Simplify Cancer

If there one thing that I regret throughout my cancer adventure, it’s not being properly prepared.  There’s a lot going on and it’s easy to forget about your symptoms. You forget to tell your specialist what’s bothering, so to help you with that, in this episode you’re going to find out about Cancer Aid, a mobile application that helps you track your symptoms and so much more. I’m talking to Raghav Ganesh-Murali, COO of CancerAid and in this episode, we cover:

CancerAid

CancerAid Wins $500,000 on Shark Tank (YouTube)

Simplify Cancer First Visit Oncologist Checklist

Joe:                 Raghav, how did Cancer Aid come about?  What problem were you guys trying to solve?

Raghav:          Yes, so CancerAid is basically a solution to a problem that we save whilst working in clinical practice.  My background is as a radiation oncology specialist.  I trained here in Sydney.  Basically, when we saw patients, we often were able to see the same problems time and time again for each of these patients.  We did a survey of a few patients at the hospital we work at.  We work in Chris O’Brien Lifehouse.  We saw four main problems.  To start with cancer patients and some of their diagnosis, they were looking for the right information.  During treatment, they wanted tools to help them manage their illness.

They wanted to be able to connect with other people, their family, their friends and share with them their experiences, so they didn’t have to repeat themselves.  Lastly, they wanted to connect with other patients that have gone through similar experiences and reduce the isolation that was perceived.  We took those problems onboard and came up with a solution to try and address some of those problems.  It took about a year to design it and Cancer Aid was released in August 2016.  To answer the four problems, we provide patients with the right information, peer-reviewed, medically reliable information.

The second part, we give patients a personal journal and a symptom journal, so they can record their experiences and log their symptoms.  The logging of the symptoms was especially important because patients were better engaged for health with better outcomes.  Very recently, there has been some strong randomized evidence that has suggested that patients who logged symptoms share that with their clinicians, actually can potentially live longer, which is very exciting.

The third solution, which was connecting family and friends, we’ve got a component inside the app called the Champion’s Feature, so a patient who we call the hero going through their treatment can nominate a friend or family, a caregiver through the app and they get a deep link.  They click on the deep link and they’re able to access the hero, which is a patient’s profile and can read what the journals they are logging are.

That helps with motivating a patient who’s going through a tough time, so they can log their journal and then they can share with the people that they choose to read with them.  Lastly, the community, we’ve got a static community, not a dynamic community, which means patients can read about stories from other patients that have gone through similar experiences.  Eventually, this will become a more dynamic community, where they can track other patients, but right now, it’s simply reading stories.  There are a couple of reasons we haven’t done that yet, but it’s in our pipeline, we’ll get to it over 2018.

Joe:                 That’s fantastic that it works on so many levels.  It benefits the patients, it benefits the doctors, it also benefits the community people who want to help out.  You guys have had quite a journal from being an oncologist here in Sydney in Australia, and you got the investment from Shark Tank, where you had to justify the value of your application and the value that it delivers.  Can you talk about that experience and what you got out of it?

Raghav:          Yes, good questions, Joe.  Shark Tank was a really interesting experience.  For us, neither of us had really been on television before and it was an opportunity to basically share our message with the rest of Australia.  That was a great opportunity to do that.  Certainly, CancerAid is an innovation and for any innovation to succeed, it required funding.  Funding comes in two forms, whether it comes from a sustainable business model or grant funding.  CancerAid is a business model or had a sustainable business model where the app is free to patients, it will always remain free to patients.

We license the technology to hospitals because we improve their costs.  Therefore, there’s a dollar cost there that will serve as a return on the investment from the hospital.  That was the idea.  We took it to Shark Tank and we said, we’re creating a socially responsible business, this app is free to patients and this is how we commercialise it by providing value to hospital, insurers, and pharmaceuticals.  At present, we only have a commercial business model that’s sitting with hospitals and insurers.  That was well received on Shark Tank.  It was actually quite nerve-racking, we were in the tank for about 15 minutes, so there were a lot of questions to and fro.

It was actually a really nice experience, we got asked about the journey for how we developed it and what we were doing when we started the process and how we came up with the idea.  All the bits and pieces and the evolution.  We were actually lucky enough to get five offers from five of the sharks.  We ended up going with Andrew Banks, who’s been a really good asset to our business, going forward.

Joe:                 Yes, I’ve seen that on YouTube.  It was pretty confronting, wasn’t it?

Raghav:          Yes, it’s pretty confronting, you get quizzed, but then you forget where you are, and it becomes a conversation.  The it becomes a conversation about something that you’re deeply passionate about, which is CancerAid for both myself and Nick and Martin who was on the show, as well.

Joe:                 Yes, absolutely.  Cancer covers a lot of ground, as you talked about, so can you talk about how the patient benefit from it can the most.  If you’re a person who just downloaded the app, what is the best way for you to use it.

Raghav:          Thanks for asking that questions, Joe.  At the end of the day, Cancer Aid has to create some sort of clinical value.  The strongest aspect of the app, which there are many aspects of the app that are helpful.  The app that patients find very useful are the stories about other patients.  One of the key messages that I really wish to share with patients who I look after, or who might listen to this podcast is, those patients who are more interested in their health and take more engagement in their own disease and their illness and their symptoms have better outcomes.

Last year, at the largest cancer conference in the world, there’s a randomized study that was presented, in terms of medical literature.  What is showed was a very simple thing.  Those patients that logged their symptoms regularly, like their pain, their nausea, their vomiting, and then shared that with their clinicians, had better outcomes.  Not only were they more satisfied, so it improved satisfaction, they reduced the risk of admission.  They had ten percent less risk of admission.  Really importantly, they actually lived longer, so that in that randomised study, they had a survival advantage over the patients who didn’t log their symptoms.  That’s a really strong metric and something I really wish I can convey to our patients, to try and take more engagement in your disease, certainly within the limits of how you can.

Then if we can share that with our clinicians who are looking after you, the doctors and nurses, it’ll help them make decisions about the care together.  That’s one of the really strong messages I wish to send out.

Joe:                 That’s a great benefit.  I know from personal experience that if I had a dollar every time I walked out of my oncologist office and gone, like, I should have asked him that.  It’s so important because you just forget, don’t you?

Raghav:          100 percent.  Patients, in your recent memory of what you’re thinking you have to juggle and you go to the oncologist and you speak about those little problems, but if you have been tracking your symptoms over the last few weeks, and then when you go there, you say, “Hey, this is what I’ve been tracking over the last few weeks.” There’s a graph to say, “Hey, my pain is getting a bit worse, my pain is getting a bit better.”

It’s really powerful in terms of how we can direct the discussions, both in the patient’s point of view because they feel like they’re empowered in their own care, and for the clinician because they have more points of data, objective data to make decisions.  That shared decision-making becomes really good and that improves the communication.  That’s one of the key aspects of what we’re trying to do.  Cancer Aid is launching an integration into the medical records, so it makes this process simple.

Patients download the app, log their symptoms, and then they go to their clinic appointment, it’s already embedded within their electronic medical records.  The doctors or the nurses pick up the patient’s screen, open up the medical record, and they can see all the patient logs, which is pretty powerful.

Joe:                 That is very powerful.  What happens when patient is dealing with a number of conditions?  Maybe they have other chronic diseases and they’re also managing those symptoms, how does Cancer Aid help with that?  Does that mean that the oncologist will have to redirect their queries?  How does it work?

Raghav:          Good question.  The symptoms they’re going to log are 16 symptoms that are not unique to cancer but cover most cancer symptoms.  There’s also a space where you can add other symptoms and free text whichever symptom you wish to log.  Now, certainly, in my experience, most oncologists will be comfortable dealing with the symptoms that generally are due to the cancer or the treatments related to that cancer.  Yes, you’re right, lots of patients have other chronic illnesses.

Care isn’t given in silos, care is given in a multi-disciplinary setting, where you have your family physician, your emergency physicians, your other specialists, allied health, nurses.  I think having the ability to log your symptoms in one place.  The patient has that record and they will just share that with the other people looking after that particular patient.  It’s pretty useful.  It’s hard to say that there are one or two specific examples of how an oncologist would manage non-cancer symptoms, but certainly within reason, most oncologists would try.

At the same time, it’s important to have some expertise if it’s a specific symptom related to a specific condition.  Potentially, it might be better treated by the specialist or the general practitioner who’s looking after that condition.  There is that concept, as well.

Joe:                 Yes, that’s great.  Have you had any feedback from oncologists, from medical specialists with patients share their symptoms through Cancer Aid?

Raghav:          Yes, we spend a lot of time.  We’ve had over 300 clinicians, both doctors, nurses, allied health, give us feedback on the designs of our new clinician link, which allows patients to connect with the electronic medical record.  It’s been a really overwhelmingly positive response.

I think doctors welcome better communication with their patients and things like that are easy and within their workflow.  Often, it’s time is a big pressure for the clinicians in the hospitals.  Anything that reduces their time taking to get the information, if they can get good information, good quality information and see that about their patients, there’s certainly a lot of use in that.

Joe:                 That’s really important.  I know that tele-medicine is a big part of Cancer Aid, as well.  What is it and how can it help?

Raghav:          Tele-medicine traditionally is a video consultation.  The current Cancer Aid app doesn’t have a video consultation with patients.  There are a lot of other technologies that have done that, and we don’t necessarily believe in redefining the wheel.  The way we do our tele-medicine is a slightly different tele-medicine.  It’s what we call the Champion’s feature, where patients can nominate friends or family.  The friends or family have the access to the patient’s profile in real-time.  It’s a bit like a Dropbox but patients can use it as a journal, so they can log their symptoms in their personal journal.  Then their friends and family can access it.  It’s a slightly different form of tele-medicine.

Joe:                 Okay, got you.  It’s good to know that I got it completely wrong.  I know that cancer is a really tough time when you go into treatment or you’re waiting for results, so having your true supporters on side is hugely important.  Can you talk a little bit more about how Cancer Aid helps with that?

Raghav:          It is a very isolating time.  It’s a time when patients who have a support mechanism, whether that’s a clinician or whether it’s the hospital provided support system, or it’s friends or family.  Those patients who have that support mechanism because you need to rely on someone else, is pretty important, pretty helpful/powerful.  With the Champion’s component, when we survey patients, a lot of what they didn’t want to do was go around to each one of their supporters and say, “I had pain, I had nausea, I had vomiting” and repeat themselves a multiple amount of times.

They said, can you guys help us voice it, so we just invite people to view what we’re logging, then supporters of mine can come access it and see what I’m logging, and they can provide support.  I’ve got pain or nausea, they can say, “I can help you with my appointment, or I can drive you to the clinic, or I can cook diner for you.” Having the ability for a patient to log their feelings, their emotions, as well as their symptoms, and then sharing that with the people they choose the share it with.  It’s not that we choose them, we don’t get access to it.  They have to invite that person to view those logs.  That’s how we’ve created that supportive link.

Joe:                 Yes, that’s fantastic.  What feedback do you see from people, people who are using it?  Do they see that friends and family are responding and helping them through it?  Is that important to them?

Raghav:          100 percent.  We have thousands and thousands of reviews from our patients with comments.  Most of them are very positive, the striking majority.  There are some which are not so much negative, but they give us some feedback as to how we can improve the app.  Actually, those are as valuable as a positive feedback.  The positive feedback is great for us to know we’re doing the right thing and creating the right technology.  At the same time, the feedback people give us as to how we can constructively improve the app is very valuable to us and we really welcome that.  We do a lot of feedback mediation sessions.  Always welcome to those comments.

Joe:                 It’s fantastic that you get feedback and you proactively working it into the app.  I think that’s really great.  Another question I want to ask you is, with Cancer Aid, really you are at this really interesting intersection between patients and caregivers, medical specialists and researchers.  What unique challenges do you see for all of these groups of folks coming together?

Raghav:          Yes, so everyone’s challenges are slightly different.  Hospital providers have a different challenge to insurers, and even within hospitals, each of the different providers your name, the doctors, the nurses, the researches all have slightly different challenges.  Trying to find a solution that fits all of them is not always easy.  Personalising it does happen for us, so we try and create personalisation through it.  It really depends on what the clinical problem we’re trying to solve is.  How is this really going to affect the patient, how’s this going to improve the journey for the patient?

At the same time, what is the commercial use case for doing this?  A lot of the time, we need to build a new technology, we have to answer those two questions.  Are we really improve the care journey for this patient?  Secondly, is this a sustainable model if we’re just doing one build for one person?  It doesn’t always make sense.

Joe:                 Of course, what are some of the biggest challenges for cancer survivors?  Does CancerAid help with that side at all?

Raghav:          Thankfully, I have not been a cancer survivor, so it’s hard for me to know exactly what the biggest challenges are.  From what I hear and from what I see in clinic, patients are often very fearful of recurrence and even after a diagnosis of cancer and finishing treatment, it’s something that is really in their mind.  Some patients are looking for clinical trials, some other patients are looking for other patients who have had similar experiences to share their experiences.  We provide that, so in our CancerAid community, we’ve got a survivorship page where we talk about nutrition, exercise, how patients can utilize the tools within CancerAid to aid in their recovery.

One of the examples I’ll give you is that in the next few weeks, actually, we’re really excited to launch this, is integrating the step count.  Every Apple device counts how many steps you walk.  Integrating that into the symptom tracker.  When a patient is walking X number of steps, they actually can map that against their symptoms.  If they’ve got fatigue and you see the number of steps they’ve walked are lower, that really helps them because what they’ll then know is to understand that my step count is related to my symptoms, and can potentially can improve their step count, increase their activity, and reduce some of those symptoms.  Those are some of the tools that we use for survivors within the app that can give them some benefit.

Joe:                 Yes, from experience, I know that this feature would also be helpful for patients.  I know that when I was going throughout chemotherapy, that my oncologist advised me that the best way to deal with fatigue is through exercise.  It actually really helped me a lot to build up that habit.  That would be helpful for patients, as well, hopefully.

Raghav:          I agree, yes, 100 percent.  Also, about smaller things, about normalisation, as well.  We write articles, potentially about patients returning to work.  Not everyone returns to work, some do, some don’t.  There’s a difference and it’s not our job to tell people to do or not to, but what we can do is amplify the message with some patients who have chosen to return to work and have us help them, or some patients who have chosen to stay away from work and how they’re coping with that and amplify that story, and be a platform for other patients to resonate to those stories.  To say, “Actually, that normalises my experiences” and then they can potentially see that as beneficial to reducing anxiety or if they had any anxiety related to it.

Joe:                 Yes, exactly.  One way or another, it’s the new normal.  You’re going back to a very different life to the one you had, that’s not always a bad thing.  I think in many cases, you find other benefits, you find a new appreciation for life.  I think it’s very important to see, inside Cancer Aid, it’s very important to see stories of people who have made it through to the other side and that they can share their experiences, right?

Raghav:          I completely agree with you.  It allows patients to read those stories, unless you don’t get access to those stories, quite often.  A lot of patients want to share their stories, so we provide the channel to do that.  We get a lot of inbound requests from patients who want to write for us, which is really nice, and we love that, and we amplify those stories within our platform.

Joe:                 In your opinion, what is the best thing about CancerAid?

Raghav:          As a technology or as a whole?  What do you mean?

Joe:                 I think about the technology and how it enables outcomes for people?

Raghav:          Yes, you hit the nail on the head there.  Creating technology that’s scalable instead of just being the doctor in the clinic where I see maybe five or ten or fifteen patients, Cancer Aid is a way to scale better outcomes across the globe.  It’s a digital piece of technology, very important that symptom tracking.  One of the key messages for us is to get patients to track their symptoms, log their symptoms, understand the rate of change of those symptoms.  Then be able to have better communication with their clinicians and realise those improved outcomes.

One of the things I keep saying to our team is, we are building technology that we are privileged to build, and that patients will be using.  By using this, we potentially could actually improve their lives and their length of survival.  It’s a really powerful position to be in.  It’s a really strong rationale as to why we do what we do.  We constantly remind ourselves that we’re doing this for those reasons.  Yes, we continue to try and create clinical value.  At the same time, underlining that by a sustainable business model.

Joe:                 Yes, that’s great.  With all the exciting technology coming our way, like artificial intelligence, what does the future hold for us in your opinion when it comes to digital health?

Raghav:          A lot of digital health requires engagement from people.  If I simply gave, for example, you or another patient technology, the technology needs to be engaging.  There are a lot of fancy words, AI, VR, AR, and so many acronyms.  I think they’re all great because they’re all an advance in technology and we embrace advances in technology, even AI, we’ve got plans for how we can utilize AI within Cancer Aid.  The key message has to be about how does this improve the engagement of the person using the technology.  How do we get them to do the activity that’s going to provide the best benefit?

