Well what happens after that of course is very much I think the standard process. I think the… immediately after I was going in about every three months for a kind of visual check. And I was having scans probably every three months for the firstthe beginning. And then I think it went to six months and I think the checks were six months. And so there was no there was no there was no reoccurrences, it at that stage anyway. It it’s strange because thinking back I’d just assumed… I think I wonder if it was something to do with the surgery being so good and specific and everything appearing to be clear and was well was clear. I just I think we rather assumed it would it would never it would never recur and that was it. And the original operation would be about I think it would be July 2008 so and then things went absolutely fine until early this year, 2011.

And I just made the assumption I mean I that that it wouldn’t return and I’d never felt concerned about having the visual check and physical check nor the results of the scan. I just kind of made the assumption all would be well and that was something in the past and it was almost as though I’d never really had cancer, just had this piece of surgery which didn’t really leave any particular difficult after effects.

And I’ve that barely affected me, I felt a little bit tired until I got to about four and a half weeks into the six weeks. it’s every day for six weeks apart from weekends so it’s every weekday. And then the skin started to get a bit sore, some of it broke down but it did heal pretty quickly. It was it was exactly what they said would happen. And but it did it… I did start to feel more tired about three weeks in. And it was at that stage when I did start to feel some effects of lymphoedema.

So the recovery actually from the radiotherapy has probably has been more difficult than from the actual surgery itself, although I did have this after effects and therefore spent two weeks in hospital in effect or had three days at home. But the recovery is definitely slower from the radiotherapy. Though I’m told the amount of lymphoedema I’ve got is relatively slight compared with what could happen.

Anyway I went in on the 16th. I had the operation and was out I was… oh no that’s right I was in for about eight days because the worry is about getting infection after the operation. I think this is probably a standard process. They thought I was clear. I came I came home for three days. The district nurse didn’t was got was very anxious about what, the redness I was developing, the soreness. So I went back to Accident and Emergency and they readmitted me straight away. So I was in for about another seven days after that. But again the treatment I had on the ward was excellent. The only delay was when I went in the second time it took ages to get the antibiotics and that was all to do with getting a prescription from a doctor which is always frustrating because that’s the only reason you’re back in. You know, you’re there and of course what you want is intravenous antibiotic. But it took I must have it took nearly half a day to get started on that. So that was that was kind of like frustrating.

But the general treatment on the ward on both occasions, with both the initial and the follow-up, was excellent.

And the nurse attending, one of the nurses, who looked at the dressing in the evening- you stay in overnight- and she said, Did you know you’ve got a bit of a lump here?’ And I said well I had realised and I said that I said, I have had cancer and I attend to have it checked, you see, immediately after I’ve got this operation out’ This would again be about the middle of January and I think it was a Friday evening she told me this and I was going back home on Saturday. And on Monday morning I rang [coughs] the cancer centre. As I spoke to I think it was either the, I think it was both the specialist nurse and the secretary the consultant. And he saw me on Friday, the main consultant, and again did the physical visual check and he said, I think that’s cancer. Said, We’ll get a scan done just to verify it but I’m, you know, I’m certain that’s I’m afraid you’ve got, you know, you’ve got cancer again. So again he didn’t there was no you know holding back. So I again asked about what the, you know talked about it, what the prognosis was, what would happen next. And he said he would they would remove the lymph nodes and I may or may not need radiotherapy afterwards. So I think it was I was due in to go in… it was it was… I was due in originally to go in on I think it was March the 2nd. Which was very quick and I think it had took about 5 weeks after I’d seen him. And I’d had had the discussion with him because I’d, because of the operation I’d had on the for the atrial fibrillation catheter ablation process, I’d been on some blood thinners.

And so that was therefore a factor in the operation for the removal of the lymph nodes, so that it had to be off these. He said, the cancer consultant said, he would speak to the specialist who’d done the catheter ablation. But in the meantime I spoke to him. Well I spoke to the specialist nurse on that side and he the cancer specialist the catheter ablation specialist was there. And they said, No you can come off it straight away’ you know in readiness for the operation. But that’s I well I made I made the phone call again to double check because I wasn’t aware there’d been a conversation between the two consultants and so I came, it meant I came off about 8, 9 days before the operation was due on March the 2nd. And I thought they’d done everything possible to make sure that this was this was this was okay. But then with about 3 days to go the cancer specialist consultant then asked the he must have been asking at one of the meetings what had happened about this business of me being on Warfarin. And he then said, Well if he’s only been off 8 days it’s not 10 days. It’s not enough. So the operation was put back a fortnight.

