Penile Cancer

I came home. I’d had a scan in between me penectomy and leaving the hospital. I came home and about… maybe 6 weeks later, I was contacted again by the same gentleman. And I went over and he examined me and asked me how things were going on. Now obviously at this time, at this point I was sitting down to wee. no I do beg your pardon, I wasn’t, I’m getting confused, I’m getting confused. I’ll bypass that, I wasn’t sitting down to wee, because I still had my bag on, I do apologise. But the scan had come back clear but he wanted to remove some lymph glands, more of a preventative thing rather than the lymph glands being infected. I didn’t want to, it something, it was a bit of a curve ball, I hadn’t expected to have any more surgery.

So after you had your penectomy you had your lymph glands operated on. How long was it between the two?

It was about… I had my penectomy in the December, I believe. I may be wrong. I think it was in the December. And then my… lymph gland operation at the start of March the following year, so it’s March ’10. Not long after, it wasn’t long after I know. And I think that’s one of the reasons why it took me so long to get over it, you know. I’d not long been through an awful operation. Making progress, thinking you’re making progress, and I was making progress. But to be fair I was… I was given the option. It wasn’t a life or death operation. It wasn’t life-threatening. But what they’d said was… and I was given the option and I was given time to think about it as well. And they’d said… they’d done a scan and they’d not… there was no sign of any infection in my lymph glands. Although you can actually be microscopically infected and it not show on the scan they told me… But what the gentleman wanted to do was to remove- I think he removed twenty, I can’t remember- twenty lymph glands that were the most adjacent to my cancer. and he said, ‘It’s preventative. We just… we want to be one step in front of it. We want, don’t want it to rear up again. We’ve taken it out. Your lymph glands are clear. But there’s always a slight chance so if you give me the permission I want to do this operation, get them out, we’ll do a histology, we’ll do some histology on them when we get them out. And for me it were a no-brainer. It was an absolute no-brainer. I’d had the big one, which was traumatising enough in itself. I said, ‘Yes we’ll go ahead and we’ll get that done’. Went in again, had that done and then I had some problems after that. But then when it came back that the histology was clear on the lymph glands, again that’s fantastic news. You know they were the ones, it was explained to me that they were the ones that were most adjacent to me cancer so if there was going to get infected, if there’s going to be any infection it would be there. And they were all clear so again another step forward and they decided to go ahead and it was a success.
 

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.
 

They looked at everything and they said, “Right, we’re going to do another op through your nodules because we’re not – we’re virtually sure everything’s clear but there’s just one nodule that might be a bit dodgy so I don’t want to leave it and then realise we should have done something about it” so told me come back, it’ll be about another week, ten days and again I came in two days earlier to have all the usual checks that you can have, you can have the operation, the pre-operation checks I think they’re called. I came back in, had the second op which funnily enough was a little bit more painful when I came round, but only for two or three hours, and then I think I was only in hospital about five days that time. It should have been seven or eight and they came round and said, “You’ve recovered quite well from it, you can you can go home and we’ll contact you in about a fortnight to three weeks.” During this time while I was away the Macmillan nurses who is at the hospital rang me two or three times to see how I was getting on etcetera and just asked a few cursory questions about, you know how the wife was and everything. “Fine, everything’s fine.” And um… then they arranged another appointment for me to go and see them, which I did, with the wife yet again and we went in and they said, “We’re terribly sorry Mr [name], we’re going to have to do another little op. This time we’re going to do further up for some more nodules. Those ones which we had were alright, the one that we thought wasn’t cancerous but it wasn’t quite right but what we can do is just check all the nodules now we’re doing it.”

You mentioned that you had to have two more operations, is that right?

Well I actually finished up having three more. I had the main one where they took the cancer, then I had the lymph nodes at the sides and the groins done and then when they were done they said, “Ooh I think we’d better just check the ones in the thing” so I went back in again, that was only, I was only in for three days with that one. That was the only problem with that was I had a drain, and most people it lasts three or four days at the most, and for fourteen days I still had it in there, but that was just one of those things. And then the last one was because I had all the bladder problem because of the, what they’d, what he’d done – poked about in there and while he said, “I’ll have you in and I’ll do that for you” and he did that and which basically wasn’t connected to cancer but he just did that. As I said he came up a couple of mornings later when I come round he said, “Hello Mr [name]” he said “while I was poking about in there I had a look at your prostate” he said “I bored that out” he said “you’ll be peeing like a twenty three year old from now on” and touch wood and whistle I have been so, it’s all been brilliant [Chuckles]. And basically everything in some ways I’m better now than I was before I found I had cancer because I was getting up a couple of times during the night to wee in those days, nowadays I don’t get up during the night [Chuckles] so… so I’ve got a benefit [Chuckles].
 

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.