How did you feel when it was discovered that you were going to have to have another operation?

Dreadful. I just, as I said before, I felt a bit like a ball being hit up against a wall. Every time blood tests were showing that it was clear, CT scans were showing that it was clear, and then you have another one and “Oh, well, I’m very sorry but.”

It, I, it’s very difficult to explain really. I didn’t, I just knew that I had to, whatever they said that I had to do, I had to, I had to carry it through. Because I knew that once they’d done the operation, once I’d got the other side of that operation I’d be alright.

And I said that to myself every time. And I said it to people, to friends. You know I said, well when I, when the time was veering very close to, to actually going in to hospital for the next op, they’d say to me you know, “How are you feeling?” “I’m frightened, but I know that once I’m the other side of the operation I’ll be alright.”

Then in November 2011 I found a lump and literally that’s all it was, just a painless lump behind my knee I underwent a few biopsies and there was concern that it was cancerous and it was confirmed it was the same type of cancer I’d had previously i.e. it was bowel cancer so but it was, so it was bowel cancer that had spread, so it was metastatic bowel cancer so at this point I kind of had no bowel cancer in my bowel because that was removed from surgery, but before they’d removed it, it had already spread to my leg. So I’d technically got bowel cancer in my leg.

I was a bit gutted, 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 about two months later they did a scan and it was confirmed the tumour was still there, which they couldn’t believe because a) they thought they’d removed it all b) the area, all this radiotherapy and c) not only was it there it was back and quite big.

Yeah so I had three months of that next lot of chemotherapy and then the scan results showed that the tumours had continued to grow.

In your leg?

Yes. So at this point they were discussing an amputation so at this point the only tumour they could see was the one in my knee, so they were discussing an above knee amputation. So with obviously after the first consultation we were sent home to kind of discuss this because the doctors thought there was still a possibility that because it had spread from my bowel to my knee that it would have spread anywhere else. So this is where we were involved hugely in the decision making. And

Where did you get information, did you look for other information during all this time? I mean apart from what the doctors were telling you.

Yeah but we were also told there isn’t a lot of information just because my, my case was so unique a) having bowel cancer at such a young age,

Yeah.

And b) the fact that it had spread from my bowel to my leg, in the back of my knee. It was just such a unique progression that there really wasn’t much data or information out there so intuitively we just had to try and make a decision. We decided just to go with the amputation, before we did that we just needed another scan. This scan showed though there was something in my pelvis, and the lymph nodes in my pelvis were cancerous so obviously that kind of rendered the amputation pointless.

Yeah so in, when I had the surgery in December 2011

This was when you had the lump removed from the back of your leg?

Yes, when they removed the lump from the back of my leg I was in hospital for about, I think it was only about four or five days, or that was the plan when I was leaving the hospital I just got a really, really bad headaches, just on the day we went to leave I was just Oh I don’t feel right, do not feel right. I was feeling quite sick someone said, Just put your head down, I just had a nap for an hour. And okay well well go now, I threw up around twice within fifteen minutes of getting in the car so obviously we phoned, phoned the ward and said, sorry he phoned the ward and said, Hes not right, do you want him to come back in? They were like, No, no, no, it’s fine. By the time we were anywhere near back home, I’d threw up much more times, I was in absolute agony, it’s probably the most pain I’d ever been in, just the headache I had was just crippling, I couldn’t concentrate, I couldn’t think we ended up going straight into the GP demanding to see a doctor. They just gave us a painkiller that we could take underneath kind of my gum, because I couldn’t consume anything. And just recommended kind of bed-rest and so I went home, just lied down still in quite a bit of kind of considerable pain. And then Mum got on the internet and started looking at what it could be and the only possible kind of thing was an epidural tear which is from the surgery I had an epidural, for the pain for my leg and they basically put it in wrong or it, it leaked or something, I can’t remember the exact explanation.

So you didn’t have a general anaesthetic, you had an epidural for that.

Well I had a general and the epidural.

Oh did you?

Yeah I had them both, them both.

And that was to prevent pain in your leg after the surgery?

Yeah.

I see.

Yeah, yeah. Mm. So, so then I had this and they recommended was just stay lied down for 48 hours and it should go. Well I was still getting pain when I was lying flat, it wasn’t as much, I was stable but I was just there, I couldn’t do anything.

Did you ring the hospital for advice?

Yeah, yeah, yeah, and they were like, yeah they were just saying stay 48 hours there. And we were just like, but you literally, hes still getting a bit of pain even though hes lying down, the rest of the day and it just didn’t get better. But it was the pain was that bad the distance I was walking from my bedroom to the toilet which was twenty metres I was feeling like throwing up cos the pain was kind of that bad. So as I say we looked into it and there is an operation that can be done to fix it if that makes sense, that had risks in itself but we just said We think he needs this operation cos hes in so much pain so we kind of put pressure on to have this operation, we went in over New Year’s and I think it was the 29th to have it and then, or was it? No we went in New Year’s Day, they had to open up a ward especially I had this operation, just with a local anaesthetic, and then absolutely fine.

Yeah basically when they put the needle in, they just, they filled this kind of gap up that they put the needle in so they just, so basically what I think it might be, they put the needle in and it doesn’t heal right or the hole was too big. So there was a leak of some stuff, so they just had to fill this hole.

Was that under general anaesthetic?

That was just under local.

Oh a local.

So that was a pretty uncomfortable experience but that was nothing compared to the pain I was experiencing as I said when I was upright. Cos as I say it was a really weird symptom that, whenever I was upright the headaches were insane.

Yeah anyway that was just a, another minor thing.