So I did feel I did feel aggrieved about that because I’d done everything possible to signal, you know, this requirement and I felt it hadn’t it did put the operation back a fortnight. So but then I’d realised well what’s done is done. The slot’s missed so it will go back a fortnight. But in a way I could have done without that and it did feel it did it… the thing that seems to be a problem in health matters is always this matter of one specialist con. Working with another one if that’s what happened.

The most awkward thing because they do a skin graft onto the end of the penis they take a patch of skin off your thigh and that then has to heal up. So keeping the bandage on, finding a way of maintaining the bandage because I think I was in for it overnight. I can’t remember exactly. I think it was overnight one night And then you come home. So the issue then was, as I remember it, was keeping the bandage in place. Anyway that was that was solved because my family are very friendly with a with an ex-district nurse who lived next door but one or two and she was able to solve the problem with a with a which involved I think the use of pair of tights or one leg of a pair of tights to hold it in place. So that was a slight a slight macho issue.

But the, I think I went in about a week later and the stitches were removed and also the dressing was removed from the from the where skin graft had been taken because that started to heal very quickly. So the recovery from that was remarkably quick.

I think the thing that it probably that I’ve found frustrating at times is wanting to know right from the start about what was it I could do. And particularly with this lymph with dealing with the remove of the lymph nodes which has been more of an issue I suspect really than the original operation for the penile cancer is the is what is it I can do for myself? How much should I be doing and not doing? Should I be physically exercising more? What about lifestyle? Diet? What about alcohol? I went 6 months without alcohol after I had the lymph nodes removed and I’m pretty sure it did me a lot of good. The main consultant said the cancer consultant said it wouldn’t make any difference one way or the other. So I had a bit of alcohol since and I’m fairly con… fairly certain that I was probably better without it. But I think it really would be interesting to get a lot more data about what people do, what other people do and what their experiences are of dealing with the side effects I suppose and the social effects, you know. And it would be really important I think, really interesting to know a lot more about people’s experiences. And I think the, I think it it’s full of greyness. It’s not black or white and because what they say, what the consultant will tell me, the doctors will tell me, the nurses will tell me, the specialist nurse will say is well it all depends because everybody’s different. And of course I’m sure that’s right so I think giving specific advice is probably difficult.

But I think more experience, more knowledge could be gathered in these areas and I personally would have found it enormously helpful.

And he told me that I should be able to err everything would function after the operation. That, you know, that there was a very, very good chance that it would, as I remember. But I also I also remember that I think I my wife was with me but I went in first on this occasion to see him. And then I think we said oh, you know, bring my wife in. And I think he said something she often she quotes this about him and he said that his first words to her was I’ve just been explaining to your husband that he has cancer. And so she was she had it head on probably as quickly as I did. So the story the story of the working with the consultant is that there’s never been any there’s never been any of the thing where of the consultant, which historically I believe happened a lot, where they told you very little or as little as possible. My experience has been that he tells it head on as soon as possible and immediately as possible so there is no absolutely no doubt. Which I have to say personally I would prefer that approach than being diffident or holding back or whatever. Though I think it is quite a lot to come to terms with, you know, very quickly. So anyway that after at that point, the other thing that I found extremely helpful as I did with the procedure when I had the atrial fibrillation, was the availability of a specialist nurse. And so because with all these things is that the, and particularly with where there’s cancer and where it does feel, because it is penile cancer it does raise all sorts of, well it raised some fears in me about what would be the implications. Would be able to have a any kind of sex life afterwards or whatever. The fact that it’s cancer at all, would it return? That’s probably the bigger one actually. It maybe makes a difference being older about what the implications are. But none-less it it’s quite a lot to work through.

So what were your immediate thoughts on receiving the diagnosis of penile cancer?