If you’re able to answer that question, the answer to that question is more sophisticated technology?  Then great.  If the answer is just having an acronym or one of these novel technologies inside the app just for the sake of it, I don’t think that’s quite the right answer.  It has to serve a purpose.  For us, that purpose is to really improve patient engagement of our technology.

Joe:                 That makes a lot of sense.  When you talk about engagement, you mean engagement with the oncologist?

Raghav:          I mean utilization of the app.  For example, symptom logging or personal journal logging requires input from the patient, it’s sometimes an onerous task.  Let’s say you have other things on your mind, you have treatment, or you’re not feeling well, the last thing you’re going to do is to feel like you have to log your symptoms.  There has to be feedback for the patient by logging, there’s going to be a material benefit to your care and creating those feedback loops and creating that value is challenging.  That’s our job.

Joe:                 How does CancerAid work with those feedback loops at the moment?  How does it encourage someone to go in and put in their feedback?

Raghav:          Yes, so if someone logs their symptoms with our clinician link, which is the electronic medical record integration.  The patient is at home, they log their symptoms, when they go to the clinic, the doctor and nurse have already got on their screen the symptoms that you have logged.  We have connected the patient to the doctor digitally, so that the patient can continue to log their symptoms.  When they go to clinic, they get to see a graph of those symptoms and how they’ve changed over time and therefore, improve their decision-making.

What the feedback loop is that they log their symptoms, they get advice and management of their illness changes, so they’re more motivated to do it next time.  They’re like, “Okay, because I logged my pain, they were able to make a decision on what pain tablets to give me.  Let me do it again.” That continues and gives them benefit and gives the clinicians a benefit, too.

Joe:                 Okay, that’s fantastic.  I hope that as many people as possible get to use this app and log their symptoms and hopefully get better outcomes.

Raghav:          Yes, no, I agree.  Thank you.

Joe:                 Thanks for your time.

Raghav:          Thanks, Joe.

In this episode, I’m talking to Bogda, medical oncologist who shares some great insights if you’re facing cancer right now, or if you’re building a life after cancer.  Bogda breaks down what to expect when you’re talking to your oncologist, advice on dealing with stress, why oncologists are here to guide through the tough times as well as closing the loop with your general practitioner, as well as other specialists you might be dealing with. In this episode, we cover:

Finding My Way

Bogda’s Academic Profile

Simplify Cancer First Visit Oncologist Checklist

Joe:                 Bogda, thanks very much for taking the time to do this, I really appreciate it.

Bogda:            Sure.

Joe:                 Bogda, as a medical oncologist, you often have to give people the bad news.  How do you do that?  How do you tell someone that they’ve got cancer?

Bogda:            Sure.  The first thing to say, Joe, is actually medical oncologists don’t do that very often because we don’t diagnose cancer.  Very often surgeons do.  We tend to be the second person who raises the question of cancer, or we might be the person who might see the patient after someone might have said, “This is very likely cancer and you will to see somebody to see the final diagnosis.” Many of our patients are prepared for the bad news when they see us.  It’s not like we deal with issues in a completely unexpected scenario.

What we do quite a lot of is we might be the people who talk to the patients that the status of the cancer has changed.  We might be seeing who we’re treating with the hope that we might cure the cancer and then it becomes apparent that the cancer is no longer curable and growing.  We may need to tell that news and that’s often a very distressing scenario for all involved.  How do you do that?  The first thing to say is that you have to be honest about what you’re trying to tell, and you have to be accurate about your information.  There’s no point talking about something where you really haven’t done your homework.  You need to get your facts right.

You have to have all of your information available.  There’s no point starting the conversation and then saying, “Actually, I’m still waiting for one extra test” because that is really distressing and confusing.  What I tend to do is I tend to try to prepare patients that a difficult conversation is coming.  I will say, “Look, we need to talk about such and such, is it okay if we talk about it now?” That gives a person the option to say, “I really don’t want to talk about it now, or I want somebody else to be with me when we’re talking, or I’m finding it really surprising.” To give themselves some room to deal with things, preparing and warning that something is coming is important.

Secondly, when I talk about what’s happening, I try to keep the language quite simple.  Sometimes in oncology we tend to use very misleading terms, like growth, condition, diseases changing, and you don’t know what that really means.  I think that if you’re really going to say something, try to keep it as accurate and as simple and as brief as you can.  I think cancer is growing is pretty unambiguous, but things are not looking so good could mean anything.  I think you need to be quite precise.  I tend to move onto what can be done quite quickly.  People are interested in not just what happens, but what can be done about it.  That allows them to focus on something positive.

Usually, there is a lot that can be done.  I try to tell what their situation is, identify what can be done and I finish off by trying to draw on strengths of the person I’m dealing with.  Dealing with cancer is not the first stress that people experience.  They will have had lots of stressors and disappointments in their lifetime and they’ve gone through them and managed things.  It’s useful to say, “When you were in a very difficult situation before, how did you cope?  Did you rely on friends or family?

Did you take some time to plan how you’re going to approach it?  Did you get professional help?  What helped you then, because we’re going to use those resources this time because we know they worked for you before and they should help again.” I think there are a number of steps to use, the key issue is honesty, simplicity, and focus on what can be done as opposed to what can’t be done.

Joe:                 That makes so much sense, Bogda.  I’m so glad that you brought up the idea of not using the medical jargon.  I spent a lot of years working in IT and I know that I had to adjust my language when I’m talking to someone who isn’t a specialist in IT, in order for them to really speak the same language.  That’s really important.  Is there a way that you would recommend for people to prepare?  I know from experience that when you go to see your oncologist or another specialist, like you show up, you have no experience what to expect, you’re a wreck, you forget the stuff you wanted to ask, and the other half you forget the minute you walk out the door.  Is there anything people can do to prepare themselves?

Bogda:            One of the very simple strategies is to bring somebody with you.  They know you and they recognize when you’re looking a little bit distressed and you may not necessarily have the courage to start the conversation yourself, but somebody sitting next to you will say, “Hang on a second, we really didn’t understand that bit.  Can we go back and talk about such and such?” Having a person to help you is often a useful idea.  A friend, a family member, somebody that you can bring with you is a useful strategy.

The second thing is to think about what it is that matters to you, what sort of questions would you want to ask.  It’s often useful to have a list.  Many of my patients would have a conversation with me and would say, “Hang on a second, let me look at my list.” They will have a quick look and say, “Okay, we’ve covered everything, but we haven’t covered this, can we go back to that?” When you’re stressed, and your mind tends to wander, and you don’t know whether you’re going to cover everything, think about your list and check against it.  The other thing is don’t be afraid to ask to meet again.  It’s not that the conversation happens only once and it’s very useful to go back and ask, “Could we meet and discuss this again?

Or is there anything I could read about what you’re just describing?  If you’re describing a particular cancer treatment, can I have any written information about it?  If it’s any types of supports, are there any written resources that I could look at in the comfort of my own home?” There are many ways of meeting people’s needs and that doesn’t have to happen in one encounter.

Joe:                 That’s such a fantastic point, Bogda, because sometimes people can feel so powerless that they don’t really have any control and what you’re saying really puts the ball in your court when it comes to dealing with cancer.

Bogda:            I think it’s worth remembering that for an oncologist, it’s helpful to have an informed patient.  It’s in the interest of the oncologist to keep you informed and content that you have all of your needs addressed appropriately, because when people feel like they’re not really well-understood, their needs are not met, they often are more distressed, they often don’t know how to manage the treatment and their condition and they’re more likely to have problems.  Nobody needs problems.  I think it’s in everyone’s interest to make sure that everybody is happy.

Joe:                 Yes, absolutely.  Bogda, do you believe that people with cancer get the support that they need mentally, emotionally, socially?

Bogda:            Not always.  I think that it depends on how good the process of identifying what the needs are.  Sometimes oncologists don’t ask, sometimes patients don’t tell, and sometimes a bit of both.  Oncologists tends to not ask about problems that they feel ill-equipped to manage.  For example, if they’re not very comfortable talking about emotional problems, they’re not going to go there.  Whereas, oncologists who are comfortable about talking about emotions are more likely to say, “How are you doing?”

One example is that I have had stories of doctors, not necessarily oncologists, that would say if they patient is crying in my office, that means that they need to see a health professional because that’s an emergency.  Whereas, there are many of us, including myself, who think, well, my office is a very safe place, so if crying is what you need to do, that’s okay.  It’s not going to tip me off or get me to change the subject.  I think that’s relevant because we know that if we train oncologists to be more skilled in asking the right questions, and listening to the answers, then more issues are uncovered, and those issues are more likely to be addressed.

Sometimes patients often don’t talk, sometimes they talk about things because they’re embarrassed.  For example, a female patient might be uneasy about talking about sexual difficulties with a male doctor and vice versa.  Sometimes patients feel that their concerns are really not on oncologist’s brains.  They might have financial difficulties and they may say it’s not the doctor’s job to fix it, so I’m just not going to mention, I’ll just grin and bear it.  Sometimes they have an inaccurate expectation of what their experience should be like.  50 years ago, having cancer treatment meant that you vomited non-stop.

If a person believes that vomiting is your lot in life, you wouldn’t raise it as an issue, you would just keep on vomiting because that’s what you expect as normal.  Again, this is where preparing patients for what is considered normal and what is not normal can help.  I think that there are lots of reasons why people’s needs may not be met, but we know that they are not always met and there is certainly room to move for all of us.

Joe:                 Absolutely, Bogda.  Is there something in the curriculum, like if you studied to become an oncologist, for want of a better word, is there a subject that you would take as part of your course that would be like emotional side of dealing with patients?

Bogda:            Well, there are a number of curriculum items that relate to it.  The first one is that medical oncologists in Australia are expected to undertake mandatory communication skills training.  That includes breaking bad news and identifying issues and so on.  Oncologists are supposed to develop some skills in communication.  The second issue is that oncology training is a training on the job.  Which means that if your colleagues and your senior colleagues, in particular, notice that your communication skills or your awareness of patients’ needs is poor, then that will be identified as a specific topic to address.

There is a not necessarily new but growing field of psycho-oncology, which allows oncologists to really get interesting and psychosocial needs of patients.  There are some very good training opportunities, as well as research opportunities in this area.  There is no doubt that different doctors have different affinity for the topic, but there is a certain minimum standard that is expected, where oncologists are supposed to develop skills or counter communicate with patients effectively.

Joe:                 That’s great to know, Bogda.  That’s fantastic.  What I want to ask you, as well, when it comes to people who are underprivileged and in terms of the support that they get, again, socially, emotionally, and mentally, as well, what’s your take on that?

Bogda:            I think that’s actually a very important issue because we tend to often talk about cancer care in Australia as this wonderful, high-quality service available to everybody with excellent outcomes.  The truth is that people who come from disadvantaged populations, whether this is socioeconomic, or a geographic disadvantage, their cancer outcomes are inferior, and their needs are more likely not to be met.  That is, again, for a variety of reasons, it is harder to access support in rural areas or in disadvantaged areas.

It is harder to ask because people often feel less entitled.  Sometimes they don’t have the language skills.  Sometimes they don’t have the awareness that they can ask for support.  Clinicians may not necessarily customize the enquiry to those needs.  For example, the majority of patients, it might take 20 minutes to talk about patient’s needs.  For somebody who comes with a language barrier or a particular cultural background, they may need twice that time.  The oncologists need to be aware that that needs to be provided.

In certain cultures, there are particular cultural expectations of how you communicate issues, there are language issues.  There are, again, skills required.  Those skills can be provided and there are ways of bridging the gap through, in particular, through a cancer care coordinator, and patient’s advocates who support patients.  There are ways of addressing this problem.  I think that we actually do have quite a long way to go in addressing the needs of patients from disadvantaged communities.

Joe:                 Well, hopefully, we can do more on that front.  Bogda, if you’re someone with cancer, and I know you’ve obviously seen a lot of folks who go through it, how would someone go out finding better support?  Both from people in their life and from other channels, here in Australia and around the world, are there any resources that are overlooked that people might not know about?

Bogda:            Well, I think that there are a number of resources and I think it’s worth starting by thinking about the fact that there are lots of resources within cancer, but there are also resources outside of the cancer field and are both irrelevant, depending on what the need is.  Within cancer, one of the nice resources that hails from Australia is findingmyway.org.au website.  It’s a very broad website that looks at the support of people who are cancer survivors.  That was developed here in Adelaide.  It provides a lot of information on various aspects of lifestyle.

The Cancer Councils in each state provide excellent resources that are cancer-specific, and those resources are available both online, telephone, and in-person.  Most of the cancer facilities around the country have good awareness of what’s available, both locally and remotely for patients to access that is within cancer.  I also wouldn’t want to discount the non-cancer resources.  They include going to your local library, talking to your local GP, joining in a meditation or relaxation class, learning about journaling, connecting with your peers, meeting your friends for a coffee or going for a walk.

Those are also very important.  Many people who deal with their own cancer journey, often don’t want to spend their entire time talking about cancer.  It’s often very nice to switch off and talk about something else.  I think that in cancer, as health professionals, we often tend to think about the resources available just within the cancer space, but there is a wealth of resources outside of cancer that are just as relevant and just as helpful that could be used, as well.

Joe:                 Absolutely.  I think that a lot of people might be overlooking that.  Probably they’re not using it to the best of their abilities, in terms of being able to open up and talk about these issues.  I’m sure that there are many cancers that are hard to talk about.  Do you notice any patterns, any similarities?  What would you say to someone who is afraid to bring up something personal, something that they feel awkward about?  Whether that’s with a medical specialist, like yourself, or maybe with someone in their life, like a family member or friend?

Bogda:            I think that when we’re talking about patterns, it’s worth remembering that we tend to operate within the patterns we always have.  That means that some of those are very helpful and they work very well, but we also tend to repeat not necessarily helpful patterns.  Examples of it are people who say, “The way I cope with stress is by keeping busy, so there are certain things that I’m just not going to deal with because I’ll just get busier and never go there.” I think it’s worth finding a little bit of time for a bit of self-reflection on how I am travelling on the regular basis.

If you’re travelling great and all is fine with the patterns that you’re using, good for you and keep at it.  If you find that things are not so great, then perhaps the way you’re going about them requires some refreshing, and this is where getting some professional help is often useful because you can count on confidential advice.  You don’t have to feel that you owe the professional anything for providing a service, that’s what they’re there for.  Whereas, with a family member, you cannot be confident that they will always hold the information confidential and you may rely on their generosity to give you time.

Their skills may be variable.  I actually think that when in doubt, seek some professional help.  There are a range of health professionals that could assist.  Many people tend to underestimate the expertise of their GPs and of nurses, both within cancer services as well as general practice nurses.  These are people who are often very happy to help and very astute with regards to what can be done.  They just may not be necessarily aware that there was a need.  Some of us come across as extremely capable and having no worry in the world, when in fact, internally, we might be suffering.  I think it’s worth flagging that there is a need in a trusting health professional.  You might be surprised at how much help you’ll get.

Joe:                 Yes, you’re so right about that because so often we forget that people just can’t read your mind, unless you specifically tell someone what’s going on in your head, people just won’t know.

Bogda:            Exactly.  Yes, sometimes you may wish to talk about issues that are difficult, so you may not necessarily want to spell out what the issue is, but it is worth saying, “Look, I’ve got some concerns that are confidential, could I could to you?” One thing that sometimes people do when they come to my office, they would have this consultation where everything is going really well, and they would reach for the door and say, “By the way, could I just ask you one thing…” and that’s when the interesting stuff really comes up.  It’s useful to ask, because, yes, the crystal ball is usually broken.  We can also look at a person and say, “Do tell.”

Joe:                 Absolutely.  Bogda, you mentioned earlier that it’s okay to make another appointment, to ask more questions, to clarify things, which I think is fantastic because that’s really important.  What if someone has questions in between appointments, or after a procedure or after a treatment?  Is that okay to ask an oncologist, like yourself, for an email address, for example?

Bogda:            Different oncologists have different preferences.   I give my email address to all of my patients, it’s on my business card.  My email address is commonly available because all you need to do is look up my name at Flinders University and it pops out.  That is the case for most oncologists in academic settings.  It’s perfectly reasonable to give patients your email address.  As long as you’re one of those people who access their emails.  I think if you’re one of those people who never answers emails, then you probably shouldn’t offer giving emails to patients because you’re creating an unrealistic expectation.

I quite like responding by email because that allows me a chance to respond outside of my work hours.  Sometimes it’s very hard for me to stop my work to pick up a phone call, but it’s okay to answer emails at the end of the day.  However, not every question should be answered by email.  I’m very happy to receive the emails, but very often, my response to the email would be: We need to meet and talk about it, because certain complex issues are not very easily explained by two sentences in an email.  It’s actually much easier to meet and talk about it face-to-face.  An email is a very good way of organising an appointment, but it shouldn’t be a substitute for an appointment.

