Simplify Cancer

In this episode, I’m talking to Daniel Sencier who shares his perspective in battling prostate cancer, dealing with a broken health system and finding new meaning and a new way of life despite cancer. Here’s what you going to find out in this interview:

Prostate Cancer – Daniel’s Blog

Joe:                 Hey, this is Joe and welcome to Simplify Cancer Podcast.  Today, you’re going to hear from Daniel, who found a new meaning in life and a new way of life through prostate cancer, which is incredible, so check it out.  Daniel, thank you so much for coming and chatting with me.  I really appreciate it.  Daniel, I really want to start at the beginning and I really want to understand where you’re coming from with prostate cancer.  When did it all happen and how did you react when you first found out you had it?

Daniel:             I only found out because I was having annual checks because my father had died of prostate cancer, and I knew it ran in families.  I just went for an annual PSA check, never expecting it to be that at all, but yes, one of the times I went, and my doctor said, “We need to look at this a bit more.” I wasn’t outside the limits, I was still 3.6, which is one inside the 4 in the UK that you have to breach before they send you to a specialist.  He said because it had gone from, well, it had doubled within about a year, so even though it had gone from 1.8 to 3.6, normally, I wouldn’t have been seen, it would have been classes as an okay by a less experienced doctor.

Joe:                 Yes, how did you react?  What was going through your mind?

Daniel:             When I was given the news?

Joe:                 Yes.

Daniel:             Well, I skipped into hospital that day because I had just been accepted onto a University degree, a four-year course.  I thought, wow, this is going to be amazing.  I didn’t even have test results on my mind because that’s all I was thinking of.  You know, at the age I was at then, you’ve been back to your doctor and the hospital so many times for your test results, and it’s so boring, isn’t it?  They say, “Yes, everything’s fine, Daniel, come back next year.” I just sat down for more of the same.  Unfortunately, you have got prostate cancer.  You know, when you see in the films, when someone’s given news, and all the background goes blurred and the sound goes off?  I thought, god, I’m having a stroke.  It was just like that.  Everything just went fuzzy and I couldn’t hear his words and his words started to fade out, all I was thinking of was, my god, I’m dying.  A child of the 60s, so cancer equals death.  There wasn’t any other scenario really.  Looking back, I needn’t have been as worried at that stage.  At the time, it was pretty shattering.

Joe:                 Absolutely.  I remember that’s what happened to me, as well.  The whole world came to a stop and everything was in slow motion and the whole sound was muffled.  It was just bizarre.  Yes, I remember I was sitting at the urologist’s office and nothing made sense, it just didn’t connect.

Daniel:             That’s right.  I left that day with a pile of leaflets and the worst thing that day I left with was this 24-hour helpline number.  I looked at that number and I was like, “This is like having a connection with god, at least I can ask anybody anything, anytime I want.  I took that number home.  The first time I rang it, it went onto an answering machine.  Voicemail.  I thought, wow, so I tried it a few more times.  About the fifth time I tried it, there was nothing.  At a later date, I found out there wasn’t actually anyone manning that, and the tape had actually run out because it was the weekend.

Joe:                 No.

Daniel:             Would you believe it?

Joe:                 That’s ridiculous.

Daniel:             There’s me wanting to get in touch with someone who knew what was going on inside of my body.  It was a blooming machine on some specialist’s desk.

Joe:                 That’s horrible.  Wow.

Daniel:             That was all part of the enquiry six months down the line, when I ended up holding a protest outside the hospital because I had no treatment of any kind for 18 months.  I’m convinced they were just waiting for me to die, you know?  Why else wouldn’t they give someone with Gleeson seven prostate cancer, why wouldn’t they give them any treatment?

Joe:                 What happened?  Why weren’t you treated?  What’s the story with that?

Daniel:             I was in a system where I was just floating along, and no one really knew where I was up to or what anybody else was up to.  It was a broken system, an admin system mainly, but nobody was looking at anybody and to this day, when you’re diagnosed with cancer, you think some great NHS machine is going to jump into action and they’ll know exactly what to do at every step of the way.  Nothing like that.  It was just, I was floating down a river, at the end was the waterfall of death and nobody knew I was there.  It wasn’t until I decided to hold a protest outside the hospital.  I’d never help one in my life, so I didn’t even know how to make a placard.  As part of this protest, the hospital got to know about it and they did me the biggest favor ever in the whole campaign, which was they threatened to sue me if I went ahead with the protest.

Joe:                 That’s ridiculous.

Daniel:             I sent that to the TV, the national papers, the Daily Mail got involved and the BBC and as a result, we went ahead with the protest.  The whole hospital board resigned.  It was just chaos at the hospital.  There was a big enquiry.  It all just went crazy after that, you know?

Joe:                 Is that the time when you started a blog?

Daniel:             Yes, well, it was because I had already started the blog.  I could use that as evidence as what had happened to me every day since diagnosis.  If you are diagnosed, start a blog, even if it’s only as a diary of events of what’s happening to you.  You can look back on that at any stage, either for your own personal benefit or for a surgeon’s benefit.  It’s a real record of what’s happened to you that doesn’t exist in the hospital system.

Joe:                 That’s a great point, Daniel.  I guess it’s also important for people in your life, your partner, your friends, your family, it’s just crazy.  What about your wife, how did she take it all?

Daniel:             My wife.  Well, from my perspective, she was in more of a state of shock than I was, and I was more worried for her than I was for me, really.  I think that’s pretty common to most men I’ve talked to.  Yes, she was just in terrible shock.  She was very supportive, and she was the main person I had talked to, but I don’t know if she’d describe it any differently.  Yes, in as just as much of shock as I was.

Joe:                 Did you feel that other people in your life, like your friends, people you maybe worked with before, or someone else, did you feel supported in the way that you wanted to be supported from them?

Daniel:             The friends bit, that was a strange bit, because some people who had been friends for a long time suddenly disappeared.  Like, I’d only discovered I had a half-sister about three years before, we became very close.  When she found out I had cancer, I’ve never heard from her since.  It was like, “My god, he’s going to die, I’ve just found him.” She threw me in the bin really quickly and set fire to me.  Yes, most other people, people who were only acquaintances because a real support.  It was a mixed bag, really.  All the family were fairly good, but friends, I couldn’t believe some so good and some so bad.  I guess everybody deals with it differently.

Joe:                 Yes, it’s pretty shocking, isn’t it?  The same thing happened to me, as well.  Did you have any explanation to yourself, like, why people didn’t support you, that have disappeared from your life, as you say?  Why did that happen?

Daniel:             I think they were scared of losing me.  They didn’t know what to say, how to bring up the subject, they couldn’t deal with it, whereas, I was dealing with it, because you have to, don’t you?  They didn’t have to deal with it and it was a much easier thing for them to cross me off their Christmas card list.  That was their way of coping, I guess.  I don’t know if you had the same thoughts on that?

Joe:                 I think so.  Definitely there was a part that people probably couldn’t deal with it in a way, I think some of it was, it sounds ridiculous, but I think some of it is people might think of it as a disease, right?  Like, my god, you have it, I could catch it, too.  Not on like an intellectual level, but on a subconscious level, I don’t know if it makes any sense at all.

Daniel:             I think that’s right, yes.  I remember talking in the various forums about that type of thing.  Yes, it’s like when people get aides, suddenly you become unclean.  Keep away from him, he’s got prostate cancer.

Joe:                 Yes.  Absolutely.  Was your blog, was that something that helped you personally to deal with it all?

Daniel:             Yes, that was one of my main helps, actually.  It was my daughter Sasha who said, “Why don’t you start a blog?” Of course, my first question was, what’s a blog?  I didn’t know what a blog was.  She explained.  Once I started it, when I look back at the early posts, the writing is terrible and my progression in writing over the years in that blog led me to the job that I do now, because at first, it was just somewhere where I went every day and I knew that I could write down all of my thoughts, all of my worries, everything.  Once I’d done that, it was like I gained peace from it.  People would respond to the blog and reply to the blog.  I’ve always had a problem with stress until I realized that on a blog, if you write down stuff, it can relieve you in a way from all of that stress, just by putting it on paper.

Joe:                 Yes, absolutely.  How did people find out about your blog?

Daniel:             I suppose I put it out on Facebook and places like that, to family and friends, but the main thing was when it was featured in the Daily Mail and also on the One Show in the UK, on the BBC, then it became big.  In fact, if the hospital hadn’t had threatened to sue me, my blog would still be a non-entity.  Whereas, as it is, by doing that, they turned it into a blog which has won two awards in America for best prostate cancer blog of the year.  I couldn’t have done that without that solicitor’s letter from the NHS.

Joe:                 Yes, absolutely.  What sort of comments did you get from people who also had prostate cancer, from maybe the partners or friends?  What was that like?

Daniel:             Yes, my friends were outraged at my struggle to get treatment.  I think they thought that I might be exaggerating at first.  Even I couldn’t believe what was happening to me.  There was just general outrage, but it was at a time when there were cases all over the country.  The NHS was slowly collapsing, as it is now still and in any collapse like that, there are victims, and I was becoming one of those.

The sad thing is, is the people in the NHS, the top people who were running the trust, as they resign, they nearly always get great jobs in either Australia or New Zealand.  They get them all on Duff references, as well.  When the woman who ran the trust where I was resigned, she disappeared, and I thought, “Well, she’ll never work again, obviously, she wouldn’t even meet me.” Then six months later, I found out she was the head of a trust in New Zealand.  I wrote to that trust and I said, you must have got references, surely.  The references that she’d given were a reference from a previous job.  They didn’t even know she’d been there.  It was bizarre.

For a job so important, I wrote to the ministry of health in New Zealand and said, “Do you realize that there are so many of these guys failing in England, coming over and getting jobs with false references to New Zealand?” I didn’t even get a reply because I believe they are all stitched up in the same thing, you know?

Joe:                 Yes, wow.

Daniel:             There’s a big thing there that we’re all unaware of.  That was quite sad, really, because most of the people who resigned from the hospital after my case are now in very good jobs.  Not in England, of course.

Joe:                 With your story, did that bring about positive changes?

Daniel:             It definitely brought about positive changes, yes, whether they were lasting changes, I’m not sure.  I was a bit disappointed with the apathy around the whole system here, shown by the public, that they resigned themselves to the way things are.  If more people went to that hospital and started to shout about it, I think things would improve to the same extent that they did when I did that.  People are not will to get off their bums and get out there these days.

Joe:                 What do you believe is at the root of the problem?  Is it the process?  Is it funding?  What was the problem?  Why was it all happening?

Daniel:             The problem was the administration.  I don’t think the problem was with nurses or doctors.  Doctors and nurses are not very good at admin, so they have an admin section that keeps everybody on the track.  That didn’t really exist.  When I complained about that and they investigated it, there wasn’t really a process in place.  That’s why my most important message of all to anybody who’s diagnosed with prostate cancer is to become your own case manager.  Don’t think that there’s somebody out there who cares more about you than you do, because there isn’t.  If you imagine for one minute that there’s a system setup to look after you, then you’re going to be sadly disappointed.  Be your own case manager, number one rule.

Joe:                 That makes so much sense, Daniel.  Do you think that really applies to other areas in your life?  I guess the way that I see it, when you start to have cancer, I would say that you need to become selfish, selfish in a way that you have to put yourself first.  I think so many of us, especially men, we dedicate ourselves to a cause and put someone else first.  I think sometimes, it’s like being on a plane, where you have to put the safety mask on first.  I think we really have to put ourselves first in order to help others.  Would you agree with that?

Daniel:             I agree completely.  I was in the British Army and it was number one rule.  That as soon as you come under fire, you protect yourself first, because if you don’t do that, you can’t protect others.  It’s exactly the same with prostate cancer.  If you’re dead, you’re not going to help anybody, but if you can survive this, like I do now, you can be so much use to others, raising awareness and raising funds and counselling others.  It changed my life for the better.

Joe:                 You’re such an inspiration, Daniel.  With all those changes that happened with prostate cancer, and as you were going through treatment, I guess you made the choice to be proactive, the help others.  Can you tell us about all of that stuff that you started to do and how that helped you, as well?

Daniel:             I’ve always been the type of person who puts themselves out to help others, anyway.  It wasn’t as hard for me.  Along the way, I did meet people with a lot of different reactions, some people get prostate cancer, they stay indoors, they hide, and they die.  They don’t tell anyone, even.  It’s very much down to your personality, I think.  I was lucky in the way that I was an outgoing person, anyway, and I enjoy helping people.

When I was diagnosed with prostate cancer, it was just an extension of that, wanting to help people and it just flowed fairly naturally.  I do feel desperately sorry for people who can’t open up and can’t talk about it, that they’ll be like that in other walks of their life, in other scenarios.  Not just prostate cancer.  The more open you can be about it, the more help you’re going to get and the more you’re going to be able to help other people.

Joe:                 What sort of similarities did you pick up on?  You’ve been around a lot of people with prostate cancer.  On the forums, you’ve met them face-to-face.  Did you notice some things people had in common in terms of their reactions, in terms of coping, in terms of going through treatment?  If so, what advice would you have for folks who are going through that sort of experience?

Daniel:             When they were diagnosed, everybody has almost identical experiences, the shock.  It’s after that initial experience that everybody had in common, is how you go on from there.  That’s how everybody branched out different ways.  There were people who dealt with it in the, “Hey, this is not going to beat me, I’m going to kick its ass” type person, down to the, “I’m going to go home now and lock the door and die.”

Everybody else was in between there somewhere.  Most people, it changed their lives for the better, if they survived, it did change their lives for the better.  It gave them a whole new take on life.  I remember after I found out I wasn’t going to die immediately, I went out into a wood and I started talking to plants and trees and touching them because I had never done that before.  I thought, “I hope nobody’s watching.” It’s going to be a white van that pulls up soon and takes me away.

I get down to the ground and look at ant’s nests and spiders and I just wanted to see everything so much more clearly because I had never done that before.  I thought I was going to die, and now I’ve got a bit of time.  I’m still in remission so many years later.  It does, without that diagnosis, my life wouldn’t have been as rich.

Joe:                 Yes, absolutely.  Did that also make you reassess your life before cancer?  Did you start to look at things in a different way?

Daniel:             Yes, I did.  I looked back on my life on some of the things I had done, a lot of the time I had wasted on stupid stuff, you know?  When I could have done far more positive things.  I suppose as you get older anyway, time becomes naturally more valuable.  A diagnosis of cancer along the way, if you survive it, can kick that process in earlier.  I think that’s just what happened with me.  I wasted too much time and I don’t waste any time now, yes, I’m thankful for that.

Joe:                 Absolutely.  Speaking about not wasting time, I know you made so many changes in your life, I believe you started your own company and now you’re living in Bangkok and you’re the treasurer of the local prostate cancer group.  You’re a McMillan volunteer.  You’ve done so many things.  How did it all about?  How does it all make you feel?

Daniel:             Well, all the things you’ve said are in slightly different order, but they were all true at one time.  I did, after diagnosis, then I started the blog, I had to decide whether to do the degree or not because I was diagnosed at the same time I had found out I had just got into the course.  I’m dying and I’m starting a degree which lasts four years.  What shall I do?  I thought, well, if I start the degree, it will be far too important to have to finish that.  There’s no way I’m going to die before the end of that.

Joe:                 Perfect.

Daniel:             I started the degree anyway.  Then in the final year of the degree, it was a wildlife and media degree.  I got the opportunity to move out to South Africa where my wife started a company, so I joined her out there.  I finished the last year of my degree there, but then she woke up one morning and looked in the papers and there was a job in Bangkok.  We ended up moving to Bangkok.  I never believed I’d live in Bangkok, but now I’d never want to leave it.  Once in Bangkok, I started to get really bored, nothing to do, so I started doing a bit of writing, voluntarily, really, for the Expat Life Magazine out here.  Then I started doing a bit of proofreading and copywriting, then I started my own website.  Now, it’s just gone on and on from there, now, I’m even on an advisory panel at the Ministry of Education in Bangkok now.

Joe:                 That’s fantastic.

Daniel:             It’s really strange how I came from my life before diagnosis, which was mainly, well, I was in the military, followed by the aircraft industry, then the hotel trade for 20 years.  Being write, copywriter, proofreader, when my worst subject at school was English was really a strange outcome.

Joe:                 Daniel, did you finish the degree?

Daniel:             Yes, I did.  I got a 2.1, as well.  That was in spite of having surgery and having to have three months off in the first year when I graduated, I was with my wife, it was probably one of the happiest days in my life.  A day that I’d never thought I’d see a few years before that.

