Who would you say gave you the most support as you went through?

I think the family is the main support that you have. they’re there, [my wife] was my rock, really, you know, andif I felt down then she’d pull me up and I think what happens when youwhat she said before is that if she felt down, she’d go away from me and maybe to a friend’s house and outpour, so that it wouldn’t affect me. But obviously I had her and I had my other members of the family that I could speak to as well, so they were the main support, the closest support, and you’ve got friends as well round you, but I think thethe specialists that I had to speak to and the nurse, breast care nurse, were very good, because I could speak to them whenever I wanted to and my oncologist, I even text him things and he’d come back to me and, you knowyou know, I don’t know how often that happens elsewhere but I thought that was really good that he would have the time to do that.

What sort of things, can you give me examples of what sort of things that [your wife] was doing to help support you?

I think it was a case ofmaking me feel positive all the time and beingnot being, sort of down around me. Keeping the house happy. Keeping the house upbeat, that was a good thing. Her helping me with all the looking into stuff and she would print stuff off for me as well from the websites and give it to me and look, read this, look at thi, this sort of thing, so that helped and she helped with the, as I said, with the e-mails and the contacting the people when I was trying to go through the Herceptin, trying to get the Herceptin process, so that triggered a lot of other things in terms of getting the media involved and I don’t think probably would have had so much coverage hadn’t it been for [my wife], cos she e-mailed sort of various people and then some came back to her, so that was really good.

I mean, the breast care specialist nurse was sort of saying, you know, this is what would happen and the surgeon was saying yes, you could have an operation and, you know, if the biopsy comes back as positive then you’d have to have an operation and various treatments from then, but they didn’t sort of go into too much detail at that point, but then they also said that there’s a support network here for you, you know, you’re not alone and this sort of thing. It was very good, andthe breast care nurses up there are excellent as well, cos we had, there was a couple that dealt with everybody that had breast cancer andtheir way and their knowledge and everything like that was, you know, exceptional. And if we ever had a problem, we could go to her and just discuss it with her or ask her anything and this sort of thing, so that was good.

OK, you said at the time that obviously the breast care nurses, you obviously sound as though you have a very good relationship with them. Did they, what support did they offer you at the time?

Well, they sat down with myself and my wife, [name of nurse] was her name, and she just sort of went through everything and said look, if there’s anything you want to talk about, if you don’t think about, if you’ve got a question now then you can always ring me up and either leave a message or if I’m there, speak to m and it was just the fact that they were so helpful andmade you feel as though they were there all the time for you and they probably weren’t, cos they had so many people they had to deal with but it was just good to know that they were there and they knew so much, you know? They weren’t sort of somebody very new that didn’t have experience of all the different types of breast cancer and people and this sort of thing.

We also had counselling as well, which helped, so it was another person that you could, you could fall back on, you could speak to on a regular basis. We had that sort of every week for a certain period of time, both myself and my wife, yeah.

Together or separate?

Yeah.

Together?

Yeah. So we could sort of talk about our thoughts and fears andand, you know, going forward, what would happen, how you’d feel, how to get over that, that sort of thing. So that was really helpful. I think at the timeit’s just good to talk to different people about what you’re thinking sometimes, rather than keeping it to yourself.

But after that meeting we then sort of went through our channels that we’d already made went to the press again and spoke to Anne Widdecombe and put a bit more sort of pressure on, if you see what I mean, through the media, and then within a week my oncologists are giving me a call again to say that he’d been allowed to put me forward now and that they’d changed their mind, so that was good news. And then he said we’d be able to put you through for exceptional funding which meant that they’d have to put my case forward to a panel and then the panel would sit within the Trust and then they’d decide whether they’d give me the funding for it, and I could have it.

