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Tim - Interview 19

Age at interview: 73
Age at diagnosis: 60
Brief Outline: Tim was diagnosed with breast cancer in 1996. He had a mastectomy, radiotherapy and tamoxifen for 7 years. The radiotherapy caused some burning of the skin and he developed a wound infection that cleared with antibiotics.
Background: Tim is a retired oil company executive. He is married and has 2 adult children. Ethnic background' White British (English).

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 Tim first noticed his nipple becoming painful and sensitive. The nipple then became inverted which he thought may be due to an infection and he applied Savlon cream to it. His wife persuaded him to show it to her brother who is a doctor. He advised him to see his own GP as soon as possible. He realised that there might be something seriously wrong when he was referred to the consultant.

 
When he first had problems with his nipple he had no idea men could develop breast cancer. He was shocked when the specialist telephoned and told him he had breast cancer. He wanted to get on with treatment and deal with it head on. He told his daughter and son immediately and friends as he saw them. He felt they should know, but did not want to make a big deal out of it. Most people were shocked but very supportive when they found out. 
 
He had a mastectomy, then radiotherapy. He took tamoxifen for about 7 years but stopped after he had a thrombosis following a hip operation. Whilst he was taking tamoxifen he experienced some loss of sexual drive but this resolved when he stopped taking tamoxifen. When he felt rather on his own after his active phase of treatment, he looked into some complementary therapies. He became a Reiki practitioner at this time and still uses this sometimes.
 
He cannot recall being given any written information and never met a breast care nurse, although he had a very good relationship with his surgeon. His wife was very supportive, but he also had other support networks including a men’s group that use drumming, meditation and rituals to work through issues. He has changed his lifestyle, embracing alternative therapies to make his life more meaningful. He views his body as a tool that enables him to live his life, doing the things he wants to. 
 
Since his diagnosis he has worked as a volunteer and as a fundraiser with the charity Breast Cancer Care, speaking about his experiences to raise awareness of men with breast cancer. 
 
 

Tim had no idea men could get breast cancer. He used Savlon on his tender, inverted nipple. He...

Tim had no idea men could get breast cancer. He used Savlon on his tender, inverted nipple. He...

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Then towards the end of 1995, I began to get an anomaly in the nipple of my right breast. It became a bit sensitive, and initially I have to say I thought- I decided to christen it my jogger’s nipple. Not that I actually do any jogging but you know it was- it sort of sounded good. However it got worse and in fact the nipple inverted which I found out later was a clear sign of breast cancer, but at that time I had no idea that men could get breast cancer and so I started putting Savlon on it which was a brilliant idea, to put Savlon onto cancer (laughs). Eventually, we visited [name of place] and my wife’s brother is a doctor. And one day, under her persuasion I got him to look at it, and he said to me, “I really think you’d better go to your GP and get it checked out”. So, when I got back, this is now in early 1996, I went to see my GP, and for the first time, he suggested, because he mentioned that I should need to see a Mr [name of surgeon], and I knew a Mr was a surgeon. So I realised that we were talking about something serious, and “yes” he said, “It looks as though you may have breast cancer”, which really was an extraordinary thought.

 
We met the team who were going to look after this, and they showed me the mammogram and there I found I was very lucky because the actual tumour was striking outwards, you could see how, on the thing you could see it was striking towards my nipple, which was why the nipple pulled in. And I think I was very lucky and the reason for that, and one of things that I talk about a lot, to try and help men, is that we don’t have very much breast tissue, and if we don’t get at it quickly, and I didn’t, I hung about, it can get off and running into other parts of your body and then that’s the danger. So I was extremely lucky that it went outwards towards the nipple, and so it didn’t start going the other way.
 
No it was just very tender, you know if you bumped it, ow! You know. And one gets that from time to time. As I say it, you know I thought it was jogger’s nipple, slightly jokey, but if you do bump your nipple or something, it gets sensitive, and I was being dismissive, I put the Savlon on, when it inverted, it definitely turned in like that, you see? But I think that was somehow reflex! I just thought that maybe it’s a little bit of a, you know sort of infection, you know that sort of thing you see. And I guess, I mean people have asked me before and I can’t remember now, I guess I hung about for something in the region of six months. Which is quite a long time, particularly for a man I would say, you know. Yeah.
 
Did you tell your wife at that point, that it was sore?
 
Oh yes, I mean she started saying to me, come on [name], you know stop being a silly Englishman, you know, I mean- go to the doctor. Oh, I said, it’s nothing. But she was persuading me and in fact I mean she also was saying, why don’t you talk to my brother, and it was to him that I showed it for the first time. And so she was aware of it and, I think she felt that I was a bit stupid not to have it looked at, you know.
 
