David thinks that nothing has really changed although he's still waiting to find out the...
And I’m still waiting to find out really the implications of the removal of the lymph nodes and the lymphedema you know, the radiotherapy. On balance I think I’ll get back to not quite to where I was but we’ll see. You know, we’ll just have to see. I shall go going back to the gym. I’ve been back a few times and I’ll be going back more and building up a bit more walking and I’m off on holiday so that will give me for a for 9 days so that will give me a lot more opportunity to do some more, you know, bit more walking around and back to climbing walls and very easy standard I have to say but I’m back to them. So we’ll just have, you know, just have to wait and see. But I mean if everything goes as it seems to be going there’s every chance that it won’t leave me with anymore effects than getting older is anyway. I mean if the cancer comes back I mean that clearly is another matter. I’m talking about it as though it’s not there of course... I’m thinking about the earlier questions now. But if it makes its presence felt in ways that aren’t helpful then that takes it obviously into another dimension. But generally the effects of the two operations back to the first operation, I don’t really say it’s had any major effect at all. And the effects of the second one it there’s a very good chance that that’s not going to have very much effect or any if we if the lymphatics. I mean the lymphatic system is having to learn to work without... you know, some bits really. And it will either do that or I think it will either get or get very close to doing that so…
Michael says hes not been walking well and thats causing him backache since the reconstructive...
It was three months before Paul regained some degree of mobility and 18 months later his walking...
Oh it’s really affected my walking I used to love to walk. I mean I think it was nearly a little over 13 years I used to collect for cancer people once a month like, and I used to have about twenty roads and about hundred calls to make you know, collecting for this cancer like Tenovus it’s called, and I used to enjoy that because I love walking but since I had this last operation it’s restricted my walking, yeh. I mean when I came out of hospital I was told I couldn’t go outside the front door for at least a couple of weeks so I’d district nurses coming in every day to, mainly for the skin grafts, doing the dressings for the skin grafts and I couldn’t believe just how weak you can be I mean I was saying to the district nurses I said, “Blimey” I said “ if I get up just to make a cup of tea and say a bit of toast or something as soon as I’ve done that I just have to throw myself back in the armchair totally and completely exhausted, and they said, “You’re doing too much too quick” they said “it’ll take months” which it did, it took me a good three solid months to sort of get back to some kind of... but even now after eighteen months like it’s really affected my walking, really restricted it like. So I mean last March I was able to get myself a Blue Badge so yes to give you some kind of idea about the walking, if I’m out with friends you know I might walk for five, might be ten minutes then I’ve got to sit down for another five minutes or ten minutes so that’s how it is with my walking and I think it’s down to the kind of operation that I’ve had. I mean I don’t know for sure because I haven’t been told. You know, I think with what you’ve been asking here I think there’s quite a lot I haven’t been told really, so…
Marks legs are still weak, but he has been making slow progress.
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.
John cannot stand for as long as he used to and he tires very easily.
I love my singing. The thing that’s affected my singing is I don’t I can’t stand as much… on my on my feet. I tire very easily when I’m standing on my feet. And I think that’s because these operations were in my groin. I was also told that that it may affect my left leg where the lymph nodes were re removed. It hasn’t affected my left leg but I think maybe it has... but not in a particularly negative way. I mean I can walk and so forth. Presently I’ve got sciatica but that’s [chuckles]…but I can walk and go out and stuff like that so I think it’s just in terms of my kind of… ability to coordinate and organise my thoughts. That’s I think it has affected that. But that might be age as well, you know.
Jim could walk up and down stairs, it was a bit slower but it wasnt uncomfortable.
