Interview 34
More about me...
He went to see a private specialist who told him that he could operate that afternoon. The fact that he had testicular cancer only sank in later.
He went to see a private specialist who told him that he could operate that afternoon. The fact that he had testicular cancer only sank in later.
So went with Mum [cough] to the hospital to see this private specialist where I had another ultrasound and he examined me and within an hour he said, “Yeah we think that's probably a tumour. I'm operating this afternoon. I've booked you in round the corner”. And so I walked from his office to the hospital where I had the operation later that afternoon.
Ok. Which type of operation?
It was an orchidept, orchidectomy. So it all happened very quickly which was great and I couldn't really worry about it all I think.
Did he explain to you what he was going to do during the operation?
Yup. He said he was going to remove the testicle with the lump on it. Did I want a prosthetic testicle put back in? I said, “Yes”. So it went from there really.
Ok, how did you feel at that moment, at that time?
Pretty numb I think, probably a bit in shock. Didn't really know what was happening. I think I sort of felt that if it has to be done, it's got to be done and let's, let's get it over with. Let's do it as quickly as possible.
Ok. He used the word cancer or not?
No he didn't then. He used the word 'tumour' I think. I pretty much put two and two together but it wasn't until after the operation when I got home that it sank in that I'd had testicular cancer.
When I was told by the surgeon just before the operation in his office my mother was with me. He, I think described it as a tumour which my mother and I both understood. My granny passed away from cancer a few years ago so I think we both knew the word 'tumour' wasn't great. And the operation was literally happening a few hours later so Mum and I just got on with it I think really. Both very scared. Didn't quite know what happens next but we just knew that the operation was the first step. That's where the cancer was let's get rid of it before it spreads anywhere, as quickly as possible. And take it from there.
Ok.
It was afterwards at home, as I said, that it sort of, that the word 'cancer' sort of sunk in I think. It had happened so quickly beforehand I didn't even really think along those lines.
Were you scared?
Yeah. I immediately, I mean you do think about death and things with the word 'cancer'. My granny had died with cancer and so I immediately thought the worst perhaps. I didn't really know. And it wasn't until after the operation that we'd seen that it was stage 1 and so my prognosis was very good. It hadn't spread and so the likelihood that I would be fine. But I never expected it. Whatever happened to me as a young 24-year-old with everything going for me suddenly this wasn't sort of in my plan.
He developed hearing problems following his chemotherapy treatment but emphasises that this is a small side effect in comparison to having cancer.
He developed hearing problems following his chemotherapy treatment but emphasises that this is a small side effect in comparison to having cancer.
And I had one of the cycles and my ears began to ring terribly with tinnitus which got worse and worse as the chemo went on to the point where I spoke to my specialist and he had warned me this could be a, a side-effect but I didn't realise it could be this bad. And so we weighed up the options and he said as it is probably, your tinnitus might last six months to two years but if we carried on with more chemotherapy it might make it permanent. And he said, “Actually we've given you quite a high dose anyway. That could well be enough”. And so he said, “Look we'll keep a close eye on you for the next few years and take it from there”.
When did the tinnitus started, when did you notice?
I noticed it at the end of my week's stay in hospital. Yeah, I think, yeah. At, while I was in hospital it was, I could feel, sense it was sort of new, this ringing in my ears. And over the next sort of ten days it just got a bit worse and it was then when I spoke to my specialist, sort of what do we do next?
It developed quite quickly?
[Mmm] Yeah, I think so. I can't really remember what it was like beforehand in a way now, because it's always there but it's a small side-effect from having cancer I guess.
Has it improved or it remains the same?
I think it's remained the same. Perhaps I've just learnt to deal with it better. It's worse when it's quiet, say at night when I'm trying to get to sleep so I've been sleeping with music on or the television in the background. I usually have radio on in the background now. It just seems to sort of cancel it out. If I don't focus on it I, it tends not to bother me but it's when you're tired or stressed when it's sort of, it aggravates you and gets to you.
