Chris J's Journey

User

Posted 15 Jun 2015 at 06:42

Thanks to all. Here we go now. Speak soon x
Chris

User

Posted 15 Jun 2015 at 07:43

Best of luck, Chris - positive thoughts!

Paul

Stay Calm And Carry On.

User

Posted 15 Jun 2015 at 09:35

Won't cross my fingers, you won't need me to.
You do what you have to do Chris and when it's over you start to rebuild your new life, in whatever form that takes.

El and the little one will be there as well as your friends and family.
AND your online family too of course.

All the best for today and the rest of you life!!!
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 15 Jun 2015 at 09:49

Good luck Chris, glad you made the right decision . The fear of the unknown is always worse than the reality. Best wishes for today .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 15 Jun 2015 at 21:48

Hi Chris,

When you get to read this you will be awake and your new life will have begun, and it really is not bad, honestly!

And at least one major worry will be gone.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 16 Jun 2015 at 16:24

16/06/15

Hi guys yes I've had my radical prostectomy and lymph node removal and some bladder work. Apparently all went as planned with nerve bundle sparing.

No pain in "that" area and catheter ok , but chronic pain in lower abdomen due to the 5 holes thru my muscle and gas in my belly. In for a second night as lumber still draining a lot.

I know u say never look back but I'm slightly annoyed / worried. My surgeon said they could neither see nor feel the Gleason 8 aggressive cancer when they got my prostate out despite this being the main panic , and surprise surprise I haven't seen him since. Just his registrar. She candidly pointed out " you've got cancer and it's better out so u can see ure grandkids" , blatantly not knowing much about me or this journey. When asked why Oncology was withdrawn she didn't know. I just PRAY I needed this doing 😢.

Anyway too late now. I'll keep in touch x

Chris

Edited by member 16 Jun 2015 at 21:32 | Reason: Not specified

User

Posted 16 Jun 2015 at 16:39

Hi,just because they could not feel it does not mean the cancer was not there. Your PSA was indicating it was and analysis of prostate will surely prove it. Speedy recovery,El .(no relation!!)

User

Posted 16 Jun 2015 at 16:46

Hi Chris,

Pleased everything went well. Now the prostate is out it will be examined and the full extent of the cancer will be revealled and your surgeon should feed this back to you at a later date . All they told me post op was that it looked a bit sqidgy whatever that might have meant.My pain around the wound site was quite bad for a couple of days but soon settled down and became a discomfort for a couple of weeks. Don't be afraid to ask for analgesia.

Hoping you are soon home and getting on with your recovery.

Paul

Edited by member 16 Jun 2015 at 16:47 | Reason: Not specified

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 16 Jun 2015 at 17:28

Chris,

Glad the surgery went well and just concentrate on your recovery now, they will do more test's on your prostate and let you know the outcome.

Trish

User

Posted 16 Jun 2015 at 20:17

Hi Chris,

Pleased it went well. It's done now and out of the way.

I'm sure they've done the right thing. I'm on HT and had RT, didn't get chance of RP, which is probably what I would have chosen. The RT and HT hasn't been easy for me.

Here's hoping your recovery goes really well.

Steve

User

Posted 16 Jun 2015 at 20:24

Great to hear from you Chris, job done!

I hope you're as comfortable as you can be, all the best to you and El.

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne

User

Posted 16 Jun 2015 at 20:37

Well done Chris. Pleased to see you are fit enough to be on the computer!!
All the best to both of you
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 16 Jun 2015 at 21:08

Hi Chris,

Totally understandable that you would fret at this stage, worry that it may have been a false alarm, and the surgery was unnecessary, and without having all the information. Beginning to understand you and your thought processes now, but, but, but wait until the pathology results are through and then, and only then, will you know what you were carrying.

As for regrets, well it can not be put back, so maybe you can get used to the idea and concept of your new prolonged life? Lots of things may be different, but believe me regular great sex after RRP is possible. Maybe you were only at it every day before the op? I have had to deal with a far less regular sexual active life than I was having pre-op. But I am making do, grinning and bearing it, putting up with my frugal sex life with barely a moan or a whinge,and just having to accept that I can only do it four times a day. Life is tough, but at least it is a life without cancer.

atb

dave

did I say "great"? It's not great it's ydoolb marvellous. ;-)

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 16 Jun 2015 at 21:30

Thanks so much guys. Got my smartphone in hospital bed. Hopefully sleep this second night.
Thanks Dave
Chris

User

Posted 16 Jun 2015 at 21:59

Chris

I have never talked to my surgeon since my op - only chatted to his underlings. Don't fret now - you will get the full report when you have your follow up.

I remember the most uncomfortable feeling when I woke up from the op with the gas inside you. Plenty of peppermint tea will quickly resolve it.