Joe:                 That’s a great point.  If you refer your patient to another specialist, like, say, a surgeon, how do you choose that person?  Is that a part of building up your network for a period of time or is there some sort of an online forum?  How does it work?

Bogda:            Cancer care is intrinsically multi-disciplinary, so every single one of us works as part of the broader team.  Most of this team is built within the institution we function in.  A medical oncologist would work within a team of medical oncologists and connect with a team of surgeons and team of radiation oncologists and supported by a team of nurses etc.  Within those teams, you get to recognise how people operate.  You would recognise their strengths and sometimes limitation and the best fit for the patient.  For example, I may look at a particular surgeon from the perspective of: Are they very direct and therefore, really a good fit for the patient who likes a lot of very direct information?

Or would they be too blunt for somebody who’s a little bit more anxious and maybe there is a different fit, a better fit for somebody else?  Of course, I get very particular about the skill of the people I work with.  I’m very lucky to work in a wonderful institution where I genuinely trust the skills of the people that I work with and I’ve been doing this for more than 20 years, so I’ve had plenty of track record to learn about it.  I think I often reflect about how sometimes it is challenging for me to verify expertise of let’s say general practitioners that I haven’t worked with, let’s say in a different part of the country, south Australia, and how important it is to verify that they have the interest and the know-how and the dedication to support my patients.

You gather that from telephone conversations, correspondence that you exchange with them, so there are ways of telling whether the person that you’re working with is the person you would want to entrust your patient to.

Joe:                 That makes so much sense.  How often do you get complicated cases, where you perhaps want to take it to a group of experts to get their input, and how does that process work?

Bogda:            Complicated cases happen all the time because every person is complicated and very often, the cancers are complicated.  We routinely review management plan for most of our patients as part of the multi-disciplinary meeting.  That’s often a routine, perhaps not 100 percent, but very close to it, that treatment plan would be reviewed as a group.  For example, in our department, all the new patient’s decisions are discussed once a week, where we say, “We’ve seen this patient, this is the story, this is our plan.” That allows other oncologists to say, “Have you thought of such and such?” It’s a way of ensuring that we really offer the best practice to every patient.

Secondly, sometimes we will have a patient who might have a really complicated situation that required additional expertise and there are groups of clinicians, for example, in Adelaide, the breast oncologist work together as part of a state network.  Not only do I talk to my breast oncology colleagues at Flinders, I can talk to the breast oncologist for the entire state to get advice.  Sometimes there might be a really unusual situation where they’ll be a particular expert in the world for an unusual cancer and I might contact them specifically for a specific case.

We always tell patients that we’ll make contact to discuss the situation of someone else, so they are not surprised.  Oncologists, in general, are very generous with advice and usually honoured to be able to contribute to someone else’s care and very happy to share their expertise.  There’s only a benefit from it, I can’t think of any downsides.

Joe:                 That’s incredibly reassuring to know that there’s such a great process around it.  Bogda, I’m a big fan of self-help.  It’s been so fantastic to read about finding your way, your project that looks into resilience for cancer patients.  Can you talk about what that’s about and what have you discovered?

Bogda:            Sure.  Our team at Flinders, led by Dr.  Lisa Beatty, had developed an online self-help and support resource called: Finding my Way.  It’s available on the website: Findingmyway.org.au.  It’s freely available and it’s a modular set of resources that support people who are dealing with cancer treated with curative intent.  In a number of areas that include emotional, physical, practical concerns to assist them in better functioning, less distress.  We had tested the website as part of the randomised study.

We enrolled nearly 200 people in a randomised setting to either use the website with our content and sub-practical activities attached to it.  All to have access to the website in a just more limited, less hands-on way, so that you could read the content on the website but not necessarily do exercises that are attached with it.  Both groups had access to the website in some capacity, but we compared the full resource against the more limited resource.  What we had found was that those people who used the full resource had better emotional functioning.  Over time, everyone’s emotional functioning gets better, but those who used the resource actually functioned better in terms of their emotions.

What was really a surprise to us, but a very pleasant surprise was that they needed less access to healthcare services elsewhere.  This resource, which you could use in the comfort of your own home for free, improved the wellbeing and allowed people to use less services elsewhere.  Which is very important, especially for those people who have difficulties accessing other services.  We’re very excited about these resources and as a result, it is now available freely in Australia and around the world.  It has been taken up by colleagues around the world in other countries, in the United States, in UK, in Germany, Romania, to adapt it to their local needs.

Joe:                 Yes, that’s fantastic, Bogda.  It’s one of those things, like, for example, like Cancer Connect which I only found out about after my treatment, that I’m going, “Why didn’t I know about this earlier?  You know?

Bogda:            Yes.

Joe:                 Bogda, I know that survivorship is an area that is very close to your heart, so what are some of the challenges that folks typically have after treatment?

Bogda:            It depends a little bit on what treatment and what cancer they had.  It depends on an individual, but broadly speaking, there is a variety of challenges that people face, including physical.  For example, fatigue is a very big problem for many cancer survivors, as well as side effects of various treatments.  That might be physical disability after surgery or heart problems as a result of chemotherapy treatments or others.

There are emotional concerns and fear of cancer recurrence is probably the biggest there.  As well as anxiety, depression, grief.  As well as practical concerns.  Issues relating to return to work, managing financially, sometimes changing your employment status to something different for lots of reasons.  There are a number of issues.  The good news is that for the overwhelming majority of cancer survivors, their concerns diminish with time, and their quality of life improves.  There are many cancer survivors who do very well very early or straight away.

There are plenty of cancer survivors who consider the cancer experience as something that while they would never had wished for it, it also had some enriching qualities to their life.  We do know that there are many needs that need to be addressed and we do need a structural way of addressing them.

Joe:                 Is there such a way?  Is there an integrated way, do you think, that looks at addressing those needs?

Bogda:            Yes, there is.  Clinical oncology society of Australia has issued a model of cancer survivorship.  It’s available on its website.  It outlines all the different elements of survivorship care and that includes assessing the needs, developing treatment summary and a care plan that identifies what the issues are and how best to address them through a variety of resources that might be available.  The next step is really ensuring that cancer services provide and deliver that type of needs assessment and a care plan.  That’s the implementation of it.  It’s really the work that we’re working on at the moment.

Joe:                 Yes, that’s fantastic, Bogda.  I know that you are passionate about shared care.  Can you talk about what that model is like and what do you believe is the best approach?

Bogda:            I believe that we need to start from the premise that it takes more than one person to support a person with cancer.  A person with cancer usually has other needs other than cancer.  Certainly, many people with cancer also have heart conditions, diabetes, lots of other health problems, that oncologists might not necessarily be very well skilled at managing.  It is a given that some of their care needs to be delivered by others, most notably, general practitioners.  If we were to deliver care through a variety of people, that that care needs to be shared somehow between all of those different individuals.  The bit that I am passionate about is that we are explicit about it.

Meaning that we agree that it takes more than one individual to deliver care, and that we are very clear on who is responsible for what aspects of care.  Then that clarity of a plan is also clear to the patient and acceptable to the patient.  Sometimes I find it frustrating that the whole discussion about shared care is just a discussion between the oncologist and a GP, without any consultation with the patient.  Sometimes that there is an assumption that everybody knows what they’re supposed to be doing, but not explicit agreement.  I think shared care can be very useful, can save patients from unnecessary appointments, extra parking that costs them extra money.  I think that to deliver good shared care is a process that involves some investment of time to clarify roles and responsibilities.

Joe:                 Absolutely.  What about integrated care?  Is that something different?

Bogda:            I think integrated care has got a lot of definitions.  Many of us think that we know what integrated care is, but when you really get into the nitty-gritty, different people believe different things.  I think that the term “integrated care” refers to the quality of the overall care that the individual receives from the individual’s perspective.  Very often, what integration means to people is care that is connected and coordinated.

An example of care that is not very well integrated is imagining that the person has got three specialists and a GP.  They see a specialist number one on Monday, specialist number two on Tuesday, specialist number three on Wednesday, the GP on Thursday.  Every single doctor asked the question about what did the other doctors say?  There’s no communication between them.  If you think that that sounds strange, I’m afraid that does happen.

The healthcare providers should have a clear plan of how they work together, how they communicate their findings, who’s in charge for what, how do you tell that the care is simple, not excessive, flows smoothly and seamlessly, it’s not an easy task to achieve but I think it’s a very reasonable aspiration to have.

Joe:                 Absolutely, and I think that really ties into what you mentioned earlier about defining roles and responsibilities.  What do you think is a practical way?  How do you define those responsibilities?  Is it like a centralised thing or is it down to each individual person, like yourself, talking to a general practitioner and having that two-way communication?  How would that work?

Bogda:            Well, I think that this is where the patient is the key because ultimately, it has to be acceptable to them.  For example, I sometimes have patients who really need to share their care with the general practitioner.  The patient says, I don’t like my GP and I don’t have another one.  Well, I have to start by negotiating with the patient about getting a GP because it has to be acceptable to them.  I really see that empowering the patients to be a deal breaker with regards to what is acceptable to them is a very good start.  They will identify who their team is, and they will tell me who they see as the most relevant lead to lead the team for a particular purpose.

I think that those basic building blocks and be started with.  We have figured out in oncology how to bring together medical oncologists, surgeons, radiation oncologists, and we do it quite smoothly.  I think we need to broaden our horizons and we need to start bringing in GPs and cardiologists and rehab specialists.  People who are just as important but often don’t sit at the table in cancer care.  They’re a little bit invisible these days.  I think that we need to make them a little bit more visible.  We can, again, draw from the experiences that we’ve had in doing that for the more traditional cancer disciplines 20 years ago.

Joe:                 Absolutely.  I think that just needs to be in place.  I know that I was lucky that I had a fantastic GP and a fantastic urologist and really incredible oncologist, but I’m not sure that they ever really talked to each other.

Bogda:            Yes, exactly.  I can tell you that one of the highlights of my last year of work was I convened a multi-disciplinary meeting between a cardiologist and an endocrinologist, palliative care physician and myself for a patient who had a lot of general medical problems, as well as cancer.  We needed to figure out a clear plan for her that actually was not terrible relevant to cancer, because cancer was the least of her problems, but it was very relevant to her wellbeing.  We basically organized a teleconference because we were all in a different part of the city.

We talked for an hour about what we collectively can do and identified who would be responsible for what.  One of us met with the patient and said, collectively, this is what we can do, and this is that we can’t do.  That meant that she had one consultation and advice from all of us and we were very clear of our respective strengths and limitations.  I know that is can be done, it was me testing the waters and I’m certainly hoping to do more of it.

Joe:                 Yes, that’s fantastic, Bogda.  I know you’re so passionate about finding better ways to do things and improve outcomes for people.  How hard is it to incorporate research that you do into your practice?

Bogda:            It’s not very hard at all because my research originates from the clinical problems that I experience when I see patients.  The research needs and the need for research solutions are right there in my face every day of my working life.  At the same time, there’s not enough hours in the day.  There are just so many things that one could do and so little time.  It’s hard and easy all at the same time.

Joe:                 Bogda, when it comes to someone who made it past cancer and now, if they want to move forward and have the life that they want, what advice can you give them?

Bogda:            I actually think that the advice that you give to somebody that had survived cancer is the same as advice that you give to anybody for a rich and fulfilling life.  I have a little acronym called: READY, which stands for: Relationships, exercise, active mind, diet that’s healthy, and yearning.  What I mean by yearning is a passion and purpose in life.  I think that if you can focus on those five things in your life, we know that all of them have a role to play in keeping you well and cancer free.  They are also very important in general lifestyle, which really means that cancer is not that unique in the issues of health and wellbeing.  The directions for happy and healthy life are very much similar in cancer and life in general.

Joe:                 Wow, READY, is a fantastic framework.  Thank you so much, Bogda.  This has been some great advice and thank you so much for your time.  I really appreciate it.

Bogda:            It’s a pleasure.  Lovely talking with you.

In this episode, I’m talking to Rochelle who is amazing at articulating her cancer adventure in a way that’s universal. So even if your experience is different, you can still find so much that you can relate to! In this episode, we cover:

Cancer Connect

Cancer Council Victoria

ThinkHatch Marketing & Communications

Joe:                 Hey, this is Joe Bakhmoutski and welcome to Simplify Cancer Podcast.  Right now, you’re going to hear from Rochelle, who is a cancer survivor and what’s really amazing about Rochelle is that she can articulate what this cancer adventure has been like for her in a way that’s universal.  Even if your experience is different, you can still find so much that you can relate to.  I really hope that we can find an hour or two with Rochelle somewhere down the line because there’s just so much to unwrap.  For now, enjoy.  Rochelle, thank you so much for doing this.  I’ve been really looking forward to it.  First of all, tell me, how did you react when you found out that you had cancer?

Rochelle:         Obviously, there was a huge element of shock.  My symptoms were nothing more than a shallow cough, a reasonable amount of weight loss and a little bit of exhaustion.  Given that I had a new-born son, weight loss during breastfeeding was very normal to me, exhaustion is obviously part of the new-born package and I am prone to coughing and throaty-type illness, generally speaking.  I don’t get sick very often but if ever do, it’s normally a cough.

I really didn’t notice.  I think the shock of not actually feeling particularly unwell and then discovering, as a gross optimist, I think I told you earlier that I’m terrible optimistic, discovering something as significant and severe as cancer, as a diagnosis was shocking.  Almost a little bit unbelievable.

Joe:                 When you say unbelievable, how long did this feeling last for?  Did it change?

Rochelle:         My father is a medic.  He quickly diagnosed me.  I often joke that he thinks he’s like a diagnostician, like Dr.  House from the TV show.  I think he semi-diagnosed me and sent me to a doctor and as soon as I saw her, she sent me for a CT scan and shortly after that, a biopsy.  I knew very quickly that something was going on, but no one actually had used the C-word, so I didn’t actually understand the severity of what I was being tested for or what was suspect.  I think when she then called me in on the morning of my birthday.

Joe:                 Oh no!

Rochelle:         Yes, 8:30am, to say, “Listen, Rachelle, you’ve got Hodgkin’s lymphoma.” That shock was probably the result of just really not having any understanding that that’s what was potentially on the cards.  As soon as I saw the oncologist the next day, and he told me my odds and told me my treatment plan, shock really dissolved almost instantly into, right, action stations, let’s crack on, we’ve just got to get better.  The shock didn’t last very long for me.  I think it possibly lasted a little bit longer for my partner and my family.  I transitioned very quickly into, I just need to get through this.

Joe:                 Yes, good on you, because you’re completely unprepared when it happens, right?

Rochelle:         Completely unprepared.  Also, I’ve not really been to hospital, I’ve not really ever been unwell in any significant way.  I’ve never had much involvement with the medical profession.  Part of the shock is not only, oh my goodness, I have cancer, which is surely something that happens to other people.  Part of the discomfort initially is also, and I’m being scanned and I’m in a hospital and I’ve never had a biopsy before and I’m seeing doctors that I don’t know, who are pretty much taking control of my life.  That’s comfortable and very unfamiliar.  Yes, you’re correct.

Joe:                 Yes, it sounds like it was incredibly overwhelming.  How did you transition from that moment of shock to go into, as you say, action mode?  What sort of things did you do and how did you plan your life around it?

Rochelle:         I think I transitioned from shock into action mode an enormous amount due to my character.  The fact that I am quite positive, I feel very comfortable taking control, generally speaking, in life.  That was my natural default.  I also think that I chose to completely trust my oncologist and the medical team who were advising me.  I could have decided not to, but he told me my odds, so I was 75 percent going to be fine, 25 percent not.  I was determined to be in the 75.  I didn’t start searching Google and looking online and trying to find answers.

I think I just believed.  Later on, I did start to do a bit of my own research, but pretty much trusting in the advice I was being given by my lead oncologist, allowed me to settle into, okay, I assume he knows what he’s doing.  If I just listen to what he says and get through this, then I’ll be fine.  It didn’t serve me to hold onto the panic or the distress.  I luckily avoided anger, so I know a lot of people get very angry and a lot of people have talked to me in the past about: Why me?  Why is this happening to me?  This is so unfair?  I don’t know how I avoided that, but I didn’t experience that.  I did experience that this is very difficult and uncomfortable and later on, sad.

Joe:                 Absolutely.  You mentioned trust, that’s such a key component, isn’t it?  I know that when I got diagnosed and I went to see my oncologist, the fact that this was a person that I felt I could trust, I think it was even a conscious decision for me, it really helped me to go right.  This is happening, there’s an action plan, I know what to do and I can trust this person to help me make decisions.  Was this like a conscious decision for you, as well?

Rochelle:         Yes, I think it was conscious because it’s quite unnatural to trust an unknown to the level that we are forced to, at that stage of things.  Yes, I think I did decide to trust him.  He was very clear in the way that he explained my diagnosis, my prognosis, my treatment plan.  He wasn’t amazing at accessing me, perhaps, and what mattered to me as a person or as a young mum or any of those types of things.

