we measure fatigue, we measure depression, we measure body composition.  We’ve really learned that people that do these exercises really three to four times a week only, for 30 – 45 minutes, they have had significant improvements.  No matter where they are in their stage.  I think it’s the pixie dust, that people should be moving.  I think it’s the community that makes it so impactful.

That’s something that I can’t do myself.  I just built a place where they can come and that’s actually what I’ve done other time.  They show up, they bring others.  They stay, it’s amazing.  I just sit back and smile because I just see how positively it impacts them and impacts me.

Joe:                 That’s fantastic, Sami.  What’s the website?

Sami:               Our main website is: Cancerwellnessforlife.com.  We are actually just opening up a new fitness facility that we’ll own.  We had partnered in another facility.  That new fitness facility, so depending on when your listeners listen, is Webuild4life.com.  That’s actually going to be our fitness-based program of our company.  That gym is going to be opening up here a few weeks in Kansas City.  We had some great opportunities and we’ll get getting some grants to build up some fitness videos.

One thing that I’m really excited about is also to develop some YouTube and online content, because I want people anywhere in the world to be able to get what we do, and to be able to access it, no matter where they are, what time-zone they’re in or what they need.  That’s really one of my biggest goals, is to spread it out.  We’ve got some great funders.  It’s my dream come true, to be honest.

Joe:                 That’s so fantastic, Sami.  Good luck with that.  Thanks so much for your time and thank you so much for what you do in the world.  I think it helps so many folks.

Sami:               Thank you for having me.  I appreciate it so much.  Thanks for great questions.  Have an awesome, awesome, day.

Joe:                 Thanks.  You too.

In her quest for life, Petrea has come through cancer to really find herself again.  She has discovered a unique approach to find peace of mind during the craziness and the certainty that comes with cancer. Here are some things we cover today:

Quest for Life and Petrea King Programs and Workshops

Petrea King Books

Quest for Life – A Handbook for People with Life-Threatening Illness

Spirited Women (for women with breast cancer)

Your Life Matters – The Power of Living Now

Petrea King and Quest for Life Foundation

Episode 036: How To Be More Resilient During Cancer with Michael Carr-Gregg

Joe:                Petrea, the first thing I really wanted to ask you is, when did you first come across cancer?

Petrea:             When I was nursing.  When I was 17, I went into nursing and so I nursed a lot of people with cancer at that time.  Also, before I went into nursing, it’s a much longer story, but I’d grown very quickly 23cm in one year and my knees had started dislocating when I was 13.  I spent three years in hospital having my femurs cut and my lower legs turned out and my tibias cut, and my lower legs turned in.  In those days, they’d just invented portable x-ray machines, and because my bones wouldn’t unite, they sometimes x-rayed me two or three times per week.  I think in hindsight, that might have been the reason why I developed cancer then in my 30s.

Joe:                 Wow, what was that like?

Petrea:             Which bit, being in hospital for three years?

Joe:                 Well, being in hospital for three years and then getting cancer in your 30s?

Petrea:             Well, when I was diagnosed, I knew something was wrong because I was covered in bruises.  I would bruise very easily.  I went to my doctor who referred me to another one.  When I had all of the blood tests, I was actually living in California at the time.  When I had all the blood tests, it came back as my white blood cell counts were completely skewed.  Then I had bone marrow biopsies and finally, I was diagnosed with acute myeloid leukaemia in September of 1983.  I was told that I wouldn’t see Christmas of that year.  My brother had just taken his life, as well, so it was a very painful time for our family.  I have to say, I didn’t feel like I fought for my life.  I’m a little bit against this idea of battles and fighting the disease and people lose their battle with cancer.  I just don’t think that’s helpful.  We use such a warm mentality and yet, this is something within our own body.  Being at war with a part of your body doesn’t sit well with me.

Joe:                 That’s such a great perspective, Petrea.  How did you see it?  How did you react when you found out and how did you deal with it?  That it wasn’t that and it was a part of you?  How did you approach it all?

Petrea:             Well, those three years in hospital as a teenager had given me a lot of time to focus on the deeper questions about existence that I was already preoccupied with.  Why are we here?  What’s the purpose of human life?  How do you know you’ve lived a good life?  Like a lot of people, I had a split façade where I had a highly polished one for everybody outside but had a very private inner life.  I’d also grown up with my mad, chaotic brother who was the one who did finally take his life.  He told me before he was ten that he knew that he had to take his own life by the time he was 30.

That’s when I remember thinking, “I have to grow up really quickly, so I can look after Brendan.” That finally gave me a sense of why I was alive.  I was here to keep him safe.  Then I grew 23cm in a year.  That’s what caused the derangement in my bones in my legs.  Those three years in hospital were fantastic because I got out of school.  I never went back to school.  I got away from my gorgeous brother whom I adored but found very scary.  It got me out of having to be a teenager and grow up, because I just didn’t feel like I was ready to grow up at all.

I lived with this very split reality of being someone intensely private and yet, keeping this highly polished façade for everybody else that I was okay.  After that, I was raped.  I got into drugs.  My brother attempted suicide several times before he succeeded.  I was crippled with arthritis, I used to walk with walking sticks or crutches in my 20s.  Then Brendan did take his life, that was a huge shock for all of us because in the last two years of his life, he was actually really happy.  We all went into being relieved that he was okay.

I became a vegetarian when I was about 17.  I started meditating when I was 17 to deal with chronic pain.  By the time I was diagnosed at 33, I’d been a very strict vegetarian for 15 years.  I’d been meditating for 15 years.  I was already qualified as a naturopath, a herbalist, a homeopath, a yoga and meditation teacher.  It was downright embarrassing to have cancer when I was meant to know about health.  I did still have this very rigid divide between me as a private person and the façade I kept highly polished for everyone else.  I ended up, my mother flew to America, she brought me back to Australia.  I was pretty much bed-ridden straight away.  My daughter came and sat on my bed one day, she was seven.  She said, “Mum, you’re sick.”

I hadn’t told them I had leukemia because I didn’t want people looking at me with coffin-eyes.  As if I was already dead.  My daughter said, “If you need to mediate to get well, I think you should go back to America”, where I was living in a community in California.  I ended up doing that.  From there, I went to Italy because the Swami that I was housekeeper and secretary to there was lecturing in Italy.  It’s a long story, it’s in my memoir now.  I ended up in this little cave outside of Assisi in Italy and that’s where my whole life ground to a halt.  It was a combination of being very sick of grief, of despair.

Up until then, I had never cried.  I kept everything inside.  In the cave, I could no longer keep the tears at bay.  I wept buckets and buckets and buckets.  My first book was called: Quest for Life, but it really should have been called: Sob Your Way to Health.  I think that was probably a better description.  This old priest looked after me.  He didn’t speak any English and I didn’t speak any Italian.  For instance, the first night, he came down into the cave where I was, and he dragged me up the stairs and he sat me at a table.  On the table, there was a meal that he’d prepared for me that had meat in it.

I hadn’t eaten meat for 15 years.  There was a big chunk of white bread.  I had been telling everyone, the whiter the bread, the sooner you’re dead.  There was a goblet of wine.  I hadn’t drunk alcohol or tea or coffee, nothing for 15 years.  I felt that it was more healing for me to be grateful for what had been lovingly prepared for me by a stranger, than for me to say, “I can’t have what you’ve lovingly prepared because of my belief system.” I realised I had constructed all of these beliefs to survive in my life.

It was like leukemia and facing my mortality caused me to let go the structure of all the beliefs that I had accumulated and learned to trust life, which I’d never done.  I do it myself.  I had to learn to trust life.  It was very humbling.  It brought me to a very raw emotional state.  Where I just started becoming grateful for every breath and for sunshine, for butterflies, for leaves, for all the beauty that was actually around me outside in this monastery where I was living in, in Assisi.

Joe:                 Yes, wow, that’s an incredibly story.  Really, having that shock of diagnosis come in, that kind of bridged the gap between the two parts of yourself, in a way, right?

Petrea:             Yes, it did.  It shattered that façade and it allowed me to live a much more authentic life.  When I came back to Australia, I had all the blood tests done again.  This time, they showed that I had zillions of little baby red blood cells.  The doctors said, “Look, you weren’t meant to have a remission, so this one won’t last.” I said, “Well, how long might it last?” They said, “Well, maybe only a few days, maybe a few weeks.” I actually found that more challenging because by then, I had reconciled myself to death.  I had packed up my whole life in this little suitcase, all ready for the big trip.

I had given my children away, all of my possessions.  I’d signed over all my assets to my husband.  I was all ready to go, but then the plane got cancelled.  I was faced with how much do you unpack the suitcase?  How much do you live with any kind of sense of certainty about life?  I rang a friend who owns a very large vitamin company here in Australia.  I had met him during my naturopathic days, when I was studying.  I said to Marcus, “Look, I’m meant to be dead, but I’m not.  I’m in a remission but they say it won’t last.  I’m a naturopath, a herbalist, a homeopath, a yoga, mediation… I don’t know what to do.” He said, “Forget what the doctors said and just go into practice as a naturopath.”

