Jordan - Interview 27
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In early 2010 Jordan noticed a swelling on the end of his penis. Twenty eight years earlier he had noticed a small patch in the same place but had been told by his GP that it was nothing untoward, and then three years ago his foreskin had become very tight and sore. He had been feeling uncharacteristically lethargic lately but had attributed this to his age (fifty eight). His wife noticed blood on his underpants and saw the lump. Being very worried she encouraged him to see his GP, but he was frightened of what might happen so delayed for three months.
Jordan finally saw his GP in January 2011 when thrush was diagnosed and topical treatment prescribed. When the swelling failed to respond to treatment he was referred to his local hospital. Within a week he was seen and a biopsy was carried out under general anaesthetic. Immediately after, he went on holiday to Spain with his daughter, returning to find a hospital appointment waiting for him. It was at this appointment he was told he had penile cancer.
The news left him devastated. He had never been seriously ill before and had never been in hospital. He thought it would only be a matter of time before he died and before that he would have to face problems with urinary and sexual function. He feared the cancer would spread. He found it difficult to talk about, but when he did, people were very sympathetic. He was referred on to a Specialist Penile Cancer Centre.
In the meantime he and his wife carried out as much independent research as they could. They trawled the Internet for help and advice and Jordan saw an alternative therapist. He changed his diet and asked his surgeon if phototherapy would cure him. The surgeon thought not. The only option was surgery which Jordan delayed for as long as he could as he felt he needed a lot more information.
The consultant at the specialist centre explained in great detail about the options for surgery, from the very best to the very worst case scenario. At his point he fainted.
Jordan’s wife, daughter and alternative therapist managed to convince him that surgery gave him his best chance of survival and he finally agreed. He could have had his operation in April 2011, but because he delayed, it was September before the operation took place.
On the morning of the operation, he had to ring the hospital to make sure there was a bed for him. He was secretly hoping there wouldn’t be and he could delay once again – but there was one! Jordan underwent a partial penectomy with reconstructive surgery after which he experienced discomfort rather than pain – and his penis looked much better than he had expected.
He feels he is getting better every day. He finds it awkward to urinate and has to sit rather than stand and his sexual function is impaired. However, he is confident that both of these will improve. He now walks his dogs about two miles every day and feels good about himself. Initially, he saw the operation as a threat to his masculinity but his wife has helped him through that. The scans he has had so far have detected no spread of the cancer and he has the first of his six monthly check-ups coming up.
Jordan had a discoloured patch on his penis for 28 years, which he had earlier checked out at his wife's request. Recent growth of this patch and bleeding from it made him seek medical help.
Jordan had a discoloured patch on his penis for 28 years, which he had earlier checked out at his wife's request. Recent growth of this patch and bleeding from it made him seek medical help.
Going back... before my first daughter was born... there was a patch on the end of my penis, ah, just sort of discoloured. It was white, sort of, well… not as pink as the rest of it, whitish, about the size of a 5p piece.
Well the patch on the penis had been there, I’d say, 28 years, but it had never changed at all, so I didn’t bother about. I didn’t think anything of it. I did having said that, I did see the doctor because my wife said until I got it looked at, as she was carrying my daughter, before she was born. She said, ‘Get it looked at, otherwise I don’t want to make love. So [laugh] obviously that got me round to the doctor’s. The doctor looked at me and he said he didn’t see any problem with it. It was just a bit of discolouration and… it never went any further. And obviously for the, the last 27 years it’s not gone any further. So, it was when the lump started to grow, and... the bleeding and that sort of thing, that I actually... made the decision to do something about it.
Jordan delayed seeking help because he was worried about what was going to happen.
Jordan delayed seeking help because he was worried about what was going to happen.
You talked about delaying seeking help, what do you think were the main reasons why you delayed?
Well the worry of what I … how it would end up. The usual sort of thing, you bury your head in the sand and hope it goes away and… I suppose because I’ve already had such good health over the years, and I’ve got over, you know…, some pretty difficult times health-wise, and I’ve always fought them off, and I thought, ‘Well, am I going to do it with this?’ but as time went on, I realised it was not going to happen. So the decision was virtually made for me.
