Interview 10

Age at interview: 36

Age at diagnosis: 29

Brief Outline: Testicular cancer (seminoma) diagnosed in 1994; orchidectomy. No evidence of secondary tumours, but 15 treatments with radiotherapy to prevent recurrence.

Background: Cabinet maker; single, no children.

Describes what it is like to have an ultrasound test.

Can you describe how it was to have the ultrasound?

A little bit embarrassing actually because you're sitting there with a lot of ladies who are pregnant and you know you have to sit in one of the hospital gowns and one of the dressing gowns that they give you which don't fit (laughs), they're tight everywhere. And so you, again you're feeling a little bit foolish and you're sort of like sitting there thinking I wonder, you know I wonder what they're thinking about me you know.

Mm.

And really not understanding what is going to happen as well. So it's frightening and you know when I had the ultrasound didn't really know how they did it and, but it showed up on the screen what, I could see

Can you explain in detail how they did it, for other people who may be in the same situation?

Oh right yes. Well basically it's the instrument they use looks very similar to an electric razor, it's got a lead coming out the back of it and then it's got kind of like a, it looks basically like an electric razor and they just move it around. It doesn't make a noise or anything. They put a lubricant on the area that they're checking and they scan one side and then they scan the other. And it's not discomfort, no discomfort at all, embarrassing (laughs). And, but the, I could actually see the screen and even I could see that there was a difference in the two testes.
 

Recalls his feelings of shock, depression, and isolation when diagnosed with cancer.

Well initially it's a great shock, your whole life is just turned upside down. You think you're going to die for a start, and it doesn't matter what the, what the medical people tell you, that it's 98% survival rate, or 96 whichever percentage they quote, because the only thing that is going through your mind is that you're going to be the 2 or 4% or whatever that don't make it. And that's normal I presume, everybody seems to, everybody I've spoken to seems to think that way. And you feel very isolated, you feel slightly cut off from everybody else, because everybody else is just carrying on normal life, and you've got this thing hanging over you. Every emotion as I've said before seems to run at the same time, you seem to be elated in a strange sort of a way, you're shocked, depressed, everything, everything seems to run at the same time, and it's very difficult to explain how you feel. Anybody who's been through it will know exactly what I'm talking about.
 

Recalls that he did feel an unusual sensation during radiotherapy.

And when they started the machine I did actually feel, it felt as if I was in a static field, which was a bit of a shock because you know if they say "You don't feel it," and then you do feel something it's (laughs), you know God is it working right or something you know (laughs). But er and that was it. The treatment probably lasted about 30 seconds, it seemed like a long time but it's not, it's actually only a few seconds. They, come from above you to start with and then the machine rotates underneath the table and they come from underneath, so they seem to do both sides of the torso. And I felt a little strange afterwards, couldn't really describe how it was, I just felt different to how I did before the treatment.

Explains that he tried acupuncture for his indigestion but that he found the dietary advice was more helpful.

Everything I ate gave me problems. I couldn't work out what to eat, what not to eat, and you know all the usual things that give you indigestion did, and everything that they say 'eat', you know gave me indigestion as well, so it was a bit of a nightmare that was. 

So have you tried any other complementary therapies?

I tried acupuncture. This was where I basically got, where the dietary thing started off, of looking at how I eat. Because my GP was giving me these tablets, he was very good. He was the one who actually suggested I go for acupuncture. You know he said "Give it a go, it might work."

And where do they, what do they do for the acupuncture?

Well they inserted needles at points all over the body. Personally I don't think it worked, not for me, whether it does or not I really don't know.

How many sessions did you have?

Oh crickey I had 4 or 5, something like that. Well at '36 a session it's expensive. I was in a position where I could afford to have that done but a lot of people aren't. But the, it was a Chinese doctor, a Chinese practitioner who did this. But what he told me was more important than what he did. He was talking about what to eat, and that was what set me off on the, looking at how I could improve the situation.
 

Describes the indigestion he suffered as a long-term effect of radiotherapy.

Has it left you with any long-term affects?

I had a lot of problems after the treatment, with food. To start with I couldn't eat very much at all, I suppose my stomach had shrunk with not taking in very much, I don't know, but I could only eat small quantities of food. And I was getting very severe indigestion afterwards, every time I ate. If I ate I got indigestion, if I didn't eat I got indigestion

Oh dear.