Frankly, I didn’t really want to be a naturopath because I found the whole experience of nearly dying and dealing with grief and loss and a lifetime of trauma and chronic pain, I’d found that a very intense experience.  I did as Marcus said, within the first two weeks, the first woman with breast cancer came in.  The day after, the first person with AIDS came in.  They had both been told they wouldn’t see Christmas, which is what I’d been told 15 months before.  I felt like I’d met my people.  My tribe.

My question to people has always been, what is it that stands in the way of you being at peace?  Now, sometimes it was pain.  Okay, let’s see what we can do with breathing, yoga.  I’m not against medicine.  I’m all for orthodox medicine, but there’s an awful lot we can do to help ourselves in addition to whatever we’re doing medically.  It might have been diarrhea.  I would educate them.  Okay, let’s leave out oranges, orange juice, fried fatty foods, fats, oils, alcohol, fried eggs, cheese, dairy products.  Those are the foots that will increase nausea and diarrhea.  Maybe use some slippery elm and some homeopathic.

We’d get rid of the diarrhea.  Now, what is it that stands in the way of you being at peace?  Those conversations got ever deeper into those fundamental questions of: Who am I?  What am I doing on the planet?  A I living the life I came here to live?  If not, why not?  What am I going to do about that?  Those were the questions that I’d been facing ever since I was a little child.  I found those conversations to be very enriching.  What I began to see, in time, a lot of the people, I’ve worked with over 120,000 people now, through our retreats and one-on-one, which I don’t do now, but we have a very big retreat centre here.  In fact, just behind me, through the wall, there’s 22 people with cancer in a program this week with us.

When I began working with people and they were beginning to find really this deep sense of peace within themselves, they just didn’t die on time.  If they were given a time frame, it’s always three to six, six to nine, nine to twelve.  Doesn’t only work in quarterly installments because they’re talking about a statistical group of people.  They’re never talking about you as an individual.  The people I was working with, some of them are still alive now, when they were given three months to live 30 years ago.

I began to see that they had some characteristics in common.  That’s what all of our programs now are based on, are these characteristics that people have who are the ones that don’t die on time.  What I found, frankly, were that these characteristics were useful whether you were grieving, whether you were dealing with depression, trauma, loss, grief, anything, because they’re about peace of mind.

Joe:                 What are those characteristics?

Petrea:             Well, there are four of them.  They’re called the: Four Cs because each one begins with the letter C.  The first one is that these are people who regain control over their response to life.  This first C recognises when perfectly appalling, terrible, horrible things happy to lovely, gorgeous, fabulous people.  It’s fine to weep about it, rail about it, scream about it, write about it, talk about it.  Until you come to a place where this did happen, and it happened to me.  Given I’m in this situation, what’s an appropriate response, not a reaction?

A reaction is always in the body.  If you think about a time when you were really reacting to something, people say, it’s in my gut or my heart rate increases or my breathing changes or my jaw tenses up, or my shoulders and neck get tight.  A reaction is a reactivation of a physiology we’ve experienced previously that we live again in the present moment.  If you to think about it, when you’re really reacting to something, if you were to ask yourself, how old do I feel right now?  We always feel like a little kid.  We’re literally reactivating the physiology of the four/five/six/seven-year-old and living it again as an adult.  Now, if we keep reactivating the same physiology in which your disease developed, why would it go?  A response takes you into new territory.

We don’t say to people: Take receivability for your life.  We say: Take responsibility.  Your ability to responds to the things that are happening in your life.  That’s the first C, is recognising, where am I reacting?  As soon as you notice a reaction, find ways of settling that down.  You either need to excuse yourself from the situation, you need to take some deep breathing, you need to settle down that reactivation in your body, so that you can more appropriately respond, not react.  Otherwise, we keep doing what we’re always done.  Then we always get what we’ve always done.

The second C is a commitment to living.  This is a little bit more complex.  A commitment to living is to have a deep reverence for your life.  To revere the life that you have.  Frankly, it’s amazing that any of us are alive.  We know that only ten percent of all of the cells in our bodies are even human cells.  The other 90 percent are bacteria and other kinds of little creatures that live in and on us.  This is a whole ecosystem that we’re in.  We can create a toxic ecosystem or a healthy ecosystem.  A commitment to living recognises that the opposite of death is birth, not life.  Life is indestructible, I’ve been with many people who’ve died and it’s obvious that someone leaves.

For me, life is indestructible, love never dies.  That’s who we are in our essence.  This second C shows up in three areas.  It shows up in our priorities.  You’re not your body, but you have a body and you need to nourish it appropriately.  That means to put into and onto your body only the things that belong there.  Now, human beings have bene eating slow food, seasonal, local, organic, whole food for millennia.  We’ve only recently started interfering with our food supply and adding oodles of chemicals into our environment.

The average baby born in the U.S.  today can have up to 200 chemicals in its cord blood when it arrives here, which are these persistent chemicals, which are now in the environment.  We need to get the chemicals out of our food, out of our cleaning products, out of our personal care products.  They do not belong in our body.  Given that the microbiome, you know there’s a kilo and a half of bacteria in our gut, they are super sensitive to these chemicals.  We need to get all of those chemicals out of our environment 100 percent.

You’re not your body, but you do need to nourish it appropriately.  You need to rest it because we’re so into soldiering on.  Your body needs deep profound rest every night, but probably sometimes during the day, as well, if you’re unwell.  You need to exercise your body because it’s a whole system of pumps.  If we’re too sedentary, I’m at a standing desk, I like being at a standing desk, but if we’re too sedentary, then all of those pumps slow right down.  We need to exercise in a way that’s appropriate for us.

We know now, there are lots of research to show that exercise on the day you’re having chemotherapy, radiotherapy is really important.  If you’re oncologist isn’t talking to you about exercise and diet, if you can, find another oncologist because they’re very important aspects.  You’re not your body, but you do have one.  You need to nourish it, rest it, and exercise it.  You’re not your brain, you have one.  The brain is designed to be in service to us.  We need to keep the brain focused in the present moment.

When the brain is focused.  When it’s entrained in the present moment, we have access to insight, intuition, wisdom, humor, spontaneity, creativity, and compassion.  There are all present time qualities.  The moment the brain starts telling us stories about the future, where we fret, worry, anxious, or we regret blame, shame about the past, we create a physiology in accordance with whatever the brain is chattering at us.  We need to stop all of that chatter.  We need to keep ourselves in good company.  Don’t hang out with turkeys.  Not even the organic ones.

Be with people who uplift you, inspire you, encourage you to move in the direction that you want to move in your life.  You’re not your feelings.  You have feelings and there’s a very big difference between I am angry, and I feel angry.  On a scale to zero to ten, I might feel like I’m an eight, but I might not want to speak from it, or act from it.  We need to have the capacity to witness ourselves having the feeling rather than just reacting from the feeling.  You’re not your body, you have one, you’re not your brain, you have one, you’re not your feelings, you have them.

Of course, it begs the question, well, who are we?  For me, we’re consciousness.  For someone, that might be soul, spirit, life, being, energy.  If we want to find the peace that passes all understanding, we need to anchor our sense of self in that which is beyond change.  Your body will always change, even if you make it to 110, it will get saggy and baggy and wrinkly and grey.  Bits will fall off and not work.  You don’t want to anchor your sense of sense if your physical body.  The brain is so active all the time, you don’t want to anchor your sense of self in the fluctuating thoughts and feelings that you have.  To anchor your sense of self in that which is beyond change, is to anchor your sense of self in the energy, frankly, that surrounds us.  We know that the magnetosphere is around our body.  We know through magneto encephalographs, that thought actually starts out here before it even starts up in the brain.

Who are we?  We think we’re our brain, although, when we point to ourselves, we point to our heart.  Actually, we’re in the field, we can live in the field where we can pick up all kinds of information and take good care of our physical, mental, emotional, and spiritual wellbeing.  I’m sorry, this is a little bit long-winded, but…

Joe:                 Fantastic.  Please, go on.

Petrea:             The second aspect of the second C, are issues around communication.  A lot of us are not in communion with ourselves.  We don’t even know what we’re feeling.  Nor do we have the capacity to communicate that skilfully to others.  I know when I was sick, I would walk down the hallway and slam the door behind me and think, “Surely, they know they’re meant to come in and find out what’s wrong.” Of course, I had to recognise that this is not really a very skilful communication, because, for me, to say I need, was a foreign language.  I don’t know how to ask for anything because that’s second nature to me, to do it myself.

To go inside, not to ask for help.  It’s interesting to know that we call this second nature, we say, it’s second nature for me to think like this, feel like this, react like this.  No one ever questions, well, what’s your first nature?  What was there before you took on the beliefs, the anxieties, the limitations, the fears?  For me, cancer or any suffering gives us the opportunity of making the return journey back home to our first nature, our essential nature, and that’s where we have access to insight, intuition, wisdom, humour, spontaneity, creativity, and compassion.  They’re all present time qualities.

We need to improve our communication with others because a lot of us don’t know how to have difficult conversations.  We need to improve our communication within ourselves.  The third aspect of the second C are issues of forgiveness.  That’s usually a five-day workshop, you know?  A lot of people use what happened in the past as an excuse for their behavior in the present.  We have to find a way of putting our wounds into our story.  It’s good to have a story but we don’t want to live out of the story all the time.

