One hundred twenty-two participants (43 men, 79 women), or 78% of this subsample, reported that the onset of cancer had negatively impacted upon their sexuality and their sexual relationship. When we examined the type of cancers associated with changes to sexuality after cancer, the rate was 90% for partners of men with prostate cancer, 71% for partners of women with gynecologic cancer, and 78% for partners of women with breast cancer. Overall, the percentage of partner carers of partners with "nonreproductive" cancers who reported an impact on the sexual relationship was 76%, and the percentage of those caring for partners with cancers involving reproductive sites was 84%.
Each of the 122 participants elaborated on the changes to his or her sexual relationship experienced after cancer in open-ended responses. These responses concerned the status of the sexual relationship, perceived reasons for the changes, and partners' feelings about the changed relationship. Each theme is reported below, illustrated by extracts from the open-ended questionnaire items and the interviews. Demographic information is provided for longer quotes stemming from the interviews. For readability, these specific details are not provided for every open-ended questionnaire quote. Percentages cited refer to the open-ended questionnaire responses.
Status of Current Sexual Relationship
Two major themes characterized accounts of the current status of the sexual relationship: cessation or decreased frequency of sex or intimacy and renegotiation of sex or intimacy.
Cessation or Decreased Frequency of Sex and Intimacy. A complete cessation of sex or a marked decrease in the frequency of sex was reported by 59% of the women and 79% of the men. For those who experienced a complete cessation of sex, the "end" of the sexual relationship was reported as a sudden event: "[o]ur sex life disappeared overnight" and "[g]one from fantastic sex life to none." For other participants, it was a gradual change: "[i]nitially we found other ways to be intimate, however, over time our sex life has ceased." The impact of both the cessation of sex and the loss of intimacy was evident in the following interview extract:
A big... big chunk of your life is lost, and I don't just mean the physical aspects of it... I mean that's... you can live with that or you can... or go without, but... the whole package is gone and I think that's hard that, you're a widow with somebody that's still around. [57-year-old woman caring for 53-year-old husband with brain cancer]
Of the participants who reported decreased sexual frequency rather than a complete cessation, many positioned their sexual relationship in ways that indicated that they had previously enjoyed an active sex life: "[w]e had a very strong physical relationship up until the cancer was discovered and after it, it just faded away" and "[v]ery poor, we use to have sex 5 times a week, now maybe once in 3 or 4 months." Others simply described a change in frequency: "[v]irtually non-existent" and "[t]his aspect of our marriage has nearly stopped." Many of the participants who reported cessation or decreased frequency of sex also reported decreased closeness and intimacy. Responses included the following: "I couldn't cuddle like we used to" and "[o]ften feel frustrated that it doesn't happen like it used to-he is not as romantic either."
Renegotiation of Sexual and Nonsexual Intimacy After Cancer. A renegotiation of their sexual relationship to include noncoital sexual practices or the development of nonsexual intimacy was reported by 19% of the women and 14% of the men. Men (12%) were more likely than women (1%) to report having developed alternative sexual behaviors to those practiced before the patient had cancer. These behaviors consisted of changed sexual positions when attempting intercourse: "I am obviously more careful, having adjusted positions," and the development of "workable alternatives to achieve partner satisfaction... within restrictions caused by the treatments," including oral sex, massage, masturbation, or the use of a vibrator.
Women (18%) were more likely than men (5%) to report that renegotiation involved nonsexual intimacy such as hugging and cuddling: "I'd put my legs up on his lap, and he'd put his arms around me, and I'd cuddle into him, and we'd watch TV."
The last week of my husband's life, he wanted to make love, but physically could not due to his illness. We talked this over as we always did and he knew that hugs, cuddles, and closeness were far more important than the actual act of making love. [64-year-old woman who cared for 64-year-old husband with pancreatic cancer, bereaved]
The importance of closeness to the well-being both of the partner and the person with cancer was emphasized by many of the interviewees. In the excerpt below, one partner describes how important it was to maintain physical closeness with her husband, despite the significant physical barriers that could have served to restrict the expression of intimacy.
We deliberately had kept the double bed. And then, when he got sick, and they needed a more supportive bed, I brought my single bed in, and we got this special height, set at the same height, so that he was always next to me.... I remember the morning he died, I remember cuddling him all night. (...) Just to have your... to have your arm around him was just so, so good. [59-year-old woman who cared for 69-year-old husband with mesothelioma, bereaved]
Reasons for Changes in Sexual Relationships
Many of the participants provided reasons for changes in their sexual relationship after cancer including most notably the impact of cancer treatment, exhaustion resulting from the caring role, and repositioning of the person with cancer as a patient rather than as a sexual partner.
