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Mark - Interview18

Age at interview: 48
Age at diagnosis: 46
Brief Outline: Mark had been feeling ill for five months with urinary problems. After going to A&E in 2009 he saw a urologist who without a detailed explanation performed a dorsal slit. Now, with a diagnosis of cancer he went on to have a total penectomy and subsequent lymphadenectomy.
Background: Mark is a single white male with two children. Mark works as betting office manager.

More about me...

At 46 years old Mark had been ill for five months. His penis was hard and misshapen, he was in severe pain, had a lump at the base of his penis and had haematuria and pyuria (blood and pus in the urine). He had told neither his family nor friends but had confided in his female work colleagues who had pleaded with him to seek help. Whilst getting ready to go to work one day he suffered difficulty with urination. He went to his local A&E department where he was referred to a urologist. He saw the urologist that day who gave him the news that he would need an urgent operation the next day. He was told he was to have a dorsal slit but the urologist offered no further explanation of this procedure. When post operatively he saw that his penis had been slit from base to tip of his foreskin, he collapsed.

Mark was told that the tissue that had been excised was ulcerated and cancerous and that the surgeons had been unable to remove it all. He would have to go to a Specialist Penile Cancer Centre for further surgery – no one explained why. He was discharged into the care of the district nurses and four weeks later he was seen at the Specialist Penile Cancer Centre where he was told he had penile cancer and would need a total penectomy. He thought he was going to die. He underwent his penectomy and six weeks later a lymphadenectomy. This second operation he found more painful and traumatic than the first. Unfortunately Mark had to readmitted twice when his wounds developed infections. On both occasions he was nursed in isolation for a number of weeks.

Two years on he considers his major problems to be behind him. He still gets very tired and feels completely emasculated. He won’t wear jeans or shorts for fear that people will notice he doesn’t have a penis. He sits down to urinate and can’t bring himself to look at his genital area. He no longer has a sex life and shuns romantic involvement. But he has his life, something he is extremely grateful for. He has re-prioritised his life and realises that material possessions are no longer as important to him as they once were. He wants to start raising money for the department where he received his treatment.

He is currently seeing a counsellor and awaiting reconstructive surgery (this entails undergoing up to five operations). It will be another two years before he gets the ‘all clear’.

 

 

Mark's symptoms of pain, a semi-permanent erection, a white discharge and blood in his urine progressively worsened until he found he couldn't urinate, which left him extremely frightened.

Mark's symptoms of pain, a semi-permanent erection, a white discharge and blood in his urine progressively worsened until he found he couldn't urinate, which left him extremely frightened.

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I admitted myself to the local hospital on the 8th of October 2009, and… I’d considered that I’d been ill for… way before maybe five months before that. It manifested its way, it was strange really in as much that… it looked like, that I had a permanent semi-erection. The penis wasn’t soft. It was… it was hard to the touch. The skin... was... sort of adhering itself to something that was underneath it. It was the strangest thing. And indescribable pain, the pain got worse on the approach to the 8th of October. It was manageable... three or four weeks before but got progressively worse. I was... finding it difficult to urinate, I was urinating... blood... and copious amounts of blood as well. And a white fluid, I don’t know what the white fluid was. And... I should have… I should have gone... three or four weeks prior.

But I didn’t. They... said that when I got there... that they were pleased that I’d actually gone in reasonable time. But I, on the morning of the 8th of October I woke up with every intention of going to work. And at that time I was finding it sufficiently difficult to pass water. That I was getting in the shower, and I was, I was trying to urinate in the shower and I couldn’t pass any water at all. And I was absolutely terrified, because, everybody in the morning you want to get up and you empty your bladder, and I couldn’t do it… I kept calm, as calm as I possibly could. And I jumped in the car and got myself ready for work, and I drove to the local hospital. And admitted myself into A&E.
 

 

Mark thinks that he should have sought help a few weeks before he went to hospital; his penis...

Mark thinks that he should have sought help a few weeks before he went to hospital; his penis...

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I admitted myself to the local hospital on the 8th of October 2009, and… I’d considered that I’d been ill for… way before maybe 5 months before that. It manifested its way, it was strange really in as much that… it looked like, that I had a permanent semi-erection … the penis wasn’t soft. It was… it was hard to the touch. The skin... was... sort of adhering itself to something that was underneath it. It was the strangest thing. And indescribable pain, the pain got worse on the approach to the 8th of October. It was manageable... 3 or 4 weeks before but got progressively worse. I was... finding it difficult to urinate, I was urinating... blood... and copious amounts of blood as well... and a white fluid, I don’t know what the white fluid was. And... I should have gone... three or four weeks prior.

 

Mark doesn’t get frightened easily but this scared him. It got bad very quickly. He was in a...

Mark doesn’t get frightened easily but this scared him. It got bad very quickly. He was in a...

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I think I was frightened. I think I was. And I’m not anybody who’s frightened of situations. People don’t frighten me. But I was, it got very bad, when I say to people, it got very bad, very quickly. And I said that to my surgeon. It was manageable. And I’m talking now, let’s say 4, 5 weeks before I went in, it was just a slight, it was just a slight lump, a very slight lump. It wasn’t painful. It was one of those things where I think we’ve all... ‘oh it’ll go’. So I adopt that attitude. But it, it didn’t go and it, and it started to grow very quickly. And like I said it was, it was, it was, described as a squamous cell carcinoma. What that is I don’t know, but it grew very quickly. Under the skin, it was rock hard, it was as hard as, hard as iron, it was solid. And like I said it was… it got very bad very quickly. And it got to a point, it sort of runs over you and all of a sudden you’re in a point where you know 2 weeks prior to going you’re in a terrible state, you are in a terrible state and you can’t bring yourself, be man enough about it, to bring yourself to go and deal with it.

