Interview 08

Age at interview: 33

Age at diagnosis: 26

Brief Outline: Testicular cancer (teratoma) diagnosed in 1995, with secondary tumours in abdomen. Orchidectomy followed by four cycles of chemotherapy (each cycle over three weeks with 6 days in hospital).

Background: Quantity surveyor; married, no children.

Recalls the shock he experienced when he was told that he would have to have a testicle removed.

And I think I sat at work on a Tuesday and the phone rang and a doctor rang. It came through from reception, rang me, said that there was a bed ready for me on Thursday and when I asked what that was for he said "To have your testicle removed." So I went straight in.

What were your feelings at that stage?

At that stage I said "Right okay," asked him what time and everything and he said a letter would be coming through the post that day. I put the phone down, got up, went into the toilets where I worked and cried. I remember saying, why me, at one point, I think when I put the phone down I said, why me, but I remember getting up and going into the toilets and crying. I was working in an office with 7 chaps so it was, I was surrounded, wasn't on my own in an office where it wouldn't have been so bad, but I was surrounded by people. And although I'd worked with them for a long time it's a different kettle of fish when you're talking about that sort of thing.

Did he give you a diagnosis over the telephone?

He didn't give me anything he just told me that I was going to be having an operation on Thursday morning and it was to remove a testicle. And nobody had mentioned it up to that point at all.

Awful.

So I was just thrown in to complete shock. I went to the toilet, cried my eyes out, came back to my desk and I carried on I think for some strange reason.
 

Explains why he had a Hickman line installed in his chest for chemotherapy.

The first lot of chemo I was in a ward with 4 other guys, 2 guys in their 50s walked in with brain tumours, er and obviously that first week they got progressively worse. The needles weren't doing me any good at all, one of them actually didn't go in the vein, it was in my flesh. And I was, I don't know why, but you get used to levels of pain I suppose and I was rocking about on this chair with a cloth round my wrist and my Mum came in and asked, she knew straight away there was something wrong, took it off and my wrist had swollen up because it was going where it shouldn't be and I'd not said anything. I think then they took one out and it took another 5 attempts to put another needle in. And it was at that stage that one of the nurses came to me and said, asked me if I wanted a Hickman line fitting. And a Hickman line basically is a tube about a foot and a half long I would imagine that goes into one of your main veins, one of your main arteries by your heart. And instead then of putting a needle in you every time this tube has just got a screw cap on it basically and they fasten the chemo up to it, screw it up and it goes, and it's taken through your system. So there's no, there's no needles involved whatsoever, which was a lot better for me. 
 

Recalls that he was advised not to drive for two weeks after the operation.

I remember being bent double really up until the Saturday when I went home, I was still walking very slowly. And they tell you not to drive for 2 weeks because obviously the force of breaking [the car] is likely to send a shock wave up your leg; that the first area it hits is your groin. So I was off work for 2 weeks, I remember going into work, probably after the first week, just to have a chat with people really and I was chatting to everybody, it wasn't just the chaps I was chatting to, I was chatting to all the girls, the secretaries and everybody. It was a fairly small company and I knew everybody and I wasn't embarrassed by it. I mean everybody; every chap has got them so why be embarrassed by it.
 

Recalls that he was constantly sick during the chemotherapy and lost a lot of weight.

I was constantly being sick by that stage, just couldn't get the anti-sickness tablets or the drugs right to stop me being sick, I was constantly being sick. And I think it's probably, that was the point when the weight started to drop off. Overall I lost a stone and a half and that was basically because I didn't eat, I stopped eating. The food used to come in the food trolleys at 11 o clock and the waft, the smell would come down and as soon as it reached me that would be it, I would start being sick. And so there was no point in bringing me food, there was no point bringing anything anywhere near me. People started bringing me bits in, but I was just, I was ill, that was it I couldn't eat. And I think at the finish I was on Weetabix and cornflakes for breakfast, dinner and tea, that was the only thing I could eat that actually stayed down, I don't know why. I don't like Cornflakes now but I still eat Weetabix, but they managed to stay down. And I actually got the nurses at the finish to close my door before the food trolley came down and open a window to try and stop the smell from getting through and making me ill.

Recalls lack of communication immediately after the operation.