Jordon went in to have his biopsy at 7am as a day case; the operation was performed under a general anaesthetic. After the operation there was discomfort, but no pain.
Jordon went in to have his biopsy at 7am as a day case; the operation was performed under a general anaesthetic. After the operation there was discomfort, but no pain.
Could you just talk me through the process of having the biopsy?
Right, it was a day as an outpatient. Went in there at 7 o’clock in the morning. Ah, nothing to eat the night before. Pre-med, went in, it was a general anaesthetic obviously. And so it was, it was a proper operation. When I woke up I had a catheter in the end of my penis which was very uncomfortable. But I was out of hospital by the end of the day, at 8 o’clock at night. And… there was just a little stitch in there, so it was not a problem. And once the catheter came out, I could sort of urinate ok, so it didn’t seem like a problem at all. They took a tiny little bit of the lump and a bit off next to it from the good skin as well, so that they could compare it. Then… went on holiday with a daughter in Spain for a couple of weeks. And then, had the appointment to go back and then, they sort of dropped the bombshell so.
Was there any pain associated with the biopsy?
No, no it was really good, really very, very good indeed. They gave me painkillers obviously, but just a bit of general discomfort but certainly not pain. It was more of a worry because as I say I’d not been in hospital before and the big worry of course are they going to find anything that’s much worse than it looks. So, voilà anything can be worse than cancer of the penis, worse than it looks, I don’t know, so that’s a bit of a contradictory in terms.
Jordan's wife was with him when he received the results of his biopsy; he found it difficult to deal with the uncertainty of what would happen and his mind was in turmoil.
Jordan's wife was with him when he received the results of his biopsy; he found it difficult to deal with the uncertainty of what would happen and his mind was in turmoil.
And can you remember how the consultant revealed the results to you?
Yep, well I was with my wife again, and she supported me all the way through. I was waiting in the waiting room with various other people, because it was just a general surgery in the hospital. And he called me into a little room, and he and a female nurse, with a… and then he told me all the, the results of the biopsy, and of course I was a bit stunned. Then he said, ‘I hope you don’t mind the female nurse being here, because she is a proper cancer specialist.’ And she gave me her phone number and said, ‘If you want to talk about this feel free to do so any time.’ And she’d actually been through cancer herself. She was actually bald, which was rather interesting. So obviously she had fellow feeling and maybe that’s why they used someone like that. So… I didn’t need to phone, but at least it was nice to know that the support was there.
How you did feel when you received that diagnosis?
Well, devastated. As I say, I’d never really been seriously ill before, so it was quite a bombshell, and I suppose it’s the not knowing the end result, which is that because it then was a case of ‘we’ll refer you to the specialist… in... the bigger hospital, which deals with, you know plastic surgery and cancer and urology and all that sort of thing.’ So they were the specialists for the area and it was a case of waiting for that. So obviously, my mind was in turmoil, ‘Will I, will I live? Will I be able to have a sex life? Will I be able to go to the toilet ok?’ All these sort to things. Will it spread? Etc. So that was the situation.
Jordan's wife first suspected there may be something wrong when she saw blood on his underpants: together, they told his family that he needed treatment for a skin cancer.
Jordan's wife first suspected there may be something wrong when she saw blood on his underpants: together, they told his family that he needed treatment for a skin cancer.
When did you first tell someone about the problem?
Its, well my wife saw it and I think I was, there was a bit of blood on my underpants and things like that and she wanted to know about that. So that told her, or she found out... that’s the first situation and then obviously went to the doctors and it all went on from there. Once I knew I’d got the cancer, well we, we told members of the family and not exactly where it was, but that I had, skin cancer and that needed treatment. And that’s been one of the difficulties of course, talking to friends and family and [laughs]. You know, people you know for many years and you want to tell them that you’ve got an illness and its, its needing treatment and you sort of say, ‘it’s a man’s problem,’ rather than the exact… you know details and the location. So that was one of the difficulties. And there’s a lot of my friends who have said, you know, ‘You’re a very private person. You don’t sort of wear your heart on your sleeve.’ So it’s I mean still only a few people know, exactly where it was.
