I think it’s to help people talk about it. The ones I’ve had have all been very open and very helpful and willing to talk and also prompting, prompting me to talk. I can see in some situations, if I hadn’t been so open, perhaps the conversations would have been harder and it would have been harder for people to cope with. And also perhaps, yeah as I say, I could have done with a little, little more support about, and advance, about the practical implications of what could possibly, what could possibly go wrong. Or perhaps not go wrong, but what the what the implications might be.

Oh I think the message is, it’s not a death sentence. It, yes it is life-changing. Yes, you’ve got to think about it, but think about it; talk about it; talk to people; be as open as you can about it. Because I find that’s been a great strength and great support that all sorts of people that – Yes, I’ve got lots of – lots of sympathy, lots of support from people who can sympathise, women as well, as well as men, who are very sympathetic to it. And where you can, and what’s helped me get through is looking, for the humour in it – there’s always, I’ve always found something to laugh about somewhere, and that’s helped me get through. And look at it positively like that and you know. And as I’ve said, perversely enjoying the experience [chuckles].

I found that when I came out of, when I came back from the hospital they sent me home with a course of antibiotics. And then it seemed that as I got to the end of those, and the wounds didn’t appear to be clearing up very well, so twice I got, I had to have the local GP out to the house who then – two doctors came out at about weekly intervals and both of them, they pre- prescribed different courses of antibiotics. So I think at one stage I had one set of blue pills and one set of white pills and the blue pills had to be taken three hours after meals, every three hours after meals, and the white pills had to be taken every four hours after meals. Trying to work out how to fit all those in was, well I gave it to an A-level maths student to work out [chuckles].

How long before the scars truly healed? I’ve only really felt comfortable with the, yeh with the penis and the skin graft in the last, in the last couple of months. So it’s now, it’s now October. I went to see the consultant about three weeks ago, and he said, How are, how are things feeling?’ I said, Now for the first time in the last month or so, I’m feeling it is my penis back and it’s not yours that you’ve been operating on. So that’s when it feels as though it’s healed. It looks, it looks small. It doesn’t look as though there’s any stitches. The colouration looks normal flesh colour and so that’s – yeah. But that’s about the time it starts to feel mine again.

Yes that was the most painful bit cause I found I still got the, still got your nocturnal, your early morning erections, and that was the reason I didn’t want my wife in the bed because they, because of course I still had all the stitches from the skin transplant round the edges. And I found that I got those erections and they were still pulling they were pulling the stitches and that was very painful in the morning [chuckles] and you know, and I had to find all sorts of ways of, of thinking of other things to try and get that erection down as quick as possible [chuckles]. So it was happening but it was very painful and that was probably the most painful bit of the whole experience.

Always leading up to appointments I get very sensitive. I start to feel things are going wrong. I’m very sensitive to any itch or any pain in that area. So I always get a bit more worried in the, in the fortnight before the, before those appointments. So, once they’ve gone, you sometimes actually go to the appointment and he says it’s fine and you come back and you feel a bit disappointed because – I knew there was something wrong that he was going to fix’ but [chuckles]. But, no, yeh, with all, so in between it’s fine. Getting close to them you get a bit nervous. You get more sensitive and you convince yourself that there’s something going wrong.

I was lucky because I’ve got a, there’s a sick scheme at work, so I was off on, I was off on full pay for those three months. And I’ve since discovered that I was only actually entitled to two months pre-pay and the next month was optional, but I think because I’d been open with them and they knew how serious the operation was, they were quite happy to carry on paying me. There was, so I mean that I normally do overtime and get another sort of 15 or 20% of my pay in overtime, which I wasn’t able to do, so, I did lose that. But it we’re – but of course the upside was I wasn’t able to go out and spend money in that time so I think it probably balanced out.

