Penile Cancer

I’d had a few problems because they’d taken the catheter out when they came back – this was about two weeks after I’d come back, sorry, I came back and saw then the next day. They took my catheter – I was having trouble... at night and I was having to wear pads because my bladder wasn’t strong enough, it was, I was weeing and then leaking two or three times the first couple of nights so I decided to go, we went and got some pads and suchlike from the chemist and I was wearing them at night and I felt a bit… down then and that was the worst of the whole thing funnily enough and probably a man thing, you don’t want to wet the bed if you know what I mean but... Then I know exact date, it was the 13th of September I was back in to see them and they did some tests and they found that my bladder was still three quarters full after I’d just passed water and they said, “Oh, there’s something wrong here der…der…der…” Anyway the surgeon was called and he came in, saw me and he said, “Right, you’re being kept in and I’m going to have a look at that in a couple of days.” So I wasn’t very happy about that purely because it was my birthday and I was meant to be taking the whole family out for dinner that night. It probably saved me money but that wasn’t the main thing on my mind at the time. Anyway, I went in and I had the op about two days later, they didn’t do it the next day, I think they was going to do it but there was an emergency or something and they said, “Terribly sorry you’re going to be, it won’t be today it’ll be tomorrow.” So that… anyway I then had that op and the...I was a bit woozy coming round. It was on the Friday the op, on the Saturday my wife and my daughter came up to see me, I remember them coming but don’t remember much about it. And Sunday morning the surgeon came round to see me and he said, “Well” he said “all good news, everything’s sorted out, I’ve sorted your water works out” and he said “from now on you’ll be peeing like a twenty three year old” and I can honestly say I am but we won’t go into that! [chuckles] I’m, he’s really you know, sorted it all out.

I was readmitted on the Monday morning and by this time I had questions to ask, and eventually I got to see a bloke, [doctor] to find out what were going on and he suggested that I go on a course of chemotherapy to try and like save my penis, which I did do, and I think it was four courses I was supposed to have of this chemotherapy and I only had two. I sailed the first, I sailed through my first session and the bags that I had on lasted for a day and I had four bags on, which just like took it into the fifth day. So after I’d had, like the first session of chemotherapy and then I had three week off and then I went back in after three week, to carry on my chemotherapy. And that’s when, on [hesitation] the second course, the second session I was really, really poorly. I got ulcers in my mouth, feeling sick so I had, I went through that and I went home but I were really poorly then. I lay down on the settee and was feeling sick and everything, I can’t remember really how long it lasted for. And then, when I went back for my third course of chemotherapy my blood count were so far down that [doctor] decided that I shouldn’t have chemotherapy – that he stopped that – and I had to go on a course of radiotherapy which was it were like the radiotherapy was– they built a device so I could put it round my penis and this machine were, it started off and it did like forty five seconds this side and then the whole machine turned over and it did 45 seconds that.

So then I had to be measured up for a mould and I went to this basement in London and I went for my appointment for the mould. So they took me, so I waited outside and then they said, “Ok, come in” and I went into this room and there were all these moulds around the room and I thought ‘what’s going on here?’ and they said, I said “ Are all these moulds of men?” They said, “Oh yeh, yeh” and I realised then, as I was saying earlier, there’s a lot more of it about than we imagine you know. And  if ever you want an inferiority complex just go into one of those laboratories because I was saying “what! That’s a real…!” “oh yeh, that’s a man, yeh, it’s an enormous thing.”So, I had the mould made and then the funniest thing was being in a waiting room to have a mould made of your penis for penile cancer and sitting in a room with two men who just did not want to talk and we were all just very nervously looking at each other and I’d say a few things and it’s, just shows you how difficult it was and how much support people need to clearly be able to…. and it’s still is, penile cancer is a… it’s funny, I’m relaxed about it, I think that’s what I have, what I live with but it still terrifies people, it’s like much more than breast cancer really, I talk to a lot of women about that.

