I think talking about my experience has all helped me as well to come to terms with it, and I have no qualms about telling anybody that I had cancer. And if anybody through any of the charities that I’m involved with, or organisations, feel that they want to talk to somebody, I’m willing. I know it’s not always possible to compare feelings because everybody is an individual and they’re different, but I know at the time when I was diagnosed I would have liked to have talked to somebody who had been through the same experience.

Is there anything else that you would say to other women who are going through this, you know how to

I think personally being in contact with somebody else that had gone through it was a huge help to me. Particularly finding somebody so young that it wasn’t something that was that rare. I’ve since found, and lots of people have spoken to me when they’ve had abnormal smears, and some people, two people I know have had cone biopsies, and it’s been great to be able to provide that support to them. I think it’s just being able to have a conversation. Books and information, it was helpful, but at the same time it was also quite scary because you couldn’t have that two way dialogue, it was all about how it could be, and the danger for me certainly was that I could take myself too far beyond it. And I think, yes, the most important thing that happened to me was being in contact with somebody who’d had a similar experience.

But more particularly a really close friend of mine called me up quite recently, in the last 2 years in fact, in the last year and a half, and said, "I found a lump, what do I do?" And I automatically said, "Well, you know, just go to your GP first of all, it probably will be nothing but just go", which he did, and he had exactly the same brush off as I did. And we’re talking, you know, 12 years down the road. You’d have thought that perhaps people might pay a little more attention now, but no, brush off came, but because he knew what I had gone through at that first brush off, he said, "No I’m not happy with this, please send me for tests". And thankfully he did go for tests because it did turn out to be testicular cancer. So, you know, even that one person learnt from what I had gone through in fighting to say I want that test.

You saved a life.

Well, yes possibly, but yeah it’s, today if somebody talks about it I’m happy to talk about it. I’ve found that a friend’s mum who’d had breast cancer, even though it was a completely different part of the body and it was a different generation, I was able at some stage to talk to her and say, "Well, you know, this is what I went through, I know it’s a bit different but, you know, if ever you want to talk about it you can". And she did and we developed a particular bond and it was really rather nice that she was able to discuss this with me because we had shared something in common.

And from that I’ve been so thankful with having this operation and the success of it that I joined the Ileostomy Association and I was a hospital visitor for quite a few years. And I found that very satisfying because I could just tell people who were going to have this operation’ I’ve got one. I’m like you now, but I can do this. I never said, I never told them any medical things about it, just the fact I’ve got one, everybody’s different and it might affect them in a different way, but with me I can go scuba-diving, I can go sailing and I go skiing. In fact my life is more full now than it was ever before. I’m probably fitter now than I was before because of what I’d had happen to me.

And for quite a few years I’ve been a, I’ve seen different people in hospital; I hope I can help them. Lots of people have changed their opinion of being, having this horrible operation, it isn’t as bad as you think it is, nowhere near as bad. You always think it’s going to be, you’re the only one’ why me? And, everybody gets that, but in the end you come through it and you’ve seen somebody who’s got it.

As opposed, you’re told by a medical person that, Oh yes, you will be OK’, and you think, well yes, you say that but you haven’t got it have you? But when somebody stands in front of you in a lovely, a little trouser suit with not a bulge showing anywhere, I mean that gives you a lot of confidence.

I definitely feel I can understand what people are going through but I don’t actually know anybody. I know of people who’ve had it in the past and I can sort of empathise with them now and didn’t realise what it was like, but I’m fortunate enough at the moment to not know anybody that’s going through it. I’m trying to think, maybe there’s been one or two over the years that I’ve talked to, but I did feel at first, in fact when I was going through my treatment I talked to the Macmillan nurse and I said, you know, I’d like to help at the hospital. I’d like to come in and help, talk to people who are going through i. And she said, Well, when you’re better we’ll do tha. And then when I was better I thought, No. I don’t want to go there. I don’t want to go back to that. I can’t bear it. I can’t face it. I just want to move o.

Is there any kind of local support group at all for ovarian cancer patients?

There is a local support group here and it is held in the middle of the day in a church, and very few people unfortunately have supported it. I think it must be hard for the people who are doing the organisation to be doing it for many, many years and not have a better response. But it is difficult and by talking to other patients I find they shy away from gatherings like this.

My husband and I were down in Devon taking a little holiday and we saw an inaugural meeting posted up, Please come and join us if you yourself are a sufferer or have cared forrsquo;, and I did have a friend living down there whose husband was in remission and she was very keen to go along, and we went along and there was a very friendly gathering of over sixty people, and the committee had decided to order very bright cheerful sweatshirts with a smiling sun on the logo, and they organise all kinds of speakers once a month and then in the summer months when the weather is suitable they have social occasions. They go on river trips and go out for cream teas, and it’s a very, very lively group, and they kindly send me all their information, so if there’s any chance of getting down to Devon I try and go and join in because they’re such a cheerful group of people.

