Interview 32

Age at interview: 26

Age at diagnosis: 24

Brief Outline:

Born with only one testicle. Testicular cancer (seminoma) diagnosed in 2000, followed by orchidectomy and hormone treatment. Aug. 2001, laparoscopy to check there was no undescended right testicle; no secondary tumours found. Sep. 2001, radiotherapy to prevent recurrence. Then lump found in groin, a malignant lymph node. Surgery to remove node, followed by chemotherapy.

Background:

Chef; single, no children.

Explains that he delayed seeking help because he feared that treatment would mean the end of sex.

Okay, I first discovered I had testicular cancer 18 months ago. I found, I found one morning whilst in the bath I realised there was a lump. And I completely ignored it because, mainly because I was completely ignorant to what testicular cancer was and I was really afraid of basically losing my sexuality, I was afraid that they would obviously have to cut my testicle off. And it would make more sense if I let you know that I was only born with one testicle, and I think I was so afraid that they would cut my testicle off and I would lose my sexuality that I managed to completely block it out of my mind. And it was easier when the lump was very small, it was a very slight lump. And I did notice that I actually drank more and I think that was to put it out of my mind. I went for a lot more sociable drinks, because I'm not really a big drinker, but I went for a lot more drinks and I managed to put it out of my mind. And obviously it grew and I can't believe how stupid I was because I let it go for six months until it got really, really big. And I went to my GP finally after talking to my brother. One night I went to the pub with my brother and I let him know that I had, that I was sure I had testicular cancer. And even though he was sure it wasn't I think just saying it out loud to someone else meant that I definitely would dealt with it. And so I spend the night in the pub with my brother talking about it, got very drunk and the next day I realised I had to go. So I went to my GP.

Recalls that after the initial diagnosis he was mainly concerned that he would not be able to have sex again.

And the immediate blow was, in fact it actually felt like a punch in the chest, because we, still at this point I didn't realise any, I didn't realise any of the sort of, any of the medication they had like testosterone injections, I didn't realise that these things existed. So immediately, my immediate thought was well basically that it [sex] was just all over, you know that I was going to lose the power to, well just lose my sort of manhood and I just thought it was all over. But the doctor saw, I mean I think he saw the look on my face of just complete horror and then of just, you know complete sadness. And I don't cry, I've yeah you know I've cried like five or six times in my life and you know this day I just broke down. And the doctor, I mean I pulled myself together in about five minutes and er the doctor sat down and he spoke about you know testosterone injections or testosterone gel that you can rub on your body.

Describes his shock and devastated feelings when he heard that the cancer had spread to his groin.

But yeah, he told me over the phone that they had tested it [a lump in his groin], and it was cancer, and that I needed to arrange to sit down with him and just arrange the chemotherapy and then, yeah, and it was just devastating, I mean it was really, it was really devastating because up until then it had all, it had all been, to me it had all been about the sexual side of things, you know it was just before when this all started I was just worried about losing my manhood and I never really thought too much about mortality. And now because this had nothing to do with that side of things and my life was sort of pretty good, do you know what I mean? I'd, you know I'd just got a job as well, I'd just got a job, I'd gone back to being a chef and I'd been working for about three weeks, and I just couldn't believe it.

Believes that it is better if others acknowledge that treatment may be tough or unpleasant.

I resented anyone trying to say something optimistic to me. I think, and sometimes I genuinely believe this now, sometimes I think the best way to console someone is to just agree with them, not to try and say, "Look it will be alright."

I felt sometimes when people were making light of it, I was like there's no need, I want you to go, "Jesus that's heavy".

I suppose everybody is different, everyone needs different ways, but I definitely found that people trying to say it was going to be alright didn't [help]. And one person, one mate of mine would just sit there and all he said was "Jesus, I just, I don't know mate, that's going to be a nightmare." And I was like, it just felt good to have'

Somebody to acknowledge how you felt?

Yeah someone to acknowledge how I felt, who didn't pretend to know anything.

I knew that I could get a hat; I knew my hair would grow back [after chemotherapy]. What felt better was someone looking at me just going, "Jesus mate you've got your work cut out for you, you know I don't know what it's going to be like but I bet it's going to be a bloody nightmare."

