John - Interview 22
More about me...
John was frightened to mention his haematuria (blood in the urine) to his GP so waited until he went to see the nurse for his six monthly diabetic check-up. He was referred to a Specialist Penile Cancer Centre where they detected a small lump under his foreskin which the consultant diagnosed on sight as being cancerous. He was told he would have to have surgery but was ill informed as to its extent – a total penectomy. Post operatively, he was seen by a Macmillan nurse who talked about chemotherapy as a future treatment option, but remembering a friend’s bad experience of ‘chemo’ he refused.
A few weeks later John was told of the possibility that the cancer could have spread to his inguinal lymph nodes. A biopsy (carried out simultaneously with the repair of a pre-existing hernia) showed that his left inguinal lymph nodes were indeed affected. He then underwent a left inguinal lymphadenectomy which unfortunately was complicated by a wound infection which necessitated a readmission to hospital. However, once there was a marked improvement in his condition John’s wife was shown how to care for the wound and he was once again allowed to go home. Throughout his treatment John feels that he was poorly informed and his step daughter had to press for information on his behalf before the medical staff explained the process and implications of his treatment.
John now gets out and about but has learned to plan toilet stops into his journeys. He admits he has become less affectionate towards his wife as he now feels somewhat sexually and emotionally impaired. He currently suffers mood swings and depressive feelings which he has not mentioned to either hospital staff or the staff at his GP surgery. He still attends the hospital for check-ups every six months but feels he has little or no ‘back up’ or support from them.
In the hospital John Z was able to have a laugh and a joke with other patients; everyone was in the same boat.
In the hospital John Z was able to have a laugh and a joke with other patients; everyone was in the same boat.
I think I was the only one who was dealing with any actual surgery removal of any parts. The rest were in for rodding as they said [chuckles] being rodded and a couple of hernia patients. Apart from that we was all in the same position. We all had catheters in and being well you had to, you had to make a laugh and a joke out of it especially when you was on nil by mouth. You know you say ‘well what you having lunch today?’ and you say ‘fresh air pie’ [laughs]. But yes it was… I think they was all in the same boat really. You was all in there some were in more pain than others I think some people are more prone to feeling pain than others and perhaps I was lucky I didn’t feel… I wanted to keep on being a nuisance to the staff in anyway. At least I hope not. Yeah I... that was... that was about it.
When talking to the man in the next bed on his ward, John Z told him he had penile cancer.
When talking to the man in the next bed on his ward, John Z told him he had penile cancer.
As I say, there was all in the same position as you were. They… some knew… I was closer to some of the patients like the chap in the next bed asked me what I was in for and I said it was penile cancer and I’ve had it removed and…that was that was as far as it went you know. He didn’t enquire as to what the symptoms were. Nobody… nobody asked what the symptoms are or …so…therefore I suppose it it’s such a rare occurrence that nobody seems to bother really.
John Z had his operation under an epidural because he has a lung disease. Under epidural he could hear the staff talking and his legs felt like cement, but he felt no pain.
John Z had his operation under an epidural because he has a lung disease. Under epidural he could hear the staff talking and his legs felt like cement, but he felt no pain.
And then the operation was... took place and went down to the… because I’ve COPD they didn’t want to put me out so they said, ‘Would you have the epidural?’ So I said, ‘Yes’. …so I had that. I didn’t know [chuckles] what they that involved but it freezes you from the waist down and I was taken into the operating theatre. I could hear the music playing and the conversation between the consultant and the nurses and doctors, what have you, and the anaesthetist stood just by my side keeping an eye on my pulse
How did it feel being paralysed from the waist down?
Strange [chuckles]. Very strange… obviously after they’d done the operation they put a catheter in so I didn’t need to get out of bed to go to the toilet in that sense so… But …my legs felt as if they was in cement. Very heavy and…yes.
Could you feel anything during the operation?
To start with I could feel them I take it they had a low ...I’d taken a some pubic hairs off myself. Obviously that wasn’t enough and I could feel the electric razors around that area when they was pressing. But that was only for a moment or two. Apart from that I didn’t feel anything.
And how long did it take for the epidural to wear off?
….I suppose until the next morning before I could have… because… I was... I must have slept alright [slight chuckle]. And in the morning I could feel my legs and the constriction of the surgical stockings because they seemed to tighten your legs up anyway [chuckles] don’t they? So yes very, very uncomfortable, I was glad to get rid of those [laughs].
John Z was anxious about seeing the scars from his penectomy but a nurse removed his dressings so he could have a shower, so he had to look at it.
John Z was anxious about seeing the scars from his penectomy but a nurse removed his dressings so he could have a shower, so he had to look at it.
