John - Interview 05

Age at interview: 58

Age at diagnosis: 44

Brief Outline: When taking a bath John found a hard lump in his groin. A biopsy revealed the lump to be cancerous however, the specialists believed that this lump was not the primary source of the cancer. A partial circumcision revealed a patch of redness on the penis. John was given chemotherapy and radiotherapy.

Background: John is a white male in his late 50s. John is an acclaimed artist who works in a variety of mediums. John is currently single.

More about me...

It was December 1996 and John, an artist living in London was feeling a bit under the weather. When taking a bath John found a hard lump in his groin, he immediately thought that something wasn’t right. As Christmas was close his first thoughts were to postpone any check up till after the holidays, however he quickly realised he needed to seek help immediately. 

 

John went to see his GP who on examining the lump recommended that he see a consultant for tests. Over the Christmas period John was extremely worried about what the consultant would find. After the holiday period John had an appointment with the consultant who stated that the lump ‘could be a tumour’ and said John would need to have a biopsy to find out. 

 

Several weeks past, and over this time John’s paintings were becoming increasingly dark, possibly reflecting his anxieties around this time. On the day of the biopsy John attended a pre-operation meeting with the nurse specialist. John and the nurse discussed the possible outcomes of the biopsy in the meeting, one of these outcomes was cancer. After the meeting John underwent a few routine pre-operation procedures including weight checks and anaesthesia choices. 

 

The biopsy went smoothly and a few weeks later the consultant revealed in a meeting that the results of tests revealed that the lump was cancerous. The tests did not however reveal whether the lump was the primary source of the cancer or whether the primary cancer was elsewhere. A series of exploratory tests were conducted over the course of two weeks to attempt to find the primary source of the cancer “I had cameras in every orifice” says John. After these tests the consultants had still not found the primary source. By this point John was realising how serious the situation was, one consultant stated ‘don’t make any plans for Christmas’. 

 

One consultant suggested looking at John’s penis. His foreskin had always been tight and it was awkward to draw it back, so it was suggested that he have a circumcision. John had a partial circumcision. On the head of his penis the consultants found a patch of redness, John looked at it and thought ‘that doesn’t look good’. The consultants said, ‘that’s it’.

 

After a wait on the ward John went on to have a consultation about the discovery. The consultant told John that there were a number of treatment choices, chemotherapy, radiotherapy and surgery. John questioned the term surgery, ‘well, amputation or partial amputation of the penis’ said the consultant. Whilst John was aware of the seriousness of his situation he was not keen on the idea of surgery. Back on the ward, John had a chance encounter with a consultant who had been working in France. After a quick examination the consultant said, ‘In France we would try radiotherapy’. 

 

By now it was summer 1997, six months after his initial consultation. Over this period John had had an operation in his groin to remove the lump and had experienced several infections from the operations he’d experienced. To John’s surprise, none of the consultants seemed to be in a rush to treat the penile cancer. One consultant recommended the use of Interferon, a strong form of chemotherapy. John was asked to inject himself with the drug, as John was squeamish this was something which he didn’t find easy. Over the two months he was taking Interferon John felt really low, within two days of taking the drug his nails began falling out. Throughout this period of treatment John’s life view began to change, he began to look after himself better, eating healthier, not using too much energy and living more in the moment. 

 

One weekend, after two or three months of being on Interferon John felt really bad. He had ‘an explosion’ in his groin where he had the operation. He went to the GP that weekend who advised him to go straight to Accident and Emergency. On arrival at A&E John had a large eruption of fluid from his groin. Luckily a Macmillan nurse who had been assigned to John was in the hospital and was able to inform A&E staff about what they were dealing with, therefore John was given treatment to stabilise his symptoms.

 

The next day consultants discussed surgery options with John. John was told that they would have to remove the Lymph nodes in his left groin, and also have to do ‘something’ about his penis, either amputating it or partially amputating it. John said that he was happy for an operation to be performed but asked if the surgeons could leave the penis for now. 

 

During the operation the surgeons found a large amount of cancer in the groin. After the operation John felt incredibly deflated and despite surgeons emphasising the seriousness of his condition, John could not face further surgery. At this point John remembered the conversation he’d had with the consultant working in France and suggested radiotherapy as an alternative to surgery. Reluctantly the consultant accepted John’s request and referred him to the radiotherapy department. 

 

John had to attend a meeting to make a mould of his penis, which would direct the radiotherapy treatment to the required area of the penis. The actual radiotherapy only took three days, two sessions of six minutes each day. The treatment made John’s penis very sore duringthe treatment and this was at first awkward for John’s girlfriend at the time, who was a bit squeamish. The penis however healed up quickly.

