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Lymphoma

Roles, relationships and sexuality

Cancer or its treatment can change people's roles in the household. During and after treatment many people don't have the energy to do all that they used to do around the home, and family members, neighbours and friends often help with household tasks (see 'Support from family and friends'). 

Several men said they no longer had the strength to perform some of the traditional male roles and this affected how they felt about their masculinity. A married man diagnosed at age 44 who had three children worried about not being able to provide for his family; he confided to a Macmillan nurse. A man in his 60s with emphysema and back pain as well as having had lymphoma felt that his wife shouldn't have had to take over the heavy gardening tasks that he used to do. He also said he felt more vulnerable and less able to defend himself on the street if it were necessary.

 

After spinal surgery he is less 'strong and tough' than he used to be; he can't do things that...

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After spinal surgery he is less 'strong and tough' than he used to be; he can't do things that...

Age at interview: 53
Sex: Male
Age at diagnosis: 51
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Has having this illness affected the way you feel about yourself as a man at all? 

No not, well not really, not directly. I mean I've already mentioned earlier haven't I? I mean obviously there's things I can't do that I used to do but I'm still optimistic and keep an open mind about everything. So yeah, I mean there's times when it's difficult. I could give you an example where, because I had a puncture the other day, which fortunately it was a puncture outside my front door, I mean sorry on my drive, and so it's all about, 'So how am I going to deal with this?' My friends I know would have changed it and would have done it, but they'd done so much for me so I have to think about what I'm going to do. 

So I'm in the AA and I phoned them up and they came and changed my wheel. And it brings it home to you then you see that I said, 'I'm sorry I'm having to ask you to do this,' because I couldn't, I didn't want to lift the wheel out, well I wouldn't have, I didn't lift the wheel out of the', the spare out the boot. So yeah I mean it brings you home that you're not what you were. So he changed it, it was brilliant, it was done in twenty minutes. Then I needed to go and get it repaired or get a new tyre so I went, I'd been to the tyre centre, I mean this is a great achievement for me because again twelve months ago I wouldn't have done this, obviously, I was uncomfortable but I did it, and I go down to the tyre centre and I'm having to ask the lad there to get it out. Well he doesn't mind but yeah it reminds me that I'm not what I was. 

But, and in fact you've raised, it's a really important issue this, because right from day one in hospital I could not get used to asking people to do things for me. And the nurses all say, 'Well that's what we're here for', but I was so independent before. And again I don't know the answer how but I'm dealing with it, I mean I just have to accept it. I don't like it but again I hope I'm not getting depressed, I mean I'm not depressed but you've just got to get on with it anyway. But again I've reminded myself, haven't I? A year ago I couldn't do that, maybe another year's time I might be lifting the wheel out, I don't know, but I'm cautious obviously at the moment. But yeah I think there may be things to come in the future, I don't know, I haven't experienced even yet, as you say how does it make you feel as a man? I mean obviously I'm not as strong and tough as I was. Was I strong and tough? But, you know, I'm not what I was, but I am here and that's important. So I've just got to adjust to that.
 

Many women felt that changes in their body image through the illness and its treatment had affected their femininity (see 'Hair loss and body image'). One young woman said she felt less attractive after learning her diagnosis but a friend reassured her that nothing about her had changed except the knowledge that she had lymphoma. Wearing a wig and make-up helped a 42-year-old woman who lost her hair to feel more feminine. Some women suspected that their femininity would have been more impaired by breast or cervical cancer than by lymphoma. A woman who had had breast cancer before her lymphoma confirmed this and said that the hair loss and central line in her chest associated with her lymphoma treatment were not a problem for her or her husband.

 

Felt defeminised by treatment: she lost weight, all her hair, her periods stopped and she had a...

Felt defeminised by treatment: she lost weight, all her hair, her periods stopped and she had a...

Age at interview: 27
Sex: Female
Age at diagnosis: 25
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How do you feel about your body image?

Now, OK. When I was having treatment I felt quite de-feminised' you've lost all your hair everywhere, you've got a tube coming out of your chest, my periods had stopped. So really almost every feminine bit about you had been altered with, and that felt a bit unnatural, and I'd lost quite a lot of weight at the start with my treatments. But now absolutely fine. I feel healthy, I feel normal yeah, no problems now.

Did your periods get back to normal?

Yeah within about four weeks of stopping treatment. I was quite surprised about how quickly that had got back to normal.

