Chris J's Journey

User

Posted 15 Jul 2015 at 17:46

Just information really

Slightly annoyed as just got my post-LRP follow up appointment for 12th August which is 8 weeks instead of 6 weeks after. Its such a waiting game . My ED clinic appt is for the 3rd , but she said it might be with a different consultant instead of a nurse / ED specialist so I should get my PSA test done anyway . All quite confusing for someone who abides strictly to the " law of straightness " . Grinding my teeth as I type grrr

User

Posted 19 Jul 2015 at 13:04

It's all beginning to really sink in now , and it sucks doesn't it ! I've been flat on my back for two days barely able to get up , which is so unfair on El.
Then we thought about last 8 wks :
Withdrawal from Testosterone Replacement Therapy re the cancer. So basically shattered. My pituitary gland doesn't order thyroid or testicle function. They won't put me back on it until clear PSA results
Radical Prostatectomy with lymph removal . Drain infection. Neutropenia.
Cold Turkey withdrawal from bipolar meds which were causing the neutropenia ( not nice withdrawal I can assure you ). I'm still not on replacement meds and am rapid cycling so not good. El and I see psychiatrist tomorrow and will probably be put on Lithium for the rest of my life , which basically kills you slowly via thyroid and kidney problems anyway.
I forgot how to sleep 2 years ago. Seriously. My old meds helped this so I've basically not slept for 4 weeks. They gave me Zopiclone 7.5mg which basically gives me 3 hrs max , but I will have to withdraw from that as it is for short term use only. So god knows what is going to happen now about sleep.
And my general beating up of myself re my agoraphobia. I've missed my sons circus this week due to it , and the schools year 2 leavers assembly is this week ( I read with kids ). The kids have made me a gift but I won't be able to attend. I'll bottle it at the last minute as always.
Oh and the mild incontinence and stark realisation that I will now forever have ED to some extent or another.

Remembering why I personally had no interest in going through with this at all ! It's just made life even worse.
I apologise to all those worse off than me , but jeez I feel wrecked 😐

User

Posted 19 Jul 2015 at 13:29

I can't think what to say that would make you feel better Chris.

All I can say is that I'm thinking of you and wishing you well, although I know that isn't going to happen in the near future.

You have had a rough ride in life with all your problems and ailments and I suppose life must seem very unfair and for some it is.

El is going to cope, she knows it isn't your fault. Just remember to tell her you love her.

Good luck with the psychiatrist tomorrow. Hopefully he'll have other options rather than Lithium bearing in mind your other problems.

My fingers and every thing else crossable are done!!

All the best

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

User

Posted 19 Jul 2015 at 16:48

Chris

Understandably, you're feeling on a real downer now. The drugs that help you cope with the bipolar are so necessary - to have them removed will leave you mentally and physically drained.

If I told you things are going to get better, that's no help at the moment. But they willl. Maybe not tomorrow, or next week, or next month. But slowly, hardly noticeably, there were will be improvements.

You have a wife who loves you, a family that cares. You will get through this!!!!

Paul

Stay Calm And Carry On.

User

Posted 19 Jul 2015 at 18:25

Chris

I know from your previous posts you are worried about going onto lithium.

All I can tell you is that my Dad went onto it shortly after having 5 lots of ECT, in his late fifties. He was still taking it 15 years later when he finally succumbed to oesophogal cancer. He drank almost every day and ate just what he fancied. It completely stabilised his illness. The only obvious side effect was his gait which became slower and more exaggerated. It never caused him any kidney problems at all.

I know the mood swings will be hard for you right now, so many changes to your meds and so many major upheavals. Thank goodness El seems to be able to cope with it all as well as looking after your family.

The kids at school would want you to be there next week but I am sure they will also understand if you cannot.

You will get through this just try and have faith in yourself as you have been doing brilliantly and also helpng so many others with your posts.

User

Posted 30 Jul 2015 at 17:08

Hi everyone
My results aren't due until the 12th of August , which will be full Histology , margin status etc . But my home doctor just rang me with my 6 week PSA which I had yesterday . It should be undetectable but came back as 1.5 which is within normal limits . I'm NOT panicking in the slightest I promise you . Im happy to wait to see my surgeon .
Anyone any ideas or comments ? Good or bad ! I don't mind
Chris

User

Posted 30 Jul 2015 at 17:21

Originally Posted by: Online Community Member

Chris... Are your sure he said 1.5?.....

Maybe there is a misprint somewhere....it can happen believe me!

