Would you ever go to a support group with women?

Yes, why not? Yes, yes.

And was there not a group that you could have gone to?

I’ve never been to a group.

You haven’t? There wasn’t one in the hospital for breast cancer?

I don’t know.

No-one suggested it?

No, nobody.

Would you have liked to have gone?

Yes.

Why do you think no-one said?

I don’t know. Maybe they were only women there, so this might think, well might not mix with a woman – but nobody suggested to me.

But you would have been quite happy going?

Yes.

Now, I see at the back here there’s a breast cancer support group?

Yes.

Did you ever go?

I haven’t been, no, no.

Why not?

Not having the time really, because of hospital appointments. They are in the evening on a Wednesday, I think, but generally we’re doing things.

Would you have liked to have gone?

Yes, and in factI got the impression, though, that it was all ladies there. So…

Did that put you off at all or

It didn’t put me off, but I wanted to relate to men. My idea was for me to go along and try and encourage men to getand I’ve always been looking for a way of getting to get men to examine themselves.

Did the hospital ever say to you about support groups for you to go?

No. There was some leaflets for Macmillan, Cancer Bacup or something. Apart from that, no.

But you didn’t meet anyone else? So, like, the

No.

Would you have liked to?

If I could communicate with them then yes.

You would?

They said, did I want to talk but I would have had to find it for myself.

Breast cancer care, they do a peer support, but it’s telephone, I think.

By phone

Did you get a chance to talk to another man?

No.

No?

No.

Would you have liked to?

At the beginning yes.

Why at the beginning?

Before the operation, to ask about the operation.

To get more information?

I wanted to know what the scar would look like

When you went to the hospital, did the nurse ever offer you a chance to go to any support groups?

No, I don’t think so. I wouldn’t have went to a support group, anyway – I don’t think I need support.

Why not?

Because I’m strong enough to do it on my own.

You don’t think sharing ideas or symptoms?

Yes, but I have to share ideas and symptoms with any males, and there’s very few of them around.

So if she said, I’ve got a male support group

Mm, yes.

Would you have been interested in going to that?

I probably would have went to see that.

What do you think the differences would be between a women’s group and a men’s group?

Women, it’s much more intense – it’s a tremendous problem for a female, having breast problems. For a male, it doesn’t bother me at all, not in the slightest – not interested.

Do you think you’d have felt you were intruding a wee bit?

To females? Yeah, I would probably feel I was intruding a little bit. I would probably, if I was in a female group, they probably wouldn’t be the same. I would probably suppress their dialogue.

Because, I suppose you’ve had breast cancer, just like they’ve had breast cancer.

Yeah, but my breasts don’t mean anything to me at all.

They don’t?

No, nothing at all.

So it sounds as though the sort of support you were getting, from all these different places, you didn’t feel that you had to go to a support group with other people that have experienced breast cancer?

No.

No?

If somebody had says to me come up and went like that, Look there’s a thingmy for breast cancer, people that’s had breast cancer, it’s on a Tuesday night, would you like to go along I’d a went along then, if I’d a been invited but I wouldn’t a pushed my way into it, you know what I mean? Or if, or if there’d been an advert in the paper saying come along’, I might a done it. But I wouldn’t have, I wouldn’t have phoned up places to see if there was a meeting somewhere, I wouldn’t have done that you know?

Why not?

Well, I can’t answer that, I just wouldn’t have done it. You know.

Is it because maybe it would have been women or-?

Oh no, not at all, no, no. Just- I don’t think me being there would have made it any more important or whatever, you know or just made any difference you know.

To you?

Or to anybody else that was there maybe you know.

Ah, yeah, noas I say, I’m going though how it affected me, how it, mentally, affected me, but I think if Iother cancer sufferers, if they sat andif they wanted to discuss it, as I was saying, this disease tends toyou meet so many other people that are going through it, ladies, not so much men, but you meet a lot of ladies that are going through it, and as I say, that brings me back to whereI feel as though I can discuss things easier, more comfortably with the ladies than I can with like a gentleman that’s sat there. If it’s a gentleman going through breast cancer, that’s a different issue, then I’d like to talk to him, but no, then you’ve gotokay you’ve got the other cancers as well but then you feelit’s like that lady I was mentioning that suffered breast cancer then, now going through bone cancer, a secondary cancer, I really feel for her. I praise her and I look up to her because she’s so strong, she’s strong-minded and she’sas I say, she’s not after the sympathy, she’s after the support, and we all give her the support, even though when we hear her stories, we’re sobbing, we’ve got tears all running down our eyes but I never, ever feel uncomfortable when I’m in their presence. I can sit, I can cry with them, I could go to the meeting orwith the group that I attend once a month with all the ladies, there’s no other man that goes, I’m the only gentleman there. But I can sit with all those ladies and I can tell my stories and listen to their stories and I can have tears roll down my eyes, and there’s no embarrassment there whatsoever.

