Simplify Cancer

Let’s be honest, it’s hard to be positive when cancer has turned your entire world inside out, but we can still look for ways to focus on things that make life a little bit easier, things that give you joy and sharing good times with people that you care about. That’s what we’re talking about today with Ros – she is a cancer survivor who is incredibly passionate about healing and wellness and wrote a book called: “Laughing at Cancer:  How to Heal with Love, Laughter, and Mindfulness”.  Here are some things we cover today:

Laughing at cancer

LaughLife Wellbeing Programs

CancerAid: Australia’s No.1 Cancer Management and Support App

Episode 021: Laugh Your Way To A Better Life Despite Cancer

Joe:                 Ros, what I want to start with first is, I want to ask you how did you find out that you had cancer?

Ros:                 I had some mucus and blood in my stools.  As much as I was concerned, I wasn’t really alarmed because a couple of years before that, I’d had a Yardi Parasite, which we think we got from a family holiday in Thailand.  I just thought, “All right, I picked up another parasite.” I went to the doctor and I’d actually done a stool test and nothing came back.  Anyway, the symptoms just kept getting more and more, and the doctor, she didn’t know what to do with me.  She said, “Right, let’s just get you checked out.  I really don’t expect them to be able to find anything, but we’ll just do it.  Peace of mind.” I had a colonoscopy and woke up from the anaesthetic, and the gastroenterologist said, “You’re one lucky lady, we just removed a polyp, but all looks well.  See you later.”

Joe:                 That’s a good start.

Ros:                 Yes, well, there was no story then.   Then four days later, or five days, I can’t really remember, but basically, the gastroenterologist knocking on the door saying, “Really sorry, got that wrong, it’s actually really nasty and there are some cells outside that polyp.  Really need to refer you onto a colorectal specialist to see what your options are.” That’s what I did.  I went along to the colorectal specialist.  I had my 43rd birthday spent in his consulting suite.  I was essentially given three options.  One was, to do nothing more and to just keep my fingers crossed that the cancer hadn’t spread.

The second option was to do a partial bowel resection, which would have most likely dealt with the situation but again, no certainty because even with all the advances in medical technology, the only way to assess the length in the bowel, is to do a full bowel resection.  You can’t access the length any other way.  The only way that I could with 100 percent certainty know what we’re dealing with, was to opt for a bowel resection.  That entailed, because the polyp was in my rectum and very low down, it’s quite difficult for healing.  I was told I’d be getting a temporary ileostomy, so that bag that sits on the outside of your stomach for three or so months during the healing.

Joe:                 Crap.

Ros:                 Yes, crap on the outside.  Sorry, Joe, I joke.  I asked the question that nobody really wants to ask and once you’ve asked, you think, “Why did I ask that?” I said, “Do you have any idea as to how the likelihood or the percentage of the cancer having spread?” He said he didn’t, he said it could be two to three and then I saw another specialist a week or so later or within that week and he thought maybe three to five.  Nobody knew.  At the time, I thought, I was lecturing in health promotion.  Done a Master of Public Health.  I’ve done quite a bit of work with statistics and I hate statistics.

When we talk about statistics, when it’s someone else and when it’s a population, one/two/three percent, it doesn’t sound that much.  That percentage sitting in me, with two boys aged 12 and 15, it kept weighting heavier and heavier and heavier.  The choice that I thought I wasn’t going to make, which was the full bowel resection, the ileostomy was the only choice for me.  I knew what anxiety or doubt would do to me over time.

Joe:                 Yes, exactly.  That’s the other side, one is the medical adventures that you go through, all these decisions that you have to make.  How did you take it all mentally and emotionally, how did you react to it all?

Ros:                 Well, I really liken it to just having just a ton of liquid led weights.  I just felt so heavy from head to toe.  It was just like totally overwhelmed.  Ironically, months prior, I had actually been asked to facilitate a party for a corporate business.  I was so excited, I thought, “Yay, finally hitting the corporate world.” As it transpired, this was scheduled three days before my major surgery.  I just thought, feeling the way that I was, how would I be able to get myself through this? I did.  I turned up and I almost lost it a couple of times, just pointed out some of the health benefits of laughter and then actually ran a laughter session.

I was amazed that it was the first time since the diagnosis, which had been two plus weeks before that, that I actually felt lighter.  That I felt a lot more prepared to face what was going to be in the near future, a five and a half hour plus surgery.  It’s all-consuming.  When you do get bad news, it’s like darkness descends, the weight descends.  You just, at the time, just can’t shake it.  Maybe people can but it was a big one and totally out of the blue.  It’s not like my family had a history of bowel cancer.  Later in life, there were some little polyps and that, they were always found.  Nobody died of bowel cancer, I’ll put it that way.

Joe:                 Cool.  Ros, there’s a lot of really unhelpful language around cancer, the way we talk about it, what’s your perspective on that?

Ros:                 I’m really pleased that you asked that because it’s actually one of my pet – I wouldn’t say pet hates – but it’s something that I’m really conscious of.  One of the first things that I was really wary of was my boys hearing that mom’s got the big-C, that mom’s got cancer.  From the very onset, I decided that I was going to refer to my cancer almost like the little-c.  As far as I was concerned, until I had evidence otherwise, I had a malignant polyp in my bowel.  I contained it to a specific area as I possibly could, which enabled the rest of me to be in a state of wellbeing.  Far more empowering.

When someone is given a label of a cancer diagnosis, it’s like the whole of a person has cancer.  The same could be said about someone who has diabetes, as opposed to being diabetic.  Or someone has a disability, as opposed to being disabled.  You’re actually empowering and emphasising the healthy and well side, which is especially important to somebody who really needs some healing happening.  I was really grateful in that it still remained the little-C.  Thank god it wasn’t terminal, then it would have been something, the language would have been different.

To some people, it might sound semantic but for me, I knew that I would be able to recover from something much more contained and specific than a whole of cancer diagnosis.  It was something that I really wanted to, in terms of the kids and the way that they dealt with it, I thought it was really important for them that they also knew that mum’s just got something going on in her bowel, in this part of the bowel.  That really is so helpful.

Joe:                 Yes, that’s a great perspective for us, because you’re really putting cancer in its place.

Ros:                 Yes, well, as I say, it’s no different than anything else.  Like, why would you want to dilute the healthy aspect or put more emphasis on this negative thing than you need to.  As I say, contained and specific, and all being well, it’s nothing more than that.

Joe:                 Yes, that’s very powerful, Ros.  In terms of people around you, how did they react, and did they support you in the way that you wanted to be supported?

Ros:                 Again, it’s a good question because the reality is that whenever anybody goes through any form of adversity or challenges, unless you live by yourself on an island, other people are involved.  It’s really difficult, essentially, my role was mum first and foremost.  They were used to mum going and doing the shopping, the cooking, as well as working and etc.  All of a sudden, there was a lot more responsibly placed on other people in the family.  There was a lot of fear.  I think my husband went in to practical mode, what could he do practically to help?

That was the first thing.  The kids, it’s hard, in terms of the nuclear family and who was around me, yes, I felt beloved, yes, I knew I was supported, but it’s too much almost for one nuclear family to deal with.  That’s where you need to know that you can’t get everything from one person.  You need to know, okay, if I’m not getting enough emotional support from the kids or whatever, is there a friend that I can call upon? What can I do to bring into my world the support that I need, rather than just lay back and think, “Shit, I’m just feeling so low, I don’t have the support.  My family just don’t get me.”

In your own way, you identify what it is that you need and in the best way possible, try to communicate those needs.  Which I might just add, I wasn’t great at doing that.  I think that some people find it easier asking for help.  I might not look like it, but I’m relatively fiercely independent.  That can be really hard when you actually become dependent and you go from an independent role to a dependent role, to a person to a patient.  It really is a very emotionally challenging time.

Joe:                 Yes, absolutely, Ros.  You’re so right about saying that it’s so difficult.  It is so difficult to ask for help because on the one hand, you don’t want to look weak, also, you don’t want to put some kind of a burden on someone else.  At the same time, for anyone who’s gone through cancer, there are times when you feel overwhelmed, miserable and alone.  You need to find ways to communicate to people in your life.

Ros:                 That’s right.  The thing is, for me, as I say, I was 42 when I got this diagnosis.  Most people tend to be in an older demographic for bowel cancer.  It’s interesting because now through bowel cancer Australia, they’ve got a peer-buddy mentor system of which I am a buddy.  That didn’t exist at the time.  I just happened to have a friend who knew somebody, a friend of a sister, who lived somewhere in Northern New South Wales and was a similar age to me.  We actually became phone buddies.  That was really important because I could talk to her about things.  The things that you deal with, they’re not necessarily things that your husband wants to know or that your kids need to know.

They’re just really tough, especially all things bowel and where the operation is going to be.  It’s very close to all of the female reproductive system.  There was just a lot of considerations and things going on.  Just to have someone that’d been through it and was at the other side.  I think that was really important to me, to actually have someone in my life at the time, she was six months advanced down the track to where I was.  She was a bit of a beacon of light.  Right, well, she has similar circumstances to me and look where she is now.  Isn’t that fantastic? That’s where I’m going to be.

Joe:                 Yes.  Totally, Ros, it’s an incredibly empowering experience talking to someone that’s one step, several steps ahead of you.  I had testicular cancer, which is also a bit awkward because it’s down there.  It’s my balls, right? It’s been really helpful, when I was in hospital, it just so happened that I was put in the same hospital room with a guy who was also in the same situation.  It was really great to hear his perspective on what helped him deal with it in terms of managing his energy and how he responded to treatment and all of that sort of stuff.  Yes.  That’s something that I would highly recommend to anyone going through cancer, is to really find people who have been through it, whether that’s online, whether that’s in-person, wherever that can be done.

Ros:                 Yes.  We’re both involved with CancerAid.  They’re trying to also create a community.  I think that it’s so important because it’s such an isolating, scary time, but the more you can connect to people and just feel like you’re not alone.  That’s interesting, I was actually just reading something about loneliness.  Loneliness is a subjective thing.  If you feel alone, even if you’re in a crowd of people.  Loneliness, over time, it’s really damaging on our health.  It’s equivalent to being a heavy smoker and it can make you 14 times more prone to chronic illness over time.  In the short spurt of time, with the loneliness and the isolation, in order to heal, you need to be in the best mental state that you can be.

You need to feel that there are people around you that really care about you when you’re feeling lonely or alone, you might just feel that they don’t really get it.  They can’t get it.  You start to withdraw.  I think that’s quite a natural thing.  That is not a constructive way to empower healing and your mental state.  The opposite of loneliness and all of that negativity is actually tapping into a positive mindset, which is far beyond people saying, “It’s important to be positive.” Again, that’s something that I have some issues with because being positive is very passive.

You need something active.  You need stuff to actually go from positive to positivity.  Positivity is where you can actually change the way that your brain functions.  You can change tapping into your happy hormones, your dopamine, oxytocin, serotonin, endorphins, all of those things, which really assist whatever else is going on.  Whether you’re having medical treatment, whether you’re going through emotional stuff, if you can tap into this positivity, it really just helps people advance in their wellbeing so much more, no matter what’s going on around them.

Joe:                 Yes, absolutely.  For me, positivity is only about looking into the future and negativity is about looking into the past, that’s all that is.

Ros:                 Yes.

Joe:                 Ros, what’s helped you the most in terms of dealing with cancer, like, mentally and psychologically?

Ros:                 Talking about positivity, essentially, very early on I adopted the mantra, let the doctors take charge of my illness.  That I took charge of my wellness.  Very early on, I started writing.  Now, journaling is known to be a very therapeutic tool.  For me, it was just something natural that I wanted to do.  It was for me.  Within a couple of entries into my diary, I started to have this imaginary discussion with the future readership, because I just realised whatever I was going through, I was sure that there were other people that were going through similar stuff, like the specific particulars would have been different, but essentially thrown into that whole new unknown scary world.

As you know, I am a laughter yoga facilitator and I had for years on the side been running laughter sessions for people and telling people about laughed being the best medicine.  The irony is, that after bowel surgery, laughter is the last thing in the world you can physically do, even if you wanted to.  You could barely breathe.  It took about five or so weeks until I could laugh more comfortably, and it wasn’t like torture.  I had to really think, right, so this thing that I’ve taken for granted all of my life, it’s gone temporarily.  What can I do to tap into those endorphins? Endorphins being our bodies endogenous morphine.  30 times more powerful than the synthetic version.

I knew they were powerful.  I knew that in the sessions I had run with people doing laughter, I had asked if people before the session, to make a mental note if they had any pain or discomfort, then I’d ask them after the session if they had that? It was amazing how many people forgotten, “Do I have a headache?” I knew that endorphins and tapping into endorphins was really powerful.  The question is, how could I tap into endorphins when I really didn’t feel like doing so and without the laughter.  Laughing by yourself when you’re feeling crappy is just wasn’t something that I felt that comfortable about doing.

Joe:                 It’s not easy.

Ros:                 No, it’s not easy.  There were a few things that I did which were really, really powerful.  The first thing being, smiling mindfulness, essentially breathing very shallowly initially, but just sitting with a smile and directing the smile from my face into particularly the areas that were filled with pain and imagining, visualising this powerful smile just residing in that part of my body.  Just those endorphins filtering through.  It was that in conjunction with the breathing really changed the way that I felt instantaneously.  That was a daily practice.  It was not like I put a time limit on it, but probably 15/20 minutes.

