Would you have liked something specifically for men?

I didn’t really- I don’t know how to put this to you, just me going in and getting it done that was enough for me. Do you know what I mean?

Right. Yes. You felt you were in good hands, and you didn’t feel like you needed-

Aye.

– like you didn’t feel as though you needed any more information? Or you were quite happy with what you’d got?

Aye. Mhmm.

So you didn’t go-

Satisfied with what I got aye.

Right. So you didn’t go searching the internet or-?

No I just-

Did your daughter do that?

[Name of daughter] done it yeah. She was on- she knew right away, she could tell you things and that you know.

Right. And did you ask (overtalking) – did you ask her for information?

She would just tell us without me asking, you know. Dad thi and dad tha, you know.

And was she- were you quite happy to hear her what she was telling you?

Aye, mhmm.

So you were interested in what you were hearing?

Well aye I was interested yeah, aye. I can’t really explain it to you. You know. Know, eh, no honest to God, I can’t- I don’t know how- [name of daughter] talked to me and that- it’s that long ago you know. it’s- aye I would, was interested to listen to her aye.

I think [name of wife] was more interested in it than me, actually. I think she was more interested in it than me.

Did you just want to get on with it?

Correct and get it done and over and that was it. You know.

At the time, what you were going for your regular appointments, you know, when you were given your diagnosis and afterwards for the follow up tests, did you give, did you feel that you were given enough information?

I actually think I felt I got too much information, you know? I would have preferred to have just got on with it and didn’t tell me quite so much, but you’ve got to know everything, you know? And my neighbour [name of neighbour], too, he’s the same – you know, they almost blind you with science. I think they tell you too much, quite frankly. Maybe that’s just coz I’m a male. I mean, I was quite happy to have my anaesthetic and just go into that theatre and not know anything about it until it was all over, you know? But no, they tell you everything and I would have been quite happy with less information, quite frankly – just get on with it, make me better, you know? That’s how I felt. That’s a male thing, maybe. It could be, you know?

Did they give you information to read while you were in hospital?

They gave me information to read while I was in hospital, but in hospital, you see, you don’t read all this information. It is only when you go home, then. I put it back I put it on the table. My wife, she was the one that read for me.

Right.

Was reading for me and telling me this, this, this and I don’t want to see all these booklets, all these books, you see? I don’t want to go on that feeling again that I got cancer.

Ok. So you didn’t, your wife read up a lot?

Yes

And you just, she gave you the information as you wanted it?

Yes. I can read, but I don’t like to.

You don’t like to read about cancer?

No.

Just in general?

Just in general, because I don’t want to feel bad, the same way, you see?

So the information that they gave you at the time, when you were in with the consultant and he told you you had breast cancer, you said that, did you get information then? You were given leaflets?

Leaflets, yeah, they gave leaflets, yes.

But you didn’t want to read them?

No, because I knew I have cancer now, so I said my wife to read it for me and tell me what’s going on, yeah.

Ok so do you feel you got enough information from the hospital?

Yeah. Yeah. Yeah.

Does your wife think that she got enough information?

Yes. Yes. Yes.

Was it just leaflets that you were given or?

No, leaflets as well as the call to the breast cancer nurse yeah, she spoke to us in the office. Yes.

Ok did you see her with the consultant?

With the consultant, but when the consultant was, he went to see other people, then we were with, nearly one hour with the breast cancer nurse. She briefed us on what’s going on and what will happen and how it will work from now how the treatment will go.

Did you really rely on [wife] to give you information?

Yeah.

Do you think she searched for more information than you did?

Oh, she did, she did.

Was it because you didn’t want the information orwhy did she do it? Just keep itdid you not want to know too much?

No.

Why was that?

Wellin thewell, when me mother had it, II found it I don’t know what it were. JustI didn’t like it. I didn’t like it.

You just do not know which way to turn because like I say, there’s not a lot of information. Only small booklets. If they brought summat outto let you know, like I say, you’ve got to go to the doctor if you’ve got owt like that, cos it’s no joke.

What sort of questions did you have? Can you remember?