Tell me about your involvement with your support group. Do you do it out of a sense that you want to help other people or do you get something back for yourself?

I think it’s a mixture of these two things. When I came out of hospital to start with I was getting support from the Macmillan social worker, and I quickly realised that apart from that I was very isolated. In hospital you’re quite cosseted, you feel looked after, you have people to talk to if you’re not sure what this ache or pain is, or what this feeling is. But when you’re out in the wider world the people you come across who have ovarian cancer, or even who, you know, who have cancer, are very limited. People don’t tend to go round wearing, as somebody said to me, wearing a badge saying I’ve had cance. You don’t know. And your family can’t really empathise with how you’re feeling because they haven’t been through it, they don’t know what you’re experiencing and, you know, through talking this over with my social worker I realised that probably there was a need for something in the local area and nobody seemed to be getting up off their backsides and organising anything.

So, with his help, myself and another lady decided to meet up, and basically through this meeting opened to anybody else who was interested and we were amazed at the response. I think the group took off with great gusto and at some points we were having forty people coming along to a meeting, and the benefits are tremendous. You feel supported; you can share your experience with people who understand. I was fortunate in that one lady who came to the group had had ovarian cancer and she was two years further down the line than me, and it was good to see that, yes, you know, I can aim for that, I can get there, somebody else has got there before me. And she actually had had much worse ovarian cancer than myself, and it was good because some of the niggles I had, odd aches and pains, she also had experienced, it was good in that respect.

There’s lots of information available, you get tasters of complementary therapies, health professionals come along and talk, it’s all very interesting and informative and, as I said, it’s good to see people who have survived cancer and are still going strong. I’m also very conscious that I’ve survived cancer thanks to medical skill, and I’m quite happy to put as much back as I can, and if it’s going along to a support group and showing people that it’s not a death sentence, that you can live normal lives, you can have families and it can all be well, that’s fine. I can’t give a lot money-wise but I can give time, and that’s basically why I’ve become involved.

One thing that I haven’t said was everything I picked up, even when I was in the hospital and I had the bag on, the drain, ladies had a handbag or something, I got a carrier bag. And so my wife being there, well she brought me a bum bag, and it fitted in just nicely, and we put that to them and said that’s a very good idea for a man. I felt out of place cos the women all have these bags. I had a carrier bag, and it was little things like that. I once went down to [name of village] and it was in a shop window, women, breast cancer. I went in and says could I speak to the manager, just thought, I had tha, she says, Yeah, I’m sorry about tha, she says, and in a lot of things I was reading, the same with the exercises, it was all for women, fasten your bra and stuff like that. I know men don’t have bras, but I don’t, it was all little things I was picking up on. don’t forget there’s men as well as women, and I made that the goal. I wasn’t aggressive, I have every respect for ladies who have got all this. It was like, well, we went to the [name of group] one day, we’ve got a newone of the ladies is sat down who’s in charge, we’ve got another lady now and I went to this meeting and my wife says that’s three times she’s mentioned all women and it is an all-woman action group, really. But I’m a man, and at the end of it I just went up to them just by myself and I says three times you mentioned ladies and just, I’ve had breast cancer. She said, I do apologis, and she says, Next time I’ll make sure I don’trdquo; And if they don’t mention it, that’s what attracts me or gets me, to say, I’ve got to say, I feel as though I have got to say something. I’m not aggressive, I’m not, I just make my point – men do have breast cancer. And that’s all I try and get over. And as I say, I’ve seen it, have you ever looked at the papers? The Evening Post, there was a guy in there once had it. In fact, he came for an interview with me as well for the Evening Post, yeah. So as I say, I do try my best to make the other half as well as the ladies, cos it does happen. It does happen.

So how do you feel, this probably follows on from this, my next question is actually about how pink the campaigns are and how, you know, all the campaigns are pink. they’re very feminine and
They are, but I’ve got pink shirts now. I do it, I go in pink shirts. I was annoyed at the Run For Life, in that I asked why are men, why can’t we join in? Why can’t men do it? it’s for ladies only. Why ladies only? That, I made my point on that one as well.

And what was the response you got back from that?

Well, they said there’s going to be one for men, there was one for men, apparently, but I don’t think it was in our area. Very, not asoutright as what the ladies are in most areas of England and Wales and Scotland are, there’s men who justyou do it off your own bat. They do have them but not in the same field as ladies do, which sort of upset me. It does upset me and, as I say, I just feel as though I do have to make a point. I don’t shout, I don’t bawl, I just make my point, and if they accept that, well that’sI feel as though I’ve achieved something.