And did your brother-in-law say to you it could be cancer, or did he just say, you should get that seen to?
 
No. No he just said, “Look, I think that’s important, you must go and see your GP when you go home”. He didn’t want to say, but he guessed straight away, I mean he- because of this inversion you see. That’s apparently a very typical sign, of it. 
 

Tim can feel his ribs in his chest since his surgery, which he said was as ‘a funny feeling’. He...

Tim can feel his ribs in his chest since his surgery, which he said was as ‘a funny feeling’. He...

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And the operation was very successful, the whole breast tissue, everything was taken away, in those days still they took all the lymph glands.

But, you know everything was removed, as far as we were aware at that time, and then I was told to report back later, you know the operation healed up very quickly actually, it was amazing how little pain there was, and in fact looking at me you would notice that I only have one nipple, but it doesn’t bother me in the least actually, it’s a very neat scar, but you can feel my ribs right there. It’s a funny feeling. And I had a bit of trouble with the muscle underneath my arm and its attachment for some time. Probably for about a year. If I used that arm too much, it was the base of the muscle, it used to get very sensitive, because it hadn’t got anything to hold onto. It used to hold on to this piece of muscle here. But it’s settled down more or less now, cause we’re talking twelve years ago now.

 

 

 

Tim was very tired after his treatment finished and got an infection in his chest. His wife’s...

Tim was very tired after his treatment finished and got an infection in his chest. His wife’s...

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 So how did you feel after your radiotherapy, in comparison?

 
Well I didn’t feel very well actually. Funnily enough I got an infection and I had a great explosion out of my chest of something, I don’t know what it was, towards the last few days, I was really feeling quite ill. And I remember that we went on a quick trip to Paris, after we’d finished the radiotherapy, and I remember going down to the Tuileries Gardens to look at my favourite statues there by, Aristide Maillol, who was a famous French sculptor, and I was so tired I just sat on a bench by one of them, and I went to sleep for a bit. And, we flew home, and then I think it was in the morning, or the night. I had this- I had dressings on you know, for the skin, and then suddenly boof, all this stuff came out of my chest. And I’d obviously, they said, you know I had to them have quite some- type of what do you call it? Forgotten the word for the moment, anyhow, treatment.
 
Antibiotics?
 
Antibiotics yeah. Antibiotics. To clear it up.
 
Just oral antibiotics or- Were you in hospital for that?
 
No, I just had a set of pills, yeah. And there wasn’t a clear link, saying you know the radiotherapy did that, but obviously somehow I got an infection in my chest, and I had these sore places, and then suddenly one of them just whoosh, you know and lots of sort of stuff came out. It was quite surprising actually. And I felt quickly better actually, so I was obviously sort of feverish in a way.
 
Yeah. So, so actually her radiotherapy went a lot better than mine. And she didn’t get so badly burnt either. I really got quite, you know the skin was coming off, it was like a very bad sunburn, and I had some special cream to put on and dressings which we used to put on every day. So it was twenty five days I think, yeah.
 

Tim had been taking tamoxifen for about seven years when he developed a thrombosis in his leg...

Tim had been taking tamoxifen for about seven years when he developed a thrombosis in his leg...

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And what was your experience of taking tamoxifen?

 
Ha- well I took it for five years, I’m afraid the main experience was that it had a terrible, inhibition on your sort of sexual side, you know. That was the sad thing. But we coped fine. Cause it’s sort of hormonal.
 
But after five years, my oncologist said, “Its still- we’re working with this, we haven’t completed all of the research yet, but I could recommend to you that it’s still worth carrying on”. I forget he gave me some percentages or something. So I said okay, “I’ll go on taking it”, and I went on for about seven years, and then I had my hip operation, and after the hip operation, I got a thrombosis in this leg you see. Which apparently is quite common, it was silly story, I won’t get into all that but they found it luckily, locally in the GP they found it. And I was five seconds later I was up in [name of hospital], getting sort of warfarin and all that you know. But, during the course of all that, somebody said, “Are you on tamoxifen?” And I said, “Yes. Ah, you know that can induce it- that kind of helps the thrombosis”, so I said, “okay that’s it, stop!” Now they tell me, you know. I mean it’s all percentages and things, but I thought it was as good a reason to stop as any. So that very day, I said right, that’s my last tamoxifen pill, soon as I heard it, you know. But I already had a thrombosis, but, and I thought, that was funny because they knew- I mean I had to go back and make a few statements up in the [name of hospital], because they knew actually, that I was taking tamoxifen, they took it over and administered it for me. So- and they also knew that apparently it encouraged the formation of a thrombosis. So I didn’t think that was very clever.
 

