Simon - Interview 08

Age at interview: 65

Age at diagnosis: 63

Brief Outline: Simon's foreskin had been tight for some time, he decided to bring this up when attending his GP for another ailment. After a period of monitoring, he was referred to a specialist who performed tests. The results revealed Simon had cancer. Simon went on to have a total penectomy.

Background: Simon is a married white British male in his mid 60s. He has two grown up children. Simon is a trained mechanic and currently works full time on the repair and maintenance of heavy goods vehicles.

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Simon had recently been diagnosed with AF (atrial fibrillation) and was attending his GP surgery with a chest complaint. Simon’s foreskin had been tight for some time, but up until this point he had delayed any action, he decided to mention it to his GP. Simon’s doctor did not think that the problem was anything too serious, suggesting that if he could still get an erection there was nothing to worry about. Accepting his doctors opinion, Simon carried on as normal until green smelly discharge began seeping from his penis, Simon was extremely alarmed and began to panic. 

 

Simon returned to his local GP surgery and saw a different doctor. This time the doctor appeared to be more concerned and referred Simon to see a specialist urologist. A fortnight later, Simon attended a local hospital with his wife for a consultation. After a brief wait Simon was called to the consultants office, he was expecting bad news and thought that he may be required to have a circumcision. The consultant gave Simon an examination and almost immediately told him, bluntly, ‘you’ve got cancer’. Simon was shocked and his wife was very upset. 

 

The consultant told Simon that he would conduct a small operation to take a tissue sample to be tested, a biopsy, Simon was told this would provide a more concrete diagnosis. Simon was asked to wait at the hospital until the evening to have the biopsy. Then, around half past seven Simon was called into surgery. The operation was conducted under local anaesthetic and therefore Simon was fully conscious throughout, but felt no pain. When Simon saw the results he was alarmed to see that half his penis had been removed. 

 

Simon found the wait for the biopsy results extremely difficult. He was still working and struggled to manage the bleeding and discharge from his penis. Approximately a month later the results of the biopsy had come back and Simon was asked to attend an appointment at the local cancer hospital. At the appointment the consultant confirmed the original diagnosis and advised Simon that he should have a total penectomy, a total removal of the penis. This news was more shocking than anything that had happened previously. Simon felt that the only real option he had was to have the surgery and was booked in for an operation two weeks later.

 

Leading up to the operation Simon was quite scared, and feared he could die. The operation was performed under general anaesthetic and therefore Simon was fully unconscious. After the penectomy, Simon stayed on the ward for two weeks to be monitored. 

 

Since the penectomy, Simon has required a further operation to remove his sentinel lymph nodes. He found this operation quite invasive and sore afterwards. After recovery Simon has been able to continue his employment and whilst he has been able to urinate standing up with the use of an aid, he sometimes finds this difficult to manage when out and about. Simon also has had several urinary infections which have been quite painful. One of Simon’s biggest concerns since the operation has been the impact the operation has had on his relationship with his wife, and he worries about her wellbeing. Simon however, tries to maintain a positive outlook and is hopeful that he will be okay in the long term. 

 

Simon didn't expect so much of his penis to be taken away when he had a biopsy performed.

And he said, ‘We’ll do they oper... I’ll do’ what, I forget what they call it, when they cut a bit off …n ah, they’ll do a biopsy you see. So I hung about till half past seven at night in this hospital and expecting this biopsy. Next minute I was whisked in and I had my, half my penis removed totally, and by a local anaesthetic.

The worst that Simon was expecting was that he might need a circumcision, so he was shocked to be told, 'you've got cancer'.

So after about a fortnight I went to, it was a private hospital but they did NHS work, just, and I were, I was expecting, expecting at the worst, that I’d have a, what do they, what do they call it err total removal of the foreskin right, the circumcision, that was really what I was expecting. So I got, I got there about three o’clock in the afternoon and we just sat down like, a fancy place you know cup of tea and all. Next minute I was whisked in to see this the urologist consultant and he just felt at it and he said straight away ‘you’ve got cancer.’ Like I was totally gobsmacked.

Simon was worried when he received his diagnosis, but when he got to the cancer hospital he felt everything was going to be alright.

So what were your immediate thoughts and feelings?