The other thing that I did, and I still do, like I do with the smiling mindfulness and I highly recommend, especially because I do quite a bit of coaching work.  I found that it sounds so simple, but it has been so powerful, is recounting three things that went well in your day.  Now, this is evidence-based stuff, Joe, this isn’t stuff that I just dreamed up.  This comes out of the school of positive psychology.  Basically, they did studies with people with chronic anxiety and depression.  After a 12-week study, that even after 6 weeks, they found that the group that recounted three things that went well in their day had a significant increase in positive effect and a significant decrease in negative effect.

Much more positive feeling, much less negative feeling.  What that basically does it, I did this practice as I was just lying in bed for the night, it essentially put a break on the ruminating thoughts, because when you start to think of things that went well or things that are positive or good, you’re not thinking about the things that are bad, negative or didn’t go well.  Even if they were small things like, wow, I managed to walk down three houses today, that’s so cool.  Or, I had such a nice visitor today, or I managed to eat something without significant abdominal discomfort.

Essentially, what that does is, it trains your brain to notice the good and the more that you notice the good, the stronger that neural pathway to noticing the good is.  It weakens the tracks in the brain that are wired to always thinking about all the things that didn’t go well.  What you bring your attention to, what you focus on, that is what grows.  You can either choose to focus on all the stress and all of the fear and all of the frustration.  The F-words, that I call them.

Joe:                 Nice.

Ros:                 Or, you can actually focus on – to really make a conscious choice to focus on the good things.  These micro moments of joys.  The small things that went well because the more that you actually look for them, the more that you will see.  That’s really important for somebody in any sort of terms of being connected to their mental health and enhance people’s wellbeing.  Conscious gratitude practice was critical to me, the smiling mindfulness was really important.  The other thing that was really powerful for me and I highly recommend is reframing.  Now, we had a little bit of a chat before about the big-C versus the little-C, that is an example of reframing.

Reframing the language around cancer to something that sits better with you.  I’ll give you another example.  I never liked the terminology of a bowel reversal, which was the operation I was going to be having to delete the ileostomy and reconnect the bowel.  For me, reversal was going back to the way things were, it was negative, I didn’t want that negative terminology.  In my way, I reframed it that I would refer to this operation as a bowel reconnection.  It’s so much more positive, it’s future focused, and, again, I went into that operation feeling a lot more empowered than had I gone in – this is just for me, it’s not necessarily for anyone – than saying I was having a bowel reversal.

I was having a bowel reconnection.  There are so many other ways that we can reframe to actually find a little glimmer of hope, to find some positivity in a negative or really challenging situation.  It’s really important, if you can actually write down a particular challenging time that you’ve had in your life and try to just envisage, was there some unanticipated positive something that happened? Or did something make you smile or laugh along the way? Is there anything good that has come out of that? Is there something good that you can see? What that actually does is help your brain recall that incident differently.  It actually takes away some of that trauma.

It takes away some of that pain.  It taps into a lot of that stuff that we even carry around in our subconscious mind, we’re not even conscious about it.  It helps us change the way we remember that particular episode.  I think that especially people that have been going through intense medical regimens, that can be really helpful.  Sitting with trauma, I don’t think we understand how much trauma we carry around with us, it’s long-term, it’s not a good thing.

Reframing, smiling mindfulness and conscious gratitude were things that really powerfully helped me create, and I won’t say maintain because it was an ongoing challenge, that emphasised that positive mindset.  Now, six years down the track, I know that even if I might start down the, “This is happening…” I can stop myself, I’ve got that mindful awareness now to say, “Right, that’s not helpful, let’s think, is there anything good that’s come?” In this moment, what can I appreciate? In this moment, what, if anything, there must be something that is going well that’s okay.

Joe:                 Yes, that’s fantastic, Ros, that you filter things through hope and try to look at things from a different perspective, from a perspective which is a lot more helpful.

Ros:                 Yes.

Joe:                 Ros, I know that laughter and cancer don’t necessarily always go together, we just talked about that, but I heard about the laughter yoga from my friend Khevin.  I know you have some unique strategies around that.  Could you talk about what that is for you?

Ros:                 Laughter is a very powerful modality, when you laugh, it’s very oxygenating.  You try laughing without breathing.  You can’t do it.

Joe:                 Yes.

Ros:                 Again, it’s tapping into those endorphins, it helps strengthen our immune system, it lowers the blood pressure.  Basically, it’s an extraordinary stress buster.  Any situation that you can have a laugh about, not necessarily into someone’s face or being disrespectful, but in that respectful context, choosing to laugh is a really important thing.  It’s about not leaving laughter to chance.  The times that we tend to need to laugh the most, for the health benefits of laughter, are the times when we feel like laughing the least.  Getting a bowel cancer diagnosis is one of those moments, it’s not really a laugh-out-loud moment.  Being able to actually choose to, for example, to either in your own time watch comedy as opposed to the news.

Just in your own time, choose what friends that you decide to associate with, people that bolster your mood and make you feel good, or the ones that think about all the worries and fears that you haven’t even thought of and bring you down.  It’s about deciding what you do in your own time to bring more laughter in.  For example, it’s really powerful in terms of anxiety, to counter anxiety and depression.  I remember 12 months down the track, I actually had my follow-up, a CT scan, and a follow-up appointment with the colorectal specialist.  He said, “Everything is looking good, Ros.  Although, there’s a little growth on your liver and I think that’s worth getting checked out.” It’s like, what? Of course, I went back to the gastroenterologist that had done the initial colonoscopy.

He said, “Listen, I’m pretty confident that it’s a benign liver cist, but I’ll organise for an MRI, but you’ve had so much going on, you can wait a couple of months.” Again, it’s like the irrational part of my mind kicked in, it’s like, hold on, you told me that my polyp was fine, and it wasn’t.  It’s like, I’ve got this thing on my liver.  I ended up having a post-traumatic response to 12 months down track, to so much what I went through.  I was so strong about all of it.  Then I was thinking, gosh, if this is like anything that’s not benign, I don’t know how I’m going to cope.  I’ve got really quite chronic anxiety.  I really sat, I did a lot of breathing mindfulness.  A lot, a lot, a lot of conscious breathing which definitely helped.  It wasn’t enough to boost my mood.

What I would do was, I wasn’t comfortable about laughing just out loud at home, because you’ve got to find something that works for you.  For me, when I was in my car, I would pretend that I was just having a hilarious conversation with someone and literally, laugh, laugh, laugh, laugh, for like a few minutes at traffic lights, whatever.  It didn’t worry me that people would look in and think, “She’s having fun with a friend or something.” It was the most powerful thing that I could do to essentially help eliminate a lot of anxiety, it really, if my anxiety levels were, say, at an eight, they would be brought down to a four in moments.  That sounds crazy, but it is so powerful because, again, when you’re laughing, you’re in that moment of joy.  You’ve left all of your troubles behind.  You’re flattering your system with these endorphins.

You’re also, because of the breathing aspect, as well, you’re basically tapping into your parasympathetic nervous system, which is our other nervous system to the sympathetic nervous system.  What happens on a daily basis or when we’re going through stress or basically, probably a lot of listenership, would be able to relate, is that this stress system, this sympathetic nervous system just doesn’t switch off.  It’s in overdrive.  We’ve just been bombarded with all of these things that we’ve got to do and the next test results and waiting for that test result and thinking about what might be.

The parasympathetic nervous system is the nervous system that calms our whole body down.  It ushers that feeling of calm into our body.  Breathing helps really trigger what’s called the relaxation response and then the laughter, not only is because you’ve got to breathe to laugh, but it taps into the endorphins.  It’s just like this instantaneous circuit breaker.  It just changes your whole physiology.  It’s making decisions, choices to laugh out loud.  If a re-run of Seinfeld on, rather than just sit on the couch with a smile, it would be to actually consciously choose to laugh-out-loud, and really laugh, and share a laugh with people.

One of the most powerful things when I came out of hospital and about week-five when I could start to laugh again was our family of four squeezing onto our couch.  Watching a comedy.  Just as a family, it connected us, it just helped get rid of a lot of the stress and the anxiety and it’s like, yay, we’re laughing again.  Mum’s okay.  We’re laughing.  It’s really – some people can be a bit disparaging about it.

Honestly, it’s such an important thing.  I don’t think that we would have been given the gift of laughter if it wasn’t important.  We smile, and we laugh before we talk.  That’s how we used to communicate.  It’s really important that the problem is that when we go through stuff, the laughter gets deeper and deeper within.  It’s like you quite rightly don’t feel that it is a laughing out loud time.  In some way that feels right to you, it’s essential, it’s really essential for your mental wellness, to the people around you and yes, it’s a beautiful thing.

Joe:                 Yes, absolutely.  That’s fantastic, Ros.  Tell us about your Laugh Out Loud project, how did that come about?

Ros:                 In aged care, I was, at the time, lecturing at the Tribune University and I had got chatting to one of the nursing staff there.  She had a secondment with a large age care facility.  Essentially, we devised a laughter activities program for 35 age care facilities across Victoria.  Where 30 minutes for 6 weeks we would run 30 minutes of laughter.  It was laughter yoga.  The laughter exercises and the breathing and the clapping.  It was really powerful.  We measured blood pressure and heart rate before and after each session.  We also did it a couple of times at the beginning, the middle and at the end of the study, we measured out positive and negative effect.

Also, happiness.  Again, it was really powerful.  Thinking that in six weeks, we found the blood pressure consistently dropped at the end of the session, not too low.  There was less negative effect.  Just watching people social connect, just after a session or before, or people with dementia who had very low levels of communication, one lady who barely talked, but when I went before, she’d seen me coming down the corridor, “There’s the laughter lady.” It’s like, wow, that’s amazing, she can barely talk, “Here’s the laughter lady.” As I said to you, laughter is something that we’re born with and it’s one of the first means of communication.

The amazing thing was that even people with dementia could laugh.  It came back to them.  Even once their language had gone and even if they couldn’t laugh, they could smile.  Or even just being in that atmosphere, in that environment, you could just feel a shift.   When you get older, you tend to get less active, the wonderful thing is, there were some comments of people, they felt that they were getting an aerobic workout.  They felt so much better for it.

Even people with really limited mobility could do this.  after that particular project, we then trained staff, so still to this day, many of the facilities are running various laughter programs or adding laughter activities as part of already existing activities.  If they’re doing gardening, they might pretend they’ve got a spade and laugh.  As they’re digging in the ground and pulling out this beautiful carrot or whatever it is.  Yes, that was a really beautiful project to be a part of.

Joe:                 Yes, that’s really spectacular.  To be known as the laughter lady in your life, I think that’s exactly what you want.

Ros:                 Yes, it certainly beats the anxiety lady or the depression lady.

Joe:                 Yes, absolutely, Ros.  Tell us about your book, as well.

Ros:                 Yes, okay.  As I said, I started writing journals, as I say, very much, it started with myself.  I found that at the end of each chapter, I was just including sticky notes of question to people.  It’s like, I wonder if other people’s friendship circles change, or was there some part of their diagnosis terminology that they weren’t happy with? Did they reframe the language around that? Then I’d also include just various techniques that I would consider, like the conscious gratitude practice or smiling mindfulness, or walking mindfulness.  Things that I did that I experimented with.  I think before my experience with the bowel cancer, in a way, all these things were a bit theoretical.

When you actually have to live them, then you really feel and find out if they are right for you.  I would experiment with lots of different things, like reframing and that.  Quite early on, I made a promise to myself that I wasn’t just going to keep it to myself, that especially like you’ve had testicular cancer, people don’t like talking about bowel cancers.  I could get in trouble saying this, but there are sexier cancers and in terms of funding and things like that.  I’m quite comfortable talking about bowel cancer.  I’m quite comfortable talking about these things that other people aren’t comfortable talking about.

It’s really important to have conversations about these things that other people aren’t comfortable talking about.  It’s really important to have conversations about these things.  To feel that you’re not alone.  What you’re doing is so important, Joe, these podcasts, really hats off to you.  It’s really important for people to feel that there are other people going through similar things and perhaps these things that you didn’t even dare to think about or vocalise, I’m happy to put my experience to help other people.  I’m really happy to do that.  Thankfully, my family were on board, so I had, at the end of a year or so, about three journals, then over the next year, I wrote another one, as well.

There were four journals.  I had decided at the time I didn’t want to do anything with them.  There were two things about it.  I didn’t want to be defined by bowel cancer, I wanted to spend more time in the wellness world.  The other thing was, I had this fear that I would be stepping back into a dark space and I just needed time out.  The interesting thing is, that a few years after that, which was prompted by various friends getting not nice diagnoses.  Then I said, right, it’s time.  I went back, I dug out my journals and I realised that they actually weren’t as negative as I thought.  I think I must have been deluded.

I wasn’t even on drugs.  I don’t know why I was, but I realised that they were actually a really useful and positive way to enhance other people along their illness to wellness journeys, as such.  My first working title was: I Heal, You Heal.  Then I really wasn’t comfortable about the laughing at cancer, as a title, because the title: Laughing at Cancer, how to heal with love, laughter, and mindfulness.  The last thing that I wanted was for people to think that I was laughing at cancer and making fun of it and it’s a funny matter, because it’s not, people die of cancer tragically, or go through a lot of pain.  For me, laughter was more a metaphor, really, for finding something that we can do to orientate our mindset to positivity opposing adversity.

