Wife who is struggling with her emotions

Wow Dudebear , that’s a lot happening in a short time and I am not surprised in the least that you are stressed.  There are lots of wives on here who no doubt can help and I am sure some will be along soon.

From a male perspective, when I went on HT my libido went from 100 to zero almost overnight.  Before cancer, one of my biggest fears was losing a sex drive, I  went to completely not interested.  I didn’t have any desire and had no physical ability to have an erection and I was completely unconcerned by it.  My worry was how this would hit our relationship, but to be honest I think my OH was slightly pleased .  Anyway if anything, it has probably brought us closer together in lots of ways (I was 67 at diagnosis).

Obviously this is from a male perspective but hope it might explain how your OH might be feeling.  Best wishes David

Good Morning Dudebear 

A warm welcome to the MacMillan online Prostate Cancer Community. I am so sorry to find you here under these circumstances. Your problems with your husband's health, the NHS and now your brother aren't making life easy at all. May I make a few suggestions:

* Do you have a "Maggie's" near you - these are drop in centres for a Nationwide cancer charity - you can just call in for a cup of tea, a chat and some help - 0300 123 1801 or www.maggiescentres.org

* Anxiety UK can help with your feelings, give them a call on 0344 477 5774 or www.anxietyuk,org.uk.

* Here's a link to our information and help pages for "Sex and Cancer" - this may be of help - https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/sex-and-cancer

* Our support line on 0808 808 00 00 (8am to 8pm 7 days a week) can offer you and your husband plenty of support - they are a great bunch of people who are more than happy to help - please give them a call.

No one should tackle cancer alone and you have taken a very big step in putting your feelings down in this post. We as a Community are all here for you and anything we can do for you we will. I am sure more Community members will be along with support (David2017 has posted as I am typing this).

If I can do anything for you please let me know.

Best wishes - Brian.

Hello Dudebear, I’m never quite sure who bears the brunt of this prostate cancer diagnosis - the man with it or the partner. I have gone through all sorts of emotions in the last two years since my husband was diagnosed - anger, fear, anxiety, grief for the changed circumstances and anticipatory grief at the thought of losing him! I think I’m developing hypochondria too! I am far far more aware of our mortality and every twinge I have must surely be due to some horrible, dreadful disease!

I find some relief in keeping my brain occupied with other things ( until my hypochondria sets in and any simple lapse of memory or concentration  must surely be dementia!!!) I also try to stay very much in the ‘here and now’ and not worry about a future which might or might not happen or a past that I can’t I happen.i also find the support here on this forum invaluable. 

re the intimate side of our marriage. Well, at first everything stopped - even a quick kiss or a hug! My husband withdrew within himself and would not engage in any talk about the cancer, his treatment, his feelings etc - with me,with his medical team, with anybody. It made me feel very lonely! And….i told him! (Eventually). He has made no sexual overtures and I have not wanted to humiliate him by trying to and him failing. I do now get some kisses and cuddles, though! He says he has ‘nothing down there’ - 3 months after finishing ht. I don’t know how things will go but I know one thing, I would rather have him there beside me and no intimacy than 6ft under.

Re the fears of radiotherapy. I was a nervous wreck beforehand. They warn you of all sorts of dire side effects. Of course, I knew my husband would get the whole lot!  Actually, our only problem was the tiredness from the daily journey and he had some bloating and a headache a couple of times! For us, , looking back, the ht was the harder cross to bear. I now think we should have asked for more help with the side effects rather than leave it to get to such a point that he felt he couldn’t cope with all his illnesses any more.

I am really sorry to hear about your brothers diagnosis. This, too, would have been a terrible shock for you and your family. Although it is very hard to bear such a diagnosis, sometimes we just find the strength to carry on and show our loved ones how much we love them, what lovely memories we have made together and give as much support as we can, knowing that, in the end, that last goodbye is going to be sooner than we hoped. Yes, it’s terribly, terribly painful but somehow we find we have the strength.

i hope the hip replacement goes well abd i hope this ramble might have helped in some small way <hugs>

Hi, until I had my prostate removed we had an active sex life. Although penetrative sex was rarely an option due to vaginal discomfort we had developed alternative strategies. Now I have ED and am totally incontinent which has put our sex life on hold. We have said that we'll try again 6 weeks after I have had the Artificial Urinary Sphincter inserted (11 September so watch this space). I did once try to interest her but was quickly told no, which left me a bit upset.  I guess I'm apprehensive about what my physical and emotional reactions will be, assuming that the ED is overcome. We love each other just as much as ever and wouldn't be without each other.

This is just another male perspective. I learned vary late in life that bottling stuff up is not a good strategy and welcome Millibob's suggestion of Maggies "counselling"; they also offer alternative therapies such as massage etc which might be of interest to you.

Take care of yourself and best wishes.

Hello Dudebear .

