Interview 12

Age at interview: 24

Age at diagnosis: 22

Brief Outline:

A lump was first found in the neck in 2000. After a biopsy, testicular cancer (teratoma) was diagnosed, and other secondary tumours found in lungs and abdomen; 5 cycles of chemotherapy (each cycle over 3 weeks, with 3 days in hospital); then surgery- biopsy of an abdominal tumour - found to be dead tissue.

Background:

University student; single, no children.

Explains that he first found a lump above his collar bone.

Okay I was 21 and approaching having finals at university. And I was sat in the library a lot, doing a lot of work, and one evening I was kind of reading away and I started rubbing my throat. And I noticed just above my collar bone that a lump had appeared. And it was about the size of an egg and it had just kind of appeared within what must've been like a few minutes pretty much. And I thought not much of it at the time really because it was kind of soft and smooth and wasn't painful to play with. And it didn't really occur to me that it was anything untoward for absolutely ages, I thought it was like a muscle spasm that had just kind of happened and would kind of vanish away gradually. And then about after a week I made a doctor's appointment because it still wasn't going anywhere, and I missed that because it still didn't seem too much of a problem. And then probably a week after that I made another doctor's appointment and went in, spoke to the GP. And she really didn't know what it was, she was kind of surprised.

Recalls that the doctors gave him plenty of information.

And they gave us plenty of information and encouraged us to go and talk and see what was happening. And given that the doctors were talking me through all the scans I was being given, I could see what was happening and what was likely to happen next. And then I think a week after that I actually saw the consultant and he took me through it again. We had like an hour; had like an hour appointment and he took me through everything that had happened so far, what was likely to happen. And then for the last half hour my parents came in and they got to ask their questions and we, he got to talk to us as a whole, kind of to say, "Okay as a family this I what's going to happen, your son is going to need this, you're going to need this and that kind of thing."

Describes his experience of the chemotherapy that he had to cure the spread of his teratoma.

And you just end up in this routine, whenever you go into hospital you need a blood test, and an x-ray, and you are examined by the doctor. And you have to wait once the blood tests have come back you know saying that you've got enough neutrophils to kind of, so they don't wipe out your immune system, you're not anaemic or anything. And they start making up the chemo and so you hang around for about 4 or 5 hours in the afternoon and then early evening they put a Venflon [a special needle] into your hand ready for the chemotherapy. I was basically kind of plugged in. And they start then filling you full of bags of various fluids and they pop it in and then you know that you can't unplug that for 3 days. It won't come out for any reason, if you have to bath, you have to go to the loo with it in, you can't change your tee shirt because that's too much hassle. Well, you can take it off if you've been sweating a lot or if you're feverish or anything, but then yes solidly kind of 24 hours a day, 24 hours a day for 3 days you're sat with this beeping machine next to you. And for the first 2 days the Venflon stays nice and clear and empty and then it starts to get a bit bunged up with this, that and the other for the final day. So often the alarms, the pressure can get too high in the tube and it starts to kind of beep at you in the middle of the night because you're like falling asleep and rolled onto it or whatever.

Recalls that he found aromatherapy relaxing.

I had aromatherapy massage. I had three sessions of that. And part of that again is just you get to sit and talk to someone. All this stuff happens to you, and every so often you just want to like splurge and just talk to someone about what's been happening. And it's difficult to find someone neutral and someone you're not involved with at all. So you can like say so much to friends and family but every so often you just kind of need someone you don't know in the slightest. And so the therapist we just chatted and chatted for ages and that was like kind of outside of the aromatherapy itself, it was just really nice to have someone to talk to. And she sits you down, chats to you for a while and you go onto the table and she works up a mix that's, of aromatherapy oils that she think would be relaxing for you and will complement whatever is going on inside you. And then she gives you a really nice massage for half an hour. So I mean the way those therapies are presented they don't pretend for a second they can actually be involved in the treatment of the cancer but probably more importantly it just makes you feel really, really nice. Which is what you need when you've got no hair and you feel rubbish and you can't go to the loo and you haven't eaten.

Explains that he became very anaemic and was prone to infection as the result of the chemotherapy.

