Treatment, no ups just constant downs

I know, i hear what your saying.  My heart goes from trying to support to be outright wild. 

I am not old enough for this life, and this had left me in a very very dark place, but clearly the health teams dont care about that.  Or me, or my marriage, or my self esteem, or the outcome of this.  Whilst he gets his treatment, and has that to take up his mind, i have the future to consider, like loosing the house because we cant pay, or how to deal with the symptoms, or how i am going to cope driving him into Edinburgh every day for nearly two months when i am almost fully acrophobic and suffer enough to make driving a problem.  What is it going to be?  Hes already got a life changing condition that is destined to change my status from wife to carer before he retires  Now this.  And then what, 5 years later, another cancer? 

Like, what the point....

If your husband is anything like mine, unless I am in the room with him I don't get the full story and this leaves me with a lot of anxiety. Regarding his prostate journey he played down the results of his PSA  test telling me that our GP  said it was just an enlarged gland  but he was referring him for an MRI. As soon as he told me this I knew that there was more to it and subsequently found out that he'd also been referred to urology for suspected urological cancer.

When I married him 50 years next March we both made a commitment to each other that it was for better or worse, in sickness and health and we have each played the role of carer and patient numerous times.

There have been times when in a strop he's said 'your not my mother' and I've told him not to act like a child then.

I now go to every appointment with him, and make sure that I am there when he has telephone calls about his PC as 2 sets of ears are better than one pair of selective hearing ears.

Sometimes we have to take on the mothering role and dish out some tough love. Obviously I don't know your husband so I don't know how he would react, but I would be telling him that you are going in with him for future appointments as you are his wife and whatever hurts him, hurts you. It worked for me.

If it doesn't work, put your wife's hat back on, whatever your definition of being a wife is.

He wont though, like i say he thanks them for this.  Hes prepared to go along with this, without challenging even though its basically finishing off our marriage.  So my point is, how can he just keep saying yes sir, thank you sir, without trying to fight, even to give me some hope. 

Story of our life, he is passive, and has left me to deal with things that i shouldnt have had too over our nearly 30 years, but he was happy to allow me to stand in front of him and basically block everything.

OMG i am soooo broken. 

I cant go to these appointments.  I know what you mean though. 

Hes passive, like i say, and by leaving him to deal with this alone, he gets the chance to "run" the show, then i am not responsible for the outcome.  He is in control, i needed to give him that and not run rough over the whole game, because i will, and you can see it in this thread. I am hurting, and that make me wild, its not nice, its aggresive and i know it.   But your right, by not being there i dont get the whole story.  I cant bite back. 

Its been hard, i just wanted to be his wife all alone, but i have always been the mother.  It was something we were trying to deal with pre this.  I had to get up after a bump and never stop.  Whilst he takes everything literally, and he certainly is not robust.

Are you sure you are getting the whole story. I've met some nurses/doctors with terrible attitude to treatment within the NHS, they think they are God, but they are a minority. I struggle to accept any health professional saying do as I say or you'll die.

You need to find out why he's on tabs and implants. I'm not sure it would make a difference to be honest, once the levels are zero, they don't go down further. I've had all those symptoms he has, still have got them, but although I'm still on HT, they do seem to be not so badly affecting me. Perhaps I'm getting used to it and finding coping mechanisms. So there is hope. And 1 year later my wish for intimacy is returning......early days but again, its a good sign. So don't lose hope entirely. Insist on attending with him, whilst ive had zero support from "the system", and nothing from Mc M, (it seems they get embarrassed more than me talking about sexual matters), you can get through it with information and knowledge about what and why. If they don't like telling you so be it, they don't have to like it, they just have to provide care.

I hope I'm not speaking out of turn, but is it possible that he is not being entirely honest with you because, as you have said this is 'basically finishing off your marriage'.

Some couples become stronger when faced with life changes, but others can't cope and cracks that already existed get wider.

He is probably terrified that he is not only going to due, but die alone.

If you are there, you will hear first hand the reason for his treatment plan so you can calmly ask questions. There's no need to bite back at people who are responsible for saving his life. 

Quite possibly you need some counselling to help you get through this.

In England and Wales there some support groups for sufferers and their families and I saw a post on Mcmillan the other day for one in Glasgow  so there may well be one in Edinburgh.

Sorry to be so blunt.

Full story is the point i think.

I just got of the phone to him, ok i just stopped shouting at him.  Turns out they are telling him that he needs all these hormones, all that radiotherapy and boost etc because hes considered "high risk".

The extra boost and hormones are because they want to blast everything. Just incase its slipped through the treatment and gone else where.

So my question was this.  How can this stop any future cancer, when it clearly a DNA issue, and that the radiotherapy is a treatment to remove what exists.  Not what might be.  If he is such a high risk, how can they say now when its taken 10 years to grow this far, and still its ratained in the prostate.  And finally if hes such high risk why is it a year from diagnosis to radiotherapy. 

Its just not making any sense. 

I dont think you need to apologise, i know what your saying.

I think your right.  Some days we feel closer, and see our relationship changing for the best.  But then other days it just falls into a big heap of pain.

He is scared, i am scared.  Neither of use want to die alone, but neither off us have anyting outside of this unit.  In any case he wouldnt be alone.  Our kids adore him, and will (and likely have started) to turn on me for being selfish, uncaring and all other things that the wife is not meant to exhibit.  So he would have them, i would be left with nothing.

I cant cope with the idea of counselling, i fear much more hurt than there is at the moment.

Its out of control.  The worst thing is the constanly shifting goal posts, and now the anxiety of the future.

I think you need to know all his stats. Gleason 8 can be 3+5, 4+4 or 5+3 each showing different likelihoods of the growth rate.Gleason 8 is Grade group 4 which shows how aggressive the cancer is likely to be. Then you need to know his T stage, which  shows how far the cancer has spread, his N stage which will show if it's spread to his lymph nodes and  his M stage which will show if it's spread to other parts of the body such as the bones.

We were given all this information on diagnosis, along with the treatment options available and we've been copied into letter's sent to the GP with these stats.

You can get a booklet from prostate cancer UK called 'Prostate cancer A guide for men who've just been diagnosed. This given to us at his diagnosis appointment with the relevant stats ticked. This was a great help in understanding and helping to choose his treatment.

On diagnosis he was grade 3 gleason score 7 (4+3).

In order to get approval for the hormone tablet they (without review ie no additional scans ) to 8.  

It's not metastatic, it's all retained.