Frosty - Interview 13

Age at interview: 68

Age at diagnosis: 65

Brief Outline: Frosty found a lump on his penis. He sought help from his GP and received several referrals before being diagnosed with penile cancer in August 2007. He had surgery to remove the cancerous part of his penis and further surgery to remove lymph nodes from his groin.

Background: Frosty is a married white male with two grown up children. He is the director of a contract flooring company.

More about me...

Frosty first detected a rash which turned into a lump on his penis two weeks before he visited his GP. He hoped it would disappear but decided to seek help when it didn’t as he has a family history of cancer. He was referred to his local hospital where he eventually saw the consultant urologist. He diagnosed penile cancer and referred Frosty on to a Specialist Penile Cancer Centre. Having lost his mother only a couple of months previously Frosty had to break the news to his family, who were all very supportive.

Frosty’s first operation involved him having the cancerous part of his penis removed and reconstructive surgery. He had no pain, but had soreness on his leg where the skin had been removed for the reconstruction. The surgeon was able to save more of the penis than he had planned but, it was still a shock to Frosty when he first caught site of himself. After a few days he was discharged home under the care of a district nurse. Returning for a post-operative check two weeks later Frosty was told he would need another operation to remove a ‘suspicious’ lymph node. This was a little more painful but he was allowed home after five days. During this time he received support from the Macmillan nurses.

At his next post-operative check Frosty was given the bad news that more surgery was needed on his lymph nodes. After this operation he decided to take his wife on holiday, against the surgeon’s wishes, but everything went to plan and they both returned feeling revitalised.

After having his urinary catheter removed Frosty had problems with urinary retention, which meant yet another trip to the operating theatre! This thankfully was his final surgery and from there his condition began to improve. For the next two years he had to visit the hospital for check-ups every three months, then it was every six months. Half way through the fourth year post-op Frosty was given the ‘all clear’.

Frosty has remained positive throughout this experience. He cannot praise his care or his carers highly enough. His family and friends were, and still are a strong source of support. A keen golfer, several of his golfing companions have had personal experience of various types of cancers and together they have formed an informal support group, swapping stories and giving each other encouragement. Frosty also feels he has widened his horizons, visiting friends, eating foods that are new to him, going out every day with his wife and organising family gatherings.

With his cancer removed and his urinary problems solved, Frosty leads a full, active life and is looking forward to a bright future.

 
 

Frosty found it a bit strange having health professionals examine his penis, but he got used to it and now doesn't really care about it.

Well it was a bit strange to start with because the first doctor I saw other than my doctor at the hospital was a male then his superior was a female and her superior was a female …The first one, I wouldn’t say I felt uncomfortable, I would just say I wasn’t comfortable. Second one I couldn’t really, you know, worry about it and by the time I’d got to see the top person in the hospital in [city] where I had the operation, it didn’t worry me in the least because you’re the only person when I say worried about it, or think, and to put it crudely they’ve seen hundreds and hundreds of men in all shapes and sizes well before your good self and …I made the joke when I was in hospital after I had the second op that I said even the cleaning ladies have seen all my bits, I don’t really care anymore now! [Laughs]. And you don’t you know it’s, you know, we’re all human, we’ve all got them, you know, it’s not something that you, you, I worry about. Funnily enough it did prior to that if you’d have asked me three or four months before I found out I had cancer I probably would have told you a completely different story, but you know, the actual fact of having it makes what anybody can do more important than people looking at you if you know what I mean.

Frosty wasn't as downbeat as he thought he would be when he received his diagnosis: he had the support of his family.

So what were your immediate thoughts when you were given that diagnosis?

I wasn’t happy… But there again they’ve gone from seeing my GP to bump, bump, bump and seeing another surgeon in another hospital by which time the word resigned isn’t really what I want to say but by which time all I wanted was it to be dealt with and obviously the sooner the better because we all know or think – some cancers are different I know but – you think the longer it goes on the worse it’s going to get sort of thing and so you want to get it done so… I wasn’t happy but I wasn’t as downbeat and as down funnily enough as I thought I’d be. I had all the support of my family by then because they knew and that was when my wife was very, very good about it, my son and my daughter they were all very good … and basically I’ve always been a fairly cheerful bloke so you know I wasn’t, I wouldn’t say I was going out and dancing the fandango but I certainly wasn’t as low as one or two people who were in the hospital were when I kind of got in there and had the op. I think it’s just in people’s make up how they are if you know what I mean.
 