So it still wasn’t over and it was still sort of dragging on a bit, and you can imagine between that sort of end of February and going forward to when I actually did start it, it was a three-month period of not knowing and anxious about, you know, a drug that I should be having but I’m not and what difference is it making and that sort of thing to my body and you know? And I actually wrote a letter as well myself to the insurance company and my trustees of my health care insurance company sort of putting my case forward and that still didn’t make any difference within that sort of time period. When it actually came to the health care trust’s sitting for their exceptional funding meeting, whatever you call it, I can remember I went to work and I didn’t really do anything. I couldn’t concentrate all day, just sort of thinking about what they were gonna say and what the decision was gonna be. Because my oncologist said that you should really start the treatment within six months of finishing your last treatment and obviously time was getting on and we didn’t want to sort of leave it too long. And on that day that they were sitting, the phone call finally came through from the health care trust committee and I remember my colleague was with me at the time and the professor came on the line and said I’m really pleased to tell you that you’ve got funding for Hercepti and I just sort of broke down in tears and it was just a weight off my shoulders after obviously going through everything else, to know that yes, I’ve got it and we could go forward and that’s that sort of final step, if you see what I mean, in terms of the treatments I was going through. So that was great. I meansuperb news, cos we had battled when we shouldn’t have had to, but we had got there in the end and, you know, it paid in the end, so that was good news, and I can remember coming back that day, back home and there was the new BBC South East were here again, put on the story about getting Herceptin and it was all good publicity and all good coverage for the fact that men could get breast cancer as well and good coverage for the Herceptin, for people getting Herceptin, not just, you know, women, men, everybody.

Herceptin was all planned again and that was something again I didn’t know quite what to expect cos it was a brand new drug and people had been trialled on it and that sort of thing and I didn’t even know that it was intravenous and some people as well that I spoke to when I was going through the treatment said how’s your tablets and all this sort of thing and I said well, actually I’mI have to go into hospital and it’s intravenously given And they said oh, we didn’t realise tha, you know? But I had the treatment over the period of a year and it was 18 treatments in all, I think it was, so sort of again every three weeks. Going up to [the] Hospital. The first dose was a loading dose that was slightly more, slightly longer, and they give it, give it to you and over about an hour and a half, and then they observe you for about another three hours afterwards, so I was up the hospital that first time for most of the day and with the oncology department, with the going for the Herceptin, that was when I found there was a lot more sort of delays in terms of getting seen and getting treated and this sort of thing, because they’re such a busy department and there are so many people that come into that department every day andif something sort of puts somebody behind, then it can throw everything out and they getyou know unseen things that they don’t plan for and then that throws everything out as well, so I mean, I have appointments sometimes for, like, 12 o’clock midday and get up there in good time and then I wouldn’t actually have my treatment till 2 o’clock, half past 2 and you know, you’reyou’re tired, sitting in a waiting room for two and a half hours anyway and then you’ve got to go in and have your treatment and that’s another sitting down in the treatment room for two hours and then by the time you come out it’s, you know, you’re knackered, basically [laughs].

Yeah.

But I would say that they did get a lot better up at [the] Hospital cos they split the oncology department in two and they had a new department built as well, and soprobably from about sort of two thirds of the way through my treatment it got better, cos a lot of people went down the other department and suddenly the waiting room went from being packed to sort of half a dozen people being in there at one time, so it made things a lot easier and the waiting times went down to sort of within sort of half an hour.

That’s good.

Yeah, compared to a couple of hours but throughout the Herceptin as well, I found the worst thing for me was just thethe actual injection and, yeah, getting the vein and that sort of thing. The actual treatment wasn’t too bad in terms of making me feel ill or anything like that and I think that is down again to the anti-sickness drugs and things like that they give you, have advanced so much that they didn’t really affect me and they said you can get sort of flu-like symptoms and that sort of thing, which I didn’t experience and it can affect your heart, they said, and I had to have regular heart scans to make sure that I was performing properly but apart from that that all went well as well, which I was really pleased about but obviously it was a long time, it was a years’ treatment, so going in every three weeks into the hospital counting down the amount of treatments you’ve got left,

Did they, did you have a choice in your treatment?

Yeah.

You did?

Yeah. I mean, the surgeon, when she was discussing what would happen, she went through the options obviously, the mastectomy and sentinel node biopsy or complete lymph node clearance. She also discussed the option of, what’s it called again?

The chemo?

No. About where they take the flap of muscle from round the back
An LD flap?

