Living with and beyond cancer

I would say for a long time, six months or so, I didn’t want to anyway because I felt that, I was scared, I think, of bleeding or the pain or the discomfort, and I was douching every day because of scar tissues, and I was told at various treatments afterwards, or appointments afterwards, that it was raw tissue inside, so I didn’t feel very sexual, to be honest. I didn’t feel like I was a complete woman anymore because I didn’t have ovaries that worked, and I did go through a stage where I didn’t feel very attractive or very appealing as a woman even though no one in the street would have known, I knew, and that was quite tough yeah.

 

 

It didn’t actually, my husband was very supportive again. Again, I think he was quite scared of hurting me as well. And he never put any pressure, you know, we always cuddled, we were quite an affectionate couple anyway, so it didn’t really affect; it didn’t affect our relationship I'd say, definitely not, no. We always talked about it too, which I think is quite important. And when I did feel it was time, and I was ready, it was such a revelation after all those years of bleeding, that suddenly I was normal, and it was normal and this is how it should have been, but I never knew, and that was quite nice really.

 

 

Because in the beginning, before I was diagnosed, I did bleed during sexual activity, and when I went to the doctor originally he told me that was normal. It didn’t always happen but when it did happen I just presumed, because it wasn’t something I would talk about with my girlfriends, that it was normal. So suddenly when it wasn’t happening any more that’s when I realised it wasn’t normal at all.

 

 

Yes, mentally I think for a start because you’re very aware it could be painful, it could be sore, you could affect something, you could bring on another tumour, so all those feelings are going on in your head, but physically it wasn’t painful at all actually. It wasn’t, it wasn’t uncomfortable. I was told in the beginning that I might lose the top of my vagina from my treatment, but it didn’t feel any different for me. My husband said it didn’t feel any different for him. Again, it was the release of not having the blood, it was just so different for me because I’d had that for a few years and suddenly it wasn’t there, it was really good.

 

 

No, not really. You sometime, yes, I mean I think most cancer sufferers have this feeling of you’re infected and could you pass on, or anything else? I know very well I couldn’t but there is still that little part of you. There’s that tiny, tiny little grain there that at the beginning that you think that. But no, no it’s exactly the same as it always has been. There’s nothing to see, is there? There’s nothing to see anywhere with leukaemia, so there isn’t anything that’s going to be any different. Obviously, the only other way that it does affect your relationship is that you are so tired, that, you know, “Forget it. I’m going to bed.” And it doesn’t matter whether it’s eight o’clock in the evening or whether it’s ten, eleven o’clock in the evening. And I think after the length of time my husband and I have been married, he’s so used to me just if I’m too tired, to go to bed and I just go to bed and he cuddles into the back of me or I cuddle into the back of him and fast asleep we go. And so what if we don’t have sex that night? We really don’t worry about it.

 

No, I was concerned that my husband would bear it in mind but it hasn’t affected him at all. He’s quite happy. I had no sense of touch on that side. It’s, you know, it’s quite. I don’t know why I haven’t any, don’t get any, I’m not aroused if anybody would touch that side. I think, again, it’s because I’m self-conscious about that side, but no, not for very obvious reason because it doesn’t look, I don’t look deformed or anything. But no, it hasn’t impacted on my husband at all, and again, I don’t know if that’s normal, you know, that for a husband to feel differently, but he hasn’t. I think in some ways I suspect he’s just glad I’m still around. 

 

Oh I’ve not got none.

 

 

Yes. I was told that way back, 1996, and I mean I get Viagra now and that’s brilliant, you ought to try that. Well not you obviously because you’re female but, you know, I mean if you feel like taking the Viagra at the rate the doctors say you should take it, you know, you could give an 18-year-old a run for his money. But it’s a bit awkward. I mean I know 18-year-olds don’t mind walking about with big lumps in their trousers but when you get to my age it’s just a pain in the arse. So no I don’t think, it made my masculinity a bit more controllable.

 

That’s a good question. That is a good question. I don’t know how freely you want me to talk on that one. 

 

 

Up to then I would say we had a good relationship, me and my wife, you know, like normal. Yeah, since then things did go downhill, very… it don’t even… like my wife said she did it for me. She held back, if you want to call it holding back. I didn’t pressure her. I thought oh, we’re not gonna be bothering doing anything like that now, and it’s materialised that we don’t. I still… enjoy… how can I say… I’m not embarrassed. Why should I be embarrassed?

 

 

I blame it, I say it’s tablets. See what I say, it’s up there or not, I don’t… I can’t get an erection. Sex doesn’t bother me. I can’t get, and I’ve had this for now a lot of years. Without being funny, you’re watching erotic stuff on telly and there’s nothing, nothing whatsoever. I can’t get aroused, anything. I feel as though I’ve lost that part of my life, without a doubt of that. Whether that’s through this, through tablets or that I would really like to know. I know I did have a talk with my doctor once, I was gone a few years and he said, he mentioned Viagra but the wife said no just don’t even think about it. Past that now. You know? So… but yeah. I lost… six, eight years. Which… you just now, I just, it’s just I’m not interested. I can’t say I’m not… I’m not as… I always give my wife a kiss but that’s it. You know, we always before we go to work, before we go to bed, she goes before me, we’ve done that ever since and we always have done. That’s as far as it goes. That’s it, you know? Maybe she says I don’t say I love her like I used to. That goes with time sometimes. But it’s me that… I know I love her, I do love her. With all my heart. Yeah, I feel I missed… I don’t, I’m not angry about it now. It’s just part of me now, it’s just… doesn’t bother us. Not bothered, I don’t think. I don’t even think about it. Why think about it when it’s not going to happen.