                        He was, in part, sensitive to it, but he was certainly very clear, and I did have my doctor father at home waiting in the wings and backing up what I had been told.  I didn’t feel like I had a choice, to be honest.  I think the most challenging thing for me at the start was that I had to hand over my life and the running of my life and the major decisions in my life to others.

That I had to follow suite unless I had a very strong reason otherwise, and I didn’t in this instance.  Yes, the early day challenge for me was once the shock wore off was the relinquishing of control and the letting go and accepting this is how it’s going to be for a period of time until hopefully life goes back to normal.

Joe:                 Absolutely.  Was there anything that helped you along the way?  Did you make notes at all?  Did you bring someone to the appointments with your specialist?

Rochelle:         Yes, someone told me right at the beginning that aside from chemo-brain making things a little bit foggy, just the emotion and the exhaustion of going through the treatment, means that it’s sometimes hard to remember or to think on the spot.  Also, because I’m not used to seeing doctors, it’s an interesting powerplay or relationship, patient/doctor.  Someone said to me, it’s really important to write your questions that you would like to ask in your next appointment, as even throughout the week.

Leading up to go and see him, just drop down the things that you’re feeling you wouldn’t mind asking him and so I went into each appointment with some written questions.  If I had nothing else to ask, at least I referred to those.  Having said that, though, he was really adamant, don’t write everything onto your list of questions if there’s something really disturbing your or uncomfortable or physically difficult.  He was also very clear that there was time in between appointments to phone in.  The doctor had also said to me, people find it very handy to write questions and bring them in, so that’s what I did actually every appointment.

Joe:                 Yes, absolutely.  I know that it really helped me because I only started doing it after some time because I realized that every time I walked out of the oncologist’s office, I realized that there were about ten things that I had forgot to ask him.  I started doing it out of necessity almost.

Rochelle:         Yes, absolutely.  I think that’s why I got the advice.  It’s only once you leave, you think, I wish I would have asked about this, that, and the other.  Yes, that’s exactly the rationale for it.

Joe:                 What about your family, your friends?  How did they react?  Did they support you in a way that you wanted to be supported?

Rochelle:         My family was unbelievable.  Steven, my partner, was incredible.  My parents were absolutely phenomenal.  They did a lot for us to help care for our two young boys.  The boys were a blessing because a lot of people say, “My goodness, cancer with two young children.” There’s never really a great time to have cancer but actually in hindsight, the wonderful thing about the boys was whenever anyone looked at me with sad eyes all the time, the boys didn’t, because they understood but only – Harry understood nothing, he was a baby.  Jack was only two and a bit.

They may have sensed that something wasn’t quite right, but they were just beautiful little boys.  They just went on being themselves and there was something really, really comforting and refreshing about the fact that in their company, I wasn’t ever needing to react to what might be going on for them.  The innocence of their little smiles and those faces was actually really wonderful.  My family was incredible.  A lot of my parent’s friends were unbelievably supportive and aunties and uncles.  My cousin and his wife were incredible.

Just coming and helping and not even asking if they were needed, just making a regular visit that was just so comforting and also, just lovely to be in their company.  Friends of my mum’s and my dad’s cooked constantly.  It was wonderful to be constantly fed.  There were a few dishes that I can’t even make in my own home now without thinking of those people who made them for me all the time.  Some of my friends were just amazing, amazingly supportive, just to be there and to listen and to talk and to send love.  Others also made food, some came and took my son and I out to play each week.

Sometimes they just came and sat by my bed when I was feeling pretty crappy from the chemo.  Interestingly, I think we’ve spoken earlier about the fact that it’s not always the people that you necessarily expect.  There were also people who out of nowhere I would never have anticipated were so phenomenally kind without any expectation of acknowledgment or gratitude, just who were there.  Just doing really kind, thoughtful, helpful, and regularly contributing.  Then there were others that we talked earlier about, also, who potentially do some of what they do for a bit of accolade.

That’s okay, too.  Different people are motivated by different things.  Yes, I felt unbelievably supported, even though a lot of the time, I kind of just wanted to go inside and just sort it out myself.  There’s a huge amount of support received but there’s an isolating experience to the cancer experience, I think, to some extent, as well.

Joe:                 I know that when I was going through this experience and when I had those people in my life who I believe just completely disappeared or just dropped off the radar.  I know that I felt incredibly angry for those chunks of time.  How did you deal with those emotions?  Did anything like that come up?

Rochelle:         Yes, I’m the daughter of a psychiatrist and psychologist, so we spend a lot of time understanding why people do the things they do.  I suppose I naturally excuse people for behaving the way that they behave.  It’s to completely understand your experience and that feeling of disappointment, almost, as much as anger.  I think the reality is some people just don’t know how to respond.  They’re not sure what the right thing to do is, they’re not coping necessarily in themselves with the fact that they might even be distressed about the fact that you’re unwell.  That sometimes causes inertia.

A lack of action.  I’m so frightened, I don’t know quite what to do, so I’m just going to freeze and do nothing.  In actual fact, it’s almost always better to say, hi, I don’t know what to do but I’m caring than it is just to do nothing.  I think that’s why some people get angry and a bit disappointed because the people who they may expect can step up, sometimes just can’t, then out of the woodwork come these others who you least expected who can just completely nail it and know exactly what the right thing to do is.

Joe:                 I also had exactly the same experience where some people are completely natural and giving you the support that you need, and it feels very natural and real and authentic.  Some people, the thing for me that was the worst after completely ignoring the whole thing, were people who would come in and say, “Just let me know how I can help.” That was, for me, infuriating, because I was like, not only you’re just putting this on me, right, because now I have to come up with a way to ask you for a favour.

Rochelle:         Yes, that’s I think what I was alluding to before.  It’s not always easy to know the way in which to offer support.  Sometimes just doing and contributing in the best way that you think you can is more of a help than expecting the cancer patient to try and work out exactly the way in which you can assist.  The funny thing on the food front for us was a woman that I’ve known my whole life did a lot of cooking for us, she’s an unbelievable cook, so it was great.  I joked with her one day, as she was visiting, I was feeling really rubbish from chemo.  I wasn’t really in the mood for seeing anyone, but I let her come in because she’s just like an aunty.

She said, “Well, tell me what’s going on, how are we on the food front?” I said, “I can’t even hear the word, let alone smell it.” She said, “Okay, let’s just make sure…” and she put the word out, she doesn’t want osso, so don’t make it.  I think it was just because it’s easy to freeze, so I got a lot of the same dishes.  It was only with her that I could joke and laugh.  The humour with which she took it on and directed traffic almost on my behalf for meals to start to be the ones that would suit my pallet, or that would not be osso bucco for a period of time.  I think, yes, I think you’re right.  I think it’s hard to do the knowing.

Maybe even asking the carers rather than the person who’s going through cancer.  Do you know what the most helpful thing I could do is?  Also, to some extent, I found it really hard watching the impact of my cancer on the people around me.  When I talk about the people who were incredibly kind and supportive, they weren’t always actually in touch with me.  Some of those people who just incredibly kind and supportive to Steven and to my mum and dad.  They needed support, too.  It was really exhausting.  There were other ways that you can help rather than feeling like you need to really access the patient.

Joe:                 It’s crazy, isn’t it, that sometimes your partner, your parents, your family, sometimes they’re more impacted by this even than you are?

Rochelle:         Yes, it’s a very hard conversation to have a lot of the time.  There were aspects of what I went through that I thought, aside from the physical symptoms of chemo, it was easier on me than it was on them.

Joe:                 Sometimes they get overlooked because they need support, as well.  Do you think they had the support that they needed to be there for you?  I guess all the focus when I was going through treatment, I guess the focus is on me and as much as I love to be the centre of attention, but at the same time, they need help as well.  Do you feel that your partner and your parents, did they have the support that they needed?

Rochelle:         I think they supported each other a lot.  I think they also had some significant others in their experience of my cancer, who they would say similar things to what I say.  There were some standout people just were supportive and kind and considerate beyond measure.  Then there were others who perhaps didn’t step up but really had not wherewithal to know what to do.

Joe:                 Yes, it becomes a whole community thing, doesn’t it?

Rochelle:         Yes.

Joe:                 Rachelle, I know that you have your own marketing business and it must have been a real challenge keeping up with all of that, when you were facing cancer.  What was it like and how did it all work out?

Rochelle:         It was lucky in a way because I had just had Harry, my second son, I was off work.  The business, because it’s my own, and because a lot of the client service was my own, the business wad wound down to just what the people who work with me could manage.  There wasn’t a huge amount that I was supposed to be involved in at the time.  It’s like I was on enforced maternity leave, really.  I took the time and I didn’t really think about work.  The impact mostly was I possibly didn’t start to build up the client base again as quickly after having Harry, as perhaps I would have.

I just gave myself a little more time to get well and recover before I decided to really get back into the full swing of work.  It’s far more complicated for a lot of other people and certainly, people that I’ve spoken to in relation to time off and loss of income and the impact of cancer can be immense for many others.  I was in that little maternity leave zone, so when the cancer treatment phase hit me, it was when I wasn’t working particularly anyway, so it was alright.

Joe:                 Yes, that’s good to hear.  Cancer is very tough to deal with mentally, as we both know, because you’re constantly in between treatments and you’re waiting for results and you’re waiting to hear from your specialist.  Did you feel you were angry and frustrated and just overwhelmed, not knowing what to do with it all?  Is there anything that helped you to be more positive?

Rochelle:         I think I’m naturally very positive.  Positive probably wasn’t such a problem for me.  I distinctly remember, though, phases almost, of my chemo, so I’m ten years all clear.  Even ten years on, I can almost remember the difference between chemo one, chemo two, chemo three.  It was definitely an experience and I don’t love using the word “journey” in this space, but it sort of was to this extent.  Without any specific training and mindfulness or meditation.  I think I went at times into almost this meditative state.  When I was feeling really knocked about by the chemo, which, as we know, that’s accumulative.

The first chemo, I was like, woo, I was still on holidays and I just had a little afternoon nap.  When I’d had my first chemo, I thought, “I am just one of those freak humans.  I’m a superstar.  This is going to be fine.” Then I had the second one and I went, ah, okay.  Then I had the third and I was smashed.  I think the reality check of it’s not as easy the third, fourth, fifth, sixth, seventh time as it is the first time.  Some of it was just lying still for long periods of time, which is super unnatural for me.  Being incapacitated, I couldn’t watch television, I couldn’t read.

I went through stages of bright lights and a lot of noise being quite uncomfortable.  Only or specific days after chemo but it meant that there was almost no stimulation that was tolerable.  Then all of the stomach and internal discomfort from poisoning.  It was digging deep into reserves of calm and resilient and patient, that this was hugely uncomfortable and physically distressing, as well as emotionally distressing.  I had to just get through it.  Upon reflection, the only explanation I can give is I did just go into this blank space, where I tried to focus away from the pain, I didn’t panic about the future and I tried not to dwell too much on exactly what was happening to me in relation to the cancer.

I just had to let time pass.  Those were possibly the most challenging days and I remember having a couple of really distinctly disturbing, almost uncomfortable – they weren’t hallucinations, I don’t quite know how to describe it, but it was where my mind and my brain was really smashed by the chemo and I wasn’t able to think, and I wasn’t comfortable in my thoughts.  I got through that and it didn’t come back again.  That was probably chemo three.  Then chemo four was alright, I had the physical discomfort, but my mind never went into that place again.  I think it was just from keeping myself calm, and a little bit distracted.

Joe:                 How did you do that in terms of your daily practice?  Would you get time for yourself to go for a walk?

Rochelle:         I tried to go for walks when I could, just gentle walks.  You know?  Can you imagine it’s like an old person all of a sudden, my body was unable to do a lot of the things that it used to do?  I’m normally very fit and active and healthy, so gentle walks.  Sometimes we got these two fold-out chairs for the garden, which seem like the simplest thing.  Steven, my partner, went and bought them.  Just sitting in one of those with a cushion and just letting a bit of sun shine on my face every so often.

We had a big tree in the back garden, we’d just sit under it.  Just being outside, having Harry play around me or just being with one of the boys.  Even if they were just pottering around or he was playing on a play mat.  Just having out with them was really rejuvenating to some extent.  I had conversation, I had people in the house.  I don’t remember being completely isolated to my home, but I also really don’t think I did much else.  I can’t remember any specific major outings.

I don’t remember socialising hugely during the time of my treatment.  It was just gentle, enjoying a bit of human contact and mostly just staying calm and quiet.  There was a lot of quiet time.  Much more quiet time than I ever have in my real life nowadays.

Joe:                 Absolutely.  Is there anything in hindsight that you would have done differently in terms of how you approached treatment?  The time for rejuvenation, having your own space?

Rochelle:         I don’t know if it would have been possible, but I wish I had journaled.  I’m not a regret person, I don’t tend to hold onto regrets, but there is a little part of me that wishes I had written during my treatment, during my cancer experience and throughout the treatment phase.  Partly because I wish I had a bit more clarity around a few things.  Part of the side-effects of being an optimist is you block out very negative experience.  There are parts of what I’ve experienced that I actually genuinely can’t access.  My protective mechanism mush has just shut that down.  I feel a little bit like I could more accurately recall certain aspects of what happened.

Also, I think I feel like there would be value in the sharing of it.  I suppose I could just sit down and write upon reflection, which is challenging because it takes me back there and there are days now where I’d rather not have to go dig deep back into what that was all like.  Also, I think it’s a bit clouded by being ten years out the other side.  It’s possibly not as accurate as it would have been.  I wish I would have journaled but I’m not sure what else I really could have done differently.  I think I celebrated the milestones reasonably well.

I made my oncologist sign a five-year all-clear certificate that I made for myself, which he thought was hilarious and I only got him to do it because I swore that I’d never use it against him in a court of law.  I took chocolates back to the oncology ward for all of the chemo nurses.

Joe:                 Yes, we did the same.

Rochelle:         Yes, they were like angles descended from another planet.

Joe:                 Yes, absolutely.

Rochelle:         That was really weird because I was busting to go in and my Wednesday was my treatment day, so I knew that most of the ones who I had seen, if I came two Wednesdays in a row would largely be there based on their shifts.  Having to go back there two Wednesdays after, I didn’t need to be there anymore, was hell.  I went back and took them chocolates.  I think I loved that I did that still.  It was a really funny and fun half an hour.  I think, no, I managed myself as well as I could have.  I think I showed appreciation for the people who loved me and who I cared about and who cared about me as much as I hopefully could have.

I think I still maintained contact with my boys, even when I was feeling rubbish.  I have a little tiny part of me where I look at photos of Harry, particularly, because Jack was already two, but I look at Harry in those few months when I know my treatment was taking place.  There’s just this vague sense of, did I miss out a little bit on that tiny patch of his life?  I don’t dwell on it too much because he’s such a cool kid and we’ve got such a good relationship, it’s fine.  I can’t imagine what else I could have one.  There’s a little part of me that does wish that I’d written that down.

Joe:                 One of the things that helped me was for my first cycle of chemo in hospital, I was put into the same room, which is by pure luck, well not pure luck, this was really intervention by the amazing nurses that we had.  Where I was put in with a guy who went through basically the same thing as I did, and he was on his last cycle.  Which was really cool because he was able to guide me through, give me some tips about managing your energy and what to expect.  He was an incident because I actually went to school with him, and that was bizarre.  It was pretty amazing.  It was something that really helped me.  Did you come across someone along your cancer adventure that went through a similar experience and was able to share that with you?

Rochelle:         I just have to pick up on the fact that you just said cancer adventure.  Maybe that’s the word instead of journey we all need to start using.  I’m not sure it would go down well with everybody.

Joe:                 Like you, I hate the word journey.

Rochelle:         Yes, it’s interesting.  People come out of the wood work.  I was contacted by someone who was my parent’s generation who had had Hodgkin’s Lymphoma and she just phoned me out of the blue and said, “I’d heard, and I just want to tell you that I went through it.” She was absolutely lovely.  The interesting thing, I suppose, was she focused quite a lot of what she wanted to tell me on sourcing a good wig for when I lost my hair.  It was interesting because she was lovely and genuinely offering some support, but I couldn’t have cared less about – I have big, long brown curls, so I wasn’t like imaging ever having to go bald.

It wasn’t even on my radar.  I couldn’t have cared less.  I thought, I’m sick, and I’ve got cancer, and I need to get better.  I’ll put a head scarf on.  I don’t know, it hadn’t occurred to me.  It was strange in the first instance get help from someone who had had exactly my cancer, who was focusing on an issue that was exactly not my issue.  The flipside of that was when I had finished my treatment, I heard about this service that the Cancer Council offers, called Cancer Connect.

