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GregJ’s Journey - To Infinity And Beyond!

User
Posted 22 Jul 2023 at 21:35

Hi Al


I hope you keep going from strength to strength as each day passes πŸ˜ŠπŸ‘


I’m still in quite a bit of pain down below. It’s very hard to pinpoint exactly but definitely inside and toward the rectal area. As you and Lyn said, a lot has happened down there during surgery so it’s going to take some time to settle. 
I feel it most when I sit on a chair that isn’t soft, like a dining chair.


I can get semi-comfortable a lot of the time now, through shuffling to find the best position, so things must me starting to find their place again. I’m 3.5 weeks post op now … been the longest month of my life, truth be told! 😁


I definitely have other pain which is related to the hematoma, I can feel it especially when I lie completely flat. I’m still sleeping in one of the electric recliner chairs in the living room as it doesn’t go completely flat so it’s a lot more comfortable.


 


Look after yourself and good luck with a speedy recovery πŸ‘


cheers


Greg. 

User
Posted 22 Jul 2023 at 22:20

Hi again Al


I meant to say, I’ve had blood every day near enough since the op, up until 2 days ago. 
It seems to have stopped now, which I’m glad about. 


3 days ago I had the worst blood I’ve ever had, the toilet bowl was deep dark claret coloured …which was an absolute shocker I have to say. Then after that, touch wood, there’s been nothing. 🀞


 


Cheers


Greg. 

User
Posted 22 Jul 2023 at 23:00

Yep Greg, you’ve described exactly the pain I’m feeling and that general area too. 
A bit of twisting and turning in seats is needed to get comfortable. I’m with you!



Hope it gets better for you soon


A


 

User
Posted 22 Jul 2023 at 23:06
To be honest Al, I think it is a bit silly to be trying to work so soon - the pain and fresh bleeding should be telling you something! Not giving yourself time to recover can be more than just tiring - you can actually impede continence recovery and also worth noting that men who overdo things after keyhole / Da Vinci RP are at a vastly increased risk of hernia.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jul 2023 at 23:09

Ouch that must have been a shock at first? 
Did I see a comment that it’s a result of the repairing and ‘bits’ falling away from the scars etc?


With me at it feels like my urethra is on fire πŸ”₯ and a few times it went into spasm or cramp. 


Such fun eh!! 
Think of the cold beer 


 


 


 

User
Posted 23 Jul 2023 at 08:40

It certainly was a shock to look down and see that I have to say. Luckily it seems like it was the final swan song …. All clear since 🀞🀞


 


I also had and still occasionally do have pain in my urethra so I know exactly where you’re coming from there. It has also eased over the past few days and it’s now only, say, one in ten visits to the toilet as opposed to every time. 


I hope you see some improvement very soon πŸ˜ŠπŸ‘


cheers Al


Greg

User
Posted 23 Jul 2023 at 09:54

Thanks Lyn, yep I do know that in a perfect world I’d be work free for 4 to 6 weeks. But unfortunately I need to find a balance - just maybe more skewed towards rest than I had in the last few days.


A


 

User
Posted 06 Aug 2023 at 13:02
Hi Greg,
We haven’t heard from you for a while. How are you doing?
Derek
User
Posted 06 Aug 2023 at 15:03

Hi Derek


I’m ok, I think πŸ€” 😊


Nothing much has changed so I didn’t have anything to post on my journey thread. 

The main thing is that the bleeding seems to have completely stopped now. I’ve passed no blood, clots or debris in my urine for a good week or so now, so that’s a good and welcome result. πŸ‘


 


My heart rate is still a concern to me. It regularly goes into the 110+ area when I’m standing and walking. Sometimes even when I’m just sitting, which is worrying. 
I have spoken to my GP and my first PSA blood test is due next week but he is going to do a full bloods test at the same time to see if my red blood cell count and hemaglobin are still going in the right direction, after the internal bleed and the anemia. 


I don’t know why my heart has decided to increase its rate so much. It was up to 100+ in my pre-surgery assessment, something the anaesthetist picked up on, so I can’t just blame the bleed and the anemia for it. 

I also have my first appointment with the surgeon at the end of this month to discuss the pathology result, fingers crossed for that. 


I still can’t lie flat for a long time because of the pain from the hematoma so I’m still sleeping in a reclining chair every night, which is not exactly ideal. I am getting some sleep but I’m sure it’s probably not the best quality sleep. 


Hope you’re keeping well? πŸ˜ŠπŸ‘


Cheers


Greg. 

User
Posted 06 Aug 2023 at 17:01

Hi Greg,


Glad to hear that things are progressing….hopefully all will be well when you meet the surgeon. From what I hear it seems that you just need to let your body tell you what you should and shouldn’t be doing.


