Paul - Interview 12

Age at interview: 61

Age at diagnosis: 59

Brief Outline: Paul waited almost 2 years before consulting his GP about a large penile growth. Referral to a urologist resulted in surgery to remove the growth. He subsequently developed diabetes and his mobility is restricted. He is now clear of cancer.

Background: Paul is a single white male, he is now retired having previously worked as a tool renovator.

More about me...

Paul noticed a lump on his penis which he treated himself with various creams, however they had no effect and the lump grew larger and became more painful. He felt unable to tell anyone and was frightened to seek help from either friends or professionals. After about ten months the lump’s growth escalated and eventually virtually blocked the flow of urine. Paul was unable to sleep at night because he was so worried. A phone call from a close female friend triggered Paul to break down emotionally and tell her about his worries. Nearly two years after he had first noticed the initial lump Paul’s friend took him to his GP who sent an immediate referral to a consultant urologist at the local hospital, he was seen there within a week. After undergoing a biopsy under local anaesthetic the urologist was sufficiently concerned to, at the same time, remove most of the growth. The biopsy confirmed a diagnosis of cancer and because Paul had waited so long before seeking help it had spread to the tip of his penis. He was referred on to a consultant at a Specialist Penile Cancer Centre for more specialised treatment. The consultant there explained about the surgery that he was to undertake, Paul described this as one of the most horrendous moments of his life. Paul was to have the head of his penis removed and subsequent reconstructive surgery – he was 59 at the time. Following the first operation Paul was in bed for nearly a week, urinating via a bag. His first visit to the bathroom when he caught sight of himself in a mirror it was quite traumatic, “I nearly died of shock….you know, when you see that there’s hardly anything left.” Reconstructive surgery followed. He now has to have three monthly check-ups and will be seen for the next five years. He is currently clear of cancer.

Paul gets very depressed and says that he only feels like half a man. He has not taken up the offer of support from Macmillan Cancer Supportbut has support from a few close friends and family members. A normally introverted man, Paul now feels that socialising is even more difficult and avoids new friendships with women because of potential sexual contact. He finds he can no longer walk as far he used to and suffers from diabetes (he has been told this is could be a result of the trauma of penile cancer). He is also sometimes unable to stand when urinating.

Paul still gets very anxious before his three monthly check-ups but is thankful that his friend made him seek professional help. A few months later would have been too late. He now makes a regular donation to Marie Curie Cancer Care as his way of saying “thank you.”
 

Paul talked about how the stinging, sharp pain on his penis came and went for a long period.

Well yeh because the tumour was on the side of my penis and it was getting larger and of course… again it’s going to sound crazy but I went through a lot of pain, all them, well 18 months or more.

I don’t know what’s the best way to explain it? Like a stinging pain, like a sharp pain, but it wasn’t there all the time. You know some days there was nothing, no pain at all then other times it would start up again.
 

Paul couldn't bring himself to seek help; he just kept putting it off, using topical creams and hoping it would go away.

Well as I say, I’m a very private person and I’ve had other illnesses, serious ones, in my lifetime and I kind of tended to... I just couldn’t bring myself to tell anyone, or to go and seek help, you know, I know I should have done, especially in the early stages because I obviously wouldn’t have had to have such drastic surgery but, that’s like on reflection you know you um, that’s looking at it in hindsight isn’t it so...

I just kept putting it off and I was using all these different creams just in the hope that it would go away but obviously it didn’t.
 

Paul was devastated when he heard he had cancer, thinking that it was a death sentence, although his consultant tried to reassure him and explain that it wasn't.

When a consultant sits down with you and tells you you’ve got cancer it’s like well it’s like a death sentence. It’s I was just devastated, even though I had a kind of idea anyway it doesn’t stop that initial, because when I did go to the other local to have that third operation, the reconstruction surgery that was the first thing the consultant asked me. He said, “Did they tell you at the other hospital that it is cancer?” I said, “Yes, they did yeh,” but it’s hard to explain it unless a person’s experienced it. It’s just devastating when you’re told you’ve got cancer but then like that consultant surgeon, the one that done the reconstruction surgery, he said, “Years ago when you told people about cancer it was a death sentence.” He said, “That’s not so today,” he said because they’ve leaps and bounds haven’t they with research so, but it still doesn’t stop that initial shock when they tell you like.

Paul was left stunned after his consultant drew diagrams showing what the surgery would do to him.