Initially I stayed home for a week but I then returned to work because I felt I was capable of going back to work after a week. A lot of people said, ‘Well you should have taken a month off’ but frankly one week was enough for me. And the only area that was giving me problems was actually going to the toilet. The rest of it I could walk... walking up and down stairs was a little bit slower but not... it wasn’t uncomfortable and it wasn’t difficult but a little bit slower than I normally would. But going to the toilet was definitely the more tricky situation. But my memories are coming back now and I would say it wasn’t a big issue at all. I was lucky that that it wasn’t painful. And there were no problems attached to it. Just taking care really and being careful, so…
For Colin there was no soreness, although there was some discomfort immediately after the...
But the actual... there was no soreness there, there was no, I used to pass water out comfortable with no problems. So really I had no discomfort or anything. The only discomfort I did have was that it was like... if I had like… the bed clothes was laying heavy obviously it had... oh don’t forget that this is only a month prior to me having to the operation, so it would still be tender there. Which I never took no notice off I thought well that was it. But… looking at it in hindsight now is obviously it was getting infected again. Where they’d actually took the actual gland away, the end of the penis away and reconstructed, it was actually coming back again. You know so…
Frank Z says that he had some soreness but was surprised how little discomfort there was.
There was no problem… to be honest I’ve never had any discomfort especially with this last operation. The other ones I got soreness because err as you would appreciate, that anything, any wound, you’ll get a little bit of soreness from. But the major operation I was amazed at how little discomfort I did get. And the main thing what you tend to do is obey your instructions when you’re in hospital because it, it brings forward going home quicker. I must put that in.
After the operation early morning erections were painful for Tim because he still had the...
Yes that was the most painful bit cause I found I still got the, still got your nocturnal, your early morning erections, and that was the reason I didn’t want my wife in the bed because they, because of course I still had all the stitches from the skin transplant round the edges. And I found that I got those erections and they were still pulling they were pulling the stitches and that was very painful in the morning [chuckles] and you know, and I had to find all sorts of ways of, of thinking of other things to try and get that erection down as quick as possible [chuckles]. So it was happening but it was very painful and that was probably the most painful bit of the whole experience.
John tells us how his penis was incredibly sensitive and he was vulnerable to infection.
You have all the problems of dealing with a – you know my penis is incredibly sensitive, it’s vulnerable to infections and I’m in and out “is this bad?” “No” “here’s another thing come up, oh no” “that’s alright,” you know swabs, all those kind of things. The lymphoedema, the cellulitis that is a result from all the treatment which you then have to live with, you have to manage it. You can’t….luckily what I do is I work for myself so it’s not so important that I’m... at times I just have to be in bed or I can’t do things.
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.
The scarring after Toms operation appeared to be getting bigger which concerned him.
Ah, so that’s something – a side issue on that also was the fact that the scarring appeared to be getting bigger and I then became fairly highly concerned. This was about the October period as I’d had the operation in July. And they had said you know that ‘you should start to heal up’ and it had done but the, the, the scars as I said started to look a little bit different and so I was then concerned, you know, ‘has the cancer come back?’ ‘Was it not successful?’ and all these thoughts go through your mind. I rang up the cancer hospital again and I’ve got to say that with all the calls and everything that, where I sort of, they were very, very good, there was no ‘we’ll put you on hold for a minute’ or anything like that, it was they were very, very good. I had a discussion with them and they said, ‘Well I don’t think it’s anything to worry about but you’d better come in and we’ll have a look at you. Can you come in next Wednesday’ or whenever it was. So within a short space of time they had me in there and they examined me and they said, ‘No you’re perfectly ok. You’re due to come in again in about six weeks time but as far as we’re concerned you can now leave it for six months time.’ That things are fine, that some scar tissue takes different forms and instead of being the normal scars that drop off this is the keratin which nails and horns are normally made of and it’s that form of scarring that, that’s taking place at the moment in this tissue. So effectively I was growing a horn on the end of my penis, which obviously [laughs] creates a whole new scenario of feeling horny you know! And I’ve got to say it’s splashed a few glasses of wine over a dinner table since when we discussed it you see, because it, there has to be funny side to certain things and this was one of them.
For the first time since the operation Tims penis is beginning to feel like its his.