Im doing ok thanks, we’re out in our place in Fuerteventura with the grandsons at the moment, trying to keep my mind off the up and coming PSA test (first one since RT) and Onco meeting on 23rd. Anxiety is building but I’m trying to stay positive….helped by 2 VERY active boys🀣🀣🀣….and fantastic weather😎


All the best and keep in touch,


Derek

User
Posted 06 Aug 2023 at 17:04

Sounds like you’ve got your hands full Derek. πŸ˜ŠπŸ‘


Have fun and good luck with the upcoming test πŸ‘πŸ€žπŸ˜Š


 


cheers


Greg. 

User
Posted 17 Aug 2023 at 09:53

Had my first post-surgery PSA test yesterday, followed by an anxious wait for the results. 
They have arrived on my records this morning. 


0.03


Not the 0.01 I was hoping for … but still ok, isn’t it? 😬



Follow up call with the surgeon at the end of this month. 
Also, full blood count shows my hemoglobin and red blood cells returning to normal levels after the anemia from the internal bleeding. 

So, although I still don’t feel physically the best I ever have, the figures suggest I’m going in the right direction…. 🀞


Take care


Greg. 

User
Posted 17 Aug 2023 at 10:20
Did it have a "less than" in which case perfect..

If it didn't, the jury is out until the next test.
User
Posted 17 Aug 2023 at 12:52

No it didn’t have a less than sign but I’ve just read it on the app I use to access my medical records. 
I have an appointment with my GP tomorrow to discuss the other blood test results and then with the surgeon at the end of the month. 


This is an interesting article I read this morning. 


https://www.topdoctors.co.uk/medical-articles/psa-monitoring-after-radical-prostatectomy


 

User
Posted 18 Aug 2023 at 01:43


This is the situation for my husband, his psa was too low for the PSMA pet scan to pick anything up so they are taking the chance with full pelvis radiotherapy.


The machines he has been tested on only go as low as either 0.3 or 0.025 so this might be the case for your test.


Just regarding your high heart rate. Rob had this also, it would go up to 150 or more at times and could stay there anywhere between a few minutes and over an hour. He was diagnosed with svt and had an ablation…he hasn’t had any problems since and just hoping that continues.


Good luck with your upcoming tests πŸ‘

User
Posted 18 Aug 2023 at 08:20

Thanks Elaine


I’m discussing the results with my GP today and with the surgeon at the end of the month .. not sure if I’m ready for what they have to say or not yet. Gulp 😬


Fingers crossed 🀞 


Take care


Greg. 

User
Posted 18 Aug 2023 at 09:06

Hi Greg,


That was an interesting article…I wonder if there’s any papers on what to expect after HT/RT? Anyway I’m happy enough with 0.3, hopefully it will continue on the downward trend over the next 2 years. I meet my Onco next Wednesday so will see if he is happy!


Good luck with your up and coming appointments!


Derek

User
Posted 18 Aug 2023 at 09:22

Thanks Derek


I’ll discuss with my GP today but I think the main conversation will be with the surgeon at the end of the month.
I’m really interested to hear both of their thoughts. 


Good luck with your continued drop πŸ‘


cheers


Greg. 

User
Posted 31 Aug 2023 at 21:03

Had my follow up phone call with the surgeon today, 9 weeks since my RARP. 


He is happy that my PSA is less than 0.03, which he says is the lowest the local lab can measure. 
The pathology report showed negative margins so my cancer was downgraded from a T3 at diagnosis to a T2. 


So finally, after all the trauma over the past couple of months, I’m glad to get some good news. 


Continence is probably at around 95% now, with no leaks day or night unless I have more than 2 pints. I seem to be able to get away with 2 pints of beer/cider but if I have 2.5 I leak quite a lot through the night. Best way to reduce intake that I can see … unfortunately! πŸ₯΄πŸ˜


Erections are at around 60% of where they were before the surgery. 


I do seem to get a pain in my bladder from time to time, tonight being one of those times, but touch wood it’s always resolved without issue 🀞


Doesn’t feel like a UTI, no burning and pressure is usually excellent (like being 18 again!). Will just have to keep an eye on it and see what, if anything, develops. 


All in all I’m pleased with the progress so far. 
One thing I thought of asking, but didn’t, was would I have been a more suitable candidate for Active Surveillance (with hindsight of the pathology report). I didn’t ask as it wouldn’t change anything now of course because what’s done is done. The MRI obviously showed a lot of inflammation, which was mentioned at the time of diagnosis but it was deemed too big a risk to ignore. I’ll not dwell on that thought now, just keep moving forward. 


Hope everyone is as well as they can be. 
Take care


Greg. 

User
Posted 31 Aug 2023 at 21:52

Great to hear your update Greg and it sounds like you are doing really well with your recovery. You had a tough time at the start but looks like that is all in the past now and you’re making great progress.
dont look back and think about ‘what ifs’…I do that from time to time wishing I was able to have surgery but all it does is bring me down, much better to look at the positive side of this journey and all the fun you can still have!


keep strong and active!