Joe:                 That’s amazing, I think that’s a great metaphor for cancer, that it’s an education all of its own, isn’t it?

Daniel:             It is.  I always have to say, if you survive it, because sadly some people don’t, and it takes them very quickly, but if you do, then it can be the best thing that could have possibly happened to you.  It sounds strange because it leaves you with other handicaps, as well, but it’s still, mentally, it’s just been great.  How can you say that about cancer?  It’s just been great.

Joe:                 Yes, that’s something you don’t expect to hear, right?

Daniel:             No, I even qualified as a language teacher, a salsa language teacher when I came to Bangkok.  Me, teaching English, you should see my school reports when I left.  I had an Irish mother and a Belgium Father, so there was never any hope for me.

Joe:                 There you go.  Daniel, if you had a minute with someone who recently got diagnosed with cancer, what would you tell them?

Daniel:             Well, the first thing I’d tell them is to be your own case manager, because I know we’ve covered this before, but don’t think that there is somebody out there that cares more about you than you do about yourself.  Start researching, know what you’ve got, know how to deal with it.  Other people can provide the skills, but you need to know what’s going on because without that knowledge, if you hide your head in the sand, then you’re leaving it to luck.  Whereas, if you become your own case manager, you not only stand a chance, but knowing what’s going on helps you to cope with it.  You can have an effect, you know?

Joe:                 Yes, I couldn’t agree with you more.  As soon as I immersed myself in cancer and I did my research, I went into the forums, I found out exactly what the probable outcomes are, what the treatment steps are, and what are my options, exactly, to the point where I knew exactly what was happening.  It not only really helped me in terms of my anxiety and my fear, and all of that, but it also helped me tremendously by going to see the specialist and asking informed questions.  Did you have a similar experience?

Daniel:             Yes, when I was asking my specialist questions, I think they were surprised at my knowledge.  Certainly, overnight, I knew more than my family doctor about prostate cancer.  The specialist, I think right now, I think I almost know as much as they do.  In fact, I interviewed a specialist in Bangkok recently for the Expat Life Magazine.  He was amazed at my knowledge, he offered me his white coat before I left.

Joe:                 What is, in your experience, the best way to do research?  Are there particular resources you would recommend online?  Is it going to the forums, maybe?

Daniel:             I don’t know what it’s like in Australia, but the UK prostate cancer charity has some great information on it and some really good links.  The forums, for me, that was the best place to go because you’re talking to people at all different stages.  Some of those guys are dying, sadly, but even the ones who are dying are passing you links to information that they’ve researched and it’s a massive wealth of knowledge between all of those people.

You go on there and you ask a question and it’s like having a hundred specialists immediately zap, here’s the answer.  When you get more knowledgeable, yourself, you find yourself helping new people coming onto the site who have just been diagnosed.  The forums, without a doubt, are the most helpful, were the most helpful things to me, especially in the early days when I knew nothing.

Joe:                 Yes, absolutely, the same for me.  I went to the testicular cancer forums and the guys there were so incredibly supportive.  They were sharing their stories.  Another thing that really, really helped me was, I don’t know if this happened to you, Daniel, but whenever I had any type of symptom, whether it was a headache, anything, I would immediately think, “This is cancer.”

Daniel:             A classic example here, shortly after diagnosis, I went out to Cyprus to have my last holiday, do you know what I mean?  My very last holiday because, hey, man, I was going to be dead next year.  On this holiday, I started to get a red rash between my leg and my scrotum.  This has never happened to me before and then it started on the other side.  I tried to phone the UK, to the hospital but they weren’t allowed to speak to you, at the hospital by phone overseas.  I don’t know.  Anyway, I was in a terrible state.  To cut a long story short, a few weeks down the line, I found out it was a condition called: Jock itch, which is just caused by bacteria in the sweat buildup between the leg and the scrotum.  To me, it was the cancer eating through my leg, you know?

Joe:                 Yes, exactly.  For me, what’s really helped me was if I put out something that’s ridiculous as my experiences on the forum, I would immediately get people sending me things, calm down, it’s something else, or whatever, right?  It was really supportive to know that almost within a matter of hours and sometimes minutes, there would be people answering my questions and that really enabled me to just calm down, take a step back and really put it into perspective, you know?

Daniel:             Yes, that’s right.  It helped, didn’t it?  Stuff like that, you don’t need to make an appointment and wait weeks to see a specialist and then by the time you have, that symptom is gone anyway, and you never knew what it was, but it worried the hell out of you.  You can get it instantly, just go on the forum, ask the question and they’re all there.

Joe:                 Absolutely.  Daniel, is there one particular thing that has helped you deal with cancer on a daily basis?

Daniel:             Now, it’s just being grateful to be alive every day.  There isn’t really one thing that occurs to me daily now, except other than having the gift of life still and just being grateful and wanting to help others not go through what I went through.  That keeps me going.

Joe:                 Yes, that’s fantastic.  If someone wanted to find out more about your journey and read your blog, what would they do?

Daniel:             They would just go on the link to: [email protected].  Not an easy name to remember.  They’d find me on Facebook, even, with the name: S-E-N-C-I-E-R, Daniel.  Even now, people contact me now who have picked up on my blog and asked me questions, not so much, once you’re seven years down the line, they want to talk to someone who’s still in the first year.  They’ve got more of an up-to-date experience.  People who are of a similar distance down the line, I’ve kept in touch with a lot of them.  A lot of us are still very lucky.

Joe:                 Thank you so much, Daniel.  You’re an inspiration.

Daniel:             Well, it’s a great pleasure to talk to you, Joe, and thanks very much for contacting me.  Pleasure to help.

Joe:                 Hey, this is Joe and welcome to Simplify Cancer Podcast.  Today, you’re going to hear from Daniel, who found a new meaning in life and a new way of life through prostate cancer, which is incredible, so check it out.  Daniel, thank you so much for coming and chatting with me.  I really appreciate it.  Daniel, I really want to start at the beginning and I really want to understand where you’re coming from with prostate cancer.  When did it all happen and how did you react when you first found out you had it?

Daniel:             I only found out because I was having annual checks because my father had died of prostate cancer, and I knew it ran in families.  I just went for an annual PSA check, never expecting it to be that at all, but yes, one of the times I went, and my doctor said, “We need to look at this a bit more.” I wasn’t outside the limits, I was still 3.6, which is one inside the 4 in the UK that you have to breach before they send you to a specialist.  He said because it had gone from, well, it had doubled within about a year, so even though it had gone from 1.8 to 3.6, normally, I wouldn’t have been seen, it would have been classed as okay by a less experienced doctor.

Joe:                 Yes, how did you react?  What was going through your mind?

Daniel:             When I was given the news?

Joe:                 Yes.

Daniel:             Well, I skipped into hospital that day because I had just been accepted onto a University degree, a four-year course.  I thought, wow, this is going to be amazing.  I didn’t even have test results on my mind because that’s all I was thinking of.  You know, at the age I was at then, you’ve been back to your doctor and the hospital so many times for your test results, and it’s so boring, isn’t it?  They say, “Yes, everything’s fine, Daniel, come back next year.” I just sat down for more of the same.  “Unfortunately, you have got prostate cancer.”  You know, when you see in the films, when someone’s given news, and all the background goes blurred and the sound goes off?  I thought, god, I’m having a stroke.  It was just like that.  Everything just went fuzzy and I couldn’t hear his words and his words started to fade out, all I was thinking of was, my god, I’m dying.  A child of the 60s, so cancer equals death.  There wasn’t any other scenario really.  Looking back, I needn’t have been as worried at that stage.  At the time, it was pretty shattering.

Joe:                 Absolutely.  I remember that’s what happened to me, as well.  The whole world came to a stop and everything was in slow motion and the whole sound was muffled.  It was just bizarre.  Yes, I remember I was sitting at the urologist’s office and nothing made sense, it just didn’t connect.

Daniel:             That’s right.  I left that day with a pile of leaflets and the worst thing that day I left with was this 24-hour helpline number.  I looked at that number and it was like, “having a connection with god,” at least I can ask anybody, anything, anytime I want.  I took that number home.  The first time I rang it, it went onto an answering machine.  Voicemail.  I thought, wow, so I tried it a few more times.  About the fifth time I tried it, there was nothing.  At a later date, I found out there wasn’t actually anyone manning it, and the tape had actually run out because it was the weekend.

Joe:                 No.

Daniel:             Would you believe it?

Joe:                 That’s ridiculous.

Daniel:             There’s me wanting to get in touch with someone who knew what was going on inside of my body.  It was a blooming machine on some specialist’s desk.

Joe:                 That’s horrible.  Wow.

Daniel:             That was all part of the enquiry six months down the line, when I ended up holding a protest outside the hospital because I had no treatment of any kind for 18 months.  I’m convinced they were just waiting for me to die, you know?  Why else wouldn’t they give someone with Gleeson seven prostate cancer, why wouldn’t they give them any treatment?

Joe:                 What happened?  Why weren’t you treated?  What’s the story with that?

Daniel:             I was in a system where I was just floating along, and no one really knew where I was up to or what anybody else was up to.  It was a broken system, an admin system mainly, but nobody was looking at anybody and to this day, when you’re diagnosed with cancer, you think some great NHS machine is going to jump into action and they’ll know exactly what to do at every step of the way.  Nothing like that.  It was just, I was floating down a river, at the end was the waterfall of death and nobody knew I was there.  It wasn’t until I decided to hold a protest outside the hospital.  I’d never held one in my life, so I didn’t even know how to make a placard.  The hospital got to know about the protest and they did me the biggest favor ever in the whole campaign, which was to threaten to sue me if I went ahead with the protest.

Joe:                 That’s ridiculous.

Daniel:             I sent that to the TV, the national papers, the Daily Mail got involved and the BBC and as a result, we went ahead with the protest.  The whole hospital board resigned.  It was just chaos at the hospital.  There was a big enquiry.  It all just went crazy after that, you know?

Joe:                 Is that the time when you started a blog?

Daniel:             Yes, well, it was because I had already started the blog.  I could use that as evidence as to what had happened to me every day since diagnosis.  If you are diagnosed, start a blog, even if it’s only as a diary of events of what’s happening to you.  You can look back on that at any stage, either for your own personal benefit or for a surgeon’s benefit.  It’s a real record of what’s happened to you that doesn’t exist in the hospital system.

Joe:                 That’s a great point, Daniel.  I guess it’s also important for people in your life, your partner, your friends, your family, it’s just crazy.  What about your wife, how did she take it all?

Daniel:             My wife.  Well, from my perspective, she was in more of a state of shock than I was, and I was more worried for her than I was for me, really.  I think that’s pretty common to most men I’ve talked to.  Yes, she was just in terrible shock.  She was very supportive, and she was the main person I had talked to, but I don’t know if she’d describe it any differently.  Yes, in as just as much of shock as I was.

Joe:                 Did you feel that other people in your life, like your friends, people you maybe worked with before, or someone else, did you feel supported in the way that you wanted to be supported from them?

Daniel:             The friends bit, that was strange, because some people who had been friends for a long time suddenly disappeared.  Like, I’d only discovered I had a half-sister about three years before, we became very close.  When she found out I had cancer, I’ve never heard from her since.  It was like, “My god, he’s going to die, I’ve just found him.” She threw me in the bin really quickly and set fire to me.  Yes, most other people, people who were only acquaintances became a real support.  It was a mixed bag, really.  All the family were fairly good, but friends, I couldn’t believe some so good and some so bad.  I guess everybody deals with it differently.

Joe:                 Yes, it’s pretty shocking, isn’t it?  The same thing happened to me, as well.  Did you have any explanation to yourself, like, why people didn’t support you, that have disappeared from your life, as you say?  Why did that happen?

Daniel:             I think they were scared of losing me.  They didn’t know what to say, how to bring up the subject, they couldn’t deal with it, whereas, I was dealing with it, because you have to, don’t you?  They didn’t have to deal with it and it was a much easier thing for them to cross me off their Christmas card list.  That was their way of coping, I guess.  I don’t know if you had the same thoughts on that?

Joe:                 I think so.  Definitely there was a part that people probably couldn’t deal with it in a way, I think some of it was, it sounds ridiculous, but I think some of it is people might think of it as a disease, right?  Like, my god, you have it, I could catch it, too.  Not on like an intellectual level, but on a subconscious level, I don’t know if it makes any sense at all.

Daniel:             I think that’s right, yes.  I remember talking in the various forums about that type of thing.  Yes, it’s like when people get HIV, suddenly you become unclean.  Keep away from him, he’s got prostate cancer.

Joe:                 Yes.  Absolutely.  Your blog, was that something that helped you personally to deal with it all?

Daniel:             Yes, that was one of my main helps, actually.  It was my daughter Sasha who said, “Why don’t you start a blog?” Of course, my first question was, what’s a blog?  I didn’t know what a blog was.  She explained.  Once I started it, when I look back at the early posts, the writing is terrible and my progression in writing over the years in that blog led me to the job that I do now, because at first, it was just somewhere where I went every day and I knew that I could write down all of my thoughts, all of my worries, everything.  Once I’d done that, it was like I gained peace from it.  People would respond to the blog and reply to the blog.  I’ve always had a problem with stress until I realized that on a blog, if you write down stuff, it can relieve you from all of that stress, just by putting it on paper.

Joe:                 Yes, absolutely.  How did people find out about your blog?

Daniel:             I suppose I put it out on Facebook and places like that, to family and friends, but the main thing was when it was featured in the Daily Mail and also on the One Show in the UK, on the BBC, then it became big.  In fact, if the hospital hadn’t had threatened to sue me, my blog would still be a non-entity.  Whereas, as it is, by doing that, they turned it into a blog which has won two awards in America for best prostate cancer blog of the year.  I couldn’t have done that without that solicitor’s letter from the NHS.

Joe:                 Yes, absolutely.  What sort of comments did you get from people who also had prostate cancer, from maybe the partners or friends?  What was that like?

Daniel:             Yes, my friends were outraged at my struggle to get treatment.  I think they thought that I might be exaggerating at first.  Even I couldn’t believe what was happening to me.  There was just general outrage, but it was at a time when there were cases all over the country.  The NHS was slowly collapsing, as it is now still and in any collapse like that, there are victims, and I was becoming one of those.

The sad thing is, the people in the NHS, the top people who were running the trust, as they resign, they nearly always get great jobs in either Australia or New Zealand.  They get them all on duff references, as well.  When the woman who ran the trust where I was resigned, she disappeared, and I thought, “Well, she’ll never work again, obviously, she wouldn’t even meet me.” Then six months later, I found out she was the head of a trust in New Zealand.  I wrote to that trust and I said, you must have got references, surely.  The references that she’d given were reference from a previous job!  They didn’t even know she’d been there.  It was bizarre.

For a job so important, I wrote to the ministry of health in New Zealand and said, “Do you realize that there are so many of these guys failing in England, coming over and getting jobs with false references to New Zealand?” I didn’t even get a reply because I believe they are all stitched up in the same thing, you know?

Joe:                 Yes, wow.

Daniel:             There’s a big thing there that we’re all unaware of.  That was quite sad, really, because most of the people who resigned from the hospital after my case are now in very good jobs.  Not in England, of course.

Joe:                 With your story, did that bring about positive changes?

Daniel:             It definitely brought about positive changes, yes, whether they were lasting changes, I’m not sure.  I was a bit disappointed with the apathy around the whole system here, shown by the public, that they resigned themselves to the way things are.  If more people went to that hospital and started to shout about it, I think things would improve to the same extent that they did when I did that.  People are not willing to get off their bums and get out there these days.

Joe:                 What do you believe is at the root of the problem?  Is it the process?  Is it funding?  What was the problem?  Why was it all happening?

Daniel:             The problem was the administration.  I don’t think the problem was with nurses or doctors.  Doctors and nurses are not very good at admin, so they have an admin section that keeps everybody on track.  That didn’t really exist.  When I complained about that and they investigated it, there wasn’t really a process in place.  That’s why my most important message of all to anybody who’s diagnosed with prostate cancer is to become your own case manager.  Don’t think that there’s somebody out there who cares more about you than you do, because there isn’t.  If you imagine for one minute that there’s a system setup to look after you, then you’re going to be sadly disappointed.  Be your own case manager, number one rule.

Joe:                 That makes so much sense, Daniel.  Do you think that really applies to other areas in your life?  I guess the way that I see it, when you start to have cancer, I would say that you need to become selfish, selfish in a way that you have to put yourself first.  I think so many of us, especially men, we dedicate ourselves to a cause and put someone else first.  I think sometimes, it’s like being on a plane, where you have to put the safety mask on first.  I think we really have to put ourselves first in order to help others.  Would you agree with that?