 

Mark went to A&E where a lady examined him. He was examined by five or six people during his visit.

Mark went to A&E where a lady examined him. He was examined by five or six people during his visit.

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And I jumped in the car and got myself ready for work, and I drove to the local hospital. And admitted myself into A&E. Explained to the lady at the back of the counter what the problem was, to the best that I knew. And I’d also grown a lump, had grown to the base of the penis as well. But that had only been a fairly recent thing. That had happened maybe two or three days before. And… I spoke to the lady, I’d no sooner made my way back to find a seat and they actually called me over. And by this time I just wanted to know, I wasn’t bothered about, undressing, I wasn’t bothered about anything, I just wanted somebody to have a look. The lady asked me to drop me trousers and me underpants. Quickly, or relatively quickly, inspected me. I was there maybe two minutes, no more. And I’m very upset and I’m very emotional and I want to know what’s going on but she didn’t have any definitive answers at all. She said just to try and keep myself calm. And I said I’ll have to try and go to the toilet. And I actually went in there for about 25 minutes, and managed, to maybe half empty, or three quarter empty, which gave me a bit of relief. But the pain was still awful. I went and sat down again, and I was called up. I forget the timescale but I was called up into the, like 7th or 8th floor of the local hospital. And I was sat down in this room, on my own. And assured that somebody would be coming to inspect me, have a look at me. And over the course of the next... five, I was there altogether about nine hours- over the course of the next four hours, I was inspected by five or six people.

 

After being told cancer was found, Mark was left feeling helpless: he had cancer but hadn't been told anything about it.

After being told cancer was found, Mark was left feeling helpless: he had cancer but hadn't been told anything about it.

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So after that initial operation you were told that there were signs of cancer. How did they disclose that? How did the consultant tell you?

It wasn’t the consultant. It was..I’d been in the local hospital about 4 days. And I’d had various visitors. I didn’t want any visitors. I wanted to be left on my own and it was, I seem to remember it was quite early doors. A gentleman had been, had come round to see me to make sure things were alright. I think I’d had a bite of breakfast on that particular morning. And he just came round and said, ‘Is it Mark?’ I said, ‘Yes’ and he pulled the curtain round. Why because there was nobody else in the room; there was only me. And he just said more or less verbatim ‘something I need to tell you. What they took away the other day was ulcerated and cancerous. They’ve not been able to take it all away. And there’s nothing more that we can do for you at this hospital.’ You really don’t want to hear that. You don’t want to hear that. You don’t want to hear the cancer. You don’t want to hear there’s nothing they can do for you. Because I’m just helpless. I’m laid down. I can’t get up, I can’t get about. I’m at the beck and call of everybody’s running around after me. And then I said to him ‘can you just, where does that leave me right now?’ And he said, ‘Well as you… as you lay right now you’ve got cancer’ and walked off. That was it. Very short, very succinct, very straight to the point and off. And I couldn’t berate him. I couldn’t get angry because I suppose it’s his job. You know there’s no easy way of telling anyone this if that’s… You either have it or you haven’t and if you’ve got it then you need to be told. And… it just leaves you… like I said I just didn’t know what to do. I didn’t know what to do. I didn’t know who to phone. I didn’t know why I needed to phone. My family could tell me where they were to the square yard when I phoned them. They could tell you to the square yard. It was the darkest day in this family’s history. We’re very close. And… I was inconsolable in hospital, completely inconsolable. I asked for something just to knock me out. Because I didn’t want to be awake because if I’m awake I’m thinking about it. I just didn’t want to be there. I didn’t want, I didn’t want to die. And as much as people may think otherwise, when people mention the word to you, you’re going to die. You’re going to die and that’s just it. And I was 46 and I had no intention, I didn’t want to be going anywhere. But still in limbo. I had yeah cancer, alright, where was it? He didn’t tell me where it was.

It can be anywhere on your body. He didn’t say where it was. I know that I’d had a procedure…on my penis. But I didn’t know whether it was on there or in my groin or in my lymph glands or anywhere. He didn’t say. He just said that it was… that I’d got cancer and walked away.
 

 

Although most of the staff had been supportive and courteous, before treatment, when Mark felt...

Although most of the staff had been supportive and courteous, before treatment, when Mark felt...

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I was sat down with the girl who I think … no longer works at the hospital. And she was very, very… she wasn’t understanding at all. Really not at all. To a point where I explained to her, I said to her ‘I think you’re being very rude and I think you have no idea about what I’m having to go through. And I’m not prepared to answer any more of your questions’. So I knew where my bed was and I left. And it angered me. It angered me that somebody could be so... the other people that I’d seen all the run up to it were all supportive, were all magnificent. And then I saw a flipside. Because at a point where I needed some solace, at a point where I needed some stability and some strength from somewhere, I had this lady being rude and discourteous. And I reported her. I don’t know whether that had anything to do with her no longer working there, I don’t know. But that was the only unfortunate episode. All the way along you know you’re going to get... you’re going to get bad news, you’re going to get news you don’t want to hear, you’re going to be in operations that you don’t want to particularly be under. But that was the only... the only blip. That was the only thing that I can actually point at somebody that weren’t very good.

 

After finding out about his diagnosis and proposed treatment, Mark wept uncontrollably but a few...

After finding out about his diagnosis and proposed treatment, Mark wept uncontrollably but a few...

