Interview 15

Age at interview: 65

Age at diagnosis: 59

Brief Outline:

Diagnosed with colorectal cancer 1995. Under went surgery, permanent colostomy and radiotherapy.

After many years she still worries about her stoma.

And how did you feel about having a stoma?

Oh terrible, I still do.

Do you?

Mm I know it might sound silly to someone else but I never feel clean. You know I mean, well I have a bath every morning but I dunno I just don't ever feel, like while there's nothing in it I'm alright but as soon as it works I just feel as though I'm dirty.

Like it's a horrible feeling really I just like and as I say if I'm in company, and it's not so bad now because obviously I basically know what to eat and what not to eat, but at first I didn't and oh the noises it used to make, it used to be horrendous and I used to feel so embarrassed.

Like my niece got married in May and I dreaded it, as much as I was looking forward to it, she's my goddaughter, I was dreading it because I thought I bet this will go wrong, I bet that'll go wrong, I've always got that fear.

Her family's support dropped off over the course of her illness.

From the off yeah I couldn't have faulted them. But then after as I say the first year when things still wasn't getting any better, I mean alright they had the two young children theirself and I mean obviously my son's got his own business so I mean he had enough to cope with. I mean not that I bothered them that much.

I mean I never used to whinge and well not that I thought, like I mean I was never constantly on the phone to them or anything. I mean there's times when I can honestly say that I've laid in there for two, three days like really, I mean luckily I've got a sister over the road and two nieces that live down here. I mean they like rather than bother like my son. That's the reason I moved here actually.

It sounds like you had to deal with quite a lot of it on your own?

Yes but I'm the type of person though that I would rather deal with it on my own like than, because I think I'm bothering other people you know I would rather deal with it on my own.

Describes a distressing experience when her stoma prolapsed severely.

On Saturday night I felt so ill and I thought oh I'd just go up to bed. Well as I got up and went out the kitchen to get a glass of water to me it just felt like something had exploded and obviously I was covered in mess.

It had just come right out and I mean I was absolutely petrified because I didn't know what had happened but I cleared it up to the best of my ability and I just went up to bed and luckily for me my sister was coming on the afternoon but she came in the morning because she said she had a feeling that things wasn't right.

And I was just laying there and she was saying to me "I can't leave you here like this, we'll have to do something, blah, blah, blah."

Anyhow I went "No leave it I'll be alright," you know because I was just that far gone I couldn't even be bothered to be honest.

Explains how her constant fear of accidents with her stoma bag have affected her social life.

I used to go out quite a lot more socially than what I do now. I mean I hardly, unless it's with the group I mean I don't go out socially at all.

Is that because you don't feel well enough?

No I think it's more to do with the stoma.

Right.

Because like I mean obviously I've had a lot of accidents with it and even now I still do.

I'm always frightened that the bag is going to come off and, because it has happened and er that do prevent me, like when I know it's a social evening like eating, a few drinks, I mean obviously I don't drink that much now but I can't do it because I've got the fear of the bag coming off.

So I think that basically is what's stopped me from going out socially. Like my niece got married in May and I dreaded it, as much as I was looking forward to it, she's my Goddaughter, I was dreading it because I thought I bet this will go wrong, I bet that'll go wrong, I've always got that fear.

She did not understand that a polyp could be cancerous and was shocked by her diagnosis.

So I came out of there with not a concern in the world, like thinking oh it's only a polybus [polyp] like you know it's nothing. Then that was on the Tuesday.

On the Saturday morning I got a letter from my GP saying "Please come up here at your earliest convenience because like I need to see you but don't get alarmed about this letter," which I didn't because I'm still assuming it's a polybus [polyp].

And I goes up there on the Monday morning, on my own because I didn't think there was anything wrong and I see like the GP and he said to me I've had a letter back from the consultant and the surgeon [at hospital] and I'm afraid like you know it's more serious than what we thought.

So I looked at him, I went "No, no it's alright like I've got a polybus [polyp]." So (laughs) I mean I'm laughing now, I wasn't then, he said "No I think we're talking on crossed lines." He said "you've got a Dukes C carcinoma of the bowel." And I just looked at him and you know obviously I didn't take it in and I just came out of there and I just walked round, like trying to sort it out in my mind.

Describes the support group she attends in East London.

And what's it like at the support group, what, what do you do there?

Well er we don't talk, like when you have the one to one counselling obviously you talk about it but then once you actually go into the group, I mean it's something you don't really want to talk about and I don't know we just do all silly things, have a laugh and talk about general things. We have days outings and do a bit of fundraising and things like that.

And has that helped?

Yeah, yeah it has helped a lot.

What's it given you going to CYANA?

Er well it's something to, it's only once a week, Wednesday, but obviously I've made some nice friends over there. And like they've not all got cancer, I mean I would say there's more without cancer over there that's lost like partners and wives and husbands like their carers as they're classed as. I'd say there's more carers than what there is actual patients but it's just er well a nice feeling to go there like.

Does it give you a sort of, excuse me, a sense of community?

Yeah I think like you feel as though obviously you're not alone. I suppose that's why they named it CYANA, Cancer - You Are Not Alone

What's the next outing with the group then?

I think it's in August.

What's it going to be?

I think it's just a boat trip only like

On the River Thames?

Yeah to Waltham Abbey, I think it leaves from Bow up to Waltham Abbey.

Are you going to go on that?

Hopefully yeah. We went to see er, what was it, 'The King and I'.  Was it last month or the month before, I think it might've been May we went to see that, that was a nice afternoon out. But you see where they've been so busy over there and that, they can't always get a trip once a month.

Right.

I mean I've already booked to go, it's not till November but it's what they, I don't know if you've heard of Turkey and Tinsel?

Oh yes.

Well we're going on one of them like with a few of them from over there, Monday to Friday. I mean I do try to go on all what they get up because as I say I don't feel out of place with any of them but well I mean I don't really with my family but I dunno, I still get wary.

Describes what happened when her stoma disappeared back into her abdomen.

We went to Manchester with the group, the conference up there and I think it was my own fault. I lifted my suitcase and I felt the right sharp pain but obviously I just thought oh you know it would go. This was on the train station.

Well then we got to the place like where we stayed, well the next morning when I got up like obviously I was seeing to myself and I took the bag off and I was amazed because all that was there was a hole, because there's doctors and all that there and they said I had to go to hospital and they done x-rays and what have you and they was going to keep me in.

And I went "No I can't stay in like, I'm only up here for the weekend," and he was a nice doctor and he just said "I'll be the judge of that when I've seen your x-rays."

But he did say to [a friend] that he would let me home, he said "But as soon as she gets home tomorrow she must go straight to the hospital," which I did.