My Retzius sparing RARP + NeuroSAFE journey

User

Posted 22 May 2020 at 10:00

John

I’d need more than two hands for this 🤷🏼‍♂️ 🐙

Purchased some more Sauvignon Blanc...for medicinal purposes 🤔

User

Posted 23 May 2020 at 00:51

We’re quite a jolly little group here sometimes aren’t we, given that many are are riddled with cancer?

League or union, Matron?

Cheers 🍾 🥂

John.

Edited by member 23 May 2020 at 05:30 | Reason: Not specified

User

Posted 23 May 2020 at 11:26

How dare you 😱 - union, obviously!

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

User

Posted 12 Jun 2020 at 17:25

Update month 7:

Just a quick update. All still pretty stable. Pelvic floor discomfort improving slowly. Couple of bladder voiding issues which were quickly mitigated with Sauvignon Therapy. Since then I found coffee and hot curries were trigger foods although had been eating for months beforehand without issue. Removed these from my diet and problems totally resolved and peeing like a racehorse.

So all good thus far. Hope everybody is staying safe and enduring the lockdown.

Have a great weekend.

Simon

User

Posted 12 Jul 2020 at 22:21

Originally Posted by: Online Community Member

Curious what sort of flow meter you got?

I knocked one up from some scales and a Raspberry Pi (computer, not dessert) the first weekend when I was having my external beam radiotherapy.

And recording everything - a man after my own heart. I do still record peak flow rate sometimes, and 9 months after HDR brachytherapy treatment, it's still slowly increasing, although not yet back to the starting point.

Another techie here. Spent a couple of hours with a Pi and HX711 scales kit this evening. It works more than well enough to confirm my suspicions that flow is much better post surgery (17, up from 10). I will probably now spend far too long making it draw pretty charts from the data with matplotlib 😂

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 12 Jul 2020 at 22:37

hahaha my flow nominally is as good pre-diagnosis. Does go up and down a little but mostly fine. The nerves/brain are still forming the new neural nets to cope with the change of config :-)

Visualising it in Oculus Rift VR would be cool :-)

User

Posted 12 Jul 2020 at 23:23

And I thought I was over the top with a boots urine bottle and the second hand of my watch.🥴👍.

Thanks Chris

User

Posted 13 Jul 2020 at 18:26

Originally Posted by: Online Community Member

Visualising it in Oculus Rift VR would be cool :-)

If you had the goggles on while you did it, the wee would very likely not end up in the intended receptacle. 😂

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 13 Jul 2020 at 19:18

Hahahaha bad enough trying to find the keyboard keys 🤓

I used oculus to help visualise my 3T mpMRI image data. After looking at lots of reference images I would able to determine the suspect areas before seeing my consultant for feedback and the dreaded diagnosis. I made a few 3D cross sections looking outwards and showed then to my good lady whose words were ‘I cannot unsee this...’ 😝🤖

User

Posted 28 Aug 2020 at 13:48

9 months posts a RARP Update:

PSA Bloods result came back <0.006 ....so using the sensitive kit again by the looks and great result. Next test will be mid November then onto 6 monthly test assuming no change.

Pelvic floor discomfort resolving slowly. Couple of Minor drips here and there mainly if I’ve had a skinful of wine so now cut down a non issue.

Good bladder Control and pretty much like pre surgery. No ED issues...the more I use it the better things get so tadalafil isn’t necessary really. I take a couple of 2.5mg doses if I want to feel like a twenty something again 😀

Have a good bank holiday weekend all!

Simon

Edited by member 28 Aug 2020 at 17:31 | Reason: Not specified

User

Posted 28 Aug 2020 at 14:46

That's great news Simon

You really have had the perfect outcome and that is so great to read.

Have a great bank holiday

Clare

User

Posted 28 Aug 2020 at 15:09

Fantastic update

Really pleased you have such a great outcome

Enjoy the Bank Holiday!

User

Posted 28 Aug 2020 at 16:02

Good result Simon. 😀

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 28 Aug 2020 at 16:56

Simon

Excellent results on all fronts, long may it last.

Thanks Chris

User

Posted 28 Aug 2020 at 17:07

Great result Simon.

Ido4

User

Posted 29 Aug 2020 at 08:57

So, Symantec, Professor Whocannotbenamedhere strikes again!

Sorry you have had persistent pelvic pain, but as I have said before, my surgery was shockingly painless - that Fentanyl and spinal jab do a bloody good job!

My abbreviated penis now only works for micturition, so you are lucky in that regard, but the rest of my plumbing works fine.

I have extended my PSA tests to six months, although I will have one before Christmas to put the PSA graph on my customary Xmas card to the Prof., together with a can of WD40 as a drink for his pet, Da Vinci.

Stay well!

Cheers, John.

User

Posted 29 Aug 2020 at 11:24

Hi John

Its more discomfort when seated. I suspect its from the scar tissue so over time will soften and settle and become more flexible. Nothing I notice when active and out and about.

Yes apart from the needle the spinal anesthetics were certainly gold standard. I used very little over the counter painkillers post surgery. Plus was very happy to wake and find I wasn't plumbed into an abdominal drain.

Good to hear the plumbing is well settled.

Keep up posted on your next PSA result!

Have a good bank holidays weekend. Bit of a shock this 18C :D

Simon

User

Posted 16 Oct 2020 at 20:16

Hey AT

tried to respond by inbox full.

That’s great news. Just wanted to ping an email to say I picked it up and want to respond but need my main computer as long email. Give me a day and will address all points in detail. In short all great thus far....almost have to kick myself to believe I had major surgery last year. Are you booked in to London Bridge?

will be with my main computer in the morning so will respond more then.

speak then

Simon

User

Posted 18 Oct 2020 at 09:32

Thanks so much TG. I will clear out my inbox and I don’t know why it is always filled up!!

Yes it is at London Bridge. Speak soon!

User

Posted 18 Oct 2020 at 09:40

Ps my inbox should work now. Pls let me know if there is an issue. Thx much as always!

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