Oh well the last consultant urologist, the one that done the surgery, when he examined me the very first time, he just like got a sheet of paper and started drawing diagrams of the surgery what he got to perform. And that was all that was told, that was all that was told to me, and that’s why I’ll never forget that evening actually, I was so stunned, shocked when I saw the drawings of what he’s was going to have to do, it, it’s just, it’s indescribable really, it’s just horrendous. And that was all that was told to me really.

Paul was left stunned after his consultant drew diagrams showing what the surgery would do to him.

No he was just like straight forward. He came, he didn’t you know, he just come straight out with it like I suppose they think ‘well there’s no point in beating around the bush’ and I mean like, when he done the drawings, the diagrams of the surgery what he was going to have to perform, I don’t know how I just didn’t die in the chair there with shock because, and I mean I was 59 then and then I had that last big operation on February 23rd 2010 and I was to be sixty in the April. Well in the November of 2009 I really truly didn’t think I’d see my 60th birthday so I was in a hell of a state to be honest with you. And I mean when I go down the surgery now, the doctors down there if they see me they always keep saying to me how well I look considering when they saw me that time in October, I was in a, I was just in a really bad state.

Paul was told was that he would lead a normal sex life and after hospital appointments has many questions but feels that he cannot ask them because his consultant is so busy.

The consultant surgeon said like about the reconstruction surgery and then he said, “I’ve already done a few of these operations and the men I’ve seen after have been ok” but then he said to me, he said “you should be able to lead a normal sex life” so I don’t know whether that was false hope or, but that was really all I was told, I wasn’t really told. I mean you know perhaps it’s my fault where, when I do receive like even now when I go and see this consultant surgeon I suppose I should really be asking him questions of the future and what not but you tend to think ‘well he’s such a busy person’ you don’t like to hold them up, so once he’s examined me he says “oh everything looks ok at the moment” I’m happy then and I just, when I know I’ve come out of there again and there’s questions I should have asked but I don’t like as though I would feel as though I’m holding him up you know because you can imagine the amount of patients he’s got to see, so.

Paul broke down whilst on the phone to a female friend and revealed his problem: she pushed him to seek help.

How did you go about telling your friend?

Oh well. [Name] had – oh sorry – um she phoned, because she phones me regular like and I broke down on the phone because I’m quite an emotional person anyway and then she asked me what was wrong and then I said, “Well I can’t really tell you.” I said, “It’s too embarrassing,” and then [Name] said, “We’ve been friends for such a long time [Name], it doesn’t matter what it is, tell – you must tell me.” And when I said about I said, “Oh, it’s down below like,” she said, “Look I’ve had three children” you know, “don’t be embarrassed, I’m your friend.” So then I told her that I said, “I’ve got a massive tumour on my penis” and that’s more or less when she came round to my house and more or less dragged me down to the GP. She really pushed me, you know and I’ll always be grateful to her for that. I mean that’s what you call a real friend. And she was – oh God the amount of appointments I’ve had at different hospitals she was always there for me so you know – and her husband [name] he didn’t mind because I’m close member of the family, close with the family anyway so...Or even when I told her she kind of knew, she said, “You’re not going to go anywhere about this are you” and I said, “Well no,” and that’s when she really pushed me and said more or less dragged me down to the GP, like you know, it went from there then.
 

Paul felt embarrassed explaining his treatment to his brothers when their wives were present.

Well yeh, yeh, the one brother he you know he said, ”What kind of surgery have you had to have?” I told him then that I’ve had to have reconstruction surgery I just told him that, well even trying to tell, to explain to my brothers was difficult because, well for one thing their wives were sat next to them but I mean more or less from day one I, that might have been what stopped me from talking to people about, because I just felt it was so embarrassing that I feel ashamed about it. But I’ve been told that I shouldn’t be thinking like that.

Paul was given an epidural into his spine to paralyse him from the top of his chest to the bottom of his toes; it began to wear off after 8 hours.

Now, they didn’t give me a local and they didn’t give me a general and I’ve never been able to find out why but they gave me an epidural, into my spine and then from the top of your chest to the bottom of your toes you’re totally paralysed which I think now it must have been because of the kind of surgery I was going to have and where it was and I think I was down in theatre about two and a half hours. They gave me a sedative to try and get me off to go to sleep but I was wide awake through all the surgery, with this epidural you can’t feel anything anyway because it was about must have been eight or nine hours after the surgery when I started to feel a little bit of tingling in my toes and then it started to, because you’re completely paralysed but I don’t know why I was given an epidural.

