Simplify Cancer

Hey, my name is Joe Bakhmoutski, I am the creator of Simplify Cancer and it’s weird that with cancer, you end up in this foreign country where you don’t speak the language, you don’t have a map to get around, and it’s scary because you don’t know who you can trust or how things are going to play out, and you have to figure out how everything connects together…

And you can’t stop thinking about it because every twitch, every ache and pain, and you ask yourself: is this cancer? This constant worry, it’s a curse because you can’t think straight.

But it doesn’t have to be that way! You can tackle cancer by learning it’s every move, what you can expect, and what you can do about it. In no time at all, you can become an expert on your own cancer, and that puts you in the driving seat, puts you back in charge, and I’ll give you 2 reasons why:

First reason is external. You go to to another level of confidence when you dealing with cancer, it gives you a huge lift when you are working your specialists and waiting test results and talking to your family about because you’re in charge, you know what’s going on. When you start asking the right questions and all of a sudden, you and your specialist are having a conversation like equals. Oncologists, urologists, surgeons, they know that it’s not like you’re questioning their expertise. Honestly, they love patients who know what’s going on because they can be direct and they don’t have to dumb it down for you.

Second reason is internal and it’s even more powerful, it’s knowing that you are now in control, you know what the next step is and what your options are so you can make informed decisions about treatment and follow up and the life beyond cancer.

So how do you get on top of it and become what I call the next step expert? You don’t need much time, in fact you only need about 5 minutes a day because you are going to leverage the knowledge that others have accumulated, those folks who went down that road before, who had the same cancer, who went through the same treatment.

They have already survived cancer, or maybe they are just 1 step ahead of you, or even at the same place you are right now, they know what you are going through, they know how scary it all is, and they will tell you everything you need to know.

So let’s say you just got diagnosed and now you are about to go and see your oncologist for the very first time. How do you prepare? I suggest you go to a reputable site like Cancer Council here in Australia, or National Cancer Institute in the US or Macmillan Cancer Support in the UK and you read up on your cancer, just enough to have questions, and trust me, you will have questions, we all do, and then take those questions to the online forum for your cancer, and this forum it’s a community, it’s folks like you and me who get together online and they answer questions and share their experience because they’ve been through it, they know exactly what it’s like, and they want to help.

What can you expect from the procedure next week? How long does it take for your hair to grow back after this type of chemo? Will I be able to work during this treatment? Who is the best specialist to work with in your area? These are the things that nobody talks about that you need to know!

I can’t tell you how much it’s helped me and so many others, this is huge! True story from a testicular cancer forum. Plus, it’s completely anonymous so you don’t have to edit anything out, you can tell it like it is, so there is no awkward or uncomfortable questions.

Talking to folks who have been through it gives you confidence over what is happening and what you can expect from treatment, and all you need is 5 minutes a day and you can get all your questions answered by people who really get you and who know exactly where you’re coming from.

To save you time and hassle of searching for it, I will send you a list of the best online communities in a PDF, so put your name and email below and I’ll send it to you right away. I will also send you my best strategies on dealing with the mind games that come with cancer and I will also keep you up to date on the Simplify Cancer podcast,  to make sure you don’t miss out on anything that is relevant to you right now.

You are no longer just waiting for things to happen to you. Now, you’re in charge because you control the flow of information. Now, you have the knowledge and the capability to ask qualified questions and make informed decisions Thanks for watching, put your name and email below, click Submit and I’ll see you soon.

It’s tough to open up and talk about your worries during cancer, even with people you trust the most.  That’s where someone who is outside of your immediate circle can help – they don’t know you and there is no agenda. To shed some light on why a qualified psychologist can become your greatest ally in dealing with  worries and uncertainty that come with cancer, I’m talking to Maria who heads up Clinical Psychology department at the Peter MacCallum Cancer Center in Melbourne. Maria has a really unique way of relating to people and she shares how you can find the right psychologist for you! Here is what we cover in this conversation:

Dr Maria Ftanou at Peter Mac

Can-Sleep: Improving night-time sleep problems

Psychosocial Oncology Program at Peter Mac

Smiling Mind mobile app

Headspace Meditation mobile app

Episode 023: Getting The Support You Need, On Your Terms

Joe:                 Maria, one of the things that really hits someone over the head is a cancer diagnosis, it’s a huge shock when it happens.  How do you make sense of it all, how do you come to grips with it?

Maria:              Yes, I think once someone is diagnosed with cancer, as you said, it is a big shock and people go through a range of emotions.  They feel anxious, they feel worried, they feel overwhelmed about the cancer itself and what lays ahead with treatment.  I don’t think there is one path forward or one simple solution.  People adjust in their own time and pace.  Some things that are usually helpful is talking about how one feels, expressing it with family and friends and other peers.

For some people, getting information and getting the right information from reliable sources is very helpful.  They feel empowered and know what to expect.  For some people, having too much information is very overwhelming as well.  For other people, it’s about finding the right team that they trust and want to work with and they feel can help them with their journey.  Other things that are important is making sure that throughout this experience that you maintain things like looking after yourself, catching up with the people that you love and care about.

Trying to include, as the hospital take over your diary, making sure that you have some things that you really value in it and continue with your leisure.  Exercise, you hear people talking a lot about exercise through all of this, but if you’re able to be fit enough, it’s really encouraged.  It helps people relax, it helps clear the mind, it’s good for the body.  Those are some of the tips that may help.

Joe:                 Yes, absolutely.  In terms of how you end up seeing people, I think one of the challenges that people have, I know that I had, with cancer, you often don’t realise that you need help, psychological help.  You know it’s supposed to be tough, you’re going through a treatment, you’re facing all of these issues, you’re thinking about your own mortality, you’re thinking about what’s going to happen, all this unknown.  I think a lot of folks that I speak to, and myself included, they don’t really realise that they need help.  How would you say that someone should go about this and to say, “Well, I should really talk to someone, to a professional?”

Maria:              I think asking for help is really difficult.  I think that people often see cancer as a physical illness.  Really, it is both, it’s a physical illness and emotional.  It impacts on you emotionally.  Irrespective of prognosis.  It changes people’s lives.  People are often afraid to ask for help for some of the reasons that you said, they’ll be often embarrassed to ask for help because they feel like they should be coping, they feel that they should be resilient, they feel that there’s a stigma attached to speaking to someone.  They feel that they don’t want to burden their healthcare professionals.  They feel that they’ve been given treatments to save their lives, and they feel that this is secondary.

Ideally, what I would like to see, and we’ve come a long way, is that the emotional impacts of cancer are seen as part of routine care, and people are offered supports, and that people can feel that they can ask for help, or that they’re actually offered.  You’re going to go and have surgery now but also, we would like you to speak to the psychologist or the social worker to talk about how this is impacting on you and your family.

I think it’s also really difficult to know when to ask for help.  Yes, she said cancer impacts on your emotionally, but sometimes when you’re not sleeping, when you’re overthinking things, when you often can’t see any hope for the future and stuff like that, that’s probably when it’s really hard and you probably should have sought help earlier.

It’s people, friends and family, will let you know that perhaps you’re not your usual self at the moment.  To check in with friends and family.  They might be the first phone call.  To know that it’s okay to ask for help and that it’s a normal part of care.

Joe:                 Yes, that’s a great point, so that people who love you, they’re the judge to know that you’re not coping as well as you’d like.  Tell me, Maria, how does it look like?  I think if somebody is wondering what does professional help look like?  What would be some of the things that you’d talk about?  How would someone make sure that they don’t feel awkward or overwhelmed when they see someone like yourself?

Maria:              Yes, it’s important to know that seeing a psychologist or a psychiatrist, the first sessions are often very difficult.  Change doesn’t happen also immediately.  It’s very personal because the psychologist will ask you questions about your cancer and how you’re going and its treatment, and they’ll ask you to talk about your fears.  They’ll ask you to talk about the side-effects of the treatment and how they’ve impacted on you and your body.  They’ll ask you to talk about fears of progression or recurrence, or fears of scans.  They’ll also ask you some personal questions about your life, to get to know you and your family and any other traumas that may have happened previously.

They’re really trying to get to know you, and they’ll talk about your own coping styles and your resilience.  One of the main things that’s really important in the therapeutic process is that the person is made to feel comfortable and not judge, that you’ve got a rapport with the psychologist, and the therapist.  I think that’s probably one of the key ingredients.  People feel once they’ve come in that their therapist is genuine, and they’ve got a good rapport and that they can trust them.  They’re probably going to have a more successful relationship and get their needs met.  It might take a couple of goes to find the right therapist, as well.

Joe:                 That’s such a great point, Maria, because I think with a lot of many things, even when you’re seeing a general practitioner, or even a plumber, you need to find the right person for yourself.   I think most of us, I think especially if you’re going through a medical system, you often feel like I can’t ask a second opinion, or I can’t go to see someone else.  Sometimes the person just may not be the right match for you.

Maria:              Yes, exactly.  I think it is important to almost screen your therapist before you go and see them.  You might want to ask them questions like, what is your experience with working with people with cancer?  What kind of therapeutic techniques do you use?  You might want to have these conversations before you’ve gone in and seen them.  Once you’ve given it a go, you might ask yourself, can I trust this person?  Do I feel comfortable in talking about what’s really bothering me?

Do I feel that they’re genuine with me?  Then you can establish whether they’re the right person for you.  Psychology is hard, and therapy is hard.  It’s not an instant result because you’ve got to process things that are really difficult.  It’s important to give it a go, but if you feel that it’s not the right person for you, or you’re feeling you’re being dismissed or not heard, see someone else.

Joe:                 Yes, that’s actually a fantastic point, Maria, because I think a patient or a cancer survivor, giving them the feeling that they’re in control is very important because with cancer, you’re just going to feel so out of control with a lot of stuff.  There’s treatment, there are all these appointments and tests, you don’t really know what’s going on.  The other thing that I think comes up for people is, how do you open up and ask difficult or awkward questions?  There’s a lot of impact on normal life when you go through treatment or after treatment, as well.  These things that affect whether people will be able to go back to work, or whether they’ll be able to have sex, or whether they’ll be able to do all sorts of things.  What is your advice on that front?

Maria:              Like, how to go about asking these questions?

Joe:                 Yes.

Maria:              I think a good therapist will ask those questions.  You don’t have to ask those questions, but a good therapist will give you the opportunity to talk about the impact of cancer on your relationships, the impact on your sex life, the impact and how you feel about your body going from a healthy body to perhaps not being so healthy now, or perhaps not being so independent.  Some of these difficult questions you won’t have to answer them if you don’t want to, but a good therapist will provide you with the opportunity to investigate and explore those issues.

They will provide you with an opportunity to even think about them differently.  I feel sometimes there’s a lot of pressure on people with cancer to feel that they have to know everything and have to ask for everything, as well.  Whereas, I think we can guide that conversation a little better and help people explore it.

Joe:                 Yes, absolutely.  What sort of approach do you use?  I know you must tailor it to people, as well, but what sort of approaches do you typically consider when you’re working with someone with cancer?

Maria:              Yes.  A lot of the work we do, we do a lot of counselling and getting people to tell their narrative and tell their experience.  People are experts of their experience.  Making sure people get a chance to explore it and tell their story.  We use a lot of evidence-based techniques.  We use cognitive behaviour therapy which looks at the way you think and feel and changing behaviours and thoughts that perhaps may or may not be making you feel as good as you’d like to feel.  We use narrative therapy, we use acceptance and commitment therapies, we use a little bit of mindfulness.   Some people with perhaps more advanced disease, we use more existential psychotherapies, as well.

