This is my first post - so I might be repeating something you’ve heard before - but I can’t find any posts from men who are carers & who are finding it difficult to cope.
Lots of threads from women sufferers who have had bad experiences from partners and those from men who are doing excellently (it seems) in caring for loved ones - but am I the only bloke who isn’t finding the whole thing a breeze?
I’ve been getting a hand lately from Macmillan and from St.Rocco’s - which has helped a great deal - just in time I feel, as I was beginning to reach meltdown.
My wife was diagnosed with secondaries a year ago and has been getting increasingly negative in the last few weeks - and I don’t have the skills to help her. (She sees a psychologist every few weeks who has helped a little, so far.)
It has taken me a while to realise that stress has led to loss of confidence and self-estime - which has affected my work - which had become a vicious circle.
I’m all too aware that my problems are relatively trivial compared to my wife’s - and most of you who will be reading this - I just wondered why men can’t seem to talk about this.
I wish I could answer some of your questions. I admire you for caring for your wife and I am sure you are doing a good job. However, I am bumping this back to the top in the hope someone out there will be of more help.
You might feel as tho you are on your own but please believe me people on this Forum will be here for you.
Hi Keith,
I don’t think anyone should underestimate the effects of a secondary diagnosis on the partner/carer.
My husband is great from a practical point of view but will not talk to me about my cancer or his feelings.
I have found this very isolating and have had to find other ways of coping with my diagnosis and finding support where I can.
But recently my husband is becoming more and more affected. He is short tempered, tired and losing concentration.
In fact he has had 2 prangs in the car in one week. He is usually a very good driver. I’ve told him it’s not surprising and asked him to think about counselling or even getting some antianxiety/depressants as I do. He didn’t even respond to this suggestion!
It sounds like you’re doing well. I just hope you and your wife are able to communicate because I think this must help both of you.
Regards
Kelley
Oh, dear: yes, he sounds worse than me. A bad temper and having accidents are classic examples of stress. But men are such poor communicators, you will be doing well to get through to him it seems.
If he’s been OK at talking before I think he’ll respond to your requests to speak out. If not then you have an uphill struggle.
I sometimes find it difficult to respond to suggestions - sometimes they seem so way out that I just don’t know how to answer - keep trying (you know that thing with men: you have to ask questions that can be answered ‘yes’ or ‘no’!)
I’m not sure that pills work for everyone - his lack of response probably means he doesn’t think they will - counselling though would be a good idea (it certainly has helped me) - sometimes you have to give suggestions time to sink in.
The macho thing tends to work against us men too - perhaps he might regard outside help as wimping out - ask him.
There are a lot of very professional helpers out there for free - waiting for his call.
I’m sorry you have to deal with the isolation as well as the cancer - extra difficulties you don’t need. But it could be his temper is anger at himself - he knows you need support and knows he’s falling short - and that becomes a vicious circle. Of course I could be wrong on every level - but have you sat down with him and asked him why he doesn’t talk - he might think the answer is blindingly obvious - so doesn’t need explanation - you need to tell him it does. (We men think you should be mind-readers!)
Silence between a couple adds to misunderstanding - and right now is when complete empathy is most important. I’m sure he knows all this - why not ask him to read this and discuss it with you - it could be the opening he needs (or not.)
I’m feeling around in the dark here - but since my wife and I got things out in the open recently and cleared the air we are both benefitting from it - I’m sure your husband wants to do the best for you - and what helps you helps him too. If he continues down the non-coping road then he won’t be able to give you the practical help - tell him that worries you.
Keith,
You have read our situation so well. I have tried to talk to him and ask the questions but after a lifetime of dealing with things his way, it’s very hard for him to change.
I’ve also become used to having to deal with things myself and have stopped trying with him.
But I do feel worried about how things are going at the moment.
At the moment he is away attending the funeral of his aunt - yet another stressful event - but I may try to pluck up the courage to show him this thread.
Thanks for your insight and suggestions.
Kelley
I hope he takes your suggestion the right way - but if he knew how it hurts you to feel isolated I’m sure he will respond in a positive manner.
Another thing would be to write down, rather than speak, about how you both feel - then swap paper and read…
You seem to be coping incredibly well as far as I can tell. I haven’t had to face hearing a secondary diagnosis (and still hope I will not), and I don’t know how I could cope with that myself. My wife’s original primary diagnosis was pretty bad prior to the pathology report (which was actually nowhere near as bad as it turned out), so I have some idea of how it would feel.
I can really understand what you say about work, though. When you are working, you feel bad about not being with your wife. You find it hard to concentrate anyway, so your productivity goes down and you have to spend more time trying to keep up. When you are spending time with your wife, you feel guilty that you are not working to catch up, even though you know that your wife is far more important. You are worried about getting behind with your work, and because of that you feel that you are letting Her down, because you are supposed to be the one who doesn’t have the disease and so should be able to keep things going.
You are right, the communication is so important. I think myself and my wife are really good at communicating, but I still worry that something I say might be taken in the wrong way. It is hard to overcome that, but we really must. I think it is important also to say some things even though they may appear to me to be obvious; something that may seem obvious to me may not be to Her (and vice-versa).