Jordan's friends were sympathetic when he told them the diagnosis, but his family had serious concerns: would it kill him and was it hereditary?
Jordan's friends were sympathetic when he told them the diagnosis, but his family had serious concerns: would it kill him and was it hereditary?
How did they react generally?
Great sympathy... friends with great sympathy and ‘can we do anything?’ You know, it doesn’t matter how things go. But with the family obviously it was much more serious, you know' ‘Will it kill you?’ my brother [clears throat], who lives many miles away, and I don’t see a lot of, but we chat on the phone occasionally – he wanted to know was it, would it be hereditary? [Laughs] So, I said, ‘No, not very likely.’ He’s four years older than me and he’s been circumcised, which was well from a very early age I suppose. So, I told him it’s not going to like be a worry for him [Coughs].
Jordan feels his family has become closer since his illness; his two daughters were supportive but coped in different ways.
Jordan feels his family has become closer since his illness; his two daughters were supportive but coped in different ways.
The support from friends and family was very nice to have. And although they pushed me to have the surgery and I felt very intimidated by that… I feel it’s brought as very closer, close together as a family which is which is nice. I have a daughter who lives in Spain and she’ll probably ring us once a month but now she sort of rings twice a week to check up how I am. And all through the time to check I was okay and how her mum is and that sort of thing so I feel that’s positive. It is interesting because my younger daughter only lives off 15 miles away. She didn’t want to come and see me because she was worried about me and she’s a bit like me head in the sand and… she said she couldn’t bear to sort of see me because she was worried that you know I was going to die or whatever. And she thought if she saw a lot of me she’d be pestering to have the surgery so that’s her way of getting over that. But now it’s back to normal.
Jordon went into hospital the night before surgery, he had a general anaesthetic and woke up after 5 hours with a catheter in for urination; he couldn't fault the staff and went home after 5 days.
Jordon went into hospital the night before surgery, he had a general anaesthetic and woke up after 5 hours with a catheter in for urination; he couldn't fault the staff and went home after 5 days.
September the 27th admitted to the hospital on the 26th on the Monday night about 7 o’clock. They allowed me to eat up till 10 o’clock and then no food, and didn’t sleep very well that night. They told me I’d be in about 11 o’clock in the morning and I was there at a quarter to 11.Pre-med, the… usual sort of thing - straight in, terrific staff at the hospital, couldn’t be faulted. I had my own little room, which was really nice [laugh], my own telly [laugh]. That was great. And then, so I went in and I saw the clock, quarter to 11 as I was dropping off. And I woke up again about 4 o’clock, and that was it, all done and dusted. A catheter in the end and a little bag and I could hardly move. I was – and they said, ‘Just lay on your back.’ And sort of dozing in and out of sleep for the rest of the day. I think I… yeah I had visitors that night. So that was quite amazing. My wife is not too good at driving in the dark, so her sister came over to stay with her and they shared the driving. So she had the support there, which was very nice and she came, sort of just a little… to check that I was still alive [laugh]. The night after the operation, so that was good. And so after that I was getting better each and every day, which was good.
And how long did you stay in hospital?
After the operation is, was... 5 nights after that. Yep. And they said as soon as the graft had taken properly and as soon as I could get the catheter out and urinate as normal, they’d let me go home, so they took the catheter out about 7 o’clock on Sunday morning and I was home by half past 4 in the afternoon. Glad to be out. But they were fantastic. Whole staff. It was a really good set-up and… well couldn’t fault it.
After his partial penectomy and reconstruction, Jordan was given morphine via a pump that he could control himself, but he didn't need it very much; he stopped using paracetamol after three days.
After his partial penectomy and reconstruction, Jordan was given morphine via a pump that he could control himself, but he didn't need it very much; he stopped using paracetamol after three days.
Were you in any pain after the operation?