Joe:                 Cool.  You know, Maria, cancer is, I’m sure you come across it a lot, like cancer impacts a lot on relationships, on friendships, that can be tough for people and sometimes people around you don’t really know what to say or do because they don’t want to offend you or say the wrong thing.  What advice do you have for people on that front, on how to talk about cancer with their friends, with their family, with their co-workers?  How to ask for help or get supported in the way that you want to be supported?

Maria:              Yes, cancer impacts on the person and it impacts on their networks of friends and family.  I think a lot of it is because families and friends sometimes don’t know what to say and do and they’re also feeling the emotional impact, the stress, the sadness, the grief of watching a loved one going through cancer.  They perhaps don’t know, as you’ve said, what the right questions are or what the right things to say and do is.  What they tend to do sometimes is to avoid it altogether.

Joe:                 Which is the worst thing you can do.

Maria:              Not talk about what’s going on.  Some relationships grow a lot strong through this, but it’s important to have open communication.  Acknowledge the changes in the relationships, acknowledge the reversals of roles, acknowledge that someone is perhaps unable to do as much as they have been able to do, and the partner is doing a lot more.  Acknowledge the changes in intimacy.  Be able to grieve some of these changes.  It’s important, some friends also want to provide lots of support, but they just don’t know how to.  It’s important to direct people in the kind of support that you want.

For example, many people might bring meals, but what you’d really like is for someone to mow the lawn.  It’s important to perhaps come up with a list of what would be supportive and what isn’t supportive, and delegate tasks to people to help you through.  Some people won’t be able to support you in the way that you want to.  That can often be quite disappointing and sad.  It’s sometimes really important for the person to focus on the support that’s there and work on those relationships that make you feel better.  Some relationships might come to an end as well through this.

Joe:                 Yes, absolutely.  I think that it’s such a great thing to acknowledge, that it’s okay that relationships can change, as well.  Sometimes you feel that it’s a little bit too much and that it’s not happening the way you want it to, that’s just part of life.  Just maybe cancer accelerates certain things, or maybe shows up things that maybe were there before but were beneath the surface, if that makes sense.  Maria, you also touched on the partners of people with cancer and changing roles.

There’s often a lot of pressure on the partner, as well, because not only are they supporting someone through cancer, but they have to go on with their normal life and do the things that they always do.  Do you think that there’s a lot of pressure on the partners, as well?

Maria:              There is a lot of pressure on the partners.  What we have found, and we’re getting to understand more of, the partners, their distress often parallels the patient’s distress to it because they have all of these additional roles.  Sometimes busy hospitals focus on the patient, we don’t focus as much on the partner and offering them support.  Partners do go on and they do maintain households.  They look after the children, they work, and they want to be a loving and caring, supportive partner, as well.

What I do encourage partners to often do is to make sure that through this, that they find time for themselves.  That it’s okay for them to go out with some girlfriends or their male friends and do something with their peers.  It’s okay to take a break from this, as well.  As you know, treatments take a while, as well, it’s important to invest in one’s self to make sure that they don’t burnout and that they’re there.

Joe:                 Yes, that makes so much sense, Maria.  I know you touched on mindfulness before.  What’s your take on mindfulness?

Maria:              Mindfulness we’ve seen a lot, it’s become quite popular a lot in the past two decades in particular.  I think there are mixed results in the answer setting, mindfulness has been very popular in treating depression and anxiety and in clinical populations.  We’ve seen some fantastic work that’s happened with Linda Carson’s group in breast cancer, in, again, helping with anxiety and depression.  There are mixed results, perhaps with people with prostate cancer and the studies there.  My take, for some people it can be really helpful.

For some of my patients, don’t give me all that meditation, all that mindfulness, stay away from it.  You work with the person and what they’re more likely to take up.  There are some really good mindfulness resources, such as if people want to have a try, the headspace app.  Which teaches people do to ten minutes of mindfulness for ten days, they can get a trial of it and see if it works for them.  There’s the smiling mind app, as well, which is an evidence-based app.  I think it’s just be really mindful of who we give mindfulness to.

Joe:                 That’s a great point and these are great resources.  I think that would be really good for folks to investigate because we hear so much about mindfulness, but no one really knows what that is or how it works.

Maria:              Mindfulness was first introduced by Jon Kabat-Zinn, into the health settings.  He developed a mindfulness intervention called: Mindfulness-based stress reduction.  Which teaches you basically to pay attention on purpose to the current moment and being unjudgmental about that moment.  It really teaches you to be focused about what’s going on in your mind right now, and to be aware of that.  They use a range of techniques.

Jon Kabat-Zinn’s work was based in hospitals where people felt that the medical treatments were not improving and then they had to learn to accept some of these illnesses.  Then he developed this technique and it has been effective for things like pain, as well.  The jury is still out about its full effects in cancer.

Joe:                 Yes, Maria, you’re making me think about the challenges associated with creating psychosocial treatments or interventions.  That’s probably what you would call them.  From the perspective of different people’s needs, how people of different age, sex, different preference, some of them might respond to certain things and some of them will respond to completely different things.  I guess that’s an individualised approach, right?  That you would tailor it specific to the person?

Maria:              Yes, absolutely.  You’d tailor things to people’s individual needs and individual personalities.  It’s also, what I find in the work that I do, that people already have a whole bunch of coping strategies that they’ve already used, that have worked in the past.  Cancer has come along, and people feel overwhelmed and sometimes it’s about finding those coping strategies that these people have already used to deal with other things and bringing them back into the now.

Joe:                 That’s fantastic, that’s such a great point.  You’re helping people discover things that they already know that worked for them.

Maria:              Exactly.  When we get really stressed, we give up on things that are usually good for us.  Sometimes when people are really, really stressed, they might give up on exercise, they might give up catching up with their friends and family or doing something really good for themselves or learning something new.  You just help people to get back on track.  When was the last time you caught up with a friend and didn’t talk about cancer?

When was the last time you had some fun during this time?  It’s about reintroducing some of the things that they may have stopped doing.  If they had played an instrument, they may have totally stopped playing it, but the instrument gave them a lot of pleasure.  We’re trying to reintroduce some of those activities that give them value and meaning.

Joe:                 Yes, that’s fantastic, Maria.  Also, I think it’s a very powerful to talk to a psychologist or a counsellor, someone who is actually removed from your life, someone who is not a part of your family or a friend, of whom you have history and you have this certain image.  I think it would be incredibly helpful to talk to someone like yourself, where you don’t have any agenda or something like that, you can just talk to them and find an approach.  It’s almost like a stranger on a train, does that make sense?

Maria:              Yes, it does make sense.  I’ve never been called a stranger on a train as a therapist.

Joe:                 You can say anything, you know?

Maria:              Yes, that’s why I feel people come to us, they feel like they can say things and just say it how it is for them without filtering it out or worrying about the impact that it’s going to have on their families and their friends.  That’s why rapport is so important, that we need to make sure that you’re comfortable with it, because that’s the ultimate aim so that you can say things that are on your mind and not fear that you’re going to be judged or burden the therapist or anything like that.  The therapist has some skills that can help you work through it and guide you along the way to work out and process the issues that are going on for you.

Joe:                 Yes, absolutely.  Maria, many of us have problems with sleep after treatment, what are some of the steps that you can follow to have better sleep?

Maria:              Yes, sleep is a very common problem for people with cancer.  My team, in collaboration with the Royal Melbourne and the Royal Women’s Hospital, we developed a step care program called: Can Sleep for people with cancer.  About 60 percent of people with cancer have sleep difficulties.  That could be during treatment or post treatment.  The first step is to try and work out what’s causing the sleep difficulty.  Is it that you’re worried about your cancer or is it some of the side-effects of cancer, or is there some other medical thing that’s causing the sleep problem?  Such as sleep apnoea.

You do need, initially, before you go into self-management, try to work out what that is.  If it is more of an insomnia, there are lots of things that you can do.  One of them is really trying to get – people have heard about the sleep hygiene technique, so using your bed for sleep alone, not having caffeine too late at night, if you’re in bed for more than 20/30 minutes tossing and turning to get out of bed and go into another room and do a quiet activity.  When you get up in the morning, one of the really important things to do is to go outside and have some natural light.  That kickstarts your body clock again.  Exercising in the morning is also very helpful.

Joe:                 Maria, as something that comes up a lot for anyone who’s been through cancer is the fear of cancer coming back.  What would you recommend in terms of dealing with it?  Trying to keep yourself away from this fear and anxiety about it, and trying to focus on your normal day-to-day life?

Maria:              You’re absolutely right, many of people with cancer fear that, it’s one of the most common concerns, that fear of the cancer will return of progress to another part of the body.  It’s a normal response to having a cancer diagnosis.  For some people, this fear of cancer recurrence can be very debilitating, they’re constantly waiting for the other shoe to drop, they feel like they’ve got a shadow following them.  They’re constantly waiting for something bad to happen.  It can really interfere with their quality of life and their ability to make plans for the future.  It can interfere with their relationships somewhere.

This fear can often be quite debilitating because people may stop coming to appointments because they’re fearful of what the doctors might say, so they might avoid the medical professional, they might seek increased scans, which exacerbates their anxiety as well.  The fear of cancer recurrence has also been strongly associated with depression and anxiety, and a poorer quality of life.  What I recommend is knowing your triggers, knowing that perhaps before a scan, you’re going to feel it more.  Before an anniversary, you’re going to feel it more.  If you notice a different ache and pain in your body, you’re going to feel it more.  Know your triggers.

Then have appropriate medical information.  How often?  What is likely knowing your risks?  What is the likelihood?  When is it appropriate that you seek help?  How often do you need to be checking in getting screenings?  Getting the right information from your medical team.  Having the right supports in place also, talking to your medical team, your friends and your family about these fears, but also talking to your peers.  I think there are some really good peer support groups, that people could share some of these.

Once you’ve spoken and you’ve heard, people can kind of go, okay, it’s okay, it’s just a fear, it’s not actually happening at the moment.  That can be very helpful in making sure that you continue to do your self-care.  Things like we just spoke a bit about earlier, doing things that you enjoy, eating well, exercising, trying to get a good night’s sleep are essential to looking after your body and making your body feel better, and doing things that help manage the worry.  I think we spoke a bit earlier about worry time.  There are things like relaxation that you can also do, progressive muscle relaxation too, to calm the body and the mind.  Those are some of the strategies that could be helpful.

Joe:                 Yes, fantastic.  Thank you so much, Maria, for your time.

Maria:              Thank you.

Today, I’m super excited to be talking to Ben Smith.  Ben is based at the University of New South Wales, in Sydney.  He specialises in developing online tools to deal with the mental side of cancer that give you control over the support that you get. Ben also has some fantastic advice on dealing with the fear of cancer coming back, on where you can turn to for professional help, and where cancer caregivers, what can they do to stay sane during this crazy adventure and much, much more.  There are so many great actionable takeaways from our conversation today that I promise you you’re going to love it. Here is what we cover:

e-TC Express

Ben Smith (Cancer Council)

Australian and New Zealand Urogenital and Prostate Cancer Clinical Trials Group

Conquer fear: protocol of a randomised controlled trial of a psychological intervention to reduce fear of cancer recurrence

Mindful Meditation for people with cancer

Cancer Counselling Professionals » Find a Counsellor

Find a local support group – Cancer Council Victoria

Living Well After Cancer program – Cancer Council NSW

CanDo App

Help For Cancer Caregivers

Emily McDowell empathy cards

Finding My Way

PROMPT-Care

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

Joe:                Ben, when it comes to cancer, like most of us don’t realise that we need help on a psychological level.  I know from personal experience that it just doesn’t occur to you to seek help, because it’s cancer, it’s supposed to be hard, you know?