Reconstruction… which was good because, you know, normally it would be just women she was talking to and she’d discuss that with me as well and whether I’d want to do that and if I did decide on that then it would be a longer operation and slightly longer recovery, cos obviously have to take the flap and put it round the front and this sort of thing. And then talked about the nipple and I said, well, after we’d thought about it, I said, well, no, I don’tit doesn’t really affect me as much as it would a woman, because, you know, I haven’t got a big chest and there’s not a lot up top for me, so personally it wouldn’t really sort ofwhen I’ve got clothes on, you wouldn’t really notice as much as a woman, so it was good that they offered that to me and I thought about it and I thought well, I don’t really want to go through a longer operation, for one, and longer recovery so I decided upon just a mastectomy.

All within this period of time as well, I should have said that withinfrom seeing my oncologist going forward, because he had mentioned about Herceptin, I was trying to, be put forward for this, and we kept coming across sort of barriers, the first one being my private healthcare company who wouldn’t pay for it and, they said it didn’t come within their criteria of treatment, and that they said it was preventative treatment. And I said well surely every drug’s a preventative treatment, really? But there was a lot of sort of to-ing and fro-ing between myself and my oncologist, writing letters to the insurance company and this sort of thing and this went on for quite a while and they said no and then we sort of went back to them again and sort ofa bit more evidence, if you like, and they still said no and we even got Anne Widdecombe involved, which is our local MP, and this sort of thing. So this is why there was a lot of press involved andthere was bits in the paper and did various interviews for the South East News and this sort of thing to sort of raise awareness of the fact that I couldn’t get this treatment as well as raise awareness for the fact that men could get breast cancer as well, so it was good in that respect. The next step after the radiotherapy would have, or should have been the Herceptin sort of as soon as possible, but between when I had finished, which was February 2006 that I finished my radiotherapy, I didn’t actually start Herceptin until May.

So there was a sort of three-month gap, and between that time it was all sort of rigmarole of trying to get the insurance company to pay for it and then they said no, and then we went, then my oncologist went to try and get it through the NHS and of course at that stage as well it still wasn’t licensed and there was a lot of other people trying to get it and they were saying about a postcode lottery and this sort of thing, and the first sort of time my oncologist tried to get it, I remember him saying well, we’ve got a criteria that we can give it in the hospital, you know, you fit within that, you know, got HR2 positive cancer, blah, blah, blahSo we thought great, you know? Shouldn’t be a problem at all, and then it turned out that he’d put me forward for it and then he got a rejection from sort of higher up within the hospital to say that I didn’t actually fit within the criteria, and I thought, well, you said that we did and he said well, no, it’s only, the money’s apparently been put aside for wome and I can remember when he said that, [my wife] was with me at the time in hospital and saidyou know, this can’t be right, you know? Surelyif it’s there, it should be for everybody and not just because it says women. And we went away from that feeling really angry and upset and obviously it wasn’t the oncologist’s fault, cos he was doing his job for us and he was just told sort of from higher up.

I finished my radiotherapy, I didn’t actually start Herceptin until May.

So there was a sort of three-month gap, and between that time it was all sort of rigmarole of trying to get the insurance company to pay for it. And then they said no, and then we went, then my oncologist went to try and get it through the NHS. And of course at that stage as well it still wasn’t licensed and there was a lot of other people trying to get it, and they were saying about a postcode lottery and this sort of thing. And the first sort of time my oncologist tried to get it, I remember him saying well, we’ve got a criteria that we can give it in the hospital, you know, you fit within that, you know, got HR2 positive cancer, blah, blah, blah So we thought great, you know? Shouldn’t be a problem at all, and then it turned out that he’d put me forward for it and then he got a rejection from sort of higher up within the hospital to say that I didn’t actually fit within the criteria, and I thought, well, you said that we did and he said well, no, it’s only, the money’s apparently been put aside for wome and I can remember when he said that, [my wife] was with me at the time in hospital and saidyou know, this can’t be right, you know? Surelyif it’s there, it should be for everybody and not just because it says women. And we went away from that feeling really angry and upset and obviously it wasn’t the oncologist’s fault, cos he was doing his job for us and he was just told sort of from higher up and at the time, whether it was to do with money or what, I really don’t know.

