November 2011 I found a lump behind the back of my knee and it was confirmed my cancer had returned.

I then underwent surgery to remove the lump in December 2011 and then radiotherapy in February or March 2012.

but for this one they said it was, they thought that they could easily get this tumour remove it with surgery, and then give it quite a lot of radiotherapy so I went in December two thousand and eleven, for an operation to remove a tumour from the back of my knee, the surgeon thought hed got it all and then in February 2012 I started 30 sessions of radiotherapy, obviously could, it’s on a kind of isolated limb, the doses of radiotherapy they can give are quite big compared to what they could give for example if it was next to a main organ. So they gave it a good zap of 30 sessions of radiotherapy I had which involved going to the hospital each day, an hour there, having the radiotherapy. It took about half an hour if they were on time, and then an hour back so we did that Monday to Friday every day for six weeks.

I did that, the symptoms of that were just my left leg started to get really stiff,

These are your side effects of the radiotherapy?

Yes it’s the side effects of the radiotherapy, my left leg started to get really stiff, cos there were tumours in the back of my knee so it was obviously, that’s where your leg bends and as well the skin started to get quite sore around the area and as well I lost all the hair, so I had just a bald patch on my leg. It looked a bit weird.

Well that’s absolutely painless when you have it. They mark where they’re going to put it with a tattoo and then they find that point every time.

But towards the end of that of course it burnt all my skin off and I was raw and I was told when they said like you’ve had enough of that to go home, find an old bed sheet and make a poncho so you could hang it off your shoulders and not rub on your body.

And they gave me a lot of E45, a big tub of it and I used that. Well actually I went up the surgery and they, the nurse up there put it on the first day but I said “You let me have the stuff I’ll put it on myself,” so they let me have the stuff and I then put it on.

How long did it take for the burn to heal?

About three weeks, yeah about three weeks I think yeah.

Was it very painful?

Well I mean it was like lying in the sun and having heavy sunburn and all your skin falls off you know. It was yeah it was quite sore. It’s all part of the treatment though isn’t it really, yeah.

[I had] severe pains due to the effect of the high powered x-ray on my bowels and possibly the glands and muscles surrounding it. As the radiotherapy course was getting towards the fourth and the fifth I had effects of nausea and I could not eat food, mainly on liquid diet at that stage until the entire six sessions were complete.

Early stages it was possibly within the first hour I was able to recover and even take a train back, but the third, fourth, fifth and sixth I think I was not able to drive my car and I had to depend on friends to take me down. And the recovery time of the fifth and the sixth were a few days and that was fairly daunting because I could not go anywhere close to food at all.

Yes the fifth session I did not know how it was going to affect me. That gave me a lot of anxiety over the final sessions. A friend of mine took me down and after the session I just collapsed in the car and I think I slept all the way back during the two hour drive back. But I recovered from that over a period of three days but I could not eat solid foods for about a week or so.

Sexually in terms of having an erection and stuff like that I think there is not permanent but near permanent damage.

And again you see with the radiotherapy I never got told um, because it came through from the back to the front and burnt everything. Everything like you can imagine getting burnt on your skin when it goes all tight, that’s what actually happened down below as well, so everything sort of shrunk right down.

Now I had the option to go and have some caps inserted to try and stretch it again but I’ve never ever bothered, I just thought I’ve gone through too much at this point in time, just leave it, so it’s all been left on the wayside at the minute.

Oh God it was horrendous. Quite funny really, I used to like um, it was sort of quite nice, it was like May time and it was quite summery and that outside so I basically just sort of walked about with nice flowing skirts on you know and I think I um, I had a bit of cream.

Oh and I think they gave you something to actually flush up your vagina as well, I can’t remember what it was called but I remember having to squish something you know up into the vagina which would help, probably relieve the burning sensation that was coming through you know.

Unfortunately my sex life it ground to a halt after that because er that is the only thing, well one of the things that has niggled me ever since. The radiotherapy, radiotherapy had done so much damage in that area that it left me impotent.

And did they tell you that might happen?

No they didn’t tell me this might happen no, no but you know they’ve said well it’s just unfortunate.

Nobody mentioned it?

No. But they’ve given me, told me all sorts of things and of course I couldn’t, remember when the dreaded viagra came out. I wasn’t allowed to have that because I’d had a heart attack, of course. I wasn’t allowed to go on it anyway not that I know whether it does any good or not but there are plenty of jokes about it.

And so what’s your feeling about that?

Well I have I’ve always felt very bitter about that mm I’m being perfectly honest with you it has it’s upset me a lot to think that but then again somebody said well after my cancer operation etc. etc. you’ve got, and when I was going to be fitted with a permanent colostomy, you take the choice between a bag and a box.

I really wasn’t, I really wasn’t told a, a great deal about it and I didn’t know what questions to ask really.

I’ve read about it since then. I’ve read quite a lot as times gone on, and I’ve realised you know that I could have had more problems. It hasn’t affected my sex life for instance which would have been a bitter pill to swallow. I mean I realise I’m very lucky that I haven’t had any, any damage because obviously everything is so very close together down there. So, I’ve been very lucky.

Looking back, with the benefit of what you know now, do you think they should have told you about possible long-term damage from radiotherapy in the pelvic area?

Yes, I think they should have done. It wouldn’t have made any difference to me, I still would have gone ahead with it. I was really convinced that that was the right treatment, it was giving me the best possible chance and so I would have gone along with it because I just wanted to live.

So I would have gone ahead with it but yes, I think, I think really you should be made aware of this. Yes, I think so. It, it may be that some people would be frightened and perhaps wouldn’t want to go ahead with the radiotherapy and that would be an awful shame but I do think it, it is your right to know, to know these things, yes.

What did they tell you about the uh, the treatment before you had it? Did they tell you anything about possible side effects of the treatment?

No, they didn’t say anything like that. I saw an oncology doctor first and he said to me, he said “That my job really” he said “is to reduce the polyp so that, the surgeon can remove the, remove it properly you see”. He said so by, by him using this, treatment it would reduce the polyp to a smaller size so it would be easier to take out. But then he said to me “I don’t think you want the, the operation”. I said “Well no, not if I can get away with just the x-ray treatment, I’ll have that”.

Which I thought after, after I’d had that treatment I was clear for three years, that it had completely gone. You see, if I’d have known that was gonna come back again I would, I would have had the operation immediately, rather than have the x-ray treatment. Ridiculous having the x-ray treatment if you’ve gotta have an operation afterwards.

So I thought well if I’d have had the operation first, it would have saved all that problem, most people that had this colostomy operation don’t have this problem because they don’t have the x-ray treatment, they just have the, have the, have the uh colostomy and uh, and they’re more or less normal. They don’t have any bottom trouble, even if they’re sewn up below, they don’t have it, it’s the x-ray that done that see, that made it worse.