He saw the storing of sperm as part of his treatment, as something he needed to do.
He saw the storing of sperm as part of his treatment, as something he needed to do.
Did the specialist talk to you about the issue of fertility prior to chemotherapy?
Yes. I went to a sperm bank about five times before the chemotherapy started to store some sperm because there is a possibility that chemotherapy can affect fertility. I still don't know as yet if it has or if it hasn't. I've been advised to wait longer. But it's very nice to know that there is sperm frozen if I am infertile down the line. It was a good thing to do and a sort of a good back up even though I think the chance of me being infertile is pretty low.
And how did you find the explanation that the doctor gave to you, was it very kind of straightforward, easy to understand language?
Yes, yeah. They explained it thoroughly and clearly and made sure that I understood basically what was involved and the chances of perhaps being infertile etc. The thing with chemotherapy the sort of, they don't know that's half the trouble. Everyone's different, see how it was.
And what about the physical surroundings at the sperm banking. Was it sensitive?
It was a bit like an office building and it was a bit of a soulless place. I saw it as perhaps part of my treatment like the chemotherapy in the end. It was something that was worthwhile and I had to go and do. I'd just get it done because the quicker that was done the quicker the chemotherapy could start. We had to wait to start the chemotherapy until I'd stored enough sperm at the sperm bank.
Describes how the PICC line was inserted and explains why he chose this option.
Describes how the PICC line was inserted and explains why he chose this option.
I've never been great with needles and I didn't understand that chemotherapy is given intravenously. So that I wasn't too pleased about until it was suggested that I could have a PICC line inserted. So before my treatment I had a line put into me in the crook of my arm that went up through my veins and down into my heart because then the drugs can be pumped around you evenly. And that saved a lot of hassle. I had a tap at the end where the chemotherapy was given to me through drip bags and they could also take blood from it as well which was quite handy because if I was tired or asleep it meant they didn't have to wake me up to put another catheter in or injections or to take blood. They could literally just find the tap and twist it. So I think that was, I was pleased I did that in the end. It was quite uncomfortable having it put in but for me it was worth it.
What other options they gave you at that time?
You can either just have it I think administered normally where every time they give you a new drug they use a different vein and for blood tests as well they'd need to do that. Or they said you could have a Hickman line which I think is used for longer term chemotherapy and that goes in through the chest. But yeah I chose the PICC line just because it was easiest to put in and less obtrusive.
He enjoyed the love and support from many family members but also found it useful to see a counsellor who specialises in post cancer treatment.
He enjoyed the love and support from many family members but also found it useful to see a counsellor who specialises in post cancer treatment.
My Mum was amazing throughout it all. She's a very strong woman with a strong faith and she was my rock to sort of get through it all. She was the one who looked after me and told me everything was going to be all right, likewise with Dad and my brother. It's brought us much closer. It did scare all of us. And I'm sure for Mum having her mother pass away from cancer already suddenly have a, her son get cancer must have been horrific but she was fantastic. And once we knew the prognosis was great then we couldn't really relax a bit but we knew that, you know, things would be all right in the end.
Yes my aunt was a nurse both of them actually used to be nurses and so I'd ring them up for advice on PICC lines for example or the chemotherapy involved. Did I really have to go and stay in hospital for a week? Could I not be an outpatient? What, what were the side-effects likely to affect me. And also along the lines of sort of what foods could I eat during it to keep my strength up. Otherwise cousins rang up. Old friends got in touch but the main support was from family and close friends.
Ok. Have you had the need to, to talk to someone outside the family?
[Ah ha] I went and saw a counsellor for a few sessions afterwards which I found helpful. She was a counsellor sort of who specialised in post cancer treatment and I found that helpful just to talk to somebody who didn't know me and was a third party and just perhaps explain some feelings that I didn't want worry my Mum with or close family. It was helpful to go and talk to somebody who was a stranger actually. And who also understood what I'd been through and what I was going through.
