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Interview 43

Age at interview: 35
Age at diagnosis: 30
Brief Outline: Testicular cancer (teratoma) with secondary tumours in lung and abdomen diagnosed in 1997. Orchidectomy, followed by 5 months of chemotherapy (10 days in hospital each month).
Background: Separated, 1 child.

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Explains that his first symptoms were sore nipples and back pain.

Explains that his first symptoms were sore nipples and back pain.

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Yes, I started with a bad back in the summer of 97 which quickly added to those symptoms I started with, sore nipples, nipple tenderness and even nipple swelling. And really unbeknown to me those were the early signs because of the hormone imbalance that's caused by the testicles not working properly, they were the early signs, allied to the fact that the tumour had spread into my back which was causing the back pain.

And then you went to your doctor?

And I went to my GP who really didn't recognise those as being symptoms that you know that could exist, they were, all really the GPs at that time were aware of would be to look out for things like swelling of the testicles. And since that point I've actually seen other GPs and I've told them when I've seen them that you know there are other symptoms that can be there and it's been to their surprise really. And in fact I've even been in hospital with lads that had exactly the same problems as I have er either with a bad back or with nipple swelling and these lads had all had testicular cancer as well.

 

Recalls that he hid his emotion from the doctor when given the diagnosis.

Recalls that he hid his emotion from the doctor when given the diagnosis.

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Yeah I've always been the sort of person that's always fought things, I've always, not physically fought but you know always been proud of the way that I get on with things and I've always been, you know want to see the funny side of things really. And I actually said to the doctor at the time when he told me, he said, " You are allowed to show some emotion." And I just said, "Doctor, look I'm a Leeds United supported, I get worse news than this every Saturday." And he said "Are you sure you're alright, do you want people, me to ring people?" I said, "No, no I'll do it." And he went out of the room and when he went out the room I burst into tears and I don't mind admitting it, yeah.

 

Says that he is convinced that the increase in testicular cancer is due to something in the food...

Says that he is convinced that the increase in testicular cancer is due to something in the food...

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Well I do know from a couple of years ago that they have said that it's a gene, research at one of the hospitals showed that it's a gene that's passed down from the mother's side. Now that doesn't necessarily say that that is the case all the time but they know that there is a gene that in some cases does cause testicular cancer. I know it's on the increase, I have my views on it which I don't say there's any medical proof, but I'm convinced it's either something in the food chain or the atmosphere generally because I know whether it's chemicals that are pumped into the atmosphere or whether it's something that's been sprayed on crops or something injected into animals or in the water supply, I'm convinced for the simple reason that these things are, this thing is increasing. And I know one of the hospitals that I went to, whether they all do it I don't know but they had little dots spread all around the city that showed the cases where people had certain types of cancer. So I guess they are thinking on those lines. They are looking for environmental causes. 

 

Explains that chemotherapy damaged his lungs and kidneys.

Explains that chemotherapy damaged his lungs and kidneys.

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Another 2 months of it and on top of that they also told me that they did regular scans and regular blood tests and they also do lung function tests and kidney function tests. And one of the worst things, as you asked me before, one of the worst things was the lung function, my lungs were damaged by the drugs. I'm not sure, I think it was the bleomycin that damaged my lungs. I was left afterwards with a lot of scarring in my lungs so they stopped me on the bleomycin. And the cisplatin was causing me kidney damage so I had to go onto a drug called carboplatin which was slightly less effective but instead of being on the three drugs I was on two drugs, one of which was changed. So me being the inquisitive person I was wanted to know what does this mean for me? And it meant that the treatment might be slightly less effective but they couldn't at that time afford to continue with it because I was just getting so much lung damage and kidney damage as well.

Has that left you with long-term lung and kidney damage?

Initially I had lung scarring for, oh at least a good 12 months there was lung scarring and I was out of breath. If I walked up a flight of stairs I was out of breath. And they also gave me steroids for my breathing because my breathing was bad, they gave me steroids to help with the breathing. And in fact one of the things that came out of that was the determination to do the Great North Run, which I did. And as far as the kidneys are concerned I was left with kidney impairment. 

