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David - Interview 14

Age at interview: 70
Brief Outline: David underwent a partial penectomy with surgical reconstruction in 2008. A subsequent lump in his groin resulted in further surgery and radiotherapy. He has regular hospital check-ups and remains positive about his future.
Background: David is a white married male. Now retired, he used to work as a freelance adult educator.

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David had been suffering with a sore lump under his foreskin for a few months. He assumed it would go away even when his foreskin became tight and painful. He was seeing his GP for longstanding heart problems and so mentioned it to him during one of his routine check-ups. He was referred to his local hospital where a biopsy was taken. He was then referred on to a Specialist Penile Cancer Centre where cancer was confirmed. He underwent a partial penectomy with surgical reconstruction. This was in 2008.

His wife was and continues to be very supportive. He had specific fears about not only the surgical procedure but also his sexual function and the possible spread of the disease. The specialist nurse helped him tremendously with this. Following surgery David was first checked at three monthly intervals and then six monthly. At the end of 2010 he asked the consultant how he should check for lumps in his groin as no-one had ever shown him.

In January 2011 he detected a lump in his groin. He didn’t do anything about it until ten days later as he was due to go to hospital to undergo catheter ablation for his atrial fibrillation. During this procedure, whilst inserting a catheter into his groin, the nurse mentioned about the lump and the following week he rang the specialist centre for advice. A provisional cancer diagnosis was confirmed by a scan and David was told he needed an inguinal lymphadenectomy. His hospital admission was delayed by two weeks owing to poor communication over his warfarin levels.

He eventually had his operation and was in hospital for about eight days. When he had been home for about three days the district nurse became worried about inflammation around his wound. He was readmitted to hospital for seven days and underwent intensive antibiotic therapy which resolved the infection.

Soon after his recovery David resumed walking and rock climbing, knowing that he was going to have radiotherapy in the near future. He had a total of thirty days radiotherapy and found it took him longer to recover from that than it had from the surgery.

He now has lymphoedema which he finds worrying and is anxious to the ‘right thing’ regarding exercise, diet and alcohol consumption. He is now seeing a lymphoedema support nurse and has joined the Lymphoedema Support Network, something which he has found extremely valuable. He is currently waiting to see the radiotherapist and still has regular check-ups with his surgeon. He intends to go back to the gym to build himself up so that he can go on walking holidays once again.

 

 

At a routine appointment for his irregular heartbeat, David mentioned that a lump under his...

At a routine appointment for his irregular heartbeat, David mentioned that a lump under his...

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Yes I was first aware of a sore, some kind of lump, which was just on the under underside of my foreskin. And it was probably it would be some months I think I was aware of this, it becoming more sore and tighter. And so I saw my GP who it interestingly it had been a GP who had who specialised in heart conditions. Which be a fairly big practice and I’d been seeing him for atrial fibrillation which is variable pulse rate. And he’d been diagnosing me to that, for that, looking at that and had actually directed me towards a specialist at in [Name of place] for that condition. Saved me actually a lot of time rather than going through the conventional referral to a general heart specialist. So that was particularly good by him and then I also mentioned that I’d got I was I was sort of, you know, suffering this soreness and he had a look at it. And so he sent me to a referral to a consultant who I saw very quickly at the local hospital, local general hospital. And he did a biopsy probably within a month, less than a month I should say, of the GP first saying that there was some concern.

 

Rather than hold anything back, David would much rather the consultant delivered a diagnosis...

Rather than hold anything back, David would much rather the consultant delivered a diagnosis...