What’s your take on that?

Ben:                 Well, there’s no doubt that cancer is hard, I can’t take anything away from that.  There are definitely ways that it can be made easier.  I think people really shouldn’t be afraid to ask for help.  As you say, a lot of people don’t necessarily think to do that because they just feel they have to tough out what is an inherently challenging experience.  I think, though, in your case, as is typical of a lot of men, they seem to want to be particularly stoic and particularly reluctant to seek help.  Certainly, something that I saw in my PhD, which was focused on men with testicular cancer.  Although, two thirds of those men reported having unmet needs when it came to support for getting through their cancer experience.

A lot of them were very reluctant to actually go and ask for that help, themselves, or perhaps, yes, it just didn’t occur to them.  I think what that highlights is the importance of something that’s becoming increasingly common in management of people affected by cancer these days, which is something called screening for the stress.  There are a number of projects happening around the world, and one here in Australia called the Adapt project, where they’re trying to implement routine screening for the stress across the cancer trajectory.  They use a very simple tool, a distress thermometer, along with a checklist of items that people may be struggling with.  That’s done at various points throughout their treatment and follow-up.

It helps pick out the people who are struggling a bit and what issues they’re struggling with and it helps, I suppose, the caner care team know what issues they can be helping those patients with.  As you say, sometimes the people, themselves, don’t realise that clinicians aren’t particularly good at recognising when people need help either.  We need ways to routinely being able to identify people who are needing help.

Although, it’s important to acknowledge that not everyone who is distressed as a result of cancer will want help.  Actually, there’s been studies that have found that the majority of patients actually decline help.  We need to give people space to manage their distress how they want and to make them realise that help is available if they need it.

Joe:                 That’s so fascinating that you talk about this tool.  How does it actually work, is it like a questionnaire and it’s like a self-assessed questionnaire that you fill in, say, in front of your specialist?

Ben:                 It can be administered in a number of different ways.  In some cases, or in some centres, it’s just done online or there might be a touch screen, for example, when they turn up to the waiting room where they can complete it.  In some cases, it’s administered by a member of the cancer care team, in other cases, it’s done online, at home.  As it’s done in a project called, Prompt Care, that is running here at my centre.  There are various ways of doing it.  I think my personal opinion is that we need to give patients or people affected by cancer space to honestly report on their levels of distress and the symptoms that their experiencing.

Which is probably best done in the comfort of their own homes.  I think a lot of cancer patients are reluctant to bring up issues with their treating team sometimes, because they don’t want to seem ungrateful for what the doctors have done for them, and like they haven’t done a good enough job kind of thing.  Everyone with cancer is very appreciative of the care that they get, so they don’t want to do anything to make it seem like they’re not.

I think the really important thing is once, however those questions are asked, the follow-up, there needs to be an action based on those questions on behalf of the care team.  Those results need to go to the care team and appropriate actions and referrals need to happen after that.

Joe:                 Yes, Ben, that sounds like a great tool.  Let’s say I’ve used a tool like that to understand that I am struggling with cancer and it’s all a bit too much, so where do I turn?  Do I look for a psychologist, a psychiatrist, a counsellor maybe?  How do I know they’re going to understand where I’m coming from as a cancer patient or a cancer survivor?

Ben:                 I think it all depends on how much you’re struggling and your preferences regarding what type of help you’d like and your access to that help.  There are a lot of different sources of support, that I suppose range in intensity.  A great first-base or first port of call is the cancer information and support line, which is: 13-11-20 helpline, run by a Cancer Council in each state.  Then by calling that line which is accessible to anybody if they’re affected by cancer, whether it be someone who’s a patient or survivor or perhaps even someone who’s caring for one of those people, you can speak to specially trained people who are often registered nurses or counsellors to get some specific advice regarding the issues that you’re facing as someone affected by cancer.

That’s obviously accessible to anybody who has a phone, so that’s great.  I suppose another person who you can turn to is your GP.  I think as a young guy, I didn’t really have a regular GP that I went and saw until a couple of years ago.  I think it’s a really good think to have because a good thing about someone like that is a GP who you see regularly knows you, but they also know the healthcare system, so they can help link you in with any support that you need.

For example, if you go and see a GP now, you can get what’s called a mental health care plan, that basically means that you can have several sessions with a psychologist, subsidized by Medicare, which is great.  I suppose if you’re looking for cancer specific advice, you can go, and you can speak to your treating oncologist, your cancer centre and ask for a referral to a psychologist, or it might be a psychiatrist, or even a social worker or someone like that, if you’re after more practical help at your treating centre.

The downside to that is that a lot of people who have had cancer don’t like to go back to the – if they’re through their treatment and it was really tough, they don’t necessarily want to go back to where that all happened, which brings back a lot of negative memories.  You can look for cancer professionals in the community.  There’s a great organisation called: Cancer Counselling Professionals, which enables you to search for people who have got a specific interest or training in counselling people with cancer.  You can search by postcode and find out who’s around.  You can specify the type of help that you’d like, as well, like, for example, whether you’d like to speak to someone that’s a psychologist or whether you’d prefer to speak to a psychiatrist or you just want a counsellor, you can specify that in your search, as well.

Finally, the last option I suppose is things like online self-management type interventions, where if you don’t feel that you want to speak to a face-to-face professional, and a lot of people do prefer to manage their concerns on their own or just perhaps with the support of their family and friends, then there are a number of websites now, depending on the type of cancer you have or the stage you’re at, where you can seek that kind of help.

Joe:                 Yes, that’s fantastic advice, Ben.  Let’s actually dig into that self-management and self-help part a little bit.  What can you do, yourself, as a cancer patient or a cancer survivor or a carer, if you’re caring for someone who has cancer?  What can you do and what are some of the good resources to check out?

Ben:                 Yes, I suppose as cancer, as we continue to develop better ways of diagnosing and treating cancer, there are an increasing number of people living with and beyond cancer for many years.  There has been an increased focus on self-management, which is a concept that has been applied to many other chronic diseases in the past.  It’s basically about empowering people to manage their own health, who had some kind of illness.  There are, again, numerous ways in which this can be facilitated.

There are programs run through the cancer counsel, for example, there’s one called: Living Well After Cancer, which is all about trying to help people re-establish a healthy lifestyle after having cancer.  I think that’s a big one that a lot of people focus on, is the diet and exercise type things.  It not only is improving your health and doing things like reducing your risk of recurrence, but it’s also a way of getting back some degree of control after an experience where you had very little control.

There’s also just more informational booklets that do include information about self-management strategies, like the Living Well After Cancer booklet also published by Cancer Council.  Then there’s online interventions.  One that’s been developed for anybody affected by cancer by a group led by Dr.  Lisa Beady over at the Flinders Medical Centre, it’s called Finding My Way.  That’s been evaluated and shown to be effective in helping people improve their psychological wellbeing after cancer and is now publicly available.  That’s something that’s accessible to anybody who’s had cancer.  Then there are some more specific websites, a couple that I’ve been involved in developing is one called e-TC for testicular cancer survivors.

Another one I’m currently working on is called: I Conquer Fear, which is specifically focused on helping people manage their concerns about their cancer coming back.  Finally, there’s one way of trying to empower people is to have them talk to other people who have been through the same thing.  Support groups are really important.  Although, not everyone likes that group dynamic, necessarily.  If you prefer one-on-one kind of support, there are programs like Cancer Connect, where you can get specific information and advice from another cancer survivor who’s had a similar experience to you.

Joe:                 Yes, that’s great, Ben.  You mentioned e-TC, I love it, it’s such a great tool.  Could you talk about what it is and how did it come about?

Ben:                 Sure.  ETC came about from my PhD research, which as I mentioned before, was focused on testicular cancer survivors and identifying what issues they faced and trying to find out who the men were that were struggling the most.  What we found in that was that approximately one in five testicular cancer survivors experienced levels of anxiety and depression that were clinically significant.  Having an impact on their everyday lives, making it hard for them to function and do the things they wanted to do.  That compares to about one in eight in the general population, so an increased prevalence in anxiety and depression.  Also, poorer quality of life in several areas.

As I mentioned before, about two thirds of men were reporting unmet supportive care needs but were very reluctant to see a face-to-face and a professional to address those needs.  Since testicular cancer tends to affect young men, who are typically very busy with work and starting a family, or just all the things that happen in your life as a person in their 20s or 30s, we thought that reaching out to these guys online would be – given that they were already fairly highly connected in general, would be a good way of offering support.  e-TC was developed with some funding from the Cancer Council and an organisation called Sydney Catalyst, in the first instance, led by a colleague of mine, Dr.  Louise Henninger.

It’s really targeted at providing men with tools of strategies to help them address some common concerns faced by testicular cancer survivors.  Which are dealing with both the physical and psychological side-effects of their illness, such as worrying about their cancer coming back, but also impact on things like their relationships.  It can have quite a big impact on sexuality and intimacy.  It’s giving them strategies to try and overcome some of those issues, such as learning how to identify and challenge unhelpful thoughts and learning some mindfulness techniques to help them deal with things that they can’t necessarily change, such as the potential risk that their cancer might come back one day.  We’ve done a little bit of evaluation of e-TC to date.

We did a pilot study with 25 men who have had testicular cancer.  What we found from that study was that they thought e-TC was a really great resource, but there was somewhat limited engagement with e-TC, so men seemed to either complete the whole program or not do very much of it at all.  That may have been for practical reasons.  One man talked about losing his password and the procedure he had to go through to get it back was just too onerous, so he just didn’t bother.  Also, as I mentioned before, men are typically reluctant to engage in psychological type research, as well.

There was a clear need for us to try to increase to level of engagement of the intervention by doing things like providing more videos of survivors talking about their experiences.  Also, just making it a bit easier for men to go into the intervention, get the information that they need, and then get out.  Men didn’t want to have to work through pages and pages of information and strategies and exercises that weren’t necessarily directly addressing the specific issues that they were struggling with.

We subsequently refined ETC with the support of ANZUP, which is the Australian and New Zealand Urogenital and Prostate Cancer Trials Group.  We’re now testing that refined intervention in men who had testicular cancer, who were reporting higher levels of distress, so our target population I suppose.  We’re hoping that that evaluation will be completed shortly.

Joe:                 That’s fantastic, Ben, because you saw a need, the need that men want to address some of those underlying psychological issues, they we may not necessarily feel comfortable about going out and seeking a face-to-face professional.  This is really something you can do from the comfort of your own home.  I think that’s fantastic.  Ben, you also touched on the fear of cancer coming back.  You’ve done some work around that.  Could you talk about why it happens, what are some of the strategies to deal with it and what is the tool that you’re working on right now?