User

Posted 30 Jul 2015 at 17:43

Hi Luther
I know you said not to check , but he phoned me . Im honestly not panicking I swear . Im starting ED clinic 3rd Aug , and full results 12th . It is definitely 1.5 . Doctor said it might be where they left prostate on the nerve bundles . My PSA was also very high to begin with compared to most people . It was 43 just prior to surgery and had been rising 5 points per month . There was an object of interest on my bone scan ( 2 ribs ) but they rejected it as a previous trauma .
What do you all think ? Doom and Gloom ?
Chris

User

Posted 30 Jul 2015 at 18:15

I think it can take time to go down. Don't worry - see what it is in another 6 weeks.

Stay Calm And Carry On.

User

Posted 30 Jul 2015 at 18:24

Originally Posted by: Online Community Member

Nope!... Not all doom and gloom by any means Chris!

Until you get a full appraisal from the main man it's not in your interest for anyone to speculate......we are not medics after all!

Wait until you see 'the main man' on the 12th and he will no doubt explain everything...

Meantime, try not to get stressed out over this result when you've not got the full picture / explanation etc.

Many many options available to you if needed in any case..

Best wishes
Luther

User

Posted 30 Jul 2015 at 20:13

Hi Chris,

I'm sure things will be fine. I expected my PSA to be lower after radiotherapy but it was 1.6. It took until recently for it to drop to 0.083 and I'm hoping it will go lower.

I think you still have the option of radiotherapy, a lot seem to have it following surgery so that's the chance to zap any remaining cancer cells. Try not to worry. At least you have the chance of other treatment options.

Take care.

Steve

User

Posted 30 Jul 2015 at 21:29

Hi Chris,

Best to wait and see what the main man has to say, try not to worry too much.

Trish x

User

Posted 03 Aug 2015 at 12:40

Hello Everybody
Here's my update on my journey . A bit long but hope you can read as some conflicting data.
I saw the ED nurse today with Elaine . He was a lovely guy and gave me his mobile number to ring anytime and keep things moving . He recommended a pump to use as often as I possibly can . I will be getting a rep round to show me which I wont be embarrassed about at all . He is NOT putting me on daily 5mg Cialis -- Southampton believe there is no evidence as to whether it is necessary / effective as long as the pump is being used . He prescribed Viagra 50mg and 100 mg , Cialis 20 mg , and Levitra 20mg . He just said to get on with it as soon as I want and to try everything ( but no more than 3 attempts per week ) . If no success will then try me on Spedra -- a new drug that is similar but quicker in action and less side effects . And then he said I can just go straight for Caverject or Muse . We just have to go through the right procedure / protocol .
We wont get much chance to try as family here this week and holiday with kids next week . But I will keep you up to date with the erection journey !

They werent aware of my post LRP PSA test of 1.5 ( should be undetectable ) . He went straight off to see a consultant about that and came back and said unfortunately that was looking like future treatment and more scans . It will go to Fridays MDT meeting and my surgeon follow-up is next Wednesday anyway . I feel physically sick at the thought of HT / RT after having had the prostatectomy.

Has it brought Elaine and I closer together ? -- Yes it has definitely . Its been an immense struggle for us both since last September , especially for me who suffers badly with mental issues . We love each other and will fight it together , and I trust that we will stand together through it all.

Intimacy ?? Well we were "experienced" anyway , so it has been no difficulty whatsoever to continue a sex life . No adapting or adopting new things needed . My libido has stayed really high. But everyone says there is more to sex than penetration -- absolutely correct but im finding it immensely frustrating being completely impotent . But im sure that will get better . Not only that , but we have realised that when I have an orgasm ( not vigorous at all ) , not only is the orgasm pretty rubbish to be honest , but it leaves me in immense pain afterwards for hours . So much pain deep in my perineum that I can barely sit . And shooting pains . The ED nurse said this was abnormal but may improve.

Are we dealing with it ?? Yes . Together . Both El and I are actually amazed how well we are doing . We've accepted it and take each day . But im worried about more treatment

Best wishes to all Chris

User

Posted 03 Aug 2015 at 13:36

Chris, believe it or not I see a lot of positives in this post.
The most important one as far as your relationship goes is that you know Elaine loves you,no matter what. You were already Proficient in experimental sex from how I read between the lines, so for you two it's virtually business as usual from that point of view.
It's excellent news that your libido has remained high, some men lose that.
As for the pain. I'm surprised your nurse said it was unusual.
I know John didn't go the surgery route but even so, the pain he had on ejaculation was enough to take his breath away for quite a few seconds. He also had the shooting pains, especially when going to the loo, so since all that area has been messed around, whether through surgery or radio then why wouldn't it react with pain
Having said that, maybe because you have that experience there is no "oomph" in finding alternatives?