Well, why, why, why? Why has it happened to me? Because II look after meself. Well, my wife helps me, but I look after meself as much as I possibly can. Me body. But I were really, really mad because I used to look after meself as much as I possibly could, but it were reallylet’s put it this way. It were like destroying, you know, I were really destroyed with it because I’d never seen it before and never knew it happened to me, personally. Butit happened and that were it, and I had to really getscrape meself together and get things going.

Did you feel like you had access to all of the information that you wanted and needed at various stages? How, how did you find that?

Well, firstly, I knew, obviously, that men could get breast cancer, so I knew there was information out there – and of course, the first thing you do is Google it, and you instantly find there’s very little actually out there pertaining to men. On the main breast cancer sites, you know, on some of them you’re lucky to get a paragraph of text pertaining specifically to men, you know, with breast cancer. And it’s not very helpful, because you’re sort of guided towards the experiences of women. One of the pamphlets I had was instructing me where to go to get a new bra fitted – which I thought perhaps that wasn’t me, you know? And you should really have pertinent information. I work as a graphic designer in the health industry, and I know that I wanted specific male-orientated information. Just to do with males. I didn’t want to know about what women felt, or had, or whatever. I needed support myself. And the more I looked into it, I realised that there was so little out there. You may get a glancing bit of text in the websites, or whatever you’re looking at, but it’s certainly not as covered in any shape or form as female. And they don’t write it in a non-gender way, so that, you know, you’re not talking about a patient with breast cance – it’s always a woman with breast cance – and that, I feel, they could easily address the situation by making it non-gender-specific in the areas that are common to male and female. I mean, it is the same disease, it is treated exactly the same way, but why is there no dual treatment in the sort of information that you get? That was – that concerned me a bit.

That would actually have the dual function of making women aware, as they were reading about their own treatment, that men could…?

Exactly, yeah, sure. I mean, women – I’ve spoken to a lot of women, and I’ve said, I’ve had breast cancer and, Wow, you know, I didn’t know that could happen They just don’t see it. And men certainly don’t look at breasts as breasts – their own breasts, as breasts. So it was interesting that there was very little information out there. I had one specific brochure from the breast care nurse that was for men, written all the way through, just for men.

And was that something that was written locally, within your hospital, or by one of the breast cancer organisations? Breast Cancer Campaign or something?

No – no, no – I can’t remember who wrote it, but it was a specific breast cancer – it was, you know, about 50 pages long, had a lot of quotations from men. Very helpful reflective reading as well, to go back to it and read it again, to see if you’d missed anything in your sort of treatment or whatever. You tend to do that, I think to make sure that you are up-to-date with everything.

So that turned out to actually be potentially the most useful source of information for you.

I mean, literally – you know, I’ve got to say it – the information I had from the hospital was useless. Absolutely useless. Cos it was all female-orientated.

And how does that make you feel, as a man?

Well, as a man – it was more, not as a man, it was a male patient.

Sorry, that’s what I meant, as a male patient.

Well, I fe

What didwhat information did you get when you were diagnosed?

I got that information, and also as I said, I had a fantastic breast care nurse, Macmillan nurse allocated with me and I still see her as I said, but she goesshe went through everything with me. She was the one that got me to go on this fashion show because she’s got a friend that works down there, so no, I mean, it’s not justI don’t think, how can you put it? They’ve gone out of they’re way so that when a man’s diagnosed with breast cancer, he can get this, he gets this booklet given to him but the one thing that gets me is, okay I didn’t know about it, didn’t know about mencould have it, and then I get it, I’m given this book, you’re reading through it and all this business, but my point is now, why can’t these leaflets have men and women with breast cancer going through this?

So have one generic leaflet sort of thing?

One leaflet. It must be easy enough to put men on there. You’ve only got toit’s only a three-letter word, isn’t it? it’s true, though, isn’t it? And youget the odd picture of a man on there, but you’re only adding in one three-letter word and that one three-letter word could save thousands, if not millions of lives.

Does it mention men at all in this?

No. I was only talking to the breast nurse a couple of days ago and I said in the information pack that they sent, they said that for the operation I should bring a soft bra with me and, you know, I realised then that it was geared to women and they hadn’t really got round toso I had to sort of temper the information but now I think they are getting there with all the information that’s available.