How long before the scars truly healed? I’ve only really felt comfortable with the, yeh with the penis and the skin graft in the last, in the last couple of months. So it’s now, it’s now October. I went to see the consultant about three weeks ago, and he said, ‘How are, how are things feeling?’ I said, ‘Now for the first time in the last month or so, I’m feeling it is my penis back and it’s not yours that you’ve been operating on.’ So that’s when it feels as though it’s healed. It looks, it looks small. It doesn’t look as though there’s any stitches. The colouration looks normal flesh colour and so that’s - yeah. But that’s about the time it starts to feel mine again.
Jim says that you cant see scars because the skin has been pulled inside.
Well you can’t really see much because the skin has been sort of pulled inside. It’s not left out in the open and you can see visible scars. It’s really quite clever, you know, I’m very impressed with how it’s all gone. But you still feel a bit strange not having a head there. But the... you... well I can’t really see any scars. I think you’d have to pull the skin back quite a bit… for that. But there’s not much give at the head either because it’s all very tight there. So you can’t really pull the skin back as you could before.
After his biopsy John had an infection. John describes the impact of the infection.
I had a problem with operation when I first had it, when I had the biopsy which led to an infection which is another thing which is part of my whole experience is the constant infections from operations etcetera which is a whole other thing that you have to live with and handle which are far worse than - actually the symptoms seem to be far worse than the actual cancer is, you know. I had this sort of explosion in my left groin which I went to the, that weekend, on the Monday I went to the doctor and I said, “I’m not sure if I’m over reacting but do you think I should have this looked at?” and he said “you’d better go now to Accident and Emergency” which I did. And at this point I was beginning to – people were beginning to know me in Accident and Emergency, I’d been in a few times with different things and I’ll go to the doctor just to check and saying “oh no, you’d better go and have a….” and I was taken in and there was this huge, it was like a volcanic eruption in my groin, and it was excreting fluid, and disgusting, and I really thought it was dangerous and it was getting worse every minute and I was in hospital, in Accident and Emergency, waiting to be – I was sized up ready for operating on and for some reason a Macmillan nurse who had been assigned to me earlier on – they talk to you about everything and talk to you about all the back up things that are available – she happened to be in the hospital and saw that I was in there and was able to tell the people that were dealing with me to stop and to take me… so they took me out of the Accident and Emergency ward and brought in the consultants the next day who were treating me and they decided that they had to do an operation but I was incredibly fortunate because apparently if the Accident and Emergency people had gone in they wouldn’t have been able to deal with it because they wouldn’t have known the whole background etcetera and they wouldn’t have realised I shouldn’t have been operated on at that point.
Simon has found it difficult passing water and he has had a couple of urinary tract infections.
Well like I say, it’s difficult, it’s not easy passing water where I am, you know. It’s alright if there’s proper toilets and you can take your trousers off that’s no problem but it’s just that if you can’t really go in urinals like you would before and if you’re out and about and you’re bursting... it’s difficult because you’ve got to more or less to get undressed. That’s about the worst of it really. I did have a couple of water infections but they’ve gone now like, they were, they were quite bad.
Mark spent a month in isolation because the hospital staff didnt know what the infection was and...
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.
Tim was prescribed different courses of antibiotics to treat his infection.
I found that when I came out of, when I came back from the hospital they sent me home with a course of antibiotics. And then it seemed that as I got to the end of those, and the wounds didn’t appear to be clearing up very well, so twice I got, I had to have the local GP out to the house who then - two doctors came out at about weekly intervals and both of them, they pre- prescribed different courses of antibiotics. So I think at one stage I had one set of blue pills and one set of white pills and the blue pills had to be taken three hours after meals, every three hours after meals, and the white pills had to be taken every four hours after meals. Trying to work out how to fit all those in was, well I gave it to an A-level maths student to work out [chuckles].
Last reviewed July 2017.
Last updated January 2015.