How did that make you feel when they said to you, you were a case for Herceptin and then, oh no you’re a man so you aren’t a case for it. How did that make you feel?

Angryown. it’s just a big knock down and you think well, there’s no difference breast cancer’s the same in men and womenand it was actually at that point I forgot to mention I actually rang Roche who make Herceptin myself and managed to get through to somebody who could tell me if it was specifically for women and I asked them that, and they said no it wasn’t specifically for women it can be used in men and I actually got them to email me through something, I think it was a case study or something from them doing it, trialling it on a man, a case study of a man so I knew in my own my mind that there was no reason why I shouldn’t have this and if I couldn’t have it, and if they were worried about giving it to me it didn’t matter cos I’d go for it anyway. You know, if it gave me a better chance of survival I’d take it at my own risk. If I wanted to do it, let me have it (laughs).

Was that the only time you felt discriminated against because you were a man?

Yeah really, it was only that time, every other time there was no difference in terms of treatment or the way I was treated by other people at the hospital or the staff or anything like thatm that set me apart from anybody else that was going through treatment for breast cancer.

It started back in January 2005 which is when I first noticed the lump on the right of my left nipple. I just sort of felt it and didn’t think anything of it, because I was, most men, think you can’t get breast cancer if you’re a man. This is what I thought, and so I left it and it was only about six months later that my wife felt it and said what’s that? and I said well, I don’t really know, I think it’s a fatty lump or something, and then she said well, I think you better get it checked out at the doctors so made an appointment at the doctors and still didn’t think anything of it. He felt it and said yes, well it’s probably nothing, you know, but I’ll get you checked out by the sort of breast care specialists at the hospital and made me an appointment at [the local] Hospital, which was probably about a week or so later with the doctor’s appointment. And then it was July ’05, the 18thof July, I think, and I had the appointment, went in, and of course, being a specialist they knew sort of something wasn’t right straight away, but they didn’t tell me that straight away, they sort of took me through somewhere else, had the mammogram, then they looked at it and then they took me into another room and said yes, we’ll do a biopsy. Did that, and then after that, about ten minutes later, they took me through to another room, sort of nice powder-coloured lilac room. And still didn’t think it was gonna be bad news but my wife thought why are they taking us in here? and that’s when they sort of sat us down and said well, we think it’s breast cancer, but we’ve got to wait for the result of the biopsy just to be 100 percent sure.

You first noticed the problem and then you just dismissed it for about six months, you said. Did you just?

Yeah, because I mean, as I said, I didn’t know that men could get breast cancer and my wife didn’t know either and I just thought that it was some sort of fatty lump. It didn’t you know, it wasn’t actually on the nipple or anything so it wasn’t affecting the nipple, which might have made me think a bit more about oh something’s wrong, but just being to the right hand side of the left nipple I just sort of felt it every now and again and thought well, it’s not going away, but nothing to worry about, it’s not hurting, you know, or anything like that, so that’s why

But it wasn’t for another few months that your wife found it as well?

My wife felt it, yeah.

And she’d said

And she said well, go and get it checked out cos that shouldn’t be there, you know, it’s not right, really.

Did you ask her about it? Did you mention it to her or did she find it herself?

I didn’t actually, no, and this is what happens with men, isn’t it, really? I mean, you keep quiet about things and oh, there’s nothing. You don’t get it seen to quick enough and that’s something I’ve learned obviously since then that if there is something wrong, however small, just go to the doctor and get it checked out because, you know, although it may be nothing most of the time, sometimes it could be, and just thank God that I did go at that time to get it checked out.

So would you say it was really because of your wife’s prompting you thought you’d better go andsee your GP?

Yeah, because if she hadn’t have said it I would have probably just still left it until such time as she had or it got worse and that might have been too late, and that, I think, is one of the things with breast cancer in men is that the ignorant side of it because it’s not as well known that men don’t do anything about it, and it’s normally when they’re sort of over 60 that you tend to find that most men with breast cancer are older and it’s too late, you know, once they want to do something about it, it’s it’s too late and too advanced, so

When you went to see your GP, did he give he didn’t give you indication he thought it could be cancer? You just thought that’s a bit strange, that’s what he said to you and?

