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GregJ’s Journey - To Infinity And Beyond!

User
Posted 06 Apr 2023 at 12:20

Hi all

Well, after all the waiting for test results, I guess my journey starts properly today. 

Just back in from my 3rd urology consultation. It has been a different consultant each time and I have to say the doctor I saw today was brilliant. 

Straight off, the moment we sat down, he said I can tell you that your bone scan is clear. Huge sigh of relief! 

He then went through all of my questions, of which there were many, very patiently, thoroughly and clearly. 
My initial feeling, since diagnosis, was to go with surgery. This was a 3 part decision (rightly or wrongly):

I had SRT to fall back on if required (contentious point to some I know)

It would be the quickest way to be declared “cancer free” so my inflammatory arthritis meds can be started again (paused if cancer present)

My family has a history of colorectal cancer.

However, I have thought for the last couple of weeks that my existing medical conditions (very large hiatus hernia and inflammatory arthritis) would exclude me from surgery. I discussed this with the consultant today and he put it in a way that I actually thought could be a good metaphor for life! He said:

”Don’t look at it like this, I’ll be excluded because of A, B or C. Look at it like - What do I want to do. Then we will pursue this route and if we hit any obstacles along the way we will deal with them as they arrive”

I’d never thought of it like this, probably because I am always guilty of overthinking and looking too far ahead. It made real sense and I instantly warmed to him. He was saying, tell us what you want and we’ll do everything in our power to make it happen. Brilliant, in my humble opinion, making me feel like a human being!

He spent a long time looking over the MRI and biopsy results while we were there and we discussed the pelvic pain that I’ve had since this started. In fact it was that initial investigation into suspected Prostatitis that has uncovered the cancer.
He thought there was a large possibility that some of the MRI regions could be inflammation rather than cancer. The largest suspect target area had 4 cores taken and 3 of them were Gleason 6 (3+3). He also said the MDT think that it is touching the capsule but not broken through it yet. Hopefully this is the case and if I do have surgery it will be clear margins all round 🀞 

So, my wife and I looked at each other and could agree there and then that we would like to try down the RP route. 
So he is writing to the surgeons hospital (Freeman, Newcastle) to ask to arrange an appointment with the surgeon and anaesthetist. Of course, they may say that surgery is unsuitable for me, in which case it’s back to Cumbria for RT but he explained this and we agreed that the RP is worth pursuing. 
Instead of giving me the choice and just leaving me to it, in the dark, he did suggest that because of my age, RP would be what he recommended - if he had to. 
If I come away from the pre surgery appointment and I feel it’s not for me then he will completely back me and as he said “we will always have another plan”

Also, this small wait for the surgery, may give gastroenterology time to get me in to see if we can fix the abdominal and bowel issues I’ve had for the past 12 months. 

All in all I feel a lot more positive than I have done in the past 2 weeks since diagnosis, which has got to be a good thing surely?

So I think I’ve set off on my road and hope it all goes to plan over the coming months. 
As Buzz would say…

To Infinity, and Beyond!
πŸ‘¨‍πŸš€

Take care all

Greg. 

User
Posted 30 Jun 2023 at 11:27

Hi all

Well that’s that then! 

The anaesthetic, which was one of my many initial fears, was brilliant actually. Haha.
He was chatting away, as he put the cannula in.

Then he said, “this is just some pain killer, nothing to put you to sleep yet. Bit of a cool feeling up your arm. Right, now this is the stuff that puts you to sleeee…..”

Cue waking up in recovery, constantly trying to remove my mask, being gently told to leave it alone … then trying to get out the bed .. I really need a wee! You’re fine, you’ve got a catheter fitted. Hand pulled away and covers tucked in again. Warm blankets all over me.. it was actually lovely as many have said. 

Back on the ward by 7pm. No pain at all really. Very tired of course and woken up every hour until 2am for blood pressure check. 
Apparently I bled a lot and they did fit a drain which needed emptied twice. 
Surgeon said I was just a bit “gooey” … who’d have thunk that was a medical term. It came out yesterday and it had leaked quite a lot, quite a bit of blood on robe and bed, which was a surprise. Sister told me to stop being a drama Queen… it’s probably only about 50ml … to which I suggested it might be just 50ml to you but it’s a bloody armful to me! … like she won’t have heard that hundreds of times. 
 