That provides specifically the opportunity for people who phone into the Cancer Council to talk to someone who has had a similar cancer diagnosis or experience, or treatment, or is in a similar life stage.  I think I would have loved something like that when I was going through it.  Just to normalise to some extent what’s going on, to talk to someone else who has had what I have.  I didn’t find out about that until after I was better.

Joe:                 Probably like most people.  Is that why you got involved with it?

Rochelle:         Yes, I found out about it because I picked up a brochure when I was actually waiting to see my oncologist.  I was reading it thinking, “This is brilliant and actually, why didn’t I know?” With my marketing hat on, why the hell didn’t I know and how come this isn’t better promoted to me.  Instantly, jotting down all the ways in which this message could have gotten out to me throughout my treatment.  Then I contacted the cancer counsel to say, “I had never heard about this and these are all the ways in which the message could have gotten to me, and how do I apply?”

They listened to me, gave me a little bit of information and then said, “Rochelle, it’s wonderful that you want to volunteer, and you sound like just the right type of person.  However, sweetheart, you’ve just finished your chemo.” They basically wouldn’t accept anyone into the program until 18 months after their last treatment.  Which, at the time, I thought was absurd.

Joe:                 Why do you have to wait?

Rochelle:         Upon reflection, it’s genius because there’s no way you’re in a position straight after you’ve finished treatment to start supporting others.  There’s a little way to go, I think.  There’s quite a lot that went on for me and for most people.  Once the treatment finishes, then you start to get back into rebuilding your life after cancer, you probably need a little bit of time to focus on yourself and to get that sorted before you start to open your mind and your heart, and your listening capacity to hear others talk about their experience.

Joe:                 Yes, it’s interesting that you mention that.  Before we get back to Cancer Connect, in terms of this whole process of putting yourself back together and because this experience changes you, did you feel that you started to look at life in a different way, and also maybe reassess your life before cancer?

Rochelle:         Yes, gosh, how long do we have?  I’ll try and pick the key points.  I often describe it as if you’re looking at life through a magnifying glass, and everything that’s really important just gets extra sharp and crystal clear and huge.  Everything that’s not important doesn’t actually make it into the picture.  I don’t think I changed what I thought was important, I think I just sharpened my focus on it and recognized that there was a whole lot of other stuff that didn’t warrant my attention.  I think that was certainly the result of cancer.  I also think it could be the result of moving into middle age.

Sometimes I’m like, “Was it my cancer or was it just the fact that I’m older?” I think it’s both and I think it’s definitely partly the cancer.  I think initially I was on an unbelievable high.  Every week away from chemo was a week of awesome.  As I rebuilt my health, because you accumulatively grow stronger and more well in the same way that you accumulatively get more ill from the chemo.  The more I moved aware from chemo treatments, the more I started to exercise and be active and get back into my normal life.

At six months, I thought I’m flying, but actually at twelve months, I looked back and went, gosh, at six months you were still barely putting the pieces back together.  I think I started on a real high and then it was only probably four or five months’ later that the actual reality of what had happened hit me.  I actually think that is the first time.  I think it hit me then significantly harder than when I first even found out I was sick.

Joe:                 The magnitude of it all?

Rochelle:         I think the fact that it happened to me and that I wasn’t looking from above down on myself, thinking, “You’ve just got to get through this, head down, Rach, you can do this, go, go, go”, but more looking down on myself and thinking, “Well, that happened to you, that was really sad and really intense and really challenging.  You did good, girl.” I think the magnitude and the sadness still hits me now, even just telling you.  That was the real turning point.  Then also acceptance and just letting myself feel really sad and really just stressed for the first time about what had happened.

Feeling proud of how I’d managed it and grateful that I was lucky enough to be here.  Still, I feel more the sadness and just stressing factors really kicked in.  Probably because I was safely on the other side.  I think when you’re in the middle of the treatment, there’s not time or energy that can be spent addressing some of those emotional stuff.  It’s really just hold yourself together physically because it’s physically very debilitating.  Once I was out the other side, it was like, good, you’re well now, you’re safe.

Now… let’s lose it emotionally a little bit about what was going on.  That, to some extent, hit me.  Interestingly, that was also a turning point for being able to look forward.  Straight after I got well, Steven, my other half, was very much, “Right, let’s plan holidays, what can we do next and what’s our future entailing?  Let’s do some five-year visioning.” Really wanted to look to the future.  I absolutely couldn’t.  I didn’t know I couldn’t until he pointed it out to me one day when we were having a conversation.  I was like, of course I can, I love planning for the future.  Then, I realized, no, he’s absolutely right.  I just could appreciate the here and now and get excited about tomorrow.  Planning past that, it was actually just too stressful.

I’m not that easily stressed and I’m not naturally anxious, I don’t anticipate the worst.  I just wanted to just stay right here, right now.  Then at that four or five-month point, when I really got upset, I suppose, about what had happened.  I dealt with it and then that triggered this capacity to all of a sudden, plan for the future again and get excited about the longer-term.  Yes, they were probably the two things that changed the most.  It was the sharpening of the focus of what’s important and then the flip, finally, of being able to plan again for the future.

Joe:                 Yes, because all of a sudden you realized that every day is a gift, right, and then naturally, as you mentioned, all of your priorities automatically shift and everything that’s not needed just falls by the wayside, doesn’t it?

Rochelle:         Yes.

Joe:                 Was that the moment where you felt, now, I have the capacity to help others, to be part of Cancer Connect?  How was that experience like?  Was it emotionally rewarding?  Was it draining at the same time?  Would you recommend it to others?

Rochelle:         I thought I could join Cancer Connect like three days after my chemo finished, I think, as I mentioned.  They made me wait, which was great.  I think I felt like it was something that I would have appreciated whilst I was going through it and therefore, I should get involved because how could I not want to help others in the same circumstance.  I probably went into it with a very much giving hat on.  What I didn’t necessarily anticipate was how much I would receive from getting involved.  The training, itself, was really incredible.

Partly, because it’s very good training and you do a lot of role playing and there’s a lot of active listening skills and just various protocols and guidelines to do with the actual program.  Also, a lot of just interesting interpersonal skills about peer-support over a phone and what helps and what doesn’t help.  I really enjoyed that in terms of the learning.  More than anything, I really enjoyed being in a room full of people in the club.  Which was really phenomenal and that was the bit I probably hadn’t anticipated.

I think I mentioned to you earlier, even telling those totally inappropriate cancer jokes in a room full of cancer people.  Well, we laughed at things together but then almost simultaneously crying, but you couldn’t’ do that with anyone else.  It absolutely is one of those things, if you haven’t been through you, I can’t really explain it.  Some of it was also that reality of the value of Cancer Connect was in that training, when you’re talking about the third day after your second chemo.  The people opposite you were going, “Yes.” You haven’t explained it yet, but you don’t have to because they know exactly what you’re talking about.

It’s that capacity to talk in shorthand about an experience that was monumental, that would take a lot of explaining to someone else.  It’s quite normalising and reassuring.  Just the characters.  There were lots of wonderful characters in the room.  People were all there for a similar reason.  That attracts a certain type of person, I suppose.  That was really enjoyable.  Just to hear from other people about their experiences, where some of them were so similar to mine, it was like holding a mirror up.  Others were so extraordinarily different, that it was fascinating that we’d been through the same thing, but with a completely different set of circumstances or outcomes.

Joe:                 When you were talking to the people on the phone, people who were going through that, what did people want to talk about?  Were there any topics that seem to come up all the time?

Rochelle:         I often see that someone’s cancer experience is as different and unique as their life experience.  There’s not really two people who you can categorically say, “It’s just the same.” There are certainly some themes that come up.  A lot of the time, it’s just letting them talk about things like fear, confusion, a need for reassurance, anger, questioning, why did this happen to me?  What am I supposed to do now?  How the hell am I going to get through this?  How am I going to rebuild my life afterwards?

Sometimes it’s whatever was going on before the cancer experience comes into the cancer experience, and it hasn’t gone away.  My really annoying mother-in-law is driving me mad.  Okay, but did she drive you mad before?  Yes.  Well, she’s still going to drive you mad now.  Sometimes it’s really specific questions about the treatment.  People want some reassurance around what side-effects did you have?  Can you tell me what happened to you?  I’m not there yet, but I just want to hear from someone who’s been through it.  Largely, it’s listening.

I think sometimes just giving them the opportunity to talk about what they’re going through and really listening and just responding with some genuine, “I hear you.  I know.  Oh my goodness.” It’s just enough to normalise what they’re going through and to make them feel like somebody who’s been through it knows what they’re talking about.  You can’t always anticipate what people will ring in about.  Yes, there are some things that feel familiar and you feel equipped as a peer, rather than a professional to provide support on.

Joe:                 It’s interesting that you say that.  I’m usually the type of person that if friends tell me about stuff, I’m usually the person that hits them with advice.  Maybe you should do this and do that.  It’s interesting, when I was in hospital for chemo and there was an old friend, we don’t really see each other all that much, but she showed up.  She just listened to me for an hour.  I was just bitching about stuff, I was just going off.  I realized that the tremendous uplifting experience to just being listened to.  Listened to in a proper way, where someone is just there, just present, not really giving you advice or telling you what to do, just listening.

Rochelle:         Yes, absolutely.  A lot of what you learn from the Cancer Connect training is less is more, actually, when you’re providing peer support.  Two ears, one mouth, use them in that proportion.  Even more so, really just listen and give them an opportunity to speak and to share in an environment that they feel is safe and supportive.  There are times in the Cancer Connect call, where they ask specifically, tell me about what happened to you, I want to hear you experience.  What did you feel when you went to chemo?  How did you cope when your oncologist wasn’t answering your questions like you wanted him to, or her to?

There are times when they specifically are seeking your story and I found interestingly at the start, how much should I share?  I’m out the other side, so she’s only in her first treatment, do I tell her how bad it is by the time she gets to the fifth?  Sometimes there is a sensitivity around if they are asking you direct questions, what’s appropriate in this circumstance to share?  I shall never lie but maybe in the second or third call, I’ll tell you about some of the more challenging symptoms that you’re not necessarily feeling now.  It needs to be support and care and honesty.

At the same time, you’re not trying to scare the crap out of them.  There is a huge responsibility to listen and to be honest when direct questions are asked.  I certainly followed the approach of listen far more than I speak, in terms of providing support.

Joe:                 I think it’s so amazing that you were doing it and you’re doing that now, because so many folks just need it because they, for one reason or another, do not have the support that they need when they’re going through it.

Rochelle:         True.  Well, thank you.  It is good.  You can hear how much I talk.  Imagine me trying to listen.

Joe:                 It must be tough.

Rochelle:         I’m also quite a good listener.  One of the interesting things that they do with the training is, you have two training sessions at the start and then you have a one-month break and then you do the third session.  It’s a very clever design because some people decide it’s just not for them.  They won’t come to the third session because either they don’t enjoy the experience, or they realize the commitment is not something that they’re prepared to give.  Also, for some, it just brings up too much of their own difficult memories and they might not be ready.  A lot of the early training is also about deciding in yourself if you’re ready to be in a place where you can offer support to others.

Joe:                 Yes, that’s fantastic.  Roch, if you had a minute with someone who just recently got diagnosed with cancer, what would you tell them?

Rochelle:         I probably would ask them how they’re feeling.  I don’t know if I’d tell them much at all.  I think I’d ask them, yes, do they want to talk about it?  I’d tell them that I’m available if they do want to talk about it.  If not now, then at any time that they feel the need.  If I had to tell them something, I would probably just tell them that it’s really difficult and whatever they’re feeling is okay.

Joe:                 Yes, that makes sense, Roch.  I know we spoke about it earlier, as we met at the survivorship event earlier, I saw you’ve obviously been speaking to a lot of specialists and research after that.  In your opinion, did that change that perspective in terms of interacting with someone, someone like you, someone who’s went through this real-life experience?  Is it a missing link for a lot of folks out there that are doing research, that are specialists in the area to be involved with someone who went through cancer?

Rochelle:         When I was asked to speak at the conference for the benefit of those listening to us.  Obviously, a conference where there were a lot of specialists talking and a lot of research presented, and some keynote speakers flown in from all over the world.  I asked about the validity of why on earth I would stand up and tell my story, especially as I was a hodgy with a great story and a good outcome, and here I am.  They’ve must have heard much more horrific things than what I had to share.  I was actually told by one of the keynote speakers, who I had the privilege of talking to before the event, and he said, “Rachelle, it’s vital that you stand up at the conference and tell us your story, because otherwise we are going to get lost in statistics and statistical significance and the probably of and likelihood of.

We might forget to address the whole person and we might forget to come together around the fact that there are people lives with individual stories that we are actually addressing on a daily basis.” I think it’s sort of like a reality check to have a survivor speak at a conference like that.  The warmth with which they responded was phenomenal.  Extraordinarily phenomenal for me.  I also think to some extent, there is a really important requirement in this space for advocacy on behalf of the patient and on behalf of the survivors.  There are so many more cancer survivors now, luckily, because the medical profession is allowing so many more of us to live.

In some respects, I think it’s important and I know now having done it, the importance of having our stories told, having them shared amongst the profession and not just as survivors with one another, to give us a voice about what matters to us and what happens to us, and what it feels like to be on the receiving end of oncology care or haematology care or even in clinical research trials and all those other things.  I think it’s important that there is a voice for the patient and the survivor.

Joe:                 Yes, that’s fantastic.  That is absolutely the voice that needs to be heard out there.  Thank you so much, Roch.

Rochelle:         Pleasure.  Thanks for having me.

In this episode, I’m talking to Suzanne Chambers who has a fantastic book that helps men deal with prostate cancer. Filled with tremendous insights and practical advice, this book should be prescribed like medicine.  In this interview, Suzanne shares:

Facing the Tiger: A Guide for Men with Prostate Cancer and the People Who Love Them

Suzanne Chambers Academic Profile

Joe:                 Hello, my friends.  This is Joe Bakhmoutski and welcome to Simplify Cancer Podcast.  Today, I’m talking to Suzanne Chambers.  Suzanne is a psychologist who has been helping folks with cancer for many years.  She took all that knowledge and all of that experience and put it into a fantastic book called: Facing the Tiger.  That is specifically aimed at men dealing with prostate cancer, but most of the insights shared in this book is universal.  Suzanne is practical, down to earth, and profound.  I promise you’re going to love it.  Suzanne, I know you’ve done so much more than writing this book, but please tell about yourself, about who you are, what you do and what you’re passionate about?

Suzanne:         Sure.  My background is that I’m both a registered nurse and a registered psychologist.  I’ve done many things in my professional history.  I started out as a registered nurse in intensive care.  That was a very dramatic profession.  Then I ended up working for the Cancer Council in Queensland, working with people with cancer in the community and developing community-based support services.  It was really a journey of learning for me that started there.

This was back in 1989 I started working with people with prostate cancer.  My best teachers were the ones who had had cancer themselves, who were very generous with sharing their stories with me.  How I got into it, was I would go away and learn what the professions and what the research had to say, come to some conclusions about what might help people, and then I would bring it back to my community of people who had experienced cancer, and share that with them.  I’d say, “What makes sense to you out of this and how would you use this information?”

It was a really collaborative process that developed my way of thinking from all of those years ago.  Obviously, that’s a couple of decades ago, that informed how I think about coping with cancer and what I say to people with cancer when I’m trying to give assistance to them.

Joe:                 That’s fantastic, Suzanne, that you talk about it as a learning experience.  When you looked at the research and you tried to bring it into practice and get feedback from real-life people, did you find that in terms of the research out, did it align with how people tried to deal with it in real-life, so to speak?

Suzanne:         I think it did.  The way that I look at research is, having cancer is really confusing for most people because it’s a shocking experience for most of us.  Trying to make sense of it is really hard because you’re stressed and your anxious.  The point of psychological research in this area, I always say, is to help us with a map.  To help us go, ah-ha, that’s why I feel this way, that’s what this means, that’s what driving that, therefore, some ideas for how I can help myself might be this.

From my point of view, if anyone is doing psychological-type research with people with cancer, they have to be very focused on being creative in finding solutions for people to help them in a difficult circumstance, manage the best they can.  Most people are doing the best they can, most people do well but sometimes you can get overwhelmed.  That’s when having somebody who’s used to putting a bit more of an analytical brain on it can give you tips that you can try out and experiment with, to see how you go and be open to that.

Joe:                 Yes, absolutely.  It kind of sounds like your approach is you’re essentially guiding people to find solutions themselves, is that right?

Suzanne:         Absolutely.  Well, I don’t know about you, but the last thing, mostly I need, is someone bossing me about.  I do think people can be their own best friend, have to draw on their own inner resources and no one knows you as good as yourself.  If you can have someone be a good sounding board for you, which can be a good friend, or it might be a health professional or a volunteer, who helps you understand yourself a bit better, find within yourself your own solutions.  People are more likely to stick to their own solutions.  That’s the fact of it, we know ourselves, we know what we like.  If someone can help us find what our strengths are, what our best coping resources are, I think that’s a great way to go.

