Interview 42

Age at interview: 22

Age at diagnosis: 15

Brief Outline: Testicular cancer (teratoma) and secondary tumours diagnosed in 1994. Orchidectomy and 5 cycles of chemotherapy (each with 3 or 4 days in hospital and two weeks at home). In Feb. 1995 major surgery (left thoraco-abdominal retroperitoneal lymph node dissec

Background: Student nurse; single, no children.

Suggests that his brother and sister had less attention because his parents were so preoccupied with him and his illness.

What was the whole impact of this on your family?

It affected my family a lot. Probably as much as it affected me. I've got a younger brother and sister who were pretty much put by the wayside and moved between family friends and other members of the family whilst I was in. And obviously my parents' focus was completely on me because I was so ill, and so they, they weren't ignored, but they were put aside. And my parents would get back from the hospital every evening and say "Hello, how was your day?" and eat a meal and then go straight to bed because they were coming straight back the next day. 

So it did affect everyone a lot.
 

Recognises the advantages of listening to other men who have had experience of testicular cancer.

So to have a website where you can go on and you can see people's experiences and find out a bit more what it's going to be like before you actually go and have it done is, would be an amazing help. Also it takes out the embarrassment of having to speak to someone down a phone line and then uncomfortable silences and stuff like that. You can see the person on the end, you can read what they've said or listen to it or see it and you don't have to have any interaction with them. You can just sit there and listen and make of it what you need to. Yeah I think it's great.
 

Describes major surgery to remove the lymph glands along the back of his spine.

At this point it's February and I've had all my chemotherapy and they decided that the cancer had shrunk enough that I needed to stop, I could stop the chemotherapy but not quite enough that my treatment was over. And they decided at that point that it would, the best thing to do would be to remove the lymph glands along the back of my spine which is where my cancer was and remove all the residual tumour. So I was taken away, 2 or 3 weeks after my last treatment, to another big hospital and booked in for my operation. 

And the consultant or the surgeon that I saw was, was very, very good. I spoke to my other consultant about him and he is world renowned for this particular operation that he's researched and he's developed himself with his team. And he came down and spoke to me and told me what I was going to have done. And it was a bit of a daunting prospect really because it wasn't like the first operation, this was a very major operation. It involved 6 hours of operation under general anaesthetic, it was a very large scar, 18 inches and the removal of a rib and the collapsing of a lung to actually get to the site. Because obviously where the tumour is you can cut straight through, you can go through the front and go through the stomach and everything which causes complications. You can't go through the back because you've got the ribs and the spine in the way so he's found a way of doing it through the side which involves a rather weird shaped scar along my side. But they go in and they collapse the lung, remove the ribs so they can get in there and then remove all the tumour.
 

Describes his experience of the intensive care unit after major surgery.

I had 4 units [of blood] before I went in and then being such a major operation I did have going into the double figures of blood units transfused whilst I was actually in there. And then I came, woke up from that and I was in the ICU [intensive care unit] section of the hospital being monitored very, very closely.

I was linked up to heart monitors and various different breathing apparatus and pain management systems. And spent the next 6, 7 hours just lying there not really being able to move much, being in quite a bit of, not pain but discomfort from this large scar that I had on my side. And not allowed to eat or drink anything again which really annoyed me. I was only allowed to, I was allowed to suck on ice cubes and little foam lollies with water in. So my Mum spent the next 6 hours doing that for me. And then that morning they decided I was well enough to move back down to the general ward. So I was taken back down there and given a personal pain relief system which was very, very good. Which involved a needle in my arm and going through to a box containing the drugs and a button that I could press when I was in pain to administer a dose of pain killer, which was very good, it really helped.

The scar took probably 2, may be 3 weeks to completely heal over. I had stitches in that that were removed by my GP. And then after the operation, approximately 6 weeks later I was discharged from the surgeon's care,who decided that everything was going okay.
 

Explains what life was like in hospital when he had chemotherapy to cure the spread of his teratoma.

How many weeks, how many sessions of chemotherapy did you have to 

have?

I had 5 sessions. The first 2 were a particularly strong form of the chemotherapy and then the third one was a much lighter form. The first 2 were continuous drugs going in all the time, through the pump overnight. The drugs are administered through cannulas into, straight into your blood stream so obviously it can be quite uncomfortable lying in bed. You have to keep the same position and then you've got nurses coming out, in and out every half hour, three quarters of an hour to check that everything is running through all right. So it was quite uncomfortable. But then the third treatment was only on during the day for a couple of hours and then I was free to wander round the hospital or have friends round. I mean even when I had the line up I had friends and family to visit and that sort of thing. And I used to scare the living daylights out of the women in the Comfort Fund shop at the hospital because I was told that I could, as long as I was sensible, I could walk round the hospital with my drip stand. So of course off I went into the shop and turned round and very politely asked the woman behind the desk if she minded if I plugged my drip stand in whilst I looked around. And she was aghast "What on earth is that, are you sure you're supposed to be in here?" It was quite amusing. And I used to go down to the canteen, the staff canteen because the food in there was much nicer and I'd sit with the doctors and chat to them whilst my drip stand was going and I was eating my food which always amused the doctors. So yeah, I tried to be as normal as possible I suppose whilst I was in there.
 

Recalls that the consultant explained everything and made him feel better.

So as my consultant put it, it was a tumour the size of an orange in my back, which was causing this pain my back. So it was another shock at that point, to think right I've had all this done and I knew there was a possibility that I'd have to have more treatment, but to find out that I had another large tumour in my body as well was a bit daunting to say the least. So the week, the same week that I got back from holiday I was taken into the hospital that I had my treatment, and met the consultant that treated me, and he explained exactly what was going to happen, how the treatment worked, his success rates which were very, very good, it was a very high success rate for treating and curing this cancer and really, really made me feel very at ease. And I was obviously still very, very scared but he did make me feel a lot better about it than I would have if I'd just been told, he did explain very, very well what was going to happen.
 

Recalls that one doctor spoke to his parents instead of to him, and that nurses were better at...

The communication between you and the doctors and nurses how was that?

Most of the time it was really, really good. I found the nurses very easy to get on with, slightly easier than the doctors, they seemed to know a lot, well they didn't know a lot more about it but they were a lot better at communicating it than the doctors were. There was only, I only had one really bad incident with a doctor, in fact a consultant when we were, me and my parents were sat in the room talking about something and the consultant turned to my mother and said "So does it hurt when he does this?" And my mother looked back at him and said "I don't know why don't you ask him, he's sat next to you." And the consultant couldn't quite get his head round talking to a 15 year old as if he was an adult.
 

Explains that having cancer made him think about his life and reassess what he wanted to do for a living.

I took the rest of my GCSEs the next year and got good results in all of them which was amazing considering I'd been predicted reasonably bad results before my GCSEs. Before I was ill I was predicted quite bad results and they didn't think I was intelligent enough to go on to do A levels and that sort of thing. And then what with the treatment and what I'd actually had it was, it made me think that may be I should be trying to make a bit more of my life really. So I worked hard for my GCSEs after that and got good grades. Went on to do A levels, did my A levels, worked for a couple of years and am now a student nurse. So I thought for a while what I wanted to do with my life and then thought about all the treatment and good work and support that I got from my nurses and so here I am, I'm training to be a nurse. So I've been invited by my consultant to may be go and work with him for a while in the wards down there, so yeah.