So at the time you weren’t given anything specific for men with breast cancer?

No.

It was just general leaflets that anyone would get?

Yeah, you had to read in, this is also men, but as I say, once it said soft br I thought well, I’ve got to be careful, justI can read it but, you know,..

And again, just going back to what you were saying before about the other information for men with breast cancer, or the lack of it – did that have diagrams in?

All women!

All women.

You’d think they’d make them so they’re gender non-specific, but no, it’s all women. And they would have little clauses, like, pertaining to women, which had no relevance to men, which I thought, You could rewrite this so simply

Yeah. So what sorts of things might they say?

Whereas it was… I’m trying to think now what it was. There were certain instances where I thought, well, yeah, they’re talking about women. You may feel a bit weep. And at no stage did I feel weepy, surprisingly. But perhaps the hormonal thing, for women, was kicking in at that time, that I didn’t experience. So, I remember the weepy bit. I can’t think of anything else offhand. But there were certain things that were written down that I thought, Well, they don’t pertain to me at all But that was a general overview, as well, all the literature.

Well, I’m working with the breast care nurse, now. We’ve had serial photographs of me before the operation, a month after – a week after the operation, a month after, three months, and now at six months, showing the stages with the scar tissue in a clinical sense. So we’re going to compile them, so if men want to see what their procedure is, then, you know, they can be shown. Cos literally, if you Google the words male mastectom, there are very few what I class as good instructional images that give you an idea of what you’re going to look like – some of them quite horrendous, and have no bearing on 90 per cent, probably, of the surgery that occurs. So, you know, I personally felt that I was in a position where I could have photographs taken of me – well, clinical photographs taken of me at various intervals. So that’s what we’re going to do. And hopefully rearrange some of the literature to suit, you know, both male and female.

And from the time they discharged me from the hospital, I was very aware that all the leaflets and stuff they had given me, the physiotherapist had given me lots of leaflets that had encouraged me to move my arm and to get the mobility back in this arm and re- everything, that was written in these leaflets was for women. And I had them, they had given me them. And I remember thinking that, this is very odd, you know. But I could take what was important or what was useful for me, from these leaflets.

It must have been difficult to read that and feel they so much weren’t written for you, in many ways?

Yes it was. And that was one thing I immediately- I remember writing immediately, I said, this has to change, and I’m going to be the one that would change it. Because these leaflets are absolutely no use for me. And, no they were of some use. But they would be no use for the majority of men who got breast cancer, because the majority of men who get breast cancer are elderly men, with elderly partners of wives, or whoever was looking after them, and they would not allow them to read- I didn’t think they would have allowed them to read the leaflets. The women may have read them first and decided well, this is not suitable material for a man, and they would be discarded and thrown away.

So you think the wives of these older men would’ve read those leaflets and put them-?

Yeah. They would’ve put them to the side, because they’re of a generation where, breasts for women are ooh, you don’t talk about that. And you don’t talk about breast cancer, and you definitely don’t talk about the effects of breast cancer and what would happen to you, in terms of everything to do with sexuality and things, which was written for women.

So were the leaflets quite detailed about those-

Yes, they were.

And did they acknowledge that at all as they were giving it to you, did they show any awareness of the fact that the leaflets were inappropriate in many ways?

Well no, and- no they didn’t. It was only after the fact, that I began to think that it was really quite inappropriate to give me this. And not- although I did use to word careles sometimes, they may not have been careless because that was the only thing they gave- they could give me. There was nothing else they could give me. But I was determined that, it was most inappropriate, it was carelessly given to me, and things had to change. And I needed my- bit of a crusade to do that.