 

After the initial phase of radiotherapy the consultants were happy with the results, but still had concern over the cancer found in John’s lymphatic system. They wanted to given him twentyfour hour cycles of continual chemotherapy for a week and radiotherapy  to the whole of hisbody, John was told he would be given as much treatment as is possible without killing him. John accepted and underwent this treatment over Christmas 1997. 

 

Today John is healthy, however has recurring health problems related to the treatments he has had. These include Lymphodema and cellulitis. His penis although sensitive is fully functional.

 

When in the bath, John checked himself and was concerned to find a lump on the left hand side of...

I just happened to be thinking about things you hear on the radio and stuff about checking your body and stuff and I just seemed to find my way to doing that in the bath one day and I was just feeling around my groin and I just – I don’t know why I did it, I just did – and then I came across in my left hand side in the groin, I came across this lump and it just seemed really strange and I sort of pushed it and it was like really solid and I just thought ‘this doesn’t feel right’ and I felt the other side and there was nothing there and I just knew there was something.

John had always had a tight foreskin, and as part of his investigations he had a circumcision,...

And then for some reason they decided to do...my foreskin was tight and that was a thing I’d always known from a kid and it didn’t impair my love life or anything but, and I wasn’t the sort of person, you know you hear of these doctors on the radio saying “check yourself everyday”, I wasn’t the sort of person that used to look at my foreskin and see if it was alright but it was a fact that it was slightly difficult to pull it back. And... so one of the consultants, and the great thing about the National Health is you have all these people on it, all these different people, students, consultants, all these different people, so you’re getting people, all these people from different angles are thinking of ways to go forward, which I’ve always found brilliant actually and so you do, it’s a scatter approach so you do, you never know – there’s always hope in that I’ve found. And somebody came up with the idea that we should do – “maybe that’s the problem, let’s do a circumcision” and then they did a circumcision, a little bit, partial circumcision it’s called, so, and that revealed on the gland of my penis that the primary source was the cancer and you could see it.

One of John's consultants suggested that he undergo a circumcision: this revealed a red patch on...

And then for some reason they decided to do... my foreskin was tight and that was a thing I’d always known from a kid and it didn’t impair my love life or anything but, and I wasn’t the sort of person, you know you hear of these doctors on the radio saying “check yourself everyday”, I wasn’t the sort of person that used to look at my foreskin and see if it was alright but it was a fact that it was slightly difficult to pull it back. And, so one of the consultants, and the great thing about the National Health is you have all these people on it, all these different people, students, consultants, all these different people, so you’re getting people, all these people from different angles are thinking of ways to go forward, which I’ve always found brilliant actually and so you do, it’s a scatter approach so you do, you never know – there’s always hope in that I’ve found. And somebody came up with the idea that we should do – “maybe that’s the problem, let’s do a circumcision” and then they did a circumcision, a little bit, partial circumcision it’s called, so, and that revealed on the gland of my penis that the primary source was the cancer and you could see it. It was like a little patch of redness and it definitely didn’t look, it didn’t look good – you thought ‘oh that’s trouble.’ And then they thought ‘that’s it’.

John had an operation to remove lymph nodes from the left side of his groin before having any...

Then they discussed this operation they were going to do and I, the consultant surgeon was talking about “we’re going to have to go into the lymph nodes, remove lymph nodes in your left leg, in your left groin then if we feel necessary we’ll have to do something about your penis. We’ll have to either amputate it or partially amputate it.” And I felt at the time that I wasn’t happy with that and I said “I’m happy to do the operation, I know you’ve got to do this operation [they were saying it was to save my life] but could you leave it at – leave the penis alone at this point” and they said “yes. Ok.” So you have to sign what they’re going to do and I signed a form that said that they were going to remove the lymph nodes where necessary and tell me what they’d found when they’d finished. So I came out of this operation and I was – that was the one time when – I was really, I was on an air bed and I couldn’t walk and I’d had the wind knocked out of my sails as you might say and I was lying there and I was surrounded by– the bed surrounded by all these nurses and doctors and consultants and that’s where in my paintings these images of birds sort of came, these birds sort of looking round me not really looking at me, not knowing where to look and I knew there was panic. And they said, the consultant said, “I think this is really serious, we’ve found a lot of cancer in your groin and removed the lymph nodes we’ve had to remove and we’re going to be really… we really feel that surgery is the way forward and we need to do it fairly soon” and I just felt I couldn’t face another operation.

