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Campaigning for Change

Elvin Box, a popular and passionate advocate for men with prostate cancer joins OnFocus to discuss learnings from his experience and how he’s taking these forward to improve the experience of others. Diagnosed in 2016, Elvin is a Movember UK ambassador and has written and campaigned extensively on a number of issues impacting men and their families as they experience a diagnosis of prostate cancer and navigate treatment options.

See recent publications from Elvin here:

https://metro.co.uk/2020/02/29/kept-cancer-diagnosis-secret-12316187/?ito=article.desktop.share.top.link

https://www.jodivine.com/blogs/perspectives/winning-back-our-sex-life-after-prostate-cancer-a-personal-story-by-elvin-box
Please find below a written transcript of the interview.

Clare Delmar:
Hello and welcome to On Focus brought to you by The Focal Therapy Clinic, where we connect you with issues facing men diagnosed with prostate cancer that are little known, less understood, often avoided and even ignored. Prostate cancer is now the most commonly diagnosed cancer in the UK, and with this sombre fact comes a number of challenges and opportunities. I'm Clare Delmar. Joining me today is Elvin Box, a popular and passionate advocate for men with prostate cancer. Diagnosed in 2016, Elvin is a Movember UK ambassador and has written and campaigned extensively on a number of issues impacting men and their families as they experience a diagnosis of prostate cancer and navigate treatment options. Elvin, thank you so much for joining me today and welcome.

Elvin Box
Thank you so much, Clare. More than delighted to be here. I'm really, really glad that you've asked me to do this.

Clare Delmar:
It is indeed. It is always lovely to chat to you. So let's jump right in, because I'm sure some of our listeners are wondering, what does it mean to be a passionate advocate? Can you give us a quick summary of when you were diagnosed and how you were treated? So this gives us a context for where you developed your campaigning and your advocacy.

Elvin Box
Yes, sure. Diagnosis was completed at the end of June in 2016, it was quite long and fraught, which I try to get across to people when I do talks, is that they kicked off in February. And every two years I was going for my health check with my private health insurer and I was instructed to go and see my GP. I didn't read the report and when I got to see the GP, I thought, we're going to talk about something else, because I had quite a bit high blood pressure. So no, no, no, no, no, for the second time in two years, your PSA, which we all know is, of course, the only blood test you can have for prostate cancer and it's elevated again.

Clare Delmar:
OK

Elvin Box
I said, that's a useless test, isn't it? And she was really, really sweet. She goes, no, no, no, that's what you heard before two years ago. Two years ago I was told it was elevated, and told it was rubbish. But she was adamant. And so off I went to see a urologist because I was in private medical health very, very quickly after going through an MRI scan and then actually a brilliant biopsy with the same chap, very sadly, it is cancer. A very morbid time because I had to have another scan to see if it gone to the bones. And that was good news, it hadn't gone to the bones. But please hurry up, because I don't think it's going to stay within your prostate much longer. Two options. You can either go and see the lovely people at Romford, go for a three year radiotherapy programme. And obviously, as my wife said, you will be chemically castrated because you have to reduce testosterone levels. Or go see the lovely people at The Princess Grace, and have a robotic prostatectomy, a radical prostatectomy that's complete. And that's what my wife and I decided.

Clare Delmar:
OK, OK.

Elvin Box
We decided about two weeks before I had an opportunity to go for the operation, to do that.That was it. I hope I've described that OK, quickly enough for you and in enough detail?


Clare Delmar:
Yep. No, that gives the details. So that was all in 2016.

Elvin Box
Yes

Clare Delmar:
So it's been five years. You've written extensively about a number of things going forward that, that you learnt from your own experience that you'd like to share. And one of them was your recovery and what you learnt, what surprised you, what you expected and what was most impactful to you and your partner? Can you discuss some of these?

Elvin Box
Absolutely. Yeah, I knew there would be a level of incontinence. I knew there would be a level of impotence. So that meant there was going to be a lot of wee around and it would mean there'd be a bit of a fight to get your erections back. I was told that much. I didn't realise, nobody actually said you wouldn't be able to produce semen again. And I just didn't know that. And, you know, you're not going to be able to ejaculate again. And that's stark. Blimey. Also, I wasn't aware of any impact on my mental health. I didn't put two and two together. Nor did my good lady. Well, my Jude, you know, she scoured the web for information because I didn't want to look, quite honestly.

Clare Delmar:
That's a really important point. I mean, I've often said to people, you know, when they're looking online, as they're often referred to do, it's not like you're in the frame of mind where you're looking for a holiday or buying a new car. I mean, you're in a very different emotional state and to receive this information, aren't you?

Elvin Box
It's scary. Definitely the lead up to being told it's cancer was horrendous. And the worst period was wait to find out if it got out of the prostate.

Clare Delmar:
Of course

Elvin Box
That was the worst. The impact, nobody said anything about, you know, you going to get nuts with this, Elv.