By that time of course I had found out that eighty percent of the women who get breast cancer were over fifty, and looked nothing like this twenty year old gorgeous looking physiotherapist, prancing about in these pictures. And I thought to myself well that’s almost inappropriate to give to women, because you want it to be real, and it would be much more real if they had used a real breast cancer patient, in the majority age group of the women who get it, rather than a nice looking young woman (laughs) ha! So, I was annoyed at that, and they told me in this leaflet that, I shouldn’t for example, do the washing up. They told me that I would be able to do up a back fastening bra in three weeks time, if I continued to do these exercises. They were just full of all these things (laughing) to do with women, which were- they told me I should brush my hair a hundred times each evening, because the exercise of doing that was useful for the mobility of the arm. But if they had given this leaflet to men, elderly men, many of whom are bald, then the usefulness of telling them to do that-

So the literature that you came across when you went back in when you were diagnosed for the second time

In 2008? Yeah
Yes, you felt that was much more sensitively written?

It was actuallyit was not gender-specific and it wasn’t even sexual orientation-specific. Which was quite interesting, which seemed a bit odd because I thought you’re either men or women but obviously they felt that they were trying to encompass everybody so nobody actually felt that perhaps they were left out of it. And the booklet actually had experiences from patients and with a little interview from the man and an interview from his partner you know, whoever that might be. I did actually read it because having been there before, I felt I’ve been here before’, you know, so it was not a big problem, I was just interested in that.

So that’s- that’s the way, how it all happens, and that’s why I say you know, went to the pub when I’d been diagnosed, I said right lads, task for tonight is to feel your nipple. They said, What do you mean I explained it and one or two guys said, Ooh, oo. I said when you get home, have a quiet feel, I mean I hope there’s nobody her, I said cause it’s a very low percentage of people have it, but if I stop one more person having a problem I’ve done you know, I’ve done my job shall we sa. So it’s quite interesting. And how one of the lads have said, it was a shock, again one lad said I didn’t know you could get breast cancer. I said well, you know, we’re only slightly different from women you know.

There is a dearth of information about male [breast cancer], and it sort of infers that it is solely a female problem, yes I mean. I suppose if you go back ten years probably yeah that was true, but now it isn’t true and I thinkit… I suppose, again having access to the internet, and I alwaysI have a theory, it’s out there somewhere, it may take you a few minutes to find it, or a few hours to find it, but you can find websites about it. But its not- when you put in, you type in breast cancer and the first website that comes up won’t necessarily refer to- it can happen in men. Again, because I think the diagnosis by men is- I mean I can’t speak for every man but the majority of men I think probably don’t examine their breasts. I never did, you know, I’m not afraid to admit it. One of the lads in the pub said, Well, the gays’ll find it quick enough won’t they [Laughing] But that’s- slightly homophobic but, okay. But yeah, I mean it’s probably a comment, you know that- as I say, when I see people on- stripped off, I always have a look now, I mean normally I would never look. Cause one day I might say, Hey hang on, I don’t want to panic you but-you know. But, yes it’s like everything else isn’t it, if you’re not aware of what to look for you don’t know- as Rumsfelt said, We don’t know what we don’t know’, which is very true. So, yeah.

Did you use the internet a lot to look for information, through your treatment or-?

Not through my treatment no, I looked at it initially but sort of. Cause there’s so limited information anyway so, it isn’t really a great help but.

Can I take you back to the, your diagnosis? What sort of information were you given at the time?

Very little. Very little, from the doctor’s point of view because I would say at that particular time that I changed doctors since, they were fairly young and I was told that, you know, some of the younger doctors are quite up to date if that’s the right word, you know, as to what cancer in men, it wasn’t heard of as such it was going on, they know it was but not to the same thing I was in [name of city] itself, even today when I get those tablets they ask me over the counter who are they for Yeah, just after it, I’ve been getting them for how many years and they still ask me, Who are they for They look at you, and even today I talk to members of the public or members of my friends and men, men don’t get tha. I says, I’m proof that they d, and I can show them, you know, that I can show you it, and I just lift it up and show them, not me body cos I did is so often but we don’t put people off but if they say you know oh loo, you know, some say yes, some say no, whatever, but the doctors at that time I would say particular ones because they were youngish doctors they weren’t up to date with a lot ofmaybe they’d read it and everything butas I say, it wasn’t till
You didn’t get any leaflets or any information specific to you?

No, not.

Did you get anything?

Pfffit was very limited what I did get. If I did it was from the hospital or from the cancer nurse who was excellent as well. She was very good.