When I went on the Herceptin treatment, I mean, there’s plenty of newspaper articles about people who are desperate to go onto Herceptin, and I was just of the opinion I thought well, there’s a small margin between the treatment that I’d had and the improvement that you get with Herceptin. There wasn’t that much, you gained, how much it was going to affect – yes, but Herceptin had only just been released for general use, but, prior to that it had all been used, people who had been said to have had secondaries and that sort of thing, or, so they were using it, and I was the one I – for these, for where we are, the area that we’re in, I’d be one of the first people to go on it. But they knew my, my heart was just, one side is just slightly behind the other one, one side. And they knew that it could affect it – it did do. I mean when I went for my operation they said, when I went upstairs they said, O he said, so this is before the Herceptin he said o he said have you had a heart attack well I said, If I have, I’ve missed it (laugh) – There’s ahe said, There’s a slight difference on your, on the counter that they d, the,you know the chart and it was just – so they knew you see, there was something that, and then the Herceptin just eh, heart couldn’t have stood that.

And it sounds like you’re very well informed about, you know you were saying about the kind of marginal gains that you would get from the Herceptin so did you– ?

Yes, well I just felt at the time, the reason why I was, I was, I felt, well, if I could get my general health back, do I need the Herceptin, is it – ? You know, this was after all the chemotherapy everything was finished, it was in the February and I’m thinking well do I need it?’ I mean you still go through something like 95% to 97% success rate, you know – there weren’t much in it. So that was why I thought, well is it better just to get my general health back or do I need this extra Herceptin treatment? Anyway – when I went in the February they said right, you’re on it straight awa.

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.

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.

Was it difficult for you- were you offered Herceptin or did you ask for it?

I’m HER2+, the characteristic of my tumour, which means that another way of attacking it is to block off its ability, again to gain sustenance, this time by means of Herceptin. Of course there was a controversy about the funding and all the rest of it. I don’t know- there was never any suggestion that I wouldn’t have it. I guess the timing was very- I was very lucky with the timing in the sense that I came along after all the fights had been fought, and before we had a sort of melt down in the- (laughs).

In the NHS?

The economy and who knows what’s to come. So, I went along to the cancer hospital again, only this time to the day unit. And another silo with another culture and another different patterns of sounds and movements and so on. And, I believe there can be some adverse side effects which show up at quite an early stage when it’s being administered, so it’s generally administered to start with over a relatively long time period. I think it was- was it three or four hours it was administered over. So it was suggested I should take plenty of books and things with me, which I did. And administered through a cannula in the back of my- was it in the back of my hand, I think it was yes. So I have a drip and sitting there, in my hand, and the arrangement of the day ward was in little bays with four beds or chairs sort of facing each other, two facing another two across a central corridor. And it wasn’t only people receiving Herceptin, it was people coming in for all sorts of other things, some of whom looked terribly unwell I should say. So it was quite distressing to see how unwell some people looked who were on, various sorts of drips and treatments. And, I’m not sure I was aware of any particular side effects of Herceptin. It was suggested that I might have a slightly sort of fluey feel. And, for a day or two after receiving it and it was difficult to tell really. I think possibly I could identify something that might vaguely be like that, but there was nothing very pronounced.

The biggest problem was the fact that my veins became so knocked about, so to all- so over a year, every three weeks. Towards what, nine, ten months in, they had huge difficulty, satisfactorily putting cannulas into me. So, and it wasn’t helped on one or two occasions I had quite a junior person who wasn’t very skilled. I think the most it took was six goes to get a cannula into me. And they had to then sort of- work their way up my arm until they could find a bit of vein that they could work with. So that was pretty unpleasant. That was the most painful and sort of distressing, aspect of the whole treatment

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,

And of course, Herceptin can impact on one’s heart functioning. So on top of that, every now and again I’d go and have a MUGA scan so called, to- you heard of MUGA scans?

No

MUGA might be an acronym for something but I can’t remember what it was. In essence they injected one with a radioactive dye, which stuck to one’s heart, and then they could take a gamma ray photograph, which- and look at the functioning of one’s heart. And in fact most, well maybe not most but quite a few of the other patients that I know, that I met along the way are still, am still in touch with, their heart was affected by having Herceptin and they needed to take medication in perpetuity to support that functioning, so yet another pill to take.

Mmm.

But towards the – I think it did have an impact on my heart, but my heart recovered. So I don’t need to- I think I’m probably quite strong.

Survived allthis barrage of different treatments-

Yeah, I was probably quite strong to start with.

But I finished chemotherapy on the 28th December 2006 and they would start me on a year’s course of Herceptin in, I’m going to say it was February of 2007, I had four of the courses, the problem being that I had a slight defect on my heart which one side slightly behind the other, and, they had to stop me having it because it had reduced the blood flow to my heart by 30%.

Right.

They did, they were aware of it when they started the Herceptin treatment that I was going to have to be monitored. So after four treatments of Herceptin that was the end of it, they wouldn’t risk any more. The risk was too great.

Only the side effects of the Herceptin treatment had to go under, the heart lady…

The cardiologist?

Yes – and she, she was very good.

Yeah.

And she put me through several tests and aspects of treatment over the course of, well I was going to say over two years but I’m not quite sure on that. And I had to go, keep going having tests – they put stuff in your veins andit feels cold.

So you’ve been back and forth to the hospitals…?

Oh, yes, various things yes, yeah, and she was dead chuffed when, when she signed me off, which would be November last year I think it was, she’d done her stuff, she said everything’s fine now your heart’s back to norma.

Good. So, so you feel that you’ve had good treatment?

Oh yes, yeah yep. They knew there could be a problem with the Herceptin, there was, and the, you know they dealt with it.