I wouldn’t change anything in my story now, but it involved rape and drugs and my brothers’ attempts as suicide.  Finally, his suicide.  I married some very odd people.  I had two beautiful children.  I was in a domestic violence situation.  I had all that time in hospital, chronic pain, I still live with chronic pain since I had knee replacements a few years ago because they shattered all the ligaments in my hips.  We can have a story, but we don’t have to live out of that story all the time.

Forgiveness it not about: I forgive you.  Forgiveness is actually an inner process, whereby, we liberate ourselves from the consequences of having felt wounded in the past.  We no longer reactivate in the present as if we’re still carrying any wound from our past.  That’s what forgiveness is.  I know that’s a nutshell version.  The best description I ever heard was actually at a conference in San Francisco, when a six-foot-five transsexual in a frock just a few seats along from me stood up and said, “I’ve just realised that forgiveness is giving up all hopes for a better past.”

Joe:                 Wow.

Petrea:             Yes, I thought that was fantastic.  It just is.  I could still be sitting in that little cave saying, “It’s not fair that I had a mad chaotic brother, it’s not fair – years in hospital, it’s not fair – rape.  Chronic pain, all of that stuff.” The day came when I realised, there’s no one to blame, there’s nothing to blame, which is incredibly disappointing, I know.  There’s no one to blame, there’s nothing to blame.  It just is the way it is.  Weep about it, write about it, scream about it, write about it, talk about it until you can have a story that you don’t live out of that story.  The third C is the sense of challenge.

We have to make meaning out of the challenges that we’re having.  Illness, accidents, traumas, disasters, they don’t have intrinsic meaning.  It doesn’t mean something when these things happen.  If we define peace, we’re going to have to find a way of making meaning and some people make meaning out of their suffering because they become more compassionate.  Some people volunteer.  Some people go and help somebody else.  Some people change a law.  Some people do all manner of things which helps to make meaning out of their suffering.

I ended up making meaning out of it by creating a safe place where other people could come and have their anguish and their distress received and heard and acknowledged.  Then we educate them about neuroplasticity and epigenetics and all of these amazing things, that show that we’re creative beings and that we don’t have to stay stuck in our story.  The third C is where we make meaning.  The pearl comes about in the oyster because something irritated the heck out of the oyster.  We mostly learn about who we are, what’s of value to us through our suffering.  Not when things are going wonderfully.  Then we need to find a way of making meaning out of it.  Rather than just rushing back to life and not learn anything from the experience.  The fourth C is our sense of connectedness.

That’s connection to our own innate self.  It’s having friends, mates, people that we can be real with.  For some, it’s having connection to land, to country, to the seasons, to the cycles of nature, to the cosmos.  It’s having our sense of place and belonging in the world, so that we are not disconnected from ourselves or from other people, or from nature.  If you look at the opposite of those four qualities.  If you can imagine a person with cancer who feels completely out of control with their life and they can only helplessly react to everything that happens to them, as if they’re a helpless victim of their circumstance.

That their commitment of living is all around, “I’ll be happy at another time when things are different from how they are in this moment.” That they’re not taking good care of their physical, mental, emotional, and spiritual wellbeing.  They are not in clear communication with themselves, not have the capacity to talk to anybody else in a meaningful way.  That they have no capacity to forgive and they keep festering on what happened in the past and letting that gnaw away at their sense of peace in the present.

That all their challenges are overwhelming, and nothing has any meaning for them.  They don’t have any sense of connection to themselves or to anyone else.  I think it’s a good way of looking at the opposite of peace of mind.  That peace of mind is the presence of those four qualities.  It’s as much a physiology in our body as anything else.  Regardless of how challenging, how chaotic, how critical, how difficult a circumstance is, we know moment by moment, we can respond appropriately.

We can do that because we’ve already taken good care of our physical, mental, emotional, and spiritual well being.  We filled up our own inner bucket and we’re giving from the overflow of that.  We’re in clear communication with ourselves, with others, had the capacity to forgive and let go what happened.  That every moment becomes a sacred moment.  Every moment becomes a moment of gratitude.  That we feel the powerful sense of connection to our own innate spirit, to the spirit that enlivens all of creation.  For me, that’s the definition of peace of mind.

Joe:                 Wow.  That is incredibly profound.  I want to ask you, I know this is a big topic, but I want to ask you about forgiveness and what are some of the practical steps to forgive someone?

Petrea:             Well, the first one, really, is wanting to because we get an awful lot of distorted pleasure out of forsaking through our wounds and hanging onto the wounds of the past.  We often think, if only the person could see my perspective, they would be so sorry.  They probably don’t even know they’ve wounded you, or if they’ve done it, they may not even care that you’re feeling wounded.  We don’t want forgiveness to be dependent on the other person understanding our perspective, or even hearing us, because it’s not about them.  It’s a wound that we’re carrying ourselves.

Forgiveness is really a selfish thing that we do to release ourselves from the suffering of carrying this wound within us, where we lie awake, where we fester in it, where we forsake through it, where we try and add fuel to it.  Forgiveness often requires time and certainly, first, the willingness, maybe even to have to have someone there as witness to our story, so that they get us.  We all need someone who really gets us, who gets why we’re behaving, feeling the way that we are.  You may need to find that person who can hear the suffering that you experience.

We may need to weep about it, talk about it, talk about it, rail at it, dance it, sing it, whatever, to get the energy of that moving, so that we release it ourselves.  Then it’s our story but we don’t have to be the story.  It’s good to have a story.  It’s our story that breaks us open to greater compassion, greater understanding and meaning.  Forgiveness is never ever, ever, ever about condoning.  It’s not about saying what happened was okay, it was not okay, but it did happen.

Given the fact that it happened, do you want to stay trapped and give that person or that situation the power to destroy your peace for the rest of time.  Most of us want to be free of it.  Being free of it doesn’t mean that the other person needs to understand anything about your suffering.

Joe:                 Also, what you’re saying is, there’s no simple recipe, it’s really a process that you have to go through to really get to where you want to be.  Another thing I wanted to really ask you was, one of the most difficult things about cancer is this constant waiting.  You’re constantly waiting for the next appointment, for the next test results.  How do you deal with that?

Petrea:             I know.  When I went into remission, unexpectedly, every time a gland would come up in my neck, you know?  It’s back, it’s back.  Or, you know that you’ve got a blood test coming up, or you’ve got a biopsy coming up.  That’s why I think that learning to live in the present moment is really helpful.  That we can talk.  Maybe a support group is really useful.  I’m sure your podcasts, Joe, are really helpful to people, so that they feel like, “Ah, somebody else understands what it’s like to live in this space.” Often times, family don’t.  They don’t always understand what you’re going through.

Hanging out with other people, your tribe, people now travel from all over Australia to come here to quest to – it always touches me so deeply that they travel from all over the country to find a safe place.  Sometimes from outside the country, as well, to find a safe place in which to utter their anguish, their story, to have it witnessed and heard and acknowledged.  Then they’re so open to being educated about all of things that they can do to regain control over their response to the situation that they’re in.  That waiting is part of – sometimes it’s appropriate to say to everyone, I’m having a cancer-free day.  I don’t want to talk about cancer today.

I just want to hang out with family, friends, whatever it is, and be my usual self.  Having cancer is only part of your story.  You may also be a father, a brother, a son, an uncle, you have all of these other roles.  We don’t want to be the cancer patient all the time.  I’m just going to get a little picture off my wall here.  This little girl, Kate, drew me this picture of Garfield many years ago, she said, “I actually drew you two pictures.” She had cancer of the heart muscle, which I’d never come across before.

She said, “I actually drew you two pictures, but I put them on my windowsill and the wind blew the other one away.” I said, “Well, what was in the other picture?” Well, she said, “It was exactly the same as this one, but the hearts were all shattered down the middle.” I said to her, “Well, maybe the wind was telling you, you don’t need to have broken hearts.” She said, “No, Petrea, you don’t understand.  Sometimes hearts have to break before they heal.” She said, “I’ll draw you another picture.” Which she did.

Joe:                 That’s beautiful.

Petrea:             Yes.  Often, we don’t want our hearts to break.  Just before she died, she reached out to the hands of her parents and squeezed them and said, “I want you to love each other the way you’ve loved me.” Such profound words.  I know they always bring tears to my eyes and to other people, too, because it’s a fundamental truth that we all know that what really matters is love.  We need to bring that love sometimes to ourselves because I hated myself.  In fact, I’m not sure where that picture is, but I have another little picture of friends who came to visit me in the cave.

I couldn’t even look people in the eye.  I just felt so awful about myself that I couldn’t stand seeing anyone.  They left this little pile of worm food outside the cave with this little picture, which is the holy worm with a little angel on its side.  People loved me when I didn’t have any love for me at all.  Now, for me, to be able to create a beautiful space for other people, not just people with cancer, we work with many post-traumatic stress and depression and anxiety, loss, grief, all sorts of different forms of suffering because at first, my work was mostly with people with cancer because I’d just been through that experience.