Ben:                 Fear of cancer recurrence, or people worrying about their cancer coming back is a really common concern amongst people who have had cancer.  Probably the most pressing issue for many cancer survivors.  That’s the first thing to acknowledge, that it is a completely normal reaction to have when having had cancer.  It’s a rational concern.  The reality is that anyone who has had cancer, there’s a small risk that it could either come back or they could get a new cancer.  That fact that it is a rational concern has informed how we aim to try to address it.  By we, I’ve worked with a team of people, largely from the psycho-oncology cooperative research group, which his based at Sydney Uni to try and address this problem.

The approach that we’ve taken is that it’s not reasonable to expect that you could completely eliminate people’s concerns about their cancer coming back.  That it is something that is likely to happen to everybody.  What we think drives fear of cancer recurrence, which has an impact or a severe impact on people’s lives is actually their beliefs about the value of worry.  Which is called meta cognitions.  For example, if you have either positive beliefs about the value of worry, so you think it’s important that you worry so that it will help you catch any potential recurrence earlier, or if you have negative beliefs about the value of worry.

For example, if you think that worrying itself might actually cause your cancer to come back.  That can create this way of thinking that is very internally focused.  Which is why we think that any aches and pains and things like that can often trigger these thoughts about cancer coming back.  It’s also very focused on threat, as well.  This causes a cycle, whereby, any trigger can set off the cancer recurrence and then people think, the thoughts about the cancer coming back, and then people say, well, it’s important that I worry or that I try to push that worry away.  That actually just increases the worry further.  The way that we’ve tried to address fear of cancer recurrence is by doing things that acknowledge that this is a normal issue, but try to change people, the way they think about worry.  They’re giving these worries less attention.  Not trying to get rid of them, just treat them as noise.

One strategy that we’re using is detached mindfulness, for example.  One of the analogies that is used, for instance, is thinking about your thoughts on cancer, like trains at a busy station.  All these thoughts and concerns, these are trains that are just going past to destinations that you don’t want to go.  Of course, you’re not going to get on, you’re not going to engage with those thoughts, if that train isn’t going to where you want to go.  It’s helping people see them as more internal noise that is going to be there to some degree, but they’re turning down the volume so that they’re giving them less attention.  That’s the kind of approach we’re taking.

That’s part of an intervention called Conquer Fear, which has been shown to have been very effective in reducing the levels of cancer recurrence experienced by people with cancer.  It also includes, I suppose simple strategies from that intervention that people could incorporate into everyday life.  Or also things like worry postponement, which is a strategy, whereby, you set aside a bit of time each day, for example, ideally, not too close before you go to bed, where you’re going to worry about stuff.  Whether it be your cancer coming back or whatever it is.

It just means that by putting aside as specific time to do it each day, you’re less likely for that worry to be happening every hour while you’re trying to get your work done or whatever.  You know that, okay, I’ve got time to think about that late.  A lot of people find that by the time they come to that time, they’re like, actually, I don’t think I need to worry about that anymore, or that moments passed.  That can be quite an effective strategy to help people.  If you are, for anybody who is experiencing worries that are very persistent and not just transitory.

A lot of people talk about their fears about their cancer coming back thing being elevated around the time of follow-up tests or appointments, but if you’re experiencing these fears all the time, and they’re having an impact on your everyday life, then I’d encourage people to go and see a psychologist.

Joe:                 Wow, Ben, those are some great tools.  I love the metaphor about the trains rushing past and how you can just say, well, I don’t want to get on.  That’s great.  I think that’s really powerful.  Is that related to mindfulness?  I guess, Ben, mindfulness is one of those things that everyone talks about, but no one really knows how to do.  What’s your take on mindfulness?  Is there an approach that someone can take to think about it?  Are there any good resource that you could recommend?  What’s your take on that?

Ben:                 I’m not an expert on mindfulness, generally, and the kind of brand of mindfulness that we’ve used in Conquer Fear is a little bit different than your everyday sorts of mindfulness.  The main difference is, detached mindfulness doesn’t aim to create a blank mind, if you like, which is the goal of a lot of forms of mindfulness, it’s to completely still your mind.  Whereas, detached mindfulness is, as I’ve mentioned before, about acknowledging that you might have these unwanted thoughts or feelings.  Being okay about that and just not engaging with them.

Not getting on the train that’s going to the station that you don’t want to go.  As you say, mindfulness has become a bit of a buzz word recently, and I think there’s been a review done of some mindfulness approaches within the cancer context.  I can’t quite remember the results, in fact, but it was done by some colleagues of mine, so I can happily send that through, if you’d like?

Joe:                 That would be great, yes.

Ben:                 You can put it on your website somewhere.

Joe:                 Yes, that would be perfect, Ben.  You know, when it comes to clinical trials, I guess most of us think about drugs.  Of course, online interventions also go through that process.  Can you talk about how that works?

Ben:                 Yes.  The first thing I wanted to say is that it’s true that many online interventions do also go through a rigorous evaluation and testing process.  It’s certainly not true of all the websites and apps that are available out there for people affected by cancer.  There have been several reviews showing that a lot of the websites and apps available through the app store are not based on any evidence or don’t really haven’t gone through any evaluations.  That’s a concern and I think it’s probably caused by the whole regulatory system is still kind of catching up with this whole idea of delivering support online.

I think it’s a really valuable way of helping people, but it’s something that, yes, we do need to be careful about, ensuring that the interventions that we’re developing are actually helping rather than harming people.  The way that we do that, for any research that’s done through universities or hospitals and public health focused institutions, to use e-TC as an example, we first developed the website with input from a variety of experts across several areas, including men who had testicular cancer, they are obviously the experts in that subject matter.

Then once the intervention had been developed, we wanted to test that we had to see the ethics application, which was reviewed to ensure that the way that which we were both delivering and evaluating the intervention was ethically sound and wasn’t likely to cause harm.  Or, the benefits of that outweighed any risks of harm to participants.  What happens first, normally, is that you test the acceptability of the intervention, whether people are likely to or find it useful and it meets their needs or preferences, and it can be feasibly delivered, so people actually engaging with it.

Once you’ve done that, you can then go on, generally, to do a larger study that evaluates whether it actually impacts on the outcomes that you’re hoping to change, such as psychological distress of quality of life.  These are very rigorous processes that you have to go through.  I suppose my advice to anybody who is looking for a good example of one of those tools is just to make sure you have a look at the about section of the website or app, to see who’s developed it and how it’s been done, because if it’s done by a reputable organisation, then it should be fine.

Joe:                 That’s fantastic, Ben.  There’s a lot of work that goes into it.  There are many aspects to building online interventions.  You have to first understand the needs, you have to, as you said, involve the experts, come up with the solution approaches, and find the right language to present it.  I guess design the user experience and build it, as well.  How did you go about managing it all?

Ben:                 I think I touched on probably the two most important things.  Firstly, to involve consumers, it’s not a term I necessarily like, but what I mean by that, the people that you’re developing this intervention for, they should be involved in the process of developing it, because they’re the ones who know what their needs are and how they’re best met.  It’s important to use theory and other research that’s gone before to try and inform that.  Ultimately, it should be driven by the need of the people that you’re aiming to help.

The other thing, apart from involving consumers, I think it’s what I’m really lucky to have worked with great teams, both for e-TC and Conquer Fear, the online intervention we’re developing to help people manage their fear of cancer reoccurrence.  Then have experts that offer multiple different perspectives.  Not only the people who have had cancer, but also the experts in oncology, experts in psychology, experts in E-health or online interventions.  Also, just the experts in general research methodologies.  Yes, I think those are the two most important things involved, the end users in your development.  Try and do it iteratively, so get feedback often and make changes as you go along and work with a team that offers lots of different perspectives.

Joe:                 That’s great.  It’s really reassuring to know that there’s a lot of work and a lot of structure behind it all.  I want to ask you, with cancer, which is obviously tough to deal with, and many relationships and friendships are tested.  Sometimes people don’t want to say the wrong thing or do the wrong thing.  Sometimes you don’t really know what to tell people.  It’s all very confusing, what advice do you have on that front?

Ben:                 Yes, it’s interesting that you ask about this, because I actually came across what I think is a great way to actually help people who have had cancer and their friends and family connect, which you might have heard of it before, but it’s called the Can-Do app.

Joe:                 No, I haven’t heard about it.

Ben:                 Right, yes.  It was developed by a person who has been personally affected by cancer.  Basically, the intention of the app is to help people who have had cancer to get support from their friends and family.  The basic function that it serves is to enable people who have had cancer to develop a list of things that they’d like help or assistance with, and then they can add their friends and family as team members to this app, and those people can then either nominate themselves to help with a particular task that the person affected by cancer needs help with, or the person with cancer can actually allocated tasks to particular people.  I think, as you say, it’s sometimes really hard to know how much or how little you should be doing.  You don’t want to ignore the fact that someone has had cancer, but you don’t want to treat them like an invalid either.

Joe:                 Exactly.

Ben:                 It’s hard to find that balance.  I think things like this app can really help with that.  There are lots of other things, as well, if you now someone who’s had cancer, sometimes it probably depends on the person, you’d probably be the best judge of that, but a little bit of humour can sometimes help.  There are these great Emily McDowell empathy cards.  Look them up if you haven’t seen them, but there are things along the lines of, please let me be the first person to punch the next person who tells you cancer is a journey.

Joe:                 I love that one.

Ben:                 You know, just tackling some of those clichés that get thrown about to describe people who have had cancer.  I think that ultimately, the message is, obviously, it is hard to know what to say or do to or for someone who has had cancer.  The worst thing that you can do is to not get in touch with them at all because you’re worried about saying the wrong thing.  We’re lucky now that we’ve got text and email and messages and stuff like that, so you can really think about what you want to say before you do it, if you’re feeling like a face-to-face conversation might be a little bit awkward.

I suppose if you’ve had cancer, just acknowledging that it can be hard for people to know what to say, it’s important.  Often, people, if they’re not familiar with the whole cancer process, then they might be unsure about where you’re up to and that kind of thing, so this Can-Do app enables people to give brief updates and just send them out to their support team, if you like, just to keep people in the loop.  Just doing things like catching up while doing an activity, I suppose it takes a bit of the pressure off.  If you’ve got a common interest, then doing that.  I suppose the other thing that people with cancer can do is – there’s no doubt that if you haven’t had cancer, it’s probably hard to fully comprehend the magnitude of the experience of someone who has.

People with cancer often say that, so that’s where I think support groups or even online forums and things can be quite useful, because those people get what you’ve been through.  They’ve been there, so they can maybe validate your experience to some degree.

Joe:                 Yes, that’s fantastic, Ben.  I really love the Can-Do app that you’ve described, because I’ve actually been thinking about the same lines, to allow people to volunteer for certain things and put up their hand and say, “Yes, I want to put up for that”, but in a way that is non-threatening on one hand but is also something that happens on your terms.  It’s not something that’s forced on you and someone does something because they think it’s right, but it’s not what you want, you know?

Ben:                 Yes, that’s what great about that.  Most people want to help, but that app helps them know the best way that they can help, from the person with cancer, themselves.

Joe:                 Yes, exactly.  The other thing, Ben, is caregivers, are people, maybe their partners or parents or friends of someone who’s got cancer, so it might be really stressful on them too because all the focus is on the person with cancer, they’re often the people who get left out emotionally and mentally.  What can they do to take care of themselves better, or where can they turn to for help?