Daniel:             I agree completely.  I was in the British Army and it was the number one rule.  That as soon as you come under fire, you protect yourself first, because if you don’t do that, you can’t protect others.  It’s exactly the same with prostate cancer.  If you’re dead, you’re not going to help anybody, but if you can survive this, like I have so far, you can be so much use to others, raising awareness and raising funds and counselling others.  It changed my life for the better.

Joe:                 You’re such an inspiration, Daniel.  With all those changes that happened with prostate cancer, and as you were going through treatment, I guess you made the choice to be proactive, the help others.  Can you tell us about all of that stuff that you started to do and how that helped you, as well?

Daniel:             I’ve always been the type of person who puts themselves out to help others, anyway.  It wasn’t as hard for me.  Along the way, I did meet people with a lot of different reactions, some people get prostate cancer, they stay indoors, they hide, and they die.  They don’t tell anyone, even.  It’s very much down to your personality, I think.  I was lucky in the way that I was an outgoing person, anyway, and I enjoy helping people.

When I was diagnosed with prostate cancer, it was just an extension of that, wanting to help people and it just flowed fairly naturally.  I do feel desperately sorry for people who can’t open up and can’t talk about it, that they’ll be like that in other walks of life, in other scenarios.  Not just prostate cancer.  The more open you can be about it, the more help you’re going to get and the more you’re going to be able to help other people.

Joe:                 What sort of similarities did you pick up on?  You’ve been around a lot of people with prostate cancer.  On the forums, you’ve met them face-to-face.  Did you notice some things people had in common in terms of their reactions, in terms of coping, in terms of going through treatment?  If so, what advice would you have for folks who are going through that sort of experience?

Daniel:             When they were diagnosed, everybody has almost identical experiences, the shock.  It’s after that initial experience that everybody had in common, is how you go on from there.  That’s how everybody branched out different ways.  There were people who dealt with it in the, “Hey, this is not going to beat me, I’m going to kick its ass” type person, down to the, “I’m going to go home now and lock the door and die.”

Everybody else was somewhere in between.  Most people, if they survived, it did change their lives for the better.  It gave them a whole new take on life.  I remember after I found I wasn’t going to die immediately, I went out into a wood and I started talking to plants and trees and touching them because I had never done that before.  I thought, “I hope nobody’s watching.” It’s going to be a white van that pulls up soon and takes me away.

I’d get down on the ground and look at ant’s nests and spiders and I just wanted to see everything so much more clearly because I had never done that before.  I thought I was going to die, and now I’ve got a bit of time.  I’m still in remission so many years later.  It does that, without that diagnosis, my life wouldn’t have been as rich.

Joe:                 Yes, absolutely.  Did that also make you reassess your life before cancer?  Did you start to look at things in a different way?

Daniel:             Yes, I did.  I looked back on my life on some of the things I had done, a lot of the time I had wasted on stupid stuff, you know?  When I could have done far more positive things.  I suppose as you get older anyway, time becomes naturally more valuable.  A diagnosis of cancer along the way, if you survive it, can kick that process in earlier.  I think that’s just what happened with me.  I wasted too much time and I don’t waste any time now, yes, I’m thankful for that.

Joe:                 Absolutely.  Speaking about not wasting time, I know you made so many changes in your life, I believe you started your own company and now you’re living in Bangkok and you’re the treasurer of the local prostate cancer group.  You’re a McMillan volunteer.  You’ve done so many things.  How did it all about?  How does it all make you feel?

Daniel:             Well, all the things you’ve said were in slightly different order, but they were all true at one time.  I did, after diagnosis, then I started the blog, I had to decide whether to do the degree or not because I was diagnosed at the same time I found I had just got onto the course.  I’m dying and I’m starting a degree which lasts four years?  What shall I do?  I thought, well, if I start the degree, it will be far too important to have to finish that.  There’s no way I’m going to die before the end of that.

Joe:                 Perfect.

Daniel:             I started the degree anyway,  then in the final year, it was a wildlife and media degree,  I got the opportunity to move out to South Africa where my wife started a company, so I joined her out there.  I finished the last year of my degree there, but then she woke up one morning and looked in the papers and there was a job in Bangkok.  We ended up moving to Bangkok.  I never believed I’d live in Bangkok, but now I’d never want to leave it.  Once in Bangkok, I started to get really bored, nothing to do, so I started doing a bit of writing, voluntarily, really, for the Expat Life Magazine out here.  Then I started doing a bit of proofreading and copywriting, then I started my own website.  Now, it’s just gone on and on from there, now, I’m even on an advisory panel at the Ministry of Education in Bangkok!

Joe:                 That’s fantastic.

Daniel:             It’s really strange how I came from my life before diagnosis, which was mainly, well, the military, followed by the aircraft industry, then the hotel trade for 20 years,  then to be a writer, copywriter, proofreader, when my worst subject at school was English; a really strange outcome.

Joe:                 Daniel, did you finish the degree?

Daniel:             Yes, I did.  I got a 2.1, as well.  That was in spite of having surgery and having to have three months off in the first year. When I graduated, I was with my wife, it was probably one of the happiest days in my life.  A day that I’d never thought I’d see a few years before that.

Joe:                 That’s amazing, I think that’s a great metaphor for cancer, that it’s an education all of its own, isn’t it?

Daniel:             It is.  I always have to say, if you survive it, because sadly some people don’t, and it takes them very quickly, but if you do, then it can be the best thing that could have possibly happened to you.  It sounds strange because it leaves you with other handicaps, as well, but it’s still, mentally, it’s just been great.  How can you say that about cancer?  It’s just been great.

Joe:                 Yes, that’s something you don’t expect to hear, right?

Daniel:             No, I even qualified as a language teacher, a CELTA language teacher when I came to Bangkok.  Me, teaching English, you should see my school reports when I left.  I had an Irish mother and a Belgian Father, so there was never any hope for me.

Joe:                 There you go. Daniel, if you had a minute with someone who recently got diagnosed with cancer, what would you tell them?

Daniel:             Well, the first thing I’d tell them is to be your own case manager, because I know we’ve covered this before, but don’t think that there is somebody out there that cares more about you than you do about yourself.  Start researching, know what you’ve got, know how to deal with it.  Other people can provide the skills, but you need to know what’s going on because without that knowledge, if you hide your head in the sand, then you’re leaving it to luck.  Whereas, if you become your own case manager, you not only stand a chance, but knowing what’s going on helps you to cope with it.  You can have an effect, you know?

Joe:                 Yes, I couldn’t agree with you more.  As soon as I immersed myself in cancer and I did my research, I went into the forums, I found out exactly what the probable outcomes are, what the treatment steps are, and what are my options, exactly, to the point where I knew exactly what was happening.  It not only really helped me in terms of my anxiety and my fear, and all of that, but it also helped me tremendously by going to see the specialist and asking informed questions.  Did you have a similar experience?

Daniel:             Yes, when I was asking my specialist questions, I think they were surprised at my knowledge.  Certainly, overnight, I knew more than my family doctor about prostate cancer.  The specialists, I think right now, I almost know as much as they do. In fact, I interviewed a specialist in Bangkok recently for the Expat Life Magazine.  He was amazed at my knowledge, he offered me his white coat before I left.

Joe:                 What is, in your experience, the best way to do research?  Are there particular resources you would recommend online?  Is it going to the forums, maybe?

Daniel:             I don’t know what it’s like in Australia, but the UK prostate cancer charity has some great information on it and some really good links.  The forums, for me, that was the best place to go because you’re talking to people at all different stages.  Some of those guys are dying, sadly, but even the ones who are dying are passing you links to information that they’ve researched and it’s a massive wealth of knowledge between all of those people.

You go on there and you ask a question and it’s like having a hundred specialists immediately zap, here’s the answer.  When you get more knowledgeable, yourself, you find yourself helping new people coming onto the site who have just been diagnosed.  The forums, without a doubt, are the most helpful, were the most helpful things to me, especially in the early days when I knew nothing.

Joe:                 Yes, absolutely, the same for me.  I went to the testicular cancer forums and the guys there were so incredibly supportive.  They were sharing their stories.  Another thing that really, really helped me was, I don’t know if this happened to you, Daniel, but whenever I had any type of symptom, whether it was a headache, anything, I would immediately think, “This is cancer.”

Daniel:             A classic example here, shortly after diagnosis, I went out to Cyprus to have my last holiday, do you know what I mean?  My very last holiday because, hey, man, I was going to be dead next year.  On this holiday, I started to get a red rash between my leg and my scrotum.  This has never happened to me before and then it started on the other side.  I tried to phone the UK, to the hospital but they weren’t allowed to speak to you, at the hospital by phone overseas.  I don’t know.  Anyway, I was in a terrible state.  To cut a long story short, a few weeks down the line, I found out it was a condition called ‘Jock Itch,’ which is just caused by bacteria in the sweat buildup between the leg and the scrotum.  To me, it was the cancer eating through my leg, you know?

Joe:                 Yes, exactly.  For me, what’s really helped me was if I put out something that’s ridiculous as my experiences on the forum, I would immediately get people sending me things, calm down, it’s something else, or whatever, right?  It was really supportive to know that almost within a matter of hours and sometimes minutes, there would be people answering my questions and that really enabled me to just calm down, take a step back and really put it into perspective, you know?

Daniel:             Yes, that’s right.  It helped, didn’t it?  Stuff like that, you don’t need to make an appointment and wait weeks to see a specialist and then by the time you have, the symptoms are gone anyway, and you never knew what it was, but it worried the hell out of you.  You can get it instantly, just go on the forum, ask the question and they’re all there.

Joe:                 Absolutely.  Daniel, is there one particular thing that has helped you deal with cancer on a daily basis?

Daniel:             Now, it’s just being grateful to be alive every day.  There isn’t really one thing that occurs to me daily now, except other than having the gift of life still and just being grateful and wanting to help others not go through what I went through.  That keeps me going.

Joe:                 Yes, that’s fantastic.  If someone wanted to find out more about your journey and read your blog, what would they do?

Daniel:             They would just go on the link to: [email protected].  Not an easy name to remember.  They’d find me on Facebook, even, with the name: S-E-N-C-I-E-R, Daniel.  Even now, people contact me now who have picked up on my blog and asked me questions, not so much, once you’re seven years down the line, they want to talk to someone who’s still in the first year.  They’ve got more of an up-to-date experience.  People who are of a similar distance down the line, I’ve kept in touch with a lot of them.  A lot of us are still very lucky.

Joe:                 Thank you so much, Daniel.  You’re an inspiration.

Daniel:             Well, it’s a great pleasure to talk to you, Joe, and thanks very much for contacting me.  Pleasure to help.

In this episode, I’m talking to Darryl Mitteldorf who shares what is unique about men facing cancer and other insights and perspective from helping folks as the oncology social worker. Darryl goes above and beyond to help men who face cancer as well as the gay and lesbian community in dealing with cancer through many innovative projects delivered by Malecare, organisation founded by Darryl. Here’s what you going to find out in this interview:

Malecare

LGBT Cancer Project

Cancer Match

Cancer Graph

Health Unlocked

Joe:                 Hello, my friends.  This is Joe Bakhmoutski and welcome to Simplify Cancer Podcast.  Today, we’re going to hear from Darrel and his insights through the years he spent doing oncology social work.  He has done so much incredible stuff, with helping the gay and lesbian community deal with cancer, helping the underprivileged.  He created this amazing dating website for people who had cancer, and he’s had so many other great projects.  Truly, Darrel is a voice that needs to be heard, so check it out.  Darrel, thank you so much for doing this.  First, I want to start with, I want to really ask you, why did you become a social worker and how did you become involved in oncology?

Darryl:              A thousand years’ ago, when I was younger, actually, I think about 34 years’ ago, I actually left college and started working in banking.  Made a lot of money in that, then took a year off, like a delayed gap year to travel around.  I volunteered in a couple of refugee resettlement camps and camp back to the States where I live.  I thought, what better way for me to spend my time?  A friend of mine clued me into social work as a profession.  Her husband was HIV positive and finally died from that.  She became a social worker and I just followed her to the university that she went to, NYU.  Yes, it all started from there.  A very gratifying career.

Oncology, though, my dad was diagnosed with prostate cancer a few years after I had become a social worker.  I started looking into that.  There’s been a lot of unsettled work around psychosocial issues in oncology and cancer survivorship.  I thought, rather than focus on refugees or HIV or the old stuff, where it’s already overpopulated with social workers.  In the late 1990s, there were really very few American social workers looking at cancer survivorship, so I thought that could be a place I could be innovative and make a contribution to the field.

Joe:                 Yes, absolutely.  That’s quite a change from banking into social work.  It definitely feels like it’s very personal, you’re so involved.  What drives you on, Darrel, what do you want to achieve in what you do?

Darryl:              It’s partially revenge.  Cancer took my dad’s life and the lives of a lot of people in one sense.  It might even take mine one day, so far, I’m lucky, but who knows?  It’s a field where you can really see tangible results, with drug addiction or refugee resettlement, you never really know what’s going to happen with a patient after you’re through with them.  With cancer, they’re either happy or sad.  The work that I do has very little to do with helping people live longer, but it has everything to do with helping people to live better and be happier in spite of their diagnosis and in spite of all the stressors of the stating treatments that they have to undergo.  It’s a very warm and fuzzy feeling I have every day when I can see the work that I’m actually doing play a big part in people’s lives.

Joe:                 Absolutely, Darrel, that’s fantastic.  You’re obviously doing some fantastic work, specifically working with men, Darrel, what’s different about men facing cancer?  Do we have different needs?  Do we express things differently?

Darryl:              No and yes.  No, we don’t have different needs, in that, we want to not be diagnosed with cancer, that we want to not need to be treated and we want to live rather than die.  The differences are more in the realm of concrete stuff.  Like it or not, in 2018, men are still the primary income creators of a family or if they’re living by themselves, they’re taking care of themselves.  Most of society around the world is still patriarchal, there are very few matriarchal societies.  There’s a certain sense of: I have to take care of this, that women diagnosed with cancer don’t feel.  Then there are myths around this.  Like, men don’t speak about cancer or men have to be strong and not admit that they’re ill and such.  Over the 20 years that I’ve been working with men and cancer,

I’ve just found that not to be true.  People talk about it a lot and people will use that as an excuse to not treat men equally, as well as they treat women with cancer.  In fact, men cry just as much as women do, men get depressed, men express themselves when they’re asked to.  The problem with me is, it’s not so much that it’s a man who has cancer, but it’s the way people react to a man with cancer.  It’s more likely that any male or female doctor will speak to a woman and ask her how she’s feeling.  It’s rare that a male or female doctor will ask a man diagnosed with cancer how he’s feeling.  That, I think, are some of the critical differences.

Joe:                 Yes, definitely.  They always assume that you don’t want to talk about it.

Darryl:              Yes, in fact, why am I sitting here if I don’t want to talk about it?  I’m in your office, I’m paying you an amazing amount of money, either through insurance or out of my pocket.  I’m here, you be here, too.

Joe:                 Yes, absolutely.  I guess from experience, I can say that most people feel completely overwhelmed when they’re facing cancer.  What advice would you give to someone who’s going through it right now?

Darryl:              You’re human, feel whatever you’re feeling.  It’s ridiculous to say to someone, “Feel better than you do or feel X, Y, or Z” because that’s your idea of the best thing to tell them, or the best thing for them to feel like.  Somebody just told you, you have a good chance of dying sooner rather than later.  Your reaction is just as valid as anyone else’s.  The second thing is, after you get through those feelings, then you have to figure out what you want to do about the cancer itself.  It’s a disease and it’s real.

We’re still in medieval times when it comes to treatment.  There are no real cures for pretty much all of the cancers that are out there.  There are only things that we can do to delay the onset of death.  That’s really a good way to think about it, how to turn cancer into a chronic disease, rather than a deadly disease.

Joe:                 Absolutely, Darrel.  One thing that’s helped me is going onto specific cancer forums.  I’ve been on testicular cancer forums a lot and I’ve been asking about symptoms and I’ve been asking all kinds of things about how this affects my sex-life, and everything else.  It’s been incredibly important.  I found that immersing myself in facts, immersing myself in information has tremendously helped me to deal with it better.  Do you notice, in the work that you do, that this kind of understanding, I think what you just mentioned, understanding the facts, understanding treatment, understanding what’s going on around you can help you to deal with it better?