 I only got 2 hours sleep the night before the op and the night immediately after on ward, we had a very serious snoring problem. Like sounds ive never heard before! 😳

So last night I spoke to the night nurse and she found me an empty day treatment room so I was wheeled in there and the door closed. Absolute bliss! Slept like a baby. 
Feel much more human today and getting discharged very soon, as soon as my lovely lift arrives. 

Surgeon said operation was full nerve sparing so fingers crossed I’ll be “up and running” in 1-2 years  

Pathology report about 3 weeks away he said so toes crossed we get clear margins  

Still a lot of pain from the CO2 but trying to stand and move about as much as possible so very slowly it’s “peeping” out 😳πŸ₯΄

I still don’t know how the gas is pumped into the abdominal cavity yet ends up in the intestines and colon…does it just get absorbed through?

So all done, definitely not as bad as I thought it was going to be, especially after I was educated by the warriors on here who’ve been there before. 😊

Quite stiff, a little tired, leaning over a lot to try to let a “peep” come out without pushing πŸ˜‚ … but all in all not bad at all. Definitely nowhere near as bad as I thought it was going to be. 

I hear that having to have a drain is very rare nowadays so most people will sail through it without problems.  I do like to make life as complicated as I can … it seems! πŸ™ˆ

Take care all and thank you for the support  

All the best

Greg 

 

User
Posted 12 Jul 2023 at 10:25

It sounds like your continence is doing very well. Blood and debris is still common at this stage.

Documenting on a thread like this is a very good idea. Future readers will be able to read exactly what recovery is like, blow by blow, not just the edited highlights.

Dave

User
Posted 19 Jun 2023 at 15:55
I am sure that everyone is different but I went in freaking out about it - thinking the worst things that could happen - and none of them did!

I can't say exactly that it was an anti-climax because it's serious stuff but it was about 10% of what I feared.

Walking into the theatre is daunting but lots of smiling eyes (I am sure they were really smiling behind their masks). Lay on the bed and breath into the oxygen mask which is quite hard to do and then the last thing I remember was a nurse with the prettiest blue eyes and then bang, I'm gone.

I wake up (apparently) 5 hours later in recovery with no pain but a couple of inflating devices around my legs that would stay there for 24 hours. After an hour or so I am wheeled back to the ward and I just sleep on and off until tea time. Given a full meal and no signs of being sick or anything.

Nurses pop back in every hour or so to check on temp, blood pressure and the state of my urine bag - still no pain. Manage to get a couple of hours of sleep that night.

Next day the shoulder pain started which is a side effect of the CO2 gas they use to inflate your abdomen. It's the most painful part of the procedure and you will need some good painkillers so don't let them fob you off with a paracetemol!

The catheter is awkward but unless you catch it wrong it's not painful - ask them for someway to fix the pipework to your leg to stop it swinging about.

You will be up and walking around the day after the op and probably asked to shower and then released home. No driving with the catheter of course.

You will have prescriptions for day and night urine bags, painkillers and daily anti-coagulation injections - get some antiseptic solution as well as you need to keep the catheter sterile clean.

That's about it - the wounds heal after a few days, you need to have a bowel movement within 2-3 days of getting home and you need to take things steady for a couple of weeks - as the wounds heal quickly it is easy to forget that you have had some serious internal surgery.

Yep, about 10% of what I imagined was going to happen :)

User
Posted 11 Jul 2023 at 16:49

So, catheter out earlier today, which wasn’t as bad as I was expecting I have to admit. Not the most pleasurable thing I’ve ever done but not too bad 😊

Little bit of leakage in the time since, but I did manage the two hour journey home without any major incidents. I was definitely ready to go by the time I got home as there was certainly a build up of bladder pain, I was managing to hold it, but it was all I could concentrate on I have to say. 

I guess we have to hold it as part of the bladder retraining? 
How long are we supposed to hold it for? 