How did your partner help you cope with those feelings of being de-feminised?

He understood completely what I was talking about. And we had a strong enough relationship that I knew that it wasn't going to affect the way he felt about me in the long run. And we both knew as well that these feelings wouldn't last forever and the things that I felt were wrong at that time would right themselves again. You just had to keep thinking how those were short-term things. Give it a few more months and you'll be back to normal. And, you know, that is what happens.

 

Can't imagine forming a close relationship after going through such a major crisis alone; feels...

Can't imagine forming a close relationship after going through such a major crisis alone; feels...

Age at interview: 48
Sex: Female
Age at diagnosis: 45
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Has it affected the way you feel about your femininity at all?

Yes.

In what way?

What femininity? I mean in a glib kind of way. Yes very much. I think what happened is because my body became a site of treatment, so obviously, and I was on my own when I was diagnosed, I mean it's just one of these coincidences that happens in life, I was not in a relationship when I was diagnosed. So I think one of the things that's happened is that I've been through this kind of major experience on my own so I find it very difficult to conceive of forming a close relationship with somebody now. It's something I need to think about really, I'll get a bit lonely at some point. 

And my sex drive hasn't come back at all. And I think because in treatment your, the body image, I mean I was like a borg, I had a tube hanging out of me and I didn't find my body attractive and I had no sex drive. And now I still think of my body in terms of illness not in terms of a physical relationship and closeness with somebody else. It's kind of, because I go to the gym, I do yoga, I do all these things, but it's all to do with avoiding disease. And I think that is a fairly basic thing that I haven't, this is the first time I'm thinking about it actually. I don't think I've asked myself this question recently. But I don't think of my body as a site of sexual pleasure at all. There you go.

Having cancer or undergoing treatment can put a strain on relationships. This can be due to the strain of facing the illness and debilitating treatments, but also to loss of self-esteem and unhappiness about body image (See 'Hair loss and body image'). One young woman had been worried that her illness would affect her relationship with her partner but, if anything, it had strengthened as a result of it. Another said she and her husband had probably had more rows but in part this was because she was now more likely to stand up to him. Another woman thought she had probably become a bit more aggressive. A man who had been aged 29 at diagnosis said his personality changed during treatment, ultimately leading to his first marriage breaking up. Some young people we spoke to started a new relationship during or after their treatment and found that frank discussion of the illness and its physical and emotional effects with their partner helped them to accept it and made their relationship strong.

 

Personality changes damaged his marriage but he couldn't see it at the time; he was too proud to...

Personality changes damaged his marriage but he couldn't see it at the time; he was too proud to...

Age at interview: 46
Sex: Male
Age at diagnosis: 29
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Through the second period of cancer my personality changed, I think that's quite an interesting one. I turned from a sort of happy, outgoing kind of person to a sort of introspective, unhappy, certainly very angry, and this is only in retrospect now, I mean at the time I didn't know it but I was really angry at this intrusion into my life, I think. And this had a detrimental effect on my marriage and all the people around me and I found, you know, I was impossible to talk to, I wouldn't listen to people saying that, 'Oh you're changing', or, 'You're not the person you used to be', or, 'You need to go and seek some help about your anger', or, 'This is affecting your relationships with your wife or children or your friends', or, 'I don't like the kind of person you're turning into'. And certainly it was, you know, I wasn't available to listen to this kind of stuff, even from professionals. 

And people around me who, me having cancer affected them as much as it affected me, well of course at the time I never really, I couldn't see it, you can only see the problem you're going through. And this definitely affected all the people who were around me and who wanted me to get better and who cared for me. And I could've handled that much better if there'd been somewhere, someone there who I'd have been able to talk to. I couldn't really talk to my consultant because he was dealing with another twenty people at the time and I considered myself to be a strong enough person. I think of myself as a coper, you know, I can cope with anything, but looking back obviously I coped quite badly with what I went through. 

And through, once the second set of treatments had finished the anger that I felt through that process, that carried on for a number of years and I think my personality changed and it was definitely a detrimental effect on my relationship with my wife and my son. I'm not particularly pleased about the way I was during that my period, especially as my son was so young.

Were you ever offered any kind of counselling or anything to deal with your feelings?