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I needed a hand to get on to the bed. Got onto the bed, he had a quick look. His assistant, she had a quick look. And I remember saying to him it seems like it’s healing. And as I said ‘it seems like it’s healing’ I sat down and the gentleman just shook his head and he said, ‘It’s not healing Mark. It will have to be removed’. So from feeling alright to feeling the worst I’ve ever felt in my life was a matter of 5 seconds. And it was just the most devastating news I’ve ever had. I just couldn’t fathom how I was going to manage. How was I going to manage. How the hell am I going to manage? I saw no future. I saw no future for me. I didn’t…I never had... I never had silly thoughts. I call them silly thoughts…both you and me know what I’m talking about. I never had any thoughts like that. And I never felt sorry for myself. I’d just been dealt a real, real bad hand. And… when you get dealt a bad hand you’ve just got to do the best you can with the hand that you’ve got. And I was determined that were what I was going to do. and I remember coming out of there … and excuse the language but I think it’s quite pertinent to what I’m telling you, I came out of there and there were some railings outside the surgery and I leant on the railings and after 5 minutes prior I’d been told that I had penile cancer. That also that the operation that I had to have only 4 out of 10 survive and that the penis will have to be removed. I leant on the railings outside the surgery and wept uncontrollably. My father had gone to pick the car up to come and get me. And I happened to glance to my right and my consultant’s understudy, is a lady, and….just a consummate professional as they all are. And I happened to glance very slightly to my right, she was there and she put her arm round me. And I looked at her and I said ‘I’m going to die aren’t I?’ And in language that you would not expect of a woman in her position she said, ‘No you’re not going to fucking die’ she said. And that gave me so much. Little snippets, little bits that happened, little things that you see, little words that people say to you. And I said, ‘Are you sure?’. And she said, ‘Yeah’, she said, ‘You’ve got, what you’ve got is very serious Mark, let’s not get away from that, it’s serious. But I, and she said ‘more pointedly that gentleman in there will take it as a personal affront if anything happens to you’. She said, ‘He is the best in Europe, never mind the best of his country. He’s the best in Europe. You fight every inch of the way and I will be on one side of you and he will be on the other side. And if you want to get through it we’ll get through it’. And I immediately, immediately I felt stronger, I felt more equipped to deal with it. I knew I had people on my side.

And they’re proper people as well. You know friends can help you. But these are the people that you want batting for you. These are the people that you want on your side. And I immediately felt better. I immediately felt like yeah I think yeah I’m going to be alright. I’m going to be alright because she’s told me I’m going to be alright. She knows I’ve got a long old road but I’m going to be alright. And it was. It’s just little bits, little things that people say to you, you have to sort of cling on to. You need a little bit of hope. You need, you need to grab onto every little piece. And that was the first one. And there were a few more after that. But that was... that was err that was a turning point. Everything happened in one day within the space of about 5 minutes. Being told all the bad news, feeling awful…crying uncontrollably and then being told by somebody that

 

Mark was confused about his diagnosis. He knew he had cancer but didn’t know where it was until...

Mark was confused about his diagnosis. He knew he had cancer but didn’t know where it was until...

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I had yeah cancer, alright, where was it? He didn’t tell me where it was. It can be, it can be anywhere on your body. He didn’t say where it was. I know that I’d had a procedure…on my penis. But I didn’t know whether it was on there or in my groin or in my lymph glands or anywhere. He didn’t say. He just said that…that it was... that I’d got cancer and walked away.

Which… sort of further complicated it because you can’t get any information. You can’t…you can’t read up, which I tried to, because I don’t know what I’m looking at. I did find a couple of books where I was, where it gave you peoples’ experiences of being afflicted with cancer. But I wanted to know what mine was and I didn’t know. And like I said, I didn’t know up until seeing the gentleman at the other hospital. And he, because I’d asked him to, he spelt in out in no uncertain terms that I had penile cancer. And he did mention how rare it was. I can’t remember…I can’t remember how many people that get cancer get penile cancer. It’s a tiny, tiny amount. But by then I think you find out, you do, I think you find out lots about yourself as well. I was just, and anybody who knows me will tell you… I’m just... stubborn and I’m strong and I’m not feeble in any way- feeble minded. I’m not, not at all. And I decided to meet. There’s nothing I can do. I can maintain a positive attitude and try and keep myself well.
 

 

Mark didn't tell his family about his symptoms but he was open with female colleagues at work: one was cross about his inaction and told him to see a doctor.

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Mark didn't tell his family about his symptoms but he was open with female colleagues at work: one was cross about his inaction and told him to see a doctor.

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Before seeking help did you discuss your symptoms with anybody else?

Certainly not family. I, bizarrely enough, the girls at work, were like my extended family. They knew I had, they knew I had a problem. Me family were completely oblivious to the fact that I had a problem. They’d noticed that I’d started…my routine had changed. We all have routines and mine had changed. We discuss it now. I was spending.. longer in the bathroom than I used. I was getting up 7 or 8 times during in the night, to go to the bathroom. and, that and a number of other things. My routine had changed, so they suspected that something was amiss. My colleagues at work... I told them that I had a problem downstairs, that I was struggling to pass, I didn’t tell them, I spared them the gory details, but I did mention that I’d been struggling, to pass water, I don’t And I used to, not make light of it, but I used to say well I don’t know what’s happened, I don’t know how this has started. But I was...I wasn’t, I wasn’t secretive. I was secretive with my immediate family but I wasn’t secretive with the girls at work. They knew there was a problem. They didn’t know what the problem was. One girl in particular who I’m very fond of, she… became very cross in saying that I really do need to go and seek some help. And I actually some time before that plucked up the courage to phone, my GP and he was on holiday. And that was because of her. And I look back now and if that, and that was, I went in on the 8th October, this was maybe the start of September. So if I’d have, if the doctor had been in. It’s just a lot of circumstances that didn’t actually gel together correctly for me. But I’d have, if I’d have, if the GP had been in then maybe things would have been different. But I didn’t discuss it with my family. I didn’t feel like I could, it’s a strange thing, I couldn’t…. People discuss, families discuss all sorts of things I know. But that wasn’t something. That’s not a subject you can broach with...well I don’t think you can sort of broach it with anybody, apart from your GP or somebody very close to you. And my friend was very close to me and she waved a finger at me once or twice to go and seek some help. And I did try, but then I didn’t until the problems on the 8th. But things may have been different if the doctor had been in but I don’t know.
 

