Insights from the Recovering Man

A conversation with Mish Middelmann, author of the "Recovering Man" blog

Joining me today is Mish Middelmann, aka “Recovering Man”, the title of the popular blog he produces on his experience with prostate cancer. Mish is an organic veggie gardener, prostate cancer survivor and convenor of the global Recovering Men prostate cancer support group. His blog at www.recoveringman.net very candidly chronicles his own prostate cancer journey and those of others affected by prostate cancer. In his professional life he is a systems coach helping leadership teams and organisations worldwide embrace both change and diversity and inclusiveness. Prior to this he was the co-founder and CEO of a software start-up in Johannesburg, South Africa. He’s here to speak with me today about the insights he’s gained through his own experience of prostate cancer and working with hundreds of others through his support community.

 

Clare Delmar

Hello and welcome to On Focus, brought to you by the Focal Therapy Clinic, where we address issues facing men diagnosed with prostate cancer that are little known, less understood, often avoided and too often ignored. Prostate cancer is the most commonly diagnosed cancer amongst men in the UK. And with this sombre fact comes a multitude of challenges and opportunities. I’m Clare Delmar. Joining me today is Mish Middelmann, aka Recovery Man, the title of the popular blog he produces on his experience with prostate cancer. Mish is an organic veggie gardener, prostate cancer survivor and convener of the global Recovery Men Prostate Cancer Support Group. His blog, Recovering Man, very candidly chronicles his own prostate cancer journey and those of others affected by prostate cancer. In his professional life, he’s a systems coach, helping leadership teams and organisations worldwide to embrace both change and diversity and inclusiveness. Prior to this, he was the co-founder and CEO of a software startup in Johannesburg, South Africa. He’s here to speak with me today about the insights he’s gained through his own experience of prostate cancer and working with hundreds of others through his support community. Mish, thank you so much for joining today. It’s an absolute pleasure to have you.

Mish Middelmann

Thank you so much. It’s great to be here. And I love what you said about how this is so often undiscussed. So thank you for reaching out to actually discuss the undiscussable.

Clare Delmar

Yeah, we like that. We like that. So I think we’re going to be off to something really interesting and insightful here. I mentioned in my intro about your blog, which is, of course, how I found you. So I want to just start off by commenting that in your blog you’ve talked in some detail about support for the non clinical aspects of living with prostate cancer. And I’m really interested in hearing more from you about this and what you’ve learned from the many men you’ve spoken with about not so much per se the treatment which we can get onto, but the so called non clinical aspects.

Mish Middelmann

Well, thanks. I mean, I think the deal is that there’s a kind of an alliance between us that are diagnosed with cancer and the people who diagnose us, which is we all want to fix it. We just want the thing out of there. And then after that, some treatment has been done. If we’re lucky, we don’t have the cancer anymore. If we’re not so lucky, we do. And there’s a whole bunch of other stuff going on. What you just summarised as the non clinical aspects. And I think most men after their first treatment just feel lost and alone. I certainly did. And it’s a little bit like you’ve taken this great big journey to New York and you arrive at JFK and it’s very exciting, but you would know and I’ve experienced that, when you arrive at JFK, once you’ve got your baggage, you’re dumped out on the street. There’s an arrival hall, but it’s really just like a passageway. It’s just like, get on with your life now.

Clare Delmar

Yeah. I was just going to jump in and say, unless you’re flying first class, but yes…

Mish Middelmann

That’s an experience I have yet to have.

Clare Delmar

Absolutely. And most of us, too.

Mish Middelmann

But the point being that we don’t have much of a roadmap. We are feeling lost and alone. We’ve kind of had a rug pulled out of our sense of manhood, our sexual identity. We’re kind of, like all over the place. And in my experience, the clinician who’s done this amazing, magical treatment for me is not actually optimised for dealing with the stuff that I’m dealing with. And he was frank with me when I asked him. He said, look, you already know more about this recovery aspects than I do. I’m, in my case, a robotic surgeon. That’s what I’m good at and everything else. It’s kind of like we’re out on that curbside at JFK, but there’s no cabs and there’s no buses and there’s no shuttles, and your friend hasn’t come to pick you up. You’re just staring at the blank tarmac.

Clare Delmar

Yeah. Kind of like, where do we go from here? So in your discussions with all these men that you speak with, and I presume their partners, too, on occasion, do you think that there is an ideal model of support for so called non clinical aspects and for men going through prostate cancer diagnosis and treatment?