Oh yeah. I mean everybody in that group-

Men and women.

Men and women. Everybody were all supporting one another, and when you were doing your individual things, you know, everybody’ll come out and watching and encourage you and things like that. And that is the beauty of it, is that the people, I suspect not only with breast cancer, but it’s probably the same with all cancers, the people that you come into contact with, have been there, done that, and are going through the same traumas and the same feelings as what you’re going through, and can relate to those feelings. Where, as I say, a lot of people that haven’t had it, obviously sympathise and what not, but you know unless you’ve been there, then obviously it’s a different ball game, you know so-.

I mean you talked about the [Breast Cancer Care] fashion show and the camaraderie there, but do you think in the wider sort of breast cancer group that that’s true between men and women, do you think that-?

I think between the- yes I think everybody-

So did you get any offer of support, you know going to a support group or anything like that?

Well yeah, I mean this is it, I mean I turned I said about the Lodge, it’s attached to the hospital and I mean it is strictly you know for breast cancer, and, yeah I mean they, they sort of try and organise things, and you go, I mean cos they organised it I went up and had a couple of massages and that after the operation. So, and they’re there again if you want to you can always go in and see them, but as I say, I, I try not to go too often because I sort of, I don’t know, I’m a bit self conscious about asking people, from the point of view that I think oh I’m being a nuisance, so rather than being a nuisance I don’t ask, and invariably it goes away, whatever it is (laugh).

All my friends and relations, they allsupport. And I say, you know, we joined a cancer sort of [name of group] they call it and we go there once every month and it’s all ladies as you probably know that’s had breast cancer. There’s maybe two men that go there and we just join in and do what we can. I call it payback.

Is it a support group?

Yes.

It is?

They have their ownmost of the ladies were in the infirmary. They have paid and bought for that room, all the facilities in that room, and also how they’ve paid for the doctor to go in to find out things, pay him on a basis. No, it’s very good, it’s very successful, yeah.

And who told you about that group?

Do you know, I don’t know how I got into that. Maybe one of the ladies down at the hospital down at [name of hospital] that probably told me, and it’s justit’s once every month and we just all go and meet and express everything, what’s happened and try andevents going to raise money all the time, which we do do, catwalks, fashion shows which I’ve done two, third one next year which I enjoy, you know? And buy tickets and it all raises funds for what we think’s a more worthy cause.

Do you talk quite freely within that group about these sort of things?

Not particularly. it’s not that type of a thing. Unless it comes up that somebody in the group has had something like a husband or they know people that’s had something like that, it’s mainly for fund-raising, the group that we’re in. Mainly for fund-raising which they do, you know, they have garden parties, they have jewellery shows, fashion shows, they have people coming to the houses.

I talked to a lot of interesting people, a lot of interesting, and the experiences that they’d had. I probably was the fittest of anybody who’s ever in the place you know the women were, well there was suff you could tell they were suffering a bit. And one woman who organised a Pink Breast Cancer Club, I’m not sure what happened to her in the end… I’m not sure whether she’s still with us or not.

So is that a sort of support group or a fund raising group?

It was a fund raising group.

Did you ever think about looking for a support group of any, of any description?

Well I did join a support group for a period, sort of just, I’ve sort of let it drift a bit.

So was that like really, was that for people with breast cancer specifically?

Yes, yeah. They’d organised fund raising do in the, in the local hotels, and, that was, that was their main day, and then they’d have adays out, but we never went on any of those. And we would go to the fund raising do and that was about it. And I would have cos I was entitled to a, I had a pedicureI used to have
Did you (laugh)

Yes.

Did you enjoy that?

Yes.

And so when you went to that support group were you the only man there?

