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Oh gosh that makes me well up. Thank you for your understanding and sharing so openly about your own experiences.
My friends feel that Jim is being utterly selfish. But that judgement doesn’t really help. He was always a bit of a loner but it’s full withdrawal now. I feel a huge amount of compassion for him but recently anger too - which I try not to show. 

i broke down in the GP’s surgery about 8 months ago and asked for help for him. The result has been deafening silence. So you are right - the carers are not listened to. 
I do have the choice of returning to Maggies Centre and I may do that.

Thanks again

Jenny x

Hello Jenny

i don’t think the lack of support is due to lack of care but do think it is due to either or both of a lack of resources or a lack of recognition of the impact on us wives/ partners.

my husband, too, is a ‘loner’. This is why I joined this forum! I needed to talk and needed support. He shut up like a clam! I have never felt so lonely as I did at that point! It was people here that propped me up!

like you, I was worrying about and trying to support my husband but was scared silly when he suddenly announced that he was not going ahead with treatment I hit the roof. It was what we both needed but I am not saying this would work for every relationship! ! For us it cleared the air and the way for us to move forward - for others it might spell divorce!?

The real fault here is the complete lack of resources for adequate support and understanding of our needs. 

I hope that things improve for you and your husband can get out of the prison he has created for himself and - to some extent - for you.

<hugs>

Hello Jenny (Jenny28) 

I am so sorry to read of your situation - from a personal (man's) point of view i can understand how easy it is to develop a mindset like Jim's. It's so easy to think along the lines of you are the breadwinner and head of the household and because of your health issues you have become a failure and don't want to share your problems. I see it more than you realise, sadly it's a common issue.

The medical profession don't want to know either and try and pass the problem on - I have been married to a registered mental health nurse for over 45 years and we regularly talk about the failings of the NHS in this area - however, here's a few ideas for you.

* Our Support line on 0808 808 00 00 (8am to 8pm 7 days a week) will be able to offer you help and advice - do please give them a call.

* As Steve (mstev2) said above there's MIND 0n 0300 123 3393 or www.mind.org.uk who can offer he;p and advice for mental health issues.

* There's CALM (Campaign Against Living Miserably) 0n 0800 58 58 58 or www.thecalmzone.net.

* You can speak to a counsellor. BACP is the British Association for Counselling where you can find accredited counsellors 01455 883300, e-mail bcap@bacap.co.uk or www.bacp.co.uk.

There's also "Maggie's" which you are aware of.

I have offered to chat to some Community members one to one off line and this has worked once - if you think it's worth a go I am happy to help with this.

We as a group are here for both of you - please do come back to me if I can do anything else for you.

Best wishes - Brian.

What an amazing set of posts from a group of such supportive partners.  We have always said that PCa is a couples illness but these posts have blown me away.  I guess blokes react in different ways from acceptance to denial and many stages in between, but for some of you the task you face over and above the cancer is mammoth and I am in awe of you.  
Lovely to see AH again ️.

Hi Jenny28, your situation reminds me of the difficult time my partner and I had when he was diagnosed with advanced prostate cancer in February. He was/is so private that didn't want to share  anything with anyone for the first 3 months which was extremely hard for me because he was so upset and  crying. i got counselling via macmillan which I found helpful in those early days especially as I couldn't share anything with my/our friends and family so to respect his wish. I managed to get him to attend a prostate support group Tackle and they also welcome wife/partners there too. It's a difficult journey but one that we have to walk together...Sending love.x

Hello Jenny.

I can understand your frustration and fears as it is similar to my own experience with my husband so don't feel alone or that it is something just you are experiencing. Like Worriedwife I will share a little bit of our history. My husband totally withdrew into himself and refused to leave the house for two years following a stroke which then made him very depressed to the point of a complete breakdown and developing PTSD as a result of his services history. I had to push the GP to get him the help he needed which in his case was a referral to a psychiatrist and psychologist plus he was prescribed antidepressants for life. I know this is a bit extreme but when he was diagnosed with cancer the depression worsened and we adjusted the medication as and when needed in order to keep him stable. One thing I learnt was that depression is like any physical illness - he couldn't help it and needed help. For me it was a steep learning curve, firstly how to deal with a loved one who was depressed and secondly how to deal with a diagnosis of advanced metastatic cancer. To be honest there was limited help for me so my strategy was to learn as much about the illnesses as I could in order to understand what hubby was going through and what his options were so that I could have informed discussions with the experts. In the UK you have access to places like Maggie's and other organisations who may be able to help you so I would use them if you can for the sake of your own mental health.

Being a carer can be isolating so it is important that you maintain your own support network of friends and family as you will need them when the inevitable happens. If necessary you may need to 'educate' them so that they can interact appropriately with Jim and maybe help him to learn to live with his diagnosis. I had to be honest with my husband that I, like him, was also initially struggling with his cancer diagnosis and we also had strong words before we made a pact to be honest with each other and allow us to deal with the fears and get our house in order together. This brought us closer together than ever. It was stressed how important it was to have a positive attitude as this helps the body fight the illness and prolongs life but this depends on having the right mental health. Literally the day before Peter died we were discussing our next targets of Christmas and then our 29th wedding anniversary in April whilst remembering that at one stage he didn't think we would celebrate our 25th.

When we lived in the UK I found that I had to be politely assertive with an unsympathetic GP who at one stage called me an interfering wife but after putting my concerns and his attitude in writing I got the appropriate apology and treatment for my husband. In your situation I would go back to the doctor and explain that both you and Jim want to have a good quality of life for as long as he has left but this is being jepardized by Jim's current state of mind so what help is the doctor going to give you.

I really hope you get the help you need. Stay strong and keep fighting.

 Jenny28 I think Worriedwife is spot on! 

Worriedwife said:

I do hope that you and your husband can find the strength and support and guidance that you both need so that you can begin to enjoy your lives together again. In the meantime, there are , I’m sure, many people here on this forum who will be happy to support you from afar.

I know I have found counselling a great help.  If you had asked me (B.C.-Before cancer) I would have said no to counselling, but being able to talk to a professional really 'lightens the load'. 

I'm going through counselling again now, it's the part of the week I really look forward to.  

With everything going on, I find it really hard to mix with others I don't know.  But hopefully... there could be a light at the end of the tunnel.

Sorry Brian Millibob I pinched your B.C. saying).  You've got a few people using it now! 

Jenny, Maggie's do good 'support groups'.  Ask about them next time you are in. 

Thank you so much Brian for your kindness, for all the links above and for your personal offer. I will try one or two numbers and see how I get on. I didn't know about CALM - but I like the name! I recognise that, despite the brevity of life (as it so often seems) there is so much still that the years ahead offer if we would just have the courage to view it as a gift and try a little to live life to the full.

Thank you everyone for all your replies - which are so kind and so helpful. Thank you. I had lost my way a little and created an over-busy life outside the house, not having to think about things inside too much. But a recent family bereavement, which brought into sharp relief how little support I have from my remaining family members, caused me to start to feel sorry for myself and struggling with anyone who didn't seem to have a scooby that this 'journey to the cancer pole' might be hard for me too.  It's reassuring for me to see how much this is familiar territory for others. Sometimes I feel as though I'm the only one. I know in my head this is patently untrue but the bruised heart battles for centre ground and sometimes wins. Hugs and love to you all