To be honest I can’t remember too much about it... think initially at the time when I come up out of theatre I think I seemed more concerned that I couldn’t move my limbs you know and like I say it took about eight or nine hours for all that to wear off and then but for nearly a week you’re in bed and you have to have a bag for your water.
 

Now that he felt that most of his manhood has been taken away, Paul said he wouldn't have the confidence to ask a lady out.

Well it’s you know … ok I’m what now? I’m sixty one, I’ve still got feelings. Before the surgery I thought like kind of after the surgery if they’d got all the cancer and things work out I thought ‘well, I should really start going out more and perhaps find myself a lady friend’.

But now because of the surgery what I’ve had I could never bring myself to say you know asking a lady out simply because I feel like most of my manhood’s been taken away like. You know some people think that when you start to get on in years you, we’re all human beings and we’ve all got feelings and, so, I wouldn’t have the confidence now to ask a lady out.

How about the effect that the operation and the illness – has it had any impact on your self-esteem and confidence?

Very much so, yes. I mean you probably haven’t picked up on it but just coming here today to talk to you really, really nervous apprehensive. But I mean like I was in August 14th I was at a wedding, one of my nephews you know, got married and after the wedding was over like in the meal I just sat away on my own, I didn’t feel as though I could mingle with people. It was only then like that my closest friends come over to sit with me like you know. So, yeh my confidence and yeh, that’s gone. Well how can I put it in a way having said that I think that most of my life I’ve always been a kind of an introvert, not an extrovert but this has made it even more difficult.
 

The first time Paul saw himself in the bathroom mirror after his operation, he was very shocked by how much had been taken away.

The first time they would let you go to the bathroom to have bath – a shower, sorry – because for the first three or four days they wouldn’t let you have a shower like. But when I went into the bathroom and saw myself in the mirror well I nearly died of shock. You know when you see that there’s hardly anything left, that’s...

So did they remove more than you expected them to remove?

Yeh.
 

Paul sees the consultant urologist every three months. At his last visit he had a cystoscopy to check to see if the cancer had spread to his bladder.

I have to see this consultant urologist every three months and his oh and he said, “At the moment everything looks healthy” the surgery, he said he’s really pleased with the – the reconstruction surgery –because this is a new thing like and I have to see him like I say every three months and August 5th this year I had to go in and have cystoscopy and what that was to check whether the cancer had spread to my bladder and thank God like he said, “Your bladder’s fine” he said “the only one thing is your prostate is a little enlarged” he said “but once men get into their 60s that’s quite normal” and he said “it’s nothing to worry about at the moment” but the good news was that it hasn’t spread to my bladder and he said when I see him every three months he said each time he’s told me “everything looks fine at the moment – still looks healthy” so, but he said I’d have to see him up to about at least five years.

Did you have any checks to see if the cancer had spread to your lymph glands at all?

Oh yes this consultant surgeon that I see every three months he, that’s the first thing he does as well, he checks my lymph glands and he said, “There’s no sign of any lumps” he said “the first sign of any lumps we’d have to operate to remove them straight away” he said “because once the cancer gets into your lymph glands it is absolutely rapid through the body.” So and that’s another thing, so when he tells me that everything looks fine at the moment and he said, “There’s no sign of any lumps in your lymph glands” he said so, and he’s done that more or less every three months when I’ve seen him so….
 

It was three months before Paul regained some degree of mobility and 18 months later his walking is still restricted.

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…

Paul can wee standing up but prefers to use a toilet cubicle than a urinal when in public as he finds this less embarrassing.

Oh yes, yeh. I can give you the perfect example, when I was at my nephew’s wedding and I went to the toilet and some of the chaps came in I had to try and find a cubicle because I didn’t want to, you know where normal men can just go to a urinal and wee, I can’t I have to, because it’s a struggle to try and find what’s left, I couldn’t just stand at a urinal you know so I would sooner hide myself away into a cubicle. So…

I can still like stand there now and urinate, but I did tell the consultant that there are times there that instead of just a normal flow sometimes it’s spraying and that was why he wanted to check my bladder. But I also had to have four tubes up inside me, this is before the camera, to, he said in the hope to stretch it, to help when you go to urinate that it you know. It, it hasn’t really, it hasn’t made much difference but at least I can still kind of stand there like any normal man and urinate, it’s just that if I’m out in public places like I gave you an example of the wedding I went to. Because, you would feel like when you’re struggling to try and find yourself, to urinate, you know you think all the guys are looking at you and thinking oh is, you know, ‘what’s the matter with him’ kind of thing. That was why I hid myself away in a cubicle. Just out of sheer embarrassment.