 

Mark received support from friends, family and the hospital chaplain and other support workers;...

Mark received support from friends, family and the hospital chaplain and other support workers;...

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It’s difficult to conduct yourself the same as you were because you’re not the same. But… you know people don’t need to know. People don’t need to know what’s the matter with you. Without friends and family, it would have been very difficult, very difficult. So I owe them more than I could ever repay them. But apart from that, things are going alright now, seemingly fit and well and looking forward to starting my reconstruction and getting myself back to something like I was.

With regard to relationships, no. I have a relationship with my brother and my sister and we are very, very close. They used to, they’d come over as often as they could but they have … things that they need to deal with as well. And…apart from that… it was, it’s funny really because you tend to forget about everything else. I am the most important thing. The world goes on, the world goes on but I just focussed on me. That was, and it’s very selfish I know, but… that was, I was the most important thing, at that particular point. And I weren’t bothered about work, I wasn’t bothered about money, I wasn’t bothered about anything. My health, I was the most important thing. If I got out of it and I could get myself back up and running again then them other things can be dealt with. But if I didn’t then they can’t be so there so there’s no, in my opinion there’s no point worrying about it. But they had, which I was surprised at, they had… some help at the hospital as well, they had people coming round if you were… But…but I’m not a God-fearing man, I’m not, although I would never take his name in vain or anything like that. But there were times when I was quite low and they used to have the padre come round and…. and I remember speaking to him. He actually came to see me on the day before my lymph glands, I had my lymph glands done. And I wasn’t…. at all scared about the operation. Not... not, people don’t believe me but I wasn’t scared. But it was nice for him to come and just say a few words. I know, it’s nice. And I always, I always maintain, I never blank off, I never close my mind to anything and it did me a bit of a good, to be honest. There was a network of people that come round and chat and just…it was, it was a real eye-opener. It really was and the most, the most magnificent people I’ve ever met in my life.
 

 

Mark’s father drove him to the hospital and helped him get in and out of the car.

Mark’s father drove him to the hospital and helped him get in and out of the car.

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At that point when I went to see the gentleman at the other hospital, I still couldn’t get about so I had to... father drove and I had to put the back seats down and put a quilt in there and lay down in the car. So I needed... I needed a hand. I needed a hand to get in the car. I needed a hand to get out the car. And I... obviously with it being the first time that I’d been over to the other place I didn’t know where it was. Father did.

 

Having at first been told that reconstruction of a new penis would not be possible, after his...

Having at first been told that reconstruction of a new penis would not be possible, after his...

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How would you say you view the future now? You mentioned before about the reconstruction. Are you optimistic?

I’ve always, I’ve always tried to be. There were occasions where… and this would have been a bit up and down as well. When I was in hospital …one of my surgeon’s understudies came to see me and I were having a particularly bad time. It was to do with the lymph glands …they had to drain it and we had to administer some drugs or something, I can’t remember. And I broached the subject of reconstruction with him and that I would… I would like at some juncture to be able to go ahead with it. And he was very sure in what he said. And he said, ‘Well I was present for the operation Mark, for your penectomy, and there’s no chance that you’ll ever have any reconstruction’. And I was so deflated, you know on top of everything else, and I said, ‘Well why is that?’ He said, ‘Well they because had to’ When I first came out I felt so hollow. You know like when you get a tooth out and you’re forever sticking your tongue and you feel there’s something missing. I felt hollow like they’d taken loads away. And I explained this to him. He said, ‘They had to Mark’. And he said, ‘It’s just like having a light switch on the wall. If there’s no wires at the back of the light switch, you can flick it on and off all you want, the light’s not going to come on’. He said, ‘all your workings…’ So I got on a real downer about that and I just put it to the back of my mind. I never considered it. I never broached the subject again.

Up until I was seeing my counsellor and I mentioned to my counsellor that I wouldn’t mind some reconstruction but it’s not possible. And she sort of took it on board. And she found out, unbeknown to me and between that meeting and the next meeting, she’d been in touch with the relevant people- the surgeon and the his entourage. ‘Well of course it is. Of course it can be done’. Flippantly, ‘of course it can be done’. So she couldn’t wait to tell me the good news and I went back. So I was, I was delighted. And I remain optimistic.  I’ve made some enquiries. The last time I saw the gentleman at the hospital he’s going to make me an appointment to have another scan very soon. He’s going to make me an appointment to see the plastic surgeon as well. It’s fraught with problems. It’s absolutely fraught with problems. But I have seen the finished article and it is just truly remarkable. It’s just remarkable.  so I’m going to I’m going to go ahead and with Lady Luck perched on my shoulder, which I haven’t had for a couple of years, I’m hoping that… they tell me it’s all dependent on how  successful the first operation is. Whether there is any touch sensation to the new phallus. If there’s no touch sensation, it doesn’t happen overnight, it takes a while because they have to reconnect the nerves and what have you. But if there’s touch sensation then they can go on and complete it. If there’s no touch sensation I’m left with an enormous scar on my forearm and nothing to show for it. That’s the worst case scenario. But in answer to your question I remain optimistic, yes.
 