I just I thought and having seen the consultant, I mean I suppose I was a bit I was surprised. I wasn’t particularly worried. I when the local the consultant at the local general hospital told me that it was you know likely that it was cancerous I think he he’d I spoke to him on the phone actually and I think he said to me something like Well the regional specialist I’ll refer you to the regional specialist and I know he’s very, very good and I’m sure he’ll see you very quickly. So I thought well that’s fine, I’m sure it’ll be sorted. And when I when I met the consultant I thought he told me and he thought the chances of cure, you know, were very good. It may be that it if there was any return I might have to have the lymph nodes removed. So I was I he gave me that knowledge early on and, as I say I think earlier, that I felt the operation had been successful. Well I think it had been successful. And I just rather assumed that had cleared it so I never took the threat of cancer, it never struck me as being particularly serious. Now I it’s interesting to think about it now retrospectively, was that because I was just blas√© or I wasn’t or was it because I wanted to deny it in some way, just saying oh well I may have it it’s kind of.. I didn’t really want to acknowledge it and take any notice it? I don’t think it is I don’t think that’s the reason. I just was I just thought it would, you know, it would it would go. I thought well I’m healthy. I am very healthy, you know been healthy all my life.

I would say that it’s been that he has talked in a… there’s a certain bluntness, almost a certain coldness about it. ther medics I’ve dealt with have had more warmth I have to say. But I think it’s a difficult matter. So I would much, much rather he was blunt and direct and didn’t hold anything back at all than sort of in a much more cautious way….I think have to say I think I said before, I think that having the specialist nurse where itit does is extremely helpful because I think the bluntness the thing is that you can only work out the what the implications or formulate some… the questions that you want answeringI mean I know it’s just standard isn’t it? To go and see the consultant and it’s almost impossible to think of the questions. You know all sorts of questions come to you afterwards and I think that that inevitably happens but I’d much rather I’d much rather know. I mean if he if I have to say to him what’s the prognosis?’ and he said oh you know he might say oh well I think you’ve yeah very good chance and should dorsquo; But what he what he will say straight away is well you’ve a 60% chance of living over 5 years. Which I suppose is slightly [chuckles] better than saying you’ve 40% chance of not living another 5 years. But you know precise… I mean that is a pretty that is pretty, a pretty big marker I suppose so if do have a return of it, if I’m you know if the 40 if it’s the 40% rather than the 60%, and have this return within 5 years then I’m then I’m not left in the dark then either. So I would rather have it that way. And I do think I do think perhaps it could be delivered in a less I don’t know somewhat cold manner. And yet he’s not a not a very formal sort ofan. But it must be it must be so difficult for them to be doing all that work with people and seeing I don’t know how many you know when he has one of his consultations in the morning I don’t know how many people he sees. 15? 20? 10?, 15?, 20? Dealing with all that and all those different emotions and all the rest of it potentially extraordinarily difficult. And then to have a head, you know, have your head straight and be able to perform the surgery, you know, perform the surgery and deal with deal with all the implications of that. it’s a phenomenal activity. it’s enough to drive most of us round the twist I would think with either anxiety or just run away from it. So I it’s it when I the more I think about it, you know, just talk about it it’s very understandable. And it’s better to be it’s better to be on the cold side and blunt rather than to be evasive and moving away as it were from the patient I think. Yeah.

Yes I was first aware of a sore, some kind of lump, which was just on the under underside of my foreskin. And it was probably it would be some months I think I was aware of this, it becoming more sore and tighter. And so I saw my GP who it interestingly it had been a GP who had who specialised in heart conditions. Which be a fairly big practice and I’d been seeing him for atrial fibrillation which is variable pulse rate. And he’d been diagnosing me to that, for that, looking at that and had actually directed me towards a specialist at in [Name of place] for that condition. Saved me actually a lot of time rather than going through the conventional referral to a general heart specialist. So that was particularly good by him and then I also mentioned that I’d got I was I was sort of, you know, suffering this soreness and he had a look at it. And so he sent me to a referral to a consultant who I saw very quickly at the local hospital, local general hospital. And he did a biopsy probably within a month, less than a month I should say, of the GP first saying that there was some concern.