Loss of Sexual Intimacy and Relationship Dynamic Change

Occasional Contributor

Loss of Sexual Intimacy and Relationship Dynamic Change

My husband was diagnosed/treated with bowel cancer in Dec 2013. He had successful surgery (thank goodness no stoma bag) and went through 6 months chemo. He suffered with neuropathy from the treatment (affecting his fingers, toes and genital functions). He also has diabetes which creates its own autonomic neuropathy, so the two together has caused a stronger and longer lasting neuropathy. In Dec 2014 he had a secondary liver mets. All in all, as far as cancer journeys go, we have had a very positive experience. I love and support him with all my heart and I have done everything for him relating to his illness. I work in the medical industry so the colleagues I work with have been a massive support in this challenge, and I could not have gone through this without them in my life. I have had the benefit of having his surgeries at my work, been recommended to some of the best surgeons in Melbourne, so we have been so very fortunate and lucky in that respect. My reason for coming here is that I am looking for a starting point of getting support. I would like my husband and I to be able to talk to a counsellor or a group of like minded people. I know what I am experiencing is happening to others, but I cant find forums where people are openly talking about this. Its private and personal and I understand why some people cant talk about it. But its a big part of who I am and the side effects of cancer have changed one very big part of our relationship. We are both young. The effects of the chemo treatment (and his diabetes) neuropathy has affected his sexual function. For 12 months while he had the cancer, surgery, chemo and recovery, we didnt have sex (and rightly so, he was at his worst and suffering). I was by his side through every step of the cancer process. Then for the next 6 months as he was given the all clear, and getting back to normality, the sexual aspect didnt improve. His stamina, his libido and the functioning of his anatomy didnt work like they used to. We spoke to our GP and tried all manner of things (Cialis pills) to no avail, no improvement. He feels at this point his sexual function is worsening. We dont know if it will get better. He feels like he has failed me, he is not the man I married and cant do to me what he used to (and that was a major part of our life, our relationship). Intimacy is so very important to the both of us (moreso myself). We are a very open minded couple and we communicate extremely well. We can talk about anything with each other. He was always able to tell me what he was going through at each stage of his journey, if he was unwell, tired, feelings and emotions, what he needed etc. We still hug and kiss, and talk and comfort each other, but the sexual intimacy and connection is lost. So .... we went down an unconventional path. We are now in an open polyamorous relationship. I didnt want to leave my husband, but we needed to deal with the loss of intimate relations, and he didnt want to lose me. He said he didnt own me, and knew it was important to me, that I had supported him for so long through his cancer that it was the least he could do for me. So, for the last 18 months I have one partner who is a big part of our lives. He and my husband are friends. We juggle the relationships and time with each other quite well. I am back to my very happy self (which my husband knew was lost, he could see how no intimacy in my life suffocated me and put such a strain on my inner being). My husband also has a partner and they share a sexual intimacy at times. She is not aware of how good he was previously, so she cannot understand the loss that has come between my husband and I. My husband sees the wonderful connection I have with my partner, and of course he deals with the ups and downs of emotions from this. He is not a jealous man in the slightest (he has compersion) but has a hard time dealing with what has been lost. He hates what cancer has done to him and to his body, especially at such a young age. And that things will never be the same again. We are both so grateful he is alive. But every time we talk about it or try to be intimate, we are only reminded of what cancer has taken from us. He says that sometimes, the cure and outcome has been worse. We are strong and have each other, but there are times he wants to walk away and allow me to have a life full of the love that he cant give me, and another man can. But we still have so much life and living to do together. We are best friends, have a lovely home, wonderful friends and family and support, our jobs and pets etc. But one part of our relationship has decimated his outlook, and changed so much. We never thought we would be in an open relationship, but here we are. We make it work, and it does, but often he says "I wish it was just us again", and he and I know it will never be the same again. How do you deal with these intense emotions and what we have been left with after the last 3 years? I would love to hear other peoples comments about how the affects of cancer and treatments have affected their sexual intimacy, how you cope, how you deal with the emotions, how you deal with the needs. I know it is different for a lot of people, but it is a very important part of two people. And this has been lifechanging for us. Are there support groups or professionals that deal with this specific nature. We are dealing with everything else very well.
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Super Contributor