You are also very very lucky that you have an understanding ED nurse to guide you through what you can use. Even, by the sound of it, presenting you with real alternatives.
The only thing you don't mention and I assume it was said to you, is not to take the sildenafil (Viagra) and cialis together or within a certain time of each other. Unless that info has changed?

Yes it's a shame that your PSA looks like further treatment is necessary but none of these things can be predicted when you go down for the op. You know from your reading on here that very few of our men react the same as another with exactly the same treatment.

You can only make your choice and hope it it the right one for you.

Try and keep positive Chris. There is still much to be thankful for. The love of a brilliantly supportive wife and your own little soldier who I've no doubt is just glad daddy is there for him (or would be if he was old enough to understand the whys and wherefores.

Good luck Chris J. Wait for the result for the MDT/surgeon's meeting before getting too downhearted.
All the best
Sandra

Edited by member 03 Aug 2015 at 14:06 | Reason: Not specified

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

User

Posted 03 Aug 2015 at 14:18

Thanx Sandra x
Yes that should be clear shouldn't it. I can only use one treatment tablet at a time , and never more than once per 24 hours , and only 3 attempts per week in total.

User

Posted 03 Aug 2015 at 18:33

Hi Chris,

All you can do re the PSA is wait and see what they say on Wednesday, I really hope it goes OK and whatever they say you have El to get you through it all.

Trish xx

User

Posted 03 Aug 2015 at 19:21

Hi Chris,

I, like others, share your concerns and struggles. I also was terribly disappointed at having salvage treatment so soon after a RP.

Am amazed, too, at how well I am coping and dealing with it all. Needless to say we all have different coping abilities and strategies. Mine is to treat Pca with the disdain it deserves, put it in a box and deal with it only when it misbehaves and to carry on to squeeze as much juice out of my 'here and now'.

Like me, you have an invaluable asset: a supportive and understandable wife. It's a tough journey but not a lonely one.

Nearly 6 weeks now since taking Casodex. No side-effects seen or felt. Waiting for my RT (33 sessions).

Pleased that my latest PSA was 0.03, the lowest it has been!

I've accepted this secondary treatment (HT for 2 yrs) as a fait accompli.

Regards,
Jacey

User

Posted 03 Aug 2015 at 22:46

Chris

Sandra has posted another fantastic response not much I can add.

Just posting so you can really see we are all looking out for you.

User

Posted 03 Aug 2015 at 22:56

Chris

You know we're all rooting for you and El, you'll work it through - you've been through worse than this!

Best wishes as ever

Maureen & Steve

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

User

Posted 12 Aug 2015 at 20:01

Hello everybody
I had my 8 week post LRP Histology today- not the best of news i'm sad to say
* 6 week psa 1.5 . Tested today 2 weeks later and 1.8 ( 0.3 rise ) -- Choline PET scan booked
* Gleason upgraded from 8(4+4) to 9(5+4)
* Grading T4
* Positive margins all round
* 18 lymph nodes removed and 5 cancerous ( bi-lateral )
* Cancer on bladder ( was unsure whether to remove due my mental state pre-surgery )

* One suspect rib met

Officially G9 T4 N1 MX R1

I'm being transferred to Oncology . He said I still have a small chance of cure with maybe RT / HT. When Elaine asked if I would reach 58 he was very non-committal ( I asked if I was really in the sh..t and he said yes ).
He said my life would be basically treatment based forever now , which he knows i'm not positive about.

Vacuum pump working fine but I think only Harry Potter could actually maintain the erection he has achieved with it. I wasn't given daily Cialis 5mg so have been using this daily instead.
I tried a 20mg Cialis and he didn't even wake up ( which is fine as all thoughts of sex have rapidly disappeared tbh ) . And last time I had an orgasm it was followed by 6 hrs of abject deep pain and incontinence ( consultant couldn't explain the delayed pain and incontinence , but recognised normal immediate issues on orgasm )
He's offered me immediate Caverject to deflect obvious frustration if we feel like it when we get our heads around everything ( which will be a while I expect ). I know that may not work. We are fully aware Viagra etc should be tried many times before giving up .
Its not over yet I know - but a very rapid progression

Wishes to all Chris and El x

Maybe I should have split this post as very different subjects , but just reporting as is !

Edited by member 13 Aug 2015 at 09:57 | Reason: Not specified

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