Has the stoma in any way changed your relationship to your husband?

No, he doesn’t bother about it, its probably me more than anybody, but it’s a bit more conscious that way you know, sexually it’s like, if I’m getting undressed sometimes and hes there I’ll probably put my hand over my bag or something like that. But it doesn’t bother him at all. That’s what I used to do, I don’t do it now you know its, its just something that, it probably took me longer to get to grips with that way than what it has him, it’s never ever bothered him at all.

Before you had the stoma, did you see a stoma nurse who explained things to you?

Yeah, yeah, she was very good.

Did she explain anything to you about having sex with a stoma?

Yeah, she did say about sex and that with the husband you know and she gave me some leaflets and that on it and you know, you can read them, but she was very, very good. You know but there was so much going on at that point, sex was the last thing on our minds, you know, because it was like stoma, radiotherapy, surgery, so for a good six months it just wasn’t, it wasn’t entered into the head, you know, too much was going on to deal with that.

I wasn’t only seeing one GP, because there was like two GPs in one practice. I was seeing maybe one, one time and the other one the next time I went. So there was obviously a lack of communication between them as to what tests I was getting because they kept giving me the same tests.

I must have said to them at some point you know “I’ve, I think I’ve had that test done before.” And I was trying to sort of say to them like, you know, “I’ve got terrible backache” and it was obviously constipation but because it was in the kidney area, they just automatically assumed that you had a kidney infection.

I mean I asked to see my GP notes and I flicked through them and I did notice that sometimes the odd occasion hadn’t been written down in, in the notes.

Your visit hadn’t been written down?

Yeah, which was wrong because everything should be written down and um, it just seemed to me that, why didn’t they pick up on someone that never ever goes to the doctor’s , which I didn’t, and then all of a sudden for the last six months they’re there, once a month, if not twice a month.

You know why can’t they pick up on something like that as well? To me its so obvious, like if you don’t see anybody for years or, on the odd occasion you see them, you know, and all of a sudden they’re going, then surely there must be something not right, you know.

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.

Oh God yeah, I remember it well. When I went in the, I didn’t know, really know what it entailed you know. I had to lay on my side, he then proceeded to put this tube up my rectum which was, bearing in mind I was bleeding and I was quite sore down there anyway you know. So he done that, I didn’t have any sort of injections to freeze the area or anything like that.

No pain relief?

No pain relief, nothing. And he put the tube inside, then he started to fill it up with air so it separated everything so he could see more clearly, apparently.

What, fill your gut up with air?

Yeah, my bowel yeah, around that area and then he proceeded to put the knife in and cut a bit off the tumour to take away to be looked at under the microscope. For me it was really painful, really, really painful and I wouldn’t like to have it done again – well I can’t have it done again because it’s all gone now.

How long did it take?

Oh about 15 minutes maybe, but it, it was total shock, total shock to the system and after that point just, embarrassment just doesn’t come into it you know. I never get embarrassed about anything now, it just doesn’t bother me.

Yeah, it was horrendous, I wouldn’t lie and say it was easy because it wasn’t, not for me. But whether that had something to do with because I was quite sore there anyway, I don’t know.

But I, I think it was a case of, looking back I used to, if I was at work, now you might find this strange, if I was at work and I needed to go to the toilet I tended not to. I tended to want to wait until I’d come home! And whether that had any, any sort of contributing facts to it I don’t know. You know if its lying in your guts rotting basically, because that’s what its doing isn’t it? And I’ve done that quite a lot you know so.

And then, you know, if you’re constipated and you go to the toilet and it’s quite difficult to do you obviously, I hurt myself, I remember doing it, I went to the toilet and I come down and I said to my husband “Oh God I’ve really hurt myself” because I was badly constipated at the time and I remember thinking oh that’s really sore, and for two days it was really sore.

And surprise, surprise that’s where my tumour was found, so, that is probably initially what started mine off, started the ball rolling, started the repairing going on and then it just not stopping. Because that was exactly the same place where the tumour was found. I suppose when I went to the toilet and hurt, ruptured myself and I knew I’d done it. I would say that’s what started mine, what’s caused mine, definitely. Definitely.

It is strange because, because you can’t plan ahead really too much it was almost like hed given up on me you know, it was quite strange. Until I had to sit him down and say to him “Look, I’m not dead yet, you know you’ve still got to live your life. You can’t not live it and sit there and think “oh shes gonna die, shes gonna die”, it doesn’t work like that.”

I said “I know we can’t plan for a holiday next year,” I said “but you know, some people don’t, some people just go off on spec, you know, you’ve just got to have, look at it that way.”

So yeah I had to sort of sit him down and it was almost like he had me dead and buried and sort of say to him you know “You can’t” because he was being, he was getting miserable, you know he was just getting depressed and I thought I’ve got to sit and explain to him, you can’t live like that, if he goes on like that it’ll just drive him mad.