As people started telling me their stories, of course, I had stories about domestic violence and rape.  It’s not that you ever know what the other person is experiencing, but I know what that place of despair, that place of anguish, that place of fear and abandonment is like for me.  I’m not scared to have a conversation now about those things.  That’s very profoundly healing for people to know that.  The moment we can speak it, we’re already more than it.

Joe:                 Absolutely.  How does Quest work and how can somebody find you?

Petrea:             Well, they can always go to our website.  Which is: Questforlife.com.au.  I do a live mediation on Monday evenings and people tune in from all over the world through our Facebook page, so they can access the Facebook page through the website.  We also have once a month, one of our facilitators will touch on one aspect of the program and just unpack it a little bit more.  It might be forgiveness.  It might be dealing with difficult emotions.  It might be having difficult conversations.  All sorts of things.  People can tune into that live.  In fact, they’re all on our Facebook page, where people can go and connect with those at any time.  They stay there.

People can revisit those.  I do regular radio interviews.  Hopefully, all of your people are asleep by then.  There are sometimes podcasts, as well, that’s through the ABC, which is a national broadcaster here in Australia.  I’ve been doing that for 18 years about having difficult conversations and dealing with emotions, all sorts of different things.  My books, of course.  We send my books all around the world.  I think Quest for Life, which is the handbook for people with cancer.  I know there are still second-hand copies available through Amazon in America, but we can always send copies from here.  I’ve written nine books, a couple for children, a cook book, my memoir.

One for women with breast cancer.  One for people dealing with cancer or other serious illnesses.  One about where Kate’s story is.  It tells a story of 25 people, what we learnt out of the experience of facing mortality together.

Joe:                 Well, thank you so much for the time for your insights.  Thanks so much for doing what you do in the world.

Petrea:             Thank you, Joe.  Well, thank you, too, for what you do because I know that will make a big difference to a lot of people.  These podcasts are incredibly valuable for people.  Thank you.

Joe:                 Thanks so much.

Look, I know there are just a million things you need to worry about when you’re dealing with cancer – you have to plan around treatment, worry about side-effects, and keep your family and friends in check… It’s tough, but there are also many solutions out there to make life easier – and that’s what we’re talking about today with Haryana.  Haryana takes her incredible medical expertise and she’s transposing it over the real world, to find better ways of dealing with cancer, from the time that you’re diagnosed to the life after treatment. Here are some things we cover today:

Dr Haryana Dhillon – The University of Sydney

Cancer Council 13 11 20

Question prompt lists for people with cancer – Cancer Institute NSW

Episode 007: How To Use Your Inner Resources To Better Deal With Cancer with Suzanne Chambers

Joe:                 There’s so much great advice here.  I’m sure you’re going to love it.  Yes, Haryana, I’ve noticed on Twitter that you went to the ANZUP Pedalthon, what was that experience like?

Haryana:         It was great.  I went last year but I didn’t ride.  This was the first time I had been riding because I’ve had now two grants from the below the belt Pedalthon, so I went last year and was just a part of a panel discussion.  This year was great because we got out early and did the ride, I had all of the teammates that I had, so we were on the ANZUP dream team.  We had all been funded by the below the belt money.  It was just really nice to be part of that.  It was a great feeling because there were more than 250 riders.  I’m not the fastest rider, so it was pretty impressive when the lead pack went fast.  They were very speedy, and it was tight all the way through.  Until the very end.  It was good.  Great fun to be a part of it.

Joe:                 Yes, that’s fantastic.  What a great turnout, as well.

Haryana:         Yes.  It was.  Good fundraising and I think part of it, I think it was just really nice, we did another panel discussion at the end over lunch, it was just really nice to be able to demonstrate what we do with the funding and how we use it.  We had two people who were looking, one person who was looking at bio markets for new ways of delivering treatments for prostate cancer.  Someone else who was ways of trying to identify how people are responding early on.

Of course, the project that I was doing about the patient experience and the patient reported outcome measures, so trying to incorporate those into clinical practice, so we could pick up earlier what their symptoms are.  Being able to explain to people that’s what we do, and the trials groups is not just about new treatments, but it’s about the whole experience and just trying to help people to be able to live longer, but also live with less symptoms and with a better quality of life, as well.

Joe:                 Yes, that’s fantastic.  Haryana, tell me about the project that you’re going to be working on, about the symptoms, what’s that all about?

Haryana:         There’s been a lot of interest over the last few, well, quite a long time, actually, about trying to incorporate quality of life measures and patient reported outcomes into clinical practice.  It’s been a bit challenging to do that because the measures that we used to need to be scored and then it’s not really quite clear how you might best deliver that information back to the clinicians to make it easy for them, to incorporate that.

A few years ago, there was a principle study where a team in the U.S.  had done this, they actually demonstrated by incorporating patient reported outcomes into routine practice, they increased the survival of the patients in the study, as well.  It seemed that if we were looking after people better and being more responsive to their symptoms and side effects to the treatment, then we were helping them to live longer, as well.  What we’re trying to do it, take an app that one of my nursing colleagues from Queensland, Natasha Roberts, has developed, to make that available to patients with GU cancers and to get them to rate their symptoms once or twice a week whilst they’re going through treatment and when they’re on treatment breaks.

Then we can look to see whether we’re picking up additional information and symptoms that the clinicians aren’t picking up when they’re back in the clinic.  To see whether or not the patients will actually use the app and fill that out, there’s a lot of discussion about whether people who have cancer have got sufficient digital skills and willingness to actually engage in filling out.  We’re using smartphones or tablets to do the questionnaires.  We’re looking at whether it’s feasible for them to do that and then what we learned from that in terms of the symptoms and how we might use that information back in clinical practice.  Ideally, what we’d like to do is to be able to use this type of information as a routine in all of ANZUP’s trials in the future, so we can be a bit more responsive to patients and their symptoms, but also to use it to try to be incorporated into clinical practice.

Joe:                 Yes, that’s really cool, Haryana.  You know, it instantly makes me think that it’s something that might even help people on the level of just being listened to, you know?

Haryana:         Yes, well, I think that’s one of the things that’s really challenging, the time that patients and families have with their healthcare professionals who are looking after them are sometimes quite limited.  They may sense that some of the information that they told to their clinicians because they don’t think there’s time to talk about it.  This may be a way of helping us to overcome that and to actually use those patient reported symptoms to better direct the conversations that clinicians and patients have when they’re together, to make sure that they’re actually addressing the most important needs that people have at that particular time.  That they might not have otherwise talked about.

Joe:                 Yes, that makes so much sense, Haryana.  I know that’s a huge part of clinical trials, is getting a lot of feedback.  I know that’s something that you’re really passionate about.  Tell me, with respect to doing clinical trials, what are, in your opinion, some of the biggest myths and misconceptions that people have about going through a clinical trial?

Haryana:         I think really one of the biggest misconceptions is that clinical trials are only offered at the end of life, or when all other treatments options have been exhausted.  That’s really a big problem for us to try to overcome.  We want people to understand that we have trials right through from prevention of cancer to surgical procedures and supported care, as well as all of the other treatments that might be relevant to someone.  The critical thing about it is that this is actually a really good way that you can ensure that you’re getting the best supportive care, or the best treatment options.

When we do particularly randomized clinical trials, we’re comparing and new or a different sort of treatment that we think might be better than the standard treatment to what might be considered the best standard care.  That standard of care is agreed on by all of the clinicians who take part in the study in the group and who are members of the group.  You can be certain that you’re getting the best treatments that you would be offered outside of the clinical trial, as well.  Plus, the fact that you also often have slightly more frequent monitoring visits and follow-up because we wanted to see and track how you are performing or how the trials are going, the treatments that we’re looking at and how the trials are going.  You have regular contact with your clinician and the research team that help to support them in the hospital, as well.

You get a bit team as part of your care, in addition to the cancer doctors who would normally be looking after you.  They’re two kinds of things that are important to understand.  I guess the other thing is that there are lots of headlines and news about miracle breakthroughs and cures for cancers and things like that that we see, often, they’re headlines that are based on headlines before we’ve even tried some of these treatments in people.

Actually, the time that it takes for us to do a clinical trial and demonstrate the impact on the cancer developmental growth and then even later on, people’s long-term survival outcomes are things that usually take years for us to be able to do.  Sometimes we may not have the answer to from a clinical trial or three or five or ten or even fifteen years after it starts.  It’s a really long-term investment on the part of the clinicians and the health professionals and the patients, as well, in terms of making sure that we get all of that relevant data.

Joe:                 Haryana, that makes so much sense.  Do you know what?  It also makes me think about making decisions, whether deciding whether the clinical trial is the right way for you, or just deciding that you’re in different types of treatment.  It’s such a critical time for any patient when you have to make choices about things that you don’t necessarily understand.  What advice do you have on that front?

Haryana:         I think the really important thing is to try and think about the questions that you have and what’s important for you.  It’s really valuable when you’re talking to the health professionals that will help you make these decisions and to walk you through that information.  That you understand the things that are important to you.  Is it really important to you that you don’t have to come back to the hospital very often?  Or is it important that you don’t need to disrupt your working environment or that you can continue to drive as you normally would, all of those sorts of things.  The things that are valuable to your lifestyle and your way of living.  Try and be as clear as you can about that.