Frosty told his wife nothing of his concerns before diagnosis so as not to worry her unnecessarily; she was present at the diagnosis and other consultations and asked questions he wouldn't have asked.

I didn’t tell the wife that I’d probably got it until it was a hundred per cent confirmed because I saw no point in worrying her and the rest of the family until we knew exactly what it was and what was going to happen and um my wife came with me to all the consultant visits and she sat inside while I was being – she didn’t go out like some wives disappear out while the husband’s being – I said, “No she can stay and be…” she was there the whole time so she knew probably, she used to ask a few questions that I wouldn’t have asked, if you know what I mean [chuckles].

So when you did break the news to your family and maybe friends, how did you go about it, how did you reveal it to them?

Well I… sorry… my wife came with me to the one and I knew that I hadn’t told her but when it was announced she was there so she found out the same time as I did. She burst into tears bless her and funnily enough, it sounds daft but the fact that I had kept it from her was a help because I knew and I was able to comfort her which was probably strange. You’d probably think it was other way, that it was me, but she was fine in a couple of minutes, the surgeon was very good.
 

Frosty appreciated the camaraderie on his hospital ward and talks about comforting another patient; he says it was a supportive environment.

There was only five of us in the ward, we had quite a laugh and a giggle and suchlike and so forth.

We always had lots of jokes and comments going about round the people there was one guy who came in who was very down, in fact one night he was – I could hear him sobbing and his wife and daughter and son had come in and he was worried he was going to die and this that the other, so I rung the alarm and the night nurse came and I said, “It’s not me, it’s him over there” [whispers] because he was going down the next morning for the op and I said, “I think you ought to go and have a chat to him” I’d already had my op? It was about the second time I was in… and I said, “He’s, you know, we’ve tried to cheer him up and tell him it’s all going to be alright but he’s absolutely on the floor mentally.” So anyway she went over and sat with him for about twenty minutes and he calmed down a bit and the next day the…. in the evening when the family came to visit and the son came over to thank me and said, “Oh I hear you very kindly rang and got the nurse to talk to my dad last night. He’s fine now and everything hopefully going to be alright.” I went out two days before he went out. I did ask when I came back because I had one more op to go and I came back and they said no he was fine so thank God everything was alright so.

So it sounds like it was quite a supportive environment?

Very supportive, very supportive, very, very, very supportive.
 

After his partial penectomy, Frosty had an operation to remove some lymph nodes from his groin and then a second operation to remove more nodes; a third operation sorted out a bladder problem.

They looked at everything and they said, “Right, we’re going to do another op through your nodules because we’re not – we’re virtually sure everything’s clear but there’s just one nodule that might be a bit dodgy so I don’t want to leave it and then realise we should have done something about it” so told me come back, it’ll be about another week, ten days and again I came in two days earlier to have all the usual checks that you can have, you can have the operation, the pre-operation checks I think they’re called. I came back in, had the second op which funnily enough was a little bit more painful when I came round, but only for two or three hours, and then I think I was only in hospital about five days that time. It should have been seven or eight and they came round and said, “You’ve recovered quite well from it, you can you can go home and we’ll contact you in about a fortnight to three weeks.” During this time while I was away the Macmillan nurses who is at the hospital rang me two or three times to see how I was getting on etcetera and just asked a few cursory questions about, you know how the wife was and everything. “Fine, everything’s fine.” And um… then they arranged another appointment for me to go and see them, which I did, with the wife yet again and we went in and they said, “We’re terribly sorry Mr [name], we’re going to have to do another little op. This time we’re going to do further up for some more nodules. Those ones which we had were alright, the one that we thought wasn’t cancerous but it wasn’t quite right but what we can do is just check all the nodules now we’re doing it.”

You mentioned that you had to have two more operations, is that right?