My book is essentially structured about, so each chapter is something that I’ve been processing or dealing with.  At the end of each chapter, there’s reader engagement, healing strategies, techniques, etc.  As much as it’s about me, it’s not.  It’s really an invitation for other people to explore aspects of their own life, of their own life journey really.  I have been very positively overwhelmed by even people who haven’t had cancer, that they’ve found it really helpful.  Even my 86-year-old, my husband’s uncle, send him my book, I really want him to read.  He’s told me that he now every night he thinks about three things that went well in his day.  He feels so much better for it.  It’s such a privilege to be able to birth a book and to get feedback.

To feel that in some small way, perhaps I may have inspired a bit of change, or I may have been able to just help someone connect to their joy, connect to their positivity, where they thought that it was the last thing in the world they could do.  In a way, I’m trying to give permission to people to allow that to happen.  People feel that if you’re going through grief or if you’re going through a cancer or something like that, that you’re not entitled to joy, to happiness, to having some pleasure, but it’s really important to make those moments, to not leave them to chance.

Joe:                 Thank you so much, Ros.  That’s such a fantastic point.  Thank you so much for your brutal honesty.  Those words really all need to be said.

Ros:                 Thank you so much.  If anybody is interested, my book: “Laughing at Cancer: How to Heal with Love, Laughter, and Mindfulness”.  It’s available online, bookshops.  If you know someone who really think might want a personal inscription, please go to my website: laughingatcancer.com.  Send me an email and I’m happy to throw in the postage, so you wouldn’t pay anymore.  I’m happy to write in it for someone because I know that sometimes that can just make a bit of a difference to someone.

Joe:                 Fantastic.  Thanks so much for your time and for sharing your perspective.

Isn’t it true that cancer brings home the reality that you’re not forever and so you ask yourself, what happens if I die?  Have I been the person that I’ve always wanted to be? How are people going to remember me?   Joseph answers these huge existential questions every single day. He’s a rabbi who does some unbelievable work in a hospice helping people who are facing cancer to bring out life and make peace with it. Here are some things we cover today:

Never Long Enough by Rabbi Joseph Krakoff

The Jewish Hospice and Chaplaincy Network

Episode 011: Who Is Going To Stay With You Through Cancer

Joe:                 Joseph, I’ve just read up on all the incredible work that you’re doing in the hospice, how did you get started?

Joseph:            I was a congregational rabbi for about 16 years.  I found in the course of doing that work that I was spending a lot of that time in end-of-life care.  I was really drawn to the people that were so much in need.  There was a lot of vulnerability to that end-stage time period, end stage illness, both from the patient’s perspective as well as the family’s perspective.  I’ve really spent a lot of time in the hospital holding people’s hands, just really helping them reconcile relationships that they wanted to reconcile before they died.

After 16 years of doing this over and over again and really feeling like I was making a meaningful impact, I decided to do this full-time.  In the summer of 2014, I joined the Jewish Hospice and Chaplaincy Network here in Detroit.  The work that I do every single day, we manage almost 200 patients a day that are facing end-of-life illness.  Some in Hospice care, some not yet in Hospice care, some in palliative care.

Treating them, their pain and their symptoms, getting them all aspects of help from social work care, to spiritual care, which is what I do, to bringing the music and art and all kinds of different enrichments that will uplift their dignity.

Joe:                 Joseph, that’s so fantastic.  I don’t have words to describe it.  Cancer is such a really tough time for someone, you’re confronted with so many things, you’re confronted with ultimate questions about life and death and your place in the world.  I guess do any themes come up over and over that you see it for yourself?

Joseph:            Yes, a lot of times, I think a common theme, a common thread, is people are really reflective about the life that they lived, the values that they lived.  If they have children or not even children, but family members, nieces, nephews, do they pass those values onto their loved ones?  That’s a big piece in terms of values and did they live their values?  That’s number one theme.  Another theme is the reconciliation of relationships.  Are there relationships that need to be reconciles or at least an attempt at reconciliation before they leave this world, so that they can leave this world with a sense of purity of mind and spirt and soul?  It’s also a time for honesty too.

A lot of times, what I find is family members don’t want to admit that their loved one is dying because of course, it’s very hard to deal with emotionally, psychologically.  What I find is that more often than not, a person that’s dying wants to be honest about it, so that they have a chance to say goodbye.  Giving that person an opportunity to say goodbye, together their family, together their friends, together to say goodbye is really an important meaningful ritual I think that transcends religion, I think it’s part of the human spirit.

A lot of people die suddenly and don’t have the opportunity to say goodbye.  If you have an extended illness, a lot of times, you do have that opportunity.  I think honesty around that is very powerful and is also a theme that I see quite frequently.

Joe:                 That’s so profound, Joseph.  You also touched on reconciling relationships.  What advice do you have on that front?  How do you go about doing that?

Joseph:            That’s a very a great question with a complicated answer.  What I say is, the best way not to have to worry about reconciling relationships, is not to hold any grudges in the first place.

Joe:                 That’s tough.

Joseph:            It’s tough, it is tough.  It’s very tough.  People wrong us, and we respond to that.  we feel offended, we get angry.  I think that one of the things, even before end-of-life situations, is if there’s a way to give other people the benefit of the doubt.  Really, to think, they did not mean to offend me, they’re having a bad day, this is not about me, this is about them.  To really live our lives that way where we are not putting ourselves in situations to be abused or mistreated, but to give people the benefit of the doubt.  If they do it again and again and again, then obviously it changes the scope of a situation.

The best way not to have to worry about reconciliation at the end of life is to try to maintain those relationships throughout life.  That being said, that’s not always possible.  It’s not always possible to reconcile relationships at the end of life, as well.  There are many families that I’ve dealt with over time and I’m sure will deal with in the future, where family members don’t come to the funeral and don’t have nice things to say.

It’s obviously a very sad situation because you want to try to be able to create a sense of peace, a sense of harmony in a relationship.  One of my teachers once said, and I think it’s very true, what you don’t have in life, you don’t have in death.  To the best of our ability, to live our best lives in relationship with one another and to try not to hold grudges, or if there is something that’s bothering us, to deal with it right away.  Ultimately, it will make the end a lot more peaceful.

Joe:                 That is so true, Joseph.  I know you also touched on living through your values and being true to yourself.  How do you go about doing that?

Joseph:            I think a lot of it is self-awareness.  A lot of it is about how well do we know ourselves?  How well do we know what we stand for?  What we believe in?  Do we live that?  Are they in line with one another?  Each and every day, are we living our best lives?  Are we living the way we want to be living?  If not, why not?  I think that’s just a piece of it, obviously, it’s a lot more complicated than that.

Joe:                 Yes, absolutely.  Joseph, many young people have a difficult time reconciling their heritage and modern life, what advice do you have on that front?

Joseph:            Well, I think that all world religions have some values and some morals and ethics that speak to people at every age.  Sometimes rituals that I know don’t, but because they feel like, that’s the rituals of yesteryear, those are the rituals that people have been doing for years.  They don’t relate to me.  What I would say, as well, why don’t they relate to you?  Is there a way that you can redefine that ritual or redefine that teaching, so that it speaks to you?  Also, there’s power in doing what our ancestors have done for generations and generations.

One of the other things I do as Rabbi, a lot of, is I do a lot of weddings.  While I’m on the end-of-life most of my days, my work days, I do a lot of weddings on Sundays or Saturday nights after the Sabbath is over.  When I meet with the young couple, we talk about some of the ancient rituals that even just around wedding that have been done for generations.  A lot of times, when I explain those rituals and ask them, what do they mean to you?

How can they speak to where you’re at in your life?  They really take some time to say, “Do you know what?  I’ve never thought about this.” That can relate to this or maybe the fact that my grandparents or my great-grandparents did this actually has more meaning than I realised.  I think a lot of it is about education.

Joe:                 Yes, exactly.  I guess some of those things are obscured by certain experiences in life that don’t really serve us.

Joseph:            Absolutely.

Joe:                 Yes, fantastic, Joseph.  What does, according to Judaism, what happens after we die?

Joseph:            There are a lot of different theories, unfortunately, nobody has really come back to tell us.  I wish that wasn’t the case, but most thinking in Jewish circles centres around our physical body dies and our physical body is buried, ideally in the ground.  When we come into the world – let me step back for one second – when we come into this world, we believe that God puts into a body that’s been born a soul.  While we’re alive, that body and that soul are together.  In the process of getting ill and getting ill toward the end of life, so an end-of-life illness, what’s happening is the body is getting sicker and the soul is pure.  Nothing is happening to the soul.  The soul is what makes us who we are.

The way the body is made is that it’s going to wear out.  If you think about death, really death is that our body has at some point been exhausted or let us down or been injured or whatever it is, but it’s our body ultimately that passes.  We believe that in the process of dying and in death, our physical body expires, our soul is released back into the cosmos, back into the universe, our soul lives either in a world of souls for the next stage of that non-bodily existence or that soul can come back into the physical world and go into another body.

There are probably souls that have lived in many bodies in the physical world.  There are also souls that live in a world of souls, some go on to be angels, and really that’s at the discretion of god.  We really do believe that this physical world that we live in together is not the end.  It is part of a continuum of life, just different aspects of life.

Joe:                 That’s a pretty empowering statement, isn’t it?

Joseph:            I think it’s incredibly empowering in a lot of ways.  When I say to family members and they say, “Rabbi, what do we believe?” I lay it out the way I laid it out for you, and I want them to figure it out for themselves in terms of their theology, but what’s powerful, I think most powerful about it is that means that there is the potentiality of seeing loved ones again, of seeing the souls of loved ones again.  To say that we are reunited with those who have gone before and that they just went onto the next world sooner than we did but that it’s not the end.  We do believe also that souls that have been together in one world congregate around one another in other worlds, in other non-physical worlds.  To me, that’s incredibly comforting and I think that to provide comfort, look, if it’s not true, I guess we’ll find that out eventually, but if people are comforted by that belief, I don’t see anything wrong with it.

Joe:                 Yes, absolutely.  I couldn’t agree with you more.  Joseph, in terms of if we look at world religion, is there any common ground when it comes to end-of-life and what happens after death?

Joseph:            I think the common ground more than anything else, and I’ve done a fair amount of studying of different religions and of lots of friends who are clergy and other faiths.  A lot of it comes along the lines of legacy.  We all want to leave a legacy.  We all want to be remembered.  Nobody wants to be forgotten, everybody wants to be forgotten and for people to believe that their life had value.

I think whatever we believe in terms of this life, what we believe about what happens in the future life, I think there’s a common human element that we all feel, which is that we want our lives to have meaning.  We want our family members and our friends to have been inspired by us, to have been touched by us, to have been maybe even changed for the better because of something we said or did along the time.  We want to have an impact, I think that goes literally across all religious lines.

Joe:                 Yes, absolutely, Joseph, that is so true.  Also, with cancer, obviously, that’s incredibly impactful on the person who’s potentially facing end-of-life or going through treatment, but it’s also incredibly tough on the caregiver and they don’t really get enough attention, do they?

Joseph:            Caregivers, I believe, are god’s angels on earth.  Whether it’s a family caregiver or a private duty hired caregiver, a nurse, a doctor.  We are blessed to have people around us that literally care, care deeply.  Unfortunately, caregiving takes its toll in a serious way on caregivers and really has the potential even to shorten the life of a caregiver, depending on how long, studies show, depending on how long they’re doing this caregiving.  Caregivers definitely they do it out of love, they do it from their heart by in large, some do it out of obligation, as well.  I think caregivers are often overlooked and caregivers really need to be celebrated and appreciated and recognised for the amazing love and care that they provide.

Joe:                 Is there anything do you think a caregiver can do to help themselves, because it’s tough on them as well and sometimes I guess they forget to do something for them, too?

Joseph:            Yes.  I think if there’s any way for the caregiver to work out a system, whereby, they can get away from a few hours here and there to exercise or to read a book or to do what inspires them.  It can be all-consuming, and it can be all-consuming very quickly.  To pay private caregivers is not an inexpensive venture at all.  Not every situation allows for that, but in an ideal situation, if there can be a team of caregivers so that everybody gets a break, that would be the best situation imaginable.

Joe:                 Yes, absolutely.  Joseph, what about someone who’s maybe going through cancer and maybe they don’t have the support that they would like to have in their life from people around them?  What advice do you have on that front?

Joseph:            I would Google or go online and look for cancer support groups in their area.  Unfortunately, cancer is rampant, I only pray that there’s a cure in my children’s lifetime.  I know they’re working furiously on trying to find a cure for cancer, but in the interim, I think something like cancer or any kind of illness that is a serious type of terminal type of illness has the capacity to rock your world in a way that you never ever imagined.  Even if you’re feeling good and doing well.  I think life in general is extremely complex and hard to go it alone.

Through Synagogues, temples, mosques, community centres, to Google cancer support groups, they’re all over the world now.  I think to try that out and see how that helps or the impact that it can have is something that is important for cancer or for any kind of illness that a support group would be helpful.

Joe:                 Yes, that makes so much sense, Joseph.  I know we touched on reconciling relationship.  I want to dig into that.  Sometimes we hurt those people that we love, is there any way to makeup and maybe say sorry?