I’ve had very little advice on that to be honest so I’m not sure what I should do for the best. The leakage I’ve had are at the strangest times, not when I’m coughing or bending or standing, like I imagined it would be, more maybe after 4 or 5 steps once I’ve set off walking. That has surprised me I must say, I thought there would be triggers but it seems a bit random so far. Anyone experienced the same?

 

Also, a small amount of blood sometimes when I go but the nurse said this is completely normal and could last a couple of weeks yet. Anybody any advice or reassurance to offer? 😊

 

Some good news on bloods (which they took again today) my hemoglobin has risen to 118 so definitely on the right path. It dropped as low as 70 when I had the initial internal bleed but has risen between 5-10 each day, which is reassuring. Normal levels for an “old man” is 140 and above so I’m nearly there. Plenty of liver and black pudding to come, to help the levels. Nom nom nom nom 😁

 

Hopefully I can feel that my recovery can start properly from today as I’ve felt in limbo for the past 12 days, since the surgery. 

Take care

Greg. 

Edited by member 11 Jul 2023 at 16:51  | Reason: Typo

User
Posted 15 Jul 2023 at 18:03

Thanks Derek 

It’s a right old palava this isn’t it.  πŸ₯΄

I thought I would have follow up appointments with the urologist, CNS and maybe incontinence nurse but so far no word.

I really need to start exercising but I’m absolutely knackered since the fortnight of problems I had. 
I spoke to my GP yesterday and he reckons that it’ll take at least 3 months for my blood to recover from the anemia, separately from the normal surgical recovery (which will be slightly longer for me because of the hematoma and my inflammatory arthritis). 

I’m going to take another week for more recovery and if things haven’t changed I’ll start to make some calls to see if I can have a sit down with some of the medical team to discuss. 

Thanks for the heads up πŸ‘

cheers

Greg. 

Edited by member 15 Jul 2023 at 18:04  | Reason: Not specified

User
Posted 17 Jul 2023 at 18:06

Well…today was a strange one! It shows how different we all are. 

I’m 19 days post op (with post complications) and 6 days post catheter removal … and today I had a voluntary/spontaneous erection. 😳😊
Apologies if I’ve used the incorrect term but basically it was unaided by drugs or device. 

Maybe my luck has turned. 
Should maybe put an extra lottery ticket on this week 😁

Cheers

Greg. 

User
Posted 06 Apr 2023 at 14:08

Your consultant sounds great and very measured. I hope all goes well for you. 

Ido4

User
Posted 06 Apr 2023 at 16:11
Excellent! Most people feel much happier once there's a definite plan it place. Takes away a lot of worry and uncertainty. Onwards and upwards!

Cheers,

Chris

User
Posted 06 Apr 2023 at 18:00

Greg, I’m so pleased for you, and your consultant sounds like a really good one…it makes such a difference when they take their time and show some empathy, which is sadly lacking with many of them.

I hope the surgeon you see is equally informative and will allow you to make the best decision for YOU.

Once you’ve made your choice I am sure you will feel MUCH better.

Derek

User
Posted 06 Apr 2023 at 18:02

What a brilliant post Greg. Agree with Ido, your cosultant seems to be bang on and exactly what was needed.The turning of a corner after diagnoisis , for me, was almost certainly my deciding on which treatment and way forward.

My operation was a breeze mate. In on the Tuesday morning, home on the Wednesday afternoon. Catheter removed 9 days later with no issues and 100% continence.

ED naturally follows and almost 11 months on, im improving each day. It was around the 8 month mark that I started to feel proper progress. I had 80% nerve sparing.

My histology was as good as I could have hoped for, with negative margins and no breach. All the same as biopsy had indicated. G3+4 and T3A. Last week I had my latest undetectable PSA.

Naturally this site is not a place Im comfortable being hugely positive in, given some of the brave super souls that are among us here whos prognosis isnt as positive.

Genuinely wishing you all the warmth for your coming months mate. Oh and if its any help, I still have half a dozen Instillagel syringes that may or may not be of use to you. Just pm me your details and I will happily forward them to you.