Mish Middelmann

I think there’s so much that we can do. When we say ideal roadmap, it sounds like we can have a perfect fix. And really the start of the ideal roadmap for me is it’s about adaptation rather than a perfect fix. There’s a small proportion of us who do get a perfect fix, and lucky for them, but most of us, we are adapting to new bodies. And a lot of what I think the integrated care map needs to look like is a bunch of resources to help us adapt to our new bodies and to care for our bodies because we all know the cancer cells… there are going to be more mutations in our cells, even if you’ve taken every single one out of our bodies in the treatment. And so we need to have healthy bodies to keep the cancer from really coming back in any significant way. You mentioned partners. I want to start there because that’s kind of probably where the resources started for me was having a supportive partner. I think it’s huge to have a supportive partner, and it takes an enormous amount for both partners to be able to talk about. It’s often called the divorce disease or the couple’s disease because it’s so easy for either partner, male or female, but either the one with the cancer or the one without the cancer to just be freaked out and said, my partner is not what they used to be, I’m out of here. Or for the owner or the ex owner of the prostate, the one who’s been diagnosed to kind of go, Well, I’m not the man I used to be, so I’m out of here. That’s the bigger context, I think, of the care plan. Then there’s so much that is known. And all the men I talk to say that nobody spoke to them about their diet, their physical fitness and exercise, their mental health. It’s rare to even be put in touch with a physiotherapist or physical therapist. And it’s even more rare to have anybody kind of engaged with the kind of issues that are needed to develop a sexual inventiveness. Because sex is different when your body is different. And men particularly, we aren’t trained for that. We have this very simple kind of sexual function. And suddenly that thing that used to kind of be in a certain way, it doesn’t function that way anymore. And it’s about being inventive and recreative and how do you make love rather than how do you just kind of poke around and it’s all of that. There’s tonnes known about that. It’s a range of care and help and conversation and adaptation that’s needed. But a simple roadmap would help.

Clare Delmar

I mean, you mentioned about the changes in your sexual identity and your sexual function, to put it bluntly, it’s a change in your sort of status. You’re now dealing with something called vulnerability.

Mish Middelmann

Yeah, that’s the bottom line.

Clare Delmar

I think in my own conversations, and I’m sure you’ve had them too, and maybe even experienced it. There are so many of these resources out there which you pointed out, it’s how you kind of package them. Which actually leads me to another question. We agree that there are so many of these resources out there, but it’s almost like a cruel irony that we live in this world that there’s so much information out there, it’s almost information overload to coin the term. And yet so many men feel unable to access and acquire the information they need to make the optimal choices about their care. And I’m interested what you’ve learned from your conversations about how men do seek the information and the support they need for some of the issues that you’re describing.

Mish Middelmann

Thanks for raising that, because this is really one of my biggest, really ongoing research interests is what enables us to get the information, which, as you say, it’s all there somewhere. What enables us to get it and what enables us to act on it?

Clare Delmar

Exactly.

Mish Middelmann

Getting it, we can Google, but I’m particularly well resourced, but it took me about a year to find the stuff, and now a lot of it is on my blog and it’s all quite familiar. But what I’ve noticed in working with other men is a lot of people acquire information more through conversation and stories than through sort of download. And so that’s why I created my blog the way I did. I’m telling my own story in excerpts, a bit like Charles Dickens, another episode every week or two, like a TV series, and I’m getting other people to do the same. And also in the support group, we just talk and we have a topic, but it’s very loose. And what I’m noticing is that men and their partners kind of pick up on stuff when they’re ready. And that’s so contrary to the more clinical sort of model of like, now the treatment, there’s a date, there’s a hospital visit. I don’t want to put all the blame if I’m suggesting that on the clinical establishment, because what I see is we’re like hand in glove. The clinical establishment is, and to its credit, very thorough about that clinical model. And we, as the consumers of that service, actually love it. We just want a fix. So many men say to me, I just want that cancer out of me. I don’t really care about anything else. Don’t tell me about urinary control and sexual function. Just get the cancer out.

Clare Delmar

Yeah.

Mish Middelmann

So we come in with this deep desire for a complete solution, and often our clinical practitioners come with the equivalent desire to give us a perfect solution. And then a lot of stuff gets lost in the rush into like, this is the quick fix. There’s a lot of depth that’s needed. There’s a lot of examining, understanding, adapting, as I keep saying, and I think the diagnosee and the diagnosor are both not naturally tuned to doing. We’re both naturally tuned to just let’s get the quick fix and get out of here.

Clare Delmar

Yeah. I mean, it’s interesting because I can understand that mentality. But I wonder if you’ve noticed how much it varies across different types of men, for lack of a better term. And one of the things I’m particularly interested in is do you find variations in the age of men when they first get their diagnosis?

Mish Middelmann

Not being a clinician, I can’t give you data on that. But my gut feel is that we’re getting diagnosed younger and we’re living longer. So I felt like I was on the cusp of this. I was diagnosed at 61, and there was a little bit of that voice that sort of like you’re an old guy. Sex is like for young men, just get rid of the cancer. And my urologist did sort of say, I think you’re too young for that approach. But I could feel he was on the edge of saying it’s a sort of minimal care because you’re old now. I think the two things that are happening now are that we’re living longer. So even if we are only diagnosed at 70, we still got the chance of living for another 20, 30 years or more. And secondly, that we are getting diagnosed earlier, thank goodness. So I think that the demands for quality of life can only increase from here. So I’m still relatively polite about it. But what I hear from the men I talk to is just extreme anger. Whether it’s all true or not, their belief is, the doctor lied to me and said I would be fixed, and now I’m not and I’m angry. And he’s taken away my joy of sex or he’s taken away my just joy of simply walking without a nappy. That’s the language I hear out there. It’s anger about what clinically they call quality of life issues, which is really all aspects of health, other than the very specific thing that the treatment addressed. To me that’s all aspects of treatment. It’s all clinical. It’s like how’s my head, how’s my heart, how’s my sexual function? Those all clinical things, actually. It’s just that they’re not always treated by surgery. Some of them are treated by physiotherapy or psychotherapy..