What struck me and I hadn’t been prepared for was just how much energy it drained from me. That it took me, you know the nurses and the consultant, or the doctors had been saying, and always looking on the bright side I think, think oh you’ll be out, you’ll be painting the house in two weeks’ time. Well it was, it was three months before I was, felt able to get back to work. So, and there were a couple of family events in between that I needed quite a lot of help to get to’ my daughter had a graduation ceremony at the end of January, and I was able to get to it, but I needed my brother to come – I needed someone else to drive us down there and I needed to rest before and immediately afterwards, and go through it at half pace, so… And then, let us see, I was back to work after about three months, and I’ve probably – I was going back part-time to start with. I went back in March and probably only now, about a year later, am I feeling that I’ve got back to my pre-work level of energy at work – pre-operational level of energy there, soit’s been about, yeh – so it’s been a long go. it’s been quite an interesting time [chuckles], but learnt a lot about –learnt a lot about people on the way.

Right, so about this time my feelings generally was actually being quite excited by all the, the all the technologies and all the new operations, all the new experiences that were going on. So it was really quite fun for me in a strange way. And I think it was the family and friends that were getting err, getting more nervous. It was a time also that I had to make arrangements at work for time I was going to be off so I had to tell them you know what was happening and I found the best way with that was to actually be as open as possible with people, certainly with my immediate boss and the HR department. I had to tell them formally and make arrangements with them.

Has there been any impact of the treatment on your confidence or self-esteem?

Surprisingly not. I mean, I thought it might do and I was prepared for it. But I think the way that I’ve approached it by looking at it; by you know facing it; trying to see the humour in it; trying to talk about it, telling people about it rather than hiding away, then I think that would make, make a difference. If I’d been ashamed or afraid to talk about it, I think it would have made me – yeah, I would have found it harder to deal with. But by looking at the people, I’ve now got. You know, I think people see me as, you know, Tim’s had that operation done that none of us would like to have done, and so I’m officially brave, you know. I’ve gone for those points [chuckles].

How about your sense of masculinity?

Well, yes I suppose that’s affected, that’s affected a little. If you look at it, look at it logically and objectively, I’ve got a wife who’s quite happy. As I say, our sex life is back to something approaching normal or something slightly different and certainly no worse than it was before. Perhaps after nearly thirty years of marriage then perhaps things had got a bit, bit routine, a bit regular, and this has, you know, forced us to spice things up. So that’s, so that’s helped, yeah, so that’s a positive reaction on that line. Yes that’s the bit that, all the bit that thinks, you’re still –you may be in your fifties and married thirty years, and you still want to go out and think, think Oh that pretty girl down the road, if yeh, she’s really just dying to, for me to ask her. And then you think, No that can’t happen now,’ or, it probably won’t happen. It would be very different, and perhaps you haven’t got something to offer other people. And so that does change your view of life a little bit. So yes, so it has had some effect. But practically and even realistically, then the effect isn’t as big as I thought it would have been.

The actual operation day, the operation was timed for the afternoon. But they wanted me in the hospital early in the morning because they were going to do a radioactive trace on my lymph nodes. So rather than take all the lymph nodes out, they were going to just find the ones that were going to be affected on those. So I had to be in the hospital ready to go at 8 o’clock in the morning, which was – which meant a very early start. And again at that stage it was quite fun because I had to go around and find the department of nuclear medicine and told all my friends that’s where I was going, where I was going to be, and that sounds really impressive . So that went, that went through, I had to have that scan early in the morning, and then it was off to the opera – off to the, off to check in for the actual operation. The… that all went smoothly, meeting the, meeting the consultant again, going through what the operation would be, meeting the anaesthetist who was, you know, very keen to explain what anaesthetics I’d have and what pain killers they’d give me, during and after the operation – no that was fine. So we got ready for the operation, got dressed in my gown, it was and the… at the hospital – they actually like you to walk to the operating theatre. So there I was in my slippers and gown walking down, or being guided down these corridors, and then got onto the what felt like a trolley to, just to be in the antechamber to the operating theatre, waiting for the anaesthetist to come out. And at that point the anaesthetist came out, and I thought, Here we go; I’m going to go have the operation. Next thing I know I’ll wake up in the bed and it will all be over. And he said, There’s been a slight hitch. We were talking to the consultant and he didn’t like the results of your – of the trace on your lymph nodes. Apparently they’d only shown up as draining to one side, rather than the other, rather than both. So what he wanted me to do was to go back and have that trace redone, which meant I had to get off the trolley, back walk around the hospital in my nightgown and slippers, back to the department of nuclear medicine, have all the trace redone, wait for the results and get back up, get back up to things. And at that point it started to cease to be fun, cause I hadn’t, I obviously hadn’t had anything to eat or drink since the night before. It was getting to 3 o’clock in the afternoon and I was getting a bit tired and a bit fed up and just wanted it to be over at that point. . Anyway from there we got back, and persuaded the consultant that this was generally – was what was happening, he was happy, and we went in and had the operation. And the next thing I knew was, you know, about five hours later I was, you know, coming round in the recovery room and back then wheeled back to the hospital ward, which was, which fine, back in the, back in the ward, and quite nice with a catheter in and a nice hospital bed with pain killers and drugs; everything, everything you wanted – a morphine drip if you wanted it, under my control. And that was the, that was the hospital.