Is it better now?

Yeah, yes. Yeah were doing things now weekends in London and I’m up to Edinburgh soon, so were starting to do a few things whereas before, he wouldn’t budge, he wouldn’t go anywhere, but now, it’s much better now.

It did keep the cancer and that at bay for a good 13 months or so. It wasn’t getting any bigger, it wasn’t getting any worse but then it started to not be as effective, as effective as what it was in the beginning obviously. So he then, my oncologist said “I’ve got another one here called oxaliplatin, well try you with that one.” I had that as well, and the side effects from that is again, it affects the nerve endings in your fingers and your hands and your toes, so my hands are actually, it’s like major pins and needles all the time and quite numb.

So in the May he um, he had to stop using it otherwise I’d lose total use of my hands.

But luckily for me the cancer’s behaved itself and it hasn’t got any worse. In fact it’s got a little bit smaller.

Has it?

Yeah.

That’s great. So are you having chemo now?

No, no I’m having a break. Hell leave me until he thinks theres something going on or he thinks the cancer’s starting to grow or my tumour marker levels are starting to go up you know, the CA levels that mark the progress of the cancer and that.

If they start to rise he will then um decide what hes gonna do. If I’ve still got the numbness in my hands he won’t be able to use the oxaliplatin, hell have to think of something else. Hopefully hes got something else! I’m hoping hes got something else. Whether he has or not is, is a different thing.

He did say that there was, he would be able to send me down to [town] to see if they could offer me a chemotherapy that he couldn’t give me at this hospital because of funding and from that point on I just thought, why should I go down to [town] when I live up here?

So I had a big fight on my hands, I had to fight for treatment, because he said it wasn’t cost effective and they didn’t know the benefits of this treatment.

And for two months I was fighting and in the end I won. They did say they would pay for the treatment and…

Pay for it to be given to you at your local hospital?

…to be given to me at my local hospital, yeah. Which I think everyones entitled to at the end of the day.

I mean a lot of people think just because they pay their National Insurance year in, year out, they’re quite entitled to everything on their National Health Service and they’re not, they don’t realise it I don’t think, you know.

So, I just thought you know, “why can’t I have it at my local hospital?” so you know, I had a fight on my hands and luckily I did, because at the time he said without treatment I only had three months to live, and that was in July of 99 and I’m still here now, obviously, talking to you lot.

When you think about the future now, what do you think about?

Oh, Christmas! To the extent where I’ve got some Christmas presents already!

Just tell people, this is August?

Yeah, this is August and I’ve got quite a few Christmas presents, so call me mad or just call me

Well prepared!

Well prepared, yeah. What do I think about the future now? I don’t think in years.

I probably, like were sitting here now in August and I know I’m gonna be here at Christmas. This is what, now last year I wouldn’t have said that, this year I am, but I’m saying it and I’m also thinking oh, don’t push your luck [name], don’t say things like that you know. So, I just think in, a couple of months ahead or, nothing great you know, because you don’t want to, if I’ve been unlucky all the way through this I don’t want to push it any more!

If I’m here in two years It’ll be a medical miracle, you know if I reach forty. But I just don’t think they realise you know.

Sometimes it hits me, and it’s like Ah, it takes your breath away you know. Last, every Christmas I say “I might not be here next Christmas.” But every Christmas I’m still here, come back like a bad penny! So yeah every year I say that, “I might not be here at Christmas!”

Well I hope you’ll be saying it for many many more years.

So do I, I could be in the medical books, you never know. Mind over matter I say, I truly believe that, I truly believe it.

I know they know what’s going on but because I look so well its difficult for them to even think about me dying because I look so well, are you with me?

Yes.

You know. Probably if I ever get to the stage where I’m like can’t get out my bed and I’m so ill and, they’ll probably accept it and hopefully they’ll accept it.

You know, its not as if we don’t talk about it, I talk about it often, you know. Just odd little things come out and I say to them “Do you know that when people die they go up to heaven and become stars” and stuff like that to the little one. She goes “yeah”. I say, “well I’ll be the brightest star up there”. I say, “so when you do your running I’ll be blowing behind you so you run that little bit quicker.”

And and say things like that so, you know, and things like you know “You can talk to me if mummy dies. I won’t be able to answer you back but you know I’ll be there, don’t you?” She goes “yeah”.

So you know I’ve got things like that sorted out and I say to her “You know the funerals going to be really sad if and when,” that’s what I say now “if and when I die.”

You know, so that’s pretty much sorted out and I’ve left them sort of a, I’ve done them boxes and that with photos and little bits in and letters and stuff, that they are to have if anything happens to me, little memory things. So I’ve done all that.