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I would say that it’s been that he has talked in a... there’s a certain bluntness, almost a certain coldness about it. …other medics I’ve dealt with have had more warmth I have to say. But I think it’s a difficult matter. So I would much, much rather he was blunt and direct and didn’t hold anything back at all than sort of in a much more cautious way. ...I think have to say I think I said before, I think that having the specialist nurse where it… it does is extremely helpful because I think the bluntness the thing is that you can only work out the what the implications or formulate some... the questions that you want answering… I mean I know it’s just standard isn’t it? To go and see the consultant and it’s almost impossible to think of the questions. You know all sorts of questions come to you afterwards and I think that that inevitably happens but I’d much rather I’d much rather know. I mean if he if I have to say to him ‘what’s the prognosis?’ and he said oh you know he might say ‘oh well I think you’ve yeah very good chance and should do…’ But what he what he will say straight away is well ‘you’ve a 60% chance of living over 5 years’. Which I suppose is slightly [chuckles] better than saying you’ve 40% chance of not living another 5 years. But you know precise... I mean that is a pretty that is pretty, a pretty big marker I suppose so if do have a return of it, if I’m you know if the 40 if it’s the 40% rather than the 60%, and have this return within 5 years then I’m then I’m not left in the dark then either. So I would rather have it that way. And I do think I do think perhaps it could be delivered in a less I don’t know somewhat cold manner. And yet he’s not a not a very formal sort of…man. But it must be it must be so difficult for them to be doing all that work with people and seeing I don’t know how many you know when he has one of his consultations in the morning I don’t know how many people he sees. 15? 20? 10?, 15?, 20? Dealing with all that and all those different emotions and all the rest of it potentially extraordinarily difficult. And then to have a head, you know, have your head straight and be able to perform the surgery, you know, perform the surgery and deal with deal with all the implications of that. It’s a phenomenal activity. It’s enough to drive most of us round the twist I would think with either anxiety or just run away from it. So I it’s it when I the more I think about it, you know, just talk about it it’s very understandable. And it’s better to be it’s better to be on the cold side and blunt rather than to be evasive and moving away as it were from the patient I think. Yeah.

 

David was surprised to receive a diagnosis of cancer but not particularly worried because he had faith in the treatment: on reflection, he wonders if he had been in denial.

David was surprised to receive a diagnosis of cancer but not particularly worried because he had faith in the treatment: on reflection, he wonders if he had been in denial.

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So what were your immediate thoughts on receiving the diagnosis of penile cancer?

I just I thought and having seen the consultant, I mean I suppose I was a bit I was surprised. I wasn’t particularly …worried. I … when the local the consultant at the local general hospital told me that it was you know likely that it was cancerous I think he he’d… I spoke to him on the phone actually and I think he said to me something like ‘Well the regional specialist I’ll refer you to the regional specialist and I know he’s very, very good and I’m sure he’ll see you very quickly’. So I thought well that’s fine, I’m sure it’ll be sorted. And when I when I met the consultant I thought he told me and he thought the chances of cure, you know, were very good. It may be that it if there was any return I might have to have the lymph nodes removed. So I was I he gave me that knowledge early on and, as I say I think earlier, that I felt the operation had been successful. Well I think it had been successful. And I just rather assumed that had cleared it so I never took the threat of cancer, it never struck me as being particularly serious. Now I it’s interesting to think about it now retrospectively, was that because I was just blasé or I wasn’t or was it because I wanted to deny it in some way, just saying ‘oh well I may have it… it’s kind of..’ I didn’t really want to acknowledge it and take any notice it? I don’t think it is… I don’t think that’s the reason. I just was I just thought it would, you know, it would it would go. I thought well I’m healthy. I am very healthy, you know been healthy all my life.
 

 

David appreciated his consultant’s ‘head on’ approach and found the specialist nurse helpful in...

David appreciated his consultant’s ‘head on’ approach and found the specialist nurse helpful in...

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And he told me that I should be able to err everything would function after the operation. That, you know, that there was a very, very good chance that it would, as I remember. But I also I also remember that I think I my wife was with me but I went in first on this occasion to see him. And then I think we said oh, you know, bring my wife in. And I think he said something she often she quotes this about him and he said that his first words to her was ‘I’ve just been explaining to your husband that he has cancer’. And so she was she had it head on probably as quickly as I did. So the story the story of the working with the consultant is that there’s never been any there’s never been any of the thing where of the consultant, which historically I believe happened a lot, where they told you very little or as little as possible. My experience has been that he tells it head on as soon as possible and immediately as possible so there is no absolutely no doubt. Which I have to say personally I would prefer that approach than being diffident or holding back or whatever. Though I think it is quite a lot to come to terms with, you know, very quickly. So anyway that after at that point, the other thing that I found extremely helpful as I did with the procedure when I had the atrial fibrillation, was the availability of a specialist nurse. And so because with all these things is that the, and particularly with where there’s cancer and where it does feel, because it is penile cancer it does raise all sorts of, well it raised some fears in me about what would be the implications. Would be able to have a any kind of sex life afterwards or whatever. The fact that it’s cancer at all, would it return? That’s probably the bigger one actually. It maybe makes a difference being older about what the implications are. But none-the-less it it’s quite a lot to work through.

