Oh God it was dreadful. The stoma nurses I have to say were excellent, but I found it very difficult in the sense that she would come to me and she would take me to the bathroom in the mornings and during the course of the day to deal with this. And I said “I can’t look at it.”

And she said “Well, you will do.” And a few days on she said “I want you to, to,” well, shed actually got me to look at it.

And then another couple of days afterwards she said to me “I want you to change it today.” I said “Oh I can’t do that.” She said “Yes you can.” Yes you can.

And I did do it. I suppose, and in, in time once I’d actually got home and, in my own environment and had to deal with it, you just do. It wasn’t pleasant, I didn’t like it, I hated it.

I have to say that every step I took I didn’t really get the information that was required.

I, it is very difficult, I just feel that surgeons obviously do an excellent job but, they have never been through the procedure, so it is very difficult to explain to a patient what is to be expected.

Having gone through all this, I feel that it is now so important that patients having to go through journeys like this, hopefully there aren’t many people that would have to go through what I’ve gone through. But even a straightforward bowel resection it needs, there, theres a lot of need out there to explain to these patients.

I think they need to be aware of in more detail of what the surgeon is actually going to do. I think they need to know the level of pain that they’re expecting to experience when they come out of this and the sort of things that, that may happen or dietary problems, I think dietary problems are one of the biggest, especially with bowel surgery.

The first operation, obviously I was very, very frightened. I’d never ever had an operation before, never. I didn’t know what to expect. The nursing staff the night before I, I was sitting in, on the bed and I was absolutely petrified and the nurse came to me and she said to me “What’s the matter?”

And I said “I’m petrified.” She said “Well you know, everythings going to be fine, you’re in good hands,” etc., etc. Yes, that’s fine. I was in good hands. I knew that, but that wasn’t telling me what to experience, what to expect.

I think, I was very frightened with the, with the liver op. I was also very frightened with the first lung operation because I didn’t realise when the surgeon actually said to me, I didn’t think about it, I didn’t realise that they would actually have to cut through the sternum. That frightened me and I thought well my body is going to be cut in half! And I was very frightened.

And of course another thing that I was concerned about, was it going to affect my relationship? And she said that “Oh don’t worry about it, we can get you a nice little sexy little, bag to put over the top, you can buy black lacy ones you know!”

Is that true?

Yes, apparently! A black lacy cover, but…

For the stoma bag?

‘Tis for the stoma bag yes. But I didn’t actually venture into that! I was very fortunate, my partner was wonderful, and just accepted it, but uh.

Do you think it was harder for you to cope with the physical side of your relationship with the stoma, than for your partner?

Yes, I think so. I think so.

How did you get over that?

I think be, I think because of him really. Because I realised it wasn’t a problem to him, so if it wasn’t a problem to him, then it shouldn’t be a problem to me.

Hes been very positive, very encouraging, hasn’t given me any sympathy. He feels that that is the most important thing. Sympathy, you can’t have sympathy with something like this, it’s a war, it’s a battle and you have to fight it.

So how has he supported you?

Literally by being there for me every step of the way, encouraging me every step of the way, that every operation was going to be successful and everything was going to be fine. And as I say he just explained every step of the way, “Every one is a battle. You’ve fought this one, OK weve got another blip’ it’s another battle. Whatever, it’s , it’s another, it’s another battle that you’ve won.” And that was the way we got through it.

Did you ever get to a point, I don’t know, half way through or something, where you thought, I cannot face another operation?

No.

You always?

I just knew all the time that whatever they said I had to do, I had to do. I just fought and fought and fought. Otherwise I would not be here today. I’m convinced of that.

But it must have been exhausting keeping your spirits up.

It was exhausting.

the experience of it.

Oh yes.

How did you do it?

Well um, again I have to say, my partner. Weve had wonderful holidays. I went on, on a cruise, Caribbean cruise. I’ve been to Hawaii, and all these things have kept me going.

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.”

I think because the bowel had been out of action for nine months didn’t help um, so consequently everything I ate I was awake night and day, night and day because everything I ate just went straight through me.

So you had constant diarrhoea?

Constant diarrhoea for, constant diarrhoea for at least a week, and it was absolutely dreadful. I just cannot explain, I was in tears night and day, and I just wished they’d never reversed it.

One nurse told me, “Well just eat what you want.” Another one told me “Well I’m sure that if that, because you’ve had the bowel problem, you should be on a high fibre diet.” The dietician didn’t even know. And I thought where am I going? It was quite frightening.

The only way that I resolved that was having spoken eventually to, to this stoma nurse, or the stoma sister and she said “Just take things steadily, don’t eat too much fruit, don’t eat anything that’s too high fibre because everything, obviously too high fibre is just gonna go straight through you. You’re just going to have to be very careful. Start to eat certain things. If they don’t work leave them alone for a little while and then reintroduce them.”

And that was the only way that I got this to, and also the muscle obviously had to learn, all the muscles had to learn that, you know, there had to be some control there and because of not having a rectum it had to be the muscles. I had to get the muscles to work, to tighten up, to keep the control.