Says that it takes a while to come to terms with the loss of a testicle through cancer and recommends getting a false (prosthetic) testicle.
Says that it takes a while to come to terms with the loss of a testicle through cancer and recommends getting a false (prosthetic) testicle.
For me it was the physical weakness and recovery period after the operation and the chemotherapy. I think the stigma that you've had cancer can also scare friends. People react in different ways. Some will ring you up and be fantastic and ask lots of questions. Others perhaps avoid the subject because it's easier for them. They don't know what to say. So that was quite difficult. Losing my hair was a physical thing. I knew I looked a bit different but you know, it was a side, small side effect of, of staying alive so I weighed that up and sort of got on with it. And the physical aspect of losing a testicle even though I have two now that's definitely helped. I think now you just sort of, you forget, you know you, you move on.
Would you say it's kind of temporary impact would you say?
I think so yeah.
Ok. Would you recommend it to others?
[Ah ha] Definitely. Obviously, you know, different people are a different. I remember being given the option before the operation and without a doubt. I said there's two now and I'd like there to be two when I wake up. And I'm pleased I made that decision.
I don't think you ever quite forget about but it doesn't become so much of an issue that it was a few months ago. I think yeah it's a temporary thing.
Ok but other young people should be aware that this is going to be an issue and that you have to work on it?
I guess it affects people differently. I don't think you really need to work on it but perhaps think of it along the lines that you get used to it in the end. It's not a physical thing that shows, mentally perhaps it takes a while to get your head around it but then once, once you have it's fine or I found it fine.
Was lucky to have the support of a friend of his own age who also had testicular cancer. Otherwise he would have sought the support of others facing a similar experience.
Was lucky to have the support of a friend of his own age who also had testicular cancer. Otherwise he would have sought the support of others facing a similar experience.
My specialist used to run one at the hospital he used to work at for guys with testicular cancer and he said it was packed every week but then he moved hospitals and hasn't carried it on. I know there's a few sort of Internet groups I think mainly based in America especially with Lance Armstrong Foundation and things. I haven't come across anything in this country as yet or specifically in London though.
So you haven't participated in any support groups?
No.
Ok. Would you like to contact a support group or?
Maybe. I think it probably could have been helpful while I was having the treatment. Luckily I knew of this friend who'd been through the same thing and so I had him to explain to me the chemo, the side-effects, physically, psychologically how it affected him so I could prepare sort of what would happen to me. If I didn't have that then yes I think a support group would have been helpful.
Ok so you had someone close to you who was helpful?
[Mmm] Yeah I was very lucky in that respect.
I was lucky. I had this friend who explained to me what he went through and to me that was very helpful. He was my age as well, 24 when he was diagnosed and so I think we had the same, or common sort of fears and anxieties about the treatment and the operation and things. So that definitely helped. If I didn't have this friend who could help me then I think perhaps a support group might have helped. But then there's great information on things like Cancerbackup's website which is very informative anyway.
He attends check up appointments once a month and is no longer so worried about finding a lump.
He attends check up appointments once a month and is no longer so worried about finding a lump.
Lucky to be here and there's lots of things I want to achieve and get on with. The thoughts of my monthly check-ups still do put sort of, what happens if the cancer comes back? What's great is that since the check-ups are so regular if and that's such a small if they ever did find anything it could be dealt with very quickly. But it is a, a small constant reminder that I've had cancer and that life is quite precious and, and fragile. And just to enjoy it as much as possible and achieve as much as possible I think.
Ok. Do you kind of do self examination perhaps when you're having a shower or a bath?
[Ah ha] Not as, I guess perhaps once every two or three weeks, once a month I have examinations when I go for my check-ups monthly anyway. So that's quite re, reassuring. For the first couple of months after the chemotherapy I was quite scared I think to do any self examinations in case I found something in the other testicle. But this is, the statistics are so low of it coming back that you can't let that sort of change your thinking so.