And then the surgeon came to see me and he came and stood at the foot of the bed, shook his head and tutted. And it was probably only seconds but to me it seemed like a lifetime, just shook his head and tutted and that was his diagnosis that I'd got cancer. And I was lying in a hospital bed, right by the window, 4 or 5 floors up, and thought well that's fair enough then we'll jump out now and finish it because I must be riddled, I must be dying from that diagnosis. And he went through it, he then took my parents and my girlfriend to one side, drew the curtain around the bed, walked them through the ward, across the corridor and into another room and gave them a different story but still started with the same scenario of shaking his head and tutting.

What did he actually tell you?

He told me that I'd got testicular cancer and that was, that was it. But by the time he'd told me that my head had already gone because he'd stood there shaking his head and tutting at me so I thought I was riddled and that was that. Then he gave my parents and my girlfriend a different story and they came back. He went and that was the last, I never saw him again, that was it.
 

Describes how his worry before each check-up appointment decreases over time.

So once a month you go back for a check-up. Two weeks before you go back you're dying again, cancer has come back again, I don't feel well, it must be cancer, I've got a pain there it must be cancer, everything turned into cancer regardless of what it is. You go for your check-up, they take a blood test to check to see your cancer markers, to see if they're, what level they're at and a chest x-ray to make sure there are no shadows another lump of cancer anywhere. You're given the all clear again and I go home. Two weeks after I'm given the all clear, I'm fantastic, fine, everything is great again, brilliant, I'm living, I'm alive, cancer has gone. Then 2 weeks before you go for your next lot you're back down and life goes like that in peaks and troughs for 3 years where you're nice for 2 weeks, nasty for 2 weeks, nice for 2 weeks. But as you get further down the line you start to get a little bit better and it perhaps goes from 2 weeks to 8 days [before the check-up] before you start to panic and it goes, it spreads further and further apart.
 

Describes the work done by his support group.

I've got 4 members on the group now, key members I would say that come every month and we meet up and they do sort of different roles within the group. We don't just have guys coming to see us, we go to hospitals to see them. We go to schools to educate girls and boys, we talk to both the girls and the boys because I think it's equally important that the girl finds the lump she drags him kicking and screaming and that works both ways if he finds a lump on her breast he drags her kicking and screaming. We go to colleagues; we have a display board that we take around businesses within this area and to health and fitness studios and we all work in a lot of different fields. So it's been going since 1998, we've got a help line now, we've got a web page now that people can go and see and they can call us. We've done TV and radio bits and it's, it's working. If we only help one person each year at least we've

Helped someone.

We've helped somebody.
 

Asserts that cancer changed his outlook on life, gave him confidence, and led to his work with cancer charities and support groups.

The long term effect now is that life is for living and stuff the rest, just bills and mortgages and everything else like that can, they can whistle Dixie for it because you're out to live now. It changes your perspective that way. If I get the sack tomorrow I get the sack tomorrow, I'm not bothered. I don't care any more as long as I'm alive. I mean it might be raining today but at least I'm alive and seeing the rain, I could've been dead. So that's one major effect that it's had on me I think. 

I think the major impact is just the work that I get involved with now with the education side and the communication side of it and I work with the hospitals and I work with Cancer Link and Cancerbackup in London, I do a lot of work now. Six years ago I would never have been able to stand up in front of 300 people and do a speech but now I can and I don't get concerned or worried about it or panic about it. So it's changed, it's changed my outlook on life and it just means I work, I do a hell of a lot of work with cancer now. And I do, I do sort of half marathons and things I'm always collecting for cancer, I'm always talking to people about cancer, cancer is probably one of the second biggest subjects in my life I suppose. It's taken over in a way if you like.
 

Points out that testicular cancer is highly curable and urges men to seek help quickly.

So what would be your message to young men now?

They just be aware that testicular cancer is out there and it might only be 1,700 cases last year and 86 men died, but there is a good chance of cure, a 98% chance of cure. If they catch it early enough, report it early enough, and get treated early enough, then 6 months down the line they'll be feeling as fit and healthy as they ever did. And there's no problem with one testicle or two testicles you're still the same person, everything still works and just not to be afraid or frightened of what's coming up. The longer you leave it the worst it can be.