Yes I was offered, well I was told where counselling was available. My wife independently went off to see the consultant and a cancer charity to talk about the problems that we were having through the process and after the process. I mean the fact that once the treatment finished and I was OK and then it never came back again for years afterwards, I mean I was never the same person, and I think I only got back to being the person I was before personality-wise maybe five or six or seven years after the event, by which time it was too late for, things had been said and done which couldn't be unsaid and undone. 

And if I'd been offered counselling or if I'd gone for it, I think I was a little bit too proud to go for counselling as well, which was a mistake obviously. But if it had been more readily available or more strongly advised to me and I'd gone for it then maybe some of the things that were said and done wouldn't have been said and done and maybe things would have turned out better after the event.

So it ended in the break-up of your marriage in the end didn't it?

Yes it ended up in the break-up of my marriage, and I have to say that my, I mean my ex-wife through the whole process, she was fantastic, it wasn't her fault. But cancer affects everybody, it just doesn't affect the person who's ill. But it, you know, I behaved very badly in hindsight and what was, the things that were said and done, I can't undo them. And there it is. But it could have turned out different.

 

Wearing a wig in her teens made her withdrawn and she had no relationship until she was 18; her...

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Wearing a wig in her teens made her withdrawn and she had no relationship until she was 18; her...

Age at interview: 41
Sex: Female
Age at diagnosis: 11
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And when you're, as I say, you're at teens, 16 / 17 / 18 wearing a wig, that was very hard because obviously my pals were all very into make-up and going out and having boyfriends, and I was totally withdrawn and didn't want any relationship. I ran away from the opposite sex because I was so self-conscious. So I think it took me probably until I left college at 18 before I actually managed to come to terms with that. I did have quite a hard time between the age of 15 and 18 due to this and didn't lead a normal sort of teenage life at that time. Then I went on and I think probably doing my nursing at 18, that helped me to come to terms with it. And also my hair had started to grow through now, the transplant. So I could, I lost the wig. I didn't have to wear the wig anymore and therefore my confidence grew. 

So I didn't really have a boyfriend for the first time until I was 18 coming up 19. It's the first time I had a relationship with a man because I just had such a complex about myself, so that was quite hard for me.

How did that boyfriend react to it all?

Oh he was wonderful, yeah, from that point. My first love, I mean he was just great. He was a very good friend as well and I think he probably helped me over it, to overcome it. He was a really kind and understanding chap and he really helped me to come to terms with it as well. So that was, yeah he was a good friend as well as a boyfriend. So that was, yeah, very, very, great relationship to have had at that time actually. Helped me to take big steps forward, yeah.

 

Met his girlfriend during his chemotherapy when he had lost all his hair; he discussed his...

Met his girlfriend during his chemotherapy when he had lost all his hair; he discussed his...

Age at interview: 25
Sex: Male
Age at diagnosis: 22
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At the time I was single when I first got diagnosed, but I actually met my current girlfriend during my chemotherapy and I found again, that was a bit of a stumbling block for me. A bit of an issue, yet I felt different from everybody, I didn't want to, you know. There was, I mean there was literally just no hair on my body full stop and it kind of felt very strange to be entering in a relationship, and entering a sexual relationship as well, with such a different body to the norm basically. I wouldn't say deformed because it wasn't, it's not a deformity it's just something different, and I didn't ever approach it like that, I just kind of felt I had to take things a little bit slower, and I was quite honest about that sort of thing because I was lucky with the particular person that I was with that I could raise those kind of issues. And it took a bit of time and a few kind of heart-to-heart talks about those sort of issues but it was great because she didn't expect anything of me and we went for it very slowly, and it, at the end of the day it didn't matter to her so we kind of got over it. 

And I think once you've been through something like that it can only pave the way for a stronger relationship 12 months, two years down the line. So from then I knew, it kind of gives you an automatic reference as into a serious relationship as to how that person's feeling about you, the levels that they will accept from you. You know, if they can take that they can take quite a lot basically, and that's what I was quite impressed with. People around me sort of accepting those differences that I did have, but not really, but still treating me as how I wanted to be treated as in a normal person. 

So those sort of more obvious differences like the hair loss, they were kind of like a big issue for me at the time because there was nothing I could do about them. Psychological differences I could just kind of glaze over and not admit to, but physical differences there was literally nothing I could do about it, so it was a big, it was difficult to get over at first and because it was such a new relationship and perhaps if it had been with a girlfriend that I'd had for a longer period of time who I knew better it would have been a different sort of, it would have been an easier process because you already know them so well. But because I'd literally just met this person and she only knew me how I was with no hair and with, you know, as an ill, basically an ill person who wasn't doing very much during the days, it paved for a very strong relationship I guess and it meant I could trust that person a lot, lot more than I could other people, I guess, because she'd understood to such a degree that, you know, I'd had to show her something that was a weakness, well, that was a difference for me, to other people. Whereas most I could just kind of hide and get away with basically, so that kind of created a very strong bond between us I think and it really helped in creating a good relationship I think.