Impact of Cancer Treatment. Cancer treatments were positioned as the primary reason for changes to the sexual relationship. The effects of the treatments meant that there were now physical barriers to sex, which were reported by 30% of the men and 33% of the women. For example, "[h]ormonal treatment has the effect of chemical castration, ie, my husband has no sexual function"; "her poor body has been so cut and chemo has affected her so much that sex is not even possible"; and "non-existent due mainly to the chronic pain syndrome and a less than full confidence in colostomy bags!" For others, cessation or reduction in sex was due to overall bodily restrictions: "[h]e is physically unable to position himself for sex now."
In June an epidural catheter was inserted into my husband's chest and commenced on morphine 30 mgs three times a day. Not only was there no energy or inclination, because of the pain and reduced energy, there was now a "physical barrier" to our relationship as well as all the side effects of morphine. [59-year-old woman who cared for 56-year-old husband with mesothelioma]
Many of the participants also described adverse effects of the treatment such as pain, fatigue, and exhaustion. As one woman participant said about pain, "[w]hen he is unwell because of treatment I tend to be very careful in touching him in case it causes further pain/discomfort." Descriptions of fatigue being given as a reason for changes to the sexual relationship included the following: "[a]s a result of treatment (chemotherapy) my wife is tired more of the time and her libido is reduced" and "[h]e was just too exhausted." The impact of cancer treatment on the self-esteem and self-image of their partner was also identified as a reason for changes to the sexual relationship in a number of cases. For example, one partner commented:
As her health declined she had very low self-esteem caused by loss of hair and muscle tone. When I did have sex at the beginning she would accuse me of not treating her the same as I did in the past and get depressed. [61-year-old man caring for 43-year-old female partner with lung cancer, bereaved]
Exhaustion Resulting from the Caring Role. Exhaustion resulting from the caring role was positioned as the cause of changes to their sexual relationship by 16% of the women and 9% of the men. The responses included the following: "[w]e don't really have any intimacy anymore for reasons including his health and my exhaustion"; "[e]xhaustion, brain still ticking about things to be organized"; and "[e]ven if he was still interested in the sexual side of our marriage I think I would have been too exhausted to have taken part." Participants also commented on a revised prioritization that centered on coping and survival, leaving no time for sex or intimacy.
The sexual issue is really not a priority as all our energy seems to be focused on trying to find a way to beat the cancer. [44-year-old woman caring for 58-year-old husband with prostate cancer]
The Repositioning of the Person with Cancer as a Patient. For 28% of the women and 47% of the men caring for a partner with cancer, the caring role was reported to have resulted in a repositioning of the person with cancer as a patient, which subsequently influenced their sexual relationship. Many partners described emotional effects of the caring role or concern for their partner's feelings and health status. Comments included the following: "[w]ith all the worry and stress that my husband is most likely to die, I now have very little desire for sex"; "[c]urbed by concerns about inflicting pain or discomfort"; and "I just wanted to treat her the same as I always did but I couldn't get the thought out of my head that she was terminally ill."
Participants also reported that they had redefined their role as a carer rather than as a "lover." Some examples are as follows: "[m]y role as a carer has overridden my role as a wife..." and "[h]aving to spend more time on house/garden chores and be carer/nurse, one feels more like a housekeeper than a lover."
When you are a carer it's hard to be a lover, for either party, when dealing with incontinence of both bowel and bladder infections, along with the daily grind of showering, dressing, shaving, etc, then transferring from bed to wheelchair and return. [59-year-old woman who cared for 63-year-old male partner with hematologic cancer]
A number of male participants gave accounts that suggested sex was inappropriate with a person with cancer: "I was very aware of my role as carer and never did anything to embarrass my wife. There was never any inappropriate behaviour." This could result in ambivalent feelings in the face of the partners' own desires, as the following account illustrates:
I feel disgusted with myself that I would inflict sex upon a dying woman, having said that my wife does not object and occasionally welcomes it, saying it is a life giving and loving act and a part of our sacrament.... I was never a fast lover, but now I try and get it over and done with for her. [45-year-old man caring for 44-year-old wife with breast cancer]
A number of the women participants also described positioning their partner as a child, a position that was seen as antithetical to sexuality: "it's like looking after... one of your children now."
Partners' Feelings About Their Changed Sexual Relationship
A number of the participants gave accounts of the emotions that they experienced in response to the changes in their sexual relationship after cancer, with accounts evenly divided between positive and negative feelings.