 

David felt frustrated by a lack of information about ways in which he could help himself: he would have liked to know how other patients coped.

David felt frustrated by a lack of information about ways in which he could help himself: he would have liked to know how other patients coped.

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I think the thing that it probably that I’ve found frustrating at times is wanting to know right from the start about what was it I could do. And particularly with this lymph… with dealing with the remove of the lymph nodes which has been more of an issue I suspect really than the original operation for the penile cancer is the is what is it I can do for myself? How much should I be doing and not doing? Should I be physically exercising more? What about lifestyle? Diet? What about alcohol?  I went 6 months without alcohol after I had the lymph nodes removed and I’m pretty sure it did me a lot of good. The main consultant said the cancer consultant said it wouldn’t make any difference one way or the other. So I had a bit of alcohol since and I’m fairly con... fairly certain that I was probably better without it. But I think it really would be interesting to get a lot more data about what people do, what other people do and what their experiences are of dealing with the side effects I suppose and the social effects, you know. And it would be really important I think, really interesting to know a lot more about people’s experiences. And I think the, I think it it’s full of greyness. It’s not black or white and because what they say, what the consultant will tell me, the doctors will tell me, the nurses will tell me, the specialist nurse will say is well it all depends because everybody’s different. And of course I’m sure that’s right so I think giving specific advice is probably difficult.

But I think more experience, more knowledge could be gathered in these areas and I personally would have found it enormously helpful.
 

 

David found that nobody had ever heard of penile cancer. When he talks about it he finds that...

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I think I’ve my experience is pretty, you know, matter of fact. I think I think probably one or two are a bit baffled and never heard of it. Well nobody’s ever heard of it. I mean I don’t think I’ve ever… I’ve never spoken to anybody who, you know other than a medic or something, but err I’ve never spoken to anybody who has err has heard of it. And some people ask, you know, a bit more, you know, questions and… So but I think I was just a bit you know surprised but accept it. I think most people that I’ve, you know people I come across anyway, are more comfortable talking about cancer anyway.

If it just happens to be penile cancer but it’s does that make it more difficult to talk about? Or as we say it’s just testicular cancer or prostate cancer, which most people have heard of prostate cancer certainly, so I, you know, I’ve I did I suppose I felt at the beginning a bit ‘ooh ahh what am I going to say to people’ and then decide well I’m just going to tell them. And that seems to be the best way to do it really.

What kind of questions did people ask you?

I don’t think they’ve asked me very... what have they asked me? I don’t… when you ask me directly I don’t think that that anybody that anybody’s asked me very much really. I think the usual comment is ‘oh I’ve never heard of it’. So I say well it’s, you know, and then I’ll say ‘it’s rare’ and I’m trying to think of any one person who’s really asked me anything in detail. And I think I’ve probably been asked a couple of times about the surgery but I mean it’s usually me that tells people if I think they’re if I think if I think they are interested or want to know I think I… Actually when I think about it I suspect it’s other people are far more embarrassed about it or embarrassed about my embarrassment or something like that. I think that’s probably what gets in the way.
 

 

David found it awkward to keep a dressing in place after his reconstruction operation; his...

David found it awkward to keep a dressing in place after his reconstruction operation; his...

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The most awkward thing because they do a skin graft onto the end of the penis they take a patch of skin off your thigh and  that then has to heal up. So keeping the bandage on, finding a way of maintaining the bandage because I think I was in for it overnight. I can’t remember exactly. I think it was overnight one night And then you come home. So the issue then was, as I remember it, was keeping the bandage in place. Anyway that was that was solved because my family are very friendly with a with an ex-district nurse who lived next door but one or two and she was able to solve the problem with a with a which involved I think the use of pair of tights or one leg of a pair of tights to hold it in place. So that was a slight a slight macho issue.