Clare Delmar

Counselling…

Mish Middelmann

Or visiting my conversation group.

Clare Delmar

So then I was going to just pick up on that because I hear similar things. People who come to our clinic often are also angry for various reasons, and some of them correlate with what you’re saying. And I just want to test you on an idea. Do you think that some of these men feel that they’re stereotyped? Do you think that they feel like, well, I was considered too old, which is you’ve touched on that already, or I’m a gay man, for example, or I don’t have a partner or some way that they might be categorised, that they feel that they’ve almost been stereotyped. And I just wonder about that because you’ve met a lot of men who have undergone this treatment and this experience. So I’m wondering if that’s something you’ve seen. And do you think it’s been seen to impede any kind of progress in their care?

Mish Middelmann

Yes, and thank you for mentioning it. When you mention this, the biggest one is black men who are much more at much higher risk of prostate cancer than anyone else than any other men and yet get less treatment. And that’s a much bigger systemic issue. Right. That’s about systemic racism. It’s not just about the clinical establishment. And I think gay men often feel like and I noticed so much of the research is heteronormative, so much of what’s written and the International Index of Erectile Function, which was really popularised by Pfizer and Viagra marketing people. It’s all about having conventional heterosexual sex with your female partner. And it’s off. It’s time. It’s long past its sell by date. And it’s highly off putting to anybody who is sexual and makes love in ways that are different to the heteronormal kind of stereotype and that’s people of all genders and sexualities and races and so on. So, yes, there’s a tonne there. And underlying those specific categories is also just a sort of a broader category that I think is lurking behind all of these is kind of the stereotype of the broken man.

Clare Delmar

What do you mean by that?

Mish Middelmann

Well, yeah. I don’t know how much this comes from the practitioners and how much comes from the diagnosees. But I noticed a lot of us feel like, well, until now, my life was about possibility and my male identity is sort of I’m driving, I’m energetic, I’m an initiator. And now in a way that’s very dear to my heart and my groin, I can’t do that anymore. And I just feel broken. And I feel like I’m no longer… I think a lot of men feel like they no longer are men. I feel like I’m just a different man. And my manhood is way more than my erection and my sexuality is way more than that as well. And my libido is way more than sexuality. But I do think that there is a sort of underlying stereotype of what it is to be a man that is not serving us. I have a friend in the UK, a gay man in the UK. He keeps saying being a man often gets in the way of being a man with prostate cancer. That male stereotypes kind of block us.

Clare Delmar

Right.

Mish Middelmann

And I think he’s very wise and I think he’s accurate. And I think that’s some of our work. So when I said I’d love to have integrated care, what I don’t believe is it’s all about someone giving us stuff. I think there’s a lot of us about us being empowered and empowering ourselves to kind of claim the way forward. And that then is infinitely varied. We’ve mentioned some of the variations of race, of sexual preference, of age, etc. But actually, each person creating our own roadmap is unique. And that’s my other big interest is how do we empower ourselves? How do we help other men and their partners be empowered to find their way through this, to actually create the roadmap? It’s not just about information and it’s not just about treatment. It’s also about adaptation. And it’s a lot about dashboards. How do we get enough information and feedback about our health so that we’re getting feedback that we can take action on?

Clare Delmar

Yeah

Mish Middelmann

Not just saying I must go to a professional and have them diagnose me.

Clare Delmar

Right. Or have it categorised in a term like personalised care or something that. Yeah, it is a little bit more holistic, isn’t it? But I would say that it’s precisely by having conversations with people like yourself and getting these stories out there that is the beginning of all of this. And you’ve done a wonderful thing with your blog, and I congratulate you on that and wish you all the best in taking it forward. And also want to thank you very much for joining me today. I’m sure our listeners will have found it very stimulating, very insightful, and hopefully we’ll do it again.

Mish Middelmann

Thank you so much. I’ll just give credit to Chimamanda Adichie, who says, beware of the single story. We need many stories. And that’s what my blog is doing. And if you’re listening to this and you’ve got a story. Get in touch.

Clare Delmar

I’ll make sure that people do. Thanks. Once again. It’s been a pleasure. A transcript of this interview and links to more information about Mish and the Recovering Man blog are available on the programme Notes on our website along with further information on diagnostics and treatment for prostate cancer, as well as additional interviews and stories about living with prostate cancer, please visit www.thefocaltherapyclinic.co.uk and follow us on Twitter and Facebook at The Focal Therapy Clinic. Thanks for listening and from me, Clare Delmarm, see you next time.

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