Jamie.

 

User
Posted 06 Apr 2023 at 18:17

Great that the bone scan was clear. What a relief that must have been. 

User
Posted 06 Apr 2023 at 20:09

You have the two most important things in place: a plan, and a consultant in whom you have confidence. You are good to go! 

Best of luck

User
Posted 06 Apr 2023 at 20:29

"Naturally this site is not a place Im comfortable being hugely positive in, given some of the brave super souls that are among us here whos prognosis isnt as positive."

Lordy, if we didn't have some of the positive stories, everyone would just give up the minute they were diagnosed. There is a huge difference between a stoey of a good outcome and a post which denies the possible risks. Don't ever be reluctant to tell us the good stuff!

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

User
Posted 06 Apr 2023 at 20:31
I am pleased that you have a plan Greg - if you were my brother or partner, I would have been saying go for surgery.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Apr 2023 at 21:12

Met with the surgeon today. He was a nice guy to speak to and although I had a whole page of questions he had already answered 90% of them in his “opening speech” when I first went into his office. 
He went through all my files again, pulled up the MRI’s and went through each lesion in the prostate, it’s size, position and likelihood of capsule breach. 


His gut feeling was that it shouldn’t have breached the capsule yet and thinks my T3a diagnosis will ..or could (of course, no guarantees like Del Boy) be downgraded to a T2. 
At one point he ruminated on active surveillance but only for a matter of 10 seconds or so then discarded the idea and said active treatment is the way to go.

He said although the biopsy showed low grade it is still classed as high risk because of the position of the larger suspect lesion. He did say that it is in a difficult position so the biopsy may have missed some of the cancer cells so the Gleason score may yet be increased.

On a plus note he showed me the position on the MRI pictures and it is at the top of the prostate so he was sure that full nerve sparing would be possible. He also measured, on the screen, the size of my “thingsme-what’s-a-jigg” … not a euphemism!, I just can’t remember what biological term he used for the particular part of my pelvic floor (sorry), and said that in his experience it bodes well for a reasonable return to continence after surgery (again, no guarantee of course).

I asked about my other health conditions and whether they would exclude me from having a RP, in particular my large hiatus hernia. He did not think it would be an insurmountable problem and that the anaesthetist would be made aware and would pay close attention to stomach issues during the op (as in matter entering the lungs). He said likely with the use of PPI meds (which I’m already on) and a stomach “cuff/tube” 

All in all I felt more positive after speaking with him. I have to return soon for the pre-op assessment and if I pass that then it can be organised within the following 4-6 weeks. 😳 All a bit sudden but I suppose better that than worrying about it for months on end whilst waiting.

The hardest part about the day was the 2 hour drive there … and the 2.5 hour drive back. I took a left out of the hospital instead of a right and ended up nearly in the middle of town through heavy traffic. Satnav tried to take me up several closed roads but I eventually found the way out of town….there was one point that felt like driving round Le Arc de Triomphe!….but I just shut my eyes and went for it! πŸ˜‚

Cheers all, take care

Greg.

 

Edited by member 20 Apr 2023 at 21:15  | Reason: Typo

User
Posted 20 Apr 2023 at 21:45
All sounds positive, Greg. Glad to hear there's a plan!

All the best,

Chris

User
Posted 20 Apr 2023 at 22:02

Thats really good Greg, it makes such a difference when someone takes time with you…this was sadly lacking for me.

good luck with your choice….it will be a big weight of your shoulders when you’ve made it.

Derek

User
Posted 21 Apr 2023 at 03:27

This sounds like a great and positive meeting Greg.  I am sure your surgery will go well, sounds like they are communicating well and taking your own needs into consideration. 

Best wishes

Michael 

User
Posted 19 Jun 2023 at 11:54

Same as you, never been in Hospital for anything other than a few stitches. I had no idea what to expect. But the clinical staff really do lead you through the process on the day.

Having the GA injected and going to sleep is not like it's shown on TV. "Count backwards" etc

Mine was right Mr X I am just going to give you something to help you relax and bang that was it, out for count. Probably 4 hours in fact. Next thing I knew I was in the recovery ward asking to get up since I needed to go to work... I really must get my priorities right.