But the, I think I went in about a week later and the stitches were removed and also the dressing was removed from the from the where skin graft had been taken because that started to heal very quickly. So the recovery from that was remarkably quick.
 

 

After his penile surgery, a nurse found a lump in David’s groin when treating him for atrial...

After his penile surgery, a nurse found a lump in David’s groin when treating him for atrial...

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And the nurse attending, one of the nurses, who looked at the dressing in the evening- you stay in overnight- and she said, ‘Did you know you’ve got a bit of a lump here?’ And I said well I had realised and I said that I said, ‘I have had cancer and I attend to have it checked, you see, immediately after I’ve got this operation out…’ This would again be about the middle of January and I think it was a Friday evening she told me this and I was going back home on Saturday. And on Monday morning I rang [coughs] the cancer centre. As… I spoke to I think it was either the, I think it was both the specialist nurse and the secretary… the consultant. And he saw me on Friday, the main consultant, and again did the physical visual check and he said, ‘I think that’s cancer’. Said, ‘We’ll get a scan done just to verify it but I’m, you know, I’m certain that’s I’m afraid you’ve got, you know, you’ve got cancer again’. So again he didn’t there was no you know holding back. So I again asked about what the, you know talked about it, what the prognosis was, what would happen next. And he said he would they would remove the lymph nodes and I may or may not need radiotherapy afterwards. So I think it was I was due in to go in... it was it was... I was due in originally to go in on I think it was March the 2nd. Which was very quick and I think it had took about 5 weeks after I’d seen him. And I’d had had the discussion with him because I’d, because of the operation I’d had on the for the atrial fibrillation catheter ablation process, I’d been on some blood thinners.

And so that was therefore a factor in the operation for the removal of the lymph nodes, so that it had to be off these. He said, the cancer consultant said, he would speak to the specialist who’d done the catheter ablation. But in the meantime I spoke to him. Well I spoke to the specialist nurse on that side and he the cancer specialist the catheter ablation specialist was there. And they said, ‘No you can come off it straight away’ you know in readiness for the operation. But that’s I well I made I made the phone call again to double check because I wasn’t aware there’d been a conversation between the two consultants and so I came, it meant I came off about 8, 9 days before the operation was due on March the 2nd. And I thought they’d done everything possible to make sure that this was this was this was okay. But then with about 3 days to go the cancer specialist consultant then asked the … he must have been asking at one of the meetings what had happened about this business of me being on Warfarin. And he then said, ‘Well if he’s only been off 8 days it’s not 10 days. It’s not enough’. So the operation was put back a fortnight.

So I did feel I did feel aggrieved about that because I’d done everything possible to signal, you know, this requirement and I felt it hadn’t it did put the operation back a fortnight. So but then I’d realised well what’s done is done. The slot’s missed so it will go back a fortnight. But in a way I could have done without that and it did feel it did it... the thing that seems to be a problem in health matters is always this matter of one specialist con. Working with another one if that’s what happened.
 

 

David developed an infection after having lymph nodes surgically removed; the District Nurse was...

David developed an infection after having lymph nodes surgically removed; the District Nurse was...

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Anyway I went in on the 16th. I had the operation and was out I was... oh no that’s right I was in for about eight days because the worry is about getting infection after the operation. I think this is probably a standard process. They thought I was clear. I came I came home for three days. The district nurse didn’t was got was very anxious about what, the redness I was developing, the soreness. So I went back to Accident and Emergency and they readmitted me straight away. So I was in for about another seven days after that. But again the treatment I had on the ward was excellent. The only delay was when I went in the second time it took ages to get the antibiotics and that was all to do with getting a prescription from a doctor which is always frustrating because that’s the only reason you’re back in. You know, you’re there and of course what you want is intravenous antibiotic. But it took I must have it took nearly half a day to get started on that. So that was that was kind of like frustrating.

But the general treatment on the ward on both occasions, with both the initial and the follow-up, was excellent.
 

 

After radiotherapy, David had itchy skin and lymphoedema; it took him a lot longer to recover...

