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Getting our heads around this- positive stories needed please

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User

Posted 23 Nov 2018 at 14:58

Husband has been diagnosed with T3a G6, RP is booked for 10/12.

these past few days have been really hard, I think things are starting to sink in and we can’t believe we’re here!

My hubby isn’t really reading anything off this site, which is a s as I think it would help him and ease his fear and anxiety a little bit. It’s so hard not to let your mind run away with you at this very worrying time.

can anyone give us some positive stories of how they’ve got through this , and are now living a normal life again.

I imagine lots of people that have been cured, probably don’t visit these sites anymore, but please if you’ve got a positive story please share it.

Thank you

User

Posted 23 Nov 2018 at 17:31

we are 8 years on from where you and your oh are at the moment. My oh had ht then 33 radiotherapy sessions and intermittent hormone therapy for a few years. During the rest periods life was normal and we carried on doing everything as before. He has had a couple of complications as a result of the radiotherapy perhaps and is now on a combination of drugs to control things. He is 71 now and we are as close as ever but have learned to live without certain aspects of our life which saddened us but we still enjoy everything else including travel, good food and long walks etc.I am the one who asks questions and does the research and he happily trusts our super hospital team. He has monthly check ups but we fit everything else around them - the new normal.

It is normal to be concerned and worry about ed but it doesn't happen to everyone and if you love someone you adapt to that loss like everything else.

We frequently wish this horrible thing hadn't happened but then reflect on all the great times we have had through out life and the new experiences we are still having which make us happy.

I hope all goes well for you and that you keep talking and hugging - amazing what a little hand hold can do when you feel a bit down.

Wishing you both all the best.

User

Posted 23 Nov 2018 at 17:14

Thanks for your reply Chris. I’ve just read your story and although it could be better it sounds like you are dealing with it very well. Long may it continue.

My hubby is 63, very active, healthy and full of life. I agree I think he was in denial, but I think he’s coming out of it now. He is abso dreading the ED, saying things like he won’t be the man he was! And also the fear of incontinence is terrifying for him. I just want something positive to show him, and say look some people are cured.

I wish you all the best Chris, sounds like you had a raw deal at a young age. Your story does encourage me though to know that perhaps hubbys manhood will be restored, and that your still having life with this sh*t disease.

Thank you x

User

Posted 23 Nov 2018 at 18:21

Hi,

I think you've already read my profile....so you can see where I am regarding PCa some 4 1/2 years since treatment....

I still suffer with stress incontinence ( yes... I did all my PFE's lol! ) I also suffer with ED as a direct side effect of the surgery... ( 50% nerve sparing )

Both of these side effects are manageable for me and have become part of my new 'normal'....

What my profile doesn't tell you is that during all this my partner of over 30 years was diagnosed with terminal renal carcinoma ... so a double whammy for me and her..
She sadly passed away almost 2 years ago ( 23rd Dec 2016 )

With virtually no family around for support I can't pretend it's been easy...

Since then I've been fortunate enough to meet another lady and our relationship is flourishing ( in all departments I'm pleased to say )
Will we live happily ever after?.... Who knows! ....

Life has changed for me ...and I've had to move on .. I'm fit and active and doing all the things I used to do before I was diagnosed.. ( including enjoying a few beers lol )

OK ....so this is not a story of how life continued after treatment with no side effects....but I'm currently cancer free... and I'm not moaning..

There are a lot of members on here who are in a far worse place than I am.....so I'm very grateful to be still enjoying life with no medication ( apart from Caverject or invicorp when in the mood )
I'm not sure if this could be regarded as a 'positive story ' or not .... but it's pretty positive from my point of view
Best Wishes
Luther

User

Posted 24 Nov 2018 at 14:13

Thank you for your replies Gilly and Luther, it's stories like yours that keeps me positive. Just hearing you say 4+ years and 8+ years is wonderful and gives us great hope.

Luther I'm so sorry for your loss, and it's good to read you have found happiness once again. There is life after this diagnoses.

Thanks again,

Michaela

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User

Posted 23 Nov 2018 at 16:47

Hi , have you clicked my picture and read my story ?? I’m not sure what age you both are. I went through the RP route and sadly it didn’t work for me as it had already spread. But chances are that won’t happen to you. I’m 3 1/2 yrs post op and it’s had massive ups and downs tbh , but genuinely if your hubby gets to where I am now , and they get the cancer , then there is a bright future ahead. I would feel blessed how recovered I am except for the fact it’s spreading through my body somewhere.
What worries me immensely about your story is that hubby seems disinterested and not reading any info etc etc. It’s a kind of denial and can lead to awful communication problems , and believe me communication is what you need more than anything in the whole world. Hubby will wake up with a catheter for 14 days and may or may not be incontinent after removal. It seems men are luckier these days but I was incontinent for 3 months. It’s almost guaranteed hubby will become impotent immediately and it is a MASSIVE blow to a man and his self-esteem. Many men just lock themselves away and refuse to discuss it. It is paramount as a couple that you can share that loss and grief but work positively together to rebuild fun and function over time. You must seek your own recovery as it seems you get lost in the system otherwise. My wife and I at the youngish age of 49 had a great time rebuilding stuff and in fact were probably having more closeness than anyone else we knew in all ways. But it was still gut - wrenching for me and I still miss what I was awfully. But now I’m back to normal basically. Good weight , good health , good energy , enjoying life as much and more than ever , proper erection although shorter in length. However I’m not cured but could have been. Best of luck x

User

Posted 23 Nov 2018 at 17:14

Thanks for your reply Chris. I’ve just read your story and although it could be better it sounds like you are dealing with it very well. Long may it continue.

Thank you x

User

Posted 23 Nov 2018 at 17:31

It is normal to be concerned and worry about ed but it doesn't happen to everyone and if you love someone you adapt to that loss like everything else.

We frequently wish this horrible thing hadn't happened but then reflect on all the great times we have had through out life and the new experiences we are still having which make us happy.

I hope all goes well for you and that you keep talking and hugging - amazing what a little hand hold can do when you feel a bit down.

Wishing you both all the best.

User

Posted 23 Nov 2018 at 18:21

User

Posted 24 Nov 2018 at 14:13

Thank you for your replies Gilly and Luther, it's stories like yours that keeps me positive. Just hearing you say 4+ years and 8+ years is wonderful and gives us great hope.

Luther I'm so sorry for your loss, and it's good to read you have found happiness once again. There is life after this diagnoses.

Thanks again,

Michaela

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