Darryl:              Completely.  When you’re in the dark, you stumble on things, when you’re in the light, you can find your way through things.  That sounds like a silly cliché, but I think it’s very truthful around understanding cancer.  Where is the person who really understands what cancer is about, unless you went to med school or something?  To know something that relaxes you, takes a lot of tension off.  Then that gives you the tools in order to talk to your doctors.  Like, when you had testicular cancer, I’m guessing you had more than one doctor.  I’m guessing you also had nurses and oncologists and all sorts of people playing out in your lives.

Then you had people telling you, “Did you talk to this or that?” Then you had the online communities perhaps suggesting X, Y, or Z.  To be able to feel confident in your own treatment choice-making is really a big deal.  Also, it gives you the sense that you did the best you could, no matter what the outcome is.  When your head is on your pillow for the last time, you shouldn’t feel a sense of regret that you blew an opportunity or something, you should know you did the best you could, it’s unfortunate that we’re not in the year 3018 instead of 2018.  We just have the tools that are available for us today to fix ourselves.  They’re not all that great.  We do the best we can.

Joe:                 Yes, absolutely.  You mentioned the pressure on the man to the primary welfare provider.  What advice do you have on dealing with that sort of pressure?

Darryl:              It’s pressure.  There’s not really much you can do about it.  Cancer is expensive.  There’s no cheap way to deal with disease and cancer is one of the most expensive diseases to treat.  Financial toxicity is as much a side-effect from cancer as being bald or feeling fatigues.  When you don’t have the money to take care of yourself or your family, or when you’re put in a horrible position of having to choose, do I pay for this drug versus put food on the table?  That’s a stressor that there’s just no way around.

Definitely here in the United States, where we don’t have national healthcare and such.  Where many people who are economically deprived or don’t have large incomes, that are really just dying sooner rather than later because they just don’t have the cash to pay for treatment.  With our current administration, obviously, it doesn’t look like that’s getting any better.

Joe:                 Yes, absolutely.  What do you think about the support that folks expect to get from their family, their friends, from people around them, maybe their co-workers?  Do people generally get the support that they need?  Could they do something differently to maybe speak up, to get better support?

Darryl:              Yes, certainly, pretty much everyone around you will either stick with you or they’ll run away.  It’s usually one or the other.  It’s rare that someone’s in the middle ground.  The ones that run away, don’t chase them.  They’re wherever they are and they’re not going to be helpful to you, they’re dealing with whatever’s going on for them, as a consequence to you being diagnosed with cancer.  The ones that are with you, they’re your friends, they’re your family, they’re not doctors.

They’re not going to know what to say or how to make you feel better, except in the sense that they’ve done that well in the past.  If you had a friend who was soothing during a relationship that went wrong three years, or helped you through a broken leg, that’s probably a friend who will know how to talk with you around cancer.  If you have a family member who wakes up an extra hour early to help you get to the toilet or whatever, that’s somebody who’s useful.  No one is ever going to be perfect.  If you do ask somebody who absolutely knows the best things to say and is the most comforting creature on earth and all of that.  Either that’s your dog or that’s an extraordinary person in your life.  We’re all people and we all have human reactions to hear about cancer.  There’s no right or wrong about it, it’s just the way it is.

A lot of people live alone.  In the United States, it’s like 49 percent of all adult males over the age of 40 live alone.  That’s extraordinary.  I didn’t know that until about two and a half/three years’ ago working on a research thing on being single and having cancer.  Loneliness is a consequence of cancer, as well.  Imagine living alone and then you have this disease that people say, “Who do you have to talk to?  Or who do you have to take care of you?” When you don’t have anyone.

Joe:                 That’s a staggering number, Darrel.  It kind of wakes you up a little bit.  I remember when I was on the forums and I was going through treatment and there was a guy there saying, “Look, I’m just about to start chemo, I don’t know what to expect, should I be freezing meals and putting them in my freezer because I live by myself and I really don’t know whether I’ll be able to get out of bed and just buy basic groceries.” I remember that shocked me.  I thought, people are dealing with cancer and treatment on this level, where it’s loneliness.

Darryl:              Yes.

Joe:                 Darrel, when we flip that around and if we talk about the caregivers, like, I guess if you’re a partner or a close friend and it’s someone in your family, because it’s really tough for them, what can you do to make it easier for them?  How can you help them through this time which is incredibly stressful?

Darryl:              There are two answers to that.  One is, so what?  It’s like, now’s your time to be selfish, at least for a small part of your diagnosis, certainly the early days you should be, or you have the permission to be selfish.  It’s a good question, especially for people with children.  I mean, young children, like, nine/ten-year-old’s, what do you say or not say?  There are no clear answers to that.  The thing to suggest to people is, what kind of situations did you have that were somewhat similar or were remotely similar and how did you behave with your kids or your family members then.

Then just repeat that with a higher context of having cancer.  Really, there’s no clear answer to that.  Family members, the dynamics of your family and friends hasn’t changed from the day before your diagnosis, to the day after.  In the sense that, if you didn’t like them then, you’re not going to like them now.  If they didn’t like you, they’re not going to like you any better because you’re diagnosed with cancer.  Cancer diagnosis happens within the middle of many changing changes in relationships, both with kids, as well as adults.

All of this returns to the fact that we’re human.  There’s a certain relaxation about that, that you’re not going to get this right or wrong.  You’re just going to flow through it.  The better posture is to understand you’re going to make mistakes with everyone, but that’s okay because there’s no rulebook around this.

Joe:                 Yes, absolutely.  I love what you said about being selfish, I completely agree with that.  It’s something that I’m almost afraid to admit to myself, but this is a good thing to be.

Darryl:              Yes.  Being selfish is also a way to being very clear as to what your needs are.  One of the problems that caregivers have is not knowing what the diagnosed person actually really wants or needs.  If you’re 100 percent selfish, you’re very clear as to what you need.

Joe:                 Yes.

Darryl:              That helps the other person, who will either decide, “Well, I’m going to help this person out or I’m going to think they’re an ass and walk away.” Clarity is a good thing.  In most cases.

Joe:                 Yes, absolutely.  Darrel, what are some of the other challenges that typically get overlooked when we talk about cancer?

Darryl:              Well, money we talked about, emotional life in terms of feeling loved, even if you live alone to know that you love yourself, that you didn’t cause your cancer.  I think one of the big things around cancer is that I make my own cancer.  That’s kind of rare.  If you live in a toxic wasteland or in Chernobyl, yes, you did screw yourself, sorry about that, but you did.  Rarely, somebody caused their cancer.  That’s important to know and to feel comforted by, that you didn’t do it to yourself.  Well, 20 years’ ago, I started the field of LGBT cycle oncology.  Nobody had been looking at gay and lesbian cancer survivors.

Many doctors were asking, what did they do to cause their cancer?  As if gay and lesbian patients did something different than straight patients around cancer diagnosis.  The obvious thing around prostate cancer, did the anal receptive sex cause your prostate cancer.  I can point to half a dozen urologists today that believe it does, including a very well-known one in Washington.  That’s crazy but people will take their prejudices and insert it into their specialties around cancer.  The sense of blame or blaming is probably one of the least talked about and most-toxic aspects about being diagnosed, I think.

Joe:                 Yes, absolutely.  What is the reality like, if you’re gay and lesbian, I guess if you’re a gay man and you have prostate cancer, what is that reality like and what would you say to that person?

Darryl:              Well, it’s hard to talk to your doctor, basically, you have to find a way to either have a doctor that you’re very cool with or you have to find your own strength to say, “I enjoy sex with other men, what will my life be like after treatment?  What will my sense of identity be like?” Since most prostate cancer treatments cause impotence or remove sex drive.  What will that be like for me as a man who enjoy sex with other men, since I’ve basically been out as that identity?  One of the treatments for prostate cancer is quite similar to the punishment that gay men used to receive in the 40s/50s/60s, which is to take androgen deprivation therapy and to basically have your testosterone removed, so you’re basically chemically castrated.

Now, it’s a treatment for advanced stage disease and pretty much everybody welcomes that because it seems to have a good effect and adds a couple of years to your life, but imagine being a gay man and saying, “Here’s this treatment that, if you were arrested in the 1960s, we’d offer it to you, as well”?  There are all sorts of weird things around that.  I fail to understand how in 2018 we can have so many doctors who a, don’t care enough to learn more about their gay patients, and two, are just afraid to speak to their gay patients and ask them, what do you need from me?  What kind of sensitivity or treatment or what better explanations for treatment do you need from me?  On one hand, it’s good that the field of LGBT oncology is growing.

It’s big in Australia.  Prostate Cancer’s Foundation of Australia is very, very good around gay men.  There are a couple of universities that we hear male care work with that have fairly strong research.  We can tell gay and bisexual men and transgender women, that there’s science behind a lot of what we now know around gay and lesbian survivorship.  It’s still a decade or two away from being a fair and equitable medical treatment for LGBT cancer survivors.

Joe:                 Yes, absolutely.  Darrel, please tell us about your LGBT cancer project, what’s that about and what are some of the issues that really need to be spoken about out loud?

Darryl:              The LGBT cancer project started in late 2004.  It’s literally the world’s first non-national, non-profit organization or NGO focused on gay and lesbian and transgender and bisexual cancer survivors, from a patient’s point of view.  There are many cancer-focused organization, from Live Strong and Prostate Cancer UK.  You could name a thousand.  This was literally the first in the mid-2000s.  Imagine how long it took to get there.  That it took me, which, really, I’ve never been an activist in the gay community, it took me until my 30s to put that together.  It was something that people disliked me for initially.  Now, it’s been replicated in the UK and a number of other countries.  I think the value of it is obvious.  It’s necessary.  The LGBT cancer survivor community needs an organization that can provide both advocacy and the marketing of the idea that it’s this unique niche of people that have particular treatment needs.

Joe:                 Yes, obviously, a lot of the folks you deal with, they feel that they’re in trouble.  Is there a story, Darrel, that has really hit home the most for you?

Darryl:              They were all poignant.  I’m still flattered and like the idea of when somebody writes and email saying, “Thank you” and this and that.  That’s highly gratifying and encouraging.  Not just for me, but I don’t work alone, but a lot of people that work with me, not just in our organization, but there are lots of other organizations that have similar programs now.  Nothing really strikes home in the sense that I don’t want to say one person’s extraordinary story is more important than another person’s banal story.

They’re all important because we’re all individuals that have stories.  They’re all worth hearing, whether it’s like, “Thank you.  I learned about a particular drug that was helpful.” Versus a story where a lesbian couple fighting their way through a hostile system, so that one could visit the other, in the same way that a heterosexual man and wife could visit.  We actually had a couple of them like that.  They’re all important stories.  That’s how it should be.  Stories are good for fundraising and good for media and this and that but, in fact, everybody, individually, has the same value and I think that in itself is the main story that we want to tell, is that everyone is important.

Whether you’re going to die in three days in complete agony or you have a manageable disease that you’ll die from a heart attack when you’re 100.  If you’re diagnosed with cancer, you’re not in a good place.  That’s important for both ends of the spectrum.

Joe:                 Yes, I guess the thing that rings through from what you’re saying is equality.  People want to be treated differently in all walks of life and that includes cancer, right?

Darryl:              Yes, everyone is different.  Whether you’re in a refugee camp in Rwanda or in Syria, or you’re in the highest income neighborhood in New York City.  It’s not that you’re in a better situation or worse situation, it’s that you’re in a different situation, with different needs and different abilities to access healthcare, and a different understanding of what healthcare is.  Cancer is cancer for everybody.  It may be slightly understood better here or there and certainly there are different levels of intelligence among people.  Somebody who went to Harvard law school is probably going to be able to read stuff better than somebody with a third-grade education or something.  That obvious stuff aside, everybody is the same, you don’t want to hear that you got a disease that can kill you.

Joe:                 Yes, absolutely.  Darrel, I don’t know if you also started Cancer Match, which is a dating site for cancer survivors.  It got me thinking that my partner was really incredibly supportive for me, but not everyone is so lucky.  Like we talked about, one way or another, folks end up in the position where they want to meet someone who really gets them, who they love.  You must have really also felt strongly about that, to start Cancer Match.

Darryl:              Yes, it’s basically a dating site for cancer survivors.  Cancermatch.com.  Also, cancermatch.org goes there, as well.  The idea that when you’re dating, you sit down, and you tell the person opposite you, “I do this, I do that.” You tell them you have cancer, that’s like, “Where’s the check?  I got to go to the toilet and never see them again.” When you have two cancer survivors dating, you both know that when you say you’re feeling nauseous, it’s not because they look bad tonight, it’s because you’re feeling noxious, or you have a headache or something.

Or, imagine a date where you go to the doctor together and you hang out in the waiting room.  You find different strategies to enjoy your lives together.  That was the original idea.  You know, that you don’t have to explain so many different things that are scary to people who are not diagnosed.  It’s worked out brilliantly.  We’ve had marriages out of that thing.  There are usually about 800/900 people that are active every day and every year, there are about 8,000, or 9,000 last year, new people signing on.  It’s not the largest dating site in the world.

Joe:                 Thank god for that.

Darryl:              Yes.  Nice to be here, sorry you’re here.  Yes, it’s super cool.  If that were the only thing I did in my life, I’d be very happy.

Joe:                 That’s fantastic.  Darrel, tell me about Cancer Graph, how did this come about?  Why do we need it?

Darryl:              Cancer Graph is a mobile app.  It’s 13 months’ old now, we launched it in January of last year.  It came from the idea that symptoms and side-effects are hard to keep track of.  There aren’t symptom and side-effect recording apps, in fact, predated ours.  None of them were very easy to use.  None of them created a graph that showed the progression of symptoms, so you could visually see, “I had a toothache on Wednesday, Thursday and Friday.  Or I was feeling nauseous three days in a row”, or whatever.  What it also does it, directly connect with your doctor.  If, indeed, you are nauseous three days in a row, your doctor can call you up and say, “You ought to drink some water because you’re at risk of dehydration.”

Believe it or not, that kind of app didn’t exist until I came up with it, actually, and we developed it here.  Now, it’s been used for a while, it’s been written about in peer-reviewed journals.  The Landslide had a really favorable article about it.  It’s in China.  We have to translate it in Chinese, Italian, a couple of other languages and some more to come.  It’s remarkable how Cancer Graph has taken hold of the world of cancer survivors.  Doctors are recommending it to patients and such.  When you sit with your doctor, the doctor hasn’t seen you for a month or two months and they say, “How are you doing?” You’ve got 30 seconds to spiel out what it is you’ve been feeling.

Instead, you can actually hand that doctor a piece of paper or have it sent directly to their office.  They can see, here are specific days, times, and locations where you’ve felt a very precise way.  I had a moderate sense of pain in my hip.  I had an extreme sense of neuropathy in my right hand.  My eyesight was fuzzy for three days in a row or something, three weeks’ ago.  You can’t remember that stuff.  Nobody is good at keeping diaries.  I have yet to meet anyone in my life that’s ever kept a diary.

I’m sure there is someone, but I haven’t met them yet.  The nice thing about Cancer Graph is, it’s designed so well that it literally takes seconds to record anything that you’re experiencing.  Mobile phones are in our pockets or on our bed strands or laying by our side, everything can be recorded easily.  Even if you blow off a third of what your experience is, you have two thirds of recordings to show your doctor.  Those things can be life-saving because they can moderate treatment.

You can change medications based on cancer prep.  Particularly around prostate cancer, we have urologists and oncologists telling us, they’ve modified treatment based on the findings from their patient’s cancer graph.  That’s super cool.  Yes, we’re happy about that.  Your audience can download it, it’s free.  It’s on iOS and Android.  It’s free for the world to use.

Joe:                 Yes, that’s fantastic, Darrel.  I know that if I had dollar every time I walked out of an oncologist’s office and thought, “I should have asked him about that symptom that I was feeling three days ago, that I completely forgot about.” Yes, that definitely would be a huge help.  That’s actually another way for people to find out about yourself and what you do with male care.  I know that this is how I stumbled upon your good self.  I actually read about Cancer Graph in the Cure magazine.  I thought, I’ll Google this Darrel guy and yes, that’s how I found out about you.  I go, wow, you’re doing so much more than Cancer Graph alone.

Darryl:              Yes, that’s interesting because I did not know it was written about in Cure Magazine.  We do get a lot of press on it.  I’m a social worker.  It’s not like we have a press office here, or anything.  I’ll look through that, or you could email it to me.  It’s good that you found it.  Finding information is so much better now than it was five or ten or 15 years ago.  Imagine being a cancer patient 20 years ago, before really most people had computers.  You’d have a book and brochure and that’s it.  Now, you have massive online communities.