 

 

Well it has, I mean obviously it has, I don’t particularly want to talk about it but it has in the sense that your own image, my own image of my body was horrendous for weeks and weeks and my husband was always very reassuring and would say to me, “You don’t have to wear your wig”, you know, when we went to bed. And you think, “Well it is a bit silly, isn’t it, wearing a wig in bed”, but, you know, you’re... I was so thin and scrawny and, that you don’t really feel attractive even if you felt you had the energy for a wildly exciting sex life, you don’t, you often have to make yourself remember that this is quite an important part of your life and that if you don’t preserve it isn’t going to come back when you feel alright.

 

I think that’s really the way it’s affected it, that often you maybe find yourself perhaps with less enthusiasm than you might have, but you know there is going to come a time when you are going to feel better, but as you get older you might think, “Gosh I let this go”, and so perhaps more self-consciousness about it. But mostly, largely because it’s very difficult, it’s been very difficult for me to think that I want to be seen outside of voluminous night-dresses or pyjamas, you know, terrible, pancake bottoms and things.

I think psychologically they don’t tell you the effect it can have on you.

 

 

The fact is that when you’ve got that stoma you feel as though you’re a bit unclean, it’s a bit unfair for your wife of husband, if ever it, whatever way it is, like sexually, to think, oh, you must look an awful thing with that bag hanging on you. I think that is for every person their own individual thing, you know. I mean it could be repulsive for the partner I should think. And my wife says it doesn’t make any difference to her; whether she’s just being kind to me I don’t really know, but I mean I’ve only got her opinion on that.

 

But I should think it must be a horrible thing. Nobody ever mentions that to you when you’re having the operation, or had the operation. I think it could be a big thing on a younger person. I mean, I was a bit, well getting more middle-aged I suppose when I had my operation. But for a younger person I should think it could be rather, oh I won’t get a boyfriend now, I won’t get a, nobody will want to see me anymore.

I don’t know whether you wanted me to say anything about my wife. There’s one thing I haven’t mentioned, of course, this particular treatment does effectively make you cease your sex life altogether. Now, whether if you’d expect to enjoy such things in your eighties is a moot point but if anybody prizes highly a continuing sex life then I can see this being a great disappointment.

 

 

I can’t remember whether it was mentioned or not. Logically, I realised it would do so because you’re told that it is to cease the production of semen, and if so then the effects of that are pretty obvious. I can imagine an eighty-year-old who’s just married a nubile twenty-five-year-old with great, very, disappointed.

 

 

No, no advice about it. I’ve grumbled occasionally but then that’s just a grumble.

 

 

And probably I’ve grumbled about it to my wife but not otherwise.

 

 

Frankly, at my age I couldn’t have expected it.

 

 

 

Yes. I think I’d just got probably, just disgusted with the workings of my body unfortunately. That didn’t happen at the beginning, but I think as time wore on, I think after I’d had the radiotherapy we didn’t have sex anymore. I think, you know, the nurses tried to sort of encourage me but my husband again was incredibly understanding about it.

 

 

Yes it was. I think he just fully understood.

The sexuality is strange. I can experience an orgasm but it’s different to what I did prior to the operation. It’s almost more, it’s more intense. It’s like some of the nerves have been sort of wired up slightly differently, or they’ve joined up, although they work but the sensation is almost like an electric shock. I mean it’s so intense. I mean it’s pleasurable but it’s so intense that one almost has to stop. It’s like one can masturbate but when you climax it’s so intense that it’s like, “Whoof.” You know, “I’ve got to stop.” You know. 

 

So going back to what you said how it physically it affects me, yeah, I can’t have sex as we all experience it but it’s just as good in a different way. I mean after the operation I went to see, I don’t know what the technical term is, but a sort of a nurse that would deal with sexual problems. And one of the things that they did say was with the consultant that’s not something that’s high on his list of what you’re like after the operation. It was, and I can understand that, because obviously it’s a big operation and technically it’s quite complicated and, you know, that’s his field of expertise. So I can’t expect him to be clever at everything, so I went to see this woman and, again, as I’m talking to you, it’s not sort of something prior to the operation that I would have spoken openly about but it’s since I had several meetings with her it’s quite good. 

 

And I mean she said that there are, you know, you can get Anne Summers and, what was the other one, I can’t think now. But lots of companies that produce, you know, sexual aids and toys and things like that, whatever you want to call them and I was obviously concerned for my wife’s point of view because obviously I’m not going to be able to satisfy her. And to cut a long story short I ended up, I bought a vibrator and it took a while to get used to it. I know my wife was quite angry after the operation because she felt that she was just as big a victim as I was, but no one was talking to her about it. You know, although we both went to see this woman about the sexual problems afterwards together, and I think that helped, but with this vibrator now I can give my wife a better orgasm than I could before. And I think because, the plus side is because I can’t, you know, I can’t satisfy myself in the same way as I could prior to the operation I have more patience and it gives me greater pleasure to see her enjoying a normal sex life or a better sex life than she had before. 

 

 

No, because I think we’ve got to a stage now where we know what to do, so I know what to do to give my wife pleasure and she knows what to do to give me pleasure. And my wife often turns round and says, “Pity we didn’t know this knowledge years ago because it would have been better then.” You know, but they were very good.