 

Mark hadn’t expected to have any more surgery but his consultant wanted to remove some lymph...

Mark hadn’t expected to have any more surgery but his consultant wanted to remove some lymph...

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I came home. I’d had a scan in between me penectomy and leaving the hospital. I came home and about… maybe 6 weeks later, I was contacted again by the same gentleman. And I went over and he examined me and asked me how things were going on. Now obviously at this time, at this point I was sitting down to wee. no I do beg your pardon, I wasn’t, I’m getting confused, I’m getting confused. I’ll bypass that, I wasn’t sitting down to wee, because I still had my bag on, I do apologise. But the scan had come back clear but he wanted to remove some lymph glands, more of a preventative thing rather than the lymph glands being infected. I didn’t want to, it something, it was a bit of a curve ball, I hadn’t expected to have any more surgery.

So after you had your penectomy you had your lymph glands operated on. How long was it between the two?

It was about… I had my penectomy in the December, I believe. I may be wrong. I think it was in the December. And then my… lymph gland operation at the start of March the following year, so it’s March ’10. Not long after, it wasn’t long after I know. And I think that’s one of the reasons why it took me so long to get over it, you know. I’d not long been through an awful operation. Making progress, thinking you’re making progress, and I was making progress. But to be fair I was… I was given the option. It wasn’t a life or death operation. It wasn’t life-threatening. But what they’d said was… and I was given the option and I was given time to think about it as well. And they’d said… they’d done a scan and they’d not… there was no sign of any infection in my lymph glands. Although you can actually be microscopically infected and it not show on the scan they told me… But what the gentleman wanted to do was to remove- I think he removed twenty, I can’t remember- twenty lymph glands that were the most adjacent to my cancer. and he said, ‘It’s preventative. We just… we want to be one step in front of it. We want, don’t want it to rear up again. We’ve taken it out. Your lymph glands are clear. But there’s always a slight chance so if you give me the permission I want to do this operation, get them out, we’ll do a histology, we’ll do some histology on them when we get them out. And for me it were a no-brainer. It was an absolute no-brainer. I’d had the big one, which was traumatising enough in itself. I said, ‘Yes we’ll go ahead and we’ll get that done’. Went in again, had that done and then I had some problems after that. But then when it came back that the histology was clear on the lymph glands, again that’s fantastic news. You know they were the ones, it was explained to me that they were the ones that were most adjacent to me cancer so if there was going to get infected, if there’s going to be any infection it would be there. And they were all clear so again another step forward and they decided to go ahead and it was a success.
 

 

Mark feels 'emasculated'' he struggles to wear jeans or shorts because he is worried that people...

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I don’t feel a proper man. I feel… completely emasculated and it’s difficult to explain but I still have, a problem wearing jeans. I still have a problem wearing shorts. Because I think that people know. And it’s silly I know, but I think that people will look and realise that I haven’t got a penis. That’s what I, I that’s what I think. And I’m probably wide off the mark but that’s my overriding feeling. Even now all this time afterwards, is that I don’t feel like a proper guy. I can’t do the things that proper men do. I can’t go and stand up and wee. I can’t… I can’t go swimming. Silly little things like that. And particularly, getting in the shower and sitting down for a wee. They bring it, they bring it home as well. I tend not to look... I never, I don’t look, I don’t have a look. I do whatever I need to do, and then I just go. I don’t, I don’t look because it’s not something I want to look at. Hopefully very soon I shall be going and getting some reconstruction done. That’s going to be sooner rather than later. I understand it’s 3 or 4, maybe 5, operations but I’m prepared to go through with it, if that would mean a little bit of closure for me. But ‘emasculated’ would, would sum it up quite well.

 

Mark says the psychological part of having penile cancer was the overriding problem for him.

Mark says the psychological part of having penile cancer was the overriding problem for him.

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I’m a single man anyway. I’m a single man anyway. So… not being able to have sex is... doesn’t register. That’s just not important at all. I have two children from me marriage that that failed and they’re grown up now. So you could say that that part of my life wasn’t important anyway. But and I’m smiling when I say this... you know it’s very difficult to have sex without one. You know it’s not something you can do. But at that point that’s not a consideration. I need to get myself right and get myself fit and well. They… the problems with me have been more…psychological rather than physical. It’s… maybe that, maybe I’m wrong maybe... I mean it’s 50'50. It’s 50'50 the psychological side of it and... the physical side of it. Physically I heal very quickly. I healed very quickly.  But the psychological part of it became the overriding problem for me.

They didn’t explain … obviously it’s going to impact on your life. It’s going to make... it’s going make a huge impact on your life because it’s going to colour just about every single facet of your life. You know you...I no longer can... The list is endless, the list is endless. It affects all sorts of things in your life. So I knew that when them things arrived I’m going to have address them, I’m going to have to deal with them, individually. And you very soon get used to sitting down to wee.  You very soon get used to... to nothing being there. You just... you do. We’re remarkably malleable as human beings, we are. And we’re resilient.
 

 

Mark wouldn’t be in the position he is now without the help of a local counsellor, although the...

Mark wouldn’t be in the position he is now without the help of a local counsellor, although the...

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You mentioned there about needing emotional and mental support. Were you offered any by the hospital?