You know I needed someone to, and to acknowledge it was going to be tough and just to listen. But it was quite hard to find, you know you pretty much found the minute you spoke, and I understand why, I'd probably be the same, but people automatically thought that you were looking for some sort of an answer and would try and say something optimistic.

I always got a little bit angry so I stopped talking about it and I found that was better you know.
 

Recalls that although radiotherapy is painless, he felt a vibration in his body.

It took about 15 minutes to wait for your turn and then it literally, I think it must've taken about one minute, from getting into the room and leaving. I'd lie down on a bed, they align the machine above you, take one, give you one blast above, above you, and one blast under you and the whole thing must've taken, may be a minute is an exaggeration, may be two minutes, a minute either side, and then that was it and you didn't feel it. Oh one time I was sure, I asked the guy, I said I thought I felt a vibration in my body and he said some people do, you really can't, but some people do. Whether it's your mind, I was sure I felt something sort of flutter you know like I could feel it almost like, yeah but and then I made this comment to the guy and he said that some people do say that. But as far as you know you really shouldn't be able to feel anything, he said there's nothing there to feel, so that was strange.

Explains why he decided not to consider having hormone replacement therapy in the form of a gel.

At first I wasn't that happy because I researched a gel, because it was a year ago I had a phobia of needles, which has definitely gone now. I mean I'm a pincushion anyway but I had this phobia of needles and so I researched about the gel. And this gel you rub it on yourself every day, but you have to be careful when you're rubbing yourself that if you hug someone or shake someone's hand that you don't get any on him or her, because they could actually absorb the testosterone. And I was reading this and that just freaked me out even more, I was like, oh right that's your idea of a cure, that I rub myself in this gel and wrap myself in a suit and don't touch anybody and that just you know it, well it just sounded ridiculous, it didn't sound like a good cure. 

Where did you find that information?

I got that from the hospital. 
 

Explains that testosterone injections have allowed him to have a normal sex life.

Well what I'd like to say is that the injections, the testosterone injections have worked really, really well. I was given a list of side-effects that testosterone injections would have and apart from the fact that you do get the sort of sporadic erections a little more than you would otherwise, I haven't had any, and my sexual drive, it's quite ironic, but it's actually I think for me it's actually better than it was, and sex has not lost any of its, you know its beauty, it's still great. And yeah I've been quite impressed by that and the injections.

I mean they say that these deep intramuscular injections are very painful but you get used to them and I have one every three weeks and it's not really painful. I mean occasionally you know the injection can go slightly in the wrong place, or hit a more tender part of your muscle, and you may have a numb leg for like a day but it's not a big deal at all, and like I said, I've just been really impressed, because my testosterone levels were depleting quite rapidly, because I didn't deal with my cancer and I only had one testicle. 

I mean the freakiest thing was that I lost my sex drive, well not completely, but I lost a lot, and yeah, I've just been really impressed with the testosterone replacement, it's really worked well.

The only reason I'm considering the capsule is because I want to go travelling. If I wasn't considering going travelling then I would be happy to just carry on having injections. But I'm not sure about taking testosterone injections abroad, especially if you're going somewhere like Thailand

And the capsule under the skin lasts three months?

Yeah the capsule under the skins lasts four months.

How soon after the operation could you start taking the testosterone?

I started the testosterone very soon after the operation, I think it was two weeks after the operation, and it took about eight to ten weeks to reach the testosterone level that was sufficient for my body, and when it reached it, it was great to feel that again.
 

Recalls the minor side effects he had for a short while when he started HRT injections.

Have you noticed any adverse side effects of the injections?

No. At first I thought I did, at first I noticed, I thought I was getting more spotty through the injections and I did have, my penis felt numb at first. But that only seems to slightly happen in the first month, now I don't feel any adverse reactions. And at first I felt, or at least I thought I felt that my sexuality was slightly depleting by the end of the three week period, but now I don't even find that, I find that it's constant when I have injections, my sex drive seems to be as strong as the day before I have my next injection so

Oh good, did the doctors say there might be any adverse side effects?