Also, then to think about the questions that you might have about the treatments and what those options are.  There are some really useful tools that you might like to look up.  There are a series of question prompt lists for cancer patients who are talking to their surgeon or to a medical or radiation oncologist, as well as some form of palliative care.  These little brochures which are available from the Cancer Institute of New South Wales website, are called question prompt lists and you can download those.

They’re just an A4 sheet, so they’re divided across some panels.  They have a whole series of questions which might just prompt you to think about things differently.  You can go along and tick off the questions that you might have that you would like to ask your clinicians.  It just can help you remember that you need to ask when you’re going into those consultations, because once they get started, it can be really challenging to remember the things that you wanted to ask about and say that it’s quite helpful to have those sorts of questions there.

What that can also do is really focus the conversation that you’re having with your doctor on the things that are really important to you.  Sometimes they have a tendency to run off their spiel about different treatments and what the options are.  That can take up a little bit of the conversation time, but if you can use your questions to direct them to the areas that you’re most interested in knowing about, then I think that can actually be really useful for you and for them, as well.

Joe:                 Yes, that’s such a great, point, Haryana.  It also gives you an opportunity to write down answers, because one thing I know from personal experience is that quite often the minute you walk out of a specialist appointment, you have no idea what just happened.

Haryana:         That’s right.

Joe:                 You have nothing to refer back to, right?

Haryana:         Yes.  I think that’s another really interesting point.  Taking notes, having someone else with you who might take notes, as well, is really important and can be quite helpful.  The other thing that you could consider doing is asking if they’re comfortable with you audio recording the consultation.  There was some work that was done in Australia, maybe about 15 years ago now, but it really showed that audio recording those conversations was helpful for patients and it helped them to actually retain information and they could share that with their family and their friends if they wished to, or their general practitioner, to talk through it.  It was a way of providing information directly from the doctor in that way, explaining it in that and allowing them to review it multiple times if they wanted to and have it as a reference.  That was actually really useful for patients.  It meant that they spent less time calling their doctors and the hospital back trying to clarify things, as well.  I would really encourage people to start asking their clinicians to do that and see how that goes with them.

Joe:                 Yes, thanks, Haryana.  That’s such a great point because it’s also so easy to do, right, because we all have, even with our mobile phone with us, you can just turn on the recording and you can just listen back to it later.  Yes, check out any information that you might have missed, or then follow-up with actual specific targeted questions, as well.

Haryana:         Yes, absolutely.  I think it’s really helpful for all of those things.

Joe:                 Cool.  There’s a lot of waiting and uncertainty that comes with cancer because you’re constantly needing tests, results, visits to the hospital or the specialist.  What do you think are some of the ways to deal with waiting, with this constant waiting for things to happen?

Haryana:         I guess this is really getting to the point where you’re feeling sometimes a little bit out of control and that things you don’t have a lot of say in, when some of these things happen and how long you do have to weight.  I think there probably are some strategies that are helpful.  Actually, the first one, I’d say, is when you’re talking decisions about treatment in particular, while you might feel that you want to make a decision and get moving quite quickly, often there is time to really take a little bit of time to think a little and research what it is that you would like and then really consult with your general practitioner and your family and friends about talking about any concerns that you might have.

I think in those initial stages or even when you’re training treatments during the whole journey, then there is time to make some of these decisions.  They don’t have to be made on the spot.  Feeling like you can take that time is important.  The other things, in terms of coping with the waiting time, that’s a really big challenge.  I think there are definitely some ways to do that.  One, I think is, working out what it is that you do to cope normally before your cancer experience.  How do you cope with uncertainty and things because we all have that in our lives and what are the strategies that you do?

Did you really find them helpful?  For some people, it may be that they engage in some either moderate or more vigorous physical activity.  They might run or swim or go for bike rides.  Other people, it might be something that is more like yoga or tai-chi, those kinds of activities that can just really help you to expend some of that energy and take you outside of your own head, if you like, and really focus you on doing something else new completely.  That can be really helpful.  Plus, that feeling that you have after you’ve exercised, so those endorphins can also be really helpful in helping you to manage your mood and things like that.  For some people, meditation is very helpful.

I think that’s potentially a very useful tool for people to be engaging in.  Others, it might be just being able to share that experience with other people and to talk about the fact that you might be feeling anxious and you might be feeling a bit worried and uncertain about things.  I guess trying to plan times around that where you might make sure that in the lead up to another CT scan or in between waiting for the results that you don’t plan to do anything that is going to add to your stress levels at that time, if it possible.  Maybe you don’t plan big meetings or large family events, if you can avoid then when you’re probably not feeling like being around lots of people in an intense situation.

They are some of the practical things that you can do.  Sometimes just having someone else to talk to about these things.  Either a Councillor or a psychologist or pairing up with another person who is having a similar experience or has been through that, so another patient or cancer survivor, who really understands what it’s like to be sitting with that uncertainty and to be quite helpful.  That’s one of the things that people describe a lot, is that people who’ve not had a direct personal experience of cancer find it very challenging to find what it’s like for patients.

Joe:                 That’s great advice.  I really like the point that you made about going back to what worked for you before in a time of stress and uncertainty.  I think most of us just look up and go, this is such a radically new experience that you don’t think of, well, what actually works for me?  What can help me to deal with it that I’ve already done before.  I think that was a great point.

Haryana:         Yes, because we all come to different life experience and including that cancer experience with a whole lot of skills that we already have and that we use.  I think sometimes it’s easy to forget that you’ve got those.

Joe:                 Yes, and with a whole lot of baggage, as well.

Haryana:         That’s true, too, yes.

Joe:                 Haryana, I know you’ve done a lot of work around sleep and how that affects people both during treatment and beyond.  What can someone do to sleep better as they’re going through cancer?

Haryana:         Yes, I guess this is something that’s always useful to reflect if you’re starting to have sleep problems, or you’re feeling that’s an issue for you.  That reflecting on what your sleep was like before the cancer, as well.  There are a lot of people in the general community who have very disturbed sleep.  This may be something that is a much more glaring problem for you and the cancer has just kicked it off again, if you like.  I think understanding that is really helpful.  If it does seem to be something that is related, that has really started to emerge just around the cancer diagnosis or during the treatment, then there are some things that can be quite helpful.

The main approach for managing significant sleep disturbances, that’s known to be effective, is actually cognitive behaviour therapy.  This is really training you to rethink and reframe the way that you manage your sleep patterns and your expectations around that.  It can actually help you to change your sleep quite substantially.  Part of that is actually what we call sleep hygiene.  We talk about this idea of healthy and unhealthy, or unhygienic sleep.  The unhygienic sleep would be sorts of behaviours that people can sometimes get caught up in, using alcohol to moderate their sleep patterns to help them get to sleep.

That probably means that they’re going to be waking up during the night and using tobacco or eating a lot before going to bed, those kinds of things.  The expectation that you actually sleep for eight hours straight is a common perception in the community.  We know that people have quite variable patterns around how long they sleep for at any given time.  The expectations can be quite important.  Once people start to get a little bit disturbed in their sleep, they can’t really describe it, they’re lying in bed for hours on end and watching the clock, sleeping in to make up for not falling asleep on time.  Particularly, if they’re not waking up refreshed, those kinds of things.

What’s really important is that we try and keep a fairly consistent pattern in sleep, so going to bed at a similar time.  If you’re lying in bed and you’re just not going to sleep, then probably laying there and waiting for sleep to come is not the best thing.  Giving yourself a time limit and saying, if I’m not asleep by this time, then I’ll get up and do something else.  Probably make sure that’s not using your computer, television, or using your iPhone or something like that.  The light from all of those things will continue to disturb you.  I think it’s a matter of just planning that and seeing what you can do.  Then if those problem persist, then actually going to see a clinical psychologist who can help you probably within two sessions to actually make some substantial changes in how you’re sleeping is.  I guess the other thing that sometimes happens is, particularly during when you’re in hospital and having treatments, then the sleep does become disturbed because of the environment that you’re in, hospitals are not great places to sleep.

Which is a little bit crazy, given that’s what most people need to do, but you’re often being woken up during the night and not getting it.  Any of these sorts of things can start to put you into a poorer sleep pattern, that can then over time become compounded and you just end up with unhealthy sleep habits.  That’s partly what we’re trying to change in the interventions.  The other thing that we find is that sometimes the kinds of supportive care treatments that you might be taking while you’re going through chemotherapy and other treatments, might actually also impact on your sleep patterns.

Sometimes they might make you feel very stimulated for a few days, so you don’t sleep very well, then those medications taper off after your treatment and you crash.  You’re going through this burn and bust cycle of energy levels that are really associated with the supportive care treatments that you might be taking.  I think there are those aspect of it, as well, and maybe talking to – if you’re finding that’s the case – maybe talking to your treatment team about whether you need to take such high doses of some of these things or for some of the duration, it might actually help to manage some of those symptoms a little bit better, as well.

The other thing I was going to say, is that lots of people think that it’s perfectly normal to have a sleep disturbance around the time of a cancer diagnosis and treatment, so they don’t tell anyone else.  It’s probably important if this is what you’re experiencing, and it is worth talking to someone about it, so that they’re at least aware and can maybe think about some things to change.