Joseph:            I think that sorry is a very powerful word if used properly.  We all know from kids that their parents tell them to say sorry and they say, “I’m sorry” and they’re not really sorry.  They say it because they want to have dessert or whatever, they don’t want to have their iPhone taken away.  What does it mean really to be sorry?  I think that the Jewish definition of an apology is very powerful because the first thing, of course, you need to do, is you need to recognise what you did wrong, which is hard for a lot of people.  A lot of people don’t want to think about what they did wrong.  We all do wrong.  We all make mistakes.  We’re all fallible.  God didn’t make us perfect.  Only God is perfect, God didn’t make us that way.  We need to recognise that from time to time, we fall short, we make a mistake.  In Judaism, the Hebrew word for sin or making a mistake is Het and Het means literally like in archery, you’re always trying to hit the bullseye, but you don’t always hit the bullseye, sometimes you miss the target.

To make a mistake in Judaism is, it’s not catastrophic.  Depending on what it is, obviously, but usually, it’s not catastrophic.  It means that you missed the mark.  In archery, when you miss the mark, what do you do?  You try again.  You try to hit the mark the next time.  We can do that, we have the ability to try again.  Before we try again, we have to go to the person that we offended, the person that we hurt in a humble, sincere, authentic way and say, “Listen, I missed up, I am so incredibly sorry that I hurt you in that way, that was not my intention.” Again, every situation is different, but I’m hoping it was not my intention, you know?  Sometimes it is.

Expression that I am really sorry, your relationship, our relationship, our friendship means something to me, and I don’t want to lose it, I don’t want to sacrifice it, can you please forgive me?  That is the process that you through in terms of a sincere apology.  The apology only is valid, the apology only takes affect when you’re in the same situation the next time and you act differently.  You’ve changed your actions, so you don’t make the mistake the second time that you made the first time.  That’s when your apology, even though you’ve apologised, that’s when your apology really is cemented, because you learned from your mistakes.

If we could all learn from our mistakes, think about how much better the world would be.  If we would take responsibility for what we do wrong, learn from our mistakes and try to do better next time.  Look, we’re going to mess up somewhere else, but that’s okay, so we learn, and we learn, and we learn, do you know what?  That’s what life is all about.  We should be learning new things about ourselves, about each other every single day.

Joe:                 Yes, that’s very powerful, Joseph.  I think that goes back to the earlier theme when you were talking about honesty.

Joseph:            Yes, absolutely.  I think about, again, going back to the notion of the couples that I counsel, I do a lot of counselling and as well as the families I deal with too, at the core of every successful relationship is a sense of honesty and the bond of trust.  If there’s honesty and trust at the core of a relationship, that relationship is going to endure.

Joe:                 Yes, that’s very profound, Joseph.  I read a really touching quote on Twitter when you were talking to a 100-year-old woman and you asked her, what is the best part of being your age.  She answered, “No more peer pressure.”

Joseph:            Yes.  I got a kick out of that, as well.  I’ve heard that before, so I don’t necessarily think that was original, but if you think about it, to live to be 100 is quite an achievement.  The truth of the matter is, those that live to that age often outlive a lot of their friends.  In fact, I was just with a woman recently who has a whole new group of friends 30 years younger than she is because she outlived all of her friends.  Peer pressure, if you think about it, peer pressure causes us to do things that we might not necessarily do.  You’ve got to be careful of peer pressure.

Joe:                 Yes, that’s right because you talked about leaving a legacy, but I guess you don’t want to live up to somebody else’s expectations, you want to live up to your own beliefs and your own values and your own expectations in life.

Joseph:            Absolutely.  I think you want to be your best self to your values and what matters to you, your moral, ethical approach to life.  The other thing is that I say to people, too, is that in terms of expectations, just in general, that if you lower your expectations, and you don’t hold other people to such a high bar, more often than not, you will be pleasantly surprised.  Sometimes the issues that we get into with one another is because we hold each other to these ridiculously high expectations.  Expectations often have the power to disappoint us, we can be disappointed because people don’t live up to what we think they should be doing.  If we lower expectations, we can be pleasantly surprised and that can also help the relationship.

Joe:                 So true, Joseph.  I loved your quote also on Twitter, when you said that no matter how hard we try, we make mistakes.  One of the most liberating teachings in Judaism is that each day, we get a second chance.  What does that mean to you?

Joseph:            Well, I think that, again, one of the teachings of Judaism that inspire me and there are a lot that inspire me, but the idea that, again, it’s not about perfection, it’s not about getting it right, like I said before, it’s about learning and growing.  Every day, we should be growing personally, we should be growing emotionally, we should be growing spiritually, growing psychologically, we’re growing physically whether we like it or not, some of us are growing up, some of us are growing out, whatever it is.  It is about growth.  It’s about personal growth.  For the most part, if we make a mistake and we take responsibility for it, we do get a second chance.

If you think about it from a biblical perspective, Moses came down with the ten commandments and he saw the people worshiping the golden calf and he broke the tablets, he didn’t have god’s permission to break the tablets.  Thankfully, god gave him a second chance, God allowed him to come back up the mountain and get a second set of tablets.  I think that’s a profound metaphor for we all have the opportunity to get a second chance, to do better, and each new day gives us the opportunity to start again, to start afresh, to do better.

Joe:                 Yes, that’s fantastic, Joseph.  Can you please tell us about your book and how did it come about?  How can someone go about finding it?

Joseph:            Sure.  As we said at the beginning of our time together, I’ve been drawn toward end-of-life care, one of the things that I did when I was in school as a rabbi, training to be a rabbi is I wrote a poem called: Never Long Enough.  The poem was really a reaction to what I had seen in homes after somebody had died, where a family member or friend, well-meaning, usually it was a well-meaning friend or acquaintance, would go up to the mourner, offer their condolences and then say something like, well, at least you had them for 80 years.  My feeling was, well, I wanted them for 90 years, or I wanted them for 100 years.  What do you mean at least I had them for 80 years?

My feeling was that 80 years, okay, that’s great, it’s never long enough, we never want to lose the person that we love.  We never want to say that it was love, that that 80 years was enough, and I didn’t need anymore.  We don’t feel that way, we bond with people and we develop deep relationships with people.  I wrote this poem called: Never Long Enough.  Which is really a reaction to that.  The other things I would hear in a Shiva house is that they’re in a better place.  Some people might believe that.  That’s their choice to believe it.  I don’t want to go in and tell a mourner that the loved one who died is in a better place, because as a mourner, I would say, well, a better place is here with me.

I wanted people to be more cognisant and more careful of the things that they say.  They don’t mean to be hurtful, I don’t believe they mean to be hurtful, but we don’t know what to say when somebody’s died.  It leaves us speechless to a certain extent.  Everybody wants to come up with the most brilliant thing to say, so that they can instantly heal the person who is bereft.  There are no brilliant words.  The brilliant words don’t exist.  What exists is, you go in and you hug someone, you hold their hand, you give them a kiss, and you bring them my book.  My book is, not only my book but a book with my co-author, Dr.  Michelle Sider, who’s an amazing artist, who illustrated this poem.  It’s really all about helping people remember their loved ones and realise that everybody is on their own timeline when it comes to mourning.

It’s not about it being over in the period of days.  You go to pick up the phone a month later because you used to call your loved one every day.  This is really a book that gives permission to people to mourn at their own pace and to embrace the memory of loved ones.  The book is called: Never Long Enough.  It’s available on Amazon.com and Barnesandnoble.com.

Joe:                 Well, that’s incredibly touching and thank you so much, Joseph for your time.  Thank you so much for what you do in the world.

Joseph:            Thank you.  Thank you for the opportunity to talk with you today and, again, I appreciate the opportunity to dialogue.

Cancer sweeps into your life like a hurricane, and you’re not the same person you were before treatment, and sometimes it’s tough to adjust to those changes, and even tougher to open up about it with people you love, with people you care about.  And that’s where we need to talk about sexuality and intimacy and how it works through cancer so today you’re going to hear from Sage who has such an eloquent and down to earth way of working through things, you’re getting the best advice on the planet! Here are some things we cover today:

Sage Bolte

Sex and Intimacy (Living Beyond Cancer)

Sex and Intimacy After Breast Cancer Diagnosis (Young Survivor Coalition)

National LGBT Cancer Network

Self-Image and Sexuality (National Cancer Institute)

Sex & Intimacy Discussions on Stupid Cancer Community

Episode 026: Stand Up For Your Rights

Joe:                Sage, it’s such a pleasure to meet you.  Thank you for your time.

Sage:              Absolutely.  Thank you for having me.  I appreciate it.

Joe:                 Cool, Sage.  I think I really want to start with some definitions about talking about sexuality and intimacy.  Are they the same thing?

Sage:               Sexuality and intimacy are not the same thing.  They are two different things, although, they might come together in a sexual and intimate relationship.  Intimacy is really a human need.  It’s about connectivity and desire to be in community or connectedness with someone, to feel safe and trusted in a relationship with someone.  We might be intimate with our best friends.  We might be intimate with our partner, our family, people from our faith communities.  That intimacy, again, is about that connectivity and connection.

Where sexuality is really about how we define ourselves and parts of ourselves as humans.  Yes, it might have to do with sexual activity, but really, it is up here in our brain.  How do we define ourselves?  What does sexuality look like?  That might be, again, sexual activity including intercourse, but it might be touching hands, expressing sexual expression.  They can also be strongly influenced by our spiritual backgrounds, our cultural backgrounds and guide us to what we feel comfortable with or not comfortable with.  It might be in some cultures or faith practices, we keep our bodies very hidden or covered because that’s sacred.  That expressing sexual expression would only be within the sanctity of a marriage/relationship that the body or the sexual acts would only be seen by that person.

Sexuality is freer that they may feel very comfortable expressing their sexuality more outwardly.  Neither, again, right nor wrong, it’s all very individual.  Sexuality, again, is just really again an individual expression.

Joe:                 Yes, Sage, that was beautifully put.  Such a personal and, like you say, a sacred thing.  That it’s not only critical to a relationship if you’re in that, but to also how you see yourself.  I think that cancer can obscure that, so that not only it’s difficult for you to deal with it, but it’s also difficult to acknowledge it as a problem for yourself.  What’s your perspective on that?

Sage:               Yes.  I think sometimes that also, that depending on where you live in America, the way sexuality is expressed is probably different and probably in other countries, as well.  As well as the media, right?  The media, at least in America, over sexualises everything.  Things that are sexualised would be things like looking at the breasts or the butt or who has the most rock-solid body gets over sexualised.  When that’s considered sexy or sexual, my goodness, that not only sets up 90 percent of us for failure, but then you add a cancer diagnosis, chemotherapy, and all the things that change our body image.

If sexuality is defined by image, it has such a profound impact when you get a cancer diagnosis because for some women, their femininity is attached to their breasts or their hair.  Same with men, maybe it’s attached to their hair or to their physique.  When the steroids are added, they gain 30 pounds in two months.  That can have a tremendous toll on how they view themselves.  On top of the fact that no just the body image changes that occur, but the sexual function issues that occur related to the treatments itself.  For young women, they are thrown into medically induced menopause.

Those sexual side-effects can be tremendous and take a huge tole on the way they view their body as well as the way they feel about their body.  The same with men as well.  That they might notice that they’re having a harder time achieving or maintaining an erection or that their libidos change.  They’re not as interested in being sexual.  Maybe that’s because of the treatment itself, maybe it’s because of the side-effects.  Like, fatigue, when you’re really tired, it’s no longer an excuse, “I’m tired or I’m too tired.” It’s an actual thing.  Being tired can influence a person’s, again, sexual connection with themselves, or with a partner or partner.

I think when cancer throws in that kink, it isn’t just again the body image piece, sometimes we don’t always think about all those other side-effects.  Like, dry mouth, fatigue, neuropathy, hair loss, weight gain, weight loss, the changes in body related to scars or port scars.  Feed tubes, colostomy bags.  There are so many things that physically affect the body that then can also psychologically affect the body when we start seeing our bodies as not whole, those negative messages.  That certainly then can influence both sexual functions, as well as our sexuality connected to how I view myself as man or woman.

Joe:                 Yes, absolutely, Sage, that’s so true.  If you’re diagnosed with cancer and you’re worried about how that’s going to affect your sex life, maybe you’re just beginning treatment, who do you talk to about it?  Do you talk to your oncologist, or your nurse?  What sort of questions should you ask?

Sage:               Yes, good question.  It’s a hard question to answer directly, so follow me through my indirect way.  I think where you start is with someone who you trust on the medical team.  That might be a nursing assistant, that might be a social worker.  That might be the nurse or the physician assistant, it might be physician.  I say, start with the person you trust the most and let that person guide you to the next right person, if they’re not the right person.  I would start by just raising, just like we do when they say, “How are you feeling?” If they’re not asking you questions about your sexual health, or if they’re not asking your questions about your relationships, then it probably is on you to bring it up.

When they do their typical check-in of, how are you feeling?  Have you noticed any new side-effects?  That’s your opening with that question, to say, “Actually, I’ve had some concerns, I’ve noticed, for example, my libido has changed.  I heard, I listened to this podcast and this woman said that my sexual function might be impacted.  What can I expect?” You can also ask simple questions of, “I understand that my sexual function might be challenged or changed, what are some things I can do about that?”

What I want to prepare your listeners for is, it’s not uncommon for a healthcare professional to not have the answers.  That’s’ not because they don’t care, but it’s because we haven’t done a good job educating our healthcare professionals to be able to thoroughly address these questions.  They may say, “I don’t know.” It would be less likely for someone to be more dismissive, like, it doesn’t matter.  That used to be language I would hear more often.  Just focus on now, you don’t have to worry if it will come back later.