John went to a special place to have a mould made of his penis in preparation for radiotherapy

So then I had to be measured up for a mould and I went to this basement in London and I went for my appointment for the mould. So they took me, so I waited outside and then they said, “Ok, come in” and I went into this room and there were all these moulds around the room and I thought ‘what’s going on here?’ and they said, I said “ Are all these moulds of men?” They said, “Oh yeh, yeh” and I realised then, as I was saying earlier, there’s a lot more of it about than we imagine you know. And  if ever you want an inferiority complex just go into one of those laboratories because I was saying “what! That’s a real…!” “oh yeh, that’s a man, yeh, it’s an enormous thing.”So, I had the mould made and then the funniest thing was being in a waiting room to have a mould made of your penis for penile cancer and sitting in a room with two men who just did not want to talk and we were all just very nervously looking at each other and I’d say a few things and it’s, just shows you how difficult it was and how much support people need to clearly be able to…. and it’s still is, penile cancer is a… it’s funny, I’m relaxed about it, I think that’s what I have, what I live with but it still terrifies people, it’s like much more than breast cancer really, I talk to a lot of women about that.

John had six minute bursts of radiotherapy twice a day for three days, and his girlfriend felt...

But anyway, so then I had the radiotherapy and it was only actually three days of morning and night, it was like an appointment, come for three days, six minutes in the morning, six minutes in the afternoon. I said, “Is that it?” and they said “yeh”. And that’s why I was thinking about my girlfriend because at that point, when I had the radiotherapy, the actual three days of radiotherapy, I saw her the day after or something and for one day she was a bit squeamish. The nurse told me, they’d said that a lot of people split up at this point, there’s too much for them to handle. And of course the thing about it was that it had this amazing effect on my penis, it sort of exploded and the [hesitation] it was incredibly painful and sore but then remarkably it all healed up very quickly. So that was extraordinary.

John injected himself daily with interferon alpha for two months; it left him feeling really low...

So then I started the Interferon and this went on for a couple of months over the summer and that made me feel really, really low and it had this effect within a couple of days of all my nails falling off. So it’s quite a strong, powerful err drug but the idea of it was that it would help the immune system and it would help fight the cancer or... help the body deal with it and make it… and I felt that it was sort of preparing me for maybe things that they would do later on which would be helpful.

John tells us how his penis was incredibly sensitive and he was vulnerable to infection.

You have all the problems of dealing with a – you know my penis is incredibly sensitive, it’s vulnerable to infections and I’m in and out “is this bad?” “No” “here’s another thing come up, oh no” “that’s alright,” you know swabs, all those kind of things. The lymphoedema, the cellulitis that is a result from all the treatment which you then have to live with, you have to manage it. You can’t….luckily what I do is I work for myself so it’s not so important that I’m... at times I just have to be in bed or I can’t do things.

After his biopsy John had an infection. John describes the impact of the infection.

I had a problem with operation when I first had it, when I had the biopsy which led to an infection which is another thing which is part of my whole experience is the constant infections from operations etcetera which is a whole other thing that you have to live with and handle which are far worse than - actually the symptoms seem to be far worse than the actual cancer is, you know. I had this sort of explosion in my left groin which I went to the, that weekend, on the Monday I went to the doctor and I said, “I’m not sure if I’m over reacting but do you think I should have this looked at?” and he said “you’d better go now to Accident and Emergency” which I did. And at this point I was beginning to – people were beginning to know me in Accident and Emergency, I’d been in a few times with different things and I’ll go to the doctor just to check and saying “oh no, you’d better go and have a….” and I was taken in and there was this huge, it was like a volcanic eruption in my groin, and it was excreting fluid, and disgusting, and I really thought it was dangerous and it was getting worse every minute and I was in hospital, in Accident and Emergency, waiting to be – I was sized up ready for operating on and for some reason a Macmillan nurse who had been assigned to me earlier on – they talk to you about everything and talk to you about all the back up things that are available – she happened to be in the hospital and saw that I was in there and was able to tell the people that were dealing with me to stop and to take me… so they took me out of the Accident and Emergency ward and brought in the consultants the next day who were treating me and they decided that they had to do an operation but I was incredibly fortunate because apparently if the Accident and Emergency people had gone in they wouldn’t have been able to deal with it because they wouldn’t have known the whole background etcetera and they wouldn’t have realised I shouldn’t have been operated on at that point.

John talks about continuing his relationship through his radiotherapy treatment. He says it is...

Meanwhile I have to say that through all of this, talking about moulds and penises and everything is that it’s important to remember that I had a loving relationship, I had a lover all the way through who I’m still great friends with although we’re no longer lovers, but she. We were continuing our relationship, physical relationship, and I found that really helpful and that’s a whole other area. I think it’s good for people to talk about the things I talk to people about and I’m interested in this question of not being isolated by the fact that you’ve got cancer or any sort of illness really. I mean, now, I mean I look, you know, I look ok but it can be frightening if I take my clothes off after all the treatment I’ve had, all the radiotherapy, chemotherapy, surgery and everything. So that’s an important thing for me.