Tim felt somewhat ‘on his own’ after he was discharged on Tamoxifen after his surgery. He...

Tim felt somewhat ‘on his own’ after he was discharged on Tamoxifen after his surgery. He...

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 So that was it, and I was then tested and it was suggested I should have tamoxifen, and I had- they did all sorts of scans and things, and found that there was no cancer anywhere else. And at a certain point they said, “Okay, we’ve done the knife work, we’ve put you on pills, goodbye, come back in six months time”. And I came home, and I thought wow, I sort of feel quite on my own here [laughing] now. So I started chatting to my daughter and my daughter-in-law and various other people and all sorts of- my step-daughter, and all sorts of ideas came up, and I followed up on a lot of different things, and out of that, I developed really quite a change in my life. One of the obvious parts was dieting, and I found a very interesting Greek doctor, who helped me a lot with thinking about dieting and positively looking at my life. I had reflexology once, and the- interestingly enough the thing that person picked up most was my stomach. I’ve always had a bit of a weak stomach, and so this lady suggested I should use a type of colon treatment, and I use something called lepicol which is psyllium husks, it’s an inert powder, I’ve used it ever since, and it’s been incredibly good [laughs.]. It has an extraordinary effect on keeping my stomach comfortable. So that was another aspect. Then of course I had [name of lady] and in fact we went back to her and my wife has joined me, we’ve been going to see her once a year, ever since. So that was another aspect. I then met a friend who- oh and also my daughter, it was my daughter who started this, she said, “Dad you’ve got these nice warm hands, have you thought of Reiki?” And I said, “No, I’ve not really heard of it”. So we discussed it and to cut a long story short, I discovered a Reiki Master who lived just outside Richmond, so I went and was initiated into Reiki 1, and I’ve been using that ever since. I did in fact go to the level of Reiki 2. 

 

Tim was also in a men’s group. They practiced certain rituals and the group offered a supportive...

Tim was also in a men’s group. They practiced certain rituals and the group offered a supportive...

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 And 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.

 
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. 
 

Tim had been part of a very supportive men’s group. Within the group he had been able to let out...

Tim had been part of a very supportive men’s group. Within the group he had been able to let out...

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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. 

 

 

Tim thinks that it is difficult to get the balance between raising awareness that men get breast...

Tim thinks that it is difficult to get the balance between raising awareness that men get breast...

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 In the literature, when we started doing this study, we talked about “Male breast cancer”, and I was just wondering if you had any opinions on that term?

 
What as just describing it, male breast cancer?
 
Yes.
 
Not really no. As I say the joke for me was that we don’t have breasts we have chests, but I think it should be male breast cancer. It is a difficult thing, I mean every time I’m involved with something with Breast Cancer Care, the discussion is about women, with women, I’m on the committee this year with [name of wife] for the Carol Service, which this year’s going to be in St Paul’s by the way, so it’s going to be a fantastic business. And the committee is about fourteen people, all women except me. And the accent is all the time on women, and quite rightly so because there are forty five thousand women and only two hundred men. So it’s very difficult, you have to once in a while say, and men of course. So I don’t quite know how to handle it. It’s very difficult because there’s such a few, a small number of men get it, that it’s not worth somehow too much effort, to sort of highlight it you see. But I think it’s necessary, somehow you’ve got to have this tag on, you know, and men. And somehow men need to get the message that I have, which is, if something happens, if you get something, go to the doctor. You know, and I don’t know how you get that really, I don’t know, it’s a very- I mean the only way is to keep quietly mentioning it.
 
 
I think some of the- there was a couple of men that didn’t like the term because it made it sound as though it was something different. Because as said we talk about breast cancer and people assume it’s women, and by making it male breast cancer, we’re sounding as though it’s something different to what the woman have. While actually it’s the same, more or less the same disease?
 
Yeah.
 
I think that’s why the (overtalking)...
 
Okay I can understand that but I mean I think it needs to be highlighted you see. So I don’t respond in that way, I think, you know I think it’s important to understand that. If way back at the beginning, we’d had female breast cancer and male chest cancer, maybe those sort of muscular rugby playing men who get it, might have felt a little better about it because it is a disease that men can get and it is different, but it’s the same. The difficulty is that it’s a little carbuncle, hanging on this huge mass of poor women who get it, you know. 
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