Over time the chemotherapy knocks out your immune system because they're kind of, you know they're cells that rapidly divide which is what a cancer is, which is what the chemo is aiming for. So you knock your immune system, you know it's knocked out so you become kind of prone to infection and your red blood cells aren't produced as readily and so you kind of find yourself being quite anaemic. And so after awhile, after chemo four, I was, you know all my blood was utterly wiped-out so I was very, very anaemic and I had no immune system. And that was appalling because I couldn't stand up and I was just kind of, to lie down I was fine and once I was resting it was no problem. I'd lie down. I'm fine now. But to actually have to walk, even from like the living room to the front door, to let someone in was such hard work. And it's just, it's just really difficult to describe how really severe anaemia feels. You just can't do anything and you're thinking, okay I have to like go and switch over the telly channel now, and it's like I've got to plan this and work out what is the most direct way of doing it is to stop too much effort. And then they gave me two bags of blood next time I went for chemo and you're fine, just like that, it's incredible. 

So I wish actually I'd asked at the time, you know, 'I feel weak and anaemic, can you just check out my blood and may be give me a blood transfusion'. Because the anaemia was bizarre and just, and once you've got the blood in you it's fine and you feel right as rain again. And I got an infection after chemo, three or four I think, because my immune system was just wiped out.

Explains how he banked some sperm in case he wanted children in the future.

And I haven't got a family, I'm not married or anything and like I would like kids one day and so they said because the chemotherapy can affect all the cells in your body it's best to have well made sperm now just in case the sperm producing cells are damaged by the chemo and all the sperm in future, you're left infertile. So they can ask you to bank some sperm. And you go up to the hospital and you talk to a very nice man about all your options. And they kind of send you into this little tiny room with there's a stash of provocative material and leave you there for 10 minutes to do your thing. And then they come back and you give them your little pot and you carry on your way. And that's like, it's just a bizarre thing to do. But again they've done it 1,000 times and they have men coming in doing it the whole time. And yeah and they kind of, they take, they have a quick look to see how many sperm you have and whether they're good quality and they store them in little tubes. So I produced 8 tubes and they always talk about how many tubes you've got in the liquid nitrogen I think it is and then I'm just waiting for IVF treatment. The thing is you can never been sure whether the sperm you've got after the chemo are going to be of good enough quality to actually you know lead to fertilisation. So probably if I do ever try for children it will be with the sperm that I've got stored up at the hospital. And I've got enough there, yeah 8 tubes is kind of 8 cycles of IVF so I get 8 bashes at having kids later on. But I have to pay, they give you the first year free and after that it's '50 a year to keep them stored which is nothing when it's like your children pretty much. 

Explains that chemicals in the blood are good indicators of new tumour growth for men who have had a teratoma.

And celebrations started and I had like three weeks of having fun. And in the first year after being in remission they give you a CT scan every 3 months and then you visit the doctor monthly for a blood test and an x-ray. And the blood test is probably the best indicator that something has come back because it's very, very sensitive to the tumour growth, the fact that these hormones are being produced. That's probably the best sign that something has gone wrong. And they check you ever year, every month for a year and in that period, that first year is the most likely period for it to come back. But I was fine with that and I'm now in my second year after remission and they check every 2 months and then your third year they check you every 3 months and then in your fourth year it's every 6 months and then after the fifth year it's yearly just to make sure it's kind of, have a general check-up, give you a general check-up. So, and that again becomes part of the routine. Every month you would go in, you'd go and see the receptionist you knew really well, chat to the people that you'd see every month there and it's quite, it's kind of a community feel.

Explains why he feels he has gained a huge amount from being ill.

And actually I gained masses from being ill. After I went into remission, the period ' 4 months afterwards' I was just kind of like living on a cloud, like, 'Oh my God, look at this, it's amazing, I'm alive damn it!' And I would say stuff like that to people and then realise how stupid it was to say, you know, "I was glad I had cancer because it really opened my eyes," and stuff like that.' But I did gain a huge amount from being ill. And although that kind of living on a cloud feeling is not so much there now, every so often it's just kind of, 'I do yeah get a little something extra and appreciate life more'. That sounds quite cheesy and rubbish but you just are aware that it [life] is a bit fleeting really. So you make the most of it. I'm certainly less self-conscious now'. And you get that out of being ill in a kind of bizarre way. I said to someone once, "I'm quite glad I was ill," and they looked at me with disgust and surprise, like I was mocking all these other people that were ill and dying of it and I must be insane to say that, as though it's actually affected my mind that I should be saying something like that.