So how long after the operation was it before you saw the results of the surgery?
Going back to being a coward I daren’t look. I could see the tubes coming from my pyjamas and a bag that I knew I’d got a catheter in. But I didn’t look anything until a nurse come along said why hadn’t I had a shower that morning or a bath. I said, ‘Well I didn’t know whether... what... whether I was allowed to or not or…’. She said, ‘Oh yes you need... need a shower’. With which she undone some bandages that was holding the catheter against my body. Took them away, she said, ‘You’re alright now. You can go into the shower’. I said, ‘Right, fair enough’. And I went in and had the shower and but then I looked down [slight chuckle] and see what’s happened and… that was about it, you know. Apart from, I hadn’t looked previously to see what had been going on.
John Z occasionally gets depressed, but it is not common knowledge.
John Z occasionally gets depressed, but it is not common knowledge.
What do you think has been the major effects of the illness or from the treatment on your daily life?
Obviously you get down sometimes you think well why me? Why has it happened to me? And, but... you know I think well there’s people in worse situations than I am. So get on with your life. But I do go into depression occasionally. But most of the time, I think well there’s people a lot worse off than I am. Just get on and make the best of your life.
Have you had any support for that depression?
No I’ve… apart from yourself that’s the first time well the wife obviously knows I get depressed and… I have mood swings sometimes I take it out on her. No it’s the first time.
Should you be offered any emotional support, would you take that up?
It’s not happening on a regular basis. It’s some things just get on your nerves and drives you into a sort of depression. Nine times out of ten you can snap out of it and say to yourself well you know, as I said before, there’s people worse off than you are. But no. I’ve never mentioned it when I’ve been up to the surgery or… whether I when I go for my checks. No. Apart from myself and my wife. Probably she’s told her daughter that I have mood swings and… yeah. But I don’t make common knowledge, no.
John Z was passing blood in his urine but delayed reporting it until his next routine diabetic check up; he says he should have sought help sooner.
John Z was passing blood in his urine but delayed reporting it until his next routine diabetic check up; he says he should have sought help sooner.
Yes possibly I should have gone sooner because it was discovered on a diabetic check. Well prior to that I had the nurse said there was a spot of blood in the water but she wasn’t too concerned but within 3 or 4 weeks of that I was passing more blood and in fore... with foresight I should have gone back there and had it checked out but… being a coward [chuckles] I didn’t do that. I just let it run on to the next 6 monthly check where it was picked up and I had no options then [chuckles].
John Z was left bewildered after a blunt diagnosis from two doctors with no further explanation.
John Z was left bewildered after a blunt diagnosis from two doctors with no further explanation.
Can you remember the language used when you were given the diagnosis of cancer?
[Slight chuckle] yes it was rather blunt really. He did say ‘that’s... oh that’s cancer. But I’ll get a second opinion’. With that he went out the room. Another doctor come in, examined me, said, ‘Yes that’s cancerous’ and that was that was all there was to it. It was left as that. They said, ‘You’ll be getting a letter’. And I come away bemused and bewildered really.
What were your immediate thoughts when you heard the word ‘cancer’?
What one normally thinks of... possibly the end of my life.
Initially, John Z daren't look at the results of the operation. When he did look he was shocked and was afraid he would have to wear a catheter for the rest of his life.
Initially, John Z daren't look at the results of the operation. When he did look he was shocked and was afraid he would have to wear a catheter for the rest of his life.
So how long after the operation was it before you saw the results of the surgery?
Going back to being a coward I daren’t look. I could see the tubes coming from my pyjamas and a bag that I knew I’d got a catheter in. But I didn’t look anything until a nurse come along said why hadn’t I had a shower that morning or a bath. I said, ‘Well I didn’t know whether... what... whether I was allowed to or not or…’ she said ‘oh yes you need a shower’. With which she undone some bandages that was holding the catheter against my body. Took them away, she said, ‘You’re alright now. You can go into the shower’. I said, ‘Right, fair enough’. And I went in and had the shower and but then I looked down [slight chuckle] and see what’s happened and… that was about it, you know. Apart from, I hadn’t looked previously to see what had been going on.
What did you think when you saw the results?
Well shock really. I thought well I’m going to have to have this catheter for the rest of my life and but then they said, ‘No we will give you a trial without it’. I felt better then because I’ve heard of people having the catheter in and it’s causing trouble, so I thought well yes I’m happy to have it out. Which I was, yes [chuckles].
John Z visits hospital every six months. He feels okay until he gets to the hospital when he feels a bit apprehensive and anxious.
John Z visits hospital every six months. He feels okay until he gets to the hospital when he feels a bit apprehensive and anxious.