 

User
Posted 19 Jun 2023 at 14:50

Best of luck! I had my op just after Easter and went in feeling fit and well but knowing I would feel awful afterwards! It’s the 1st time I had any form of anaesthetic and I must admit it was a wonderful feeling suddenly going off and then waking up thinking where the hell am I! There’s a thread from a few weeks ago called practical advice before surgery which covers many points. I just took in change of clothes (loose baggy ones) some snacks phone and charger. Before op suggest you get personal grooming sorted - haircut toe nails etc as it would be  6 weeks or so before I could get out to have my hair done and bend down to cut toe nails! Finally take it easy and be patient remembering everyone is different. 

User
Posted 19 Jun 2023 at 16:27
If you have any questions then either post or message me and I can tell you my experiences - now 5 weeks post RARP.

I was fortunate that I was #1 for the day at 8am in theatre so they had me in the night before but yes, staying local to the hospital sounds like a good idea but I doubt you will sleep much unfortunately - but there really is nothing to be concerned about. Just remember not to eat or drink after the allotted time but if you are staying in a Travelodge then that's not going to be difficult :) :)

I had zero abdominal pain - just the shoulders and in my case my back as I have some arthritis in my back and side sleep but had to sleep on my back for 3 days.

Keep smilin'

User
Posted 19 Jun 2023 at 18:36

Haha cheers Steve. 

Yeah, I’ll be having an evening meal before I check into the Travelodge!

Got stop eating by midnight but I never eat after about 9pm anyway so hopefully it’ll all work out. I was wondering about sleep the night before, in a different bed as well but at least I’ll be “resting” if nothing else. 
Thanks for the encouragement πŸ˜ŠπŸ‘

cheers

Greg

User
Posted 22 Jun 2023 at 10:33

Great you have a date now Greg. I was nervous about the general anaesthetic too but the team in the anaesthetic room were brilliant at reassuring me they would look after me.

I knew I had to have the treatment so just placed my faith in the team. 
I came around very gently after the anaesthetic and was looked after by a great team in the high dependency unit until I was moved to a ward.

The hospital teams are expert in this.

At one point as I drifted in and out of a very pleasant sleep I realised that one of the nurses in the high dependency unit was the daughter of a neighbour of ours. That was very reassuring!

Wishing you all the best for the 28th.

Ido4

User
Posted 22 Jun 2023 at 17:42

Hi Ido4

Thank you for the reassurance. 😊

I’m definitely getting more nervous as the time approaches but you’re right, I’ll just put my faith in the wonderful staff that work in the NHS. 
Modern day heroes one and all. 

I hope once I’m there and speaking to them it will feel reassuring and things will happen quickly and automatically so I won’t have too much time to dwell. 😊

 

Thanks again and take care

Greg. 

User
Posted 22 Jun 2023 at 19:38
:)

You will be back on here in a couple of days saying "why was I worrying about that" - really, it will be a lot less than you are expecting.

See you soon!

User
Posted 27 Jun 2023 at 20:28

Well, it’s getting closer 😳😳🀒

Sitting in a Travelodge room … bored, bored, bored … 

Just sitting thinking about tomorrow morning. Up at 5am to get to the hospital for 7. 

Sure I’ll be fine once I get into the hospital and talking to the team but at the moment I’ve just got anxiety and nerves rolling around my noggin. 
Hope I get some sleep at least. 

See you on the other side. 
Cheers

Greg. 😬

User
Posted 28 Jun 2023 at 05:24

Haha thanks Chris 

I’m almost looking forward to it now! 😊

cheers

Greg 

User
Posted 28 Jun 2023 at 20:11

Hi Greg,

Really sorry to hear that.  What a roller-coaster ride of emotions.  Hope surgery will proceeded as planned.

Take good care of yourself.

Best wishes,

JedSee.

User
Posted 28 Jun 2023 at 20:56

Hi Greg,

Hopefully by now you’ll be all done and dusted🀞

Hope everything went well and your recovery is good! Looking forward to hearing you are all good!