Then as we got closer to operation day, obviously the, my family and people started to get a bit concerned, get a bit more worried, you know, and I don’t think I necessarily appreciated it at that time how worried some of them were, especially my children. I’d – I was trying hard to sort of keep them involved and let them know factually as much as possible because I thought that if I don’t tell them things, their, their imagination will work overtime and things will seem, will sound worse than they are. So it was keeping them involved, and then it was making sort of practical arrangements as well.

Did you discuss the lump with anybody else?

I mentioned it; I mentioned it to my wife. I was saying, when she was saying Look, you really need to go and get your blood pressure sorted. You really need to take that seriously. And I said to her, at that point I said to her, Well, actually, there may be something a bit more serious that I need to need to deal with. And that was how the subject came up. And I took it from there. And then, and then there was obviously the point at which it became obvious to her that the, the growth was there. And so then we had to talk about it and deal with it from there.

Did she provide any encouragement to act on your fears?

Did she I think. I think she was supportive, but I think at that point when I’d realised ok that it was perhaps prostate, but that it was something that I had to talk to the doctor about, and once I’d set things in motion. Then really, it all took care of itself from there then once I’d faced it, which it was the doctor, then the blood tests, then the results, and everything sort of flows through from there. And so, but I don’t think I could have done anything to make it go, go faster or slower from that point.

The support that I had was again – comes back to the, I had the phone numbers of the uro-oncology nurses who were, who were very helpful. Quite often in a practical point of view, when I felt that thewhen I felt that appointments weren’t coming through quickly enough, or that we weren’t seeing the right people. They were – they were very good at sorting those out and getting back to me. And when I first met them they were, they were both very good at just sitting down and talking through, you know just how serious penile cancer was, or how rare it was, and giving me information about other cases they’d seen, which helped give us some context to it.

I remember once we’d been told, once we were told that was the, that was the cure, that was what was going to happen; and then it was to the actual surgeon, the consultant who was going to do the operation. I thought that was the question that I went in wanting to know, and I thought actually I want him to draw – I want him to draw me a diagram. Cause he’s got – he had in his notes lots of diagrams of the penis and the where the growth was and I wanted him to see, to give me a sort of, you know, like a cut-here’ line if you like, sort of, you know, he couldn’t, he said he couldn’t give me an exact, I imagine because he didn’t know, he didn’t know until he actually started the operation how far, how far the growth had penetrated, or whether it had gone into the penis or not so. But I was, I was given a rough idea and in my case we knew that it wasn’t going to be a complete [hesitation] removal, we knew, I knew it was really from the glans upwards, if you like, that it was going to go. And it turned out to be roughly what it was.

Having had the diagnosis from the consultant, the next stage was waiting for the – was another appointment back at the hospital, booking in for an MRI scan, going through pre-medical things, and that’s the point at which I felt I was really in the medical system, that I was under their care so the disease was under their care. So that wasn’t really my problem. I had to go through it. I’d just turn up to the appointments, and a lot of interesting appointments – the MRI scan and such. And also that’s the point I learnt then that penile cancer was quite rare. And the nurses and the doctors were also quite interested. And I found that actually having something rare felt, I always felt I was getting sort of special attention. They were all, they were all interested in what they were doing. They were all – it wasn’t the routine appointment for them. So, yeh I started to feel quite special actually in that way [chuckles]. So ok, so we had the MRI scan. We had to go back for the results of those.