Ben:                 Yes, look, there’s no doubt that caregivers do it tough, there’s a lot of evidence that suggests that often they’re actually struggling even more than the people who had cancer, themselves.  Certainly, in the case of fear of cancer recurrence.  It’s often the case that the carers are more worried about the cancer coming back than the person who’s had cancer.  The additional problem for carers is they often feel like they’ve got to be strong for the person they’re caring for, therefore, they don’t express those concerns and they get really bottled up and they’ve got no one to go to and to talk to.

There are support groups for carers, as well.  That’s something I think is really useful, talking to other people who are going through the same challenges and facing the same issues that you are.  I think it’s really important that, as you alluded to, carers need to sometimes take a bit of time to care for themselves.  Ultimately, if they burn out because they’re just so overwhelmed by the task of caring for someone with cancer, then it’s not going to help that person, it’s not going to help them either, if they just work themselves into the ground, basically.  There are a few useful websites I think, or resources.  Again, the Cancer Counsel is that informational support line: 13-11-20.  It’s not just setup for patients or survivors, it’s also accessible to carers.

There are bits of the Cancer Council website, as well, that’s specifically for carers.  They can provide information on things like some stuff, like more practical things, like government support that they might be entitled to, for example, to offset some costs of caring.  It’s not just a time cost for the carers.  Often, caring for someone comes at a great material cost, as well.  I think getting help for that, any help that you can get is useful in that area.  There’s one website that I think there are more and more interventions being developed for carers, thankfully.  Although, I suppose the focus of research has been on the patients up until now and survivors, but helpforcancercaregivers.org is a website established by a hospital and organisation over in the States.  I think it provides some really useful strategies for the carers.

Joe:                 Yes, that’s fantastic, Ben.  Thank you so much for sharing some really fantastic advice.  I’m going to definitely follow-up and put all of the links to the resources that you’ve mentioned just now.  Thanks very much.  It’s been a great help.

Ben:                 Yes, thanks, Joe.  It’s been really great talking to you.

Maybe you’ve just been diagnosed, or maybe you’re going through treatment, or maybe it’s someone you love and you’re trying to get through it together.  Whatever the case may be, you’re on this crazy roller coaster of emotions and feelings that are hard to put into words. That’s what Jill and I are talking about today, practical ways to take charge of your life and your emotions as you tackle cancer on every level. Here is what we cover:

Episode 015: When Your Loved One Has Cancer

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

Episode 018: Finding The Light Amidst The Darkness

Joe:                 Hi Jill, I’m really excited for us to be doing this again.

Jill:                   Thanks, Joe, I’m pleased to be here.

Joe:                 That’s fantastic.  Jill, I thought we could talk about a couple of things today and maybe we can start to talk about some of the phases that you go through emotionally, when you transition across the cancer continuum, when you go from your diagnosis and treatment and survivorship.  How do you go through these emotions, the whole range of it?  How do we deal with them?  Should we start looking at our diagram here?

Jill:                   Yes.  A diagram that I quite often refer to is called the Valley of Despair.  There’s been a lot of research by well-regarded people and it’s the process of transition of your emotions starting off.  It becomes like a rollercoaster ride, anxiety, happiness, fear, threat, guilt, depression, hostility, gradual acceptance, and then moving forward.  More importantly, how does that then relate back your cancer continuum?

When you’re just prior to your first session and your diagnosis, you’ve got anxiety, you know something’s not quite right, you’re worried about the future, so anxiety builds with the fear of the unknown.  It’s like, what’s going to happen to me?  How do I deal with this?  What if?  The way to deal with your anxiety is bring yourself back to the moment, the present time.  Don’t dwell on what’s happened in the past, because that’s what we base our experiences on, what’s happened in the past.

We know what’s happening at the present time and none of us can dictate what’s happening in the future.  That’s where anxiety lives, it’s around that future state.  The anxiety and the worry that you have, oh my goodness, I’m going to my oncologist, what are they going to tell me?  I’ve just had tests, I know something’s wrong, what if?  It’s going through that stressful time before you actually have your initial diagnosis.

Then you get to the point where, okay, I’ve been to the oncologist, I have been diagnosed with cancer, but you know, you’ve got a definite thing that you can associate with.  It’s like, yes, I have cancer.  In a way, you’re sad that you’ve got cancer, but you’re happy that you’ve got a diagnosis.  That fear of the unknown now has a name to it.  That’s coming through your diagnosis, as well.

Joe:                 I’ll just swiftly jump in there, Jill.  I think also the happiness can be associated with maybe an initial treatment, like in my case, I know I had an operation for testicular cancer, to remove a testicle.  I was told the cancer is gone.  I thought, I’m on top of the world, fantastic, I can move on with my life.  Little did I know that three months later, it actually turned out that the cancer had spread and so yes, it was like you said, like a rollercoaster.

Jill:                   Yes.  That’s what the whole process is, it’s never just a straight continuum, like you’re faced with different experiences along the way.  That’s where you need to tune into what’s actually happening, be aware of how you’re feeling.  It’s okay to say, “I feel…” Putting a name to your feelings helps you deal with them.  It’s like, I know when Sam was first diagnosed, we knew that with Sam’s prostate cancer, he was having trouble going to the toilet, going and urinating.  We didn’t know whether it was kidneys, we didn’t know if it was prostate, we didn’t know whether it was obesity.

We didn’t know what it was.  It was like that anxiety, what happens if I can’t wee anymore?  It’s like… When he went off to the oncologist and had all of his tests and it came back that, yes, you’ve got prostate cancer.  Okay, so now we know what’s going on, he went in and had his biopsy, and they identified where it was in the prostate.  Then they put a plan together and it was like, okay, we’re taking control of this again.  That happiness comes in there.  Then you move really quickly back from the happiness to the fear.  Yes, I do have cancer.  I have a plan in place, but what if, what happens when?  Quite often, you spin off into, no, this isn’t happening to me, this is not real, maybe they’ve got it wrong.  Seeking those opinions of others, having trust in your oncologist, having trust in your family.  That’s bringing all of that back in.

Joe:                 Yes, exactly.  As you say, you start questioning yourself, you start saying things like what have I done to deserve this?  Why is it happening to me?  What’s going to happen if I die?  What about my partner?  What about my family?  What am I leaving behind?  What’s my legacy?

Jill:                   Exactly.  What happens to my partner, my child?  What have I done to make a difference in this world?  What am I leaving behind?  What will I be remembered as?  A good, honest person that’s been kind and loving and caring, or a person that’s got cancer, that’s been totally consumed by everything.  The you start to have your choices again.  Then you start to bargain.  It’s like, well, if I do this, maybe it’ll all go away.  I know, and I look back and smile, when same was first diagnosed, it was like, yes, we did seek other tests, other opinions, and then it was like, okay, if Sam drinks pomegranate juice maybe this will go away.

If we eat more meals with cabbage in it, maybe this will go away.  You start to do this whole bargaining thing.  Looking back, we were so caught up in that, that it was consuming, because we thought, if we do this, maybe everything will be okay, rather than just having the trust and the confidence.  Yes, you do have to have your action plan there.

Joe:                 It’s the guilt, isn’t it?

Jill:                   It is, yes.

Joe:                 It’s the guilt that you did something wrong that cancer might be happening for a reason, whereas, the truth is, it’s a lottery, we know, the research tells us that it’s completely random, but we feel guilty about not leading the right lifestyle, not making better decisions along the way, not having done enough in terms of what we talked about, legacy, in terms of being present, in terms of your career and whatever, that all of this guilt just suddenly comes up, doesn’t it?  It just takes over.

Jill:                   It does.  It can be quite consuming.  It can take over your life, that whole guilt feeling, that, was it because I was mean to a kid at school when I was at high school?  Is it because I haven’t spoken and am I now being punished?  Is it because my wife and I argue, and this is a way that the greater being is showing me and bringing me back to be a good person.  It’s going through that whole guilt.  If you allow that to take over, you actually feel defeated.  That’s not good for anybody, mentally or physically.  When a person has cancer, feeling defeated means that you’re giving the control to the cancer.

That will take over your body, that will define who you are: I am the person with cancer.  It’s not hiding from it, but it’s not being defeated by it.  Have that fighting spirit.  It does that you a little while.  It took Sam a while not to feel defeated.  You do become introspective, you do go through depression.  I saw Sam change from a happy go lucky person who always had his own opinions, to being a person that just wanted to sit on the couch and do nothing, he wanted to sleep.  I recognised that that wasn’t normal behaviour for him.  Once again, we went off to the doctor and Sam was diagnosed with depression.  That took a toll.  It was like I’d lost my life partner.

Yes, he now had cancer, but he had disappeared.  It was like, that’s hard to deal with, from a support person, as a lifelong partner.  It was like, I want that person back.  You then, as a support person, put in a lot of extra energy to make sure that the person that’s being diagnosed is getting the best care and the best treatment available.  You’re always on that watch.  I’m forever vigilant, even now, even Sam’s into the survivorship part of the continuum, but I’m forever vigilant, making sure that is he okay?  It’s quite draining from a carer’s point of view, as well.

Joe:                 Yes, then we talked about depression and that was probably the really lowest point of this valley of despair.  Guilt is there, as well, all of these really negative emotions that bring you down.  Jill, one of the things that really helped me, and this probably happened somewhere when I actually started treatment, for example, when I was on my chemotherapy, what really hit home for me was one day, I feel like I accepted cancer, it sounds so ridiculous when I say it.  Obviously, it’s happening.  I think I was in denial.

I think that’s why a lot of these conflicting emotions were coming up for me, things like guilt and being threatened and fear, it’s because I didn’t really acknowledge it, I didn’t really deal with it.  When I finally realised, yes, it’s happening, it’s here, it’s not part of it.  It’s almost like another being, that’s almost next to me.  That’s how it helped me to put it aside and say, “Well, yes, cancer is here but it’s not inside me, it’s here on the side.” That kind of helped me a little bit to come out of this really negative space and to come out of it and try to actually deal with it in a proactive way.

Jill:                   Yes, definitely.  It’s acknowledging, not letting cancer define who you are, but acknowledging, yes, it’s there.  Once you actually give it a name, you can then determine what you’re going to do with it.  By avoiding that whole situation of no, I’m in denial, it’s not really happening to me, you’re avoiding what the issue really is.  Yes, you do have cancer.  Then it’s like, what are we going to do about?  Once you’ve defined it and acknowledged that it exists, don’t let it take over who you are as a person.  Yes, it’ll take over your life for a little while, while you’re going through all of your treatment and stuff like that, but don’t let it define who you are.  You’re still your authentic self.  That’s what you need to stay true to, rather than being something or somebody that you’re not.

Joe:                 Jill, just talking about looking at all of these stages.  We talk about the person that’s going through cancer diagnosis, through treatment, and obviously linked to survivorship.  In terms of your perspective, as the partner, was this a similar journey, or how was it different for you, because you obviously had to support Sam through it?  What was that experience like?

Jill:                   For me, as a carer, I went through all of those range of emotions, as well.  Right from when we knew something was wrong, before the diagnosis, I was worried, what is it.  That anxiety.  We all have, especially if you’ve got a lifelong partner, you’ve got your life plan.  Yes, I’m going to get married, have kids, experience things with my partner and live a long and productive life.  When something happens and goes wrong, I started to think, is my life plan changing?  It’s like, you have to rethink, not just Sam, who he was and what he was dealing with.