And I found that if I eat, if I eat food in small quantities, but very regular, rather than sticking to meal times, I was eating when I was hungry, but very small amounts that seemed to help. You basically listen to what your body is saying, I think is what it was about. And that seemed to help but when you finish the treatment you feel very tired as I said before and, but as soon as they stop administering the treatment within a couple of days you're feeling a lot better. And the recovery is quite, quite dramatic, you suddenly, you feel as if you're taking off you know it's not like a, it's not like a bug or something that you've had where it may lower you, you know knock you down for a few, for a while and still feel awful afterwards. As soon as I stop having the treatment it was an improvement.

That's good.

And you seemed to progress brilliantly. But then I got to a point where it didn't seem to get any better, I'd sort of like reached a plateau and I was getting problems with the, you know with the indigestion and that and it was pretty bad actually. Everything I ate seemed to give me problems, I couldn't work out what to eat, what not to eat and you know all the usual things that give you indigestion did and everything that they say eat you know gave me indigestion as well, so it was a bit of a nightmare.
 

Describes the terrible sickness he suffered after radiotherapy.

And I drove home and sort of like had my evening meal as I usually would and, but all the time I was starting to feel different, it's very difficult. It's kind of like sunstroke, started to feel a little bit heady, and tired and a little bit off sorts really. And that got progressively worse until about 8 o clock when I was starting to think that I was going to vomit and so I headed off to bed at that point. And then I, I was lying in bed not feeling too good at all and then I started vomiting and that just carried on all evening.

Oh dear.

And it got that bad in the end I actually ended up sitting on the hallway outside the toilet because it was no point in going back to bed because I'd be back there within a few minutes. So I just sat outside the toilet (laughs) and tried to get some, tried to calm myself down and relax a little. That lasted for a few hours until obviously I'd got rid of everything and I had a night's sleep. I felt absolutely dreadful in the morning and didn't go into work because I really didn't feel well enough to go. I'd got another treatment again the next day and so I went in, went again, went along again in the late afternoon, told the staff what had happened the previous night and they said "Oh you shouldn't have had a meal." I said "Well nobody told me." I mean it probably would've been a good idea not to eat something but just don't think about that sort of think you know. You're told that it doesn't affect you and that you'll be able to carry on as normal.

When are you supposed to eat then?

Well they sort of said probably not, a big meal is not a good idea you know. 
 

Says that initially the doctor discouraged him from having a prosthesis and now he would find it hard to take time off work.

Now we talked about the prosthesis, did you have any more  thoughts about that?

I did ask the question, I think it was probably about a year or so afterwards you know, I sort of said, "There was talk of a prosthesis at one point," and he said, "Well we don't really like to fit them because they don't, they're not always successful." And basically he tried to talk me out of it. And I did ask again later, only a couple of years back, and you know he sort of like said, "Well yes, we'll do if you want one, that's not a problem but," he said "You're going to have to go through the same operation as you had to remove the original testicle." And you know I mean I can't afford to take time off work, I don't get paid when I'm not at work. So it would mean at least 2 weeks off work and then quite a lot of discomfort for a couple of months you know until everything is settled down again and it really didn't seem worth it.

Says that the support group helps to put his fear that the cancer will return into perspective.

And the one thing that I've got from dealing with the group is that it's very therapeutic, you know it puts things into perspective. You see things that, you know the fears that you've got that it will return or whatever, you suddenly realise that you're not the only one feeling like that, all men' you know. I think anybody that's had cancer their main fear is that it will return and you was lucky the first time but will you be lucky the second you know. And it's just, just confirmation that you're not the only one who thinks like you are and you're not crazy you know.
 

Says that the support group helps to put his fear that the cancer will return into perspective.

And the one thing that I've got from dealing with the group is that it's very therapeutic, you know it puts things into perspective. You see things that, you know the fears that you've got that it will return or whatever, you suddenly realise that you're not the only one feeling like that, all men' you know. I think anybody that's had cancer their main fear is that it will return and you was lucky the first time but will you be lucky the second you know. And it's just, just confirmation that you're not the only one who thinks like you are and you're not crazy you know.
 

Explains how to conduct testicular self-examination.

Well basically the way to examine yourself is the best time to do is when you've had a shower or a bath because the scrotum, the skin is loose, so the testicles hang down. And if you just rub them lightly between your fingers you can obviously feel through the skin to the testicle and it should be smooth. Round the back is the epididymis I think it's called (laughs) er and that is like, it's kind of like a tube affair. That is normal, if you feel that that is what that is. But a cancerous lump if you find one, is usually on the side or the front of the testicle. It can be on the back but it usually the side or the front apparently and it will feel like a raised area on the testicle itself. It will feel hard as well, it won't have the same sort of give as the testicle will have. And in my case it felt like a walnut shell, bumpy and rough, and if you feel anything like that you need to see a GP and get it examined and get an opinion on that.