Joe:                 Yes, that’s incredible, Suzanne.  How would you suggest people go about doing that, perhaps on their own, or with their friends?  How would you go about tapping into your own resources and finding solutions that are unique to you?

Suzanne:         I think there is some knowledge people can gain by getting information.  There is so much information available for people with cancer.  If they’re in Australia, they can ring the cancer counsels.  There’s a 13-11-20 toll-free number that people can phone.  There’s so much online that you can look up, as well.  The framework that I have learned from people with cancer, again, that I’ve worked with, that seems to be most helpful, is the stress and coping framework.  What that means is, when cancer happens to you, it’s a major life stress.  In some ways, it’s not that different to being in a car accident or having something really difficult happen to you, where suddenly you feel threatened and the world seems different and you’re not sure what to do.

In the book, I discussed this, you will react in a way as if a tiger has just walked in front of you.  You’ll have the fight or fight response.  It’s hormonally driven and we’re built that way.  We’re built that way to help us survive.  A lot of our reactions to things are instinctive.  If you understand that and you can understand why your body is acting that way, then that gives you some tips about specific strategies that you can use that might be more helpful to you.  I use an analogy where I say, your approaches to coping are your toolbox and you need more than one tool to fix a car, usually, you might need one tool for yourself.  People have a tendency, we all do this, to have a particular way that we deal with difficulties.  Some of us like to chat a lot, some of us get emotional and express our emotions, some of us like to hide away.

Nothing wrong with any of that, unless it’s not working for you or you’re overusing one strategy.  The real tips are to be flexible, to be prepared to think creatively and laterally about how you might cope with the situation.  To seek information so that you’re well-informed.  To be your own best friend in that sense.  To not be self-critical about how you’re doing.  In any difficult situation, we’re all doing our best.  We’re all trying hard.  We just might need a little extra help sometimes.

Joe:                 That makes so much sense, Suzanne.  One of the things that’s really helped me was going on and learning as much as I could about my cancer, learning about all the different paths it can go, learning all about treatment.  Become an expert in it, if you will.  That gave me a lot of confidence to, first of all, feel comfortable about what’s happening.  Secondly, to ask informed questions when I was seeing a specialist.  Do you find that is a good way to go about, as well?

Suzanne:         Absolutely.  I love the words you used because you are the expert in your own illness.  You have to really trust your own instincts on that.  I see so often people that I’m working with cancer who just know so much about their illness because they get informed.  It really helps.  It’s good if you can try and get informed before you talk to the doctor, if that’s possible.  It makes it more likely that you’re going to really understand what he’s talking about or what she is talking about and be able to ask informed questions.  There are lots of strategies that people will suggest, like write down questions before you go, take a buddy with you before you go to the doctor, so that you’ve got an extra pair of ears.

I think all of those things are helpful.  Workout with the doctor.  When I need an extra question answered, who do I call for that?  Setting yourself up so that you get home and you go, “I should have asked this, I really need to know that” and know how you’re going to get that piece of information.  Again, as I said earlier, there are lots of services around now.  Much more so than when I first started working in cancer in the late 80s.  There was really nothing around then.  In fact, back in those early years, we started running a group educational programs over a six-week period, where we would get health professionals to come in and deliver talks for people.  We would have hundreds of people turning up, the room would fill out.

There was not much online, there was not much on paper, there wasn’t a helpline, not really, back then.  Now, there are lots of places people can go.  There are people like yourself.  Good to know what’s out there, be a canny consumer, as well, though.  There are people out there suggesting things that are probably not helpful, so you’ve got to think, what’s the evidence for this?  What’s the likelihood that that really would be helpful.  You’ve got to be a bit discerning.  Again, that’s where often your doctor or a good friend can play a role in saying if that really is a sensible ideal or not.

Joe:                 Yes, absolutely.  Do you see this dubious advice out there?  If so, in what areas, how do you separate the truth from something that simply isn’t true?

Suzanne:         If it sounds too good to be true, it’s probably not true.  That’s what I think when I go to buy a cosmetic, is that really going to make me look ten years’ younger?  Not likely.  That’s not likely.  That’s a very girly example but that’s probably not going to be true.  Is that really going to make me lose five kilos in the next week?  Probably not.  It sounds too good to be true, probably not true.  Go to reputable websites, so Cancer Counsel Australia website, there’s the National Cancer Initiative in the U.S.  Good websites.  The back of my book has a list for prostate cancer and reputable websites.  Just put your sceptic hat on.  The same goes for a whole range of things.  As a person with cancer, the same as anyone else, your money is an important resource for you and so is your time.  You want to make sure you’re investing your time and your resources into something.  You want some good evidence that it’s going to be helpful.

Joe:                 Absolutely.  Suzanne, I know that you spent a huge amount of time, obviously, working with prostate cancer patients and survivors.  What are some of the unique challenges for folks with prostate cancer and what are some of the things that we have in common universally, everyone who’s facing cancer in one shape or form?

Suzanne:         Cancer is a really stressful event for anyone, regardless of what cancer it is, really.  No one wants to hear that word come out of their doctor.  It’s distressing and regardless of the types of cancer you worry about, what does this mean for my future?  What does this mean for my survival?  How is this going to change my relationships?  How is it going to change my ability to work, my ability to play?  All of these things will go through a person’s mind.  The world is changed from a diagnosis of cancer.  Everybody’s world is changed from a diagnosis of cancer.

Some of the ways in which it changes will be the same in the sense that the world can somehow not seem like the safe place that it seemed before.  I think we all act as if nothing bad is ever really going to happen to us, and we’re not going to get cancer.  There’s nothing wrong with that.  That’s a normal unrealistic optimism, but the reality is, cancer is really common.  If we don’t get cancer, someone in our family is likely to get cancer.  For anyone, it’s a shock when that happens.  If you then start looking at what things make it harder or not so hard, it’s harder on you if you get cancer when you’re young because you’re less established in life, you less expect to get cancer when you’re young.

If you’ve got dependent children, it’s tougher because you’ve got all of those financial responsibilities.  If you’re in a new relationship, it’s tougher.  If you don’t have a lot of resources, if you’re perhaps in a stage of life where you’re struggling a little bit financially or in other ways, the added weight of cancer is extra hard.  Having said that, regardless of your place in life, getting a cancer diagnosis is awful.  Even when you’re older, you don’t expect to see that coming around the corner, for most people.  Where it differentiates more about the cancer itself is if your cancer has been picked up very early.  Obviously, it’s easier to be optimistic about that than if your cancer was picked up at a late stage, even though there are wonderful treatments for advanced cancer now, as well.  Then the types of side-effects that you’ll experience and how it’s going to change your physical life, obviously, that’s going to be really dictated by where is your cancer and what sort of treatments do you have?

Are you having radiation therapy?  Are you have chemotherapy or hormone therapy?  Each of those things will have particular side-effects that a person will have to cope with.  They vary by cancer type.  In prostate cancer, things that worry men are things like urinary incontinence, although, it’s much less common these days, problems with erections and sexual life.  If men have more advanced disease and they’re put on a hormone blocking therapy, then that causes problems with muscles and muscle wastage and a range of other things.  Of course, for every cancer it’s different.

For some cancers like lung cancer, a particular issue that people with lung cancer and their carers face is stigma.  We think of cancer as not stigmatized anymore, but some cancers are.  People with lung cancer often feel like folks think they deserve it because perhaps they smoked, or even if they didn’t smoke, people assume they did.  Some cancers are hard to talk about because they’re so personal, so bowel cancer can be hard to talk about and that makes it a bit tougher.  There are all sorts of unique things that people might struggle with.  Although, the core issue is, being diagnosed with something that’s potentially life-threatening.

Joe:                 That is so true, Suzanne.  Cancer diagnosis also changes your self-image, the way you see yourself.  Do you think that’s true?

Suzanne:         I think so.  It probably varies amongst individuals.  I know when I talk to some people they say, “I feel like a stronger person than I was before.  I feel empowered in different ways because of what I’ve had to learn.” Other people don’t feel that.  They feel that this has left me in not such a good way, that I’ve learned to manage that.  Then some people will say, I’m just the same person that I always was.  It’s a pretty personal thing.  Perhaps we can think about this more broadly.  That in life, there are many difficult things that can befall us.  We can lose a loved-one, we could lose our job.  We might end up in jail, god forbid.  Difficult things happen to people.

We might get divorced, we might lose a baby, all sorts of things might happen.  When these things happen to us, I guess I think that they leave us with a mark that we have to learn to adjust to and that can be really tough to learn to come to terms with that and come to terms with, do I feel different?  In what way?  How do I create my new self?  People talk sometimes about; do you create a new self, or do you become the same person.  I think it’s a personal journey.  We all do that differently.  Most of us strive to try and find a meaning and learning something and put ourselves back together and then we get on.  That’s the nature of humanity, isn’t it?  Humanist of us all, we’re all out there struggling with different things.  Sometimes that thing we’re struggling with is cancer.

Joe:                 Absolutely, Suzanne.  That’s why I love your analogy of cancer because it makes this experience feel real, it makes you go through this physical fear, instead an anxious.  As you said, this way is very natural.  Having this range of emotions is really not helpful to you when it comes to trying to deal with this.  Could you talk about why that is and what are some of the key skills and strategies that someone can use to deal with cancer in a better way?

Suzanne:         Sure thing.  The analogy of cancer is a title I got from a urologist that I work with, who used to say to me, “Some prostate cancers are pussy cats because they’re very low-grade and they’re not ever going to do much, and some are tigers.” They used to say to me, “We want to catch the tigers.” That stuck in my mind about that.  I thought, you know, it is like a tiger in many ways because it’s that physical threat.  The things to remember are there are two broad categories.  Well, the broad categories of coping with a major life stress and with cancer.  One of them is what we call emotion-focused coping.  That’s trying to deal with the sadness or the anxieties.

That could be crying, talking and talking, running, trying to physically get that sense out of us.  More of the stuff that we do that’s aimed at trying to relieve that feeling of sadness and tension.  Then there is problem-focused coping.  Which is coping where we go, right, I’m going to get the information, I’m going to understand this and I’m going to find out what I’m going to do and I’m going to apply a plan.  Both are important, and you need a balance of both together.  The third type of coping that has been incorporated into this model is meaning-focused coping.

That’s where we go, “I’ve got to find a way in my head to understand how I can fit this within my life story in a way that feels okay for me.  It doesn’t mean I have to say it was a good thing, I’m glad I had cancer.” Really, that’s not the goal because, of course, you don’t want to have cancer, but it’s trying to set it in a sense of coherence of your life, in a sense.  What I say to people, these are all the different ways that you can cope, and you’ll have your own preferences for coping.  For some people, crying and talking to friends might be so not on their list of things to do, they don’t want to do that.  That’s okay, what else can you do to get that emotion out.  It might be that you might go for a walk-in nature, or you might watch a movie or distract yourself.  A whole range of things.  You might learn stress management techniques and try those.

I worked, many years ago, I worked on a program where I was doing therapy with women with genealogical cancer and their husbands.  Part of my bag of tricks, so to speak, was to teach people deep breathing and relaxation exercises as a way, as a motion-focused coping to try and reduce those feelings of stress.  As my first lesson about what blokes don’t generally like to do.  Often, the chaps would say, there is no way I’m going to do progressive relaxation, but what I will do is, I’ll go out and hose the garden and then be quiet for a while.  Finding different ways of distraction, of getting some peace, of trying to manage those emotions.

While at the same time, knowing that getting information and making a plan and making informed decisions can be helpful, as well.  The key, again, is the flexibility, if you have one way of coping and that’s all you do, that’s probably not going to be that helpful in the sense.  My example there is, if you’re in the doctor’s office and he’s trying to do an unpleasant procedure to you, like take blood or something like that, closing your eyes and imagining you’re in Bali or somewhere else and fantasizing about something else is probably a good way to dissociate from the unpleasantness of someone sticking a needle into you.

If you’re in the kitchen and a family member comes in and wants to talk about the cancer, closing your eyes and imagining yourself in Bali is not going to be helpful.

Joe:                 That’s not going to work.

Suzanne:         Well, it’ll get an outcome that might not be pleasant.  Try different things, be a bit playful sometimes.  Give yourself a break.  People are so judgmental about their own reactions and they’re thinking, “I should be stronger than this.  I shouldn’t be upset.” Well, stop doing that to yourself.  It’s okay to get upset sometimes.  You are doing the best you can, so don’t judge yourself, be kind and compassionate to yourself and be your own best friend.

Joe:                 That is so true.  I guess we put so much pressure on ourselves to be this way or that.  You mentioned the third way, which is that way of coping, which is when you’re incorporating your cancer as part of how you see yourself, not necessarily in a way that you’re saying, it’s so great that it’s happened.  Could you talk about that a little bit?  Is there a way to incorporate that into your daily life?

Suzanne:         I think it’s one of those things where psychologists have a fancy name for everything, so that you all think that we’re clever, cognitive processing.  The idea that when you have an experience at some level in your mind, you’re working it through in your head.  I’m sure many people will recognize this experience, where they’ve had something they can’t figure out the answer to and they go for a long walk and suddenly without any current stimuli, the answer pops into your head because at some level you’ve been processing it and working it out.  I think coming to the point where you’ve made some meaning out of this experience is a matter of cognitive processing.

Things that help processing are allowing yourself to be sad, not insisting that you be upbeat all the time, giving yourself permission to be sad.  Talking it through every now and again.  You don’t have to talk about it all the time, but talking it through every now and again, you’ll come to that point eventually.  I know I had a very difficult experience for me last year when my mother was diagnosed with cancer, she had a very advanced oesophageal cancer, so she only lived for six months, because I was so busy looking after her for the six months, I couldn’t let myself process it because I would have had too much to do, to look after her and make things the best that I could.

Then I think it took me a good six months after that until I finally had worked it through enough in my head to where I didn’t feel angry anymore and I could talk about it in a reasonable way.  I think I had come to a sense of peace about that.  the time-frame for coming to a sense of peace about what’s happened varies, but it’s important, we want to get to a sense of peace, we don’t want to have this chip on our shoulder or this monkey on our back forever.  I don’t have a recipe for that, other than allowing yourself to think, allowing yourself to be sad.

Sometimes people find it helps to write stuff down, picking your mark for when you walk to talk it through with someone, test out ideas about what you think this is and allowing it to change.  I know people I know who early on for the first few years after their cancer felt very tied up in their cancer identity and really saw this as who I am, I’m a cancer survivor and I’m going to have a very high profile doing this.  Then after five years or ten years or whatever or one year, they decided, I’m done with that now and I’m moving onto a different primary identity.  No rules for what’s right and wrong, just finding your path.

Joe:                 Yes, I’m sorry to hear about your mum, Suzanne.

Suzanne:         Thank you.

Joe:                 I know in the book, I think you talk in a very profound way about making decisions under stress, how does it work and what can someone do to make better decisions when they’re facing cancer?

Suzanne:         One of the ways that I describe it in the book is that if you think of your brain as your cognitive, cognitive just means thinking, your thinking work space, it’s where you toss ideas around and you weigh them up.  When you’re anxious, when you’re very anxious, your cognitive works space or your thinking space becomes a bit more cluttered.  It’s harder to find things and it’s harder to move them around.  You’re more prone to making a decision that you might later regret, just because it’s hard to think it through.  Understanding that just means that you’re in an emotionally charged situation, like you’ve just been told that you’ve got cancer, most of the time, there’s no need to make an immediate decision.

Remember that you’re in shock, that you’re trying to come – how has this happened, what does it mean to me?  There might be some circumstances where an immediate decision is needed but that’s not often the case.  Sometimes the best decision is, I’m not going to make a decision until I’ve had a chance to just settle down a little bit, talk to some friends, read some stuff, maybe get a second opinion and take some time with it.  You can go through some structured process of writing down the pros and the cons, it sounds really boring and mechanistic.

I know, I had a friend whose partner was diagnosed with breast cancer and they were making a decision about chemotherapy and I said to her, “This is going to sound really boring but I want you to go to remember the choices you’ve been given and I want you to do the list of the pros and the cons and I want you to circle with red the things that you really want to avoid and then see how it looks.”

These were very intelligent people, who looked at me a bit funny and went, okay, then later said, “Do you know what?  That actually really, really helped because the process of writing that down and really weighing it up, it suddenly became really clear to us what decisions we needed to make.” That’s a pretty straightforward process.  These days, I was pretty interested to read the other day, it’s got a fancy name, they even call it design thinking.  It’s true, it’s about being open to different solutions, thinking laterally, getting all of the information, then weighing up the pros and the cons.  Then your decision will emerge.

