John - Interview 26

Age at interview: 75

Age at diagnosis: 74

Brief Outline: After being diagnosed with penile cancer in 2010, John underwent a partial penectomy with reconstruction and bilateral inguinal lymphadenectomy. He then had radiotherapy to remove any remaining cancerous cells. He now suffers from prostate cancer, which is being treated with hormone therapy.

Background: John is a British widowed male. He has one child in his 50s. Now retired, John used to work as a Teacher.

More about me...

John has had some tragic encounters with cancer in his life. His son died as a child and he later lost his wife to the disease. This made him extremely suspicious when he spotted a penile lump. It also made him delay seeking help as he didn’t want his family and friends to have the same experience as he himself had had when his wife had discovered her cancer. He waited about three months during which time the lump grew larger, became painful and bled intermittently. Realising he felt ‘under the weather’ he did eventually confide in his immediate family, two close friends and his church minister.

He went to see his GP who referred him to his local hospital. He was seen there within the week. He had a biopsy taken from the affected tissue and was fitted with a catheter (which he found embarrassing). The surgeon strongly suspected the tissue would prove to be malignant so referred him to a Specialist Penile Cancer Centre, where he was told he had cancer of the penis and underwent a partial penectomy with surgical reconstruction and bilateral inguinal lymphadenectomy. When he was discharged home, he unfortunately developed an abscess. The surgeon at his local hospital wanted to operate, but when they contacted the specialist centre, they advised against it and readmitted him there for intensive antibiotic therapy which resolved the problem.

The tests that John had also showed raised PSA levels. A biopsy of his prostate gland revealed he also had cancerous tissue there. He had a choice of'

1.    A course of radiotherapy to clean tissue left after removal of the lymph nodes – meaning that he could not have radiotherapy on his prostate. This would be linked with three monthly hormone treatment to shrink the prostate and slow down the progression of the tumour.
2.    Radiotherapy of the prostate.

Considering his age John decided the first option was best for him.

Throughout the whole process John feels that he has been kept well informed. The doctors, nurses and surgeons have given him full explanations of his treatment and there have been informative booklets available for each stage of his illness.

He recently went on an active holiday and had continued to sing in the church choir. This does however involve a lot of standing and whilst on holiday he developed sciatic pain. His GP thinks this could be related to his prostate problem; he has had x-rays and is currently awaiting the results.

John gets easily tired and finds it difficult to organise his thoughts. When he wakes up in the mornings he feels very frightened but finds his friends, family and faith a great comfort.

Still attending hospital for regular check-ups John is currently planning another holiday. He doesn’t think about the future too much but lives in the present believing that he has been given ‘extra time’.
 

John didn't delay seeking help because of fear; he didn't want his friends to have to go through the kind of experiences he had with his wife's and son's illnesses.

I didn’t want my friends to have to... go through the kind of thing that I’d gone under with my wife and my son. I wanted to put it off. There was a little bit of me sort of all the time thinking ‘well it won’t happen, it won’t happen’. It was as simple as that, I, you know. And that’s why peop.. my friends have said and my son and daughter and that ‘that’s crazy John’. But it wasn’t. To me it made... at the time it made sense, you know. Now I share it all with… everything with them. You know and... the little things and the big things. Because there’s no little things. And also, if there’s anything I go to the doctor. I mean this is the first time but it’s happened but I went to the doctor. You know whereas I hadn’t really visited my own doctor apart from regular checks because I have I have blood pressure tablets which have gone on and I’ve got to see him. Apart from that I’ve not really… consulted with my doctor since this all started. So that’s the answer there. And it’s a very important one. You know…it wasn’t it wasn’t a case of... it wasn’t fear. It wasn’t fear. It was it was … disclosure to others and the effect it would have on others, you know.

John did not mind nursing staff seeing his penis; he used humour to overcome any potential embarrassment.

How did you feel about people observing your penis like that?

[Laughs] Oh I had I had quite a joke with the nurses and the staff. I you know to this day it... with nursing staff it doesn’t embarrass me at all, you know. But with obviously nobody else sees it but with nursing staff I mean you know that’s it, you know …So I was not embarrassed at all, you know. I have to strip down and that’s it, you know. And it was sometimes a lady medical assistant doing it. It was sometimes... well it was mainly they were the one that did the treatment of course. The district nurses we just had a great... honestly we had a great laugh because I had a dressing which had to be removed and it was it was wrapped round something which itself was very mobile and we had to work out how to you know... and we’d have a good laugh about it, you know so… no I was not embarrassed. I can’t explain why but I was not. I mean they were part of my process of … So there wasn’t any embarrassment. It’s all to do with how people react to you in the way in the way that you’re being treated I think.
 