If you’re provider says that to you, I would suggest you ask for a different provider to talk to.  Not only do you need to feel valid and valued that your relationships and your sexual body is important, but the most proactive you are, the better outcomes you’re going to have.

Just like when we say, go exercise during treatment to keep your body strong, the same thing goes for your sexual health.  The more proactive you can be on keeping your sexual body as sound and strong as possible, the better your outcome is going to be when you complete treatment, or if you have advanced disease, the more you’re going to be able to navigate some of those ongoing and continuous changes.

Joe:                 Yes, that makes so much sense, Sage.  I know you touched on trust and it’s so important, let alone with your medical team, but obviously with your partner.  It’s so crucial talking with each other.  How do you bring it up with your partner?  How do you talk about it?

Sage:               If you’re in a current relationship, different than if you are going to be in a relationship after your diagnosis.  If you’re in a current relationship, it depends on how you two communicate to begin with.  Cancer doesn’t often strengthen relationships, sometimes there can be a little bit of a honeymoon period and people rally.  Often times, how you communicated before cancer is how you’re going to be communicating during cancer.  It does provide you an opportunity to think differently about how you want to communicate.

If you are more of the type that might communicate, for example, via text or email or writing notes to each other or bookmarking a page to say, hey, in your spare time, can you read this?  Then I would say, at this moment, continue using that style.  You could say, for example, in an email, I noticed that my body is changing and I’m feeling a little insecure about it.  I want you to know that I still find you attractive, but my desires have changed.  I would love to have a conversation with you about it.

You can find maybe a little bit more of an easy open to begin the conversation via email.  Then schedule a time to sit down and talk about it.  If you don’t schedule the time, one, it’s not going to happen.  Two, having that sacred time carved out where you know that that conversation is not going to be interrupted is really important.  If you have kids, it needs to be after their bed.  Or go out on a date and have the conversation.  One of the key things I say to people is, use a fact, a belief, a feeling, and then give them an option to change.  For example, I’ll use a young woman with breast cancer example.  Ever since my diagnosis, you stopped touching me.  I believe it’s because you find me unattractive.  It makes me feel sad that cancer has changed this part of our relationship.

Often times, with couples, we might drop those bombs on each other.  You don’t touch me anymore, it’s because you don’t think I’m attractive.  Now, cancer has screwed everything up.  If we can do a better job at saying what we need from our partner, then they have the ability to respond to that information.  The next thing I would say is, then say, I need you when I come in the door to come and embrace me, give me a kiss, or initiate sexual affection or initiate kissing or holding me.  That will help me feel wanted and desired.

You can also say things like, I learned today that my cancer treatments are going to affect my interest in sex.  That doesn’t mean I don’t find your attractive.  I’m still very interested in you.  I don’t want that to change.  I’m going to need you to be more proactive on initiating because my body is not going to initiate it for us anymore.  Creating that open dialogue is important.  I think, again, all of it has to do with how we communicate.  That if there’s loving intention behind it, if there’s the intention of wanting to have a dialogue and be honest, then it gives our partners the ability to respond and have their own feelings.

We certainly can flip it back on them and say, “How has cancer made you feel?” Maybe their world has been turned upside down too and our bodies have been changed.  That changes the way we interact with our bodies.  Again, thinking about how we can use a fact, a belief, a feeling and then an action can help propel better conversations.  If you’re dating and you’re trying to figure out how the heck you talk about this, I would say, first, trust is essential.  There are certain people who wear cancer shirts on their first date and that’s because they’re advocates and that’s all over their cars.

It’s on their websites and their Facebook pages, but the majority of people have cancer more as a backseat, not their front seat.  In those circumstances, I would say, before you disclose and talk about some of the changes, that you just let them get to know you.  Let them get to know who you are because who you are is not your cancer, that’s certainly part of your story, just like your job, or your school, or your family.  Incorporating that as part of your story once you’ve had a few dates, to establish that you actually like this person and are beginning to have trust would be important.

Joe:                 Yes, that’s fantastic.  I love your fact, belief, feeling, action framework because it keeps your grounded and it keeps you in check because your emotions are running wild.  You’re not going off-track.

Sage:               Yes, really, that fact, belief, feeling, action can be used in any kind of communication.  We can use it with our doctors, we can use it with our friends, when we’re feeling like they’re not being the support we need.  We can use it in other types of conversations with our partner or partners.  It’s a good framework.

Joe:                 Yes, what about talking about support?  What if you’re not receiving the support you want from people in your life?  Maybe your friends or family, what’s your advice on that from?

Sage:               Yes, so similar framework, fact, belief, feeling, and action.  I think one of the things we need to remember about both our partners and our family members, and our friends is unless they’ve had their own personal experience with cancer, and even then, their own personal experience is different than your unique experience.  Often times, people’s lack of support is mostly done out of ignorance, not to try to be hurtful or hide.  If you notice that your friends are distancing, it may be that they just don’t know how to talk to you about it.  Or they don’t know how to bring it up.

Or they’re scared they’re going to make you feel uncomfortable.  Initiating that conversation could be as easy as, “Ever since my cancer diagnosis, I noticed that you don’t call as often, I miss hearing from you.  We don’t have to talk about my cancer, I’d just love to hear from you and talk about how your kids are, how your job is.” Initiate them to engage.  You can also say, if you don’t know what to ask me, I can guide you on that.  Or, if talking about cancer makes you uncomfortable, we can talk about other stuff.

Most of the time, they’ll say, “I just didn’t know what to say and I don’t want to make you feel bad.  I don’t want to complain about my stuff because you have so much more going on.” Again, normalising, I guess I have cancer going on but I’m still human and I’ve a life and other things and I’m understanding that you have a life, too.  Giving, again, that ability to share is important by giving them permission.  Often times, with our partners or our friends, it just starts with giving them permission to not know what to say and that’s okay.  If you hear them saying things that are unhelpful, which unfortunately happens a lot, like, everything happens for a reason or god has a plan or you’re so strong, if anyone can do it, you can.

It’s okay also to say, I know that’s coming from a place of love, but that’s not helpful to me.  What I need from you, is just for you to listen.  If, for example, they’re spiritual life is important, certainly pray for you, but let’s not bring god into the conversation with cancer.  You can set some boundaries.  Or, if that’s helpful to you, ask for more.  That’s everybody.  You need to know what helps you and what doesn’t.

Joe:                 Yes, that’s fantastic, Sage.  I know you mentioned that if perhaps after treatment you’re looking to meet someone new, how do you talk about it when you just start dating, perhaps?

Sage:               I think when you’re starting to date and especially here at least for, again, I think it depends on the generation in which you’re diagnosed.  There are 65-year-olds who are dating, and they may or may not be using the apps.  I think if you’re 65 and dating, there is an expectation that you’ve lived a life that probably has had some traumas in it, like a cancer diagnosis.  Dating and disclosing that in your 60s is going to be very different than dating and disclosing that in your 20s and 30s.

Again, I think when you look at how do you being to date again, or come out after your cancer diagnosis, certainly, you can try to meet people.  Like if you really want to meet another survivor, go to some support groups of people your own ages, right, connect on different social media sites.  You can connect to people on Stupid Cancer, or other young adult focused cancer websites.  Really, I would say, if you’re just looking to data again, I would not say bring cancer into your dating profile because you are not your cancer.  It’s really important.

Unless you’re actively in treatment and it’s hard to hide the appearance, issues related to the cancer diagnosis, then probably you’re going to need to put somewhere in your profile or in your description, currently kicking cancer’s ass or something.  That it’s got to have something that shows your strength.  Again, I think that’s what you need to be really comfortable with.  I always tell people, get really comfortable with your story first, go and practice disclosing to your best friend or to your sister or brother who can say, “That was horrible, do it over again.” You can feel confident because the more confident you are in your disclosure, the more confident you are in your story about your diagnosis, because most likely when you’re on that date, nowadays, enough people have had cancer to know that there are going to be some long-term effects of that, right?  We’re starting to see survivorship so many more years later.  They might say, “Wow, that’s amazing, how does that impact your life now?”

That might be the time where you say, “I don’t really know, I’m still figuring that out.  I really haven’t figured out my body yet but I’m working on it.” Or fertility might be an issue, but we’re not sure yet.  That would be your opportunity to disclose some of the things that you might need to disclose at some point.  Being confident, like, yes, I had cancer, I was treated three years ago, I have clean scans, I see my doctor every six months, or every year, I feel great.

I’m back running.  Whatever that might be, or you flip it to the things you are now is going to be important.  Again, if you’re in treatment, flip it to the things that you’re doing really well and make sure that that person feels relaxed.  If you’re insecure about it, they’re going to either think you’re hiding something or that you’re not confident that you’re doing well.

Joe:                 Yes, I love this advice, Sage.  You’re keeping it honest, but at the same time, it’s not front and centre.

Sage:               Yes.  Again, you need to adapt your own personality.  I joke about the people wearing cancer sucks shirts on dates, but I do have some of my young adults who do.  That’s an okay thing.  They slap those bumper stickers on people’s cars as they go on their date.  Use your own unique style.  It would be important to think about.  The other piece of this is social media has really changed anonymity.  If you disclose on Facebook or on Twitter or on any other social media site that you have a cancer diagnosis, even if it’s just a picture of you bald, you need to be prepared to speak to that.

Nowadays, people will Facebook stalk you four days before you see them on a date.  Be mindful that what you put out there is going to come back.  If you don’t want cancer to be part of your profile, right, not even your written profile, but your internet world profile, you should be really thoughtful about what it is you’re putting out there in the social media world.  They will find it.

Joe:                 Yes, exactly, that is so true, Sage.  Talking about survivorship, there is this expectation that you’re just going to bounce back to life.  That’s not always the case, is it?

Sage:               No, not at all.  I haven’t yet met somebody that bounces back to life after their treatment.  I think the challenge with treatments is we do now a really good job at treating the cancer and making sure that we give you the highest survival rate possible.  That means we’re treating you with some pretty heavy-duty stuff that have ongoing side-effects.  As you get to the finish, if you’re taking chemotherapy, the finish of chemotherapy, you may be rejoicing that you’re done, but that chemical stuff still has to get all the way out of your body.  Then there are all of those other secondary effects of late effects.

For some people, it has cardiovascular issues, that they they’re followed by that might impact, again, their ability to get back to running like they used to.  Most importantly, though, many people are okay with putting the sexual components like the actual act of sex on hold during treatment.  There is this anticipation of, okay, once treatment is done, we’re going to get back to normal and we’re going to start having sex again, or I’m going to have sex with myself or whatever my normal patterns were before.  They suddenly become very keenly aware that their body is not where their brain is.

That their brain may want to be ready and roaring, but their body is fatigued and doesn’t feel good and may have some dryness or some other sexual complications that take time to heal.  Sometimes it’s time and sometimes it’s using techniques to help heal it, that you’re going to have to do for life.  I think the emotional component of that, that comes up for a lot of survivors, the awareness of pull up your boot straps and get through the treatment.  Then the reality that, oh my gosh, what just happened?  It hits you, and as you’re done pulling up your bootstraps, and you’re ready to go back into life, your body isn’t ready yet.  That grief of how cancer didn’t just take those nine months of your life, now it’s taking another year for that healing.

Often times, I’ll tell people, when you hear that you’re going to be done with treatment, celebrate that but be gracious with yourself for the next year.  It really takes about a year from when the time treatment ends until a year at that point, where you start to feel like, I’m some semblance of myself again.  That semblance of yourself may look different because the other part of survivorship is maybe your priorities or values have shifted a little bit, even if you were single, maybe the person you’re attracted to after your cancer diagnosis is different than the kind of person you were attracted to prior, just based on your experiences and exposure.  That’s okay too.  I think being gracious with yourself and giving space for both the grief and also for the redefining of today I might have a lot of energy, so I’m going to do what I can.  Tomorrow, I may be totally gawked out and that’s okay.

Joe:                 Yes, that’s such fantastic advice, Sage, because I think sometimes we have such high expectations of ourselves.  I’ve spoken to a lot of folks, yes, they talk about if you finish treatment, you expect to bounce back to life and do the things you’ve always done.  That really isn’t how it works out and you have to redefine how you see yourself, how you see your everyday reality and how you see your future.

Sage:               Yes, and if you’re in a partnership, it often times is the mistake of the partner not ill-intended, just ill-informed.  That when treatment is done, within a month, you’re going to be back to normal and able to take care of the kids and back to doing laundry and back to running around, and all of those things.  That’s just not possible.  Including your partner in some of those conversations with the doctor about what to expect in healing would probably be important, too, because that’s an opportunity for them to ask questions.  Like, well, how long until?  When will she be back or when will he be back?  It also gives you a platform to say: How long until I’ll have energy again, so that you can ask the questions that maybe he or she needs to hear to better be equipped for expectations that are realistic.

Joe:                 Yes, absolutely.  Sage, you have so many fantastic support groups at your centre, so what are some of those things that you see are working, that are helping people connect, help people during treatment and beyond?

Sage:               Yes, I think some of the things that we focus on, we have disease specific support groups.  You can go to a support group that crosses all ages and unites you from a diagnosis.  All colon cancer survivors can come together.  Sometimes that’s stage one to stage four, but the unity and connectivity that happens because their shared experiences and the impact of the diagnosis is so similar, that there’s great strength in that community.