A warm welcome from me as well. My husband was diagnosed with advanced metastatic prostate cancer over 4 years ago now and is still going strong even though he is now 80 but I am 11 years younger. Like you I would bottle things up to start with as my husband would get very upset if he saw me in tears and we both skirted around the questions of how the diagnosis was going to affect us. He was worried that I would be OK financially when he was gone. I was worried about how I would cope on my own - I think this was exacerbated because I had already lost two husbands prematurely to cancer and heart failure. I was also afraid because I didn't know anything about prostate cancer, what it involved and how it would affect my husband especially as he was initially told he may only have 6 months. After the initial shock my analytical head took over to understand what we were facing and what WE could do to beat the odds - prompted by the oncologist saying he could do 50%, the other 50% was down to us in terms of having a positive attitude plus lifestyle changes such as exercise and diet. Once I started studying the recent literature I realised that even metastatic prostate cancer is no longer a death sentence in the near future. I am the scientist in the family so my husband relied on me to do the research on the treatments being offered and summarise the risk/benefits and then decide on the action. Four years ago treatment such as triplet therapy wasn't available but I made sure that the therapies he was being offered were carried out on the latest machines and by experts in their field. What we also found out is that some forms of prostate cancer respond better to say chemotherapy whilst other forms respond to radiotherapy so if the first line of treatment is not so successful then try something else. This also applies to hormone therapy.  Bottling things up did neither of us any favours and being able to discuss things has helped us get through with a plan. The first thing we decided was to do things more spontaneously and live each day to the full. We also put our house in order with such things as wills. You are younger than us so maybe have a word with Macmillan who have experts who can help with how cancer can affect you financially and what might be available to you. Like a lot of men my husband was worried that he was no longer able to perform and the desire to do so disappeared soon after starting HT. I can understand your sexual frustration and your husband is showing willing to explore options available with the andrology clinic. Things are available to help with penile health but it will take both of you to work at different techniques to find what works best for you both in a loving and sometimes light hearted way - it could be fun trying. We have found that having a lot more hugs, kisses and cuddles also helped and in fact we have drawn a lot closer together since his diagnosis. For me, having him here with me outweighs the loss of sexual intercourse but we are in fact more physical with each other.

With regards to radiotherapy, the machines and expertise have improved considerably over recent years both in terms of accuracy - so less side effects and better disease control - my husband has had 2 lots so far with the first 4 years ago to the pelvic area which was successful in killing off the cancer in that area and more recently a targeted radiotherapy to distant mets. His form of cancer is more receptive to radiotherapy than chemotherapy. Radiotherapy is a longer term therapy which continues to work for many months so you might not see immediate results.

Another reassuring thing is that the experts are saying they still have more tools in the toolbox for further down the line if necessary.

Please ask any questions and we will try and help.

Hello. My husband was diagnosed in may 23 and I was in complete shock, hardly eating and not sleeping. My way of coping was to throw myself into research, I must have driven everyone mad on here with my millions of questions. Then when things weren't moving quickly enough at the hospital I was spending my days complaining, but I did get results. I also bottled everything because husband was so positive and didn't really want to talk about it. Strangely a year on I often feel quite stressed and emotional over the slightest thing. I have put it down to a delayed reaction. Somehow we cope and get through it, our bodies are amazing. Good luck with your journey 

Interesting what you say about thinking every twinge is some thing dreadful. I have become the same over the last few weeks. I even thought about having counselling to help me. I have put it down to a delayed reaction of trying to be strong all last year. Now things have settled down and husband continues to do well it is like it is hitting me know.

Hello Shar, this, for me, started at the time just before radiotherapy started. I am positive that ‘galloping cancer’ is a diagnosis yet to be discovered! I think you are right - it’s all wrapped up with our husband’s diagnosis. I have also caught myself thinking more about our much older age, what it might mean and our eventual demise. Not sure if this is an age thing or as a result of the wake up call of the cancer diagnosis? 

A( separate from PC) appointment for my husband yesterday. We came away and he thanked me for fighting his corner  I won’t give up tackling poor or lackadaisical care! X

Goodness Worriedwife you could have been describing me! 

Husband has relapsed after HDRT brachytherapy 10 years ago. Currently on Zoladex and appointment with oncology on 3/9 - which I’m already dreading. PET scan has show escape and areas of concern. 

Despite him being very philosophical and taking each step at a time - he’s always been like that! - I almost feel I need to do the worrying and asking of questions. I also feel I need to be strong, both physically and mentally so every my every twinge seems magnified and I seem to have become hypersensitive to everything. Almost like living permanently on high alert.

Much as I’m dread what we are going to hear at the appointment, I’m hoping there are still options and once we have a course to follow, I won’t feel like we are flailing around in the dark. Your posts are unbelievably reassuring and positive and remind me none of us are alone in ‘the club’ Thank you and everyone on here for your contributions. They are a source of so much comfort. X

Hello JagChamp . I think many of us wives and partners can relate to the feelings WW and Shar have expressed but WW does it so much better than I ever could. My doctor puts a lot of the blame on stress which can manifest itself in many ways.

I am sure that there are more options open to your husband so all the best for the 3/9 and let us know the outcome.