Re: Loss of Sexual Intimacy and Relationship Dynamic Change

Ah, the elephant in the room. I'm so glad you posted this! It needs to be talked about more, and I think couples, particularly young couples, need to be given advice about this. My husband had chemotherapy in 2011. We were asked to attend an education session beforehand where we learned about physical side effects such as fatigue, dealing with bodily fluid spills safely, and dealing with dietary issues, but nothing was mentioned at all about the likely effects on our intimacy. It was self evident that sex was not going to be on the agenda for the duration of the chemo (because of cytotoxicity and fatigue), but it was never actually talked about, which meant that I for one was not prepared for my bout of enforced celibacy, and didn't handle it as well as I would have liked to-I felt more like a single mother than a wife and got really cranky about the topic, which only made things worse. I was also reluctant to approach my husband for anything physical, because I didn't want to fatigue him more. I was quietly appalled when, near the end of the six months, while I was anticipating things getting back to 'normal', we were told there would likely be a six to twelve month recovery period! In the end my husband got his full energy back after about four months, and I realise that's pretty quick compared with some, but I still wish we had have been better prepared. I haven't heard of any supports to deal with this issue. I've been a member of a support group for young adults dealing with cancer (I was 35 and my husband was 39 when he was diagnosed) for about 5 years, and the issue has never been touched on. Obviously it is deeply personal, but it is something people need to be coached through, or at least informed about, so they can plan for it.
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Occasional Contributor

Re: Loss of Sexual Intimacy and Relationship Dynamic Change

Thank you for your reply and comments "Little Stitcher". Sorry to hear of your husbands health also. I agree wholeheartedly that there needs to be support groups or more information given to patients/carers, or some kind of couples counselling to not only let them know the possibility of what they are in for (we were told all the possible complications and results of them, but you are bombarded with so much information it doesnt sink in and all you are focused on is getting the cancer eliminated). But also for after-care support 6mth-24mths after the surgery or treatment. You support each other and be a carer for your partner for so many months, sometimes years, and then when you think normality begins you are suddenly left empty and nothing is as it was before. It is a massive dynamic that is forgotten about in the medical field, the personal intimate closeness of a relationship, and if this is damaged how do we all pick up the pieces? There are so many supports for patients, families and carers of loved ones going through life limiting illnesses, but not really for those who have been treated/cured and go back to their lives. People need to know the long term effects and certainly the psychological impact and to know that communication between partners is key because if their feelings and emotions are bottled up, this can damage a relationship. My husband and I have been very lucky in that respect and approached all sorts of options to overcome the loss in the relationship, and we are better and stronger for the path we took (and I know it is not for everyone, but you dont know until you are faced with such a situation). Thank you again for your comments, they are greatly appreciated. I know I am not alone and I wish more people would openly and honestly discuss this very personal issue.
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Occasional Contributor

Re: Loss of Sexual Intimacy and Relationship Dynamic Change

Hello , I thought I would pass on some information from the male point of view. During my treatment I was not capable of anything let alone intimacy. At the conclusion and during recovery I noticed that a 30 kg weight loss had resulted in a new body. One so thin that it creates a sense almost of shame. Fortunately my wife was understanding and never complained and just accepted the new reality. I don't know that there is much else that anyone can do. Physically intimacy was not possible. I suppose if it happened the other way and it was my wife who was ill I would hope that I could have the same level of understanding that she had.
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Contributor

Re: Loss of Sexual Intimacy and Relationship Dynamic Change

You should check out Rekindle if you haven't already. http://www.cancercouncil.com.au/104755/get-support/when-treatment-finishes/face-to-face-programs/rekindle-relationships-after-cancer/ I was single at the time of my diagnosis. Still single after 2 years in remission. The thought of being intimate again somewhat terrifies me. The scars I have (from my port and the other from a biopsy) are pretty small but they make me feel self conscious. Sometimes I feel like I'm not as attractive as I used to be. Also, getting into a relationship means that I have another person who will be hurt when (and if) the cancer comes back. I'm on Tinder and have been open about what I have been through on my profile. I have several matches! It has been good so far but get the odd person who just wants to ravish my fragile, broken, scarred body. It is a self esteem boost but not what I want. Definitely recommend Tinder for other single cancer 'survivors'.
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Contributor

Re: Loss of Sexual Intimacy and Relationship Dynamic Change

Obviously Tinder works well for poly couples too (although sounds like you don't need it). Didn't mean to come across as judgemental!
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Super Contributor

