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User
Posted 30 November 2015 23:17:53(UTC)

It's been a while since I regularly posted, so it seemed a good opportunity to explain what's been happening.

To be honest, in the last 2 months, when I sit down in the evening, I am totally exhaused.  Running around after mum with her various clinics, her repetitive phone calls due to her almost non existant short term memory, as well as dealing with Social Services, her carers and checking up on her tablets and her personal hygiene, many issues of which have not been sorted satisfactorily, as well as her financial affairs, is taking its toll.  (For those new to the forum, my father died of PCa in September).

For myself,  I am resigned to needing pads for life, but this is not a big issue for me.  I am close to being dry several times a week, but I have bad days too.  Back in September, we had a weekend away where I was on my feet all day, and was leaking significantly.  Fortunately, days like that are rare events.

I have still not been able to have intercourse since the eve of going to hospital for my op.  The best place for any reaction is the shower.  Sildenafil helps, but it's still not enough.  I exercise with the pump regularly without the ring attached, but can't manage the same result at the moment. Here's hoping things improve.

With all this, I have not played as much golf as I would have liked and form has dropped slightly.  However, it's even harder for my OH who retired last April and has not really been able to enjoy her retirement.  Her mum is 93 and has been brilliant on her own, but her health seems to be in decline too.  It would seem the next few years could be difficult as we try to manage our home and look after our mothers, virtually on our own.

I will make every effort to use the forum regularly again, but if I have spells of absence, I hope you'll understand why.

 

Paul

 

 

Stay Calm And Carry On.
User
Posted 04 December 2015 07:49:01(UTC)

Mr Sf2,

its hardly surprising that you feel tired, having to deal with aged and ill parents is no easy task,  I speak from experience 

I had my RP in May 2014, my 86 year old father in law at this time was in and out of hospital and eventually admitted into a care home at the cost of £900 + per week, he needed care 24/7, dealing with social services in particular a women who could hardly speak English except for telling us he has to sell his house to pay for care was infuriatingly challenging, yes I'm being kind here !

there is never a right time I guess, it was a really difficult period, but that's now history,  I had reached a stage where I thought Id be incontinent for life, its been a painfully(timewise) slow progress,

I've read other posts here about people who stop leaking after a few weeks and gain full sexual function and think I'm one of the unlucky ones, but to be honest It maybe be a slow recovery but its getting better, so hang on in there it maybe a case of its not over yet !

 

                                                                        Good Luck

 

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User
Posted 01 December 2015 00:03:40(UTC)

Sf2, I am so sad for you both - it isn't easy to deal with the needs of aging parents, particularly if they are no longer independent. It is important to try to keep some time for yourself - what did you go through all that treatment for if not to enjoy life :-( If it is any consolation, your mum may soon get to the next stage where she forgets how to use the phone - a friend of ours told us at the weekend that his mother's bill has gone down from over £100 per month to almost nothing because she has forgotten how to do it. Sad but a relief at the same time.

Take care of yourself, my friend

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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User
Posted 01 December 2015 07:29:09(UTC)

Best wishes Paul with the hard times ahead. You've had it really tough this last year. I'd like to thank you for the help you have given me. Keep strong
Chris




If life gives you lemons , then make lemonade
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User
Posted 01 December 2015 00:03:40(UTC)

Sf2, I am so sad for you both - it isn't easy to deal with the needs of aging parents, particularly if they are no longer independent. It is important to try to keep some time for yourself - what did you go through all that treatment for if not to enjoy life :-( If it is any consolation, your mum may soon get to the next stage where she forgets how to use the phone - a friend of ours told us at the weekend that his mother's bill has gone down from over £100 per month to almost nothing because she has forgotten how to do it. Sad but a relief at the same time.