Derek

User
Posted 30 Jun 2023 at 12:12

Glad that's all over. For the surgeons and medics, it's just all in a day's work. For the patient it is far removed from a normal day.

Dave

User
Posted 30 Jun 2023 at 18:47

Greg J,

I'm delighted to hear that it's all 'out' at last.

Very best wishes for a speedy recovery.

JedSee.

Edited by member 30 Jun 2023 at 18:47  | Reason: Not specified

User
Posted 30 Jun 2023 at 20:20

Gregg, pleased to here it went ahead after the delay. I had a similar issue with the drain leaking blood. Take it easy but keep mobile,no straining to pass that first motion. If the catheter makes the eye of the penis sore get some instilagel or hydrocaine, both available without prescription at most pharmacies except Boots.

Hope your recovery goes well.

Thanks Chris 

User
Posted 30 Jun 2023 at 20:45

Great stuff Greg, so pleased for you and all the best for a speedy recovery.

Derek

User
Posted 30 Jun 2023 at 20:59

Youve got there Greg. Well done my man. Time to get back to as close to normal as you can.

 

Slainte Mhath lad.

 

Jamie.

User
Posted 01 Jul 2023 at 07:06

Gregg,no personal experience of it, but I have seen it mentioned before and from what I remember it takes some time to clear.

Thanks Chris 

User
Posted 01 Jul 2023 at 09:10
Keep an eye on your temperature, if you develop any kind of fever or sudden pain get right back onto the hospital.
User
Posted 01 Jul 2023 at 10:03
HI Greg

Everyone is different in how the body reacts and you have to remember that it's a fairly brutal operation with the Da Vinci with all the tubes and pipes being pushed into your body and the CO2 inflation is quite significant - they release it after they are finished, it's the residual that causes the issues and irritates the diaphragm which radiates to the nerves in the shoulders.

Your body is reacting to the surgery with the bruising and as the nurse says, pretty normal in a small number of cases.

The high blood pressure is possibly down to you panicking too much - so you need to relax and chill.

Take your temperature every 2 hours to be sure and talk to the nurse again if it spikes but also keep drinking water - you need at least 2 litres per day.

User
Posted 01 Jul 2023 at 14:28
It really does sound perfectly normal - your body has gone through some trauma and it just takes a while to settle down.

I would suggest that your stress levels are high and you just need to take some time to relax and stop worrying - I know it's easier saidd than done but if you can find someway to take your mind off things then try and do that. Also make sure you are walking around every 20 minutes or so - even if it's just from room to room and keep drinking the water.

You should be on a daily anticoagulant injection (usually for 28 days) that will prevent strokes etc. By all means have a chat with your GP on Monday but I think you will find the same advice - relax and just let your body recuperate.

Take care mate.

User
Posted 01 Jul 2023 at 14:51

Thanks Steve

Yes I am on the daily injections. 
I think my other medical conditions, mainly my inflammatory arthritis, are adding to the pressure on my body from the surgery. 

It really is a bit frightening at the moment, with heart rate and blood pressure making me feel really ill all the time. I’m hoping it calms down in a few days. 
I think I will run it past my GP to see what he says on Monday. 

Thanks a million for the support mucker 😊

cheers

Greg

User
Posted 02 Jul 2023 at 22:33

Glad you’ve now had the surgery Greg. Hope things settle for you over the next few days. 
I had problems with the drain bag falling off after surgery. My bed covers in the hospital looked like there had been a major attack!

 

Ido4

User
Posted 03 Jul 2023 at 06:48

Hmm … Houston, we have a problem! 
I knew something definitely wasn’t right, I should always trust my gut instincts. 

I’m back in hospital again, through A&E this time. Blood pressure stayed low and heart rate was taking off like a rocket whenever I stood or moved.