We run one on a platform called: Healthunlocked.com, which everybody is welcome to.  We run an anxiety support community that has over 31,000 people on it.  That’s incredible.  It’s a way for our doctors to learn about us as patients.  To be able to look and see what people are talking about.  It’s not just that the communities make better patients, it makes better doctors if they took the time to look.

Joe:                 Yes, absolutely, Darrel.  I guess with all of this amazing work you did for male care and otherwise, all of these fantastic initiatives and projects.  It must cost a lot of energy and a lot of money.  How do you get funded?  Do you get sponsorships?  Do you partner up with people?  How does this work?

Darryl:              Well, all of that, but it’s the generosity of strangers.  It’s, like, people will donate.  I encourage your audience, obviously, to go to malecare.org and make a donation, but by serving people, people who have the wherewithal to be grateful, usually are grateful.  We have the usual corporate sponsorships like any other non-profit.  There’s no surprise there.  I think people will be surprised with how little influence that actually causes.  There’s always this idea if you take money from McDonalds, you’ll start pushing hamburgers or something.

                        Really, it doesn’t play out that way.  I used to joke, like, I can’t be bought by half a tuna sandwich.  I can’t even be bought by massive amounts of money because there’s really nothing to buy.  We don’t have really anything to sell.  It’s like when corporations offer us money, they like to be affiliated with an organization that does good things.  If it helps McDonalds to say, “We’re helping male care and look at how good our hamburgers are really good hamburgers.  Ronald McDonald is a really good guy or whatever.”

Yes, there’s nothing you can do about that.  It doesn’t influence anything.  Happy to take your checks, but really, most of our money comes from individual donations.  Some of them are quite large but more are like two and three-figure checks or donations by PayPal or whatever.  It’s not just one or two, it’s many thousands of those and they add up.  Then it gives us the privilege and honor to do these really good, great innovative things that help even more thousands of people.  Especially people who can’t afford to make donations.  All of our work goes around the world.  Also, we could not do this 20 years ago, or even ten years ago, it’s all internet bonuses, so to speak.

We can have free downloadable apps, like Cancer Graph, that all comes from individual donations from western countries or developed countries that are now benefitting patients in developed countries and underdeveloped countries, or undeveloped neighborhoods.  There’s plenty of poverty in Australia, United States, everywhere.  There’s a really good bonus to any donation done to an organization like Male Care.  We’re not the only one but I certainly think that we’re one of the better ones.  It’s an honor.

When people write a check, it’s their vote of confidence in what we’ve done and/or, it’s their gratitude for what we’ve done for them.  That just makes us cry with gratitude.  It’s genuine.  It’s really great.  Things cost money.  Writing code, I mean, Cancer Graph took two and a half years to make.  I did 78 iterations of it and algorithms are all you need, which is why it works so quickly.  That didn’t happen overnight.  A lot of people put in a lot of hours into that product.  Cancer Match takes a lot of moderation.  There are spammers.  Stuff, to get Play Stations, that you can then convert into bombs or something.

That’s another show and a different kind of show.  Being on the other side of a dating site or a community side.  It’s not just about Russian escort services.  It’s really like geopolitics and how to find romance.  A lot of these scammers are actually behind really bad organizations that are looking for funding to create products that kill other people.  There’s a lot of work involved in ferreting those guys in the now and protecting our genuine core community.  All of that stuff costs money.  Just because it’s time and then it’s electricity.  Our server stuff is one of our bigger expenses.

Joe:                 Yes, absolutely, Darrel.  That’s fantastic.  If someone wanted to really find out more about the project you just mentioned, the ones we just talked about or even something that we missed, perhaps, or even to participate if someone wanted to be a part of it or maybe to help fundraise?  What would they do?  How would they get in touch with you?  What sort of websites would they visit?

Darryl:              Malecare.org is a good starting point.  M-A-L-E-C-A-R-E.org.  It presents itself initially in English, but you can see at the top part of the screen that there are a lot of languages, I think eight or nine different languages that most everything is translated in.  Yes, however you got in touch with me, if you read about Male Care, you’re welcome.  We love email.  Being able to know what people want or what they’re suffering, helps us to figure out what to do next.  We’re not an insulated community or organization.  We actually reach out to people in focus group and make phone calls to people and say, “What do you need?” We don’t sit around waiting for people to tell us, but when people do tell us, that’s useful.  That’s helpful for everybody.  Yes, malecare.org.  M-A-L-E-C-A-R-E.org.

Joe:                 Darrel, thank you so much.  You’re an inspiration.

Darryl:              That’s very sweet of you to say.  Thank you.

In this episode, I’m talking to Mike Craycraft who turned the tables on his cancer diagnosis to transform it into a mission to help others. Mike is amazing because he puts in an incredible effort in running the Testicular Cancer Society and continuing support of folks joining the Testicular Cancer Forums. In the interview with Mike we get to hearing about:

Testicular Cancer Society

Testicular Cancer Forums

Dial It Down

Battle Scars

Joe:                 Mike, thank you so much for doing this.  I’ve been really looking forward to it.  Mike, can you please tell me about yourself?

Mike:               Sure.  My name is Mike Craycraft.  I’m a clinical pharmacist by trade and also a testicular cancer survivor.  I was diagnosed in 2006 and then founded the Testicular Cancer Society after my diagnosis just because there wasn’t a whole bunch of resources available back then.  I felt like with my survivor experience and healthcare knowledge, perhaps I could help make a difference.

Joe:                 Thanks, Mike.  I know that you waited for over seven months from when you first felt a lump in your testicle until you went to the doctor.  What was the time like?  What was going through your head?

Mike:               It was like a vicious cycle.  I would actually get hot flashes at night, so my scrotum would get loser and I could feel the lump.  I’d like, “I’m going to call the doctor in the morning.” I checked myself in the shower and I wouldn’t feel it and I’d go to work and I wouldn’t remember to call until it was noon, and the doctor’s office was closed.  Then I’d like, “Well, okay, after lunch I’ll call.” Then I wouldn’t remember again until six o’clock at night when the doctor’s office was closed.

Then it just became this vicious cycle of just delaying, delaying, delaying.  I had a whole bunch of things going on, obviously with the holidays, with Christmas, with New Years, my dad’s birthday.  I kept thinking, well, after this, I’ll go to the doctor.  I really don’t want to come home for Christmas and say, “Merry Christmas, your son has cancer.” The next thing I know, it was pretty quick that I realized that my delay probably had meant that I had metastatic disease and I convinced myself that I would die as a young man, to the point where I even threw my own going away party.  I went back home for our Thanksgiving holiday here in the U.S.  and asked a friend what bar I could have.

I’m going to rent it out and buy all the drinks and I figured in a couple of months, my friends would realize that I had cancer and was dying.  It was quite a hellish period for the seven months.  Just not sharing with anybody.  Not friends, family, doctor.  Just keeping quiet and literally living like I was dying.

Joe:                 Horrible.  It just drives you crazy, doesn’t it?

Mike:               It’s a very lonely period, yes.  I’m probably one of the few people that finally when the doctor said, “You have cancer”, I felt some kind of relief.  Most people were shocked, and I was just like, okay, I’ve known this.  You’re saying I’m going to live, well, great, can I get some money back because I just blew a whole bunch of money in the last seven months.  By the way, I didn’t get any back, so don’t do what I did.

Joe:                 Yes, absolutely.  Yes, you’re probably one of the very few people to say that.  I know that your mind just plays tricks on you.  I know that when I was, you know, I also had testicular cancer, and when I was in the shower and I reached down and I found it, I think the fact that really helped me was that I’m a complete hypochondriac, so thing I did the next day was I ran to the doctor immediately because I was 100 percent convinced that this was cancer.  Yes, I know what you mean about you touch it the next day and it’s not there and you start doubting yourself.  Your mind starts playing all of these crazy games on you.

Mike:               Yes.  It seemed like it just was a vicious cycle.  Some of it was fear, some of it was denial.  The biggest then, a whole churning in the cycle was really not wanting to upset others.  I knew I was coming home for Thanksgiving and my friends were getting married.  How can I ruin their wedding by telling everyone I think I have cancer?  How can I do it at Christmas or New Year’s, or my dad’s 60th birthday in January?  It just kept perpetuating.  Until, finally, I had a guy’s trip to Costa Rica to go surfing and I figured I wanted to learn how to surf and if I was going to die and people thought I was a surfer, maybe people would think I’d be cooler.  That was my last trip.  I said, okay, before I even leave, I’m booking an appointment for two days after I get back, so I had to go after I got back from that trip.  That was June.  It had started in October.

Joe:                 Yes, absolutely.  Once you found out that you had cancer, how did you break the news to your friends, your family, what was that like?

Mike:               Well, at first, before my orchiectomy, or before the test scores were moved and we knew 100 percent it was cancer.  I still kind of kept it quiet.  I said something to my parents.  I debated saying something to my sister.  My dad convinced me I should because if I didn’t maybe she’d think that I was hiding something from her.  Then literally right when I went in and the doctor first said I had cancer, I came back the next day and some friends of mine were playing music on stage and I ended up jumping on stage and making some ridiculous comment about: I’m pulling a Lance Armstrong and if anyone finds my testicle in the sand, to bring it back to me.

No one even got what I said, except for one friend who immediately started crying, knowing that I was saying that I had cancer.  Once the pathology came back, then it was open season, I didn’t mind who knew or anything else.  I just didn’t want to be that guy who maybe had a testicle removed and it came back normal.  Looking back, even then, who cares?  That’s great news.  Hey, you lost a testicle, great news, you don’t have cancer.  Once I got the official news, pretty much the flood gates opened.

Joe:                 How did people react?  Were they supportive?  Were they shocked?  What was that like?

Mike:               Well, I actually have a funny story for you.  I guess I was being annoying one evening and one friend drew a stick figure with these round glasses on.  It had these round glasses and they used to call me Smithers from the Simpsons TV show.  It was a stick figure of me with tire tracks running across it.  On the top, it said: Kill Smithers.  They all thought it was funny.  I didn’t know anything about it, they got these t-shirts printed up, not knowing that next thing I know I say I have cancer.  Now, they don’t know what to do with the t-shirts.  They ended up all putting them on and showing up to the beach bar one day and surprising me.  It was all literally fun and games after that.

My parents had travelled to Maine and came back right after my diagnosis with the t-shirt of some squirrels on a branch and a nut had fallen off, and there was a big pile of nuts on the branch.  It said: It’s all fun and games until someone loses a nut.  My mom gives it to me and asks, “Is this too soon?” It’s like, no.  Besides the humor, everybody was incredibly helpful, accepting.  All of those kinds of things.  I had a friend’s house that I stayed at for six weeks that year, because I would come back home to Cincinnati and stay with them.  People just bent over backwards to help.

Joe:                 That’s fantastic.  Is there anything in hindsight that you would have done differently?  What I’m trying to say is, waiting all of this time, that must have been excruciating.

Mike:               Yes.  That’s the biggest thing, looking back in retrospect, I’m glad I did it because I did have an experience that was unlike anyone else.  I also somehow lucked out and it was still stage one, which is pretty amazing.  Really, looking back, using some common sense, no, I should have gone to the doctor right away in October when I first saw the lump and really saved myself the mental beatdown that I gave to myself.  During that process, I also accepted the fact that I was going to die.  I didn’t want to die but I accepted it in my mind.  It was just as real as anybody with a terminal diagnosis.  I went through that process.  When I was going through it, I kept thinking, “I’ve had a pretty incredible life.”

Of course, people have had much better lives than I have, but other people haven’t.  When I was trying to figure out, why is my life so great?  It really came down to the people I know and the friends I’ve met.  It’s nothing spectacular about me.  It just really gave me a much grander perspective on life and what was important to me.  Everything worked out fine but if I wouldn’t have beaten myself up for the seven months, that would have helped, too.

Joe:                 Absolutely.  Now, that you’ve talked about back then, it’s really changed your perspective in terms of really appreciating the friends you’ve met and the people that you have in your life.  Has that been any different now all of these years later, now that you look back on it?  Has your perspective shifted?

Mike:               I don’t know that my perspective has shifted that much.  I do talk about every now and again I don’t share very often with people.  When I was first diagnosed, I said, “Well, I’m going to go live my life every day.” Doing what I do, running a non-profit organization, it’s not a woes me, I look up and I’m like, “I’m not really living my life every day.” I’m sitting behind a computer ten, twelve, fourteen hours a day, that’s not exactly a good work/life balance, I guess.  In that aspect, I probably need to improve on that balance nowadays.

Joe:                 What you’re doing now is really amazing because all of your non-profit work has helped so many people.  I think it’s a good time to talk about the fact that you founded the Testicular Cancer Forum and you’ve been maintaining it for ten years now?

Mike:               Well, I didn’t actually found it, it actually was started by a survivor and his buddy years ago.  I actually joined the forms in 2008.  Part of the testicular cancer society was we would tell people to go to the TC-Cancer.com forums because that’s where all the guys were.  There was no reason for us to have something with our name on it, to try to reinvent the wheel.  When everybody was already going there.  We were really huge advocates for that.  About five years ago, the forums were basically to the point where they were going to be shut down.  They had some technical difficulties and the people who started it had put a decade in, basically.

They came to us and I saw the value in it.  I would see guys come back years later on a questionable checkup or a second cancer or a relapse or a problem with hormone replacement therapy, or fertility questions.  I wanted to make sure that the legacy of the forums was there for those people, and all that gathered knowledge.  As well as new people coming.  We took them over about five years ago.  I’ve been on them for ten years no, but really only been the main oversight for about the last five years.

Joe:                 That’s so amazing, because I know that it helped me so much when I was looking for support, when I was looking for answers, to find people who were going through what you’re going through.  It’s amazing.  Thank you so much.  I guess I want to ask, what is your main motivation for not only keeping the forums going but also being so active.  You login almost every day and you post and you support people through it?  How do you keep it going?

Mike:               My goal overall was to always help the next me.  I know how I was in 2006, I know how the forums helped me.  If I can help the next guy in those ways, then it’s worth it.  It gives me pleasure to be able to do that.  I also feel, like I said before, I’m in a unique position, where I have the healthcare knowledge, where I can reach out to the top experts in the world and have a conversation with them that’s so in-depth that it would flabbergast people.  Then I could turn around, and being a pharmacist, be able to communicate back down to the person’s level that was just diagnosed, which not a lot of healthcare professionals have that ability, to really relate to the public, per say, with the information.

Also, with the feelings.  Sometimes it gets difficult, sometimes you lose some empathy along the way.  Overall, no, you stop for a second and think, “Yes, this person, they’re in the exact shoes that I was.  I remember how that feels.” Taking two minutes to reply to them really can help make a difference.

Joe:                 That is another thing that I really noticed on the forums, is that everyone is so supportive, even if the same questions from guys come up, because people go through the same things.  People, like you, like so many others, just respond in such a great, such a positive way, as if it’s the first time that anyone has posted in there.  I think that’s so fantastic and I can’t encourage people any more than I’m trying to do now.  What I want to encourage people is to always go to forums, like the testicular cancer forum, because I think you get so much incredible value and support out of it.

Mike:               Nowadays, there’s a lot of testicular cancer groups on Facebook, which is great.  You can get almost instantaneous reaction.  The forum sometimes is a little slow as far as developing response.  What I think is really key about the forums is two things, one, they’re completely anonymous.  You pick your own username.  We’ve had situations where there’s been people on there that can’t use their real name, or don’t want to use their real name.  where, Facebook, you have to in these Facebook groups.

Secondly, it’s searchable and it’s permanent, where Facebook, if someone posted six months ago, it’s going to take you an hour and a half to scroll back down and find that information.  The forums kind of are an older technology, but I think they really are invaluable for what they are.  It’s a huge collection of experience and knowledge from real life.  That’s what people need.

Joe:                 Absolutely.  I think that the more resources that you have at your disposal, the better.  If I was talking to someone today who found out they had cancer, I would say, “Use every tool you can at your disposal to help yourself.  Read books, go to forums.” You mentioned Facebook groups.  I’m sure there are other resources out there.  I think people should use whatever they can, shouldn’t they?

Mike:               Yes.  There are plenty of people willing to help that have been there before.  I think the forums are really good because I think there’s a high level of education and experience on there.  Again, not belittling Facebook groups at all, but I’ve been on there and seen some responses and it’s just worrisome at some point, where when I’m going through the forums, I see every post.  I don’t always comment, because if I comment on every post, then it’s Mike’s forums, not the testicular cancer forums.  I don’t always interject.  I certainly do if I see something that appears to be misinformation.  It’s very rare when going through these forums that I even see that.

Joe:                 In the forums, just because there have been people who have been around for a while now and mixed with new people, it just makes much more of a community feel there.