After his lymph nodes were removed John had small samples taken to see if there was any evidence of cancer in his system.

Then they said, ‘Well since the lymph nodes have gone now we’ve now got to check whether they’ve spread to your main system’. Now that was something that hadn’t been mentioned initially. But they then said, ‘If it’s at the main system then we have all kinds of possible problems because once it’s got there, it can go anywhere in your body’. So, you know, then I just accept that. I thought if it’s going to happen it... it will happen. Again my faith sort of said, ‘Well I’ll be looked after’. And… it was done at... well they had a special I think they used micro-surgery and they removed samples and there was no evidence in my in my system whatsoever. So therefore as far as they were concerned it was clear. But then I had to be referred to the another specialist who looked after radiotherapy. Because paralleling this they found that my PSA [chuckles] was higher than… so they suspected that I had prostate cancer. That suspicion has been verified with another [chuckles] another biopsy. But you know I smile but these all went on very quickly the whole thing was done.

John felt he was going into a black hole when he heard 'cancer' because his wife and son had both died of it. The specialist reassured him that it wouldn't necessarily mean death.

So what were your immediate thoughts when you when you first heard ‘cancer’?

Oh I thought I was going into a black hole. You know I thought…..no that’s it. Nothing more, nothing less. You know that’s it. God I’m in your hands now. You know and that was it. I didn’t know. So why should I sort of get myself in a state. My wife had died, my son had died, I… then that’s going to be me, you know, at some stage. And then this oh…..then this the first specialist said ‘no, no, no, no it may not… it probably won’t be that’ you know so… Well I’m not afraid of dying you see. This is the thing. I mean if it happens when you’ve watched a 7 year old boy die with Leukaemia believe me you’re not afraid of dying. You know if he could do it the way he did then I could do it. And then my wife and then… yeah. That’s part of life, you know.
 

John felt he was going into a black hole when he heard 'cancer' because his wife and son had both died of it. The specialist reassured him that it wouldn't necessarily mean death.

It really is complicated all the possibilities… that well which one is it so you know I… I didn’t. I relied on what they told me and what the book’s… now I’m you know I’m a university graduate, I’m a former teacher. It seems strange but in fact I only wanted the information that I needed. I didn’t want any more and a friend would say ‘well don’t worry about things like that John. Let just listen to what you’ve been told. Don’t think about ‘what if’, ‘what if’. Get away from the ‘what if’ situation and that’s what I’m trying to do. And that’s why I’m in the middle of this waking up in the morning and feeling ‘what if’ you know. And it’s crazy you know. Because….’what if’ doesn’t… shouldn’t exist because I know that I’m going to be looked after. And there’s somebody there who will know what to do and if… it might be different for someone who’s not had the kind of treatment that I’ve had. My treatment’s been superb, yeh.

District nurses provided emotional as well as practical support when they visited John at home to help him with his dressings.

At this point I think I’ve got to mention that we have a district nursing service here and it is it can be second to none. The district nurses were absolutely wonderful. They came in every day. They helped me. They helped me. They dressed me because the problems were dressing the... dressing the wound. They came and they supported me. They chatted to me. They smiled to me. And it was absolutely wonderful. So physically they were there with me for the whole of my period of going through this and for all of my treatment. Dressing wounds… I didn’t have to go surgery. They came out to my house.

John valued the support of his faith, his family, friends and neighbours; he received lots of cards, phone calls and offers of help from well-wishers.

My Christian faith which is very strong. I’m a lay preacher. And somehow… like this morning I’ve just been to our prayer meeting. Then... the... they were there to support me all along and have been all along in a kind of cushion that knowing that… somehow, whatever happened, God would be there for me when I went through it. And… the promise has been kept. I’ve felt that assurance. So I won’t refer to that assurance again because it was there all the time, this assurance. Peop... friends were ringing me up, coming to see me, friends, I had over 50 cards twice in the process. So that is inherent in all of this and I still don’t know and I’ve talked to people about that and I still don’t know how people without faith can go through something like this. That they’ve got no... nothing outside of themselves to support them. Because I was supported from inside and from outside. Oh yes the services were wonderful. I mean, the, but... But you were left on your own. Well I never felt as though I was alone. Someone would call up. Someone would come and we’d have a chat, you know. And one friend has been with me all ev... he’s been going down to the hospital with me every time. Almost every time because my son had had to work and it’s difficult for him to get out. My daughter-in-law had time. She came down occasionally, being wonderful. My lady friend she’s just been there and just given me the support when needed. But it’s this feeling that that I’ve got support.