Yeah, he didn’t give me any indication at the time that it could be cancer, but he may have thought it and obviously referred me to the surgeon up at the hospital.

But you said it was quite quickly you were seen at the hospital?

Yeah, I think it was within sort of a week or so that the appointment was made at the hospital, yeah.

I had the appointment, went in, and of course, being a specialist they knew sort of something wasn’t right straight away, but they didn’t tell me that straight away, they sort of took me through somewhere else, had the mammogram, then they looked at it and then they took me into another room and said, Yes, we’ll do a biopsy Did that, and then after that, about ten minutes later, they took me through to another room, sort of nice powder-coloured lilac room. And still didn’t think it was gonna be bad news but my wife thought why are they taking us in here and that’s when they sort of sat us down and said, Well, we think it’s breast cancer, but we’ve got to wait for the result of the biopsy just to be 100 percent sure Of course, that sort of hit me, I wasgobsmacked. I didn’t know what to say. I wentI can remember obviously being the summer it was hot and I felt really faint. I had to lay down in the hospital [laughs]. My wife was crying obviously cos of the news and my son was with us as well, my eldest, [son], in the room as well, andso he heard everything that was being said, and he was just sort of comforting [my wife] andthere’s me sort of laid back and them getting me a cup of tea, putting the fan on, this sort of thing, so it was a real bolt out the blue and it was one of my wife’s biggest fears, to be told that she’s got breast cancer, and it was me that was being told, so it was a real sort of shock. After sort of regaining my composure and that andand sort of taking it on board, I then sort of started talking to the nurse about what had happened and the surgeon was there as well. [name of surgeon] andsaid, What happens next? What’s the sort of timescale and this sort of thing, and they said, Well, we get the result back but we can start planning things now, the worst sort of scenario And they said, Obviously if it is cancer then you’ll have to have a mastectom, and then obviously going on from there, different treatments depending on what we find. SoI said OK, fair enough

When you were given your breast cancer diagnosis and obviously it came as a terrible shock, do you think it was because, or maybe it was both, that it was a breast cancer diagnosis or it was just a cancer diagnosis?

I think a cancer diagnosis in the first instance because that word to anybody is just fear, isn’t it, really? Andfrom my own experience my granddad died of cancer, and it was lung cancer, and I can remember seeing him in hospital and how ill he was and it’s things like that that can affect you as well. You think oh, Go, you know, could that be me somewhere down the line? But happily it wasn’t and the advances these days with drugs and technology and things like that are so great that you’ve got a far better chance of survival when you’ve got cancer than you did, you know, 25 years ago or whatever.

She also discussed the option ofwhat’s it called again?

The chemo?

No. About where they take the flap of muscle from round the back
An LD flap?

Reconstruction.

Yeah.

which was good because, you know, normally it would be just women she was talking to and she’d discuss that with me as well and whether I’d want to do that and if I did decide on that then it would be a longer operation and slightly longer recovery, cos obviously have to take the flap and put it round the front and this sort of thing. And then talked about the nipple and I said, well, after we’d thought about it, I said, well, no, I don’tit doesn’t really affect me as much as it would a woman, because, you know, I haven’t got a big chest and there’s not a lot up top for me, so personally it wouldn’t really sort ofwhen I’ve got clothes on, you wouldn’t really notice as much as a woman, so it was good that they offered that to me and I thought about it and I thought well, I don’t really want to go through a longer operation, for one, and longer recovery so I decided upon just a mastectomy.

Right.

So yeah, they did give you the various options, which was good, and it was all explained.

Right.

Yeah.

Have you ever had, since then have you had the offer to reconstruct since?

I haven’t since, but after thesorry, when she was discussing this, about the reconstruction, he said, You can have it now or at a later stage Butsort of since I had the operation and going through my treatments, I hadn’t sort of discussed that further with her or with [name of Dr] about doing it, andand as it happens, the actualI mean, it’s not a lot of difference, really, either side. Soyou know, hasn’t really affected me too much.