The actual operation day, the operation was timed for the afternoon. But they wanted me in the hospital early in the morning because they were going to do a radioactive trace on my lymph nodes. So rather than, rather than take all the lymph nodes out, they were going to just find the ones that were going to be affected on those. So I had to be in the hospital ready to go at 8 o’clock in the morning, which was – which meant a very early start. And again at that stage it was quite fun because I had to go around and find the department of nuclear medicine and told all my friends that’s where I was going, where I was going to be, and that sounds really impressive. So that went, that went through, I had to have that scan early in the morning, and then it was off to the opera – off to the, off to check in for the actual operation.

And from that point, yes, while I was waiting to see the consultant, yes the symptoms were getting, were getting worse. Yeah, I was dribbling. I was leaking a bit more than, after weeing. It was starting getting a bit embarrassing. Then yeah, so we got to see the consultant in the end and again that was eh about six weeks after I’d seen the doctor. So it was a fairly quick appointment. And you start to think, Ok, if I’m seeing the consultant this quickly, you know, perhaps it is something really serious, because you’re quite used to hearing tales of, you know, you see a consultant in eight months’ time or nine months’ time. So you got to see one in that time, you, they obviously think there’s something going on. So I got to see him, he was very nice, very pleasant. Had a look and he had a lot of prodding and poking around. I suppose, yeah, by that time I was starting to get used to people prodding me down there, so… He was very chatty, very helpful, and he said, Right, I think there is something that we need to look at. it’s probably nothing, but you do realise we’re talking about penile cancer here. And he said, Oh, oh there’s just a very slim chance. And I said, OK, what sort of chance is it?’ And he said, 10%. And to me that suddenly started to sound much more than a slim chance. It started to be serious. And there was definite chance there.

Ok, so having seen the consultant, he’s referred me for a biopsy, and again said, Look, I’m going to book you into hospital for a biopsy and if you don’t get the appointment within a month, ring me, and I will make sure it’s done. So, again that’s another, another danger sign, isn’t it, that something definite coming [chuckles]. Again, you, you book in for a minor operation and if it’s not urgent, six months is not unusual, is it to wait? If you’ve got to have it in a month, it’s urgent. The consultant wants to know. So then we went in, yeah, we got the appointment, about oh, again about a month or so after that. And so it’s about – so we’re talking about, just about a year ago now. I went in for the biopsy. And then, that operation was fairly ok. And that was when I first got used to, sort of, the nurses prodding me around, putting catheters in and out, and things like that yeahSo one of the funny stories was when you to have, I went to have the biopsy and came home for a couple of days with a catheter in and had to go back a few days later to have it taken out, and the nurse who took it out turned out to be one of my former pupils. I last saw her at the age of fourteen sitting in my maths class and there she was trying toand she goes, Hello, I know you [chuckles]. I’m going to take your catheter out. I always enjoyed your lessons though. And I was very relieved to hear that because the, because the yeah, because the consequences if she’d wanted to take revenge there, she’d got a great opportunity. But Ok, I mean that was probably the way I coped with it as well at that stage was to, was to you know see the funny side, look at it and face it head on, I think.

I started to notice a growth right from the end of my penis. It looked like a sort of tiny wart. So when I went back to see the doctor, talking about the prostate cancer, but those tests had come back negative, but he wanted to do a, an inspection finger up your bum inspection, so I had to do that. And I must admit that was the, that was the start of the sort of nervousness if you like, the first time you have to [hesitation] drop your trousers to the doctor that’s [laughs]. You’re quite, quite embarrassed and you don’t really want to talk about it. And I think perhaps if I hadn’t been going to see him about the blood pressure, I probably would have waited a bit longer before I plucked up the courage. So while he was doing the, the checking the prostate, I just said to him, Look, can I, I think I’ve got another problem, you know on my penis. Can you, can you have a look at that while I’ve, while I’ve got my trousers down?’ So that was, yeah ok, that was another embarrassing moment. I’d got, I’d coped with the finger in the bum, but looking at your penis, I don’t think any man had really seen it [chuckles] ever. So he looked at that and he obviously asked a lot of questions, you know, Do you think it’s sexually transmitted? Have you been playing away or anything? Well, I knew I hadn’t so that was fine enough, but. So his reaction then was, Ok this could be something, something nasty.