I don’t think we should let the “macho” thing get in the way. I’ve never considered myself to be particularly macho anyway, so perhaps that isn’t a big problem for me. I do admit to suffering from the “unwilligness to ask for directions” thing, though I think that is more to do with being a bit introvert. However, I think there are good scientific reason for that as well. My wife has a book called “Why women can’t read maps and men won’t ask for directions” (or something like that), which I intend to read after she’s finished with it.
Just a few ramblings as I don’t really have any answers. I think I am one of the husbands who seem to coping well, but it doesn’t really feel that wa a lot of the time. It’s probably that She just makes me look good.
I hope you and other partners are able to continue discussing as well as asking for support here. As you say, there aren’t many partners posting here, and I do think it’s important.
Hi Keith
I don’t know if I can be of any help to you as I have no experience of Secondary diagnosis. However I am on of a few Partner Volunteers who provide support to the partners of breast cancer sufferers when asked.
I don’t know how many of us there are now, I believe eight or so, so there may well be someone in the group who is a better match than I may be.
You can contact us by ringing the BCC help line and ask to be put in touch with someone who has experienced similar issues to your own.
I may be telling you something you already know, but I did not see a reference to the Partner Volunteers in the chain of postings from and to you.
I hope someone else can help further.
All the best
Steve
I wonder if anyone coud add something to this thread that might help me. My wife’s primary diagnosis was metastatic cancer, so we went through the usual steps in about a week at the beginning of October this year. This diagnosis period was devastating for us - my wife is only 32 and we’ve got a four year old daughter (also we live in Germany with no family from either side living nearby). I don’t think either of us have ever been in such a stressful situation - and my wife comes from Georgia, so she’s lived through a civil war as well as the stress and uncertainty of the war with Russia last year.
The problem I would like to ask about here is what to do when you wife is more or less in denial about her diagnosis? As we’re probably all aware metastatic cncer is more or less incurable (only 3% of cases show long term remission) and life expectancy is not at all good. My wife is convinced she will be one of the three per cent, strengthened to a large extent by her strong religious faith. I am supporting her all I can in this faith in a cure but in my head I know it is highly unlikely and that we will have to face a recurrence some time. She is currently a third of the way through palliative chemo with doxataxel and trastuzumab with pertuzumab as part of a study. So far things look encouraging but realistically it will come back again. This will shake her to the core and I don’t know how I can support her when this happens (hopefully some way off in the future). Can anyone suggest anything?
Hi Charlie, I’ve been living well with bone secondaries since 2003.
I was diagnosed with secondaries from the very beginning.
I accept I will die from this disease but I also still hold out a smidgeon of hope that new treatments will help keep me here for a while longer. I (think) the majority of us do manage, for the most part, to remain cautiously hopeful. Here are 2 links you may find worth a read, some life stories from some Australian women living with metastases, how they cope, live with their cancer. bcna.org.au/images/stories/pdf/messages_advanced_cancer.pdf
And this book, out of print but some chapters are available online, lots of us with secondaries have found this a really, really helpful book, you might find it worth a look. advancedbc.org/content/advanced-breast-cancer-guide-living-metastatic-disease
I had two friends who were convinced they were going to be cured. Sadly they are both no longer here but they lived for much longer than expected and they lived well while they were able.
The passage below is from the book and has always helped me when I’m having a wobbly time.
Good Luck and Best Wishes to you both…xx
Many doctors are reluctant to quote mortality rates or statistics on survival time to patients, preferring to tell them, rightly, that no one can know for sure how long a particular patient will live, and that mortality statistics are based on large groups, and are to be used to weigh decisions about treatment, not as predictors of individual life expectancy. They will explain that since you are an individual, there is simply no way to predict, with any certainty, whether you will be in the larger group that will succumb to breast cancer within the predicted period of time, or the smaller group that lives for many years with it as a chronic disease, or even survives to die of other causes. While initially frustrated, many patients are ultimately able to transform this uncertainty into an opportunity for hope.
Thank you very much for your kind post and for the links, Belinda.
We had a bg discussion about all this last night, including my wife’s sister who’s here helping out. My wife knows how serious everything is but believes that if she can be positive enough and trust in God and in prayer that she will come through this illness. Of course, this is still very unlikely according to current state of medical technology but theoretically possible. And as you say, who knows what might come up in the future? I suppose it’s all a matter of playing for time…
What didn’t help last month was the senior gynacologist promising us decades - a little bit of research showed that he was talking though the wrong hole! And the nurses looking at her as if she were already half dead didn’t help either. I just want to be strong enough to be supportive in the right way and at the right time - I’m just really scared if the first treatment doesn’t have results that she feels to be significant enough, and later if and when (OK, I know, when :() it recurs.
All the best to you too and who knows? Maybe the extra 16 bn President Obama is putting into cancer research this year alone might make something happen.
I noticed that no one has yet directed you to BCC’s publication ‘In it together’ a publication aimed at carers of those with BC. I have put the link for you below and hope it helps. Do contact the helpline if you need a good ‘listening ear’, the staff are here to support you as well as those with a diagnosis of BC. Calls to the helpline are free, 0808 800 6000. For those outside the UK there is another number (+44) 2076 200 077, lines open Mon-Fri 9am-5pm and Sat 9am-2pm (UK time).