Joe:                 Yes, that’s a great point.  I guess, also, we don’t think that maybe it is worse to go and see someone like a clinical psychologist, like you said, who’s a trained professional who can help guide you through some of those psychological and emotionally challenges that go hand-in-hand with cancer.  In terms of this, this plays into this whole emotional and mental support that people have, do you think that people get the support that they need from their family and from their friends?

Haryana:         I think it’s incredibly variable.  Like, in lots of things, people have different connections and different relationships.  Some of those can be more or less supporting.  Particularly when you may have had a specific role in your family, where you might be the person that does the supporting most and your family and friends may not be really sure how to support you because they’re not used to doing that.  That’s not been their role in your relationship, so that can be quite challenging sometimes.

Yes, as I said, I think it’s incredibly variable and there are many people who certainly describe their family and their friends don’t really understand what it’s like for them.  They’re supportive and they’re helpful but actually, really understanding the fear that they’re living with, or the concerns that they have.  It’s not quite the same thing that they find when they talk to other people who have had a cancer diagnosis and can really share that experience in a different way.

Joe:                 That is so true, Haryana.  It also makes me think of the partners and the caregivers who support people through cancer, because they’re quite often also get overlooked because the focus is on the person who’s going through cancer.  It’s also incredibly difficult when you’re trying to maintain some semblance of a normal life, as well.  What do you think?  How can you find that balance between having the normal life you want and also supporting someone you care about through the crazy cancer adventure?

Haryana:         I think it’s a real challenge, particularly in those periods of acute treatment or for people who have advanced cancer.  I think, again, it’s remembering that cancer is just one part of your life, it might be really big and an important part of your life, but it’s not everything.  Trying to remember the relationships that you had and the connections and the things that you liked to do as either an individual or a couple or a family, then they’re the sorts of things that are worth trying to maintain some connection to those activities.

I think for particularly caregivers and partners of patients, there’s a really big change because they do sometimes transition from being equal partners in a relationship, to being a person who’s caring for the other and being much more submissive and feeling responsible for the decision-making and maintaining their life and their lifestyle.  That can be really challenging.  I think recognising sometimes that that creates shifts and conflicts and maybe that there is a need for both the caregiver and the patient to engage in talking with a Councillor or a support person who is outside, who can give them some independent reflection on what’s happening and a space to talk about those things.  Also, for the caregiver sometimes, to feel that it’s okay for them to talk to someone on your own, as well, to get the additional support that they might need, and talk about their own fears and experiences.  They spend a lot of time and so, protecting the person that they’re caring for from their own worries and not wanting to burden them with that.

Finding a way, whether it’s through a support group or a caregiver’s support group, be it Cancer Council’s helpline is a really good useful place to try and seek some of those, or access some of those resources because they’re really often telephone-based supports and that kind of thing.  It can be quite helpful to do them and not contingent on them having to go to appointments, albeit, somewhere it, at particular times.

Joe:                 Yes, that’s such a great point, Haryana.  Yes, you’re so right, the dynamic of the relationship can change, maybe even just for a period of time.  It’s really important to, yes, try to find the balance back again.  Tell me, what happens when you actually call up the Cancer Council support line?  I’ve never done it.  To be honest, I don’t really know anyone who has done it.  I think it’s such a…

Haryana:         It’s such an untapped resource, it’s fantastic.  The helpline… I’m just trying to remember it.  I think it’s: 13-20-11, I think is the number.  That’s Australia-wide.  Basically, you go through to – your calls are answered by people who are trained.  They’re usually counsellors or health people who have a health professional background.  They can actually talk to you about what the needs are that you might be experiencing at the moment.  To provide you some information about what’s possible.  The initial phone call that you make is really about finding out what you need and then working out where to refer you.

They don’t necessarily offer counselling support on the phone immediately, but it’s about planning who’s the best person for you to get access to in order to resolve those problems, or to have someone to talk to.  They do telephone-base support groups and can connect you to face-to-face support groups.  Cancer Council also has fantastic supports like a pro-gynae legal team who provide advice about creating wills and how you manage power of attorney and all of those kinds of things.  As well as a pro-bono financial advisory group, as well.  People who will come in to provide advice about having to renegotiate mortgages, to suspend mortgage payments while you’re going through treatment, also to negotiate access to superannuation or those kinds of things, that can be really helpful in relieving the stressors on both patients and their families during that critical period of time.  Those are some of the things that they do.  They also have a lot of online resources, so they can direct you towards those.  Things like the podcast, that has recently been done, which is talking with a series of experts on different topics.  It’s called: The Thing About Cancer.

They’re really informative, 20 – 40-minute podcasts talking about different topics and issues.  Interesting perspectives and really focused in great detail on a particular aspect of care.  Because Cancer Council is also right across the country and it has offices in regional areas all over they country, they’re also very aware of what the local services are that are available that might support patients and caregivers.  They can be really helpful in that sense.  They do have some telephone-based counselling, as well, if that’s really what you need, then they can direct you toward that service, particularly if there isn’t something available in your cancer treatment centre and locally to you, as well.

Joe:                 Yes, that sounds awesome.  I wish I knew about it when I had to deal with it.  Haryana, let’s just say you go through treatment and everything goes to plan and hopefully cancer is gone and you go through a follow-up regime where you go for check-ups.  I think it’s something that every single cancer survivor has to deal with, is the whole fear of cancer coming back.  What advice do you have on dealing with that?

Haryana:         That is a really big challenge.  It’s a problem for many, many people.   The critical question is, well, I think there are probably several things.  One is, we can’t tell you that your cancer will never come back.  I think that’s probably going to be the hardest thing to deal with.  There are strategies that you can use to try and minimize the impact that that has.  When, as psycho-oncology health professionals, we talk about the fear of cancer recurrence.  We talk about it at different levels.  The question is, is your fear of cancer recurrence becoming intrusive, does it make you worry?  Is it on your mind all the time?  Is it stopping you doing things that you would otherwise do because you’re worrying about your cancer coming back?  Does that make sense?

Joe:                 Yes, absolutely.

Haryana:         Yes, we talk about that as being a higher level of fear of cancer recurrence.  We actually, within our psycho-oncology research group, which is a national clinical trials group, like some of the other groups, that we focus on psycho-social and psychological interventions.  We did do a trial where we developed an intervention.  It was delivered by clinical psychologists who were trained in this particular strategy about dealing with the fear of cancer recurrence.  It did things like looked at what you thought about the cancer and how focused you were on worry, what you understood about your cancer and your prognosis and what the likely trajectory of that was.

As well as mindfulness-based meditation to help you manage the worries that you might have.  There were a whole range of strategies that were thought to people, as part of this intervention.  What we did show was that it was very effective in reducing people’s fear of cancer recurrence and keeping that at a lower level over a six to twelve-month period.  It was a five/six-week intervention that people did.  It actually helped them to reduce their worry long-term in that first year or so after they had done the intervention.  We know that if you have very high levels of fear of recurrence, they are some of the things that can actually really help.

I guess one of the challenges is that we still know that lots of people are really worried about accessing psychological support and care.  That they would say, that when you suggest it, they might want to see a psychologist or a counsellor, that they’re not mad or they’re not crazy, so they don’t need that help.  I guess one of the key messages that is really important for people to understand is that psychology is actually about strategies to help you cope a lot of the times.  It’s to work out what skills you’ve already got in your toolkit and seeing what we can add to that, as well, that might help you cope with that better.

Often, we get people who are experiencing high levels of stress and distress, but they’re certainly not necessarily clinical diagnosed with either a psychiatric illness or something like that.  Just when someone says to you, “Have a chat to the psychologist or the psycho-social team”, it’s really about the extra support and extra tools to help you in your day-to-day life.

Joe:                 Cool.  That makes so much sense, Haryana.  What are some of your personal best tips for just having the life that you want after cancer?

Haryana:         I think it’s thinking about where you are now and where you’d like to go, the kinds of activity and function that you’d like to get back to.  Actually, seeking out the support that you need to do that.  We’ve already talked about the fact that you have your diagnosis and you go through your treatment.  Then, hopefully, everything’s fine and you’re just having your follow-up, to make sure that the cancer hasn’t come back and monitor those sorts of things.  Often, the treatments that you’ve had will have quite substantial impacts on your physical function and certainly your ability to get back to day-to-day life.  People talk about this idea of the new normal as being adjusting to the changes, both physically and emotionally and mentally after a cancer diagnosis and treatment.  I think the critical thing is that the new normal is something that takes a while to work out and it doesn’t mean that things are going to be the same as they are now.  You might come out of your treatment, but you’ll actually change again with what other things are happening.

Finding out, working out what’s the thing that’s most problematic for you at the moment and talking to people about where you can get help for that.  For some people, it might be needing to get back on a better nutritional track.  Some people when they’re going through treatment, will change their diet or they’ll find that they can’t eat properly, or they find that they can’t eat properly, or they’re not interested in food because of the changes or taste and things like that.  Actually, working with the dietitian or a nutritionist might be quite helpful to do some of those things and get a good dietary intake and a healthy diet.  For other people, it might be trying to get back to exercise.