Certainly, support groups are not for everyone.  We know they can improve the quality of life for people, for people who tend to be more people-people and want to connect to people.  For people who rejuvenate more internally, that may not be a place for you.  Maybe you want to think about taking a mindfulness class or taking an exercise class for survivors that doesn’t necessarily require you to share feelings but still creates that sense of connectivity and community.  At our centre, we really look at mind/body/spirit options, both from a support group around disease but then also, mindfulness based stress reduction techniques, education series on managing some of the side-effects of treatment, so that, again, you might go to a session on chemo-brain and being around other people hearing their stories, gosh, you walk away thinking, “I’m not as bad as I thought I was, or I’m not going crazy, that’s actually a real thing.”

That’s the importance of connecting to other people, it’s the validity that one feels when you hear that you’re not alone in that, that you’re not the only one that can’t remember where you put your keys, or you’re not the only one that is struggling with figuring out how to feel good in your body again.  There is a great sense of relief experienced when that can be done.  Again, whether that’s a support group or just joining another thing.  The other benefits we’ve seen, things like our fitness classes, is not just about the physical improvement and awareness of their own bodies, but also, again, that encouragement, that buddy-system that happens around, hey, I didn’t see you at yoga on Monday, what happened?  That shared experience of encouraging one another to take good care of their bodies while they’re in treatment, as well as when they’re after treatment, as well as that accountability around, are you okay?

Is there anything you need?  That can create some of that connection between people.  Certainly, there are people who live in remote areas that can’t get to a face-to-face group or can’t get to a class.  I would encourage the listeners that are in more remote areas to find online connections.  The only thing I say about online connections, if you’re going to find a support group, I would really advocate, and I am bias just because I’m a clinician, that you find a group that is facilitated by a clinician.

Moderated by a professional that has a license because often times, what can happen, especially on the web, the lines of the interweb lead to all kinds of openness and some people will get on there just to complain or share really scary stories.  If there isn’t somebody who knows how to redirect that conversation and make sure that everybody feels included in the conversation, it can be rather unhelpful over helpful.  Then finding things, even for me, I’m a big fitness guru, so I think even just as sexual bodies, movement is critical for our bodies.  Using online apps that keep you moving.

It doesn’t have to be going to the gym.  It can be literally tracking your steps and having a realistic goal for yourself that day, that if you’re feeling more depressed or if you’re feeling more fatigued, set a goal of a thousand steps, can you get that done?  Have somebody maybe in your family or somebody in your treatment that can be that accountability buddy, that can send you a text and just encourage you to get up and walk.  That also has a huge impact on the way you think about yourself and the way you feel about yourself.

Joe:                 Yes, that’s fantastic, Sage.  What are some of the best resources online in your opinion that talk about sexuality and intimacy around cancer?

Sage:               I wish there were more.  There aren’t a lot of online resources.  I would encourage you to Google, there’s probably a lot you can find connected to specific disease.  Living Beyond Breast Cancer, and Young Survivor Coalition, those are two breast cancer organisations that have great information on their websites.  The National Cancer Institute in the states has as great section on sexuality and cancer, both for professionals, like myself, to read up, like, what do I need to know about side-effects, but also for patients and families.  That’s an easy place to start, as well.  There is a website: cancer-network.org.  That’s for the LGBT community.  I think that’s a great online resource.

Stupid Cancer has some information on their website.  Now, ASCO, the American Society for Clinical Oncology, partnered with the Canadian ASCO, and together we created some guidelines on addressing and assessing sexual health in cancer.  Although, that is written for professionals, we wrote it to put in pocket books of physicians and nurses, what is valuable about that is, if you’re a patient, you can go on and you’ll at least get some of the information that is normalising, like, I had no idea that my libido was going to be affected or I didn’t know I was going to have vaginal dryness.  That it will give you some of the information that you might need.

Then a nurse named Anne Katz, she’s done some great books, both for men and women, one called: Woman Cancer Sex.  The other one: Man Cancer Sex.  Are also some great books.  I also think, again, depending on your own experiences coming into cancer, and I should have said this earlier, if you have any kind of sexual trauma in your past, I think it’s really important to honor that.  If you can, tell someone because unintentionally as healthcare providers, we don’t know that history unless you share it.  We may touch you in ways that we view as clinical but may actually be emotionally harming you.

If there is any kind of sexual trauma in your life, that could be from unwanted touch to molestation, to a rape, it’s really important for us as providers to know that, so we can do a better job taking care of you through your experience.  Then the other piece I would say is, depending on your faith background, your spiritual practices, that your spiritual leaders might be good resources for you on navigating, how do I manage this?  What about my changing body can I do without the context of my faith practice.

For example, as a certified sex therapist, I prescribe masturbation, not for the goal or orgasm, for rehabilitation.  If masturbation is not within the religious of culture confines of your practice, I personally, as a sex therapist, would work with your faith leader to talk about what would work in order to preserve this, so that when they are in a sexual relationship, they can go into that fully healthy and knowing their body.  Again, I think some of that may be on online but a lot of that is just talking and sharing.

The other piece I would say for any of the women listening, tell the floor therapist, and men too, if you have incontinence issues related to your treatment for prostate cancer or bladder cancer or colon cancer.  Floor therapists are physical therapists that specialise in just the pelvic floor area.  They do amazing work and are tremendous resource to just strengthen that pelvic floor muscle that’s often attributed to sexual pain, or discomfort, as well as incontinence.

Joe:                 Well, thank you so much, Sage.  Thanks so much for all your time and your advice.  Thank you for what you do, this is crucial.

Sage:               Absolutely.  Thanks for having me.  I look forward to being back again if other questions come up.

Joe:                 Absolutely, thanks so much.

Sage:               Alright, you’re welcome, take care.

When it comes to friends and family supporting you during cancer, it’s a tricky balance to maintain: on one hand, you don’t want to Impose or come off like you can’t handle it, but then again you want to let them in and help because they want to be there for you, but they don’t know how.  Today I’m talking to Rachael who went through cancer herself and created a solution a mobile app that can break those barriers and make it easy for people in your life to help out and for you to get the support you want, on your terms. Here are some things we cover today:

CanDo app

Garvan Institute of Medical Research

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

Joe:                 Hey, Rachael, I love your app.  I must admit, I was thinking about this before, a way of getting people to support you on your terms.  I think this is so fantastic.

Rachael:          Yes, thank you.  It’s been a labour of love to get to this point.  There are lots of plans for the future, as well, so it’s been a big deal, a lot of work.

Joe:                 Yes, I can only imagine.  Yes, I was talking to Ben Smith from the University of New South Wales, that’s when he told me about it.  I was like, wow, that’s exactly what we need.

Rachael:          Yes, well, I’ve been lucky enough to get a lot of support from most of the big main cancer organisations.  They all recognised the need for it.  I think a lot of them just either don’t have the money to do it or it’s not their culture to get those things done.  Yes, there are lots of plans for the future to make it bigger and better and all that kind of stuff, but it’s been great for me, as well.

Joe:                 Fantastic.  Rachael, I want to take a moment to go back in time in a time-machine to a time before cancer.  What was life like before?  What was life like then?

Rachael:          I had a pretty senior job in an advertising agency.  I have a 25-year background in advertising.  I had just taken on a pretty big job.  Had a brand-new mortgage on my first apartment, single, living in Sydney and having a lot of fun.  It was a Saturday morning when I accidentally found quite a large lump in my right breast.  You instantly feel the other side because you want to feel if it’s symmetrical, because you think if it’s symmetrical, maybe it’s something that’s supposed to be there.

It was on the underside then I thought it might be something attached to my ribs.  It wasn’t symmetrical, so I was pretty quick to go to my GP.  Maybe two or three days later.  She had a look at it and the first thing she said, I remember every word, she said, “I don’t like it.” Then went into a week of scans and ultrasounds and biopsies and things like that from that point on.  Just trucking along in life and everything is normal and doing normal things, then all of a sudden, literally, your world turns upside down in an instant.

Joe:                 Yes, it’s crazy, isn’t it?  I remember when I found out, those words are kind of etched into your mind.  What was it like for you?  What were your first thoughts when you got your diagnosis?

Rachael:          Well, the diagnosis was kind of a staggered process.  When I went to have my mammogram and ultrasound, and it was the week before Christmas, so I remember the doctor, she was great.  She called around to try and find somewhere that could actually take me the week before Christmas, because they’re usually really busy in that time because they’re about to close down for the couple of weeks.  The radiologist had stopped talking to me, or the radiographer had stopped talking to me.

My sister had cancer, so my sister had a rare form of sarcoma called: Synovial Sarcoma.  I’ve had that experience with her going on for years.  She had said to me, when they stop talking to you when you’re having your scans, she said that’s when you know it’s bad news.  I was chatting along with this radiographer and then she stopped chatting and I just went, oh no.

I’d already twigged that something was going on because they’d done the mammogram twice.  Of course, that’s code for, there’s something we want to have a better look at.  At that point, she called the doctor into the room, he came in and he said, “I want you to sit up.” She sat me up and said, “Look, I think we’re looking at a breast cancer, but we need to do a biopsy to be sure.” My doctor had already had the foresight to book me in for a biopsy for the following day.  That was already going to happen.

Once the biopsy came back, it was a couple of weeks, I had to wait over Christmas until I think it was the day they reopened after Christmas that they confirmed that the cells they had biopsied were a Carcinoma.  My GP was the person who told me that.  She cried, actually.  She called me in and she opened the envelop and she started to cry.  I think that’s because she knew my history, she knew my family history, she knew that my sister was very sick.  I think she was just thinking, what more can people take?

Then, of course, I had surgery and it wasn’t until surgery that they were able to give me the exact diagnosis of what kind of tumour it was and what the implications were as far as lymph nodes were concerned and the stage and grade and all of that kinds of things.  Which, unless you’ve been through cancer, those things are all gobble-dee-gook, really, you don’t really understand what those things mean.

Yes, from start to finish, I knew I had some kind of cancer, probably pretty quickly, and then it was another month before they understood what it was and how to treat it and what happens next kind of thing.

Joe:                 Yes, absolutely.  You just made me realise that when I was doing my test, when I was doing my ultrasound initially, that the girl who was doing it, she stopped talking, as well.  Yes, I remember it now.  I thought it was a bit rude.

Rachael:          Yes, it’s a common thing.  My sister had mentioned it to me in relation to her cancer.  Then just recently, I had my mammogram and ultrasound and they had to redo the mammogram and then they stopped talking to me during the ultrasound.  What happened was, they’d found some – I’ve had reconstructive surgery fairly recently – so it was new scars that they were looking at.  That’s what they were trying to figure out.  They were trying to work around the new scaring.  It’s a really disconcerting moment when you’ve had that happen to you in the past.

Joe:                 Absolutely.  Rachael, on the practical side of things, there is a lot going on when you find out you have cancer, you’ve got your treatment to go through, you’ve got your everyday things, your job, all of that to worry about, how did that work out for you?

Rachael:          Not easily.  I was very lucky in that I had a boss at the time who was incredibly understanding, and he wanted to make things work.  Which is really important.  Obviously, there are some people who instantly think, well, how is this going to affect my business?  That’s natural.  I actually don’t judge those people too harshly because they have a business to run.  They’ve got to try and understand the implications on that.  I get that part of it.  I was really lucky that my boss at the time who valued my contribution and wanted to keep me involved as much as I possibly could.  Ultimately, what happened was, I was so sick with treatment and I suffered really bad side-effects, that I couldn’t really work at all for quite a long time.  I tried to keep my hand in a little bit, but for me, it wasn’t really possible.

Whereas, I know other people who work part-time during treatment or sometimes they work full-time during treatment.  For me, that wasn’t possible.  They kept my job open for quite a while.  They were filling in with consultants and freelancers.  I wasn’t getting paid, so I didn’t have paid leave for most of that.  I did have access to income insurance.  Which is a whole other story because that sounds fantastic but that came with its own set of problems, because claiming against those insurance policies is really complicated.

A lot of the stuff that’s going on at the moment in front of the banking world commission actually relates back to income insurance claims and how they’ve got it so wrong in the past.  I did have access to some money through those channels, but it’s a massive lifestyle change, and I want single, it was only my income paying for the mortgage.  Some people are surprised when I told them that you still have to pay your mortgage when you’re sick.

They have this idea that the bank says, “You’ve got cancer, don’t worry about it for a year or something.” That doesn’t happen.  You still have to pay the bills.  It’s hard work, you know?  Also, I think psychologically going from being – I was busy in meetings, meeting C-level people and big companies to talk about their business plans and things like that.  Going from that to being at home sick most of the time.  It’s a huge psychological shift that is quite a challenge to overcome.

Joe:                 Yes, absolutely, Rachael.  What about your family and your friends?  Did they support you in the way that you wanted to be supported?

Rachael:          Well, I think they tried.  I think that is really how can-do came about, really, is the learning from that particular of the experience.  A lot of people tried to help me, a lot of people offered help, and I did the typical polite thing of saying, “No, I’m fine.  I don’t need any help.  I’m fine.” Also, having been used to be a very capable independent person, you don’t want to give that up.  You don’t want to be perceived all of a sudden as being this helpless person.  It’s the natural thing to say, “No, I’m fine.