Positive Feelings. Accounts of positive feelings were provided by 17% of the women and 16% of the men. Many participants described feelings of understanding or acceptance of the effects of cancer or caring on their sexual relationship. Accounts included the following:
Treatment makes my partner feel sick and makes me worry about him so this means we don't feel up to sex... This is not an issue-just a fact/reality of current situation. [39-year-old woman caring for 53-year-old male partner with lung cancer]
He is not up to performing and he has talked to me about it several times, but I assure him that I understand. [66-year-old woman who cared for 66-year-old husband with colon cancer]
A number of participants also reported feelings of affection and companionate devotion:
Sexual urge had gone but my husband made me feel the most loved and cared for woman on this earth by his loving actions, his consideration, his caring attitude and the advice I sought even up till 12 hours before he died. I loved this man totally and he me. [68-year-old woman who cared for 69-year-old husband with brain cancer, bereaved]
[Husband] has multiple brain tumours, lung tumours and clots plus multiple liver tumours so I just hug and reassure that I am here for the "long haul" come what may. [66-year-old woman who cared for 66-year-old husband with colon cancer]
The cancer experience was positioned as having brought the couple closer together by some participants, with one man saying that he "probably has a more affectionate relationship at this point in our lives, and marriage" than before the onset of cancer and another commenting that "with the exclusion of sex, our intimacy is closer probably than it's been for a long time." Increased emotional closeness, despite absence of sex, was also evident in a number of the women participants' interviews:
We are so much closer now than we were... we wouldn't be as close now and we wouldn't be able to talk about absolutely anything now... Just seeing him at night, just makes my heart just go hshshsh... Whereas before I don't think we appreciated that about each other. [29-year-old woman caring for 33-year-old husband with brain cancer]
Negative Feelings. Accounts of negative feelings in response to changes to sexuality were reported by 13% of the women and 21% of the men. These feelings included sadness that their sexual relationship was "lost": "[t]here is just an enormous sadness that we can no longer have this intimacy..." and "[s]till this whole traumatic experience has left me feeling very upset." A number of participants also reported with self-blame, "[n]o sex for 12 months-more my fault," or rejection by their partners, "I felt excluded and unwanted. Sex became a chore and mechanical" and "[s]he has absolutely no sexual interest in me whatsoever."
[S]ometimes you feel guilty that you've got, you know, disgust about it or you know the thing now starts to rot and you feel disgusted by that. [61-year-old woman who cared for 52-year-old female partner with lung cancer]
I don't feel the desire to have a physical relationship with my husband. It almost makes me feel ill to even contemplate it. His whole physical appearance repels me. [52-year-old woman caring for 55-year-old husband with prostate cancer]
A lack of fulfillment in relation to sex was another common feeling: "[n]ot able to relax and enjoy"; "[o]ften feel frustrated that it doesn't happen like it used to"; "[a]t times, I have considered having an affair purely for sexual gratification"; and "leaves me less satisfied." Some participants mentioned feelings of perceived obligation. For men, it was usually in relation to feeling that their partners felt obliged to provide sex. Examples included the following: "[o]n the infrequent occasions we now have sex she wants it over and done with as quickly as possible" and "[s]he became less interested in sex and only accommodated me as if it was a wifey duty." For women participants, obligation was positioned in terms of themselves feeling obliged to engage in sex.
At the early stages of the diagnosis I felt that I couldn't say no to him which put a lot of pressure on me. I had to make sure that I could respond to him and not give him any chance of feeling that I didn't want to make love to him. [59-year-old woman caring for 63-year-old husband with gastric adenocarcinoma]
A small number of women participants shared negative feelings regarding family planning and fertility:
Prostate cancer has required removal of the sac that produces sperm. I am 36 and had always taken for granted I would fall pregnant in the most natural and intimate way. Once my partner is stronger, we will seek advice from an IVF Clinic regarding artificial insemination (hence my partner has secured enough in the sperm bank!). Still this whole traumatic experience has left me feeling very upset. [36-year-old woman caring for 59-year-old husband with prostate cancer]
Discussions of Sexuality With Healthcare Professionals
In response to a question regarding whether a healthcare professional had discussed sexuality with them, 20% of participants indicated that they had. The rate of discussion differed across cancer types, ranging from 50% of prostate cancer partner carers to 0% of respiratory cancer. The rates across the other main cancer types were 33% for brain, 33% for pancreatic, 30% for breast, 29% for gynecologic, 20% for multiple sexual, 17% for colorectal/digestive, 17% for mesothelioma, 15% for multiple nonsexual, 15% for other, and for 9% hematologic. Of those who had discussed sexuality with healthcare providers, only 37% indicated that they were satisfied or very satisfied.
In the interviews, a number of the partners commented on their discussions with healthcare professionals, in each case giving a critical account. When they asked about sexual matters, participants reported being told as follows: "[o]h you don't need to know that and things like that." They were told that they were "irresponsible to be thinking about having children" in raising fertility as a concern. Most, however, gave accounts of sexuality not being discussed at all: "I haven't got a lot of medical advice about how we should continue to conduct our intimate relationship" and "they did not educate us on anything... at all."
[I]t's not properly addressed by the medical profession, it is just completely glossed over. And I can remember, you know, we were sitting when the diagnosis came through and the guy said well, you know, you'll get these hormone pills and we'll give you an injection into your stomach and of course that will be the end of your sex life; and we're just sitting there (...) That was the end of the discussion. [67-year-old woman who cared for 85-year-old husband with prostate, bowel, and lung cancer, bereaved]
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