Eh, well cos the women had their partners –

Ok.

nd that was it so, – but yes I was the only manyes.

I don’t suppose if it was a lot of couples going along it then, people would, you wouldn’t necessarily know who was, who had breast cancer and who was a partner of somebody with breast cancer?

Correct. Yes.

So, but you say you don’t keep in, particularly keep in touch with that group anymore now.

No, no.

And you were telling me earlier that you still met up sometimes with your group of Herceptin ladies.

The Herceptin ladies, yeah. Yes that started because Iran a sort of discussion group, to help out a bit of research that was going on at the hospital. And so I had a focus group effectively. And so we just stayed in touch with each other cause we also enjoyed meeting up.

So that was something that arose out of that, rather than being so scheduled for appointments for your Herceptin, at similar times to the same group of women-

One of the women was having Herceptin about the same time as me. But of course although the initial treatment was over an extended period of a number of hours, subsequently it became a quick thing and I had it in about half an hour and then I could go. So the chances of bumping into people at random were diminished. I think one of the women that I met up with, who strangely enough is not someone who I’m so in touch with now. She hasn’t been to the last couple of meetings. I did encounter in the day ward. But the others were put together by people that were doing research. So I’m not sure, I think it was just a convenience sample, I’m not sure they had anything in partic- because I remember we were all at different stages, we’d either finished it or just starting it or some had some characteristics, some- one I remember had another – was in a trial for another Herceptin type drug. Because her cancer had another sort of characteristic that could be targeted. And a whole range of ages, from, one who looks very young but she has an eighteen year old son I think, someone who works for Social Services in the city, but looks remarkably young, so she looks in her late thirties. I think she might be just into her forties. To someone who was in her seventies. Perhaps two women who were in their seventies. One of whom had had cancer twice separated by twenty years. So it was quite a spectrum. Everybody was very, very enthusiastic about staying in touch. And I think some of them belonged to support groups and others didn’t. But they just- thought we all clicked you know, so it was just- that’s how it worked.

Nice when these things arise sort of quite spontaneously like that.

But I think I was saying to you that there are in this locality a lot of support networks [for women], none of which I’ve ever been invited to join. So there is the gender asymmetry and that stuff- and I suppose, I can imagine circumstances where perhaps I would quite like, would like to be part of some sort of support network. In fact I don’t. But I could imagine if I had’ve wanted to be, then I might have felt a bit sidelined, when I found out that all this activity was going on.

Another aspect, which I got involved with also is through my daughter was meeting a woman who, I would describe as a spiritual psychotherapist in a way. And she had formed various groups, she gave various teachings, and she had a group called Wise Women, and women- my daughter belonged to that, and the women gather and get- discuss all sorts of things, and began to trust each other enormously, and it becomes in a sense a support group. And this woman was just in the process of forming a man’s group for the first time, so I joined that. This is back in 96, and we worked with her for quite a few years, and then she decided she wanted to go in a slightly different direction, so we had to choose, should we disband, or shall we carry on, on our own? And we’ve carried on, on our own, so there are about eight of us, eight or nine, and we meet once a month, we do a certain ritual together, but mainly it’s for support and help and it’s most, most unusual group, it’s very powerful, we trust each other enormously. So we can tell each other anything, and that’s rather rare for men. We can open up our deepest worries, we can explore with each other, and we’re very supportive, so people- quite different sort of people, so that you get views from different angles about things, and I’ve noticed that all of us, over these years have grown in stature, in sort of confidence, you know in feeling comfortable in yourself. it’s been very, very exciting and very powerful thing to belong to. So that was yet another aspect I would say.

When we meet, we always drum to start with, we have drums and we do drumming for about five minutes and it’s [the musician] who usually leads us. We get into it, you know. So we arrive and we get into it, and we sort of try and cast away a bit, life, day, the worries and so on and get together. And we go through various things of that nature to get us together. We usually share a bit of information about what’s going on, and quite often something in that discussion or chat comes up and we fix on it and say Ah! Do you need some help there should we discuss it more We do hands on healing so if somebody’s who’s having a rough patch we’ll give them hands on healing, which I’ve encouraged. Not many of them are reiki people but most of them are interested in that. they’re very, I mean two of them are Shamani people and they’re very into all that thing, you know I’m probably the most amateur of them all in that way.