Having the catheter is a pain, but that will be gone probably at the end of next week. Concentrate on building up your strength, listen to and do what you are told. Only time will tell how you will heel. Post op, Ive no regrets knowing I've got so much more to look forward to. With the same disease 50 years ago, I probably would not have made 70 - now I'm hoping to reach 80 with so many more things to do with my life. You can do the same!

Paul

Stay Calm And Carry On.

User

Posted 17 Jun 2015 at 13:31

Chris

Hi there, I am home from internet exile and so happy to see that you are posting using your smartphone (hope it is an android and not one of those I Sheep things!!)

I agree with Dave, maybe a couple of us are starting to understand your thought process a bit better, only natural that you would start to worry that you had gone through all of this unnecessarily. I very much doubt that. Your PSA tests, biopsies and scans are most unlikely to have all got that much wrong.

I am no expert but I would think that there are many cases when the removed prostate looks ordinary it is what is happening inside that the human eye cannot see that truly matters. The more ordinary it looks maybe the more hope that everything has been well and truly contained giving you the best chance of a full recovery. Hopefully back to the continent and sex loving Man you were right up to the operation.

The best news is that you are alive, have risen up to (no pun intended) and met a massive challenge and for that I truly applaud you.

We are all here for you if you need to ask anything along your journey ahead.

Very best wishes to you and all your family

xxx

User

Posted 17 Jun 2015 at 23:31

Hi everyone it's Elaine here - Chris is still in hospital (a small drainage problem which will hopefully remain small) so I thought I'd hijack his post a little. Chris's journey... well what can I say... it's certainly kept me on my toes! So much energy and emotion invested these last few months, and most particularly these last few weeks. Whatever gets thrown up next, by having the RP I think Chris has been brave and done the right thing for himself, for us and for our family. I have plenty of optimism for the future - certainly enough to spare to rub off on the man himself :)

I'm so glad we were directed to this site. The comments and opinions have been diverse, honest and invaluable. As Chris has already intimated his mental health can have a significant effect on his thought processes (the words dog and bone come to mind) and the continued support and differing perspectives offered here have been more helpful than you know. So while I'm sorry for the situation that finds us all here, I'm grateful that you are x

Edited by member 17 Jun 2015 at 23:41 | Reason: Not specified

User

Posted 17 Jun 2015 at 23:53

Elaine,

Pleased all went well. Give him my Best Wishes.

Steve

User

Posted 18 Jun 2015 at 00:08

Hey El

great to see you post hello and welcome from me. I am so happy that Chris is doing well.

Chris has done so well to have got through all of this to date, without a doubt a lot of that is down to you and the wonderful support you give him.

Sometimes the things shared on here can be incredibly personal but that is all part of the comraderie. we are a very open and honest bunch not much phases any of us.

It is quite common to be in hospital for anything up to 5 days sometimes more, now it is just a question of letting the healing begin and the post operative recovery and care kick in.

Going forwards your support role will be really important and it can get quite frustrating so if you ever need to chat please hijack Chris's post again or use it to send a private message or even start your own profile. We are all here to support you too as best as we can .

Thinking of you all

best wishes

User

Posted 18 Jun 2015 at 08:09

Hi Elaine,

Thanks for the update. I can only say how valuable as a support my good lady was during my journey. She has been patient when needed but firm when she found me feeling unnecessarily maudling and a great sounding board.

Look after yourself too. Seven months on now from my diagnosis and we are now just appreciating how stressful it's all been.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 18 Jun 2015 at 08:36

Hi Elaine

Glad to hear Chris is doing so well - today is another day nearer coming home.

I don't know what I've have done without my wife's support and Chris is probably the same. We often underestimate the part our wives/partners play in this journey or how it affects them too.

Thank goodness for them

Best wishes

Arthur

User

Posted 18 Jun 2015 at 08:46

Morning Elaine and welcome from me too.
Tell Chris a big hello and well done.
Glad you found us too !
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 18 Jun 2015 at 10:22

Hello Elaine,

Please send a BIG WELL DONE to Chris from me and also to you too for all the wonderful support you've given him and will continue to do so.It's been quite a journey for you both but along with everyone else who's been following it with you, I'm so pleased that you've got to where you are and wish you both all the very best during his recovery.

Cobbles

User

Posted 18 Jun 2015 at 20:43

Hi Elaine

How great to hear from you, I hope YOU are doing ok and getting all the support and help that YOU need as well!

I hope Chris is home soon and not in too much discomfort.

All the best to you both

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne

User

Posted 20 Jun 2015 at 10:41

Originally Posted by: Online Community Member

16/06/15

Hi guys yes I've had my radical prostectomy and lymph node removal and some bladder work. Apparently all went as planned with nerve bundle sparing.

