Penile Cancer

I didn’t ring round all the family and tell everybody on ‘Day One’ but as I’ve mentioned already I’d two large parties planned therefore I was, I was meeting probably nearly two hundred friends, associates, relatives within the next week or two anyway, so it didn’t take long, if you only had to tell a couple and it was round immediately to everybody there was mixed reactions from people. Some people were almost in tears and very sorry, some people always know of somebody who’s had something and been cured and somebody else knows somebody who’s actually died and therefore [chuckles], you know, there was, there was sort of mixed reactions all round. But as I said we’d plenty of deflections taking place so we didn’t worry too much about it, but yes we didn’t put it on the Internet but we didn’t keep it a secret either.

At that point, after you had just been given the diagnosis, did you tell anybody else?

Yeah because …told the wife. Children, they knew. And then obviously it’s like ‘Chinese whispers’ then. Everybody starts to get to know. There was cases where I was… well it is a bad illness, when I was seriously ill and I got bladder cancer and it everything started to get out of out of all proportion then. There was people saying that I’d died with a massive heart attack, I had got bladder cancer, I was seriously ill. So really deep down it’s just what ‘Chinese whispers’ are. It gets from bad to worse and it snowballs into all out of proportion. But yeah the immediate family knew. Everybody...you know, which I think it’s only right for them to know. I don’t…I’m a person that never holds anything back. They want to know, I tell them. I don’t... I’ve got nothing to hide, you know. No that’s the situation I’m in, you know. I mean even the neighbours they say ‘well you’ve been to hospital Col’, all this ‘how are you?’ And I tell them the problem. I’m not embarrassed by it. Which I think is another thing that you shouldn’t be. More so I seem to be humorous about it. You know and they’ll say like if they ask me, I say ‘oh the pimple on my dick’s been sorted’ [laughs]. There’s no there’s no need to be remorseful and aggressed about it. And that’s the way to look at it. You’ve got to… and that sort of attitude, where you’ve got to go through life.
 

Did you tell anybody else apart from your family when you received the diagnosis?

No I’ve not told anybody. Only my nearest family. And the friends who I know I’ve just put it… it was …a problem to do with urinary problem, and left a window, a wide window. I haven’t gone into details with anybody other than my family.

What was your reasoning behind keeping it private?

Well initially I… I’m a person who is very… thinks very privately. I keep things and confidences are very important to me. And I… if I was told anything in confidence I would keep it in confidence. And it’s like I told my daughter and my granddaughter. They know all the details and they’ve kept it to themselves. Because it’s not something that you advertise, any medical problem, you… you don’t advertise… as such.

Can you remember how you disclosed your diagnosis to your family?

I disclosed my diagnosis originally over the phone and once I’d disclosed it naturally my daughter was very upset. And she had to ring off, ‘I’ll ring… ring you back Dad’. And she rung me back within the hour where we you know we… we’d more or less accepted it. I was upset in having to tell her and she was upset in getting the news. But then there was just like a pause for reality to kick in and then she rung me back. And we discussed things and then we met the following day. And thereafter she thinks positively, I also think positively.
 

I think for the glansectomy, the first one you know, I think I mentioned that a time or two to some of my friends but other than that I’ve not – I’ve told nobody about the removal. The only folks who know about that are the practice nurses down at the surgery, doctors and whatever, I mean I haven’t told my sister and she’s diplomatic enough not to ask me. She knows I’ve been whatever, yeh, but she never asks me to go into detail so… there we go. It’s my business, I don’t think it’s anybody else’s.

Are you happy with it being like that or would you prefer to have someone who you can talk about your emotions with?

No, I think you know, it’s my business and I don’t need, I don’t want to talk to anybody, friends or relations about it... it’s just there.

Well it’s a bit private isn’t it? And it’s a bit delicate. What do I say? Well you know I can’t go out and say to the mates “hey, I’ve just had my penis taken off” because they’d just take the mickey wouldn’t they? [chuckles] It’s my thoughts and my decision, I’m telling, I’ve told nobody. As I say there are folks who know, obviously the nurses and doctors. I’ll say this about the practice nurses down there, nobody laughed [chuckles].
 

How did you break it to your wife?

I basically just came home and told her and said, ‘He said it’s cancer.’ I suppose I broke it to her the way I was, I had the news broke to me [laughs]. It was quite upsetting and worrying at the time. But it was probably more worrying actually the second time when it came back, well it didn’t come back, when they, I went in for the second surgeries for the these biopsies. I think if you think it’s come back – you hear a lot of these stories about people that have leukaemia, they have all these treatments and they go into remission and they can live for 20 years and then it comes back again and that’s it they’ve got a fortnight and away they go. So I think it was more worrying when we thought it was coming back, and also being older it’s like you know [chuckles] that it’s the end of the line. But, touch wood [touches head]– still here! [laughs].