Mike:               Well, I think it’s even a self-learning process.  Where if there’s a post and there are five responses, there might be 15 responses.  Six of them or ten of them are just out there.  They’re talking about one type of testicular cancer, when the person has a different one, or they just don’t totally have the grasp of knowledge that I think the people on the forums, because they’ve been there for a while and because it’s less absorbed and it’s absorbing good information back.  I just think the quality if much higher.

Joe:                 Yes, absolutely.  What would you say about, I definitely believe it really helped me to be really in the know about what’s going on at every stage of the way.  Yes, it was great to have, for example, my neurologist, then my oncologist, but it really helped me to combine that with also firsthand experience with people like yourself, and the forums, who really helped me learn so much more, all of this additional information, as well as perspective.  What do you think about that?  About people getting that mix of specialist knowledge but also real-life first-hand experience of people who went down that road before?

Mike:               Well, I think they go hand-in-hand.  When you’re going through the diagnostic process and you’re trying to get staged, having someone be able to say to you, “Well, the biggest key of information is a CT scan.  Then after that it’s going to be your tumor markers and then it’s going to come down to what the pathology actually says.” Also, being able to say at the same time, your pathology shouldn’t take any more than three days and your CT scan really should be ready tomorrow.  You can go get the information yourself.  It’s an anxious hurry up and wait period.  You’re rushing through everything and then you’re waiting for those results to come back, which can create an incredible amount of anxiety.

Especially if you don’t have a physician who isn’t on top of things and wants to move quickly for you.  They’ll say, “Okay, go get a CT scan, see me in a week.  Go do this, see me in a week.” It’s like, no, let’s see you two days from now.  Let’s hurry this up.  At least call and let me know what the information is, so I’m not sitting here fretting.

Joe:                 Yes, absolutely.  Mike, I remember in one of your posts, when you were talking about driving your friend to her cancer treatments, I think two hours each way.  Did you find it emotionally rewarding?  Was it tiring?  Was it draining?  What was it like?

Mike:               It was a friend of mine who relapsed with brain cancer.  Actually, it was one of the biggest pleasures of my life, she ended up passing away.  To be able to take her to her physical therapy or to her radiation treatments was incredibly rewarding.  As I mentioned, I put myself through that process of making peace with my life.  I feel like I was very well-able to help her along the way, as well.  It’s one of the best things I have ever done.  A two-hour drive each way was nothing, really.

Joe:                 That’s great, Mike.  I also remember there was this amazing post of someone, I think they were going through stage two or stage three of testicular cancer and they were ready to give up.  Their doctor said it was going to be too difficult to operate.  I remember that you recommended a specialist in a different city to get a second opinion and that person followed your advice.  They went through with the operation.  I remember they got completely over it.  That’s incredible, Mike.  How does that make you feel?  Being able to make such a difference to somebody’s life?

Mike:               It was pretty exciting when he sent the response back and filled us in with what was going on.  Yes, I guess he originally asked his oncologist to go to one of the two physicians that I recommended.  I believe I met both in person, but one I’m much more social with.  I knew that they knew their stuff.  I guess his physician did or didn’t, I don’t know.  He had a local surgeon; the surgeon wasn’t able to remove all of the cancer in his abdomen and sent him home to die.  He decided that, well, I’ve nothing to lose, I’m just going to contact the doctor Mike said.  Within two weeks, he was in the doctor’s office, Saul, that doctor/surgeon who was able to remove 100 percent of the cancer and he was cured.  He was amazed that the doctor, the specialist I mentioned was 700 kilometers away.  Which for a guy in the U.S.  you’re probably wondering why I said kilometers, it was because the patient was in Australia.

I recommended either one doctor in Melbourne or another doctor in Sydney.  To be able to do that, literally from the other side of the world, really was exciting for me.  Lucky with the American Society of Clinical Oncology that I’ve been over and got to meet these physicians at the annual meeting.  There’s also what’s called G3, the global germ cell group.  These physicians are a part of that, that I get the pleasure of going to those meetings, as well.  It just all worked out in an absolutely fantabulous way.

Joe:                 Fantabulous, that really is a perfect way to describe it, Mike.  Absolutely.  Mike, I know that sometimes people on the forum have clearly false alarms.  Does this annoy you or do you believe that the forum is for everyone, not just for people who are really sick?

Mike:               No.  The key is early detection and treatment.  If someone comes in and they feel a lump and it really from whatever they’re describing is a pimple on the scrotum and not a testicular cancer, they’re still scared.  They’re still worried.  We can’t really tell them that it’s a pimple on their scrotum and not testicular cancer.  Certainly, being able to guide them in to get to a doctor, to get checked out.  To hope they get a scrotal ultrasound is key.  There’s also really a healthcare anxiety.  You say hypochondriac, there is a huge anxiety and some people it takes a lot of convincing to.

Some people, their questions has been answered 15 times already this year, and they didn’t search through, but regardless, it’s okay.  They have a question, they need an answer.  If they would rather type it in and get an answer from everybody, that’s great.  It’s not just for those diagnosed.  It’s hugely for the caregivers, as well.  As you see, there are so many women who are on the forums.  It really is for everyone.

Joe:                 Absolutely.  Speaking of anxiety, I know of one thing that comes up for me, personally, is the fear of cancer coming back.  Did that happen to you?  If so, what would you recommend to someone dealing with cancer in terms of how they can deal with it in a better way?

Mike:               I don’t think the fear of it coming back ever really goes away.  I think it gets easier with time.  I know from my three-year checkup, which is a pretty big one for seminoma, I was reading through my CT results, I would always get my results before I went back into my doctor, so I would know what questions to ask instead of being shocked by what I’m told.  I was reading through, it said, interval increase in size is… and then it skipped down to the next line, not seen.  From the end of one line to the beginning of the next, I about crapped myself.  Thinking, interval is seen, instead of is not seen.  I worked with the radiologist, so I even made fun of him and said, “Listen, you’ve got to change your dictation so it all falls on one line, this is too nerve-racking.” Really, I think, as someone who’s diagnosed, having a realistic expectation of what your risk of relapse is I think is important.

Having knowledge of that.  I think a lot of guys don’t.  They don’t know what their risk of relapse is.  It’s stage one disease or after chemotherapy or after chemo and RPLND what the odds of it are coming back in the second testicle are.  They get a headache and they think, “It’s gone to my brain”, which would be extremely rare to occur without some disease in the abdomen and lungs.  I think that is key.  I think, really, for stage one disease, for example, taking a look at the numbers and seeing that greater than 99 percent of guys live for 15 years, survival rate.  It’s basically almost 100 percent cure.  If you look at the guys who actually had stage one testicular cancer that passed away, many passes away from alcohol as they do from testicular cancer and the treatment.  Many more pass away from other cancers, or cardiovascular disease or lung disease.

Our experience tells us the biggest challenge that we’ve had is our testicular cancer diagnosis.  I always look at it as, what is the next big challenge I’m going to face?  Yes, could this be the biggest challenge of my life so far?  The testicular cancer, I’ve always thought that.  Five months after my diagnosis, I got Dagny fever.  My odds of dying acutely from Dagny fever were much higher than dying acutely from testicular cancer.  I think putting in a perspective helps a little bit.  Knowing that they call it conditional survival.  For every two years you live, your odds of living the next two years go up, no matter what the stage is.  I think making sure you have a perspective is really key.  Then if there are anxieties, what can be done about it?  Is it something that’s affecting your daily activities?  Then you probably need to go talk to someone.

There’s also the new program that came out of Australia, the e-ct.org, that’s helping guys readjust to life after diagnosis.  That’s something that they can try.  Sometimes, I think the biggest thing is to realize that some things are normal.  A lot of guys can have anxiety because they have peripheral neuropathy and it’s a constant reminder that they’ve had cancer.  When they realize that, yes, just about everybody else who’s had chemotherapy has that, as well, it’s normal.  I think that can put the mind at ease a little bit, as well.

Joe:                 Yes, probably for yourself, I know that it does for me, going to the forum and seeing other people, I guess that helps put things into perspective, as well, right?

Mike:               Yes, it certainly does.  Saying that you’re not the only one that’s having these fears is big.  What’s really amazing to me right now is that the most recent research looking at survivorship shows that really the fear of infertility or being able to be a father is just as high and as severe as recurrence.  Which is flabbergasting because you would think, okay, well, just go to a fertility doctor and check your sperm count a year or two after chemotherapy.  Or at least put your mind at ease or confirm it.  That’s a lot simpler than getting over the fear of recurrence.  It’s amazing that those are the two biggest things that are really affecting survivorship, as far as really a fear and anxiety standpoint.

Joe:                 Well, that’s pretty amazing.  I didn’t know that.  Mike, what is your perspective on living a healthy lifestyle?  What would you recommend in terms of keeping in good shape physically, mentally?  Is it a diet, is it exercise?  What would you say?

Mike:               Well, as I mentioned before, testicular cancer survivors have a higher risk of cardiovascular disease, they have a higher risk of metabolic syndrome.  Certainly, leading a healthy lifestyle is never a bad idea.  Is it in the long-run going to make a difference with your cancer coming back?  No.  Is it going to keep you from passing away from complications or, like I said, cardiovascular disease, yes, certainly.  I think there are also limits to it.  There was a great book actually written by Matthew Carr, out of Australia, called: Battle Scars.  If you haven’t read it, take a read, it’s pretty good.

In it, was getting up every morning, he was big into eastern medicine, I guess it is, and martial arts, for lack of a better term.  He was getting up every morning and drinking his own urine.  When his cancer relapsed, he kind of slapped himself in the face thinking, “Seriously?  Did I think drinking my own urine every morning was going to go keep my cancer away?  What was I thinking?” I do say that there are certain limits to what you want to do, but certainly having a reasonable diet and exercise is a good idea.

Joe:                 Good, thanks, Mike.

Mike:               One last thing to add, people always talk about antioxidants, so one of things that you have to look at, especially when you’re on chemotherapy, people want to load up on all these antioxidants.  Go to the nutrition store and get everything they possibly can.  Well, the problem is, the chemotherapy creates free radicals to kill the cancer cells.  When you do anything too much in a zealot pathway, I always caution.  Maybe turn it back in a little bit.

Joe:                 Cool.  Thanks, Mike.  If you had a minute with someone who was recently diagnosed with some type of cancer, what would you tell them?

Mike:               Well, I guess it depends on the type of cancer.  I think overall is relax, take a deep breath, get some perspective and knowledge.  I think anxiety and maybe hysteria, for a lack of a better word, can take over and really cripple you, without more critically thinking about what you’re facing.  I don’t mean to be slight at all, but I heard one time that cancer has a 50 percent mortality rate.  Well, yes, overall, but the good news is that 50 percent of you are going to die of something else.  Not to be too flippant, but that kind of puts things into perspective.

Now, obviously, each individual case is going to be different.  Really, taking a breath, figuring out what you’re facing, and figuring out where you’re going to get the best care.  I think that’s really the biggest thing.  Some people, unfortunately, I have to talk to and have to explain, you’re probably going to be better off getting things in order, this doesn’t look real good.  There doesn’t really seem to be any other options.  You’ve talked to the top experts.  That pathway is different.  The initial diagnosis really is just knowledge and perspective.

Joe:                 If someone wanted to find out more about your journey or maybe learn about Testicular Cancer Society and the forum, what would they do?

Mike:               Really, just visit our website.  Our main website is: testicularcanersociety.org.  Then the forums are at: tc-cancer.com.  There’s a tab on there.  That whole website, well, we need to redo both of our websites.  They’re kind of old.  The forums on the tc-cancer.com are really the most viable resource on there.

Joe:                 Thank you so much, Mike.  It has been a real pleasure.

Mike:               Absolutely.  Well, thanks for having me, Joe.

In this episode, I’m talking to Kate Williams, exercise physiologist who the creator of Movement Against Cancer program. Kate specialises in exercise oncology and gives some fantastic, real world advice on how you can use exercise to support you during and after cancer. In the interview with Kate we get to find out more about:

Movement Against Cancer

Exercise and Sports Science Australia

Cancer Council Victoria

Joe:                 Hey, Kate.  Thanks very much for taking the time to speak to me, I really appreciate it.  Can you please tell us a little bit about yourself, what you do and what are you passionate about?

Kate:                Sure, well, thanks very much for having me on today, Joe.  The first thing is, I’m an accredited exercise physiologist.  I’ve been practicing for about eight years now, working with people with a whole range of different chronic medical issues.  At the moment, I work at DNA Health Group, which is a private practice based in Cheltenham, in the Bay Side Suburbs of Melbourne.  About four years ago, I realized that I had a bit of a passion and an interest in exercise oncology and co-founded the movement: Against Cancer Program around that time.  Yes, really specializing a bit more in that area.  In terms of work, that’s what keeps me ticking.  Personally, I like keeping active myself.  Lot of road cycling particularly.  I like taking my little dog down to the beach and having a bit of run around.  Other than that, what am I passionate about?  All the typical Melbourne things, food and coffee and my football team.

Joe:                 Yes, which is?

Kate:                Hawthorn.  Big Hawks fan.

Joe:                 Fantastic, Kate.  In your experience, what are the most common misconceptions that people have around cancer?  Is it even a good idea to exercise when you have cancer?  If it is, what are some of the benefits of exercise during cancer?

Kate:                The biggest misconception is probably a pretty obvious one, is that people feel that it’s not safe, which is understandable in a way, because historically cancer patients have been told to take it easy and rest.  Why would someone who feels sick, why would they feel like the best thing to do is a workout and spend what little energy they feel like they have right now.  The thing is, we certainly have plenty of evidence to say that exercise is perfectly safe.  In fact, to my knowledge, I’m yet to see a study that suggests exercise isn’t safe.  There are definitely very good arguments to suggest that anyone who is undergoing treatment for cancer or has undergone treatment for cancer in the past should be doing exercise.  The list is very long in terms of benefits.  I don’t know how much time we’ve got.

Certainly, we know that it really helps people to cope better with treatments, particularly with things, common side effects, fatigue is a big one, pain and nausea.  It also can really help to stabilize some of the body composition changes that patients go through.  For example, a lot of men who undergo hormone treatment, they lose a lot of muscle mass and they gain a lot of body fat.  We know that exercise can help to basically reverse that process, or at least maintain it.  Bone density can be a big issue with these treatments, as well.  We know that exercise can help maintain bone density.  This obviously could increase strength and fitness and improve people’s everyday function.  All of those activities they do on a daily basis can become a bit easier with the right exercise program.  It also has a wonderful effect on mental health, and I think that’s a really important one to state.

Obviously, depression and anxiety are quite common for people that are going through cancer or have been through cancer, and exercise has been proven to help keep these things at bay, or a release for these things.  It’s really important that we mention again that it can actually help to improve patient’s life expectancy, both in regard to the cancer itself but also through some of the other chronic issues that come from cancer treatments.  Unfortunately, cancer survivors are more prone to things like heart disease and diabetes.  We know that exercise can help keep those away, as well.  Really excitingly, perhaps, we need a bit more evidence around this, but that exercise can actually help the efficacy of cancer treatment, as well.

Particularly with chemotherapy.  That’s a bit of a watch this space one, but yes, there’s some very exciting research happening in that field.  With all these long lists of benefits with exercise, I think the thing about it is, if it was a pill, if you could get exercise in a pill, pretty much every doctor, every oncologist would be prescribing it, if it was that easy.  Yes, we really think of it as medicine.

Joe:                 Yes, that’s fantastic, Kate.  I know that when I was going through chemotherapy and my uncle had recommended me to do walking every single night, even though I was really down, really feeling really flat.  I know that that alone has helped me tremendously.  Like you mentioned, the mental side of this, but also physically.  It gave me more energy and I actually felt better over the long-term.  That’s really cool.  How do you know, Kate, you know, when you’ve pushed yourself far enough with exercise, but not too much?  How do you find that sweet spot?

Kate:                That is a great question and it’s a really important one and one that I get asked quite often, actually.  Exercise intensity is really important because if you push yourself too much, you could leave yourself feeling sore and tired, which we don’t want, obviously, but if you don’t push yourself enough, then you’re potentially not going to get the benefits of what it is you’re trying to achieve.  It’s important we find that balance and that happy medium with intensity.  In the clinic here, we use tools like heartrate monitors and ratings of exertion to measure whether people are working at their right intensity.  When my clients are working out independently at home, I get them to use a really simple test called the Talk Test.