Derek

User
Posted 31 Aug 2023 at 22:09

Great news Greg, really pleased you have had good results and that you are recovering well also πŸ‘

User
Posted 01 Sep 2023 at 01:10

A great result.


Active Surveillance may have been possible with a T2, but everyone thought you had a T3 and the only way they found out you were a T2 was by surgery. So no you were definitely not suitable for AS based on the information available at the time, and you can only act on the information you have available.


 

Dave

User
Posted 01 Sep 2023 at 08:44

Thanks Derek, Elaine and Dave.


I’m quite “grounded” about the results so far as unfortunately my arthritis is absolutely battering me at the moment πŸ₯΄


The good news is that the surgeon said he is happy for me to restart my weekly arthritis injections very shortly, I speak to rheumatology today so 🀞


Cheers 😊


Greg. 

User
Posted 18 Sep 2023 at 21:39

Hi all


Is anybody having issues with the forum? 
I have emails saying there are new posts on this thread but when I visit the thread they’re not there. 
When I click on the link in the emails to take me straight to the posts it says “Access Denied” 


Very strange πŸ€”πŸ₯΄


cheers


Greg. 

User
Posted 18 Sep 2023 at 21:51

No I'm not having problems, but ever so often there are spam posts which get deleted. That would cause an email which couldn't link anywhere.

Dave

User
Posted 18 Sep 2023 at 22:03

Thanks Dave


Thats probably what it is. 
Cheers


Greg. 

User
Posted 02 Nov 2023 at 21:07

Hi all


Hope you’re keeping as well as you can. 


My recovery from the surgery is just about complete I would say. 
I am however having a really tough time with the Tadalafil .. I cut it down from one 5mg daily to one 5mg every other day and now I’m taking it every 3 days. 
It makes me feel really ill to be totally honest. I never feel too good every day anyway, because of my arthritis and a gastro issue but the Tadalafil seems to amplify everything all the way up to 11 😣


These symptoms are from my arthritis but much worse with the Tadalafil.


Aching muscles in legs (severe), brain fog, fatigue, nausea, weakness in hands, an all over “ill” feeling. 

I have been given some viagra to try but I’m afraid to take that too because I understand more people have side effects from that than they do from Tadalafil. 


Has anybody else switched over to viagra because of unwanted side effects?


If so how did it go? 


Stay safe folks, take care


Greg. 

User
Posted 02 Nov 2023 at 21:50

Hi GregJ,


I've tried Cialis and Viagra.


Cialis gave me aching limbs for the first half a dozen times I used it, but then it resolved.  However, unlike your good self, I don't have arthritis.  I didn't experience any of the other symptoms you mentioned, although I think that I have more vivid dreams when I've taken it before bedtime. (?).


Viagra gives me a flushed face and stuffy nose, and sometimes red eyes ( so, a bit like hay fever, I suppose).  I've taken a decongestant which helps.  (Don't use Sudafed, though - it counteracts the Viagra).


Best wishes,


JedSee.

User
Posted 03 Nov 2023 at 00:43
Greg, give up the Cialis - it is supposed to help, not reduce your quality of life. You have had the benefit of it for 5 months or so and it will have been doing a good job of drawing oxygenated blood to the area to aid your recovery from the op but it is clearly not going to assist you in getting erections if it makes you feel awful. There are other things you can do to maintain penile health & encourage recovery of erections .... lots of masturbation, a vacuum pump, etc.

There is certainly no harm trying Viagra as you don't have to take it every day like Cialis low dose. If you stop the cialis and give yourself a couple of weeks to see whether the pain, etc., reduces (and is therefore definitely down to the cialis), you can take a viagra when you are feeling randy and see what happens. You are right that some men have a pain in their penis / groin after sex using viagra but the good news is that it isn't associated with the constant muscle / leg pains that Cialis seems to cause.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Nov 2023 at 09:04

Thanks JedSee and Lyn …


(sounds like some kind of singing duo off X-factor! 😁)


I was thinking of trying half a viagra to see if I have any side effect reactions then perhaps trying one full one to see if I can tolerate it. 


I was considering giving up the Tadalafil Lyn to be honest, like you say, it just isn’t worth it, the way it makes me feel. 
I am quite unwell from my arthritis anyway (not osteo, it’s an autoimmune inflammatory type) so it doesn’t take much to push my body over the edge of functioning for normal everyday tasks. 


I had a meeting with an urology nurse and a salesman from Medicare last week and my SOMA pump is ordered on prescription, I’m told it should be here within another week. So will give that a try. I am of the understanding that it utilises vein blood though and not oxygenated arterial blood, so although it makes things “useable and functional” it can look a little grey!? I guess I’ll find out in a week or so. 


Thanks again, take care


Greg. 

 
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