Take care of yourself, my friend

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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User
Posted 01 December 2015 07:29:09(UTC)

Best wishes Paul with the hard times ahead. You've had it really tough this last year. I'd like to thank you for the help you have given me. Keep strong
Chris




If life gives you lemons , then make lemonade
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User
Posted 01 December 2015 09:07:40(UTC)
Thank you for open and honest post.

Wishing you all the best.
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User
Posted 01 December 2015 09:09:49(UTC)

Very best wishes, Paul. I empathise with the comments about retirement as I had only just retired when Neil was diagnosed. Feels like life rarely gives a period of uninterrupted calm, it is such hard going sometimes. Keep updating us when you can,

 

Regards, Fiona.

 

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User
Posted 01 December 2015 09:15:46(UTC)

Ah Paul, I really feel for you.

My mother in law, a lovely lady who thought the world of me, became very clingy and demanding after father in law died and hated the thought that we would go on holiday (camping, all we could afford so no chance she could/would come).
We were expected every weekend too and she didn't have the additional problem of Alzhiemers. John was working full time then and we had youngish children so life was difficult

What can any of us say to you except, hang in there.

Of course we understand that you won't always be able/want to be on here but I for one will always welcome the sight of your avatar showing you're around again.

As Chris says,it's been a tough old year. You do need (somehow) to make a bit of relaxing time for the pair of you. I expect you've already investigated day respite care just to give you both the occasional break?

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
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User
Posted 01 December 2015 11:25:13(UTC)

Hi Paul,

I can relate to parts of your present situation well.... My dad died at 55 years old from metastasised PCa

Until a few years ago I was having to manage my mums Alzheimer's  in a similar way that you describe...... with very little help or understanding from doctors or social care...  In short it was a nightmare!

Eventually mum deteriorated to an extent that we were able to demonstrate to the authorities that she was a danger to herself and other neighbours.
She is now in full time care at a specialist unit and we are more relaxed in the knowledge that at least she is safe.....

It's very difficult watching a lady that was so capable and independent deteriorate over the years.
 
She now no longer knows us and sleeps for long periods, but at least she is now getting the care that she needs.
Life for me is less stressful now knowing that she is safe and being looked after.

Like you, I've pretty much resigned myself to the fact that I will be using pads for the rest of my days also.... although I still live in hope!

There are times when I get a little despondent about this, but it is manageable and I lead a pretty normal life. If I'm lucky enough not to have a biochemical re-occurrence at any time in the future I will be grateful.

This will no doubt be a tough time for you and your family, but try to make some time for yourself and your wife.
Best Wishes
Luther

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User
Posted 01 December 2015 11:27:39(UTC)

Very best wishes Six feet two .

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User
Posted 01 December 2015 15:14:32(UTC)

Hi Paul,

I totally understand how you feel. 

You've had a difficult time this year, and it's taking it's toll on you.  Life has changed and may never be the same.  You are finding that there is so much going on that you are not able to do the things you really want to do.  I'm not surprised you feel so tired, physically and emotionally.

If would be really good for you if there was anyway you could get away for a holiday with your wife, just to "recharge your batteries".  I think that would work wonders.

Pleased know we are always here for you on this site.

You have always been so helpful to me, I only wish there was some way I could help you.

Stay strong.

Steve

 

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User
Posted 01 December 2015 16:10:20(UTC)
Paul my friend
How my heart goes out to you.
This disease is hard enough but with the year you are having then it becomes a serious burden.
The leaking may get better over time, as for the sexual functionality it seems to be so hit and miss. You are one of many men right here and right now who have such problems.

More than ever there seems to be a need for a get together a kind of mini conference with an ED specialist, maybe a urologist so that all the Men and maybe their partners can get together and chat openly amongst clinical specialists about post surgery, RT, HT etc. Issues. I know PCUK were trying to set up a Web chat but I really believe a one day seminar might get support.

In amongst looking after your Mum, you simply must make time for you and also for your wife to relax and unwind. As Lyn says you have come through a huge medical issue all of your own. Now should be your time to live and enjoy living too.