Actually, accessing an exercise physiologist who can work out what your level of physical function is now and gradually work up the program with you, that will help you to increase your physical activity, so you can do all of those sorts of things.  I think that’s my key message, is really just thinking about the challenges for you at this particular time, and what’s actually going to help you to overcome those challenges, so that you can live the life that you want to life and that will bring you a lot of pleasure and quality of life

Joe:                 Yes, thank you, Haryana.  That’s such great advice.  Thanks so much for your time, Haryana.  I really appreciate it.

Haryana:         No problem at all.  Thank you.  It’s been fun talking to you.

Having cancer blow up in your face is never easy, but it’s especially tough when you are only just beginning to make your way through life as a teenager or a young adult. Michael has been through cancer himself and he and went on to become a psychologist helping thousands of young people to deal with cancer.  He’s also built this incredible support system through CanTeen, an organisation that helps so many young people to deal with caner emotionally and socially.  Michael is simply an amazing person and a brilliant mind! Here are some things we cover today:

CanTeen

Dr Michael Carr-Gregg

The Grief Book

Good Thinking: A Teenager’s Guide to Managing Stress and Emotion Using CBT

Change your Thinking by Sarah Edelman

moodgym – Online self-help for depression and anxiety

This Way Up

MindSpot

Episode 026: Stand Up For Your Rights

Episode 033: Your Sexuality and Intimacy Through Cancer

Joe:                 Michael, so how did you first come across cancer?

Michael:          I was diagnosed with a garrotted tumour in my neck when I was 18 years of age.  I was basically told that once the diagnosis had been made that there was very little hope, that I had about three months to live.

Joe:                 Wow.

Michael:          That’s how I came across cancer.

Joe:                 That’s shocking.  What happened next?

Michael:          I was given a choice of having palliative care or I could have lots of head and neck radiotherapy, but it was explained to me because this was the mid-70s, that the amount of radiotherapy that they would have to use to kill the tumour would kill a lot of the tissue around it.  There was no guarantee that I would survive the treatment, but I elected to have the treatment.  It was pretty horrible, I didn’t enjoy it very much, but I’m here, so it was a good decision.

Joe:                 That changed the course of your life?

Michael:          It certainly did, certainly did.  When I was in hospital, I read a book which changed my life.  It was a book called: The Private Worlds of Dying Children.  It was a book by a medical anthropologist called Myra Bluebond-Langer.  Very strange name.  What she’d done is, in the 70s, she’d gone into a children’s leukaemia ward and she just stayed there for a year talking to the children, just playing with them.

She discovered so much interesting stuff.  The thing that really struck me is that even the policy on this children’s leukaemia ward was not to tell them that they were dying, they all knew anyway, but they also knew that they had to keep that knowledge from their mothers and fathers.  Myra called this the mutual pre-tense syndrome.  I just became fascinated by the whole area of psychology, cancer, and what later became as psychosocial oncology.

Joe:                 Yes, that’s really amazing, Michael, and you started CanTeen, which was the first support group for teenagers and children around cancer, which is absolutely amazing.  How did that come about?

Michael:          I wrote my PhD at the University of New South Wales on adolescents with cancer.  I didn’t stay for one year, I stayed for four years on the ward, just talking to the kids as they lived and died.  I discovered that the doctors back then assumed that if they made the young people’s bodies resilient to the disease that their minds would follow.  In fact, it didn’t work that way at all.  Many of the kids had significant psychological problems in addition to battling cancer.

It struck me, and this is what my PhD said, that we need to look after their minds, as well.  This was, I think I finished in 84’, and the beginnings of psychosocial psychology had just started.  I published four or five articles in the medical journal of Australia, highlighting the developmental needs of teenagers with cancer.  The logical thing at the end of the PhD was the start a support group.  I’ve had a lot of help doing that, but it’s still the most important thing I’ve ever done in my life.  It was just a great opportunity and I took it.

Joe:                 Yes, fantastic and good on you.  Thank you so much for doing that.  What are some of the things you’ve discovered that help young adults and kids, help to deal with it mentally and socially and emotionally?

Michael:          What they needed was I think education, information, and support.  What I discovered was that there were four key developmental tasks that these kids had trouble with.  One was emancipation from adults, because they were sick, many of them were immunosuppressed.  They weren’t allowed to be normal teenagers and they’d felt that very keenly, they’d felt like they were put in a cage and someone had thrown away the key.  Instead of being able to spread their wings and fly like most adolescents, because they were sick, their parents were very overprotective and, in many instances, physically, they couldn’t go out because they would just get infections.

The second task that they had difficulty with was identity of formation, just knowing who they were, because what was hanging over their heads the whole time was, well, maybe I won’t be at all.  Maybe I’ll die.  That was pretty hard.  It was like the Sword of Damocles hanging over their head every second of the day.  How can I figure out who I am if I might not be here tomorrow?  The third task was one of making friends, many of them were highly stigmatised by their friends.  They weren’t at school, so they missed out on that socialisation.  Even when they were home, quite often, their friends weren’t allowed to come around because of their immunosuppression.

That’s a key developmental task.  The last task, which I think was one of the most important ones was going to school, and many of them weren’t able to do that either.  Back then, the schools weren’t that great about sending work home.  Four of the most important developmental tasks of these young people were severely compromised by their diagnosis and the treatment.

Joe:                 Wow, that’s so shocking.  Being linked in together in a support group, how did that help?

Michael:          The most important thing you have to understand about adolescents is that no other time in their life is there desire to be with their age mates so strong.  I felt very keenly when I was 18, that I was completely abandoned by my friends, they’d all thought that I was dying.  I had a few exceptions but not many.  I felt very lonely.  Driven by that personal experience, I thought, if we actually created an artificial peer group, where the kids could actually just get together and the one thing they had in common was that they were either brothers or sisters, or people living with cancer.

That this would be a community and they wouldn’t care what other people said of them.  That’s exactly what happened.  We started doing outings.  Then the outings became camps, then the camps became excursions.  It took on a life of its own.  You look at Canteen now, it’s amazing, that same formula still works 33 years later, still working.

Joe:                 It’s unbelievable, isn’t it?  Cancer diagnosis in itself, it’s just such an incredible turning point for someone in their life.  How can someone, especially a young person, deal with it in a better way?

Michael:          I think it boils down to resilience and what I discovered in my PhD is that there are some kids that were naturally resilient and some people who weren’t.  The people who weren’t didn’t do it very well.  Many of them, in fact, I think died, developed really significant psychological morbidity and were really impaired for a long time by their diagnosis.  The resilient kids had a couple of things in common.  One, they all seemed to have a charismatic adult in their life.  One person, one adult person that they’d latched onto that made them feel safe and valued and really listened to their concerns.

The second thing that they had was, they had really good social and emotionally competencies, so before they were sick, they’d developed good problem-solving, decision-making, conflict resolution, anger management.  They were pretty much the psychological package before they became ill.  They drew on those social and emotional competencies to manage the stressors that were thrown at them.  The third thing that they had was really good self-talk.  They would tend to see life as it was, but they’d always try to focus on the good bits.

They would literally be able to, if they couldn’t change something that was happening to them, they’d change the way they thought about it.  Really clever, good resilient self-talk.  They also generally had something to occupy themselves, something that they were really good at.  It might have been art, music, dance, drama, sport.  The last thing they had was spirituality.  They all had a sense of meaning, purpose, and belonging.  Every single one of the kids that did well had not necessarily religion, although some did.

Many of them just had a sense of connectedness or relatedness to some thing or someone that transcended the material world.  This combination of factors seemed to make them really resilient.  If I were to capsulate it, I think that these kids were naturally pretty generous, they had really good empathy for other people, and they were quite mindful.  That was really the key characteristics for those kids who did well.

Joe:                 Is there any way to build on your resilience?

Michael:          All of those skills can be taught.  Obviously, at CanTeen, we try and do that.  As a clinician working with young people who are going through all sorts of difficult situations, that’s your aim, is to build resilience.  It’s much easier to build strong, young people, than repair broken ones.

Joe:                 What do you think are the key characteristics to do that?  What are some of the techniques that someone could apply as a young person to become more resilient and to build a stronger…

Michael:          To practice mindfulness on a regular basis.  There are now apps like Smiling Mind, which can teach you how to do that.  To literally make a determination to be as generous and as kind and as empathic to all the people around you as possible, because we are hard-wired to do nice things for other people.  We benefit from it, not just the people we’re being kind to.  I think CanTeen gives young people the opportunity to reach out, touch, help those other people that are going through what they’re going through.  I think that’s really important.  The other thing is to find meaning and purpose in what’s happening to you.

I guess the greatest thing that ever happened to me was being diagnosed with cancer because it completely and utterly changed my life.  Prior to that, I think I was a spoiled brat.  My parents were diplomats, we travelled around the world, were driven around in limousines, we lived in beautiful mansions, we had servants picking up after us.  It was just an amazing life, but this brought you down to earth because it doesn’t matter who you are, cancer doesn’t discriminate.

Joe:                 Yes, that really makes things real.  Michael, when you’re dealing with treatment and it’s so overwhelming, as you’ve experienced, and you’ve spoken to so many others, is there anything that can help you to get through this whole craziness and uncertainty of dealing with it?  What advice do you have on that front?