What does that mean to me?  Am I going to lose my lifelong partner?  Is my life plan going to change?  The anxiety there, and that still happens, especially when Sam comes up to his regular check-ups, it’s like, is it going to be okay?  That anxiety.  This roller coaster ride just doesn’t go in one direction.  You can go backwards and forwards, depending on what’s happening in your life.  Then once Sam went to the oncologist and was diagnosed, I was happy that he was doing something about it.  Then it comes back it.

Oh my goodness, what are we going to do?  That fear of the unknown again and then feeling a threat.  Yes, my partner might be taken away from me.  I didn’t go into depression.  The way I deal with it is to define it, have an action plan, then I feel like I’m in control.  I had my plan, my plan a was to be with Sam as my lifelong partner.  I had to think about what my plan B might be.  I then had to consider, what if he’s not in my life?  Would I survive?  Thinking about that.  Yes, I did go through denial, no, this is not happening.  If we go on a holiday, maybe we’ll forget about this.  I don’t think I ever got to the point of feeling defeated, because I was determined I was going to do everything possible to, one, help Sam get through it, and two, help me get through it.  If I ended up being defeated, I wouldn’t be able to support Sam.  That’s a fine line on your emotions.  You just have to keep it in check.

You just have to acknowledge that that may occur but keep it in check.  Hostility.  Yes, I was really angry.  I was like, why is this happening to us?  We’re not bad people.  In the world as a whole, there are some bad people out there, why wasn’t it them?  I was really angry.  Why did it happen to us?  We’ve got family, friends, work colleagues, why was this happening to us?  It’s like, jeez, what are we going to do about it?  The way we dealt with that was talking to people, that communication with the people around you, and then we found that they became supporters of both Sam and I.  Our friends and family would do regular checks, how are you going?

Are you okay?  Is there anything that we can do for you?  Having that network helped us along the way, which then took us into gradual acceptance.  Sam was diagnosed with prostate cancer quite a while ago.  He has had treatment.  His last check, which was over a year ago, he was travelling really well.  The cancer had shrunk to a minute section and it hadn’t spread.  It was like, okay, his prognosis was good.  His life expectancy was going back up, which then gave us hope that there may be a future.  Now, Sam’s coming up to his check-up again.  I’ve gone back to feeling anxious about it.  The anxiety.  What happens if something changes.

There’s always that fear of the unknown, but I know once he goes in and he gets the results of his tests, we’ll then be able to put our action plan back in place and keep moving forward.  Always moving forward.  Sometimes you get so overwhelmed by: I have cancer, my partner has cancer, that you feel like you’re marking time, that you feel like the whole world is stopping around you.  By acknowledging that it exists, having plans, having your support network around you, both you and your partner, the carer, you feel like you’ve got way forward.

Joe:                 Also, I want to come back to something we touched on earlier, Jill, about looking at yourself and thinking about your future life and how that looks like, because for me, that’s definitely changed.  I think in a more positive way.  If we talk about the other end of the spectrum, where we talk about moving forward, I think that’s helped me to deal with these check-ups and the unknown that comes with that, was finding new meaning in things, or having different things, for example, working on this podcast.  Writing.  All of those things give me an additional meaning and a new direction that really fuels my perspective with something different.  Did you have a similar experience?

Jill:                   Very.  Exactly.  It’s like looking for the positive in everything that we do.  Yes, there’s a positive and negative.  There’s that balance.  Rather than dwelling on the negative, with everything, enjoy the moment that you’re in, enjoy the experiences that you’re having.  Yes, you’re going to have challenges along the way, but change your perspective, like you mentioned, on how you feel about things, how you view situations.

Think about where you want to put your energy.  Do you want to put your energy into being sad and angry?  Or do you want to put your energy into something that you can actually physically do?  Enjoy the people that you’re with, because we’ve all got a lifelong plan, life’s finite, take the moments that you’re in and make the most of them.  If your child smiles, be happy about that.  If your wife achieves something, be happy for her.  With Sam, I get enjoyment out of little steps forward that I can see him making.

For me, personally, I’ve gone off and I’ve done studying.  I’ve achieved.  Sam supported me in that.  Changing that perspective.  Feeling like you’re back in control of things, rather than saying, “There’s nothing I can do about this.” That whole perspective, be in the moment.  Enjoy what’s going on, change your perception of what’s happening around you.  Have that situational awareness.

Joe:                 That’s fantastic, Jill.  I think this is a perfect lead into talking about addressing those needs that you have across the spectrum of Maslo’s Hierarchy.  Do you want to give us an overview of what that is and then we’ll probably dive into each stage and talk about some specific tactics to deal with it?

Jill:                   Maslo’s Hierarchy of needs, and it’s formed in the base of a pyramid or a triangle.  The base is physiological.  The next step up is safety.  The next step up is love and belonging.  The next step us is esteem.  The top of the pyramid is self-actualisation.  Going right back down to the bottom physiological, that covers off breathing, food, water, sex, sleep, homeostatis, and excretion.  When you’re at pre-diagnosis stage, you need to listen to your body, what is your body telling you?  Something is different in one of these areas.  The hierarchy of needs is starting to be threatened at the foundational level.  As we all know, if a house doesn’t have strong foundations, the house doesn’t stand.  Look at your nutrition, your exercise, follow-up, get those opinions, get your diagnosis happening, look at what your treatment plan is.

Joe:                 Also, into that, that one of the things that really affected me, even after the diagnosis was that all of a sudden, every single thing, every little symptom in your mind is now about cancer.  Headache, is that a tumour in my brain?  All of a sudden, and again, this came back to taking those questions and looking at them objectively.  How I would do it in practical terms is the exercise that I call: The outcome map.  I literally take out a piece of paper and I draw out whatever that symptom is, and I write down that the options are and the likelihood against each.  That makes it real for me.

Okay, now I can look at it objectively because it’s now out on paper and say, yes, you know, I’m probably completely exaggerating this.  If in another case, if I think, well, actually, yes, this could be related to cancer, or it may be something else that needs attention, then I take that, and I make a decision right there.  Then to go and see my GP or writing down a list of questions for my next oncologist appointment or asking an oncology nurse.  All of those things, monitoring yourself and getting in touch with yourself, allow you to go back to a position where you feel threatened on a most basic level, to actually trying to have an action plan.

Jill:                   Exactly.  In project management, there’s a term called: Risk management.  It’s identifying the risks, all the things that could go wrong.  This helps you overcome your anxiety, as well.  If you can list down all of the things that you’re thinking about that might happen in the future, you can then end up with a mitigation.  If this happens, then I can do this.  Once again, it’s taking control, it’s having that plan, having a way forward with all of this.  It comes down to the safety, which is the next rung on Maslo’s Hierarchy of Needs.

It’s around the security of body, of employment, of resources, of morality, of the family, of health and property.  Doing that whole risk management, what happens if this happens to my body, what happens if this happens to my job?  What happens if we don’t have the money to have our house?  What happens if I become mean and angry?  My morality.  What happens to my family?  What happens to my health?  What happens to the property that I have?  It’s all about that action plan, choosing the right specialist, getting a second opinion, if necessary.  Letting your work know.

Supporting your partner.  Letting your friends know that you’re going through this, so that your support network becomes a safety shield around you, that you can actually start to deal with some of this, but also be mindful that your carer is going through this, as well, so supporting your partner both ways.

Joe:                 Yes, absolutely.  I think you mentioned having your circle of people in your life, those people who truly care for you and support you.  That’s definitely one of the things about it, is being transparent about what you’re going through, both as the person if you have cancer, or if you’re the partner of someone with cancer.  It’s really important to open up and say, “Yes, this cancer this is driving me crazy.  Yes, I really have no idea what’s going to happen and I’m afraid.” Saying, “I need help with this.  I need help with getting to the hospital.  I need help with doing the groceries.  I just want to have a conversation about normal stuff.”

Jill:                   Come and have a cup of coffee with me.

Joe:                 Sometimes, we talked about this before, that sometimes people are afraid to say the wrong thing or do the wrong thing.

Jill:                   They don’t know how to talk to people with cancer.

Joe:                 Yes, exactly.

Jill:                   They don’t know what to say, so some people will back away.  You might lose friends that you had for a long time, not because you’ve been a bad person, it’s because they don’t know how to deal with it.  This comes to the next rung on Maslow’s Hierarchy of Needs, love and belonging, which is friendship, family, and sexual intimacy.  Now, when Sam was diagnosed with cancer, we had adult children.  We sat them all down and we discussed all of this.  They have been an amazing support.

Sam didn’t feel alienated from the family, he felt supported.  My kids have helped me come to terms with the roller coaster of the emotions, because it is.  I know that I can speak to them and they’ll say, “What do you need?  Come and have a cup of coffee with me, mum.  Dad, how are you going?” We also spoke to our wider circle of friends.  Making them aware of what was going on, letting people know that, yes, you are afraid but you’re not going to be defined by it.  Sexual intimacy.

A lot of people would sit and say, “I’ve got cancer, I cannot come close to you.” That’s not what it’s all about.  It’s about being in the moment with the person, enjoy that special hug, they’re still who they were before, it’s just that they’ve got a diagnosis of cancer.  Have that gratitude of who that person is.  They haven’t changed, willingly, they’re still your lifelong partner.  Time box what’s going on, is this going to continue forever?  Understanding that then you can deal with it, and provide updates for your family and friends, and help manage expectations, especially from a carer’s point of view, managing expectations of what did Sam think I was going to do to support him?

It’s like, well, I can do this, this, and this, but I need help in these aspects of our life.  It’s calling out for that, and it’s having that gratitude of that support network that’s around you.  You’re not in this on your own.

Joe:                 Exactly.  Being in the moment I think is a phrase that gets thrown around a lot these days.  I think it’s a really tangible and practical thing, it’s not thinking about something else when you’re talking to your partner, you’re actually listening then, you’re having a conversation and not thinking, what are we going to have for dinner?  If you’re with a friend, he’s talking to them about what’s going on in their life and not thinking about whatever it is that you have going on about the game you’re going to watch or something.

Being in the moment really is about, I’m with this person right now, I’m not thinking about doing the groceries later, or watching a movie or what am I going to do tomorrow?  It’s really being in that moment right now, listening to where they are, saying where you’re at.  Really, that’s what being in the moment is for me.  Also, I know there is all this stuff about mindfulness, all this stuff about being mindful of where you are in the moment, one of the things that I’ve really discovered that was a surprise for me, really, mindfulness is about observing your own internal state.

If, for example, you go through this roller coaster of emotions that we talked about, going through being anxious or feeling guilty or threatened.  What’s really helped me is to go, not to push it away and not to say, no, it’s not happening, but to say, do you know what?  I am scared.  Let me just feel how does it feel in my body.  I can feel that I’m figity, I’m not myself.  Letting that sink in, letting that feeling go through has really helped me settle it down, almost on a physiological level, you know?

Jill:                   That’s exactly right.  A lot of people aren’t in tune with their emotions.  A lot of people try to supress their emotions, acknowledging that it is okay to say, “I’m scared.  I’m afraid.” Being in the moment with that person, doing that whole mindfulness aspect helps combat anxiety, because that mindfulness and being in the moment, it brings you back to the present, not what will happen in the future.  The future we’ve got no control over yet.  The present we have control over.  Being in the moment, mindfulness combats anxiety and it also helps you to pick up on things that you may have missed, if you’re worrying about doing the groceries later, it helps you look at the person that you’re with, to see how they’re going?  You share extra special moments by doing this, that you might have just skipped over.  It’s like, that’s what creates that strong bond.