But these other people, all are still working, most of them are. And they really have to make an effort after a hard day’s work, to get to somebody’s house, to have the session, and they want to. it’s a commitment which I think reflects the fact that every one of us in one way or another has been helped by the group. We had- we once had an away weekend, we all went to Wales and we were there for, two nights. We borrowed the house of somebody’s sister who is herself in this sort of, type of thing and has gatherings and so on. And we had an extraordinary time there, which I think cemented the relationships between us. I think each one of us, at that time, had a major experience of you know, releasing something. And funnily enough we were talking about death. I remember that my experience there was that I was feeling pretty unhappy. I let all that out. And we talked about it a great deal, and out of that came this message, live in the now [laughs]. And we drummed it and we did everything. I mean it all sounds a bit funny talking about this but, it really works, it somehow works and when you’re really in it, you can have an impact on yourself. No doubt about it.

The nurse I’ve got, she is fantastic and I still see her now. Actually, I’m going tomorrow, soshe’s got a little group which she’s set up herself. She’s a Macmillan nurse and she raises a lot for the breast cancer charity but she’s got her own little set group which she started for young women with breast cancer, and she’s asked them if they would like me to go, and I’ve been invited along each month to go and sit down and discuss things with them. So I took the [Breast Cancer Care] fashion show DVD in for them and they were very impressed with that. They liked that.

Do you feel well supported with them? Do you feel you’re included in the group when you go?

Yeah, yeah. it’s funny because like I said, there’s a reunion. When I went in January, went to a reunion with six other ladies from the show that I was in and they laugh and joke with me because they like my sense of humour, so they alwaysthey come round and say that I’m one of the girls. They treat me as one of the girls, which is nice. I knowit’s nice where women can give you that banter and ifobviously you need a man that can take it. That doesn’t bother me. I like all the banter off the ladies. Actually, I have a better conversation with them than I do with the general Joe Public, but I’d likeI can sit down in a café and talk about this breast cancer for ages. it’s just something I like to do, but no it’sit’s a, how can I put it? Where the women are concerned, I always look at it as their disease but and I like it, it’s like supporting them as well even though I know I’m getting that support off of them, I don’t look at it that way. I look at itthere’s one lady, she’s got breast cancer and secondaries now. She’s going through bone cancer as well. She turns up and everyonewe all look up to her, praise her so much and yet, shewhen she starts talking about her issues, we’re all sitting in that room tears coming down our eyes. Emotionally breast cancer I think is just one of those types of diseases where it does, it seems to hit you here in your heart. I’ve changed me, in quite a few different ways. I feel I can give people more time and I’m a lot more considerate and kind don’t know why, but it just seems as though this has affected me in that way.

But I say, the thing that did annoy me was feeling alone. I mean, 40-odd thousand women, they’ve got support groups. Who do I go to? Nobody. You sit and ponder yourself.

Were you offered any support groups or networks?

Well, only this one man who’d been in touch with me, or I presume that’s the only other man in [area], I don’t know.

But you had asked to meet someone else, no-one offered you the chance?

Well, I knew they say this man in [city], and this was quite a long time after. Butit was, it was very worthwhile, going to [town] and having a couple of pints and having a word with him. It was very, very worthwhile.

What sort of things did you want to know? Did you just want to share your experience or

Share me experience and how you felt and how long it’d be before you felt reasonable again. He’d beenI think he said it was three or four years since he’d had his mastectomy, and he said oh, I’m just about getting over it no. I thought three years to go. But I still go to the hospital.

And did you consider going to any kind of cancer support group or has anything been offered?

Well, they did actually send me an invitation to one, but going by the actualthe seminar that I sort of gave them a little story to in 2005, it would have been all ladies who probablyI don’t think it bothered me too much but it was reallythere was an awful lot on the agenda about sort of constructive surgery and special brassieres and things and I think they may be felt inhibited and I didn’t know I had anything to offer. I said, were there any other men going and they said n. So, but one strange thing that came out of it was that I was able tothere was another lady who worked in our department developed breast cancer probably about eighteen months after I’d been through it, and she knew I’d been through it, and I was able to offer her a certain amount of support without embarrassment which I think she found quite helpful because if it’s somebody you know, it’s always a lot easier and you’re more inclined to believe them, I think.