I don’t need any help.” Then, of course, the other people would walk away saying, “Well, I know she can’t do everything by herself, but now I don’t know how to re-ask the question or what does she really need.  Like, if I do this thing, is that the right thing to do or is it the wrong thing to do?  I don’t know if that’s actually helpful or not helpful?” It’s nine years later and I still have people coming to me and saying, “I wish you had let me do more.  I wish you would have given me something to do.” Thinking about all of that really was the catalyst of can-do.  Also, at the time, I had a pretty unique situation, in that my sister was going through treatment at the same time.

My family had actually, my mum and dad, had moved back to Sydney with the idea that they were going to help her get through her latest rounds of treatment.  She had a couple of young kids.  She had a very different lifestyle to mine.  She was living in the burbs, a couple of kids.  Had a lot of support from her kids’ school and people like that.  In my case, I didn’t have those networks that tend to happen once you have kids.  My relationships weren’t based on taking the kids to swimming.

My relationships were based on: when are we going to have a cocktail?  It’s a very different kind of environment.  It’s a big leap also to go from that to can you change my sheets, or can you help me with my insurance paperwork, or can you organise a gardener to come over?  These are really awkward conversations to have.  Off the back of all of that, not really having the access to the kind of help I needed and not being able to ask for the help I needed.  I really thought, well, there has to be a better way.

I was hearing a lot from people who had the same sorts of problems.  I thought, what is the solution and what is the way to solve this problem, so that people can start getting better care when they need it and the help that they get is actually more relevant to what they need?  That was really the catalyst to thinking about can-do at that time.

Joe:                 Yes, Rachael, that makes so much sense.  I love the name because it’s the can-do attitude.  To me, it really is about dealing with problems and not about giving up.

Rachael:          Yes, well, the can-do is the brand, the brand that I’ve developed during can-do, and remembering I have a 25-year experience in advertising.  I think of that as a brand.  The personality is always positive, so the glass half full about solutions.  Rather than dwelling on problems.  It’s about finding pathways to better outcomes.  We want people using can-do at the end of it all.  As you know, Joe, you come out of cancer treatment and you’re not the person you were.  For some people, it might be a physical disability that they have for the rest of their lives.  For a lot of people, the psychological stuff going on that stays with them for a really long time.  Diet, fitness, all sorts of things tend to go by the wayside when you’re sick.  We want people using can-do to come out of their experience in better shape than they might otherwise if they weren’t using a tool like can-do.

Joe:                 Yes, fantastic.  With can-do, tell us how you would go about getting this app and getting new people involved to help you out?

Rachael:          CanDo is available in both the App Store and Google Play.  It’s free to download and free to use.  That’s thanks to the sponsorship of the Garvan Institute of Medical Research.  This year, we’re sponsored by them.  They’ve been able to make it so that the app is free for users.  We are looking for other partners and sponsors.  I’ll just throw out that little sales pitch there for anybody who’s listening.  You download the app.  Once you’ve downloaded the app, you then invite your friends and family to join you.  In our language, we typically talk about the person going through treatment as the person driving the app.

It can also equally be driven by a carer, so a spouse or an adult child or a really good friend.  A really important piece that I talk about is the person I call the bossy friend.  We’ve all got that one friend who gets stuff done and organises things.  It might be that person.  They invite people to join through Facebook or email address.  Once you’ve got your team assembled, you can start allocating the tasks.  We suggest a list of tasks or you can customise whatever tasks you need help with.  Like I said, it can be as simple as domestic stuff, or it can be as complicated as legal stuff or financial stuff.

Then a lot of people also, you might not be physically able to help, but maybe over lunchtime you can make some phone calls for that person, make some inquiries about a handyman or a gardener or something like that.  There are all sorts of things you can do to help somebody which just takes that pressure off having to maintain their day-to-day stuff, which we all have to do.  Then there’s also an update section in the app.  I put that in there especially because when I was sick, and I’d come home from chemo, I’d get 20 phone calls from friends.  How’s chemo?  What are the doctors saying?

How’s chemo?  What are the doctors saying?  By the fifth or sixth phone call, you’re just exhausted and you think, “There’s going to be another ten phone calls.” This way, with the update section, it allows you to reach out to this inner-circle of friends and give them information that you wouldn’t necessarily for example put on Facebook or something like that.  Facebook, I tend to think of a very curated life.  Everybody is having an amazing time on Facebook.  It may be that you’re not having an amazing time, so our update section gives you a safe place to share that information with your inner circle.

Then there’s a content area.  In that content area, we give people ideas of how to approach sticky situations.  What do I say when my friend tells me that they have cancer?  How do I approach this?  What’s the latest news in cancer research that’s relevant to somebody going through cancer?  There’s something in the app that hopefully services a whole bunch of different needs for people as they go through their treatment journey.

Joe:                 Yes, Rachael, I love this solution because it caters to both sides of the cancer story.  The patient, the person going through it, because all of a sudden, you don’t have to be awkward, trying to find the right terms to tell people about what you need.  At the same time, for the friends and family, they don’t have to try to guess what you want because they also don’t want to do the wrong thing or say the wrong thing.  I wish that something like that was around when I was going through treatment.

Rachael:          Yes.  I had some crazy things said to me when I got sick.  People would say, “Everybody gets breast cancer now, it’s like having the flu.” Somebody said that to me.  Of course, the one that you hear a lot is, “Yes, my aunty had that cancer.  She died.” You think, okay, well that’s not really helpful information right now.

Joe:                 Thanks for telling me that, yes.

Rachael:          That felt really great.  In terms of understanding what people want, the example I like to give is, when I was sick, people would say, “What can I bring you?” I would, of course, say, no, I don’t need anything.  Then they’d inevitably show up with a cake or a pastry or something like that.  I couldn’t eat those things.  Those things just made me really sick.  They would just go in the bin.  What I really wanted was oranges and citrus.  Of course, I never asked anybody to actually bring me a bag of oranges.  If I said that to you and you’re a friend of mine, of course, you’d be happy to do that, but it’s not something you’re naturally going to think of without me giving you some kind of indication that that’s what I want.

CanDo allows you to put those things out there, so that people really know how they can help you in a really meaningful way.  What you said is exactly right, it’s about the person going through treatment, but it’s also about solidifying the importance of the relationships around you.  It’s really important that you maintain those as you go through treatment because social isolation is a really big problem for people with serious illness.

Joe:                 Yes, so true, Rachael.  You know, like you mentioned, you really never come out the other end of cancer treatment the same as you were before.  I know it gave me a completely different outlook on life.  What’s it like for you?  Did your long-term goals and how you see yourself and things you do every day, has that changed?  What are you like now?

Rachael:          Well, things have changed.  I was never somebody who suffered fools.  I’ve always been very opinionated and very strong-willed.  I think now I am far less likely to say yes to things that I don’t want to do, for example.  Maybe in the past, I was a bit more, “I don’t really want to do this thing, but I’ll do it anyway because that’s what’s expected of me or whatever.” Whether it’s a function of age or it’s because of the cancer and because of what happened with my sister, I feel very strongly that life’s too short to spend time being miserable or being around miserable people or doing things that you really just don’t want to do or don’t believe in.  I’m much clearer about what I’ll participate in and what I won’t.

I don’t apologise for those things either.  I don’t know, if it’s a woman thing, as well, but I can’t do that because sorry, sorry, sorry.  These are all my excuses.  Now, I just say no, sorry, I can’t do that.  Things like that.  You just think, life’s too short for me to try and makeup an excuse, so I’m just not going to bother.  I’m really focused on that.  I’m really focused on making CanDo successful.

There are lots of plans for the future to make it bigger and better and also service a lot more people beyond cancer, because when I talk about this in any kind of public form, I instantly get the feedback saying, “Have you thought about doing it for X or Y?” Of course, I have, but it’s just now a matter of time and money and energy to get the other opportunities addressed.  That’s my focus.  I’m laser-focused now in a way that I probably wasn’t before cancer.

Joe:                 Do you think that helps you, as well?  Being focused on this new thing that you’ve got going on with CanDo, which is fantastic, so really good on you for doing that, because it’s really powerful and that’s something that’s going to help lots of people.  Does that give you a new positive focus to shape your new life around?

Rachael:          Yes, it does.  I’ve actually quit my job, my paid job.  25 years in advertising and I’m now in a very different world, which I really enjoy.  I get to talk to people who are literally curing cancer.  Researchers and scientists and specialists, oncologists, and the big cancer organisations, who are trying to solve how people live with cancer in the future.  One of the big challenges with cancer is also that as treatments become more effective, more and more people survive really long periods of time, often with cancer, as well.

The numbers that are projects of people living with cancer, as a chronic illness, rather than a terminal illness, is massive.  I meet people who are actually trying to solve those kinds of problems.  That’s going to have ta fundamental effect on our society, our economy, our health policy, all sorts of issues like that.  For me, I get a real kick out of being in situations where I learn and I’m learning every day.  I get really enthusiastic about the future.

Joe:                 Yes, that’s fantastic, Rachael.  Good luck with your CanDo app.

Rachael:          Thank you, thank you, Joe.

When you’re done with treatment, when you’re hopefully done with cancer, you don’t want to put yourself under too much pressure.  You want to have realistic expectations and look after yourself emotionally, physically and socially and connect with the people you care about. That’s really what we’re talking about today with Alene:

Navigating the C: A Nurse Charts the Course for Cancer Survivorship Care

Cancer Harbors

Episode 025: How To Stop Cancer From Running Your Life

Joe:                 Alene, listen, you’ve been an oncology nurse, you’ve seen a lot of folks go through treatment.  In your experience, what are the biggest myths and misconceptions that people have around cancer?

Alene:              Well, one of the biggest misconceptions on the part of patients, people who go through treatment is that they think that as soon as treatment is done, that they’re going to feel better.  They don’t really have any idea of what the recovery process is going to be like.  What happens is, they’ll get done with treatment and after a few weeks, they think, “Well, when am I going to start to feel better?” Then this drags on for months.  They do start to recover in some ways, but in other ways, there’s still a lot of fatigue, there are a lot of things that need to heal.

The thing is that people don’t understand that when treatment is over, and the cancer is gone, it doesn’t mean that you’re done.  I think people focus so hard on getting right of the cancer because that’s what you think.  It’s like, get this out of me, I want to be cancer-free.  In the process of doing that, it uses a lot of your body’s resources going through treatment and healing from whatever they do in the treatment.  Also, a lot of people, especially people who have not had cancer will equate cancer with death. 

There’s that burden, that mental burden of fear.  Which is a legitimate fear, but it’s not necessarily – more people survive much longer now and it’s not the same as it used to be.  I think in general there are misconceptions on the part of people going through cancer and cancer treatment and then the people around them.  They have their own set of misconceptions, too.

Joe:                 Cool.  If we look at people around them, what sort of false beliefs, yes, or maybe misconceptions people have around cancer that maybe their caregivers or maybe their friends or family or co-workers?  I know that in a way from experience, you feel like you’re almost branded with something.  That you’re treated in a different way.

Alene:              Yes.  I think to back up for a second, I think that there’s this cancer literacy.  This idea that knowing enough about cancer to have a working knowledge of it when you have to encounter it.  Whether it’s in yourself or it’s someone you know, there’s so much misinformation out there.  I think a lot of people think that once the person is done with treatment that they’re going to just bounce right back and go back to doing what they did before.  They don’t realise that the person might have a completely different outlook on life.

It changes people in so many ways.  I think that people who don’t have cancer but they’re watching someone else go through it, they have no idea of the transformation that’s going on inside the person.  Mentally, physically, emotionally.  All these other things that have changed.  I think that for the people who don’t have cancer, what they really need to do is ask the person who does or did have cancer and not assume anything.  Their assumptions are most likely going to be wrong.

Joe:                 I think this transformation, this metamorphosis that people go through when they get cancer, it probably really starts at the point of the diagnosis.  It’s such an incredible shock, you feel helpless, you feel lost.  How does someone regain some resemblance of control over their life?

Alene:              I think there’s a real tendency for people when they hear, “You have cancer”, when they hear that diagnosis, that they withdraw because they’re so overwhelmed.  They don’t even know how to handle it.  What they really need is to not hide and to reach out and especially to other people who have been through it.  Unfortunately, that’s not something that people are told to do at first.  It’s just all overwhelming with all the workups, the medical workup and the beginning treatment and everything that needs to be done in preparation for that.  One of the most important things that a person can do is seek out other people who have been through it, or even are going through it at that moment.

There needs to be a way for medical professionals, people on the treatment team to help the patient reach out to those people, so that they don’t feel alone.  If you’re going through that, if you have a doctor or a nurse tell you details about it, they’re seeing it from their perspective, but unless they’ve been through it themselves, they can’t possibly really tell you what you’re going to experience.  You need to hear it from someone who’s been through it.

Joe:                 Yes, exactly.  It’s like I’ve had the girls at reception recommend me a particular doctor because he’s great, and then I talk to him and he’s completely clueless, but I understand that he’s great from their perspective because he’s a doctor or whatever.  From a patient’s perspective, it’s really different.  I couldn’t agree with you more about, of course, finding people who are in the same situation.  I think this goes not just for cancer, Alene, but I think this goes for everything single situation we’ve got.  If you’ve served in the army, if you’ve been to the war, when you get back, you want people who have been through the same thing.

If you’ve been through a breakup, then you’ve got to talk to your friends or your mates or just people who have been through that.  I think it’s just so important to connect with the people who went down that road before, who’s experienced what you’ve experienced, maybe through the exact same thing or maybe they’re just one step before.  Even alcoholics anonymous, it’s all about going through the same things that’s someone has gone before and connecting with their experience and being able to go, hey, do you know what?  I’m not alone in this.