Called 111 and they organised local Dr on call to speak to me. Ended up going to see him 1am Saturday and he took some bloods. Went back home and got a call at 7.30am .. “you have anemia, I’ve referred you to the surgery team in A&E, please get there asap. Your hemoglobin is 50% of where it should be”

So full day in A&E and many bloods and a CT scan later I’m in a bed on the surgical ward with a large hematoma in my pelvis. This caused the hemoglobin drop which caused the anemia which made me feel so awful.
I’m on a surgical ward as I guess they were going to open up again to see if they could stem the bleeding but I believe they think it’s stopped now so I just had a blood transfusion which will hopefully set me back on to better hemoglobin levels. I’m still quite dizzy and lightheaded though. 
I can’t lie, the pain in my abdomen, lower back, pelvis and groin is huge. I’m hoping to speak to a surgeon or urologist today to discuss how this happened, if it will fully resolve and how long it will take. 

I wasn’t sure if I should post my experience so far as it is proving to be a lot … lot harder than I imagined and I do not want to put people off from having it if it’s the right choice for them, but I think on the grounds of balance and transparency I need to show perhaps the other side of a RP. 

I still think it was the right choice for me and would not hesitate to choose it again if I had to relive it over. 

Hopefully things will improve as time goes by. 
cheers all

Greg. 

User
Posted 03 Jul 2023 at 08:01

Really hope things start to improve today Greg and that they get the pain and discomfort under control. My other half faces a RP soon (had op cancelled and now with strikes looming no idea when) but I am grateful for your openness because this reminds me that the op is not a walk in the park and is a major intervention and I need to be prepared to support him through  any outcome, hopefully positive but you never know…wishing you all the very best for a speedy recovery. 

User
Posted 03 Jul 2023 at 08:02

Gregg, hope things improve soon,at least you are in the right place. Absolutely right to report your situation, it is quite unusual but knowledge is always useful.

Take care Chris 

User
Posted 03 Jul 2023 at 08:45

Hi KD, as Chris says above, problems like this are very very rare. 

The gentleman who was in with me on the same day for his op, is absolutely fine and well on the road to recovery already. I’ve kept in touch with him and he’s doing well. 

I’m sure it will be completely the same for your other half. 

Apparently, the official medical term for me is, Little Bleeder!
 I’m sure I heard the nurses calling me that. Haha

I’m just the kind of person that bleeds badly, not sure why I thought this would be any different. I’m not a haemophiliac I just like to give it up easily obviously. 

I’ve had a brief discussion with the nurse and there is a suspicion that the anticoagulant injections may have caused it, nothing to do with the procedure itself. That makes sense and is already a recorded thing in medical history. 
I hope to know more later after speaking with the urologist 

Take care

Greg. 

User
Posted 03 Jul 2023 at 09:16

Hi Greg,

I’m really sorry to hear that you’ve had these issues but at least now you know why and hopefully you will be on the road to recovery soon. I’m also so glad you posted about the issue as so many people opt for the surgery thinking it’s a walk in the park, but it is MAJOR surgery. Most people I know in Maggies have not had such issues but they do have some long term issues with ED and incontinence.

I agree with you that you’ve made the right decision for yourself and All the best for recovery and look after yourself.
Please also keep us informed good AND bad.

Derek

User
Posted 03 Jul 2023 at 20:07

Hi Greg J,

So sorry to hear that things haven't gone well for you after your surgery.  I hope they can get the pain under control and that the bruising subsides.  I think you're in the right place in hospital and that your blood pressure and heart rate will stabilize very soon.

Very best wishes,

JedSee. 

User
Posted 03 Jul 2023 at 20:31

Thanks JedSee

I hope that by tomorrow my hemoglobin levels will be stable. They have started to rise so that shows that the bleeding will have stopped, I’m told….gulp. 😳πŸ₯΄

The nurses and all the staff at the hospital I am in are absolutely fantastic. I cannot thank them enough for the excellent care they have given me during my stay. Dealing with cancer is a tough enough battle as it is but coping when even the cure puts the boot in is definitely not an easy ride! 

I’ll never forget any of them … heck, I’ve got the scars to remind me πŸ˜‚

cheers

Greg  

 

Edited by member 03 Jul 2023 at 20:32  | Reason: Not specified

User
Posted 07 Jul 2023 at 16:10

Sorry to hear about your woes Greg, I hope things get better soon for you.