Not, not vastly, I’d just say discomfort. They gave me the morphine and a little a little button on a lead, that if I wanted to increase the… But I hardly needed that at all. I think after about three days I had even dispensed with the painkillers because I’m not much of a one for the painkillers. And that was only paracetamol anyway, but they were available. So…
The support of Jordan's wife has been vital in helping him overcome his initial feeling that he was 'less of a man'.
The support of Jordan's wife has been vital in helping him overcome his initial feeling that he was 'less of a man'.
How about your mental health?
[Laughs] Crazy as ever. I okay. I feel good in myself. I feel good about myself now and possibly trying to reinvent myself. Because, a few months ago for, I mean not a day went by that I didn’t think about it. Obviously every time I was going to the toilet I’d be touching it and seeing it and it was a worry and I was wondering what the end result was going to be. But now it’s not such a worry. It’s possible that it might recur, that I might get a… you know, a bad result from the surgery or anything like that. I don’t know. But at the moment I feel at least I’ve done my best with what... information and facilities were available.
Has there been any effect on your confidence or self-esteem?
Before the surgery yes but since then no. I think it’s all been good, very positive. And... what’s particularly nice is that... you know a lot of people have bothered about me and sent me cards and boxes of chocolates and things like that so that’s just great and nice bottles of wine. So that’s the upside, you know that people care about you rather than you’re just a part of the furniture. Which I’m sure they don’t really think but it’s it can seem that way. So yeah my self-esteem is fine and it’s nice in a way that I’ve been able to have a little bit of a back seat for a month and people don’t expect too much of me.
Has there been any impact on your sense of masculinity?
Initially yes, but not at the moment, no. I think my wife did say to me, well I don’t think I know my wife did say to me, that even if I had to have my penis amputated, it wouldn’t make any difference to her as she loved me or saw me as a man. So that was very encouraging. So I’d say [laugh] the positive support of your spouse is vital.
Jordan was relieved when he rang the hospital the day of his operation and he was initially told that there was no bed available.
Jordan was relieved when he rang the hospital the day of his operation and he was initially told that there was no bed available.
Yes I well [laughs] I’ll tell you how I felt. During the day, that day, that Monday, because I knew I was, I had to ring the hospital, the ward at half past eight in the morning to check that there was a bed there. And I couldn’t get through because obviously they were very busy. And eventually at half past nine in the morning, a very flustered nurse said, you know, ‘What do you want?’ I said, ‘Well I’m booking in for my surgery, is there a bed available?’ ‘No there isn’t a bed available.’ So I thought to myself, ‘Yipee, you can put it off.’ ‘Ring back at lunchtime.’ So I rang back at lunchtime and there was a bed available and that was that. So, I just didn’t want it to happen and wished it would go away, and… hoped for any other way other than go through the surgery.
After the surgery Jordan felt glad it was over and he was pleased that he had done it.
After the surgery Jordan felt glad it was over and he was pleased that he had done it.
After the surgery, can you remember how you felt like?
Glad it was over. And hopeful, hopeful that it had done the trick, and that I might have a full recovery. And pleased that I’d done it, there’s no doubt about that, because mainly because I felt that I was doing what my family wanted me to do. Had it been me – and I think a lot of men do tend to leave things, when they shouldn’t do, but obviously their love of me and wanting me to have a productive life and live on a bit longer, I felt I’d done it for them as well so… That’s as much as I can say about that.
Jordan says he doesn't have the physical strength he once had but he has more energy than 6 months ago; he hopes to move from physical work to desk-based work at home.
Jordan says he doesn't have the physical strength he once had but he has more energy than 6 months ago; he hopes to move from physical work to desk-based work at home.
I’ve been very active. Work’s been very difficult over the last few years anyway with the recession so, we have struggled. We’ve just bought an internet business which we’re trying to develop so I can work from home because I, I don’t have the physical strength I had anyway. So we’re sort of heading in that direction and seeing how that goes. But I think I’ve got more energy than I had 6 months ago which can only be good.
Did the process cause any problems with your finances?
Not the process but just the, my general state of health, that I’ve not been able to work physically so, or... yeah I... To be fair I was running out of energy part way through the day. I couldn’t decide whether that was just my age or, or whatever but I’ve always been very physical, done lots of building work and you know, work around the farm except for the last couple of years.
