Chris J's Journey

User

Posted 18 Jun 2015 at 07:36

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 07:46

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 09:22

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 19:43

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 09:41

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.

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 When asked why Oncology was withdrawn she didn't know.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

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 10:16

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

If life gives you lemons , then make lemonade

User

Posted 20 Jun 2015 at 11:18

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 22:30

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 11:33

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 20:51

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 07:29

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 10:54

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

If life gives you lemons , then make lemonade

User

Posted 26 Jun 2015 at 10:45

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

If life gives you lemons , then make lemonade

User

Posted 26 Jun 2015 at 11:28

Well done, Chris!

Hope everything continues to go well for you.

Steve

User

Posted 26 Jun 2015 at 14:10

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 15:20

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 16:17

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 16:40

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

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

User

Posted 28 Jun 2015 at 13:07

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

If life gives you lemons , then make lemonade

User

Posted 28 Jun 2015 at 14:23

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

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