It doesn’t have to be with your partner or your loved one, it can be with your kids, it could be with your friends, it could be with your work colleagues.  Being in the moment, enjoy what they’re doing, participate.  Working through it together, which takes you up to the next level in Maslow’s Hierarchy of Needs, esteem.  This is around self-esteem, confidence, achievement, respect of others, and respect by others.  Mindfulness and being in the moment helps you with the confidence to know what you’re doing at that particular point in time.

You might not know tomorrow, but you know what you’re doing right then, you’re getting that sense of achievement that you can do something right now.  Your partner or your carer is going to help you do that.  They’re validating that you’re a worthy person, so that your self-esteem will start to improve.

Joe:                 One of the ways to do that, I’ve spent a bit of time looking at the work of Nathanial Branden, the world’s expert on self-esteem, one of his things is about doing sentence completion exercise.  Having what he calls a sentence stem, so something like if I get five percent better at being more present in the moment, then you finish up with whatever comes up next for your, you end up with some really surprising results.  If I spend five percent more time on doing the things I really care about, then… and you come up with all the answers you need to really feel like you’re more in control, that you deserve happiness, that you deserve the life you want to have.

Jill:                   Exactly.  It’s empowering, isn’t it?

Joe:                 Yes, absolutely.

Jill:                   Having that sense of achievement that I deserve this, I can do this, it’s like you then show other people that you’re not going to be dictated to by the cancer.  They give you respect.  You’re taking control of your own life and your destiny.  Once they show you the respect, you’ve got immense respect for them as individuals.  It’s that mutual collaboration.  Definitely identify that if I do this, that this can happen.  Sam and I had to sit and go: If this happens, then we can do that.  It comes back to that risk management again and that mitigation, if this happens, then we can do this.  It’s having that control, the confidence that you will know that in the future, if something crazy does happen, you’ve got the plan there to deal with it.

Joe:                 Exactly.  That, to me, Jill, is also about becoming an expert on your own illness.  If you understand exactly what’s going on, every step of the way, what are the possible options?  What would happen if this test comes back positive or negative?  What would happen then?  It gives you confidence in that you know what the next steps are, it gives you the capability to ask the right questions of your specialist.  It gives you a sense of being in control.

Jill:                   That’s correct.  It’s like leverage the experience of others.  It’s very important to understand what cancer is, what cancer can do to you, physically and emotionally, what cancer can do to your support network.  Find out as much information as possible, because then that means you’re in control of it.  Leverage the information that you get from your specialist, your oncologist.  They’re the one to deal with this day in, day out.  This is the first time that you’re dealing with it.  Leverage their experience.

It’s being prepared for the positive and the negative and then that helps you move forward.  It’s taking you to the top of Maslow’s Hierarchy of Needs, the top of the pyramid, your morality, your creativity, problem-solving, your lack of prejudice, acceptance of the facts.  If you can do those, you’ve achieve self-actualisation.  You know who you are, where you are, and what you can do about things.  Choosing your bigger purpose, don’t let cancer define who you are, you’re still an individual.  You’re still your authentic self.  You’ve got to make cancer a part of your life, but not be consumed by it.  It’s building your army of supporters around you and then you’ll have a renewed perspective of life.  Look at the little things.

They are the things that make the difference, be in the moment.  Look for those positive experiences.  Learn and grow from the negative experiences but accept that they’re all part of this.  Know who you are and how you’re going to deal with things.  It’s very scary.  It really is, but once you come to terms with all of that, going through your diagnosis, your treatment, and your survivorship, you’re armed with what you’ll need as you go through that rollercoaster of emotions.  I’m not saying that it’s all going to be smooth sailing and it’s all going to be in the same positive direction.  Sometimes you’ll have setbacks, but knowing who you can call on, going through all those hierarchy of needs.  Where have you been taken to at that particular point in time?  What do you need to do to mitigate that risk?

Joe:                 That’s fantastic, Jill.  Thank you so much.

Jill:                   That’s okay, it’s been a pleasure, Joe.

Cancer is crazy – every single day, you’re dealing with physical symptoms and side effects of treatment and your own emotional state while still trying maintain a sense of normality in your everyday life.  It’s so easy to overthink it and get swept up in the craziness of it all… That’s why I love talking to Khevin – he is a male breast cancer survivor who has a way of cutting through the noise of worries and stress and deal with cancer in a profound and honest way through humor and ingenuity, how to laugh despite cancer, at the world and at yourself. Here is what we cover:

Khevin Barnes | Cure Today

MALE BREAST CANCER SURVIVOR

Khevin Barnes; Male Breast Cancer Survivor, Cancer Writer, Inspirational Keynote Speaker

Episode 018: Finding The Light Amidst The Darkness

Joe:                 Khevin, the first thing I want to ask you is, how did you react when you first found out that you had cancer?

Khevin:            Well, I was numb.  The reason for that is, the way I found out was a little different.  I was living in Hawaii at the time, with my wife.  I had retired from being a magician for many years.  We wanted to do something, something that was really different and something that we really wanted to do, which was to live in a zen centre and to study zen meditation.  We actually lived in Hawaii as residents in zen centre for a year, and my diagnosis happened there in Hawaii.  We went to see my primary care physician and I had a little bump on my breast and went to see a surgeon, who did a needle biopsy.  She was going to get the results to me in a few days.

At that very same time, my mother who lived in the States, had fallen and broken her hip, he was 93 years old.  I jumped on a plane, they said she wasn’t going to live very much longer.  I flew to California to see mom, say goodbye to mom.  On Mother’s Day, which was on May 11th of 2014, I got a phone call from this physician, she left a message.  I’ll never forget the words.  She said, “Khevin, I have a little bit of bad news.” That’s how I got my diagnosis, over the phone, on Mother’s Day, when I had gone to literally say goodbye to my mom.

She lived another couple of days, I flew back to Hawaii, but the thing that’s so unusual about this is that I was there for her, so my brothers and sisters were there, we were all saying goodbye.  When this happened, and I found out I had cancer, I didn’t even have time to even process it.  I just put it away.  On the plane ride back to Hawaii, it’s when it first hit.  That numbness that I had remained that way for a couple of days, until I was heading home, and then I started thinking about it.  That’s when all the typical fears and thoughts of the future, worries about the heck this cancer even is, that’s when it all set it.

Joe:                 Yes, well, I guess it’s a real struggle to talk about cancer, as well, because when you’re going through it and asking for help and talking to your family, talking to your friends.  How did you go about that?

Khevin:            Well, my family was very supportive, but remember, they were 2,500 miles away.  They were all back in the mainland.  Fortunately, I was living in about the best place you can be to have a cancer diagnosis, which was a zen community, and a zen Buddhist temple.  People there, of course, were totally supportive.  I guess that proves that no matter what kind of lifestyle you live, you can be vegetarian and sit in meditation all day long, walk on the beach, and still get cancer.  There’s no guarantees that where you are or what you do is going to keep that out of your life.  They were totally supportive.  I stayed there another four months before I came back to the mainland, then I had my surgery, my mastectomy there.  I couldn’t have asked for anything more.

Joe:                 Yes, that’s fantastic, Khevin.  Tell me, how did the meditation help you to deal with the whole madness of cancer?

Khevin:            It helped me a lot and it still helps me today.  It’s one of the best tools that I have.  Meditation is really just the simple practice of living in this moment right now.  It sounds tripe, it sounds over simplified.  It really is not a complicated thing.  It takes a lot of practice because our minds are in and out of the fear of cancer, the fear of recurrence, the issues we’ve had in the past with the pain of living with a life-threatening disease.  Meditation, I think is probably the single most beneficial thing that I have.  I try to do meditation every day and it’s been a wonderful help.

Joe:                 You know, Khevin, for me, meditation has been always something that I’ve heard about and wanted to try, I guess if someone wanted to get into it, what would you recommend as a way to get in?  We hear a lot about meditation, but no one really knows how to do it?

Khevin:            Well, the professionals, the guys who go back a thousand years will tell you they don’t know how to do it.  You’re not doing it.  That’s true.  I’ll play the Hollywood version.  Nobody becomes enlightened, we’re not heading somewhere that’s going to give us peace in our lives, or change our lives in some significant way, we’re not trying to get that.  Meditation is a lot easier than that.  Zen mediation should be effortless and eventually, it is.  It’s sitting quietly, watching your busy thoughts, we all have them, all day long.

I have them right now as I’m speaking to you, wondering what your next question will be.  Understanding that, that’s how the brain works, that’s part of it.  When we can focus on this moment right now, which is you and me talking, and forget everything else, we are in perfect Zen meditation.  That’s really all there is to it.  The Hollywood version makes it much more complicated.  We are all enlightened beings, it’s a matter of sitting with that and allowing that to take place inside of us.

Joe:                 That’s a pretty cool rundown, Khevin.  Another form of dealing with stress and with cancer, I guess is music.  I know that for me, Khevin, music has always been so much more than self-expression.  I know it might sound weird, but for me, music has always been a form of self-therapy.  I know that you’re into music, as well, so has your song-writing, has it helped you to deal with cancer and the madness of it all?

Khevin:            Absolutely.  Next to meditation, music is the number one thing in my life, but it always has been.  Meditation is something I got into, probably 15 years ago when I got married to my wife, who had been meditating for 4 years.  Music heals.  That’s all I can say about it.  Music heals.  I’ve been writing music for many years.  As I was sitting recuperating in that Zen centre with all of the tubes coming out of my left breast, I wrote a song called: What good is a breast?  It made me laugh, it was a funny, silly tune.  Really, asking the question: What good is a breast?

That’s what got me through those first couple of weeks.  Long before I started to write a musical about it, which I’ll tell you a bit about later.  It was that song, what good is a breast.  I had that going on in my head the whole time.  I’ve written probably 150 tunes and I look back at my whole life and I have these songs, and they tell me everything that I had gone through.  I think the music is key.  You don’t have to be a writer but listening to it and using it is a wonderful healing tool.  It’s so important.

Joe:                 Do you think that music is something that anyone can get into?  Anyone who wants to express themselves, but maybe they’ve always been afraid to try?  Maybe they’re worried about not really having the musical talent or not having a great voice, is that something that anyone can do, do you think?

Khevin:            Sure.  I’ve been doing it for over 50 years.  I still worry about whether or not I have a good enough voice to do it.  That’s typical for us, I can’t speak for all of us, but I never feel totally like I’m professional at anything.  There’s always some learning I can do and improvement.  Yes, anybody can do it, whether you’re writing it, playing an instrument, listening to it.  I don’t know anybody who doesn’t enjoy hearing music.  I’m sure there are some folks out there, but it’s so key.  It’s such a fantastic element that we can add to our lives.  I can’t imagine living without music.

Joe:                 I completely agree with you, Khevin.  I think I also think that continuous improvement is a path to mastery.  You can never be settled and just being in one place.

Khevin:            Well said, yes, absolutely.  Yes, I love writing lyrics and tunes and I was writing a musical, but I’ll tell you about that.

Joe:                 Yes, let’s talk about that.  You have an entire musical about male breast cancer.  How did that come about?