Alene:              I couldn’t agree more.  The connection.  When you used the word, “Connection”, that is so important, and you have to find people who can relate to that experience because doctors and medical professionals, they’re great at treating the cancer, they’re great at helping you get that disease out of your body, but they don’t go through what a patient goes through.  Just like you’re saying anybody, it doesn’t matter if it’s cancer or any experience in life, when you have something traumatic happen to you, you need other people who understand and who have been there.

                        Reaching out to others is the most important thing.  I think we could save ourselves so much trauma and so much difficulty if when a person is initially diagnosed with cancer, if part of what they are told by their doctors is, look, we’re going to plan out your treatment, but what you need to do right now is connect with this group or these people, you need to talk to people who have been through it.  Maybe they have other patients who’ve been through it who are willing to talk to future patients.  There has to be a consideration of the experience of the patient in their everyday life.

Joe:                 What do you think?  What can someone do right now?  Let’s say someone is diagnosed and they’ve seen their oncologist or another specialist for the first time and they do want to connect with others, what is the best way of finding those people?

Alene:              There are support groups everywhere.  If you live in a big city, most likely, you’re going to find some through wherever you’re being treated.  If you go to a hospital or you go to a healthcare facility, they will have information.  Usually, they have information about support groups.  You can also look online, you can look on social media, there are all kinds of different things.  You can even just Google on cancer support groups in your locality.  You might find one.

There might be many different support groups, but you have to find a good one.  You have to find one that resonates with you and that is going to be helpful for you.  There are some groups that are less helpful than others, some will sit around, and it becomes complaining, feeling sorry for yourself.  Which is okay, there’s a place for that, too, in this whole process, but there needs to be some kind of practical help for the person who’s going through it, so that they can take some position steps and get through it with less difficulty.

Joe:                 Do you know what, Alene?  I’m a big fan of online support groups because really, it’s like they are communities and it’s just people who are really willing to spend their time and share their experience and help others and give advice.  What I really love about it, it’s also completely anonymous.  You don’t have to filter anything out.  You just say whatever comes to your mind and it’s okay and people get it.  You know?

Alene:              Yes, online support groups are great.  Plus, you have so many more people to reach out to.  If you’re only dealing with a local area, you’re not going to have as much diversity of experience and the depth and all the different people who are out there who’ve experienced something.  You get a lot more opportunities to connect with someone who’s been through what you have been, when you’ve got a support group that reaches out all over the world.

Joe:                 Yes, for sure.  I remember we talked about the initial diagnosis and I remember that it stays with you, you get over it, and you move on, but still, you get the shock, the sense of being scared, like a rabbit in the headlights and you’re in this system, the medical system, and you don’t really understand what’s happening.  You don’t understand what all of these people do, how am I supposed to behave?  You’ve been in that world, so as an oncology nurse, what sort of things do you think that people – should they be comfortable asking questions and talking to you and talking to their specialist?  What sort of advice do you have on that front?

Alene:              I would say don’t expect to find everything you need from your medical treatment team.  like I said before, they are great at treating the disease until the disease is gone?  Once the disease is gone, once the cancer is gone from your body, hopefully, or in remission, you’re still a patient, you’re still part of that medical process.  You need help restoring your life as a person again.  It’s really important to reach out to the community out there that can help you.  There are so many resources out there.

There are just so many people and practitioners and experts outside of the clinical setting who can help you.  Like we said, support groups, activity groups, people who teach, people who coach, educators, special interest groups and clubs, even political action groups.  There are all kinds of ways to get involved and reach out to others when you have the energy to do that, or as you’re regaining your energy.  Again, there’s nothing better than talking to other cancer survivors.

Just remember that even though the medical treatment is necessary, just remember that is not all of it.  There’s a lot more to it.  There’s a lot more in your everyday life as a person that you need to work with.  All your activities and everything you do doesn’t have to revolve around cancer once you get through treatment, it’s really good to find some supportive people who can help you move back into a more comfortable everyday existence.

Joe:                 Cool.  Let’s say I’ve finished treatment and I’m getting the all-clear, which are the words everyone wants to hear.  If you had the survivorship step-by-step manual, Alene, what would you suggest what are the things you should be doing as a cancer survivor?  Why is it important to get involved in other things?

Alene:              I have a program.  I’m just going to talk from that.  It does follow that trajectory from immediately after treatment, until you start to move through recovery.  The most important thing is to not expect too much of yourself because people think they’re going to feel better sooner than they actually do.  When they don’t feel good and they set expectations for themselves, then they can be disappointed when they don’t feel good enough to achieve those goals that they set for themselves.  You need to set goals that are realistic and not expect too much of yourself, just accept that you’re going to need time to recover.  Again, with the support groups or another survivor, you get validation from them.  You need validation from other people.

You need to be patient with yourself.  Then, as far as what to do, first, you’ll be thinking about your immediate post-treatment needs, yes, you’re going to need that support, you’re going to need to be patient with yourself, realise that your body takes time to recover.  Then to start thinking about things that are going to relive fatigue, physical activity, good nutrition, controlling your weight, whether it means regaining weight that you lost as a result of being sick, or sometimes people gain weight as a result of the treatment.

Learning how to take care of yourself and restore your wellbeing, being able to say no and set limits, not taking on too much, paying attention to your emotions and your mental health needs.  It’s very important to reach out to a professional if you’re feeling depressed or anxious, which almost everyone goes through depression or anxiety to some degree after cancer treatment.  It’s very important to realise that you don’t have to go through that alone.  You really should reach out for help because it makes it much smoother.  Then learning what you need to learn to advocate for yourself and your follow-up care, to make sure you get the best care possible as you move away from treatment that you get your check-ups.

Also, knowing as much about good health information as possible, so boosting your own health literacy in areas that you didn’t know before.  Thinking about, and this is all as you move further away from treatment, then when you’re several months to a year out, then you can start thinking about setting some goals or how you want to grow in the future.  Personal growth and moving forward.  It’s really important not to set any expectations or too high a goal too soon.  You really need to allow yourself to have that time.  It can take a year or more.  You do have to be patient.

Joe:                 You touched on dealing with emotions and worries, so what are some of the tools that someone can use right now, just to have a better life after cancer?  Even during cancer, to deal with these emotions when they inevitably come up?

Alene:              Well, one of the things that I suggest to everyone is doing as much physical activity as possible.  It does have a mood stabilising effect.  It helps you clear your mind.  That’s one thing that you can do.  I talked about, again, finding support, finding other people who have been through it, finding mental health professionals, and don’t be afraid to ask for help, don’t feel that you have to go through it alone.  Cancer is just not something that anyone should be expected to handle alone.  In support groups, a lot of times they’ll have specific information about dealing with those feelings and mental health professionals that you can reach out to.

For example, my program: cancerharbours.com, that has some materials that you can use to deal with some of those emotions and worries.  I always say that the best source is going to be someone who has been through it.  First, talk to other survivors, see what they did and don’t be afraid to open up and reach out for help.  Then, as far as your physical health and wellbeing, like I said, physical activity is very important.  If you’re able to walk, that is the single easiest and best way to improve your health and wellbeing.

You can make it interesting.  You don’t have to make it exercise, you can just make it an activity that you go out and do.  You can walk around in shops or museums or parks or something, just go see things that are stimulating and that will help you either learn something or help relax your mind.  Find someone who can do that with you, so that you have a friend.  Just be creative about it, to the greatest extent you can.  You’re going to get more benefit from the activity that way.

It won’t feel like exercise but you’re actually helping yourself physically, you’re helping your physical fitness, you’re building muscle mass, which you may have lost during treatment.  It stabilises your mood, it helps your digestion, it improves your appetite, it improves your overall health and may prevent some other diseases.  You just can’t beat it for an activity.

Joe:                 Fantastic.  I guess it sounds to me like what you’re saying is the first number one priority is to really ground yourself after treatment and not really expect too much and set realistic goals?  Then connect with other people who have been through the same thing before.  The next thing is to really focus on your emotions and make sure that you’re handling that side of things.  Maybe seeing a specialist, like a therapist.  Then, also, of course, working on your physical side of things and starting where you are.  Maybe walking or doing other forms of exercise.

Alene:              Yes.

Joe:                 Like you mentioned, you’ve got your own approach to exercise, right?

Alene:              Yes.

Joe:                 What does that look like?

Alene:              My own approach to exercise?  I recommend walking to anyone who is able to.  Then there are lots of other activities that you can do that are both therapeutic and work both the mind and the body.  One of the programs that I developed is called Fierce.  It builds on enjoyment of physical activity and it’s in a supportive setting of cancer survivors.  What I do with that is, I bring in community practitioners who are experts in different types of therapeutic movement or healing modalities that involve activity.  We do yoga, tai-chi, Pilates, Reiki.  We have physical therapists and occupational therapists come in.  We’ve had people come in and do biofeedback.

We’ve had other activities like boxing.  We do so many different things, but this program is a chance for people to experience different ways to move.  What works for one person might not work for the next person.  You need a chance to explore that.  That’s where my fierce concept comes in.  You try all of these different things and then hopefully, someone will find something they enjoy.

You’re only going to do it if you enjoy it, it’s really important to find something that you like.  If you’re the type of person who does not like exercise or a routine or feel like they have to stick to some kind of strict guidelines, something like this is great because you get a variety and you can try different things.  Like I said before, if you can make it fun, go out for a hike or go walk around the downtown of your city.  There are different things that you can do so it doesn’t feel like exercise.

Joe:                 Yes, it sounds great, Alene.  Yes, when you get variety, you get to experience different things.  Like you say, it gives you a chance to try something and find something you really like.

Alene:              Yes, and physical activity is very good cognitively for clearly your mind and it improves blood flow to your entire body, including your brain.  It’s just a great form of therapy, really.

Joe:                 Yes, absolutely.  I couldn’t agree with you more.  Like, this is probably the best advice my oncologist gave me was during treatment and during recovery to go for a walk every day.  No matter how crappy I felt.  I did it and it’s helped me so much.  I developed this into a habit and I still do it to this day.  Every night, I go for a walk and I love it.

Alene:              That’s great, yes.  That is great advice, yes.

Joe:                 Alene, I know you have a unique perspective on the healthcare system, you kind of have a holistic view of the system, you’ve experienced it as someone who has been an oncology nurse, but also as an advocate and a health coach.  You help people through recovery.  You see folks from different ends of the spectrum.  What is the best advice you can give to someone who’s going through the system right now?

Alene:              I think it’s important to remember that when you’re in the system, they are treating your disease, they are treating cancer.  They’re not treating you, the person.  No matter what they say, they’re focused on treating the caner and eradicating that.  just remember that the part of you, the whole of you, you are a person.  You’re not just a patient.  You’re going to have to find a way to restore yourself as a person and don’t expect that to come from the clinical side of things, from the medical profession.

Unfortunately, you really are on your own with that.  That’s why people like myself and other coaches want to help people because medical treatment doesn’t help address how this whole experience effects people’s everyday lives, and how it extends into their lives beyond the medical treatment of cancer.  Just remember that restoring yourself as a person is a whole other part of this experience.

You won’t have a whole lot of time and energy to spend on it when you are going through treatment, but once you’re through treatment, just remember, that part is going to have to come from you and from reaching out to other people and finding your resources.  Just don’t expect to find the answers from the medical community.

Joe:                 Cool, that makes so much sense, Alene.  I know you’ve got a book out, which is great, so tell us about that and how can someone also find that book and find out more about you and what you do?

Alene:              My book, it’s on Amazon, it’s called: Navigating the C, A Nurse Charts the Course for Cancer Survivorship Care.  To find out more about it, go to Amazon, it’s both on Amazon UK and U.S.  You should be able to get it anywhere.  You can also go to my website, which is: Cancerharbors.com.  I also have a Cancer Harbors page on Facebook.  Navigating the C, the book, is a look at the healthcare system and how all the different stakeholders in the healthcare system can do a better job of working with people who have cancer and of helping the whole experience be less difficult and traumatic.  It’s talking to all the stakeholders in the healthcare system.

Physicians, nurses, patients, caregivers, administrations, politicians, anyone who has any kind of influence on the whole process of going through cancer, cancer treatment, after treatment.  Then also people who have never had cancer before.  What it does it, it talks about all the different ways we can do a better job around cancer.  One of the things in the book that I introduce is what I call a cancer literacy program.  Where people who have never had cancer before can learn about cancer.

They have a more realistic idea of what it is and what people go through, so that if at some point in the future, either they are diagnosed or someone they love is diagnosed, they will have an idea of a few things they can do beforehand that they can have in place, it doesn’t take a lot of time or energy, but just to be a little bit more prepared for what they might face.  Being a little bit more prepared to interact with the healthcare system.  Having a few things in place in your life that would make it easier, like in advance of every being sick, figuring out who would you ask in your life who could help you. Who could you rely on as an advocate to go with you to doctor’s appointments, or to help you get help with things that you need help with?

Who could do the grocery shopping?  Who could take care of your dog or whatever it is that you would have to figure out when you’re under the duress of having a new cancer diagnosis?  If you can just figure out a few of these things in advance, and it’s not just for cancer either, it’s for anything, any health situation or any unexpected emergency.  Just some things that you can do to make the whole process a little bit easier.

Joe:                 Fantastic.  Thanks so much for your time, Alene.

Alene:              Thank you, Joe.  Thanks for having me.