No pain in "that" area and catheter ok , but chronic pain in lower abdomen due to the 5 holes thru my muscle and gas in my belly. In for a second night as lumber still draining a lot.

Anyway too late now. I'll keep in touch x

Chris

Hi Chris,

Hope you are feeling a bit more human now. Just as an aside to this. My OH had a cancer that the urologist says he wouldn't have detected on DRE. His prostate was very normal in size and shape. Biopsy detected a gleason 7. On removal, pathology detected a Gleason 9.

In any event, there is no going back. You can't undo anything. You can only move forward. Try and focus on getting better. If it helps, my OH has just started to regain some function seven months on.

I wish you luck, and hope you are home this weekend

Louise

User

Posted 20 Jun 2015 at 11:16

Thanks Louise.
I've had a bit of a rough ride tbh and will have been in hospital 1 wk Monday. No pain down there and doing pelvic floors. Catheter no probs. but 1 of the five holes they made is lividly sore and infection spreading. Can't sit up. I had a mental wobble too which was to be expected. Yes I want to move on and know it's sensible , but I feel quite sad and low. I'm sure we will make it
Chris

User

Posted 20 Jun 2015 at 12:18

liz yelling who is an ex marathon runner, talks about when you feel rough in the later stages of a marathon (in your case its post operation) its just one step in front of the other, and keep focused on that.

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 20 Jun 2015 at 23:30

Chris

It's a tough one. My husband had robotic surgery, he spent seven hours upside down with his arms above his head. He had had severe shoulder problems for two years, and came out of surgery in absolute agony. He spent four days in hospital, and like you, it wasn't the pain from the surgery that bothered him so much. He was very down. I think it's a common feeling, but not any less painful for you because of it.

I shall be thinking of you. Try and get your OH or family to bring in some nice food for you. It helps!

Louise

User

Posted 21 Jun 2015 at 12:33

A bit late now and I am not medically qualified but I was advised NOT to do pelvic floor exercises while the the catheter was in.

Good luck with your recovery.

Thanks Chris

User

Posted 21 Jun 2015 at 21:51

Hi Chris

I have just been reading your journey, thank you for sharing it. I needed to read that the way I have and am feeling about it all.

I am only 43 and was diagnosed with PC on the 16th June 2015. LIke you I am totally terrified and everything you have been through, I am going through right now.

Your story and you have been a complete inspiration to me, Thank You Chris.

Good luck in your recovery and may you soon be 100% fit and well with everything to look forward to and enjoy again.

User

Posted 22 Jun 2015 at 08:29

There you go Chris.
Testament that everything you have been through and your struggle with treatment choice has been of benefit to somebody else so it was well worth your while posting your feelings on here.
Well done.
PS Hope today is a better day and that some of the discomfort is being controlled for you

We can't control the winds - but we can adjust our sails

User

Posted 22 Jun 2015 at 11:54

Thank you for your kind remarks both to El and myself. I mailed Raiden last nite offering any help I cud.

Just an update. Please don't reply ! Still in hospital which is one week now. Essentially all went well with the RP but they have found serious unrelated issues with my blood which has led to me being isolated and investigated.

Again don't reply - I will post when I'm out xx

Chris

User

Posted 26 Jun 2015 at 11:45

Hi everyone , I'm still in hospital and may be over the weekend Grrr. It's blood related and sudden withdrawal from all bipolar meds to get those bloods right. Can't send me home without re-planning new meds etc and desperately want me to be happy and safe.

I had my catheter removed exactly 24 hrs ago and what can I say !!! It's early days and I don't want to get too excited. I've worn one pad in 24 hrs and only dribbled into it 3 times. I drank water all day yesterday and each time my bladder felt full I simply went and wee'd like normal. I cut back intake in the evening and was genuinely worried about the normal amount that had been leaking from the catheter. However I woke at 3 am dry and went normally , and then again when I awoke this morning.

In graphic detail the urine seems to be "ready at the tip " rather than further in the body but does seem to stay there. If I was to leave it I'm sure it would dribble. And indeed I did squirt trying my pelvic floors and also once doing that disgusting thing men do -- farting haha. So it seems that if I regularly empty I'll be ok but will have stress incontinence. But hey it's DAY 1.

The registrar said she would be delighted to tell my surgeon. They didn't want to get my hopes up but he has been trying something new , and I'm apparently fifth off the line now with this success.

I know you will all say " told you so " and " why worry till it happens " etc , but the fear was overwhelming. And I've not started on the ED journey but feel more hopeful. Love to you all and wishes to everyone on their journeys

Chris xx

User

Posted 26 Jun 2015 at 12:28

Well done, Chris!

Hope everything continues to go well for you.

Steve

User

Posted 26 Jun 2015 at 15:10

Good man Chris. Early days, as you say, but all sounding good. Keep on in there pal. Small steps.