Yeah the doctors they gave me a list and the side effects were, there was a long list, I can't remember them all but you know headaches, er you know it can be painful during sex, not extremely painful but you can get painful sensations. And I haven't had any of these side effects.
 

Explains that one of his false testicles became infected and was then removed.

And so when they removed the cancer they implanted two prostheses [he was born with only one testicle], but it got infected. I was in hospital for three days after the operation and I think it was the fifth day after I'd been released from hospital I was at home and the swelling never went down, it was huge. I basically had a small, the size of a small football between my legs. And there was a small cut in the skin, over the prosthesis and as days went by the cut got bigger to the point where one day, one day I was at home, I was in bed and there was a lamp at the foot of my bed and I was looking down at this huge swollen, like a swollen prosthesis; and well it was the skin, I think it was blood and water but I could see the prosthesis coming out and it was see-through. 

And it was a nightmare because I literally had to hold it in. And I rang up my GP, because they have someone you can call all night and they said, "Look it will probably be alright, it's just swelling from your operation." And I explained that I think what I could see was actually a fake prosthesis trying to get out, basically being forced out, and I was told not to worry too much but to keep a Band-Aid on it and go to the hospital in the morning.

So I did that and I made a mistake, I had breakfast before going to the hospital because I was only in the hospital for 10 minutes before I was, I think it was 10 or 20 minutes, I was operated on straight away and my prosthesis, one of my prostheses was removed. It's quite ironic, the one that was removed was the one that I'd had, the cancerous one, it was my left hand side, and the one where I'd never ever, ever, ever had a prosthesis was fine. So I had that one removed and I was in hospital for another five days whilst they put a, basically they put a straw in the hole to drain the 

Like a drain?

Yes they put a drain in to just drain all the sort of bad blood and like the infectious blood. And with the beauty of hindsight I would've had the operation and had the prosthesis put in later. 
 

Explains why he decided to have two false testicles.

Yeah I did feel threatened for my masculinity because I actually had, I had a chip on my shoulder at school about people finding out that I had one ball and it was quite a strong chip on my shoulder. I think that's why I found it so hard, the idea when I got cancer, I mean may be it would've been different for me if I'd had two, and they were just taking away one you know.

Because you know you can, I know for a fact you can live a normal life on one, you get the right amount of testosterone, you can, things are very normal. But I remember at school when it came to like taking showers and stuff I was really quite paranoid about that. So when it came to someone offering you know to have two [false testicles] I thought, I think I was bringing in that sort of insecurity of like my childhood, I thought about it, oh wow, I can make it alright now by having two. So I think yeah my masculinity was definitely threatened. Because I know as a child just the idea of people finding out I had one and may be questioning my masculinity that "Oh you've only got one testicle, you know you're not a real man," you know the whole playground tactics, I was always worried about that. And so yeah when he [the doctor] said that, [that he could have two false testicles], I was like yeah give me two, anything to make you know strong like man, two testicles. Now it's quite, I just don't know where it all came from, because now like I said, I wouldn't even mind if the prosthesis that I have wasn't there because at the end of the day it's purely, you know it's just, it's not part of me anyway you know.

Says that it is important to sort out financial arrangements such as benefits before starting treatment.

Yeah, I had to leave my job and because I'd only had my job as a cook for three weeks. I'd never come off Incapacity Benefit, because you are allowed, when you claim for such a long time, when you go back to work they allow you to still claim for a few weeks, so it was easier for me to just stay on it. So I stayed on Incapacity Benefit.

Tell me, do you mind me asking, how much is that, I haven't a clue?

Oh it's, I was getting £48 a week.

Not much to live on.

Not much yeah, I mean that's what I've often said, yeah, it's not much. I think that there should be definitely differences made between someone suffering from cancer, trying to eat well, and someone who's just broken their toe.

So to survive you just get £48 a week, and then you get your house?

Yeah I got £48 and you get your rent paid for but not all of your rent is always paid. So basically I think I had £20 for food a week. And I also got Council Tax Benefit so my Council Tax was paid but it wasn't amazingly good. But I mean the first thing I thought was, 'Just make sure that's [financial benefits] all at least working'.