But anyway, so then I had the radiotherapy and it was only actually three days of morning and night, it was like an appointment, come for three days, six minutes in the morning, six minutes in the afternoon. I said, “Is that it?” and they said “yeh”. And that’s why I was thinking about my girlfriend because at that point, when I had the radiotherapy, the actual three days of radiotherapy, I saw her the day after or something and for one day she was a bit squeamish. The nurse told me, they’d said that a lot of people split up at this point, there’s too much for them to handle. And of course the thing about it was that it had this amazing effect on my penis, it sort of exploded and the [hesitation] it was incredibly painful and sore but then remarkably it all healed up very quickly. So that was extraordinary.

Well when he put me on the radiotherapy he told me that I’d experience the skin coming off my penis as I was going through the course but none of that transpired. I didn’t have any side effects or anything with the radiotherapy until the 20 sessions had stopped. And it wasn’t probably while about a week later, could have even been maybe two weeks later – obviously I don’t know how the radiotherapy works and that but when I started going to the toilet and having a wee and then when I took my hand from my penis all the skin was coming off and it was all going red and it was all, well the skin was all peeling off and that, and it was very, very uncomfortable. And as I say like, I used to, [hesitation] to stop it I don’t know how can I put it, I had to get in the bath to ease it. It were, I wasn’t in pain or anything but it were just, you know sometimes you just want to scratch it, and so I found, I found out that just sitting in the bath with just clear lukewarm water and letting the heat get round it, that used to ease it and that. And [hesitation] I can’t really tell you how long that went on for but like eventually it all does all subside and goes down.

This radiotherapy, how it was explained to me were it like decreases the cancer, it like makes the cancer grow smaller so obviously the tube inside my penis was having, was having the radiotherapy and that must have contracted as well because I found out that when I peed it just came out so fast and with it splashing back I had to have a little bit of an operation, I was only in for a couple of hours, go down to the and I don’t know how they widened it but after the operation they gave me some (I don’t know what they call them) they were just like a little plastic tube and I used to put some gel on it and I used to stick that down my penis to keep, to keep the what do you call it, urethra or, to keep that wide so I could pee normally instead of it coming out fine and splattering about all over. So once I used to stick that down and widen it up, I could pee, you know it used to come out as normal like. But if I didn’t put this tube down it and keep it open then all it would do was just go back to like it used to be before you know, it just used to come out fast and splatter all over and that like. So as long as I kept it open it was ok.

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.
 

And then once that had finished it was then the following two months that were probably the worse because the radiation damage was quite horrendous, because all the skin falls off, it’s very sore and you don’t see anybody[laughs], it’s like ‘you’re done now’ and they’re sort of say ‘we’ll see you in a month or two.’ and it’s only when you go back in and they’re only sort of checking for lumps and bumps to see if it’s spread anywhere. And I went on then for like five years, just keep going back, it’s like every month then every two months, then every three months, every six months, every year and then they said, ‘Right, well you should be ok now five years have passed – no problem.’. And I was told at the time when I had the radiotherapy that I had to look after the skin because it would be damaged with radiation which is fair enough and I had to use like baby soaps and things like that so it didn’t irritate it. And I thought it was just at that time because during the five years of the treatment, well not the treatment but five years of going back for the checkups and stuff err it had basically healed up. It still looks a bit of a mess now, it’s as if it’s been trapped in a car door but it works [laughs], it’s all fine and dandy. But I wasn’t sort of given any sort of advice on the aftercare after, whereas like now I have to put moisturiser on sort of every day because the radiation damage is still there, it’s still progressing, it’s still happening and this is like fourteen years on, which I wasn’t told anything about at the time.  And that’s, were are we up to now, I’d, I’d just been discharged from the hospital and I basically stopped, you know looking after it if you like, I just got on with my life and I was applying some creams now and again when I could remember or whatever. Or if it did get particularly dry because err sometimes the skin on it really dries out and gets very flaky.

So then I started the Interferon and this went on for a couple of months over the summer and that made me feel really, really low and it had this effect within a couple of days of all my nails falling off. So it’s quite a strong, powerful err drug but the idea of it was that it would help the immune system and it would help fight the cancer or... help the body deal with it and make it… and I felt that it was sort of preparing me for maybe things that they would do later on which would be helpful.