Clare Delmar:
Yeah. Yeah.

Elvin Box
You know, so the first eight weeks I was a model, you know, the model patient. I project managed my recovery, I really did.

Clare Delmar:
I should mention to our listeners that you're a construction man. So project management comes quite naturally to you after how many decades of doing that?

Elvin Box
Yeah, lots.

Clare Delmar:
And I just imagine you had a spreadsheet and all kinds of models for this. But anyway, do continue.

Elvin Box
I knew what I could do? Well, to be fair to... Can I say my surgeon's name, would that be alright?

Clare Delmar:
Yeah, of course.

Elvin Box
Declan Carhill,  my hero. And he was brilliant because he stayed in contact with me for those first eight weeks.

Clare Delmar:
That's really good.
Elvin Box
And I said, I want to do this, I'm feeling this, because you must...  I'll let you know what Jude thought was brilliantly funny was that my testicles felt like coconuts, about the same sort of texture, everything.

Clare Delmar:
So that was not something you expected?

Elvin Box
No,  somebody said they might do, but not like this.

Clare Delmar:
That's crazy. I mean, one of the things about talking to you is that, you know, you speak and you've written so, so generously and openly and extremely honestly about a number of these topics that have emerged from your own experience with prostate cancer and that includes mental health that you're touching on and and sexual relationships. So what message are you trying to communicate to other men in your role as ambassador for Movember? And how have they impacted some of these people?

Elvin Box
First and foremost, message. I want to get across to all of them each and every time I meet them. And hopefully they'll be, as now any, any and every gender in the room. Any and every gender in the room. And as Jude said, you've got to tell them that you are not archetypical prostate cancer survivor. You tell them, El, my cousin said you never looked fitter.

Clare Delmar:
Yeah

Elvin Box
Never been stronger.

Clare Delmar:
Yeah

Elvin Box
And you've never been healthier, which doesn't happen a lot. And so what I have to say that this is luck. I want you to be luckier. I want you to be so much more luckier than me.

Clare Delmar:
Yeah

Elvin Box
And I thought about it. What the hell is that's all about? And then what I do is that I go through not just my story. Most important thing, I need them to understand this is what it's all about. So I've got some lovely diagrams, stuff like that, and photographs and everything. So this is what prostate cancer is. This is it. And I explain my story against that, my experience. But sadly, I have other stories to tell now of Peter Cuthbert, a wonderful guy, had exactly the same operation as me. He had the operation four years before me. It didn't work. And so I tell people now that sadly after an eight year fight, Peter sadly passed of prostate cancer. And you also have to understand how difficult it is to diagnose anyway. So just to even to identify it, this is one of the impacts. I've got two stories about the impacts I have, which I'm really grateful for. Rob phoned me up from his hospital bed and he said, I'm in Kingston hospital, I've been diagnosed with prostate cancer. They've told me it's because I had some bone marrow get into my kidneys. That's when my kidneys failed. That's why I'm in hospital. And they said, you haven't got ligament trouble. You've actually got an erosion of your bone in the back of your knee because that's where the prostate cancer is now attacking you. And so I explained to everybody, look, I knew that Rob was in a really bad way. I knew he was in a really bad way. But it wasn't for me to make that diagnosis. I leave that with his consultants.

Clare Delmar:
Indeed.

Elvin Box
And Rob only lasted eight months.

Clare Delmar:
Given some of the experience of the people you've impacted. And of course, your own, what aspects of prostate cancer diagnostics and treatment in the UK obviously, do you see as particularly urgent for attention from government or the medical community? Is there anything that screams out of you or that you feel particularly strongly about?

Elvin Box
Very. And number one, I don't want any more argument about who should and who shouldn't and when, if you can have one, have a PSA. Everybody who knows me knows I do it at talks, I do it on tweets, social media. I go on and on and on about this wherever it is possible to do so. Wherever I can, I let people know is to you as a person with a prostate, as we now say, you should be allowed to have without any shadow of a doubt a PSA from the age of 50. And obviously what I'm antagonised by is that you need one from the age of 40. I believe and also I mean, I've it on really, really good authority is that, listen, it could take ten years the tumour in a prostate, can take ten years to actually evolve and actually get aggressive.

Clare Delmar:
Yes, so PSA you think that's really important?

Elvin Box
Yeah, must have the PSA. Got to have a PSA. And the second thing is that I say to guys and anybody who will listen to me now is that once that's been had, you must if there's any concern, give the guy or the person with the prostate, give them an MRI scan.

Clare Delmar:
Are you seeing that not happening? Is that why you feel so strongly about that?

Elvin Box
Oh, absolutely. Yeah, absolutely. Another great mate, Peter Coca, great guy, he got in contact with me a year after, a year after I'd had my operation and we went through it and said, did they give you a scan?

Clare Delmar:
Yeah

Elvin Box
He said no.

Clare Delmar:
And what year was that?