Re: Loss of Sexual Intimacy and Relationship Dynamic Change

Thanks an important post ,I will be according to my oncologist officially be in remission in a few months having reached the 6 year mark,part of my body was through the doorway to the other side but I somehow escaped ,after surgery and treatment my body took a hammering like many-who face cancer and the effects. For a long time I had no libido this did not phase my wife ,she is on medicine that also lowered her libido it was left unspoken we had talked about my possible demise and her future but not about our sex life or lack of it a change of medication is not an option .I am from the generation where it was unspoken We are not young We have noticed a return of a small increase in libido for me ,my wife's libido has now completely gone after reading your post I passed it to my wife to read we have started to discuss things,after my brush with mortality I try to leave nothing unspoken yet we were silent on our sex life I love my wife very much intimacy was a great part of our lives,and yet no suggestion is given to how to help couples facing this dilemma Thanks for your post and to other responders .My wife and I are now talking to each other about this subject.It is now my turn to try and repay my wife for all her love understanding and compassion she has lovingly shown me.We will work through this.As a male it is uncomfortable writing this. kj
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Occasional Contributor

Re: Loss of Sexual Intimacy and Relationship Dynamic Change

Hi Paulpwtierney, thank you for your message and response to my post. During my husbands treatment he was not able to do too much for very long (i.e. things around the house etc). His stamina was severely depleted and his feet were in pain from neuropathy. He was able to go to work when he was ready, but the moment he didn't feel up to it, his work colleagues would come to his rescue and cover his shifts. He organised his shifts around his chemo treatments and his side effects as they usually developed into a pattern. He was very lucky to have a lot of support. I supported and cared for him and did all that I could, and I never once asked for any intimacy of him. I wanted him to focus on getting better. There were occasions though, when he thought he had enough energy and did feel ok and wanted to be with me intimately. But then he would be left drained and no energy and I would feel guilty that his one little ounce of energy was used for my pleasure (of course he wanted it too). My husband and I also accepted the new reality for quite a while, but we both understood each other and knew what a big part of our lives intimacy was. I couldn't imagine not having intimacy in my life. We were lucky enough to be able to talk this through and find a possible solution.
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Occasional Contributor

Re: Loss of Sexual Intimacy and Relationship Dynamic Change

Sounds like me. No energy for a long time and " intimacy " is draining but does signal a return to some kind of normality. Yes , when the patient comes out the other side a new pattern will emerge and I suppose both people need to realise this. I also was fortunate that some work colleagues texted me from time to time with humourous stories about the workplace and people we knew. It is too easy to lose touch altogether with reality.
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Occasional Contributor

Re: Loss of Sexual Intimacy and Relationship Dynamic Change

Hi Nello. Thank you for your reply and for the link to the Cancer Council Rekindle. It looks very interesting and I am glad there is a resource such as that. I will register my interest, speak with them and do the survey and go from there. Hopefully it will prove to be a valuable resource. My husband and I are very open to looking at lots of options, but there is also the psychology of things to deal with. My husband is very reluctant to try medications to increase his genital functions (even though we have once) as he says "I don't want to be controlled by and rely on a little pill to be able to make love to my wife for the rest of my life". So that is a really hard aspect for him to come to terms with. I think in your case, the point you made about not wanting to get into a relationship because you will hurt another person if the cancer comes back, is preventing you from such happiness. I do not mean to preach to you, and I understand your concerns about worrying about another person. But you need to realise that people are strong, and that you will meet the right person for you who wants to be by your side. We all suffer some sort of loss (family, pets etc) and death is everywhere in this world, we can't escape it. So you should give yourself the opportunity to love and be loved, talk openly and honestly about your medical condition, and when you are ready you can confront your vulnerabilities of your scars. The right person will love all of you, and as they say, it's what is inside a person that counts. If you are a good man with a kind and loving heart, the marks on your body are superficial to another person. They are big to you, because they are constant reminders of what you have been through, but they are also reminders of what you have survived and keep surviving. I work in palliative care, and in my experience when it comes to the end, its better to have people you love with you. I think any dating site is a great boost to the self esteem, so whichever one people are on, they should keep persisting. Its just another way to meet people in this very technology developing world, and you can pace yourself, work on discovering each other via communication, rather than the pressure of a "blind date".
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