After radiotherapy, David had itchy skin and lymphoedema; it took him a lot longer to recover...

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And I’ve that barely affected me, I felt a little bit tired until I got to about four and a half weeks into the six weeks. It’s every day for six weeks apart from weekends so it’s every weekday. And then the skin started to get a bit sore, some of it broke down but it did heal pretty quickly. It was it was exactly what they said would happen. And but it did it... I did start to feel more tired about three weeks in. And it was at that stage when I did start to feel some effects of lymphoedema.

So the recovery actually from the radiotherapy has probably has been more difficult than from the actual surgery itself, although I did have this after effects and therefore spent two weeks in hospital in effect or had three days at home. But the recovery is definitely slower from the radiotherapy. Though I’m told the amount of lymphoedema I’ve got is relatively slight compared with what could happen.
 

 

While he would want to see the evidence of effectiveness before using complementary therapies,...

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Well I’m much less sympathetic to complementary medicine these days. I that’s not to say I’d have been I’d be very happy to think about... you know as I’ve mentioned food, physical activity and all the rest of it. But I don’t necessarily consider that as complimentary medicine. I’m and also in terms of counselling therapy that’s fine. But I’m less... depends what it depends what you put under the bag of complementary, is that the word you used?

Complementary therapies.

Yeah complementary therapies. Yeah. But if we get into the realms of... oh God I can’t remember what it’s called now. It’s completely slipped. The one, that’s when you take millions of a percentage of a whatever. The, you know… I’ve lost it but the various the various I’d be err I would want to know. I wouldn’t turn it down but I’d want to know. I’m because I am more I’m far more sceptical than perhaps I once was with complementary medicines.

So you’d want to know about the evidence behind them?

Yeah I would. Yeah, yeah.
 

 

David thinks that his experience has had a marginal effect on his sense of masculinity but says...

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David thinks that his experience has had a marginal effect on his sense of masculinity but says...

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No I mean I think sex life changes as you get older anyway and it’s probably had a marginal effect but… it’s very slight and… masculinity no. It’s not had any … any effect on me. I mean I think if you, I expect it depends where you start thinking about masculinity in the first place, doesn’t it? But I mean I think... I think there’s far more to being a human being and far more to being a man than just simply being dependent on a penis. But not to say it’s not, you know, a very important part of the body obviously. But I don’t think it’s had the... in terms of how I see myself as a man, as a person it’s had no impact at all.

 

David had a sense of uncertainty about seeing the results of his operation but doesn't remember...

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How did you feel when you first saw the results of the operation of on your penis?

Alright really. I mean I…there’s a certain amount of curiosity or not curiosity or uncertainty. That you wonder how it will you know work and function, the rest of it. But I think I just accepted that this was happening and therefore it’s likely that things would look better and improve from the first you know from the first sighting of, you know, the first looking at it. I kind of again worked on this assumption it would be okay, you know. And it turned out it was so I don’t remember ever feeling any great concern. But again I mean I don’t... going on about it so much but I do think it had made a difference having that other big operation, you know. You get more… somehow the head get the mind gets more tolerant of these things [laughs]. And I think the other thing probably being older helps as well. I don’t know. Who knows? Who knows?
 

 

David never worried about having check-ups and assumed his cancer would not return. However, a...

David never worried about having check-ups and assumed his cancer would not return. However, a...

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Well what happens after that of course is very much I think the standard process. I think the... immediately after I was going in about every three months for a kind of visual check. And I was having scans probably every three months for the first… the beginning. And then I think it went to six months and I think the checks were six months. And so there was no there was no there was no reoccurrences, it at that stage anyway. It it’s strange because thinking back I’d just assumed... I think I wonder if it was something to do with the surgery being so good and specific and everything appearing to be clear and was well was clear. I just I think we rather assumed it would it would never it would never recur and that was it. And the original operation would be about I think it would be July 2008 so and then things went absolutely fine until early this year, 2011.

And I just made the assumption I mean I that that it wouldn’t return and I’d never felt concerned about having the visual check and physical check nor the results of the scan. I just kind of made the assumption all would be well and that was something in the past and it was almost as though I’d never really had cancer, just had this piece of surgery which didn’t really leave any particular difficult after effects.
 