Basically, what that means is, when you’re exercising, so whether you’d be going for a walk, or going for a swim or whatever it is that you’re doing, you should be able to, if you were with someone, hold a short conversation with them.  If you’re finding that you’re having to stop and take a breath and it’s becoming quite hard to hold that conversation, or if you could imagine that you were, you’re probably pushing too hard.  On the flipside to that, if you could breakout into a song, if you could sing, then you’re actually not working hard enough.  That’s a really good basic test that you can use to find the right level of intensity.

Joe:                 That’s a great tool.  Is there any specific type of exercise that someone can do right now that will help them get better with treatment?

Kate:                Look, it’s going to be different for everyone, that’s a really important thing to say.  As exercise physiologists, we’re very much focused on prescribing exercise for the individual.  Everyone’s situation will be different depending on the type of cancer that they have, the type of treatment that they’re going through or have been through, among lots of different things.  The exercise that they used to do previously and all of that stuff.  It’s important that I say that, as well, when we’re talking about the safety of exercise, that’s if it’s prescribed appropriately.  Certainly, one of the best things that people can do is just try and continue on with their day-to-day activities.

A lot of people stop these when they’re going through treatment and that can really feed into the fatigue and actually make it worse.  It’s important that we try and keep those going.  Those things that keep you off the couch and just keep your moving, they’re what we call: Incidental physical activity.  That’s really important for keeping fatigue and also, depression and mental health in a good space.  A really great mantra that I use around this, as well, is something is better than nothing and more is better than less.  If you’re achieving those two things.  If you’re achieving those two things, then you’re probably in the right zone for yourself.

Joe:                 Perfect, that makes sense.  Kate, many of us face challenges after treatment, like the lingering side effects, or things like cardiovascular disease and also, mental health and dealing with anxiety.  What if the cancer has come back?  That sort of thing?  What can a cancer survivor do to get into good shape physically?

Kate:                Well, I think if we can break down the exercise a little bit further into some more specific guidelines.  It’s talking about keeping up your incidental physical activity, but there are three different kinds of main exercises that I get most of my patients to do.  I emphasize, again, that things need to be individual but when we talk about exercise, we often talk about cardiovascular exercise, which is what you’re doing with your walking, so it’s very important to get a form of that happening because that’s the one that, again, is very important for keeping your energy levels up, keeping heart disease away.

The second type of exercise that we prescribe often, and this is one that a lot of people are often missing, which is resistance exercise or strengthening exercises, that’s to help you maintain a good muscle mass.  You won’t get that from walking, but you can get it, obviously, from doing things like lifting weights.  You don’t need to have any equipment, a lot of things you can do at home, you don’t need any equipment, or you can just use things around the house.  Things where you’re basically putting your muscles under a bit of stress, such that they’re forced to adapt and to grow to be able to manage that stress on a continuing basis.  We know, again, that those exercises are very effective for helping you stay in good shape but keeping those fatigue and those other side effects at bay.  The third type of exercise that we prescribe, as well, often is some flexibility-based exercises.

They’re really good for keeping your joints nice and mobile, keeping the limberness in the muscles and reducing a lot of that stiffness that a lot of people tend to feel, as well.  A lot of people might already be doing this through things like yoga or Pilates.  It’s a fantastic form of exercise, as well, just for a bit of stress relief and good for mental health, as well.  They are three types of exercises that you should definitely try and include in your general routine for, as you say, maintaining shape.

Joe:                 Is there any specific type of exercise that someone can do right now that will help them get more energy, maybe lose weight, or maybe they’re two separate things?

Kate:                Yes, again, probably the main two that I would suggest from those two perspectives.  The combination of the cardiovascular and resistance exercise is going to be very important for both of those things.  If you’ve got more muscles there, your body is going to find it less taxing and not have to use as much energy to perform a task.  Whether that be picking up potted plants in the garden or carrying the groceries around, you’re not going to find that as tiring if you’ve got the muscles and the strength to be able to do that.  Likewise, if you’ve got more cardiovascular fitness from doing your walking, your swimming, your cycling, dancing, whatever it is, you’re going to find it easier to be able to things throughout your day, and that’s not going to drain your energy bank as much.  In regard to weight loss, which is a different aim, but the exercise modalities that we would prescribe for that are actually fairly similar.

Obviously, diet needs to come into that side of things, as well, certainly, resistance training is actually very important for people trying to lose weight as well, because lean muscle tissue is what burns fat.  If you’ve got more of that, that’s going to raise your metabolism and actually make it easier for you to lose weight, or even it might be for some people just helping to maintain a healthy weight.  That’s a really important point, if you’re just doing some cardiovascular exercise and trying to lose weight, to make sure that you’re including some form of weight training in your week, that’s going to be more effective.

Joe:                 Speaking of diet, I know it’s a completely different area and we could probably spend hours talking about that alone, but what in your opinion are some specific and also, realistic things that you could recommend to someone who is facing cancer?

Kate:                In terms of diet?

Joe:                 Yes, in terms of diet.  Yes, just broadly speaking.

Kate:                Yes, that’s okay.  Look, I’m a really firm believer in utilizing food as medicine.  I think a really great place to start for a lot of cancer patients and people that have been through treatment is just with the food pyramid that we all probably would have seen, but whether we could name all of the sections of it.  It’s easy to look up.  The thing is, a balance diet, really, whichever stage of treatment you’re at I think is a good place to start.  In terms of helping your energy levels and whether you’re looking to maintain weight or lose weight.  I would like to highlight particularly that protein is very important.  Particularly if you are doing those strength training exercises and trying to build a little bit of lean muscle mass, whether that be for weight loss or to maintain bone density or strength, the amino acids that protein contains are the building blocks to helping you build that muscle or maintain that muscle.  It’s very important that you consume different sources of protein throughout the day.

I think that’s an important point.  Obviously, it can be a little bit tricky for some people with different medication that can affect appetite.  There can be a few other issues in there, as well.  I think if it’s something you want a little bit more help with, exercise physiologists can give you some general guidelines, but certainly I’d recommend getting some guidance of a current practicing dietitian, when you want a bit more guidance or struggling with weight in some form.  They’re the experts in their field.  It’s relatively easy to find one on the DAA website.  They’re a great place to find that information.

Joe:                 Okay, that’s great.  Many of us would also benefit from changes in our lifestyle.  What would you say would be some of the habits that you could put in place to make your life better, but in a way that is sustainable, that really isn’t torture, for want of a better word?

Kate:                I love that word, “Torture.”

Joe:                 You must get that a lot.

Kate:                Sometimes.  I think the first one to outline is particularly for people who haven’t really done much exercise in the past, or they’re just starting out after a long break, is not to think to put too much pressure on yourself and that it’s not going to be really hard slope to start out with.  If someone’s getting you to do that right off the bat, then you’re probably not quite in the right place.  It should just be starting with moving more.  I think that’s a good way to think about it initially.  It doesn’t have to necessarily be structured sessions, but just if you’re not really doing a lot right now, consider that if you’ve got some shops that are ten minutes away and you need to get some milk, maybe that’s a great place to start, with just walking there.

For some people, even just going to the letterbox might be enough.  It might be just getting off the tram line one station earlier and including movement in your day that way or taking the stairs.  All of that counts towards that incidental physical activity that I was talking about.  I think another one that’s really important is prior planning, particularly if you are suffering from a bit of fatigue, and a bit of a lack of motivation, as well, just planning some steps through your day can really help.  Even in the exercise physiology world, this is what we often term as pacing.  If you’re having a busy day doing something and it might be you’ve got some family stuff on, and you’re already on your feet a lot, that might not be the day to do a big exercise session or go for a longer walk that day.  Or you might be looking at that day thinking, “I’m probably not going to feel like cooking a healthy meal that night.” Maybe you’ll put your exercise off until the next day or maybe the day before, you’ll have prepared some sort of meal and you can pop that in the freezer so that’s ready to go for that night.

I think that’s where keeping a diary can be quite useful for a lot of people.  We do that with a lot of our patients here.  They can put those steps in place to help manage life, as a whole, better.  The other thing I was going to mention, actually, in regard to physical activity.  Something that can be quite useful for people, pedometers or Fit Bits.  They’re really good.  If you’re lacking a bit of motivation because they’ll show you if you’re hitting targets and they give you something to work towards, but at your own pace, as well, which is very important.

Joe:                 Yes, because it’s really important to see progress, right?

Kate:                Yes, absolutely.  They give you that measurement, they show you how you’re going, which is if you’re not really motivated, that can really help when you see that in front of you.

Joe:                 That makes a lot of sense.  Is there anything else, Kate, that you would recommend to someone to stay in good shape, physically but also mentally and socially, as well?

Kate:                Diet is a really big one, obviously.  We already touched on that.  Got a lot to do with energy levels and that holistic health.  Staying in contact with family and friends, absolutely, and letting them in with what’s going on as much as you can, if you feel comfortable.  A support network is very important, I think.  Having those people around you.  If you don’t have a lot of those people around you, you may find – I know in talking to David, he mentioned a couple of times the Cancer Council and they have some fantastic resources that you can use if you don’t have those people to call on immediately around you.

Psychologists are fantastic if you’re not coping, as well.  I can’t recommend their services highly enough.  The other thing that I think is coming to the fore more recently is mindfulness, which I think maybe you touched on with David, as well.  I haven’t seen a lot of research specifically on mindfulness and cancer, but I do have a few patients that have been certainly practicing it.  I’m an advocate of it myself, a practicing advocate.  Certainly, they report very positive benefits out of it, in terms of managing anxiety and particularly around times of treatment or when they’re coming up to scans, it can really help them cope.  The research that I have seen, does show that it helps slow aging down.  That’s got to be a benefit for anyone, right?

Joe:                 Yes, absolutely.

Kate:                That’s a winner.  I think, again, watch this space, I think this is something that will come more to the fore in some research about cancer.  If you’re interested in it, there are some great apps out there that you can just simply download to your phone for free, which you can pick it up from those.

Joe:                 That’s fantastic.  When it comes to exercise and also, creating healthy habits in general, is there something that people tend to overlook or perhaps it’s something that people are not doing right?

Kate:                I think just on a general level, I think often people just don’t seek the advice that they perhaps need, or they’re too afraid to seek the advice from different people.  Whether that be about exercise.  I know a lot of people often they’ll come in and say, “I wish I did this earlier.” That’s a really common one.  I’m sure that’s not just about exercise but also, diet.  If they’re struggling emotionally or with mental health, to find that support because there are so many sources out there.  I think that’s why it’s great that you’re doing this service for people because sometimes it’s just that people aren’t aware of them.  Certainly, again, the Cancer Counsel is a great place to start in seeking support for whichever types of these issues that you feel need addressing.

There’s an expert in essentially everything today, they’re out there and they’re willing to assist, but it’s just finding the right one for you, but certainly don’t be afraid to start with your oncologist as a starting point for asking those questions, if you’re wanting to get started with exercise, you can always bridge that with them and say, “Well, who should I see?” Put in place some steps to find an exercise physiologist.

Joe:                 Absolutely.  Speaking of that, I know you’ve started your own program called: Movement Against Cancer, can you please tell us a bit more about that?

Kate:                Yes, sure.  Movement Against Cancer, or MAC as we call it for short, is the program that we developed here at DNA Health Group.  Completely developed and run by our own accredited exercise physiologists.  Basically, it was coming to fruition because we were seeing a lot of people with cancer and we just saw this gap.  We knew that there were so many benefits for cancer patients, for them to undertake exercise.  We didn’t really have any programs for that, that we knew of.   We thought the process should be fairly similar or my philosophy is that there’s stage one, two, and three programs for people that have heart disease or heart issues.  The benefits are similar if not stronger for cancer patients, so why should there not be a program the same, when there are one in two people now being diagnosed with cancer.

We feel like this is something we really need.  That’s how MAC came about, and obviously through my own interest in oncology, we see people through any real stage of their cancer journey, I suppose.  Whether they’ve just been diagnosed, if they’re currently undergoing treatment or a couple of years after treatment.  The sooner the better, though.  Our practitioners basically work to determine with these people, what do you want to get out of the program.  Do they just want to feel better?  Do they want to get back to running 5km for some people?  Depending on what those goals are and what their condition is, we can put together and individualized program to help them achieve this.  That can be an involvement in one or a combination or different streams.  We have one-on-one sessions with an exercise physiologist.

We have supervised group classes, where the exercise physiologist is in the room with the participants the whole time.  In those group classes, these people still perform their own exercise program but they’re in there with other people.  That’s a fantastic social environment, a lot of people enjoy that one.  We also can devise home programs or programs for other gym facilities, if people are already enrolled with other gym facilities.  We can even take our services to home.  It’s a very flexible broad program.  We’ve had great success with it so far, which is good.

Joe:                 That’s fantastic, Kate.  Good on you.  I know you’re big on having an exercise program that is evidence based.  Can you tell us a little bit more about what that is and how that’s important?

Kate:                Definitely.  As accredited EPs, we’re working under a code of conduct when we do our accreditation each year and this code of conduct states that we must keep up to date with the most current research.  We do that to prescribe what is essentially optimal for the individual person.  If it’s not proven safe by research, basically, we won’t do it.  It’s really important that we state that because it’s a good thing, but the research particularly based around cancer is constantly being updated.  There’s new stuff happening all the time, which is fantastic.  It very much means that we need to keep abreast of it, so that whenever we see a person, we can definitely say, “We can show that this works, and we can tell you that this doesn’t.  We’re going to only give you what works.” Yes, it just means that it’s a sound program all the time.  Yes, that’s how it works pretty much.

Joe:                 If someone wanted to be a part of the program, or to work with your individually, what would they do to get in touch or find out more information about you?

Kate:                Yes, the best thing to do is probably jump onto our website which is: www.movementagainstcancer.com.au.  Our contact number and emails are in there.  There’s also, obviously, a fair bit of information about the MAC program on the website.  We have Facebook and Instagram accounts, which are constantly being updated with research articles in relation to exercise oncology.  They’re well worth a look, if you’re interested.  The other thing I’ll just mention is, because hopefully, presumably, you have listeners from all over the place and they’re not necessarily all close to us here, that if you’re interested in getting in touch with an accredited exercise physiologist, you can of course ask your oncologist.

The other thing you can do is jump onto the ESSA website.  ESSA.org.au.  That’s our national accrediting body.  On there, there’s actually a search engine for exercise physiologists, so you can pop in your postcode.  You even have the ability to search EPs who specialize in cancer and find one that is close to you.  It’s got to be convenient, right?  Yes, that’s a really good thing to do, as well, if you’re not Melbourne based.

Joe:                 Cool, fantastic.  Well, thank you so much, Kate.  It’s been fantastic.  I really appreciate your time.

Kate:                Pleasure.  Thanks for having me, Joe.

In this episode, I’m talking to medical oncologist David Pook from Melbourne, Australia. David treated my cancer and he has been incredibly positive and supportive throughout. In the interview with David we get to find out more about:

Joe:                 Hi, Dave.  Thank you so much for doing this.  I’ve been really looking forward to this.  Please tell me about yourself.  What do you do?  What are you passionate about?

David:              Well, thanks for inviting me on, Joe.  I’m a medical oncologist with a special interest in GU cancers.  That’s kidney, bladder, prostate and testicular cancers.  I trained and obviously did a medical degree and then I did physician training, specialising in medical oncology.  I actually went off and did a higher degree, actually, in colon cancer, different area.  Still, learnt some skills about clinical trials and at the moment, I’ve got a mixed practice.  I do roughly half private work, the other half public, working at Monash and I also spend a little bit of time at the university, as well, and I do a lot of clinical trials.  My passion is probably looking at new treatments for cancers, trying to push the field forward and improve on where we are now.

Joe:                 Fantastic.  What are some of the developments that are happening right now?

David:              Well, I think the biggest development that most people would say of this decade is the immune therapies.  The immune therapies, they give us huge possibilities and we’ve seen amazing results in cancers, like, melanomas.  Like most things, they provide big challenges, as well, so there’s that potential to have amazing responses, and we’re seeing really nice responses in kidney cancers and in bladder cancers.  The toxicity is hard to manage.  We’re dealing with a whole load of new toxicities.  This is a whole new way of treating cancer.  It’s completely different to chemotherapy and to other treatments that we currently use.

Joe:                 If we think about opinions on cancer, and you mentioned the result is the different treatments and they’ve got new research coming out, in your experience, what are the most common misconceptions that people have around cancer?

David:              I think the most common misconception is that it’s always preventable.  A lot of people seem to come with a little sense of guilt, like, what have I done?  What did I do wrong to get the cancer?  Often, actually, in nearly all cases there’s no blame for a cancer.  Some things you can do can increase the risk of cancer, for example, if you smoke, you’re going to increase the risk of certain cancers.  A lot of cancers just come through pure bad luck.  I think some people find that hard to deal with because it seems very unfair.