Elvin Box
That was the year later, 2017. He was actually operated on in 2018 but the end of 2017. He was in bits basically, wasn't sure what the analysis was. So I said make sure that give you a transperineal biopsy.

Clare Delmar:
Yeah

Elvin Box
I said because that's actually really great, you know. When I did it under private, general anaesthetic.

Clare Delmar:
Do you find that men are really very receptive to this because they wouldn't be told otherwise?

Elvin Box
Yeah

Clare Delmar:
Yeah

Elvin Box
It's simplicity itself.

Clare Delmar:
Yeah

Elvin Box
One of the things I was getting upset with is that when the medical profession were talking to me, even though I like to think I'm an intelligent bloke, I've got a master's degree.  I had to come out with Jude and say, did that mean, for instance, does that mean you can't get an erection? Does it mean you don't want sex?

Clare Delmar:
Yeah

Elvin Box
I don't really want to be listening to this and you're struggling all the time. And that's what having Jude. By the way, it's another big, big thing. You must take your partner or one of your partners, someone you love, or loves you, because you're not going to hear this.

Clare Delmar:
Yeah, exactly.

Elvin Box
I've told people it took me three times to tell me it was life threatening. Actually, I didn't hear it a third time. It was Jude said three times. Are you listening? No it's not going in.

Clare Delmar:
That's really interesting.

Elvin Box
So I said, you got atto have that and unfortunately he had one of these TRUS biopsies. It's absolutely ridiculous. You know, all they give you is a local anaesthetic and Peter said it was an absolute damn agony.

Clare Delmar:
Yeah

Elvin Box
Well I'm not happy with that, Peter, because when you get a scan, they're going to be actually knowing where there is potentially tumour. So that's not happened. And then I said, whatever happens, make sure they give you a scan, so if they in any way believe it might be out of your prostate, you've got to have another scan to make sure it hasn't gone to your bones.

Clare Delmar:
Yeah

Elvin Box
Which he didn't get.

Clare Delmar:
So I mean, you're right. I mean, what you're saying is that, to be honest, is often seen as the standard of care here. But you're also saying is that it isn't actually offered, you know, across the board to everyone in every place. And as you say, people need to be informed and empowered to ask. So how are you integrating these issues, like the MRI, like the transperineal biopsy, like the sexual health issues, like bringing your partner? How are you integrating these into your lobbying agenda?

Elvin Box
What I'm trying to do and it's going to do more of it now it's getting to the second part of this year. I'm absolutely determined through wonderful people like you Clare giving me the oxygen of publicity in any way, shape or form. So and I get a good support from Movember because they know I'll speak wholeheartedly about the situation. And I'm also I do have some people I know who are good at lobbying. And that's what I'm going to ask from the experts, because I'm absolutely adamant that nobody should damn well die of this, you know, I'm at lengths to people to say, I want you to understand that, yes, for God's sake, please don't tell me I'm lucky to be alive. Don't you think I know that?

Clare Delmar:
Yeah

Elvin Box
For God's sake, can't you see in my face and my voice?

Clare Delmar:
Yeah

Elvin Box
I know I'm lucky. Christ, I'm lucky. And that's why I want to make sure that nobody dies of a tumour inside a gland that's not much bigger than a golf ball. Orange at best.

Clare Delmar:
You're not using the term walnut, which is what we normally use.

Elvin Box
Yeah, it's absolutely ridiculous. There is every opportunity. Please don't go on to me any more about screening programmes. I never said I wanted a screening programme. All I'm asking for to give somebody, number one, they've got to have a PSA test at forty, forty, and then allow them one every year for crying out loud and remind them. Do some adverts about damn thing. And when they've done that. And you think it's.. You give them an MRI scan and you make sure that you give them a transperineal. I don't want any more of these TRUS biopsies. And you make sure that nobody ever, ever, ever does open surgery again as of tomorrow, you dare do open surgery on a person with prostate cancer because you have no chance of saving the nerves that give that person with the prostate an erection again, they're flawed, that's it. You'll probably do irreparable damage also to their continence. I'm not haiving it, Clare, it's absolutely outrageous.

Clare Delmar:
Well, you're hitting the right issues and it's people like you that have to really cut through because as you say, men are often too afraid or too traumatised initially to even ask. So thank you for that. I mean, I think we'll have to do another one of these conversations, because I know you've got a lot to say. I want to thank you so much for speaking with me, because it's always such a pleasure to talk to you. And I really wanted to share this with our listeners. So thanks again, Elvin, it's been really wonderful having you here.

Elvin Box
Clare, thank you. I'm really, really grateful. And it's been wonderful fun talking to you. Thank you so much.

Clare Delmar:
Fabulous. We'll talk again. Further information on Elvin and links to his work with Movember UK is on our website, along with the transcript of this interview and additional interviews and stories about men who are living with prostate cancer. Please visit www.thefocaltherapyclinic.co.uk. Thanks for listening and from me, Clare Delmar. See you next time.

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