I think at the time because it’s like, the kids were only young at the time and it was the sort of constant worry of, you know will I survive it? How will life sort of carry on for my wife once I’ve gone? You, you think all the black stuff and those were the sort of the mental worries if you like. And they were quite strong at the start you know when you’re going through all the treatments, and the kids didn’t know anything about it either because I was going to see these doctors in the daytime when they were at school, all the treatments was set up in during the middle of the day so we could take the kids to school in the morning I’d have the treatments and we’d be there at the school gate in the afternoon to pick them up so. It was sort of shielding the kids from it and worrying about them and their future sort of thing.
 

At that point did anybody else know?

No. No it’s... it was.. I kept it up away from the kids because I didn’t want the kids have to suffer with any of that, any of the anxiety. I’ve been told off since but the... no they were fine, they were quite happy with it. They know their dad tells them when he… when they need to know and no more.

So did the… did they ask you any probing questions?

No I think my oldest son turned round and said, ‘Well you’ll have to tell us more about it’ and he’s never asked again. He’s… he wanted to know in case it happened to him but he’s never asked again so I’ve never bothered to volunteer the information.

Did you tell anybody else, outside the family?

Not until after the operation, until I’d got it all under control. And that’s when I felt free that I could talk to people about it. And obviously being a bloke when you’re going to a public loo you have a problem after the operation. So anybody says anything you tell them straight what it is and... anybody wants to take the mick, they shut up straight away. Because as soon as you mention the words ‘I’ve had a cancer operation’ they stop dead. So don’t be frightened of what anybody else thinks anyways, just get on with it.

So you’re quite open with people?

Yes I found it easier. All the time you’re trying to hide something it doesn’t work…it, you feel apprehensive, trying to hide something. If you bring it straight out into the open it’s fine. All of my friends now know exactly what the operation involved, what had... what has happened. Male and female. They all know exactly what it’s all about and they’re all there for me.
 

How did other people react generally when you told them that you had penile cancer?

Shocked. Shocked in the sense where they thought I meant prostate cancer and everybody I spoke to and explained to what it is had never heard of it. And obviously I explained to them that it was very rare. And they were they were shocked in other words, you know. The word, the actual word ‘cancer’, shocked everybody I think in a sense. It’s the actual saying that you’ve got cancer that’s the problem.
 

What were the general reaction when you told them what you had?

Disbelief I think off most of them. Especially the blokes who are then going they’re all a little bit ‘oh what the heck’s this? What’s going on here?’ And they’re...they’re all got a little bit un...uneasy about themselves. But I think most of them are...are quite comfortable now they...they know what it’s all about and how easy it is to overcome. And most of them are old boys now, they’re all in the ‘70s so obviously things are not working like they used to be for them as well as me.

Were you asked any awkward questions?

Not that… I can’t remember anybody ever asking me anything that I couldn’t answer.

And did you find people were very curious about it?

I found younger people curious. Anybody who… who probed when they were in their ‘20s. I think they wanted to know a lot more about than anybody else. So I just… I would just tell them what they asked and that’s the end of it. Never give them any more detail, just tell them what they asked. 
 

How did people generally react when you told them what your condition was?

Oh they were they were shocked and saddened and their general attitude was you know well you know we’re here for you if you know…helpful, understanding. There was no, there was no question of them not being otherwise.

Did they have any questions for you?

No I think generally they were quite …sort of… decent in by not being too…. they were not too keen to be too nosy about what was going on. They just understood that I had a problem that obviously I had to have an operation…. with it and they were they were just generally quite sympathetic.
 

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.

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].
 

Then as we got closer to operation day, obviously the, my family and people started to get a bit concerned, get a bit more worried, you know, and I don’t think I necessarily appreciated it at that time how worried some of them were, especially my children. I’d – I was trying hard to sort of keep them involved and let them know factually as much as possible because I thought that if I don’t tell them things, their, their imagination will work overtime and things will seem, will sound worse than they are. So it was keeping them involved, and then it was making sort of practical arrangements as well.

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.

As I say, there was all in the same position as you were. They… some knew… I was closer to some of the patients like the chap in the next bed asked me what I was in for and I said it was penile cancer and I’ve had it removed and…that was that was as far as it went you know. He didn’t enquire as to what the symptoms were. Nobody… nobody asked what the symptoms are or …so…therefore I suppose it it’s such a rare occurrence that nobody seems to bother really.