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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:
- The hammer-blow of your diagnosis
- How to deal with a broken system if you fall through the cracks
- Why starting your blog can help you deal with cancer
- The importance of gathering the facts about your cancer
- Why some folks disappear from your life when they found out about your cancer
- Starting a new way of life with cancer
Links
Prostate Cancer – Daniel’s Blog
Full Transcript
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: www.danielsencier@blogspot.com. 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: www.danielsencier@blogspot.com. 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.