Take care.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 26 Jun 2015 at 16:20

Chris

that all sounds very positive, I know staying in Hospital is frustrating but if they have been adjusting your BP meds then as you say it is important that they send you home well and HAPPY.

What you are experiencing with urinary function is not unheard of but it is still very encouraging for you, it will be interesting to hear what the surgeon is doing differently than before.

Don't fret if you do get some stress incontinence that is bound to happen, anything that makes you contract those muscles so coughing, sneezing, hiccupping, belching and yes farting not to mention standing in a warm shower , lifting and bending or any state of arousal however minor. I think it is probably a good ideaa to pee regularly rather than wait until you are desperate to go.

Keep smiling

User

Posted 26 Jun 2015 at 17:17

Hey Chris

That's fantastic news about the wee control, well done to you sir, I have been thinking about you everyday and hoping each day you were getting better and stronger.

I saw the surgeon today for the first time and decided Da Vinci will be the way forward, I got home this afternoon and the phone rings, my date is the 6th July for the surgery, totally left winged me, I wasn't expecting that so soon.

Keep doing what your doing my new friend and all the best.

User

Posted 26 Jun 2015 at 17:40

Good evening Chris,

Hospital is a mixed blessing. The best place to be if anything goes awry, but you want to be home, and hope nothing goes wrong.

You have made remarkable progress in regaining your urinary control so soon, rewriting the medical books. And you can be delighted with that. Do not be too disappointed if it you regress a bit, it's normal and natural as your body recovers and adjusts to it's new normal.

Have a good weekend.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 28 Jun 2015 at 14:07

At last out of hospital today after 13 days. El on her way. I'm BUSTING for a pint.
Surgeon rushed my histology due to my blood illness so I will know In 10 days about prostate grade / margins / Lymphs. PSA still 6 wks though.

I desperately don't want to upset others far less fortunate , but my continence remains unbelievable. I accept things could change though. I just want to tell my journey how it is. So I prob won't post for a while , other than to converse with others.
Chris xx

User

Posted 28 Jun 2015 at 15:23

Chris

Don't hold back post, good news is always a great tonic.

Your first pint will probably taste fabulous after finally getting the go ahead to leave the hospital.

Best wishes

User

Posted 28 Jun 2015 at 19:32

Welcome home Chris !!

Excellent news regarding the continence.
Good news about continence is good news to somebody so never be afraid to post.
You know yourself how much you benefited from the experience of others.
Sometimes that experience is negative but no knowledge is ever wasted.

Enjoy your pint. You deserve it!!

Best wishes to you and El and the little man
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 28 Jun 2015 at 20:36

Hi Chris,

Great news you are home and the continence too, gives Stuart a little bit of hope as his op is in 10 days! Hope you enjoyed your well deserved pint too 😜😜

I am sure your lovely wife is also glad to have you back home.

Trish x

User

Posted 28 Jun 2015 at 21:04

yep keep them posts a coming it makes good reading, reading about good news

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 28 Jun 2015 at 21:35

Great news Chris,

You will probably be peeing even more after a couple of pints.

Keep us all posted.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 28 Jun 2015 at 22:41

That's excellent news, Chris. This forum offers experiences of all sorts, and it's great to hear success stories. Keep us informed of your progress and experiences - positive news is always good to hear.

Well done.

Paul

Stay Calm And Carry On.

User

Posted 29 Jun 2015 at 12:16

I agree with all of the others Chris good news should be shared , so glad that you are on the mend and on your way home. Enjoy that beer.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Jun 2015 at 09:24

pleased your home Chris take care Andy

User

Posted 30 Jun 2015 at 13:51

Been called back tomorrow ( Weds ) 10.30 . Three days after discharge . Exactly 16 days after operation . Just cant understand and asked clarification , but you know how it is . Maybe Histology of prostate / Lymphs back . If it was good news couldn't they just say . Im nowhere near having a repeat PSA ( 4 wks away ) . Does the phrase Shi....ing it mean anything .
I can only wait and see , and report back
Getting kind of bored now . Just desperately need rest and sleep . Im a bit of a wimp im thinking . Awake all night last night as im off all my meds that caused the Neutropenia . But doctor is on it I think . They don't know whether to put me on Lithium again Grrrr , or watch and wait how my mood is . But you cant go on Diazepam and Zopiclone forever can you !!
But heaven to wake up with Elaine and have a cuddle this morning briefly , before " the monster " burst through the door .
Speak soon xx

User

Posted 30 Jun 2015 at 16:44

Good luck tomorrow Chris.
Hope the news is positive and/or doable.
I expect little man monster also wanted his cuddle too!!
He's also glad daddy is back home

Chin up
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 30 Jun 2015 at 17:03

Hi Chris,

Will be thinking of you tomorrow guessing it's the histology report.

Trish

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