I think of you often
Xxx
Mo

.
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User
Posted 01 December 2015 23:19:30(UTC)

Thanks for all your lovely comments.

My OH is reluctant to go anywhere at the moment due to her own mother's health as much as my own mum, which I can understand as she is an only child.

We are fortunate in many ways, and I must count my blessings. We have always known we would have a time like this in our lives. On top of our mums, I also have a maiden aunt who lives 80 miles away, and although she has a great support network of friends, I am her next of kin.

We still manage to go out to concerts and the theatre, and probably spend as much on this in a year as some would on a holiday, so we do get our relaxation together. (I must mention a former member of my school football team won the Emerging Talent Award at the Evening Standard Theatre Awards last week and we will be seeing him in action at the Royal Exchange in Manchester in Christmas week. Oh, and another pupil was fighting for a world championship last week in Germany, although he lost again unfortunately).

So it's certainly not all doom and gloom, but nevertheless mentally tiring.

Paul

Stay Calm And Carry On.
User
Posted 02 December 2015 00:14:19(UTC)
Oh Paul
My heart goes out to you older members might remember that I looked after Mum and Eric its hard work after Eric passed away she was taken into hospital then placed in a home as I didn't have POA I had a 4month fight to get her back home .
So I do know how you feel
Sending you my best wishes and hope you manage to have some down time.
Carol x
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User
Posted 02 December 2015 13:24:37(UTC)

SF2

Sorry to hear of your family problems.  Our ops were within days of each other although our stories since then have been quite different, have you tried muse or caverjet etc, I have had some good results with Muse ( did not fancy the injections).

Hope things start to get better on all fronts.

 Thanks Chris

User
Posted 04 December 2015 07:49:01(UTC)

Mr Sf2,

its hardly surprising that you feel tired, having to deal with aged and ill parents is no easy task,  I speak from experience 

I had my RP in May 2014, my 86 year old father in law at this time was in and out of hospital and eventually admitted into a care home at the cost of £900 + per week, he needed care 24/7, dealing with social services in particular a women who could hardly speak English except for telling us he has to sell his house to pay for care was infuriatingly challenging, yes I'm being kind here !

there is never a right time I guess, it was a really difficult period, but that's now history,  I had reached a stage where I thought Id be incontinent for life, its been a painfully(timewise) slow progress,

I've read other posts here about people who stop leaking after a few weeks and gain full sexual function and think I'm one of the unlucky ones, but to be honest It maybe be a slow recovery but its getting better, so hang on in there it maybe a case of its not over yet !

 

                                                                        Good Luck

 

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User
Posted 04 December 2015 17:31:45(UTC)

It's really important and essential, in my view, that we cater for our own needs and wants too, particularly when we are caring for and supporting others on a regular basis. We often overlook that to our detriment, unfortunately!
Your care and compassion for others is to be applauded despite your own personal issues.

My best wishes, Paul.

Jacey

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User
Posted 04 December 2015 20:34:00(UTC)
Thanks for the update sf2, like many of us here, I had elderly parents and parents in law to care for plus our mums both has dementia, we lost our dads within a week of each other then one mum within a further 6 months. My poor mum lingered a further 8 years with good care, not a fate I wish for myself if I'm honest. If I'm totally honest rash passing was a relief all round, it sounds uncaring but we couldn't have loved them more. It is a very tricky time in your life, especially with your annus horriblis (I won't mention what the iPad wanted to do with that expression!). We can only hope that the continence improves over time and of course, the other aspects you mention which I'd almost forgotten about after living through 5 years of metastatic disease!

Please keep us updated, I think I speak for many here when I say that you have earned a special place in our heart.

Much love
Allison
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User
Posted 09 December 2015 22:25:06(UTC)
I was thinking of you the other day.