Michael:          The same answer as I’ve just given you.  I think treatment is incredibly stressful.  There’s nothing good to be said about it.  I remember as if it was yesterday, lying under a linear accelerator machine, knowing that for the next two days, you’d have terrible pain, nausea, vomiting, and that this was all supposed to be good for you.  I think that having someone that you can talk to about your thoughts and feelings, who’s not going to be judging, very important.  Secondly, having that capacity to one out, to do the mindfulness.

Terribly important.  To find ways of coping with those moments.  That might be through music.  I was very prone of listen to music.  It seemed to soothe me.  It doesn’t work for everybody, but it really changed my moods a lot.  You don’t feel like eating, so you basically can do as much – I actually found communing with nature, being outdoors very important.  My parents actually bought me a house to die in, in the Marlborough Sounds of New Zealand.  A little place called Motabu Bay.

I remember after the really horrible treatment time, I’d go down there, and I’d just wander and look at it.  It has to be one of the most beautiful parts of the world.  I don’t know if you’ve ever seen Marlborough Sounds, Google it, it’s gorgeous.  That’s another thing that really helped me deal particularly well with the horrible treatment.

Joe:                 Wow, that’s incredible.  Michael.  How do you – it might be a weird question – but how do you know that you need help?  How do you know that you’re struggling mentally with cancer?  It is cancer, it’s supposed to be hard.

Michael:          I think that many young people going through treatment, feel miserable most of the day, most of the time.  They can often be bombarded by thoughts of death, dying, loss, grief.  You can basically lose a lot of hope.  You can feel helpless, hopeless, worthless, and you want to withdraw, you don’t want to talk to anyone.  You can get quite irritable and angry.  Probably not that much fun to be around, to be honest with you.

I think those are the big signs that life isn’t going well.  If I had to summarise it, you develop a negative view of yourself, a negative view of your environment, that’s the people, your family, friends, school, work.  Worse, you develop a negative view of the future.  If you have that, I call it the negative triad of cancer.  It’s not good.  That’s when you really need help.  You need to come and speak to someone like me.

Joe:                 Yes, absolutely.  Michael, let me talk about depression and anxiety during cancer.  How does that relate to the pressure and anxiety outside of cancer?

Michael:          Exactly the same.  There’s no difference.  I think that it’s regarded by psychologists by more reactive depression.  It’s in response to an event or we call it an adjustment disorder.  Essentially, it has all the characteristics of depression, it’s just related to the fact that you’re going through a really terrible time.  It’s not sadness, sadness lasts minutes, hours, or days, this is a pervasive and relentless sense of despair that goes for a long time and is much deeper than sadness.

Joe:                 Yes.  Well, absolutely, it’s obviously incredibly tough to deal with in terms of friendships and relationships that are tested, because on one level, you don’t know what to say to people and you don’t want to be a burden and you don’t want to look stupid and weak.  At the same time, I guess other people, they don’t really know what to say either because they don’t want to say the wrong thing or do the wrong thing.  What advice do you have on that front?

Michael:          My experience was that people didn’t know what to say, so they ended up saying really stupid things like, “I know how you feel.” Or avoiding your completely.  I think the best thing you can say is, I’m here for you, I’m interested in helping in any way I can.  I recognise that at times you’re not going to want to talk, but when you do, I’m here.  I think that constantly holding out almost a psychological olive branch to a person, saying, “Look, I know you don’t want to speak at the moment, but when you do, I’m here” over and over again.  Be a broken record because there’ll come a time when they will want to talk.  If you just continue to be there for them, that’ll happen.

Joe:                 Yes, that’s fantastic advice.  One of the other things about cancer is you’re constantly in between things.  You’re in between appointments and treatment and waiting for test results, what do you think someone can do to deal better with this whole uncertainty that comes with cancer?

Michael:          I think that for my money, my philosophy for those young people is, if in life you can’t change something, the thing that separates us from all the other creatures on the planet is that we, and we alone, can change the way you think about it.  If you dwell on the uncertainty, if you ruminate about it.  That’s like a psychological cancer, it will eat you up.  The most important thing is not to do that, to consciously focus on the other parts of your life that are going well.

That takes quite a lot of psychological strength, it takes a lot of help and support, but I’ve found that not only with all the members of CanTeen that I’ve worked with, but all my clients now who are suffering, it works.  You can actually train them to be resilient.  It’s a fundamental tenant of cognitive therapy, that your thoughts influence your feelings, which influence your behaviour.  You’ve got to start with the thoughts.  You’ve got to change your thinking.

Joe:                 Wow.  When you survived cancer, you’ve obviously the shadow still hanging over you because you’re still going for check-ups.  You’re afraid of cancer coming back, how do you deal with it?  How do you cope with the fear of cancer coming back?

Michael:          I stopped going to my check-up appointments because I found them too harrowing.  It was like there’s this syndrome called the Cleopatra Syndrome.  Have you ever heard of that?

Joe:                 No.

Michael:          Queen of denial.  You just deny everything that is happening.  My coping mechanism after a couple of years was just to think, well, if it comes back, it’s come back.  I’m not going to put my life on hold.  I’m not going to spend hours waiting around for results and I had just decided that I was going to get on with my life.  That’s what I did.  CanTeen, of course, provides you with lots of things to do when you’re starting an organisation.  I think that was a good distraction for me.

Joe:                 Is that when you started?

Michael:          No, what you have to understand is that you go through this period of time.  For me, immediately post the radiation therapy, I actually had to do university.  I had to sit exams, so that was a big distraction.  That worked very well for me.  Then I did my master’s thesis on children with cancer in Wellington Hospital in New Zealand.  Then I moved to Australia, did my PhD.  All of it was one long, big working through what had happened to me.  I used my academic studies to process what had happened to me psychologically.  Does that make sense?

Joe:                 Yes, absolutely.

Michael:          Still had anxiety, still had a little bit of depression, maybe even a little bit of PTSD.  I remember feeling that I needed to get back into life.  I never had the same amount of energy, radiotherapy takes that away from you.  I couldn’t keep up, I didn’t have the stamina that my friends had.  You adjust.  That’s what I did.  Then when I finished the PhD, it all came together.  I was sitting in the bath one night and I thought, “CanTeen, that’s what I need to do.” It was overnight the whole concept gelled, and I just made it happen.  I had lots of people to help me but that’s how it worked.

Joe:                 Yes, that’s amazing, Michael, and it’s something obviously finding that new purpose has given you an ability to deal with this whole thing in a completely different way.

Michael:          If you go back to my resilience model, the last part was, finding meaning in what happened to you.  I think that’s what I did.  I didn’t know enough to do it straight away.  That’s why I did the masters thesis and the PhD because I read everything that anybody had ever written on this whole thing to try and understand it, on an intellectual level.  I dealt with a lot of the emotional stuff by intellectualising it.  That was beneficial.  I think it made me a better clinician.

Joe:                 Yes, absolutely.  Is this what you would recommend to other people, as well, going through cancer or after cancer, to find a new purpose, something that really gets your energised, something that gives you direction and new meaning?

Michael:          I think that’s one way of coping.  It’s not for everybody.  Certainly, it worked for me and it works for many of the kids with cancer.  I think about the literally, now, hundreds of kids who have survived and who were within CanTeen.  Obviously, you develop relationship with these people.  Many of them have done amazing things.  Won gold medals at the Paralympics.  Kids who got one leg.  Amazing stuff.  Everybody does it in their own way.  One of my friends wrote a book called: The Grief Book.  She used her experience as a survivor to understand grief and to help other people work through their grief.

She wrote this little book.  It’s available through Black Dog Books, which is a little book company in Australia.  It’s got a hundred different ways for young people to deal with their grief.   Do you see what she did?  She used her own experience and she found something out of that, which was going to leave a remarkable legacy and her name was Elizabeth Vercoe.  She did a great job.  There are a thousand different ways people find meaning and purpose.  That’s two.

Joe:                 Yes, fantastic, Michael.  What are some of the best resources that you would recommend for someone to deal with the mental and the psychological impact of cancer?

Michael:          I believe that if you’re a young person, there’s a book, a really good book called: Good Thinking, by a woman called Sarah Edelman.  I think her co-author is Louise Raymond.  I found that book quite simply brilliant, in terms of helping teenagers learn how to think about things differently.  That’s a fantastic resource.  I can’t really go by that.  If you’re a bit older, a young adult, Sarah Edelman’s written a book for adults called: Change your Thinking.  I think that’s very good too.  Those are the two top-end resources.  If you’re a teenager going through it, and you’re not big on books, there’s a website called: moodgym.  I don’t know if you’ve ever heard of it, that helps you think about things differently, as well.  In terms of self-treatment, I think that’s outstanding, really good.  There are a couple of other online programs, This Way Up is one of them.  There’s another one called MindSpot.  We tend to think things now are online because the whole world is online.  The resources can be found online.  Those are the best I can think of.

Joe:                 Cool.  Fantastic.  Thank you so much, Michael.  It’s incredible.

Michael:          Good.

Joe:                 Thank you for all the stuff you’ve done with CanTeen, it’s mind-blowing.

Michael:          It was the young people who did it.  They were really good.