 

David thinks that nothing has really changed although he's still waiting to find out the...

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And I’m still waiting to find out really the implications of the removal of the lymph nodes and the lymphedema you know, the radiotherapy. On balance I think I’ll get back to not quite to where I was but we’ll see. You know, we’ll just have to see. I shall go going back to the gym. I’ve been back a few times and I’ll be going back more and building up a bit more walking and I’m off on holiday so that will give me for a for 9 days so that will give me a lot more opportunity to do some more, you know, bit more walking around and back to climbing walls and very easy standard I have to say but I’m back to them. So we’ll just have, you know, just have to wait and see. But I mean if everything goes as it seems to be going there’s every chance that it won’t leave me with anymore effects than getting older is anyway. I mean if the cancer comes back I mean that clearly is another matter. I’m talking about it as though it’s not there of course... I’m thinking about the earlier questions now. But if it makes its presence felt in ways that aren’t helpful then that takes it obviously into another dimension. But generally the effects of the two operations back to the first operation, I don’t really say it’s had any major effect at all. And the effects of the second one it there’s a very good chance that that’s not going to have very much effect or any if we if the lymphatics. I mean the lymphatic system is having to learn to work without... you know, some bits really. And it will either do that or I think it will either get or get very close to doing that so…

 

Being physically active is important to David, so he worries about whether his lymphoedema might...

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Being physically active is important to David, so he worries about whether his lymphoedema might...

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I think the issue with lymphoedema which is still there is quite is more worrying in a way. How can it be more worrying? I think it’s it has this sense of uncertainty because I think being physically active and walking and doing and doing some… well it’s easy kind of rock climbing and stuff is and being out in the hills, being a bit off the beaten track, is a is has always been important to me. And I suppose getting older, I’m now just 70, that there always is going to be a limit to those things. And but this one feels as though it may be somewhat limiting. On the, but on the other hand I’m aware that the this is a this is a very likely side effect of both the removal of the lymph nodes itself but it didn’t affect me then and also radiotherapy to the groin area. It is a, it’s a very likely side effect. And I’m also aware that I’m probably fortunate in that it could be a hell of a lot worse and particularly I think aging as I understand it is likely to make it worse or increases the chances. And it may be that being relatively fit that that has been helpful in any case.

And they’re e also saying to me- I’ve still got to go back and see the radiotherapy specialist consultant to check what she thinks is the current state. That’s at the end of October end of this month. But what the specialist nurse and what the cancer consultant are telling me, there’s every chance that it may take 6 months or a year. But it should recover of its own accord because clearly the lymphatic system has got a lot of adapting to do.

But I think the thing that it probably that I’ve found frustrating at times is wanting to know right from the start about what was it I could do. And particularly with this lymph.. with dealing with the remove of the lymph nodes which has been more of an issue I suspect really than the original operation for the penile cancer is the is what is it I can do for myself? How much should I be doing and not doing? Should I be physically exercising more? What about lifestyle? Diet? What about alcohol? I went 6 months without alcohol after I had the lymph nodes removed and I’m pretty sure it did me a lot of good. The main consultant said the cancer consultant said it wouldn’t make any difference one way or the other. So I had a bit of alcohol since and I’m fairly con... fairly certain that I was probably better without it.
 

 

David believes that at first you must accept the diagnosis and then you can move forward.

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David believes that at first you must accept the diagnosis and then you can move forward.

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I think it’s very difficult. I think... probably the main thing is to... I think it’s with lots of things in life I think the first thing is you’ve got to accept it and talk about it and accept it. And use it as a use it as a way of trying to focus on what’s important to you and what’s important… you know and a way of moving forward. And I for one reason or another on the whole I found that relatively easy to do. But it’s very difficult… you know, other people’s experiences are different and histories are different and…

I think the key, in my experience at least, is having to accept the thing and then work from it and then and then doing what you can from it and accepting and having the... you know, finding out what’s fortunate in your life and working with that. And… you know but… you know, I’ve been in a relatively good position on those things as well so that’s what I would say anyway.
 

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