My mother in law has onset dementia, and is rapidly going downhill. It's very hard work.
Keep smiling
Thinking of you x

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User
Posted 10 December 2015 12:10:12(UTC)

What a tough you've had Paul. Like the others I really feel for you. I had similar issues with my Mum and know how tough it can be.However I was lucky in as much I didn't have to also deal with my own prostate problems at the time as I was unaware of them, so I can only imagine what it's been like for you and your wife.

I wish you both all the best and sincerely hope that life becomes a little easier for you very soon,

and Thank You for the support you've given me

Cobbles

User
Posted 09 April 2016 22:15:42(UTC)

Tomorrow marks the 2nd anniversary of my saying goodbye to my prostate, and what a fortunate fellow I am. I know it's said that the side effects don't normally get any better thereafter.

Leaks are still minimal but pads are needed. Fortunately, I am one of the lucky ones who gets free supplies on the NHS. I still do my PFEs every day, so you never know.

The other - well let's say it's not so good at the moment. Sildenafil wasn't working, so I've just been given a new tablet. Unfortunately, I have not tried it yet as my wonderful mother-in-law (she'd have been 94 at the end of the month) passed away suddenly last Monday. There will be much work for my OH and I in the coming months.

Mum was also diagnosed last month with vascular dementia - she doesn't want to do anything and is constantly on the phone. She hates being on her own, but after refusing day centres, will be starting on Wednesday.

Despite all this, the alternative is far worse. Hopefully things will settle down and we will be able to start enjoying our retirements. As you can probably, tell, life has been fraught since last August in the lead up to dad dying of PCa, hence my absence from this board. Still feeling a lucky, lucky man though!

Paul

Stay Calm And Carry On.
User
Posted 09 April 2016 22:28:32(UTC)
SF2

Good to hear from you again, I am three weeks behind you and we both seem to be at the same stage of recovery. Not given up hope of a fuller recovery but at least still here to moan about it. As you say fortunate to be here and alot better off than many.

Sorry to hear of your loss and your mum.

Thanks Chris
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User
Posted 10 April 2016 06:24:12(UTC)

Hi sixfootwo, sorry to hear that you have lost mum in law and your mums bad diagnosis, life is not easy for you especially with your situation. You sound very positive and I am sure that will get you through.

My thoughts are with you and your wife

Regards Chris/Woody

Life seems different upside down, take another viewpoint

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User
Posted 10 April 2016 06:48:05(UTC)

Hello Paul
I've oft thought of you and you've been missed. I'm sorry life's challenges haven't eased up on you both yet but I'm sure in time they will. But as for the PCa yes you've been lucky. At least that's gone. Nice to hear from you
Chris




If life gives you lemons , then make lemonade
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User
Posted 10 April 2016 08:18:18(UTC)
Hi Paul,

Just wanted to say it's nice to hear from you again even though you're having a difficult time.

As you know, this is a good place to find support for any problems in your life and many (including myself) are always here to listen even if it's not connected to PCa.

You have always helped members her, even with posting about your own experiences. You give people hope.

I hope everything improves for you soon.

Take care.

Steve
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User
Posted 10 April 2016 10:10:13(UTC)
Hi Paul 6Ft2

I hadn't quite got to the sending out a search party stage, but I have been thinking of you. It has been a traumatic year for you, losing your Dad, then your Mother in Law and now your own Mum diagnosed as you had suspected. Thank goodness you are doing reasonably well, OK not yet fully recovered but not given up hope of regaining both full continence and assisted EF.

Now that you are both retired I do hope you can start getting so much more time to do the things you both want to. I know golf will be right up there for you, but lots of other activities to be enjoyed too.

I wish you all the very best
xx
Mo
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User
Posted 10 April 2016 15:07:49(UTC)

Sorry to hear of your loss Paul and the difficult times with your Mum.

The second anniversary of your operation is something to be pleased about and I'm glad that health-wise things are going pretty well for you. 

 I hope it isn't too long before you and your wife can enjoy that retirement.

All the very best

Cobbles

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