They made me an appointment… to… Actually sorry no, I’m mistaken. My GP, at my local surgery made me an appointment to see a lady, a counsellor.  I’d been to see my GP to get the latest of my sick notes. And I was... I were fragile. Emotionally, I was terribly fragile. And he thought that it would do me some good. And I’m one of these people that I’m prepared to do anything if it helps me so… I went to see this lady and it didn’t… all I did was talk. She didn’t ask me any questions.  I was there 45 minutes, cut off quite abruptly when the 45 minutes was up. Nothing felt right about it at all. Nothing at all. I… didn’t make another appointment to see her. I then went back to see another GP because I had… I was in some discomfort. And I’d said that I’m seen this lady at the... the local health centre, this counsellor. And he said, ‘No I know somebody much better than that Mark’. So he made me an appointment to see this lady in [Name of place].  And I’ve been now… this lady is as good as the other one wasn’t. She’s just been magnificent. And I’ve been to see her maybe on 13, maybe 12 or 13, occasions now. And she’s had to do a lot of work out of hours because she’s never come across anybody with my problem. And she obviously doesn’t know, because she hasn’t come across anybody like me, she doesn’t know the progress that I will make or the timescale within that progress. She doesn’t know what feelings I should get back. She doesn’t, she didn’t know anything the disease or anything about the problem at all. Now her having done a lot of work behind the scenes and me opening up to her has made me feel oh markedly better. It didn’t happen overnight. It didn’t happen straight away. I had the first time I went to her, I had a box of Kleenex and I nearly did the box of Kleenex out. But the next time I wasn’t as bad and I wasn’t as bad. She gave me some homework to do really, it was just like being at school, she gave me… she needed… do a mind… strengthening if you will. There were, there were situations that… situations, that I would ordinarily have been able to get through and get round and get over, were proving to be difficult for me. And she gave me a way to try and sort that out and I worked at that. And I used to take great pleasure in going racing or going walking or going golfing. And I’ve done none of them. I’ve done none of them since. And… I think it’s… I’m physically well enough now but she gave me some little tasks to do again just to try and make me feel good about me. Not to feel... don’t let situations get the better of you- I’m simplifying it somewhat-but don’t let them get the better of you. Try to take every day and improve a little bit every day and she’s been an absolute, absolute diamond. And I absolutely wouldn’t be in the position I am today if I hadn’t have been seeing that lady in [Name of place].
 

 

After surgery that involved creating a slit down his foreskin (a dorsal slit), Mark was very...

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After surgery that involved creating a slit down his foreskin (a dorsal slit), Mark was very...

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And I knew… I didn’t want to, I didn’t want to have a look at what they’d done. I didn’t want to put my hand down there. I just didn’t. I knew that something had gone on but I didn’t know what it was… the second day, 2 days after the operation, I wanted to go… I had a bag on, I had my bag on for my urine and everything else. But, and I had two drains on. But I wanted to tidy myself up. So the girls, couple of them, got underneath my arms and I’m a big fella, I take a bit of carrying. But they took me to the lavatory. And I took my underpants down and when I saw what they’d done, I collapsed.

I wouldn’t mind admitting, and if there wasn’t a button on the floor. There was a button towards the bottom. And I pressed it. And very undignified, I was there, with my drains and my bag, and my privates in a terrible state. And just... the most upset that I’d ever been in my life. Because nobody at that point had told me anything. Nobody had told me anything. They’d done what they call a dorsal slit, from the top of the penis to the end. And for all intents and purposes opened it up as you would a pork sausage. Top to bottom and opened it up. And I had a bag on. And I just didn’t see any way forward. I remember that was the lowest I’ve ever been in my life.

But I can only describe just being.. I just.. I’d never been as horrified in my life. I’d never seen anything as bad….on anything, as I, as the sight that I saw when I when I saw my penis for the first time after that.

I can’t describe how it felt, I can’t. I can see it in my mind’s eye now and I just… it was just horrific. And I know that it had to be done and I know that...that that’s clearly because that was…that’s I presumed that was a dorsal slit. He’s told me I was going to have one so I presumed that this is what it is. But I just remember thinking ‘Jesus, there’s got to be an easier way of doing it than that’. You know did I have to have this happen to me? Did this really have to be done? And I just...I did honestly feel like a piece of meat. I felt like I’d been given scant respect. But you’re going to get ideas like that in your mind at that time because you’re confused. And I didn’t think that people were helping me particularly. It was the first time I’d been in hospital. Which is itself is a big thing as well, it tied in with that as well. But it was... it was horrific. Absolutely horrific. I understood it had to be done and I’ve never collapsed in my life. Never ever. I’ve never fainted, never collapsed. But I did. Just I’d never... I... just the shock of it, I’d never seen anything like it. It was awful.
 

 

Mark felt that his boss was on his side but his company didn’t offer sick pay. Statutory sick pay...

Mark felt that his boss was on his side but his company didn’t offer sick pay. Statutory sick pay...

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Well work had been very good. I’d spoken to my area manager and didn’t tell him the full details but said that I’m going to need a succession of operation, I’m going to be off work a long time. And he’d given me the green light to go ahead and get that done. So that wasn’t a concern. But even if he hadn’t have done then I would have still gone ahead- it would have had to be done. But it was just nice to have somebody on your side and helping you. So work was... work was dealt with. The company that I worked for when I went into hospital was different to the company that I worked for when I came out, because the company was bought out. Which was a bit of a concern because I didn’t know any of the new people in high places at the new company and this and that. But that all sorted itself out.

Money-wise was a huge problem. The company I work for I don’t get any sick pay. So I was on SSP [Statutory Sick Pay], which is £60 a week I think, which doesn’t pay for anything. It doesn’t pay my outgoings. It doesn’t do… So I was in a bit of a, I was in a bit of a mess financially but I made one or two phone calls and I think if you’re straight with people. And they… you know there are some people that are understanding to your problems. I borrowed a bit, borrowed some off my family. And but again that was, it was always, it was stressed to me… at nearly every point that I needed to be free of worry. Don’t have any worry, don’t have any anxiety.
 