Well I actually finished up having three more. I had the main one where they took the cancer, then I had the lymph nodes at the sides and the groins done and then when they were done they said, “Ooh I think we’d better just check the ones in the thing” so I went back in again, that was only, I was only in for three days with that one. That was the only problem with that was I had a drain, and most people it lasts three or four days at the most, and for fourteen days I still had it in there, but that was just one of those things. And then the last one was because I had all the bladder problem because of the, what they’d, what he’d done – poked about in there and while he said, “I’ll have you in and I’ll do that for you” and he did that and which basically wasn’t connected to cancer but he just did that. As I said he came up a couple of mornings later when I come round he said, “Hello Mr [name]” he said “while I was poking about in there I had a look at your prostate” he said “I bored that out” he said “you’ll be peeing like a twenty three year old from now on” and touch wood and whistle I have been so, it’s all been brilliant [Chuckles]. And basically everything in some ways I’m better now than I was before I found I had cancer because I was getting up a couple of times during the night to wee in those days, nowadays I don’t get up during the night [Chuckles] so… so I’ve got a benefit [Chuckles].
 

Frosty had preoperative tests on his heart and lungs a week before the operation and further MRI scans and an ECG on the day of the surgery.

I had a pre operational checks i.e. heart and lungs and things to make sure that you’re quite able to have the operation and about a week later I went back in with my wife, and my son took me and we went in and I went and had tests. I had... not electron, atomic scan or something… I had some other scans, I think they were MRI scans, I had another ECG and everything and I was occupied for about two and a half hours. So then I went back up to the, to the ward and then they said, “Right we’re coming to take you down,” which is what happened. I went down and went through the usual bits and pieces, being given the nurse all date of birth and all that sort of thing. Then I was taken into this outside of the actual surgery or yes surgery is it where they do the operation? Operating theatre – sorry, get in right. And was a very nice anaesthetist who we were chatting and then the next thing I remember I came round in the recovery room, with a very nice nurse sitting there beside me and she said, “Well we’ll move you up to your ward in about an hour.”

After having his catheter removed, Frosty had problems emptying his bladder and with leaking' he had a second operation which sorted out the problem.

I’d had a few problems because they’d taken the catheter out when they came back – this was about two weeks after I’d come back, sorry, I came back and saw then the next day. They took my catheter – I was having trouble... at night and I was having to wear pads because my bladder wasn’t strong enough, it was, I was weeing and then leaking two or three times the first couple of nights so I decided to go, we went and got some pads and suchlike from the chemist and I was wearing them at night and I felt a bit… down then and that was the worst of the whole thing funnily enough and probably a man thing, you don’t want to wet the bed if you know what I mean but... Then I know exact date, it was the 13th of September I was back in to see them and they did some tests and they found that my bladder was still three quarters full after I’d just passed water and they said, “Oh, there’s something wrong here der…der…der…” Anyway the surgeon was called and he came in, saw me and he said, “Right, you’re being kept in and I’m going to have a look at that in a couple of days.” So I wasn’t very happy about that purely because it was my birthday and I was meant to be taking the whole family out for dinner that night. It probably saved me money but that wasn’t the main thing on my mind at the time. Anyway, I went in and I had the op about two days later, they didn’t do it the next day, I think they was going to do it but there was an emergency or something and they said, “Terribly sorry you’re going to be, it won’t be today it’ll be tomorrow.” So that… anyway I then had that op and the...I was a bit woozy coming round. It was on the Friday the op, on the Saturday my wife and my daughter came up to see me, I remember them coming but don’t remember much about it. And Sunday morning the surgeon came round to see me and he said, “Well” he said “all good news, everything’s sorted out, I’ve sorted your water works out” and he said “from now on you’ll be peeing like a twenty three year old” and I can honestly say I am but we won’t go into that! [chuckles] I’m, he’s really you know, sorted it all out.

Frosty's cup was always half full and when on the ward he had a laugh with other patients.

So mentally you feel as though you coped quite well?

I felt I coped very, very well. I mean the surgeon said the surgeon said to me I was one of the best patients he’s ever had on that score, as I said earlier my cup was always half full not half empty and I you know not, you know I don’t mean, I’ve got to be careful what I say here, I don’t mean bragging – far from it but I used to try– we used to have – we had quite a – there was only five of us in the ward, we had quite a laugh and a giggle and suchlike and so forth.
 

Whilst it was a bit of a shock to see, Frosty was more impressed by the results of his surgery than he expected.