OK. Do you think you’d ever get a nipple reconstructed?

No.

No?

No. No. I mean, for some people it may affect them differently in that they probably wouldn’t want to be seen with a bare chest with no nipple on one side and, yeah, not exactly the same size and shape as the other, but to me it didn’t matter at all. You know, and I’ve been swimming and this sort of thing and it doesn’t bother me.

The next step was the radiotherapy which [oncologist] told me about. And again he sort of laid out and gave me a print off of all the dates, cos that, as you probably know, is every day, for me it was over a period of three weeks three.. two or three weeks. It was three years ago now. So the first one you have to go in and they lay you down and they measure you and they put the little pin prick tattoo on your chest and make sure everything’s sort of mapped out for the radiotherapy machine. So that appointment takes a bit longer than the rest of them, and they give you sort of leaflets on it and tell you what you should do and you should apply sort of aqueous cream every day and there’sexcuse me, your chest could get burnt and, I thought oh, fair enough, I mean, I do all I can to sort of make it as easy as possible throughout the process, so I bought a big tub of aqueous cream and thought well, I’ll slop this on as much as possible and, when it actually came to the radiotherapy it was a case of I had that obviously at the hospital, can’t do that at home, I went in and that was when you started to get the hospital experience, which I hadn’t had with the chemo, sort of waiting around a bit and then waiting for your turn, then going in and this sort of thing. I must say, though, for the radiotherapy I never had to wait an awful long time, to actually get in, although the department was a very busy one they had about three or four machines up there that could be used at any one time, soI think probably the maximum I had to wait was probably about half an hour at any time, so it wasn’t really too bad.

That’s quite good.

And, the actual radiotherapy experience, I mean, some people I’ve read and heard have hated it and didn’t like it, but I mean, to me it was nothing really compared to the chemo or anything else that I’ve had, cos you’re just laying there, and you know, it happens and you get up and you go away and then you come back for your next one. I suppose it’s the actual fact that the area is getting treated and then progressively over the period of time it gets redder and redder and you can see the actual, you know, patch that they’re treating, and that it can get quite sore for some people, but as I said, the aqueous cream did help an awful lot with me cos it didn’t reallyand the oncologist said it could peel and things like that, but it didn’t happen at all with me, [small laugh] so it was excellent.

When people say chemotherap it’s one of these things that you automatically think oh God, you know, if you’ve got to have that, you’re on your way ou sort of thing, you know? But the advances in drugs these days are so great that, you know, they’ve come on so much that I think it’speople’s perceptions of it are so different, before and then after they’ve had it. And, I can remember having, being really, really nervous before I had the first one, and thinking I’m going to be thowing up, I’m going to be, you know, so ill and this, that and the other, and can remember sitting here in the same chair, having the chemotherapy treatment, and I decided that I’d have cold caps. And they gave me a couple to stick in the freezer and I thought well, didn’t bother me whether I lost my hair or not, but if it’s there to try, then why not try it? So, been putting these freezing cold ice caps on, which were not very nice, andand managed to bear it, though, so that was alright, and started having the chemotherapy, the first treatment, and it was a very strange thing, especially the one they give you and itif they put it in too quickly it feels like you’ve got a pricklysitting on something prickly, if you know what I mean? Think it was epirubicinthe red one but yeah, I mean, I remember seeing all the different tubes of drugs that had to be put into me and you think God, that’s a lot, there are so many tubes, great big ones and small ones And I remember [my wife] saying to me afterwards, I went grey [laughs] during the chemotherapy, which was strange, but once I got the first one out the way and I knew what it was like, and how long it would take and that sort of thing, then I knew, I thought well, fine, that’s the first one out the way, only five more to go. It wasn’t too bad, and now we’ve just got to wait and see what happens, you know, whether I feel sick or this sort of thing
So it sounds as though your experience of treatment was quite a positive one?

To me it was yeah, I mean, before as I said, I was sort of dreading the word chemotherapy and thinking what was gonna happen, I was gonna be really ill, and then coming through it out the other side and you’re looking back and you think well, actually, for me it wasn’t too bad you know