I dont know if this is a similar experience by other carers/partners but my husband had (bowel) cancer in Dec 2013. Subsequent to that he got secondary cancers in his liver (2, about 10 months apart). He was very lucky and the cancer(s) was caught very early and his outlook should be cancer free. He has some neuropathy side effects from the chemotherapy treatment. He was fortunate enough to be on an old superannuation scheme with the public/government sector and could retire early (was meant to be aged 56). He was able to retire at 53, and he grabbed it with both horns because he feels that the cancer has reduced his life by at least 10 years, and so he wanted to take the opportunity to not have to work for an employer ever again. His pension was a lot less than he had anticipated, and we have a large mortgage. I feel that we cannot afford for him to be retired so soon. He is still very able bodied and fit to be able to work. But his mindset is that he has put in 30 yrs of employment, he has had cancer and he now wants to enjoy life. He thinks an employer will not hire someone over 50 with cancer/thinks his chances are slim to be employed (but really he has lost a lot of confidence). I do not begrudge him wanting to be retired, especially after having had approx 3-4 yrs of dealing with the cancers. But he still has responsibilities, a house to pay off and maintain, bills to pay, his 3 adult girls (from his first marriage), travel etc. Anything other than the mortgage and bills we dont have enough money for, but that doesnt seem to worry him. He is happily in his own world, tinkering away in his workshop (music and 3D printing) and does next to nothing around the house, while I work full time (plus a side part time job), most of the housework, all of the gardening, I do projects, repairs and maintenance of the house, sort all the bills and his medical appointments (trust me, its easier if I do lol), help my mum and ailing step-father, and the list goes on. What are peoples opinions about this? Has anyone else experienced their partner feeling they have a right to remove themselves from reality regardless of their responsibilities to the household and family around them. He doesnt think he is depressed, and wont take medication for it if he was. I guess I am trying to get my head around it, as this is not what I would do to my partner, and I realise I need to walk in someone's shoes to be able to preach this, but I know my nature and I wouldnt expect my partner to pick up everything and live on the bare minimum when we still have 20+ working years in us. Thank you for any guidance you may have. Regards, LoveLost
... View more
Dear kj, Firstly I want to apologise that it has taken me so long to respond to you. I kept reminding myself that I owed you a reply, but I wanted it to do justice to your response, and give my all in return. My husband and I have been going through more things (with a third cancer surgery - a recurrence of the liver met from the original bowel cancer), and have been unable to give my reply the full attention I wanted. When I first read your message, I was brought to tears. The fact that you felt my post was worthy of being shared with your wife and that it started the process of communication again about such an intimate, private and difficult subject, meant the world to me. And it hit me even more because I am aware how hard this is for men to open up, even to their closest love and soulmate in their life (let alone a stranger). Such an effect from surgery and treatment can hurt a man's masculinity. But to me there are so many ways a man conveys his masculinity - it is his mind, and with his confidence and attitude, and most definitely in the way he confirms everyday his love for his woman. I really missed making love to my husband through the 18 months of his bowel cancer, but I find that there are many other ways for intimacy, and a woman responds and feels loved by her man when laying in his arms, and feeling the touch of his fingers caressing her skin (or her touching yours). And long gentle kisses. If the act of physical intercourse is not on the cards, just being together, making time to just enjoy each other, hold each other, talking when being wrapped around each other, or just long silence listening to his heartbeat and each others breathing. Its all about focusing on the little things, and feeling the closeness, and not putting the pressure on yourself to have to perform. Love can be shown and felt in so many ways. Its about communicating and finding together what that is, so you dont feel like anything is missing. That is just some of my thoughts, and as you can see, I am very passionate about this subject, so excuse me if I am a little forward :-). Anyway, your thoughtful message made my day, that perhaps I had helped another person in this crazy world. I hope you and your wife are finding a closer connection and rekindling what you have shared for obviously many years together. Thank you again.
... View more
Dear WayneJ, Thank you for your comments and response to my post. I am sorry you have been through so much and are in a similar boat. Im getting to realise there are a lot of us like this. I completely agree with your words about "not getting it, and not being able to get it, are worlds apart" - and that is what hits home really hard. My husband struggles each day knowing what we have lost, what we had and how wonderful it was, to suddenly nothing, and no matter how many things we try, what we once knew is just gone. My husband has diabetes and injects himself twice daily - how much of a pin cushion can a person be? I feel there needs to be a support component with any surgery. My husband just had surgery for a third time relating to cancer, and it was full open surgery, with lots of risks, more months of recovery, and also the recommendation of an epidural with all of its associated risks. But when you are in the hands of the experts trying to save your life, or extend it, its hard to say no even with all the risk "what if's" you are confronted with. And sometimes it all happens too fast because the doctors want to get you in asap and eradicate the disease, so you dont have time to process it. We have been lucky to be in the medical system (through my work) and diagnosis, tests and surgery all happens in two weeks. The communication and lack of support/counselling to really understand what is going on, what you have, the medical and emotional impact, and the outcome of fixing the problem, it is the part of the medical system that lets people down, and ultimately contributes to failed marriages and other issues such as finance stresses. I was speaking with one of my doctors, because I was asking how much everything was going to cost all the way along, and he says people are even too scared to ask about the cost of things. They just go through the process, pay the big bills and then have to deal with the consequences of the expenses while trying to cope with the physical, mental and emotional repercusions afterwards. It certainly is a rollercoaster. He agreed with me that there needs to be more upfront discussion before and after the medical procedure. I am aware everyone is different, and people will react differently, and even those who understand what is going on, and look together on the outside, it can blindside them - like it did to us. And it doesnt always happen straight away, because you focus on the surgery, the recovery, getting back to routine, kids/family/work etc, and then as the changes or loss become greater, then the impact hits. As you can tell I am passionate about this subject, and feel the need to express my thoughts any change I am given. Thank you for "listening" to me. All the very best.
... View more
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".
... View more
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.
... View more
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.
... View more
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.
... View more
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.