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Facebook group for partners

User
Posted 04 Apr 2021 at 17:00

Hi all I’m sure that this information is somewhere on the site but I haven’t been able to track it down...i am struggling with the difference between my way of coping and my husband’s way of coping with his diagnosis and in particular with his prognosis. He has had radiotherapy and HT and has just ended HT. I am aware that I am probably too much on the side of optimism and only dealing with what is happening now (perhaps because that’s my coping strategy but also I’m busier with work, the house and kids) whereas my husband seems to be missing today by focussing on how it will be tomorrow. I’m not being supportive I know and we find it hard to talk about it from our differing ‘positions’. Would welcome any thoughts but also if anyone could point me to the Facebook page for partners as it might be helpful to shake me out of my own way of coping. Many thanks & hope everyone is managing in one way or another 

User
Posted 05 Apr 2021 at 00:11

Hi carolinaaa,

I see from your post a couple of years ago that his PSA was 500, and HT RT was the treatment plan. Why is he coming off HT? was the original plan to stop it after two years or was the original plan to keep him on it until it stopped working. Has it stopped working?

If he is curable then looking to the future in a positive way makes sense.

If he is incurable, then enjoying the present is a better idea. 

Dave

User
Posted 05 Apr 2021 at 08:19
Hi, The Facebook group you are looking for is UK Women affected by Prostate Cancer. you have to answer a couple of questions to join, it is a friendly and helpful group.

regards Barbara

User
Posted 05 Apr 2021 at 10:50

Thanks both.

I'll look up the group.

His HT has ended as I understand it because he's been on it for 24 months and they said there was no benefit beyond that at this stage. He ended up going on standard HT along with abiraterone. As far as I know we now just wait and see whether and when his PSA level creeps up. The oncologist did say he hoped that the RT would be "curative in intent" but there is no way of knowing whether that was the case or not.

The difference in coping is that he is quite focussed on what it will be like later in terms of health function and for example regularly says he's won't be here for x or y (as he'll have passed away or be too ill) or he'll plan something for the downstairs room as that'll be his bedroom in the future if he is too ill and so on, whereas I tend to think he is relatively well now and we should focus on being the best family we can be now, building memories if you like and it might be years and years before his health is at issue again. I don't know whether I'm being unsympathetic and too positive, not allowing him to process and grieve for the lost future, or he is losing today whilst he worries and future-experiences how difficult it might be.

I know we both have to deal with things in our own way but also together but it is hard, as he is for example cross I think that normal family life, hectic and up and down, is continuing when he feels his life is foreshortened and we should be more focussed on him. Covid hasn't helped in terms of not being able to travel or do some of the things he wants and we've had a bit of a difficult time with needing to focus on the kids for one thing and another and maybe he feels forgotten in all that.

Apologies for long reply. I would appreciate what you think about whether that is more about curative or incurable, future or present, and thanks for the facebook info.

User
Posted 06 Apr 2021 at 00:02

Well I like you am an optimist. He has been treated with curative intent. None of us know if we are cured, but there is no point in assuming we aren't. I do have to accept that his starting with a psa of 500 is not good, and abiterone suggests the oncologists have decided to chuck everything at his cancer in the hope of knocking it out, they wouldn't have done that if it was just a pussy cat.

However as of today there is no reason for him to think or behave as if he has not been cured.

It has been commented on here before that end of treatment is a bit of a disappointment, you are no longer the centre of attention, your just a normal person.

The HT can take about a year to recover from, so fatigue, hot flushes or any other side effects, may warrant some sympathy. Also it is possible he is depressed, people are very reluctant to get treated for depression. One of my friends said if you ever get depression don't try and struggle through. Get help.

So I don't think you need to change your attitude. Any future problems need to be dealt with in the future not now. 

Dave

 
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