I mean it’s my family as far…we’re we’re a close unit so I think the concern is there, the love is there and the, but it was always there you know. When my daughter-in-law would ring me up and say ‘are you alright John?’ you know because I’m on my own so… and I came to live here after my wife died so I’ve been on my own so yeah I think friends and family just ring me up anyway. So yeah the friendship is stronger. Around that periphery, around that in the periphery a lot of people who I found were acquaintances I realised it’s much more than an acquaintance. The friendship is much deeper than that. I told you about the cards, you know, and the phone calls and the emails and so forth. I realised that in fact this is concern at a deeper level so… family aside, close… but it’s just continuing. But I’ve realised that there’s… I’m so blessed I’ve got so many really wonderful friends and neighbours who are prepared to help. And the couple next door they’ve left now. And I was doing something in the garden and you don’t talk to your neighbours very much, you know, and he came out and he said, ‘I’ll do that for you if you want’, you know. And yet we had we you know we talked but never very much. So I think it brings out things in people… that were there. We’re a very inherently sort of… conservative soc... group of people, we British. And I think this has made me realise that in fact yeah, you know, these people are concerned and they want to know how you are, you know.
 

John regrets not telling his family sooner; he doesn't want to talk about his cancer now because he has moved on.

I’m reluctant to talk and I feel rightly reluctant to talk about it. It’s not something that that... I talk to you… because of this is why I hesitated for so long because talking about it. I don’t want to talk about it. I’ve moved on, you know. And looking for the next stage rather than stages that have been… because… I think this is the gift God’s given us that in fact you know once it’s happened you… you might have made a mistake - I made a mistake. I should have told my family earlier. They’d have known earlier. It wouldn’t… it might have made… it would have made some difference. There’d have been some changes but it’s happened. So therefore I move on. So only people in a sense who are in a supporting mechanism are the ones that know, you know. And that’s the way I want it to be, yeh.

John told his son and daughter-in-law all the details of his diagnosis but just told his granddaughter that he had 'cancer' and didn't say it was on his penis.

Oh I had no problem once I’d told... I just went back I went round to my son and I said ‘look’ and that was it. I said you know ‘I’ve got something to tell you’. I couldn’t hide it any longer you know I mean you know and that was it. So with my son and my daughter-in-law and I told them. And my niece... my granddaughter rather who is sort of 17. And I knew my granddaughter was in tears you know and that’s the very thing I didn’t want to happen. But it did happen so you know I had a I had a chat with my granddaughter on her own and… afterwards you know we talked to her you know. And so that was it. But it was a generalisation with her that I had cancer. You know… my son and daughter-in-law they were given the details and of course my son went down to [Name of place] with me. So he was there when I saw the specialist and he had his notebook, making notes of everything that happened. He’s done that as often as he could because of this wandering mind of mine [Laughs].

To maintain his self-esteem, John had to learn to let people help him.

Well I find that I’ve got to laugh at myself when I forget things now, yeah. I’ve got to laugh at myself when I stumble, you know because I do that but yeah. But in terms of my self-esteem the main thing is and I again this is important, I’ve had to learn that if someone is concerned about you and asks you, I told you I find it very difficult to talk. Now if someone offers something I don’t. If someone is if someone is wanting to do something and be helpful then I say ‘yes alright’. Even if I can do it myself sometimes occasionally I’ll let them do it. I mean on holiday people were picking my case up you know. I could have done it but no someone else did it for me. You know ‘no you’re not going to do that John’. You know well I mean I can pick up a chair and move a chair around. I mean I’ve done some furniture moving and stuff like… But that wasn’t the point. They wanted to do it so I said, ‘Oh thank you very much’. I didn’t... you know. So from that point of view accepting help from others is very, very important when they offer. Even if you don’t... even if I don’t need it, you know.

John smiles because he feels he's got a lot for which he feels he should be grateful. For a short time in the mornings, he is scared but his faith helps him through this fear.

And... you know people say ‘well you’re smiling John’ you know and I smile and I always smile. I said, ‘But I’ve got a lot to be grateful for’ I said ‘I’m here’.  I’m able to do things. The things that might have happened haven’t happened. There might be other things happen but at they’ll if they come they’ll come. I not going to sit and think well it might that. But it’s when I wake up in the mornings, this is important in the conversation, when I wake up in the morning for about quarter or an hour, twenty minutes I’m scared, you know. And I mean that seriously. I’m scared, you know and… and then…I pray. That’s where the faith comes in. I pray and I get up and I think right I’m here, let’s get on with the day. You know and there’s nothing to be scared about because I’m not I’m… you know if something happens God’s been with me so far. He’s going to be with the rest of the way.