 

Explains that hypnotherapy helps him to relax and think more positively.

Explains that hypnotherapy helps him to relax and think more positively.

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Do you mind explaining what hypnotherapy is like?

Yeah, well I started off by describing things that had, sat down with the lady and described the things that had gone on over the past you know 4 years, not only the cancer but other events that had happened you know deaths and you know divorces etc. etc. And I told her one of the main things that bothers me, that I've become anxious about is the, is the sweating issue and it bringing back all the memories. And the sort of thing that we do is we sit down and for probably three quarters of an hour she talks me into a relaxed state where I'm still in control of everything that I do but it's in effect getting through to your subconscious and relaxing you and teaching you things to do if you're becoming stressed. Then we talk through various images, relaxing images, laid by the beach etc and remembering to do this sort of thing and think about these things if you start to feel as though you're becoming a bit anxious and you find that you know it does relax you.

So if you start to sweat and you start to remember how you first found that you had cancer then you start, then you start to think of nice things, other images?

Yeah I just try and take a few deep breaths and relax a little bit and think of different things, things that you know make me feel happy as opposed to the things that remind me of what had happened previously.

And that's beginning to help is it?

Yeah it is yeah.

 

Says that he wished he had had counselling while in hospital but he did not know that it was...

Says that he wished he had had counselling while in hospital but he did not know that it was...

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I'm probably not the best talker about emotional things anyway er but one thing that would've been useful would have been somebody to be able to talk to at the time. And personally I found that side of it lacking. Er as it turned out counsellors were available but perhaps not publicised enough. So it was only after I'd had the all clear that I realised that there was you know any sort of counselling that was available, I sort of discovered it more by accident than anything else. Having said that you know that's not any criticism of the hospital because they were absolutely fantastic with the care that they showed. I just think that perhaps if the counsellors made themselves available while you're in the hospital, okay you might decide not to use them but I think it would be something that would help you get through it. And certainly after the event I had a lot going on outside of being ill as well at the same time and you know it became a very stressful.

 

Thinks he should have taken out critical illness cover before he became ill.

Thinks he should have taken out critical illness cover before he became ill.

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Have there been many cost implications to you, I mean you said you have to give up, how long were you actually off work or were you sort of doing it intermittently because you were working  at home?

Yeah I worked all the way through it and for 5 months, I was in hospital for 10 days a month and probably not working very many hours, instead of a 37 hour week I was probably working 16 hours most weeks, or you know 20 hours most weeks.  And bearing in mind I was paid by the day as well, obviously there was a cost equivalent to that.

You say you were working those hours when you were home, not when you were in hospital?

I worked in the office, I went into the office and did the, you know the 15 or 20 hours a week that I was doing, I worked on site in [place]. yeah.

Oh very good, it must've been difficult when you were...?

Yeah one of the things I hadn't done was take out any [insurance], because I was, you know I'd only been self employed for a month or so when I started being ill, Any cover, that might have been a wise thing to do really, to take some sort of critical illness cover.

Has it affected you for insurance purposes now?

Yeah er for obvious reasons because of the medical history I wanted to make sure that if there was anything in the future that I can be seen fairly quickly. So I tried to join a large private medical organisation and they refused to take me because of the medical history of the cancer.

Have you tried to do any other insurance or life insurance or anything since then?

Yeah I found another company that will give me some health cover

Oh good.

Yeah, but I'm pretty much snookered for stuff like life cover, yeah, it's difficult.

 

Tells men to return to the doctor if they are not satisfied with the diagnosis.

Tells men to return to the doctor if they are not satisfied with the diagnosis.

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But the main thing is that if you are worried then you know go see somebody. And not only that if you're not happy then go see them again, don't put off by being told that there's, that the dull ache is you know, "Here's some antibiotics." Because I've found that doctors know less than, or GPs should I say have learned from me because I've been able to tell them the sorts of ailments that I started with and they've been quite you know willing to listen and learn as well you know they can't know everything. So yeah, don't be put off by three courses of antibiotics, if you're not happy then, you know, keep going back.
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