How long was it before you were able to see the results of the operation?

Well what I’d got left you mean? [Chuckles]. Probably the third day, third or fourth day, can’t remember exactly. First two days I know definitely I was all wrapped up and just had the pipe coming up from – that was wrapped up down there. And it was the – it must have been the fourth day because the third day they changed the dressing on my leg where they’d taken the skin for the skin graft and it was the day after, they the top surgeon came in himself, think he came about half nine, ten, pulled the old curtain round and they were all standing round and prodding – I won’t say prodding and looking but you know what I mean [chuckles] so… and he said, “Oh” he said “that’s great. Ooh I’m pleased with that [Name]” he said. I said “You’re pleased with it!” [laughs] so I made a joke or something and…. because obviously I’m laying flat down, I can’t see it at the time but I saw it later if you know what I mean. The fact – bless her it was the Macmillan nurse came out and said, “Oh, I hear they’ve taken the band…. and hear everything’s alright [Name]” [Name] then became [Name] at the end your, you know, so she sat me up and I could see it and it, you know, obviously it was a bit shocked because it wasn’t the size it was when I last seen it, [chuckles] if you know, but as I said it improved within a couple of months of having the op and you know now basically now it’s not a problem at all, if you know what I mean.

I can only say that the fear and thoughts I had prior to starting the operations didn’t, didn’t come about if you know what I mean, they… I was more impressed with what they were able to do and what they’d done than I thought I would be but I’ve always been a person my cup’s always been half full not half empty which he said helps.
 

Frosty feels that his aftercare has been excellent. A district nurse came to change his dressings, and if he had an appointment he would receive reminder texts to his mobile phone.

Oh, excellent aftercare because they arranged for when I got home, they arranged for the district nurse here to come in who funny enough I’d met once before when I was seeing a friend who had been ill and she was in there with her, and she came in and came and changed any dressings and checked everything and suchlike and so forth. And in fact the pins I had out from the groin, instead of going back to the hospital, I had it done by own GP did it, which was you know, something for them, they looked and saw everything was going all alright. And one thing I thought was good, every time I went to the hospital either for check-ups or for the operations a letter was sent to my GP and a copy was sent to me so I had, and I’ve got the file, I’ve kept the file of all the hospital visits I’ve had, not only for the cancer because I’ve got a bad back as well. I just have everything in a file so it’s you know, it’s nice to be able to…’oh look he is going to be alright’ sort of thing, if you know what I mean, which I thought was very, very good. And they were very, very good. I mean they, whenever I go or went after all the operations I used to get a thing on my mobile phone ‘don’t forget you’ve got an appointment tomorrow at two o’clock’ or whatever it was. They’d always remind me the day before which just – not that I needed reminding – but I always got the reminders.

In the appointments following his treatment, Frosty was physically checked and had several scans and blood tests.

They looked every time, they actually physically looked at everything, checked that there was no reoccurrence of the cancer and we were probably 20 minutes in there, bits and pieces and so on... and I had as well as just those things I had scans done. I went and had either, I can’t remember what scans I had, a CTI or an MRI or something like that, had scans, I had about seven of those during that period as well because they did the scans to make sure nothing would come back anywhere else sort of thing.

And did you have any blood tests?

Did I have any blood…! I’m surprised that this arm isn’t the… I’ve had more blood taken in the last five years than I’ve lost all the rest of my life. Yes, they used to do blood tests nearly every time I went for just to check. Touch wood and whistle, it was always okay.
 

Frosty and his wife find sex a little more difficult now but he feels that sex is less important now than when he was younger.

We’re not how do I say rampant sex addicts if you can put it like that, sex occasionally is still fine. It’s a little bit more difficult but it works if you know what I mean. I mean sex is how, what you make it if you know what I mean and at our age it isn’t the important thing it was when you’re young, if you know what I mean. When you first get married it seems to be the most important thing of your life but you get older and it doesn’t take on that mantle so much.

Frosty believes people who are positive recover quicker.

Well you’ve got to be positive. I’m a great believer the surgeon said to me, “People who are positive, number one recover quicker, number two have more chance of a recovery and number three if you keep positive you’ll be positive all the way through anything that comes up.” And I think it’s true.