Joe:                 What about DNA and in terms of hereditary cancer, is there anything on that front, do you think, that people should be concerned about?

David:              Not so much concerned about but I think we’re going to see huge changes in that area.  I don’t now over which time period, I assume within the next one to two decades.  The biggest thing we’ve seen is in the area of prostate cancer, where it turns out that maybe one in ten men diagnosed with prostate cancer have an underlying problem with DNA repair.  That was a finding that was really unexpected.  What’s made that possible, or that result possible is the fact that we are much better able to interrogate DNA now, looking for mutations.  The first DNA repair defect was called BRCA-1.  B-R-C-A.  It stands for breast cancer, BRCA-1.  Soon after that, came BRCA-2.  Up until pretty recently, it cost you a couple of thousand dollars to test for one of those mutations.  Then really within a few years, we can now test for 14 mutations at a cost of about $600.

Joe:                 That’s amazing.

David:              I think it’s a bit like computing.  As we see the ability, or the power of computers increase, at the same time, the cost goes down.  We’re seeing the same sort of phenomenon with some of these DNA testing techniques.  I don’t think it’s beyond the realm that DNA testing is going to become a lot more common.  It might be common for everyone.  Everyone might be tested.  From that, we might be able to design a better risk profile.  Rather than trying to screen everyone for a particular cancer, we might be able to group people a little better and say, “What you need more intensive screening for prostate cancer, whereas, you might not.” Again, that’s going to provide a whole load of challenges, as well.  You’re walking around knowing that you might have some sort of genetic defect.  There’s always that downside as well as the positive.

Joe:                 Yes, because I guess it weighs heavy on your mind.

David:              Yes, you’ve got to get life insurance.  At the moment, we have genetic counsellors who have to talk to people about things like that.  If we find a gene, you’ve got to disclose that to a life insurance company.  You can’t just pretend you don’t know, you have to actually tell them.  Them what’s the law around, are they allowed to discriminate against you based on that?  If you’ve got a certain gene, can they refuse to offer you insurance?  There are all of these factors and issues that need to be thought about before doing this sort of testing.  I think it’s going to change a lot.  I think that’ll be one area where, even cancers now, where when we say, “Look, there’s no genetic link…” I’m not sure that ten/twenty years from now, as we test more and more genes, we don’t start to find some of these links.

Joe:                 Of course.  You’ve talked about immunotherapy and in terms of other areas, what are some of the biggest changes that are happening in the medical world, in the world of all the senses, supporting oncology?  What are some of the biggest changes that are happening in terms of dealing with cancer?

David:              I think the big thing now is that the pharmaceutical companies are better able to design drugs.  The biggest change we’ve had this century, probably pre-2000, say, was that the way to discover a drug was to dig around and discover a chemical and then try and find a use for that chemical.  A lot of those chemotherapy drugs are really natural type products.  They’re isolated from bacteria or leaves or certain organisms, and they’ve been modified by the companies, but a lot of those chemotherapy agents were naturally occurring substances to begin with.  Whereas, now, it’s changed, what the whole thing is done in a completely different way.

Which is probably more rational, which is to try and understand what drives the cancer and then find out which protein, what’s the defect?  What’s pushing this cancer along?  Then asking a pharmaceutical company to design a drug to block that particular protein.  We’ve seen that, we’ve seen designer drugs, like a drug called Enzalutamide, for example, in prostate cancer.  They knew that they needed to block something called the androgen receptor, which is where testosterone signals, in prostate cancer and drives the cancer.  They designed a drug to block that cancer better than it had every been blocked before.  That drug makes a huge difference in prostate cancer.

Joe:                 It’s fascinating the research that you do.  Researchers, like yourself, work closely with pharmaceutical companies, is that what happens?

David:              Yes, a lot of what we do are clinical trials.  Now, some of those are designed and funding by pharmaceutical companies.  Some of them are funded by clinicians with the support of companies.  We do both.  I’m also a member of an Australian trial group, ANSUP, which is an Australian trials group, which will do both.  Which will help design non-pharma studies.  There’s a testicular study, looking at how to deal with the anxiety of the diagnosis, which is completely non-pharma.  There are also large prostate studies that are run through a trial group like that, it’s an independent group.  At the same time, pharmaceutical companies will approach the hospitals directly and then will run pharmaceutical trials, as well.  the advantage of that, though, is that we can give, or we can gain access to new drugs for patients before they’re approved.

Joe:                 Yes, that’s fantastic.  Speaking on the mental side of cancer, you obviously deal with many patients who are facing cancer right now, what do you think are the biggest challenges for someone who has just found out they’ve got cancer?  Who is facing the diagnosis?  What are they going through, in terms of their everyday life?

David:              I sometimes think you could answer this better than me, because you’ve been there.

Joe:                 Absolutely.

David:              From my point of view, I think you’ve got to deal with the psychological effects.  I think you’ve got to be aware that a cancer diagnosis is like a death in the family.  It’s going to have the same psychological fallout.  You’re going to go through those stages of grief.  It takes time to deal with it.  I think some people just need time to come to terms with what’s going on.  Then the next thing is health.  Then, you know, the therapies we use are toxic therapies.  How do you maintain your health dealing with the side-effects of what we do to your body to treat your cancer?

I think that’s a challenge, as well.  With those toxic therapies, there’s obviously the challenge of work.  How do you work through this?  Then the other aspect would be your relationships with your partner, your children, while you’re going through all of this stress, how do you make time to work on your relationships and make sure you’ve got that support around you, as well?  It’s a big challenge.

Joe:                 Absolutely.  Do you think that most people are open about having those challenges?  Do they talk to their friends?  Do they talk to their family?  Are they open to talking about cancer and how it just plays on your mind and everything to do with that?

David:              I think it’s improving.  I think the work done by the prostate cancer foundation of Australia and Movember, I think have improved things.  I think initially women and men dealt with cancers quite differently.  I think breast cancer, people really did talk about breast cancer all of the time.  Yet, we had prostate cancer, which is a similar number of people diagnosed, similar effect on people’s health.  It wasn’t really talked about as much.  I think that has been a difference between men and women.  I think it’s improving.  I think that men feel they can talk about this stuff a little bit more.  I think people vary a lot.  Some people really are very private, they’re very worried about the outward signs of being diagnosed.

Give chemotherapy and you lose your hair, that tells everyone what’s going on.  Some people, that’s a big problem.  Especially people that are working or they’re in management roles, that can be hard.  Some people just don’t want to deal with the hassle of telling everyone they know.  if you don’t have any hair, then you’re going to get questions, people are going to say, “What’s going on?” Some people don’t want to deal with that, they find that difficult.  Most people I see, they seem pretty open with their partners.  If they come in with their partners, they are normally pretty open with them.  Sometimes, the intimacy stuff and other things, I think some people find really difficult.

Joe:                 Yes, absolutely.  What about survivorships, because I guess it’s a very different reality?  I know that getting regular check-ups, especially when you get closer to the appointment and you’re doing your tests, and you’re thinking, and you’re worried about whether the cancer is going to come back.  Do you think that presents a completely different challenge for people, as well?

David:              Yes, and a lot of research has been done into survivorship.  How to live post-diagnosis and treatment of cancer?  It’s well-known that’s it’s hugely stressful.  I probably didn’t realise that when I first started.  Chatting about the weather and stuff with a testicular cancer patient, who’s waiting for their results isn’t a good idea.  I think it’s sometimes the awareness on behalf of the doctor, that how stressful it actually is.  You’re normally opening with, it’s fine, the tests are fine.  Just having that awareness that people really are – it’s obviously going to provoke a lot of anxiety.  There are huge implications based upon one little line of a test result.  It’s normal, it seems to improve with time.  ANSUP did do a study looking at anxiety levels in testicular cancer patients, after they’ve had treatment and when they were being followed.  You did see those anxiety levels improve.

Joe:                 Yes, absolutely.  Yes, because cancer is tough to deal with mentally because you’re constantly between your treatments or you’re waiting for results and word from your specialist.  Do you think it’s okay for people to just get angry, get frustrated, get pissed off, because they don’t know how to deal with it all, mentally?  I guess, how can you turn that around to be more positive?

David:              I think so, I think – I’m not a psychologist – but I think that most experts will say that you actually need to experience emotions.  I don’t think you can try to be relentlessly positive when you’re not feeling positive, I don’t think’s going to work.  I know there’s always that image of the positive person fighting the cancer with their boxing gloves on.

Joe:                 It’s not real.

David:              I don’t think the reality is like that at all.  I don’t think people die of cancers because they didn’t fight hard enough, or they weren’t positive enough.  I think a lot of this is out of our control, the clinicians, as well as the patients.  I think sometimes despite the fact that everything’s done properly, the cancer doesn’t respond to the treatment the way we would have hoped.  I think these emotions are all normal.  I think that emotions have to be experienced.  I suppose it’s just knowing that there’s a lot of support out there, if required.  If you are feeling angry or frustrated, that’s okay.  if you’re really feeling depressed and really concerned that these emotions are becoming too much, or something that you can’t handle, that there’s a whole support network out there.

The Cancer Counsel is a good start.  They can get you to talk with people who have been through cancer treatments and cancer diagnosis and just talking to someone that’s been through it can be helpful.  Or, you may need professional help.  Psychologists can talk about mindfulness and other techniques to deal with these strong feelings.  Occasionally, some people need the anti-depressants and other medications if they really become depressed because of the strain.

Joe:                 Yes, you mentioned stereotypes.  That’s definitely still there, but hopefully that’s changing.  The stereotypes, like you mentioned, about fighting the cancer, or that people who are survivors, they’re portrayed as heroes.  I guess some of those stereotypes are changing, aren’t they?

David:              Yes.  I don’t know, I think it’s probably like that a lot in life.  I think that there are things that we can control and then there are things that are just completely beyond your control.  I think that if you’ve been diagnosed with cancer, you’ve got control over some of it.  You can keep fit and you can try and eat well and get enough sleep, everything that you’ve been advised to do.  You can turn up to the hospital if you get a fever, like you’ve been asked.  You’ve got control over those things, but there are other aspects where you don’t have any control over it.  Yes, I think some people seem to really portray – I don’t like that.  I’m not sure I’m thrilled with that fighting cancer with the boxing gloves-type analogy.  I just don’t think it’s like that, because the connotation then is that if you die from cancer, you just didn’t fight hard enough.  It’s just not true.

Joe:                 It’s not fair.

David:              It’s not fair, it’s not true and there’s guilt involved, as well.  The people that I’ve seen who have died of cancer, it’s not through lack of will.

Joe:                 Absolutely.  Is there anything that you recommend for someone to stay in good shape, mentally, physically, what would someone do?

David:              Look, I think exercise is really important.  Especially people who are going through chemotherapy, or hormone therapies for the cancers, it seems to really help the fatigue.  We’re lucky enough to have experts now who can design or tailor exercise programs for people with cancer.  They’re called exercise physiologists and they’re university trained, and they also often have done further degrees or further training with cancer.  I’ve seen amazing results, especially with men who are having hormone therapy for prostate cancer, for example.  I’ve seen huge differences in how people feel, just by attending regular exercise.  There’s even some evidence that maybe it’s got an effect on the cancer.  It’s too early to say, but there are a few downsides.  It seems like a very positive thing that people can do, and it’s something where you feel like you’re doing something positive.

Joe:                 Yes.  You definitely have given me advice to do daily walks.  I have to say, it’s been fantastic for me during chemo, and I’ve keep this habit up until now.  I hope I keep doing it.  It’s really helped me, even when my head was in a fog and I was just feeling really crap.  I still would go, and do it and it made me feel better.  Definitely, I can’t say enough good things about it.

David:              Well, I think it’s also go mental effects, as well, maybe you don’t feel the same as me, but if you do some exercise, that’s often when you go through things in your head and just doing that, I seem to get rid of feelings of anxiety and frustration and other things by doing something physical.  I think it’s got mental effects, as well, I’m sure it has.

Joe:                 I can’t believe, looking at you, Dave, I can’t believe that you have anxiety.  We’ve talked about that you’ve seen a lot of people who are battling cancer, is there something that people tend to overlook, something that could help them deal with it better?

David:              Yes, we talked a bit about that it’s not a fight and being out of control, some things you can control, some things you can’t.  I suppose the other aspect is just being aware of anxiety, being aware of what it is.  It’s not obvious sometimes.  Through people that you’ve met, anxiety comes out in different ways.  People express anxiety in different ways.  I suppose it’s just being aware of anxiety and what you’re like when you’re anxious.  Do you sweat?  Does your heartrate go up?  Do you shout at people?  Calling it what it is, and if it’s anxiety, looking at ways to manage that.  Obviously, cancer treatment, cancer diagnosis is a huge source of anxiety.  I think managing that anxiety is incredibly important and can often be overlooked.

Joe:                 I guess what really helped me was really talking to my wife, talking to my family, talking to my friends about it.  It wasn’t easy at first but as I started to open up and talk about being angry or scared, I realised that it’s okay and it really helped me to deal with it myself.  If that makes sense?

David:              Yes, it seems to be, I don’t know why, if you name an emotion, it seems to help.  If you can actually work out what the emotion is, “I’m anxious”, it actually seems to help because you’re like, “Is that what it is?” That’s something, obviously, as a psychologist, my wife’s a psychologist, so she knows a lot more about it than I do.  That’s something that psychologists are very good with this mindfulness that they talk about.  It’s just that ability to recognise feelings and thoughts and let them out.  Not try and bottle them up, not try and supress them or fight them.

Joe:                 Has there been any research done that you know of in terms of mindfulness and cancer?

David:              Not that I know of, I’m sure that there has, not that I know of.   I know there’s been research done into trauma, other types of trauma, so war veterans and other groups.  I’m sure that they’ll be similar types of trauma experience by people who have been through medical diagnosis and medical treatment.  I know that there are mindfulness techniques that are shown to be very effective in those groups.

Joe:                 Yes, that’s really interesting.  That’s something that’s definitely worth looking into.  I guess with anxiety, if sometimes people feel that they want to get a second opinion, do you think that they should do that to seek advice of someone else?  If so, what is the best way to go about it?

David:              I think you can always ask for a second opinion, if you want.  Most medical oncologists in Australia, anyway, are very well-trained.  You should be getting pretty consistent messages across different groups.  It’d be interesting to ask whether or not your case had been discussed in a multi-disciplinary meeting.  That means that each case is put in front of a panel, so a number of medical oncologists, surgeons, radiation oncologists, the radiology is check, the pathology is checked.  Most large, definitely large teaching hospitals, large private hospitals, will have meetings like this, where each case is discussed.  I think that’s probably useful to know whether that’s happened.  Then you know that your doctor already has got the opinion of a panel.

If that hasn’t happened in a smaller hospital or it hasn’t happened, I don’t think most doctors would be too upset with you saying, “Look, I would just like to ask for a second opinion” and I’d be upfront about it.  It’s not a massive community, obviously.  We all know each other.  Most doctors I don’t think will be particularly upset, if you said, “Look, I’d just like to get a second opinion, just to check.” You should be getting consistency across the two.  That’s what you want to get.  You don’t want to get a radically different second opinion.  Otherwise, you’re left saying, “Well, what’s going on here?” The idea of getting one is that you get the second doctor to say exactly the same as the first.  You go, “Great.  Okay.  This is the right treatment.”

Joe:                 Yes, because I’ve that, in terms of other communities that perhaps people are not exploring enough, for online communities, I’ve seen people who frequently show up and put up a topic that says, “I’m scared that I may not be getting the right answers.  Who can I talk to?” I’ve definitely seen online that some people have those concerns.  It’s great that the people can ask for that second opinion and just know that they can get it confirmed and they don’t have to worry about it.  Absolutely.  If someone wanted to reach out and get in touch with the services that you provide, or just wanted to get help, what would you recommend?

David:              I think the first step would be the cancer counsel, you know, there are cancer counsels in each state.  They’ve got an excellent website and they’ve normally got links to a whole load of different resources.  There are also some disease-specific groups.  If you have prostate cancer, for example, the prostate cancer foundation of Australia is on Movember.  Movember now is also starting to provide support for men with testicular cancer.  Kidney cancer, looking at kidney health Australia.  Yes, there are a number of places where you can seek help.  Obviously, your treating doctor through the hospital should have access to psychology, dietitians, exercise, physiology.  All of these should be available through most health services, as well.

Joe:                 Cool, fantastic.  Thank you so much for your time today.  It was a real pleasure.

David:              Pleasure.  Thank you very much.