And what kind of aftercare or support do you receive from the hospital in terms of check-ups and follow-ups?
Only my six monthly visits to the hospital. You just... I just get examined. Takes about five minutes. Then he says ‘see you in six months’ time, everything’s going alright’. So I think well good, I’ve got another six months [chuckles] and… Yes it’s so I take it from… every six months I feel happy ‘til I go there and you get a bit trepidation then' is it all alright and… But no there’s apart from that… no there’s...that’s the only back-up I get.
At those appointments do you have any blood tests or scans?
No, no. They’ve, I haven’t had any scans for ages. The only blood tests I get is when I have diabetes... I’m diabetic Type 2. Which every 6 months I get checked at our own surgery. The week before I have the diabetes checked out they take blood. And then I go and have a urine sample and then they come and tell you what’s happening. Touch wood [chuckles] everything’s been [chuckles] alright there.
John Z has a radar key so he has access to lockable public toilets. He needs to urinate often so plans journeys around toilet stops.
John Z has a radar key so he has access to lockable public toilets. He needs to urinate often so plans journeys around toilet stops.
If we’re going out in a group I might need the toilets and I have to go into the cubicle rather than a urinal. As I said I have a Radar key which is handy because you go to the toilets, say you’re on the coast some of them are vandalised and you can’t lock the doors and you’re…so it’s a bit embarrassing so with the Radar key, you’re in the toilet, you’re in by yourself and you can do what what’s necessary and out again. Yeah.
To go…any distance I need to make regular stops I’m not so confident in driving any distance because you can’t just stop and go behind a hedge. Not nicely [chuckles]. I haven’t tried it but [chuckles] I would think it’s very awkward so yeah I don’t, even to go to 30 miles say to [town] I usually stop at [other town] and use the toilets there. So it’s about half way and I need to relieve myself. Yeah [chuckles], yeah.
John Z has had a total penectomy and finds it difficult to respond when his wife shows affection; they no longer sleep together.
John Z has had a total penectomy and finds it difficult to respond when his wife shows affection; they no longer sleep together.
And how about in terms of your relationships? Maybe your relationship with your wife, has there been any effect on that?
Yes I think she’s more of a cuddly person and because I can’t perform any acts now I seem to push her away. So in that respect yes, I’m more…I should say colder than I should be really. But I get no satisfaction so... and as I say we’re getting older so... but she’s still a loving person and she wants it returned and I think she understands most of the time but sometimes she gets to the point where yeah she would like to have a cuddle but no we try to minimise that by sleeping [chuckles] in separate rooms so it doesn’t come to any. I think there’d be more arguments if we slept together than being in separate rooms.
There's sometimes no feeling in John Z's swollen leg. This has made him feel unsteady, especially in crowds.
There's sometimes no feeling in John Z's swollen leg. This has made him feel unsteady, especially in crowds.
It does it seems to be dead sometimes, your leg, there’s no, no feeling in it. And just make sure I’m steady, I walk with a stick and just I think there is a club but I’ve never been one for going to organisations [slight chuckle] or I just carry on and try make life as normal as possible.
Yes it’s made me more unsteady. I don’t like being with the crowds or because I seem to go off balance occasionally and more so in crowds. If people are coming towards me I’m…all of a dither. I so I stay away from crowds. Hence I don’t go in the city shopping now….wander…..I we’ve recently improved our superstore up here and err that’s I find that’s a lot better because there’s… the aisles are wider and there’s not people coming towards you. You don’t feels so unsafe.
John Z thinks more information would have been helpful.
John Z thinks more information would have been helpful.
Yes to be a bit more straightforward with the person. To inform… be more informative. I think I didn’t get a lot of information as to what was going to happen or what the results was going to be or anything like that. I think information would be very helpful, yes.
Waiting until the next appointment without any information or feedback after the operation left John feeling bewildered; his stepdaughter looked up information for him on the internet.
Waiting until the next appointment without any information or feedback after the operation left John feeling bewildered; his stepdaughter looked up information for him on the internet.
I was happy how the time elapsed between getting diagnosed and the extra operation being done. But there was no back-up really to tell me anything about it or what I was looking forward to in the future. I don’t think even now they after the examinations, it’s just ‘well we’ll see you in 6 months’ time’. There’s no’you’re doing alright at the moment’ or what have you. But no there was no… feedback from either the doctor or my surgery as to what was going to happen….really.
So how did that make you feel?
Well as I say bewildered. My step daughter looked it up on her computer and got as much information as she could. But I think it’s limited even on the computer. It’s very rare occurrence or it seems to be in general so there was not a lot of information available. I was told the consultant was the best in his field and so I said ‘well you’ve got to go with it now’ which I did really.