Oh absolutely, absolutely gobsmacked really. I were, I was quite worried, I were quite worried at the time, but. Once, once I got to the main cancer hospital in [city] it were totally different then. I felt like I was being informed and being, I was on the right road, you know [hesitation]. Once I got into there I was, he were a professor and he was absolutely clued up you know and I really felt that everything was going to be alright then. I hope it is.
 

Simon has found it difficult passing water and he has had a couple of urinary tract infections.

Well like I say, it’s difficult, it’s not easy passing water where I am, you know. It’s alright if there’s proper toilets and you can take your trousers off that’s no problem but it’s just that if you can’t really go in urinals like you would before and if you’re out and about and you’re bursting... it’s difficult because you’ve got to more or less to get undressed. That’s about the worst of it really. I did have a couple of water infections but they’ve gone now like, they were, they were quite bad.

Simon was grateful he had been given a new opening for his urethra in his groin rather than elsewhere as this enabled him to urinate standing up, which was essential at his workplace.

I was told at first that I’d urinate from a different place altogether but the surgeon there managed to just do it so that I [hesitation] it comes out where, where it did before, which has been a lot easier for me. Because I couldn’t in my job I couldn’t sit down, to urinate because there’s no toilet facilities where I work. You know I‘d have to I’d have to walk half a mile and back, you know like. I take water tablets so I pass water about ten times in a morning. So [chuckles] by the time I did all that I might as well not bother.

Well like I say, it’s difficult, it’s not easy passing water where I am, you know. It’s alright if there’s proper toilets and you can take your trousers off that’s no problem but it’s just that if you can’t really go in urinals or like you would before and if you’re out and about and you’re bursting... it’s difficult because you’ve got to more or less to get undressed.
 

Simon would like health professionals to give patients a bit more time when revealing a diagnosis.

Apart, apart from perhaps a bit of a slower intro into it would have been better instead of just saying, you know, he were totally brutal the way I were told. They reckon it’s the best way of telling you. So, you don’t know. You know, it was a shock. I mean I were only there in my mind to be circumcised and to be told all at once that ‘you’ve got cancer’ you know it were like being hit with a shovel at the time.

Simon was quite scared leading up to the operation.

Well [hesitation] I were quite, I were quite scared really. Quite scared, but. That first time I ever went to cancer hospital you know, you’ve got a dread in your mind. If somebody says ‘cancer’ you... think straight away you’re going to die within weeks don’t you. From what you say I mean it’s not like that but you’ve just got that, when somebody says to you ‘that’s cancer’ you think oh no! like. It, it’s quite shocking then and you. I was worried at first definitely.

Simon had been self-employed and didn't have sickness insurance, so he closed his company, moved to a smaller house and got a job; he has no sick pay, so took holiday when having treatment.

You know when I first started I was self employed, I had a garage of my own, a business, which I had to let go because you can’t be self employed and be ill, so I had to pack that in, which, which I loved, and get a job. You know, which is, I still don’t get sick pay where I work now but at least, you know you see when I had all these operations I, I used my holidays because, because I didn’t get sick pay, I mean you’ve still to live haven’t you know even if you’re ill. You know that’s a problem for anybody I think that’s ill... managing off what money you can get. And like I’d, I think both them operations I had I had to use my holidays, cancel my holidays and use my holiday entitlement so that I could get the operation. Because there were no healthcare, no health insurance where I worked you know, even though it’s a massive power station there’s no health care or owt like that.

So the financial side….?

Oh, there’s a big financial side to it, yeh, yeh. You know you’ve, you like just stop straight away, you’ve still VAT to pay and I had to wind my business up and accountants and this and that off money what I’d managed to save which I haven’t got now, like. We had to get a smaller, we had to get a smaller house and, we had quite a big house before and we had to get a smaller house and manage, you know.
 

Simon has check-ups about every four months where he is examined. He has the support of three Macmillan nurses if he has any problems.

I have check-ups every about four, about every months I think. And that’s been, you know they’re very good like about that. If I need anything I can ring them three Macmillan, I’ve three Macmillan nurses that were like on my case, I just ring them and I have any problems. Like when I had a couple of water infections and they got that sorted out for me. Not a lot, not a lot of help from my own GP, I thought you know, but they’ve been very helpful at [city], very helpful.

Do you have any other tests done when you visit the consultant?

No. I’ve had just ‘how do you, how do you feel?’ and pressed and poked and that I’ve, I’ve had no scans or anything since.