Khevin:            Well, it started with that song: What good is a breast.  I had written another musical prior to this, about maybe eight years ago when we were still living in California.  I wrote a musical that I wanted seniors to do with it.  We were very involved with teaching senior’s laughter yoga.  Going into senior centres and laughing with people, basically.  Laughter is another tool for helping people.  I wanted to write a play that they could relate to, to actually get up and actually do.  It took a year to write it, had twelve songs in it, and so I had one under my belt that I had done.

The idea of writing another one was a little bit daunting because it takes a lot of time.  I’ve been working on this one for 15 months now.  My deadline for finishing is the end of this month, June.  I’m almost there.  It’s a lot.  It really gets your focused on the issue that you’re working with.  In my case, male breast cancer.  There are so many elements.  It’s a comedy, believe it or not, and people say to me, how can you laugh at cancer?  I told them, I’m not laughing at cancer, I’m laughing in spite of it.  That’s the whole point.

Male breast cancer, anyway you look at it is a laughy thing.  It doesn’t make any sense, because most people don’t know they even have it.  It’s the silliest thing I’ve ever heard of, because of that, I’m able to laugh along those lines and write a show that I hope will engage people and let them know that male breast cancer actually hits.  A lot of folks still don’t realize that.

Joe:                 Yes, that’s fantastic, Khevin.  We all know that laughter is the best medicine.  Like we said, it can be really a great tool for dealing with cancer and all the stress.  I know how you have some unique strategies on when it comes to putting laughter into practice, can you talk about that?

Khevin:            Sure.  My wife got me into laughter yoga about 12 years ago.  Laughter yoga was invented, if that’s the correct word, it was conceived of by a gentleman who lives in India.  His name is Dr.  Kataria, he was a medical doctor.  He got the idea about 20 years ago, to use laughter for healing people.  He gathered people and in park in Mumbai, India, and they told jokes.  After three of four days, they realised they ran out of jokes, and they came up with this concept of laughing for no reason.

That’s what laughing is about, laughing yoga.  We get on the phone, we do workshops, we laugh with people, but for no reason, because laughter in a group situation always brings more laughter.  You start laughing because you’re laughing.  It’s a very simple thing, it’s like meditation in that sense, you can’t overthink it.  Again, it’s a wonderful tool.  You’re breathing properly, if you’re laughing, you’re breathing down deep where you need that oxygen.  You’re lowering cortisol, which is the stress hormone.  You’re increasing endorphins.  This is all supported by scientific evidence in the last ten years.  Anyway you look at it, laughing is a good thing, if you can do it with a group, right on, you’ve got it made.

Joe:                 That’s great, so teach me.  I think it sounds so great, like laughing for no reason at all, but someone has to start, right?  Someone has to get it going.

Khevin:            Just talking to you, I’m laughing.  Okay, I’ll teach you a little laughter exercise.  Can you see me?

Joe:                 Yes.

Khevin:            For those of us who are listening to the audio right now, I’m holding two pretend glasses in my hand.  Can you do this with me?  Joe, you’ve got to hold up your glasses.  You’re pouring laughter from one glass to the other saying, ha, ha, ha, ha, ha.

Joe:                 Ha, ha, ha, ha, ha.

Khevin:            Okay, the other glass, ha, ha, ha, ha, ha.  We’re shaking them up like a cocktail and now we’re drinking it.  Ha, ha, ha, ha, ha.

Joe:                 Wow, that is a great tool, yes.  Wow, yes.

Khevin:            When we combine simple exercises, like the one we just did, and there are hundreds of them that we can do, it helps a lot.  It helps to stimulate that laughter.  Mostly because it’s silly, pouring an imaginary glass of laughter.

Joe:                 Yes, Khevin, also I think it’s very symbolic, right?  Like you’ve got a glass half full, half empty.

Khevin:            There we are, I’ve never thought about that.  Way to go.  There are hundreds of exercises that people have come up with, we use a lot of them, through all of these simple things.

Joe:                 That’s fantastic.  I know that you’re a big believer in mindfulness, as well.  What does it mean for you and how can someone apply it in their daily life?

Khevin:            Well, mindfulness, of course, is related to meditation.  In my case, Zen meditation.  It really is a very simple thing.  Mindfulness is a psychological process, really, of bringing a person’s attention back to what’s happening right now.  Mindfulness and meditation is a tool for achieving mindfulness or at least experiencing it.  Basically, if you are able to forget about that MRI you have tomorrow, or at least set it aside, because the fear that goes with it can be terrifying, at least in my case.  I don’t like them.

To get back to the moment at hand, the moment at hand right now is talking to Joe, or the moment at hand is petting my cat who is sitting right over here in the corner.  Really, it’s as simple as that.  Mindfulness is simply being mindful for where you are in the moment.  It takes practice.  People who have worked at this for years will tell you, it’s still working.  It’s a daily practice you.  You need to do it more to be able to do it.

Joe:                 Cool.  Look, Khevin, I know that you speak to many folks about how they deal with cancer, you obviously think about it a lot.  You write a lot about your cancer experience.  You express it in so many different ways, so what are the top, let’s say, three things that you learned about dealing with cancer, dealing with the fear, dealing with the stress, what are the top three things that you have learned that everyone should know about?

Khevin:            Well, how about I give you the five things real fast?

Joe:                 Perfect, even better.

Khevin:            The first one is laugh often, laugh deeply, laugh with friends, laugh at yourself, and by all means, laugh at your cancer.  This may seem foreign to you for a moment, but let that sink in.  Again, you’re not laughing at your disease, you’re laughing when you realise how crazy it is that it even exists.  There are 14 million people a year diagnosed with cancer around the world.  Here in the United States, we’re expecting about 1.7 million new cancer people to be present in this coming year, 2018.  It’s huge, it’s around the world.  It’s difficult to assimilate.  It’s difficult to understand.  Number two, I would say get involved.

As a cancer survivor, the best thing I’ve ever done is like writing music, it’s writing for cure magazine and some other ones.  I write whatever I feel.  I love to be able to do that.  It’s nice to be able to express.  Write in a journal.  Write a letter to another cancer survivor.  Get involved in some way and you’ll find that it takes your stress away from your own situation.  Number three, I’d say believe in being well.  Our bodies respond to how we believe, what our beliefs are, what we’re thinking, how we’re feeling.  I believe that I’m a well person right now.  I may have cancer in my body, but I’m symptom free.  At the moment, symptom free is all I need.  Believe in being well.

Number four would be exercise.  I’ve been a runner my whole life, I can’t run now but I just had two new knees put in, so I’m walking pretty well.  Whether it’s walk, and if you can’t do that, sit in a chair and move your arms, get some movement in your body and in your life.  I would say number five, add some music.  Again, I can’t overstress how incredible music is, music feels.  Do it any way you can.  Listen to it, sing it, jot it, add music into your world.

Joe:                 Love it.  Khevin, that is fantastic.  You mentioned get involved, I think that’s such fantastic advice.  What are some of the great ways to get involved in something that’s bigger than yourself?

Khevin:            That’s a good question.  It is bigger than yourself and the very fact that it is, is what makes it work so well, I think.  All of the cancer periodicals, magazines, blogs, they want to hear your story.  Don’t even try to be a writer, just try to tell your story.  That’s what people like to read.  That’s one way to do it.  Again, help somebody down the street that you know has cancer.  I love meeting new folks because I remember how terrifying it is, really, for the first weeks and months.  Some people don’t have the wonderful support that I had.  You can reach out and help folks.  Go to a support group.  Again, if you know somebody, ask them, what do you need?  What can I do for you?  What can I tell you from my experience?  There are many ways to get involved and those are a couple of them, that I think will help.  You’ve got to be aware that there are folks around you that are experiencing the same thing you are, 14 million a year.  It’s an amazing number, it’s overwhelming.  They are looking for help.  Give a hand out.

Joe:                 So true, Khevin.  I was reading about how cancer stole your life, but it also gave you a new one, could you talk about that?

Khevin:            Yes, that was a piece I wrote for Cure a while back.  When I wrote it, I was talking about, I’ve had the good fortune is the right word, to experience cancer from both sides.  What I mean by that is, I was a caregiver.  My first wife died at the age of 47 from ovarian cancer.  She died much too young.  The last three of four years were very difficult.  I was her caregiver, she was on a food tube for six months.  I had to feed her that way.  She had all kinds of procedures, experimental therapies, flew around the United States to get help from different agencies that wanted to give her a hand.  Ultimately, it killed her, but she never lost her spirit or her fight.

In fact, being my magical assistant, we still had a couple of tours that we did.  We went to Japan and did a tour when she lost her hair three times.  The only way that she could go was her oncologist allowed us to take her chemotherapy with us to use it halfway through the tour, so we found a doctor along the way to give it to her.  Her drive to keep living was incredible.  That was the life I had to leave behind.  For a long time, a couple of years, really, I wasn’t quite sure how life would ever come back.  You’ll hear this from a lot of survivors who have lost a spouse and a friend or a brother or sister, it’s very difficult to imagine living without that person.  What I had to do was, I had to realise that was a life here and I had a chance for a totally different second life.

In a way, cancer left that life behind but allowed me to live this brand-new life.  As I see it that way, it’s not that I’m forgetting any of the past or pretending it didn’t happen, but this new life is exciting, it’s another chance to live, and I’m very grateful for that.  That’s really what I was talking about when I said that cancer stole my life and gave me a new one.

Joe:                 Yes, that you for sharing that story, because it’s really moving.  Khevin, if you had a minute with someone who just got diagnosed with cancer, what would you tell them?

Khevin:            I had advice from a fellow who was a paraplegic.  I was feeling very distressed, a lot of pain, I was living in a small place in Oregon after my wife died.  I said to him, how do you deal with this pain?  He couldn’t move his arm to his leg, and he’d lived like this for a number of years.  He said to me, and I’ll never forget his words, “Khevin, immerse yourself in your pain.” In other words, face it head on, which is really what meditation or what mindfulness is talking about.  Get in the moment that’s passing right now, it might be painful but that’s reality.  That’s the advice I’d anybody.  Immerse yourself in the situation and it’s not always easy, but it’s real and it will get you through.

Joe:                 Yes, that’s such a unique take on it, Khevin.  I’ve never really heard that perspective.  I think that’s really powerful.  Khevin, so if someone wanted to find more about your journey and the projects that you’re working on, what would they do?

Khevin:            Well, I can certainly share things about my play that’s coming up.  I have a website: malebreastcancersurvivor.com.  That would be a good way.  They can always reach me through any of the pieces that I write.  I think I’ve got something like 150 of them out there now, which really just tells you how much I need to express, as I go through this expedition, as opposed to a journey, but as I go through this cancer expedition.  It’s a wonderful way for me to share with people.  They can always respond to an article and ask questions and maybe give me an idea, something I can write about.  We can talk that way, as well.  I’m always open, via email or phone or hello as you pass on the side of the road.  Let me know, I’m there for you.

Joe:                 That’s fantastic, Khevin.  Thank you so much.  You’re a true inspiration.

Khevin:            Thanks a lot.  I’ve enjoyed so much to talk with you.  I’m going to be your best follower now, because I know you’re doing a lot of these chats.  I’ll be listening to see what you cover.

Joe:                 Fantastic.  Thank you, Khevin.

Khevin:            Alright, my pleasure.  We’ll talk again.  Bye.

Joe:                 Thank you.