Jordan had a district nurse visit him at his house to check his dressings. At the moment he feels as though he doesn't know what is happening to his penis and whether the cancer will return.
Jordan had a district nurse visit him at his house to check his dressings. At the moment he feels as though he doesn't know what is happening to his penis and whether the cancer will return.
Have you received any other aftercare from the hospital?
The week after I came home I had to get the dressing off my skin graft on my leg and the district nurse came along just to check up on that and asked me if I wanted it rebound but I didn’t and did I need anything else. No I didn’t, so there’s been nothing since then.
How has the healing process been?
It’s good. It’s changing shape, which I didn’t expect. I just expect to stay as it was. And there’s a bit of a lump there, which wasn’t there before and about a week ago I was worried that could be the growth coming back but it seems to have just.. be the shape of the skin. So whether that is something that happens I don’t know but he will tell me… presumably whether it’s been a success or not. So there’s still that worry in my mind at the bottom as to whether that is something coming back. But it’s just changed shape and it seems to have stayed that shape. But there’s no discharge or scab or blood or anything like that. So that is still a bit up in the air. But this time next week I’ll know a bit more.
Jordan describes how his penis has lost sensitivity since the operation.
Jordan describes how his penis has lost sensitivity since the operation.
Right now then I one of my favourite things is walking the dogs and I always used to like to do two miles a day with them but they’re getting old and doddery now so they don’t want to come but I still I’m back up to walking best part of two miles a day now. I have a little set route I go every day or vary it. I’m back to doing that. Now before the surgery the end of my penis was rubbing on my leg and that was quite uncomfortable plus there was a slight discharge as well. And the interesting thing was I always used to wear y-fronts before, which would sort of form a pouch for the penis and that’s what I was comfortable with. But that was getting uncomfortable. So I’d been bought a pair of boxer shorts many years ago but I didn’t like that because I didn’t like the penis, penis dangling but once I starting wearing that was a lot easier. But now I only wear boxer shorts because that’s, it’s I can hardly feel anything down there at all which is which is good. Having said that I’m not feeling anything, before the surgery the glans the end of my penis was always very sensitive because I’d not been circumcised and I was very worried that... he was going to circumcise me anyway at the same time as this surgery and the skin graft. So I was anticipating that it would be very sensitive there but because he had to put new skin on anyway there’s not a lot of sensitivity there. So I can poke it around and it doesn’t feel as sensitive as it was before. So that’s a little bit of a downside obviously from the sensitivity point of view. But it’s an upside in that it doesn’t rub or anything like that.
Jordan says he has a better quality of life after treatment as he no longer has discomfort when urinating. He goes into a cubicle and sits down to wee to avoid spraying.
Jordan says he has a better quality of life after treatment as he no longer has discomfort when urinating. He goes into a cubicle and sits down to wee to avoid spraying.
No I would say... it’s a better quality of life because I haven’t got the discomfort when I was urinating now which it was getting towards. Because it the hole was starting to close up because it was right round there. But now although… as I explained it’s, it is, more awkward going to the toilet. I can’t I don’t stand there with other blokes. I can do on a stall… where but not on a on a urinal because there’s a fair chance I’d miss it. And a toilet bowl is difficult to get it exactly right so I sit down and that just makes it a lot easier.
Does that affect your social life in any way?
No, no. It’s just I suppose nobody sees me. You go into a cubicle and they think you’re doing a number two so that’s alright. Sometimes you have to wait as opposed to stand by a urinal but my lifestyle is such that it doesn’t impact on that at all.
Jordan feels the NHS gets a bad press, but he couldn't fault the service he received.
Jordan feels the NHS gets a bad press, but he couldn't fault the service he received.
Is there any other ways which you feel the service which you received could be improved?
No to be honest. I mean, we know the National Health Service is very stretched but I couldn’t fault it at all. And I’d recommend it to anybody. I do feel that the NHS gets a lot of bad press but I can only speak highly of it.