 

Mark’s legs are still weak, but he has been making slow progress.

Mark’s legs are still weak, but he has been making slow progress.

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I mean I’m now nearly two years, nearly two years, I like to say post-tumour, it’s like two years since I was diagnosed. I still have to work on my bottom half. My top half is strong, my bottom half, because of my inactivity, is still weak. There was a point where a, the very thought of getting on a push bike wouldn’t have appealed to me. But it does heal, you do get better, you do start to feel alright. I can get about, no I still get tired, I still get profoundly tired. And it doesn’t matter what time of day, it doesn’t matter where I am and they still insist that that is to do with part of the, part of the operation. But how I felt, how I felt in myself… physically I made progress, albeit slow, and me progress was altered when I had, me lymph gland operation and I had to get myself together again and I made progress again.

 

Mark spent a month in isolation because the hospital staff didn’t know what the infection was and...

Mark spent a month in isolation because the hospital staff didn’t know what the infection was and...

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I had the lymph glands out and I had more trouble with that operation than I had the big operation, the penectomy. The infections, the pain, the discomfort, and the infections that you get after the lymph gland operation seemingly fall within some certain parameters but I was unlucky enough to be way off the scale. I was rushed back twice into the hospital. Spent a month in isolation because they didn’t know what the infections were, and they weren’t prepared for me to be on the ward and somebody else get what it was. They tried different antibiotics. Nothing seemed to work. They just wanted to get me out the way to be honest, I’m saying that in inverted commas, but they just didn’t want, they wanted me in a private room. And I came, [cough] excuse me, I came home and that was still the case. I had awful problems again, I was rushed back into hospital again with the same problems. And you never seem to get past it, you never seem to get through it. It’s like running up a sandbank. I’m making progress, then I’m not making progress then I’m making progress, then I’m not making progress. It were very frustrating.

 

Despite having had a total penectomy, Mark still feels like he can get an erection. Although that...

Despite having had a total penectomy, Mark still feels like he can get an erection. Although that...

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I found that I feel like I can still get an erection. The muscles or whatever it is at the back, I still feel like I can... I can get a erection. Obviously I can’t because I haven’t got a penis but… sometime after the operation I actually… I had to phone my surgeon’s understudy and explain as best I could what had happened the previous night. So I was watching something on TV which were a little bit close to the knuckle and I ejaculated. And I thought I’ve done myself irreparable damage here because I don’t know the mechanics of what they’ve had to do to be able to enable me to wee sat down, I don’t understand. And… for all intents and purposes it was exactly the same as any man’s ejaculation. The same feelings, the same build up. I phoned and I said, ‘Is this normal?’. She said, ‘That is fantastic news, absolutely fantastic news. Because that means’ she said ’we were going to leave it with you but we were rather hoping that you were going to make progress and this was going to happen to you. This is just another stage that you were going to encounter’. And she said, ‘You will be able to, Mark’ and she tried to explain what they’d done and I didn’t really understand what they’d done. But she said you will still be able to. It’s not the same, it’s not... it’s a liquid, it’s not the sperm that I would before the operation have ejaculated, it’s not like that. But it’s an ejaculation none the less and that is…that’s a good sign. That’s a good sign. And it does make you feel better. It does make you feel better. It sounds really silly but that’s another step forward towards being… because… I still like women.

Women are lovely. I love, I love women. But right now I can’t... I don’t feel... I don’t feel a full man. There’s no… I can’t get romantically involved. I can’t. But it was nice to feel... have that feeling because I don’t mind telling you that it brought a lot of good memories back for me and it made me feel good. It made me feel good in as much that that was another... another step forward. Albeit small one, it was another step forward. And that’s all that I want to continue making. Little steps, not going to go backwards. Just little ones forward all the time.
 

 

As a single man with two grown up children Mark says that not being able to have sex isn’t an issue.

As a single man with two grown up children Mark says that not being able to have sex isn’t an issue.

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I’m a single man anyway. I’m a single man anyway. So... not being able to have sex is... doesn’t register. That’s just not important at all. I have two children from me marriage that that failed and they’re grown up now. So you could say that that part of my life wasn’t important anyway. But and I’m smiling when I say this... you know it’s very difficult to have sex without one. You know it’s not something you can do. But at that point that’s not a consideration. I need to get myself right and get myself fit and well. They… the problems with me have been more… psychological rather than physical. It’s… maybe that, maybe I’m wrong maybe... I mean it’s 50'50. It’s 50'50 the psychological side of it and the physical side of it. Physically I heal very quickly. I healed very quickly. But the psychological part of it became the overriding problem for me.

 

A week after his drains were removed Mark’s groin swelled on one side and became infected,...

A week after his drains were removed Mark’s groin swelled on one side and became infected,...

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I got to a point where they decided... they took the drains out because they’d done the job, and I was alright to go home. So I was delighted as you can imagine. I came home and was immobile again. I don’t remember being in any great discomfort at this point, because both sides I didn’t have any swellings or anything. But then I noticed -I’d been home about a week- that the right hand, my right hand groin had started to swell up and swell up hugely. And it was really sore, really, really sore. I phoned, because I’d been given a helpline number, and they’d said ‘it does happen it’s just your lymphatic fluid has nowhere to go. Ordinarily you would…your lymph nodes would deal with it, pass it into your urine and urine it out. But it’s got nowhere to go so it’s just congregated. But nip over in a day’s time and we will… we’ll drain it for you. So I drove, I went over there, got some help again. And they lanced it and they drained it all out and there was just over a litre.