John felt relief after seeing the results of the partial penectomy and reconstruction. It was better than he expected and he was relieved to have his catheter removed.

How did you feel when you saw the results of that?

Do you know in a... I could only say one word' relieved. Because what I’d been hiding for months was now out. And it wasn’t as bad as what I’d be what I thought it would be, you know. And that’s what’s happened all the way through, you know. Relieved. I you know… it was something I was.. I don’t like hiding things and it was something I was hiding and it was affecting me and it it’s gone. I mean it’s there now and I live with it and people know what I’m living with.

So the results were as you expected them to be?

Well as I as I was told they would be, yes, yeah. They’re better than I expected, better than expected. I mean I don’t have a bag. And that that’s… I don’t know I mean if this is being used for anyone else... I just feel so much for people who have to wear catheters of any form.

That was just… I just wonder I mean… oh I don’t think it’ll happen again. I mean I don’t think I’m going to have operations like that again. I don’t think I would let them but to have that is just…. unbelievably sort of… well just…. you know and I went through the thoughts of that and when that was removed I, you know, I went in to see the nursing err the nurse and she checked everything and she said, ‘Well it’s alright. It should be alright’ and she removed this. And I have never felt so… sort of relieved in my life, you know. So tell people that, you know. It’s hell. I mean it’s… it’s an awful feeling.
 

John says taxi journeys to the hospital were expensive but a local volunteer driver service helped.

Have there been any other financial implications of your diagnosis?

I told you- the cost of taxis. And that is scary because some people who were have... having treatment and I thought gosh if they have to come down to [city] every time I don’t know how they do it unless they’re on private, you know. And it really was very expensive until I had the support taxi and then the support taxi took over from…. they couldn’t provide transport at a minute’s notice so I did use the an ordinary taxi on one other occasion. But yeah the cost of taxis. In terms of my daily life I’m not working. I’m retired and… no… it hasn’t affected my me. It’s affected me financially. I’m used to quite a bit of money. But the money… is there, you know. And when it’s gone [laughs]. Well when it gone when it’s gone I’ve got my house, you know, and so I really am not concerned about the financial side. I can understand being desperately concerned about it, yeah.
 

John cannot stand for as long as he used to and he tires very easily.

I love my singing. The thing that’s affected my singing is I don’t I can’t stand as much… on my on my feet. I tire very easily when I’m standing on my feet. And I think that’s because these operations were in my groin. I was also told that that it may affect my left leg where the lymph nodes were re removed. It hasn’t affected my left leg but I think maybe it has... but not in a particularly negative way. I mean I can walk and so forth. Presently I’ve got sciatica but that’s [chuckles]…but I can walk and go out and stuff like that so I think it’s just in terms of my kind of… ability to coordinate and organise my thoughts. That’s I think it has affected that. But that might be age as well, you know.

John said there was no discomfort with wearing a catheter and a bag but he felt embarrassed about it when out in public even though other people can't tell it is there.

What did you struggle with most in regard to the catheter?

Embarrassment. I couldn’t hide what I what you know… Because they said you know they said to me ‘well of course it….there are so many different types of catheters and you can have a bag which is unobtrusive and so forth and no one will know’. You know but I think... I would know and I knew and even when I was carrying them I mean they were they were... I went down to London with one tied onto my leg. You know, so people in theory didn’t know but didn’t matter- I knew. So… just the embarrassment of sort of having that.

So more that than the physical discomfort?

Oh there wasn’t any physical discomfort. I mean I just got used to sort of emptying the bag. It was just the physical discomfort was there initially because of the soreness of the well not the soreness but the treatment of the penis, you know. But I tell you I had a laugh with the nurses. I mean we had we had fun trying to sort that one out for a long time.
 

John says even the more advanced cancers can be cured, and life after cancer can be just as rich.

Oh yes. It can be cured. And that’s not… I mean I you remember I told you I was the level 3 cancer that I had which was the most sort of virulent and I’ve been cured from it so… Yeah it will it could be uncomfortable but life you can get on with life but if it’s a young person I think that’s a different animal all together, you know. And I’m an older generation but… for someone younger....it must be devastating on the sexual side. I mean I don’t think there’s any of that answer for it, you know and... They’ll have to face up to problems which I haven’t faced up to. And as a complete… new way of looking at life. But the main thing is that that life can be just rich afterwards. And that these specialists know what they’re doing, yeh. They do. They know what they’re doing.