Joe:                 That is so true.  It’s good to hear that I have intuitively figured out design thinking when I was going through treatment.  I actually wrote down these options on a piece of paper and I weighed it up with all the percentages of the likelihood.  I have to say, it really helped me because it put things into perspective, I go, so when I look at it like that on a piece of paper, it actually makes it real.

Suzanne:         Yes, it’s a good process to do for anything, really.  If you’re going to make a hard decision, writing down the pros and cons of each possible option.  The trick is, too, to be really creative of the outset.  Don’t restrict yourself, brainstorm any possible solution.  There’s a step before that actually, I should say, is getting clear about what the problem really is.  Sometimes, you can think it’s all about choosing treatment but there may be something before that that’s bothering you.  Getting really clear about first of all, what is the problem, now, what are all the possible solutions to that, what would be the pros and cons of each, then highlight and put to yourself which one’s matter to you most.

Values come into it, we’re not computers, our brains are not computers, people rarely make a decision based just on the data.  We’ll have personal preferences for things.  Some people will say, I’ve had men say to me, “I don’t care, I’m just never having radiation therapy, or I don’t care, I’m just never having surgery.” They’ll have personal reasons for that that often relate to other things that have happened in their lives.  If that really is their feeling and that’s what they want to go with, then they need to understand that.  It’s like when you think about – this is a bit of a bloke analogy – so when you buy a Holden, for example, did you buy a Holden because that was the best car, or did you buy a Holden because your dad always bought Holdens?

Or anything that you buy, why did you make that choice to buy that brand?  Often, it’s because in your family that was the talk about what’s the best thing to buy.  It’s a shortcut decision making strategy.  We tend to do shortcut decision making, there’s nothing bad about that.  Sometimes we might just want to have a bit more of a process than just the shortcut.

Joe:                 Exactly, because we think that we are so rational when we’re actually not.

Suzanne:         That’s right.  I don’t think that’s a bad thing.

Joe:                 Yes, but as you say, it’s important to acknowledge that some of those things are irrational and when you use a structured approach, it gives you some more confidence around what’s happening.  I guess that could also help with dealing with negative, intrusive thoughts that you get when you have cancer, that you can’t just get out of your head.  Is there anything we can do, Suzanne, to make that better, to make those thoughts go away or stop for a period of time?  What can we do?

Suzanne:         It’s a really good point because it’s really common to have intrusive thoughts.  For people that don’t know what that means, it’s, for example, you’ve been told that you’ve got cancer and suddenly wherever you are, a thought, an unpleasant negative thought about the cancer just pops into your head and upsets you.  We hate them because people don’t like these intrusive things.  The trouble is, if you push it down and you suppress it, you make it stronger.  If you tell yourself, I’m not going to think about White Holdens, I’m sticking with the car thing, you’re still thinking about it.

If you tell yourself, it’s just a weird thing that happens.  If when you get an intrusive thought, you go, “That’s terrible.  I must not think that, I must not think that, you will make it worse.” Okay?  The first thing I would say is, intrusive thoughts, like that popping into your head, it’s just normal when something like this happens.  Don’t say to yourself, I’m obviously not coping well, I shouldn’t be having those thoughts.  It’s normal to have those thoughts will be stronger if you’ve got an appointment with the doctor coming up, or if you put the TV on and someone’s talking about cancer, there are things that might trigger those.  It’s part of processing the cancer experience.

If the intrusive thinking gets so bad though that you can’t sleep or it’s really making you anxious all the time, then you can go and see someone to help you with starting to challenge those intrusive thoughts.  In cognitive behavioural therapy, and I go through this in the book, there’s a process of saying, first of all, become aware of the thoughts that you’re having that are driving your distress, because sometimes you’re not even aware that they’re there.  First of all, if you suddenly find that you’re feeling distressed, check yourself, what’s in your head and write it down, so you keep a little bit of a diary about what your intrusive thoughts or your worries are that keep popping up.

That way, then, you can look at them and you can see if there’s a pattern.  Now, it’s quite well-known that there are typical patterns that people will have.  There’s black and white thinking, it’s got to be all this way or it’s all terrible.  There’s this black and white or all or nothing catastrophizing.  If this has happened, therefore, everything is going to be terrible.  That’s another common pattern.  Self-blame, this has happened, now it’s my fault and everybody’s going to have a miserable life and it’s all down to me getting cancer.  There are a number of different patterns.  It’s normal, most of us do it, it’s like those of us, if you go to a car park and you can’t see the car, you immediately think it’s stolen or you think I must have left it on a different floor.

The reality is the same for people who think either one, the person who think it’s stolen gets really upset and the person who thinks they put it on another floor just thinks that’s boring, I’ll have to go and look somewhere else.  Same objective thing happened, emotional reaction to the two things are very different.  How you think does influence how you feel.  Awareness of that and understanding your own personal patterns, so that you can then challenge that.  It’s a common thing that drives insomnia, for example, is people who can’t sleep will often put their head on the pillow, immediately their thoughts are full of negative worries about the cancer or about anything.

Then they compound it by then negatively saying, “Now, I can’t sleep, and I won’t sleep.” They get more anxious and they’re less likely to sleep.  We can torture ourselves very well with our own thinking.  I do it, too.  It doesn’t mean you’re crazy.  I do it.  I usually would think the car was probably stolen, although, as I get older, I realize it’s more likely I left it on the wrong floor.  You can get a little bit of mastery with it.  A different approach to the thoughts that some people like is, mindfulness, which stems from what is tradition and meditation.  That doesn’t work for me very well, personally, but I know it works for other people.

You can try different things, you can try challenging your thoughts and replacing them with a helpful thought.  No, I’m sure my car has not been stolen, I’m sure I’ve left it on another floor.  Immediately calm you down a bit.  Same sort of thing with cancer.  Or mindfulness is more about becoming aware of the negative thoughts and then seeing then justice of thought in the present moment and trying to separate yourself emotionally from the thought.  If you want to learn how to do that type of coping strategy, you can get self-help materials about mindfulness or you can get someone to teach it to you.

Or you can do cognitive challenging, one that I’ve just talked about, or another approach is to try to distract yourself to be more focused on what you’re really trying to achieve what your goals are.  Most psychologists and nurse counsellors will have a range of different types of strategies that if a person feels like it’s getting on top of them a bit, and they want to feel differently, then get someone to teach it to you.

Joe:                 Absolutely.  Suzanne, if you start writing things down and you notice a particular pattern that comes up, let’s say it’s self-blame or something else, how do you challenge it?  How do you turn it around?

Suzanne:         You ask yourself a question?  Is this a realistic thought?  What is the evidence that this is a realistic thought?  I got a pain in my toe, I’m sure the cancer has moved there.  Okay, hold that, let me pull back for a minute, what is the realistic evidence that that is the case, so you can challenge that thought with fact and then you can ask yourself a secondary question to say, is this a helpful thought to have?  Is it helping me to think in this way?  What can I practically do about the thing that I’m worried about?  Is this helpful?  You’re challenging the veracity and the helpfulness of that thought.

Then you say to yourself, what’s a better way to think?  Replace that thought with a more helpful thought.  It’s not all about, everything’s fine, I’m just going to think positive, not at all.  It’s about coming up with a way of answering yourself that helps you to feel better about the situation.  It might be, I’ve got that pain in my toe but it’s unlikely to be the cancer because I had my check-up last week and I was fine, and I’ll be seeing the doctor again.  It’s not helpful for me to think this way, what else can I focus on?  I probably kicked my toe or it’s a bit of gout or whatever.  Then focus, direct my attention to something else that is more helpful.

Joe:                 Absolutely.  Suzanne, I know that cancer is incredibly hard for people who go through it themselves but also, for their families, like I know it’s been incredibly tough on my wife and my mum.  What would you say to someone who’s supporting their partner or someone who is close to them through cancer?

Suzanne:         It’s really tough being a partner of the family member, because you have to put yourself second, there’s no question about that, the person with cancer has got the cancer, your job is to support them and look after them.  You have your own fears and worries and concerns and it’s going to be exhausting.  I think first of all, you’ve got to understand that as a partner, you’re doing the best you can.  I think carers, partners can feel negative about themselves if they’re not able to relieve their person’s fears and worries and can be unrealistic about what they can do.

You do the best you can to look after the person that you love who has cancer.  You remember that they’re a person still, too, it doesn’t give them permission to just be awful all the time.  They can be awful occasionally, but they’re still a real person.  That’s what I say.  I remember many years ago, someone describing to me their relative who was being really difficult, their relative had cancer.  I listener to this tale and long story and I said, “What were they like before?” They said, “Just the same.” Cancer is not going to turn people into a better person overnight.  Let’s put it into context here and let’s work it through.  In the end, we’re all people.  We’ve got our own personalities.

Partners need to self-care, they need to give themselves a break, they need to every now and again go, “No, I’m going out and I’m doing whatever.” I know in my own family, my family is full of people that’s gotten cancer and every now and again I’ve thought, “That’s a bit much.” You’ve just got to negotiate that.  Be prepared to say, “I can’t do it.  I’ve got to have a break.” It’s like a conversation, I suppose, it’s like any relationship in a family, where two different people, we’re doing our best to look after each other, we’ll have misunderstandings occasionally.

You’ll need to talk it through, if you can.  I say this in my book, I say, you need to talk about the cancer every now and again, but you don’t have to talk about it all the time.  Negotiating those things in some way and working as a team.  The best thing that people can do is work together as a team within the family and within a relationship.

Joe:                 Absolutely.  The one thing that surprised me was that when I had cancer and I had friends and people I knew would say, “Just let me know how I can help.” I found it to be the most useless thing you can say to someone, because the reality is that now you’re in fact asking me to come up with a way to ask you for a favour.  Do you think there are better ways, do you find, to ask for help that would actually encourage people to be more positive?

Suzanne:         Yes, I suppose it’s a cultural thing, isn’t it?  A lot of us come from cultural backgrounds.  Where being stoic is the thing.  We don’t need help, we’re just going to get in and march on through.  I’m a bit like that myself.  I think part of that is our responsibility when we need help as a carer, as a patient, to know that there are people who are close to use who would love to help us but don’t know what to do.  Rather than feeling indebted to them, it’s like a gift to them, they’re watching you suffer, they want to help you, they don’t know what it is that would be helpful.  I guess what I do with my friends when they’re going through an experience like this, and we all are going to have these experiences, I will actually be explicit.

I really want to do something to be helpful but I’m not sure what that would be.  Give me a hint and I’m proposing; would you like me to take the kids out for the night?  Would you like me to pop over for a coffee?  Can I cook you something?  Do you want me to just stop speaking?  To be explicit about what it is that I need you to do.  Similarly, when I was the person who needed help, when I was looking after my mother, I learnt to be very explicit about what it was that I needed.  This is happened right now, it would be great if you could do X.  I had to be explicit because people couldn’t read my mind, they didn’t know what it was, what was really happening with me.

The sort of help that I needed was practical help.  I was very fortunate, I had some very good friends who were able to go, “Right, I can help your problem-solve that problem, Suzanne, and work that through.” I think sometimes the problem is within ourselves, in that we’re a bit of a stoic nation, in many ways.  Not everyone, of course, it differs.  The tendency to think you’ve got to be strong.  Sometimes being strong means being prepared to ask for help.

Joe:                 Yes, that’s fantastic advice, Suzanne.  Sometimes you just need to be very straightforward and direct about what you need.

Suzanne:         Well, that’s it.  Whether it’s saying, your neighbours are driving your crazy, can I drag them off for you?  What can I do?  They are very practical things.  Some of that as a carer and a friend and supporter is just being observant, notice what’s going on and see if you can notice what’s an external stressor affecting the person you care about and try and get that away from them if you can.  I always think practical help is a really good thing.  Can I come over and shall we go for a walk together?  What can I do?

Joe:                 Absolutely.  As you point out in the book, it takes special courage to really deal with cancer.  What could someone do to be more resilient through these tough times?

Suzanne:         I think everybody who is coping with cancer has courage because they get up the next morning and they face whatever is in front of them.  I think we probably don’t recognize our own courage often enough.  It’s really just all the things that I’m talking about.  When you need support, seek it.  When people offer you support and it would be helpful, take it.  Look around you at what is available for you, find things that give value and pleasure in your life and build them in.  Do those things, take time for yourself.  If you think of your energy as a bucket and difficult times leak water out of that bucket, you’ve got to put water back in.  Find ways to fill your bucket.

Joe:                 Absolutely.  In your experience, what are some of the most common misconceptions that people have around cancer?

Suzanne:         That’s a hard question, actually.  What would I think there?  I guess people fear cancer treatments, but cancer treatments can be difficult but there are good supportive care services and treatments around to help you get through that.  As a person with cancer, you should know that your opinion is important and what you want is important.  You have a right to a second opinion and to ask questions and if you doctor won’t do that for you, get another one.  You have a right to have care centred around your need, and you might need to be assertive around that.  We all know now cancer is not contagious.

People used to shy away from people with cancer, that’s not so much the case anymore.  Try to find out information so that you can allay many of your fears and understand realistically what is ahead of you.  Know that most people cope with cancer pretty well.  They get through it.  They move through it.  The sky looks blue again.  You can feel like – I had a sister who had breast cancer when she was quite young and even I worked in the field, I was absolutely shocked.  I still have this memory where I’m a bit of a catastrophizer, you might have picked that up.  I just thought my job was to look after her and suddenly the world looked like the worst place for me, a dark place.

Do you know, that one day, suddenly, I noticed that sky was blue again?  I was so sad, I felt like that sky was never going to be blue and beautiful again, but it was.  It took some time, but it got there.  It can be hard sometimes to know that there is a light at the end of the tunnel, but there usually is.  Sometimes we’ve just got to be a bit patient until we get there.

Joe:                 Yes, Suzanne, you’ve met a lot of folks going through cancer.  Was there a moment that touched you the most?

Suzanne:         Do you know what I think?  I think when I was first in the field and I was a mother of a young baby and I found if I was working with parents who had small children who had cancer, I think that’s because I could so imagine me in their place, that must be one of the hardest things to face.  Again, what I learned over time is how strong people really are, and how parents can band to get through that experience.  There’s difficulty in life that comes to us, no one cancer is better or worse, in a sense, really, to the person that’s experiencing that, it’s what matters to them right now.  Someone once said to me, you know, Suzanne, suffering is not a competition.  I thought that was a great thing when I heard that because I think at the time, I was going, “It could be worse.” They were saying, “What?  You want your leg broken, as well?” A competition.  People should remember that.  We have a tendency to go, “It could be worse, or it could be better.” It’s your experience that matters.

Joe:                 That is so true.  Suzanne, as a researcher, did you ever stumble upon something that made you go, “Wow, this is really special, I’m onto something here.”

Suzanne:         Do you know, the special things I have learnt had more been talking to people with cancer.  I’m a hard-working researcher, I work hard at trying to make things better for people with cancer, that’s the point of my research.  The most beautiful insights I get from people who have talked to me about what they’re going through, I suppose what that’s thought me is just how different everybody is, and how special people are in terms of their ability to look at what’s happening to them.  From my external point of view, I see people in very difficult circumstances who are doing such a great job, and I marvel at the ability of human beings to help each other and to look after their families.  That’s a special case.

Joe:                 That’s really amazing.  Suzanne, thank you so much for your time and everything you’ve shared here.  This is really fantastic.  Suzanne, if someone wanted to find your book, how would they go about it?

Suzanne:         Okay, so the book is called: Facing the Tiger.  A guide for men with prostate cancer and those who love them.  It is published by Australian Academic Press and so you can look them up online and buy a copy.  It is also listed in Amazon, in an electronic version that you can download to your Kindle or whatever.  If you Google Suzanne Chamber, Facing the Tiger, you should be able to find it, but Australian Academic Press will have copies and, as I said, Amazon sells it, as well.

Joe:                 Thank you so much, Suzanne, it has been profound.

Suzanne:         Thank you so much for your time, as well, Joe.

In this episode, I’m talking to Karen Barrow, a New York Times journalist who has put together a truly unique and inspiring project to tell the story of what happens when the treatment ends. This book should be on every cancer patient’s coffee table for those dark times when you don’t know if there’s a light at the end of all this… Stay strong, you can get through it! Here’s what we talk about in this interview:

Picture Your Life After Cancer (Amazon)

Picture Your Life After Cancer (New York Times)

Well Blog (New York Times)

Karen’s Work at New York Times

Joe:                 Hey, this is Joe Bakhmoutski and welcome to Simplify Cancer podcast.  Today, we’re going to hear from Karen Barrow, who’s put together this incredible, this inspiration books called: Picture Your Life After Cancer.  It’s really amazing and I hope you check it out.  Let’s get into it.  Karen, thank you so much for doing this.  I really appreciate your time.

Karen:              No problem.

Joe:                 Karen, your book puts cancer in a really different light.  I guess in many ways, people find positives, a new appreciation of life, is that something that you expected?