So you can imagine what a litre would look like underneath you. It just stopped me walking, I couldn’t walk. Came home and it did it again. I went over there and got it done again, maybe two, three days later. It got to a point where I was going three days a week and I, it got me down. And I said this has got to stop, when is this going to stop? Eventually it will find somewhere to go. Eventually it will stop. I was starting to feel very ill. I was starting to feel… awfully, awfully poorly. And it was everything was hot. I was hot. My leg was hot, my groins was hot…discoloured. But I’d been told that it’s all normal, it’s all how it should be. And I went over one Sunday because I simply couldn’t stand it anymore, I couldn’t stand the pain anymore. They’d been drained, it had been drained on the Friday and I drove over on the Sunday and I had to wait six hours I think to get it done. Couldn’t sit, couldn’t stand, couldn’t do anything. I’d taken my painkillers with me but I’d run out. They got me some more. They drained it, I thanked them because I get instant relief but I still didn’t feel well, I didn’t feel very well at all. Got in my car, by the time I’d driven back home it was full again. And it just starts to get you down. It starts to get you down. I’m in pain, I’ve been through all this nonsense. So I went through to the other surgery at the other hospital, and my specialist said, ‘No it’s no good this Mark, we’re going to readmit you’. On… within in a second of seeing it was just horrible, it was just horrible. He said, ‘There’s something not quite right, we’ll have to get you in’. So I drove home and I went back in. And by the time I got to hospital- it’s strange how it coincided- I was so ill. They… what they would, what they’d been normally draining had changed its state into a gel. So they couldn’t drain it, they couldn’t drain it. So they started to cut it and try and get it out that way. And it was just an unmitigating nightmare, just a nightmare. And I was in isolation, nobody not telling me why I was in there. I understood it because of the infection but they’d tried various antibiotics to try and sort me and none of them had been successful.

And after a month I went home, and the permanent drain had done its job. But I was sore and I still couldn’t get about and I came home and I had a fortnight at home and the whole thing just repeated itself. It was my left hand side one this time, and the same…it was just dittoed of everything I’ve just said… everything.
 

 

Mark says you should follow your specialist’s advice, accept whatever help is offered, maintain a...

Mark says you should follow your specialist’s advice, accept whatever help is offered, maintain a...

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I don’t know what stages they’re at, they’re either pre-op or post-op or whatever. But all the feelings and the misgivings and the and the fears that they have right now, are ones that I’ve already had. And we feel the same way we look upon life, we’re all the same, we’re all the same. We’ve all have the same apprehensions. We all have the same goals. And we just want to be right. And there will be occasions where, many occasions where, I know there was with me, where you just wondered whether there’s ever going to be a point where… they can… question whether they’re gonna pull through. You start questioning your own mortality. But… not to do that. You can. You just need to…you need to do as you’re told. You need to do what they ask you to do. You need to maintain a positive outlook and you can beat it. I’ve… it’s two years more or less to the day that I admitted myself into hospital, local hospital. And the progress, I’ve had three major operations in two years, and all the associated problems. And I’ve… I’m through it. I’m through it. I’m back up and about I’m at work. I’m proof, if proof were necessary, that you can you can get through it. You just need to be…you need to be very strong. You need to be… determined enough in your own mind... just don’t let it, just refuse. Push yourself, refuse to let it beat you. And you can. There were many occasions where I never thought about giving up, I never thought about not having a procedure done or not having a tablet or not having an injection. But it gets awfully tiresome. Month after month after month after month after month. It gets to a point where you think… that you start questioning whether what you’re doing is the right thing… It is. Just keep doing it. And take on board whatever help they give you. Don’t think you’re any less of a man for seeking some… some help from a counsellor. Don’t think you’re any less. Because that’s what they’re there for. They’re professional people. And it helped me immeasurably. And I wouldn’t be where I am right now if it wasn’t for that lady in [Name of town]. She’s performed miracles on me.

 

Mark was told his diagnosis at the specialist centre but would have preferred to know his doctor...

Mark was told his diagnosis at the specialist centre but would have preferred to know his doctor...

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Do you have any advice for health professionals who are treating men who’ve been diagnosed with penile cancer?

I don’t think I’m in a position to give them any advice. My only my only criticism from my experiences was that I, like I said earlier, I suspected that they knew that I had penile cancer before they actually told me. Again, whether that would have altered anything I don’t know. I don’t know. They maybe did it for the best of intentions. But the fact remains that it was me. And I wanted to know. I wanted to know what it was. And I suspect that they knew for a while before I went to the other hospital to have it pronounced on me that this was happening. I’m not suggesting that it would have been…. apt to get it in a letter or anything like that. But I think if there was any advice that I could give the General Practitioner or whoever, if you know in your own mind that it’s penile cancer, tell them. Tell them as soon as you possibly can. It’s not something that they, I don’t think it would… it wouldn’t have worsened my situation. It wouldn’t have made my… it wouldn’t have made my situation any worse or any better. I don’t know. I doubt it. But at least I would have known a little bit earlier. And my trip over to the other hospital… I would have known that I had penile cancer. And I would probably have known that it was going to be removed. You’re never going to get away from the shock that you’re going to give to somebody when you’re given that news. That’s not possible. But I think it does help, the sooner you tell them, the better. And I like I say I think they probably knew a while before they told me. But I have nothing but admiration for anybody who’s been… who’s treat me. The General Practitioners, my surgeons, my… every single one of them. So I’m saying it a little bit tongue in cheek. I don’t think I’m in a position to give anybody of that standing any advice. But if there was then just to let them know sooner rather than later.
 

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