So you had that sort of open, proper communication, honest communication?

Yeah, I mean with that sort of thing I think you immediately have to jump into the deep end. There was no kind of getting away from it. It was either kind of, you ignore the issue for however long I was going to be ill for until it grew back, or you kind of confront it straight away and get over it basically. I think the way we did it was the better way, I didn't want to miss out on what should have been a normal relationship in any other circumstances, I didn't want to be treated differently, so for me not to be treated differently we had to kind of approach it head on and just get over the issue that I had no hair or whatever, or the fact that, you know, also, fertility in later years. We had to deal with a lot of serious issues on day one of a relationship which, you know, we didn’t know where it was going to go basically.

Some drugs used to treat cancer, and the tiredness that treatment often causes, can reduce interest in sex during and after cancer treatment. A man in his sixties said his sex drive had plummeted because of his steroids. Some people said they had been warned about this and accepted it as inevitable while they were feeling ill - several said their sex drive soon returned to normal after treatment. It could be difficult to know how far these changes were due to the illness and how much to natural ageing. A man with other health problems as well as lymphoma said sex was difficult so he and his wife looked to the companionable side of their relationship. 

 

Was warned that treatment might cause impotence but as he doesn't usually feel like sex when he's...

Was warned that treatment might cause impotence but as he doesn't usually feel like sex when he's...

Age at interview: 58
Sex: Male
Age at diagnosis: 51
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Has having this illness affected the way you feel about your masculinity at all?

No not at all, not at all, I feel fine. It was explained to me that some of the drugs could cause impotence, could make me go off sex, go off, you know, I mean I said, 'Well presumably I'm not going to be feeling very well am I? That's normal isn't it? You know, who feels like sex when they've got flu?' So I just relate it to things like that. So no I feel comfortable with myself.

Most premenopausal women find that their periods stop or become irregular during treatment and they may get menopausal symptoms such as hot flushes and vaginal dryness. Health professionals don't always discuss sexual issues and patients may find it difficult to raise them. Specialist nurses can provide support for people experiencing sexual difficulties and suggest solutions to problems, such as vaginal lubricants, which can be bought without prescription. Men who experience prolonged impotence may be offered medication, such as sildenafil (Viagra), to overcome this.

 

Chemotherapy caused vaginal dryness so she didn't enjoy sex; she couldn't discuss it with her...

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Chemotherapy caused vaginal dryness so she didn't enjoy sex; she couldn't discuss it with her...

Sex: Female
Age at diagnosis: 44
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I mean I'm forty-four so I'm still sexually, well not that you change even now, but I was still sexually active with my husband. And it's difficult actually because when you're going through the chemotherapy you feel they're suffering quite a lot and you're desperate to get back to some kind of normality. And one of the things it did, and of course the literature tells you that you lose your natural lubrication. So you tend to be that, that was awful actually because I was desperate to pretend I was normal, even when I wasn't a hundred percent, you wanted your partner to feel you were normal. But sex was a nightmare actually and so instead of enjoying the natural, you know, it was really difficult and I'd never heard of KY jelly. And I was of the old school where you didn't talk about sex, you didn't discuss it even with your best friend actually, and so you suffered this sort of thing. And I wasn't back to normal because this was really difficult at the time, which meant that obviously it's difficult for the partner as well. 

And then all of a sudden I think I must have been so desperate and I must've been, and I'm sure I was in the company of a nurse friend, and I think I hinted at something in my desperation and she just came out and said, 'KY jelly.' And that was incredible and changed my life. I mean it was one of these simple changed my day-to-day normal living situation. 

Did you discuss the difficulties with your husband at the time or could you not even do that?

I was trying. Again I felt he'd suffered long enough, and I was just desperate to pretend to him that I was normal and so as not that we, I mean we have a great relationship and we do share everything, but for some reason I tried to hide that. And I didn't ask anybody if it was going to continue forever or, I really didn't know if this was me for the rest of my life actually. And that's scary.

Last reviewed February 2016.


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