Karen:              Just a little background, we stated Picture Your Life After Cancer online, as a digital project, in 2010.  It was primarily a way of collecting images of people who were dealing with cancer, who considered themselves after cancer.  After cancer for a lot of people could be after diagnosis, or after treatment, or after cure, or after accepting death or a relevant death.  I didn’t really know what I would get.  It was amazing to see the percentage of stories that came in, that were very positive and that were stories of people who found spins to put on their experiences that helped them appreciate life more, helped them appreciate friends and family more, and help them appreciate their own health more.

Joe:                 Absolutely, because it’s given – I’ve seen a lot of books and I’ve tried to find a lot of resources online, offline and everywhere.  I think your book really captures a voice that is missing, a voice that hasn’t been heard before.  Do you feel that voice is heard out in the greater community, like do people have maybe a better sense of what cancer is about?  I know it started as an online project and turned into a book later, do you think people have a better sense of what it’s like?

Karen:              I think within the book, people can find stories that they relate to, and that helps them feel less alone in the process of going through cancer, because if you’re going through treatment, it’s very individualized, it’s very specific to you, the kind of cancer you have, the treatments you’re choosing, how you’re choosing to deal with side-effects, but the impact it has on your mental psyche and your family and your friends is more universal than I think people realize.  If you go through the book and you read stories from other people, you’ll find some that you have nothing in common with, but you’ll find plenty that resonate with you and it makes your experience feel less unique and, in that way, easier to understand.

Joe:                 Yes, absolutely, because I find when I was going through it, I remember that there wasn’t really much out there that is positive, because there is a lot of academic resources and there are a lot of biographies and things like that.  There really isn’t anything that is positive, that is in the title of your book, Picture Your Life After Cancer.  You can say, “Wow, I’m going through all of this horrible stuff right now, but there’s a light at the end of the tunnel and I know that there’s going to be a positive after that.”

Karen:              Yes, well, I, personally, haven’t gone through a cancer experience, thank goodness.  I think that’s true.  I think it’s true of any chronic illness, when you’re dealing with it, it’s very easy to get stuck in the tunnel, like, this is my life, it’s never going to end, I don’t see what’s going to happen afterwards.  It’s helps to hear from other people, from regular people who don’t necessarily have a book deal and can get their biographic written or tell their stories about what it’s like on the other side.  I hope it gives people something to aim for in the process.

Joe:                 Yes, absolutely.  In the introduction of the book, you say that the stories are told about new adventures, new milestones, the new-found happiness, but also loss and sadness and confusion.  Are these emotions, are they universal, do you think?

Karen:              I think they’re very universal.  I think for all the people who tell the positive stories, they survived cancer and they went on a trip to Paris to celebrate or they got married, or they found some happiness in the end, I’m sure there was sadness also built into that.  It’s a very complicated, emotional thing to go through.  People can choose to take which side of it they want to, a lot of people told very positive stories, a lot of people told very sad stories, a lot of people lost their way as a result of cancer.  They were religious before and they just decided they didn’t believe in god anymore, because it just didn’t fit with their experiences anymore and they were sad as a result.  There was a depression as a result of cancer.  It’s a very multi-faceted outcome.  I think what I’ve learned is that a lot of it has to do with how you choose to perceive the experience.

Joe:                 Yes, that’s pretty amazing, that you say it’s about a choice.  The choice that you can choose to be positive and that you can choose to aim for something better and be a better person.  You can choose to pull yourself out.  Did you have that feedback, that for most people, having that light at the end of the tunnel, having something to look forward to, is that something that would keep them going?

Karen:              I think so.  A lot of people, if you flick through the book, you see pictures of friends and family, children, spouses, relatives and for a lot of people, it’s that that kept them going.  There are even a lot of pictures with people with their cats, dogs especially.  Just knowing that there was somebody or something to live for and to suffer through the hardships of treatment for made it worthwhile for them.

Joe:                 Yes, absolutely, even personally, I used all of this visualization myself, just thinking about it, I had a picture of my son, and when I would be going through treatment, without physical, I would carry it in my hand and with the drip with the chemo stuff, that I would have this mental image of him.  That would really give me this positive rush to keep going.  I think that’s what a book like that does and that’s what positive stories do from your family, from friends, but also from people you don’t k now.   I had your book lying down there on my coffee table and there would be times when I would just pick it up and open it and look at it, at other people.  Even complete strangers gave me a sense of hey, I’m not alone here.

Karen:              Yes, it could be nursing staff that helps you get through it, it could be a religious community or your neighbors.  It’s very easy to feel alone when you’re the one getting chemo therapy in the hospital and going all the time for that and just getting lost in the process.  Finding a human connection can help pull you out of that funk, too.

Joe:                 Did you have a sense that people have met connections with medical staff, with oncologists, nurses, were those stories coming through?

Karen:              Yes, there were a handful of people.  Those stories we selected for the book were just a small piece of the number we got online.  There were plenty of people writing thank you notes to their doctors, especially to their nurses and to the caregivers in their lives, whether their loved ones or hired help.  In times of need, those are the people who help lift you through it.

Joe:                 Yes, absolutely.  Karen, I was really struck by a quote, that sharing stories is really a reminder that we’re not alone.  It’s simple but an elusive truth.  Was it something that you were thinking of when you started this project?

Karen:              Yes, a lot of my work that I do, I started as a health reporter.  As a digital producer, I did a lot of work thinking about evergreen stories, because everything you put on the internet lasts forever.  I like the idea of telling stories, like you said, are just as relevant now as they could be in ten years.  Research studies are important, and the medical community are making great strides in finding new treatments and evolving medical care and cancer care.  The human stories don’t really change.  I’ve done several projects on chronic diseases and people telling stories of chronic diseases.

I find that the themes aren’t very different from one disease to the other.  Sure, the hardships are different, whether you’re dealing with arthritis or you’re dealing with cancer or you’re dealing with Alzheimer’s, how you adapt is very different.  Underlying all of that, it comes down to how do you move from day-to-day with a chronic illness?  How do you mentally let yourself move past the fact that you’re sick and live life?

Joe:                 Absolutely.  Karen, what were some of the things that people say that help them on this journey?  With dealing with chronic diseases, with cancer particularly, what were some of the things that helped them through the emotional journey?

Karen:              A lot of it is really putting a positive attitude on, even when you’re upset and down in the dumps and feeling sorry for yourself, is finding a way to get out of that.  Even if it’s – some people have hobbies.  I’ve met a couple of younger people who would play video games and lose themselves in that when they’re feeling upset.  It’s wonderful, they have a place to forget for a few minutes that they’re not well.  A lot of people have hobbies and interests that they found ways of adapting their abilities to continue doing.

I interviewed a few comedians who’ve had illnesses and they just find ways to make fun of themselves for what they’re going through.  That’s obviously not for everybody.  For them, laughing at themselves helps them get through it.  If you’re determined to find a coping mechanism, there are ways of putting positive spins on what you’re going through or merely putting aside the fact that you’re sick and trying to forget about it for a little while can help your psyche for a little while.

Joe:                 Exactly.  It’s not really a glamorous experience.  It’s made up of all these little moments, like waiting for your next oncologist appointment, or not knowing how the treatments worked, or being around people who cared about you, playing video games, doing the new standup comedy routine.  People have an entirely different perception of it, just if you read blogs online or if people talk about this heroic survival, how do people reconcile the fact that it’s really not about that.  When people go through cancer, you don’t feel like a hero, you feel like a regular person who’s just trying to make it through to the next milestone.

Karen:              Yes, a lot of people I’ve found reject the word “survivor”.  They feel like it’s too heroic of a title.  Nobody asks to have cancer, nobody chose to have cancer, they just got it and they figured out how to deal with it.  For a certain portion of the community, they appreciate the term survivor because they did go through it and come out the other side.  A lot of people, they don’t like that title because it’s just like, this was the hand I was dealt, and I figured out how to play the cards.  It’s not that I’m a survivor, hopefully anybody else given the same deck of cards would figure out how to get through it, as well.

Joe:                 Also, survivor implies powerlessness in a way.  That also could have negative connotations, as well, for your self-image, right?

Karen:              Yes, you’re in control to a degree but you’re not in control to a degree.  If you didn’t survive cancer, whose fault is it?  It’s not really your fault, right, because the cancer was too aggressive, or the treatments didn’t work, or it was caught too late.  It wasn’t as a result of something you personally did wrong.  That’s another good point, yes.

Joe:                 Karen, there were so many amazing stories that went into the book.  You were selecting things from a myriad of stories that you had online.  That must have been a really difficult process.  How did you choose what goes in there?

Karen:              It was very challenging, the book itself was photo-driven, we started with the best photos and the photos that captured the stories that were being told.  Then secondarily, I wanted to make sure there was a variety, so a variety of ages and races and genders and experiences and positive stories and negative stories and people who lived and people who didn’t live and people talking about relatives versus people talking about themselves.  It was important to me to show that range of people who told their stories and hope that it represented the range of reality of the people out there dealing with this.

Joe:                 A bit of it goes back to the same theme that it’s universal, that everyone goes through it, no matter who you are, your age, where you live, your ethnicity, your religion, it’s down to human experience, it’s down to the individual.

Karen:              Yes, and I wanted people to flick through the book and maybe see a face that looked familiar or maybe see a story that read familiar, or maybe saw a picture that appealed to them.  Everyone has different tastes and interests and diversity.  I wanted to make sure that that mix was included.

Joe:                 Absolutely.  From personal experience, Karen, I can really say that life after cancer will never be the same.  That also makes me reassess my life before cancer and really start looking at things in a different light.  Is that something that is common, in your opinion?

Karen:              Yes, a lot of people talk about a shift in priorities, and how things that were once so important to them just feel petty now.  Maybe they were caught up in work and they were busy all the time with work and they did their work to the sacrifice of their family.  Then they went through this experience and they realized that it just doesn’t matter at the end of the day and the loved ones are the ones that appreciate them.  Or vice versa, frankly, if you had a poor relationship with a spouse.  There were stories of people who said, “I went through cancer and I realized it’s not worth suffering with a spouse that doesn’t treat me appropriately.

I ended the relationship and I wanted to concentrate on me and live a happy life.” It definitely, in many cases, it led to a shift in priorities and a shift in values.  Some people found religion, some people lost religion.  Some people had new motivation to run a marathon, run a triathlon, travel the world, climb a mountain, just to be able to check that off their box.  I think, in general, people just have a better appreciation for the days that they’re given.  They realize that time is fleeting.

Joe:                 Yes, time is fleeting.  That’s a crucial thing, when we talk about fleeting time, do people talk about the fact that they need to do more with that time, how do people talk about time?

Karen:              They want to appreciate it, they want to appreciate it more and they want to make sure that they’re spending their time on the things that are meaningful to them.  For some people, that’s lazing around on the couch with their family and just hanging out, for some people, that’s checking off their bucket list and making sure they accomplish everything they want to accomplish.  For some people, that’s training for marathons and running and getting in the best physical health and hopefully extend that life.  For some, it’s not.  Everybody values time a little differently.  Some people are just trying to figure out what to do with their time that they’re given now.

Joe:                 Absolutely.  Karen, we touched on some stereotypes because there are so many stereotypes, like fighting cancer with your boxing gloves on, that survivors are heroes or that cancer is a death sentence.  A lot of these stereotypes are simplistic and, in many cases, they’re not true.  Fighting presumes, like what we just talked about, that fighting presumes that you can win just because of your mental toughness and willpower.  Do you think these attitudes are changing in the society, with all of your work at the New York Times, is that changing at all, do you think?

Karen:              I think so, I think people are a little more sensitive to the fact that cancer to a degree feels random.  Obviously, there are things to raise your risk of various cancers but at the end of the day, who gets it and who doesn’t get it, it’s unclear why to a certain degree.  While treatments are getting better, they’re not perfect, there’s no cure, so you don’t want to blame the individual if they don’t successfully make it through treatment, because that’s not necessarily their fault.  If they follow their doctors’ orders and they get all the treatments that were prescribed for them, that’s not their fault if it didn’t work, it’s medicine’s fault.

Joe:                 Yes, absolutely.  Is there a sense of the stories that people want to tell in the media, is there a difference in how people want to talk about cancer survivors?  Are people specifically going through treatment right now?  Do these stories, is that a voice that is heard enough in the greater community?

Karen:              I don’t know, I think that people would want to be able to tell their stories.  I think people want to be able to tell stories that relate to them without being put in a box and without being lumped in with cancer survivors or they’re battling cancer, or they’ve failed treatment.  Everybody’s an individual and every story is unique.  I think the people who want to share their stories want to make sure that their voices are heard.

Joe:                 Do you think that those voices, those stories, are they being heard by government organizations, medical specialists?  Are these stories something that gets incorporated into healthcare, into wellness, that side of things?

Karen:              I think more and more so.  I think the medical community is realizing the importance of treating the whole person and not just the disease.  You can see that through support groups and the fact that doctors might connect somebody who’s newly diagnosed with somebody who has already had the diagnosis.  That’s happening more and more, so that they have a mentor or somebody to help steer them through the decisions that they’re going to have to make and the process.

I think social workers, for sure, understand that concept, that we’re not treating a disease, we’re treating a person.  That person has a family and that person has a life, and those people want to do specific things.  Treatment decisions are made knowing that.  If something is going to effect you one way, but that way it’s going to effect you might hurt you emotionally more than some other thing, that might be part of the decision-making process for treatment.

Joe:                 Absolutely.  Now, more people are living after cancer than ever before.  It’s great news.  Many folks have different needs in terms of adjusting to life and to hopefully avoid some late effects and some side-effects, as well.  When it comes to our media and our community at large, how do they see cancer survivors?

Karen:              I think the people who know people who have gone through it are more sympathetic or more understanding than the people who don’t.  I think the stereotypes, unfortunately, still exist I think people who haven’t had to deal with the experience first-hand, like, the only thing they have to reference are those stereotypes, or the stories they’ve read of famous people dealing with their illnesses.  It’s a little bit like anything else, it’s hard to know what you don’t know.  People who just haven’t experienced it, I don’t think they can fully understand what the experience is like.

Joe:                 Yes, it’s so difficult, isn’t it?  Yes, like you say, to relate to something you don’t know.

Karen:              Yes.

Joe:                 Karen, you have a blog on wellness, how did that come about?  What would you say are the three big takeaways about healthy living that you can share?

Karen:              The blog is called: Well.  It’s a vertical of the New York Times, it’s certainly not my blog.  What Well focuses on is personal health.  We’ve broken personal health down into five pillars of mind, body, food, fitness, and family.  We consider those the five pillars of personal health.  The whole concept of the blog is the small changes that you can make in your life to improve it.  Whether that’s just knowing that drinking a glass of chocolate milk after a run is probably the best thing to do to prevent soreness versus how to deal with your spouse, versus finding somebody to relate to after a cancer experience, Well is devoted to helping people just live better lives day-to-day outside of the medical office.

Joe:                 What were some of the specific takeaways that you found that could really help someone to help deal with cancer or to just live a healthier life?

Karen:              I think some of the most surprising things for me are always the mental angle, because mind is so important in your health and the importance of whether it’s meditation or self-reflection or just sitting in a quiet room just taking a few moments and stopping and thinking and trying to change your attitude and things like that, like, how important the mind is to your body.  We keep saying, your cancer experience could be happy or sad and it’s just a matter of the spin you put on it.  The people who have a positive attitude, they’re making an effort to do that.  Just being able to do that is important to your health.

Joe:                 Karen, I’m a big fan of self-help because I believe that this is one of the things that, in terms of mental health, that really doesn’t get as much attention that it actually deserves.  How much of the articles that you see and some of the things that you put together, how much of that is something that people can really put to practice in their daily life?

Karen:              The majority of things that we put out on Well are things that you can put out into practice.  There are a lot of fitness tips, there are a lot of mental wellbeing tips, and there are a lot of food tips, and relationship tips.  That’s your everyday life.  You wake up, you say hi to your spouse, you say hi to your kids, you go to work, you have lunch, you come home and exercise or you don’t, and you come home grumpy, you come home happy.  Every day, these are these little small things that you decide to do that could affect your overall health.  Do you sit at your desk for five hours’ straight?  Or do you get up every 20 minutes and take a walk?  Very simple things that we can suggest for you to do to help improve your overall health.

Joe:                 That’s fantastic.  Karen, if someone wanted to check out your book or your other work, like the Well blog or your articles, what would they do?

Karen:              Picture Your Life After Cancer is available on Amazon.  You can also see it online if you go to newyorktimes.com/pictureyourlife.  That’s where the digital version of it is.  You can also just Google Karen Barrow.  You’ll see other work that I’ve done.

Joe:                 Fantastic.  Thanks so much, Karen.

Karen:              Thank you.