It was just over a year ago, about a year and a half ago, and I’d slowly been having problems going to the toilet, weeing usually. Usually, it was after I’d been to the toilet, there was dribbles coming out. I had to go out to go straight back again. And I did a little bit of reading around and it fitted the symptoms of prostate cancer. I wasn’t too worried at that stage but ah, I thought I’d mention it to the doctors. I was seeing the doctor anyway for blood pressure, so I just mentioned it while I was there. He then sent me off to have blood tests and investigate that. Those all came back negative when I went to see him again. He, but in the meantime, problems slowly got worse, and it got to the stage where when I was standing to, standing up to wee, it was just taking ages and ages to pass water and I was thinking, the next time I come I’m going to bring a book here to [laugh] it’s not going to come out again at all next, one day. So I went back to the doctor and then, well about that sort of time, I started to notice a growth right from the end of my penis. It looked like a sort of tiny wart. So when I went back to see the doctor, talking about the prostate cancer, but those tests had come back negative.

It was just over a year ago, about a year and a half ago, and I’d slowly been having problems going to the toilet, weeing usually. Usually, it was after I’d been to the toilet, there was dribbles coming out. I had to go out to go straight back again. And I did a little bit of reading around and it fitted the symptoms of prostate cancer. I wasn’t too worried at that stage but I thought I’d mention it to the doctors. I was seeing the doctor anyway for blood pressure, so I just mentioned it while I was there. He then sent me off to have blood tests and investigate that. Those all came back negative when I went to see him again. He, but in the meantime, problems slowly got worse, and it got to the stage where when I was standing to, standing up to wee, it was just taking ages and ages to pass water and I was thinking, the next time I come I’m going to bring a book here to [laugh] it’s not going to come out again at all next, one day. So I went back to the doctor and then, well about that sort of time, I started to notice a growth right from the end of my penis. It looked like a sort of tiny wart. So when I went back to see the doctor, talking about the prostate cancer, but those tests had come back negative, but he wanted to do a, an inspection finger up your bum inspection, so I had to do that. And I must admit that was the, that was the start of the sort of nervousness if you like, the first time you have to [hesitation] drop your trousers to the doctor that’s [laughs]. You’re quite, quite embarrassed and you don’t really want to talk about it. And I think perhaps if I hadn’t been going to see him about the blood pressure, I probably would have waited a bit longer before I plucked up the courage. So while he was doing the, the checking the prostate, I just said to him, Look, can I think I’ve got another problem, you know on my penis. Can you have a look at that while I’ve, while I’ve got my trousers down?’ So that was, yeah ok, that was another embarrassing moment. I’d got, I’d coped with the finger in the bum, but looking at your penis, I don’t think any man had really seen it [chuckles] ever. So he looked at that and he obviously asked a lot of questions, you know, Do you think it’s sexually transmitted? Have you been playing away or anything? Well, I knew I hadn’t so that was fine enough, but. So his reaction then was, Ok this could be something, something nasty. He said. He gave me some ointment to put on it, and said, If it doesn’t go away, come back, come back within, come back in ten days. Whatever happens let me know. So I think he obviously at that point realised it could be something nasty. And I think I’m quite grateful to him for actually sort of taking it so seriously at that point. So yes, I took the ointment and it eased, there was a slight pain on this growth, and the ointment actually eased the pain, which was quite interesting. So I thought it was doing something. But obviously it wasn’t reducing in size at all. So I went back to see him after, I think it was in two weeks. But I tell you that’s close enough to ten days for a man to go to the doctor isn’t it. And from that point he said, Right, I’m going to refer you to a consultant. He says, I think it does need to be checked out.