Derek.

User
Posted 07 Jul 2023 at 16:39

Greg, you are going through it. I did have fresh blood and clots hanging out of my penis and around the catheter after a simple dilatation. I was was kept in hospital for a few days, the only thing they actually did was flush the catheter.

One rare thing to be aware of is when they put the a suture through the catheter and accidentally stitch it to the urethra. It should be checked at the end of surgery to make sure it is free to move. Make sure you are hydrated before the catheter removal. The catheter should just slide out if it doesn't, insist on getting a urology surgeon to attend to you. Probably not for the same reason but my catheter got stuck on the way out, a quick yank and it came out. My surgeon is convinced the trauma was the cause of my stricture and they never solved the issue. It is rare.

Hope things start to improve soon.

Thanks Chris 

 

User
Posted 07 Jul 2023 at 17:56

Thanks Derek and Chris. 

I’m definitely going to mention all the problems to the nurse before she removes the catheter.

There seemed to be a break in communication between the surgical ward and the urology treatment suite as they knew nothing of the problems I’ve had as they called me to say you should have had your catheter removed by now. 

I would hate to think more complications arise from catheter removal so I may request to see the surgeon before they attempt removal. 

Thanks gents

take care

Greg. 

User
Posted 07 Jul 2023 at 19:04

Greg J,

So sorry to hear about your recent circumstances.  It sounds like hell.

My catheter was in for almost 3 weeks due to catching Covid in between surgery and planned removal (after 7 days).  The removal was straightforward - a very slight pull by the nurse, and it was out; no pain, just anxiety, followed by huge relief.

I can only really comment on the exhaustion.  Yes, I had that too after my surgery, but it did pass, and once the catheter was out, I improved quite rapidly.  I hope it will be the same for you.

Very best wishes,

JedSee.

User
Posted 07 Jul 2023 at 21:16

Thanks JedSee

Ive got what looks like clots coming down the tube tonight. I just pray that there aren’t more further up that could block the catheter again. 
i can’t face another 6 hour wait in A&E again 

How the medical staff in A&E cope I have no idea. So busy it’s just pure bedlam everywhere. The urology surgeon said he would not want anybody touching the catheter in A&E as they may do more damage and make things worse but I really won’t have a choice if anything happens over the weekend. πŸ™πŸ» πŸ™πŸ»

Tuesday can’t come soon enough. I’ve just emptied the bag and drinking as usual, waiting for the bag to fill again so I know it’s draining properly. 

Please …. Please don’t let anything else go wrong before Tuesday. πŸ₯ΉπŸ₯²

User
Posted 07 Jul 2023 at 23:35

Greg, I have a permanent suprapubic catheter and find I drain better when I am laying down. Keep up the water intake,in this hot weather urine output can go down. You probably don't need telling this but make sure the leg bag is below the bladder and the night bag is below the leg bag. Make sure there are no kinks and ideally the night bag should be supported on a stand.

Thanks Chris 

User
Posted 08 Jul 2023 at 07:04

I meant to say JedSee

What a sod catching covid in between must have been for you.

That’s been in the back of my mind over the past week, after so many hospital visits and sitting with a lot of people in A&E a few times.
I had all my toes crossed 😁 when I was there as I think catching covid would be the last straw! 

Cheers

Greg. 

User
Posted 08 Jul 2023 at 08:25

Greg, you don't need to be thinking of long term catheters just yet , in a few weeks things will have settled down and your will be back to your new normal. 

Catheter bags have changed since I started this journey over nine years ago, back then the bags didn't have an anti back flow arrangement. If the catheter blocked up you could lift the bag above the height of the bladder and urine would help move a blockage, probably not a good idea but it worked for me.

The permanent SPC does affect my QOL but it's amazing how we humans can adapt to a new normal. I much preferred carrying my urine inside my body rather than in a bag on my leg. Your comment got my brain whirring, I do miss just getting up and having a good long pee. One advantage of ED is not having to try and aim that upright morning glory down into the toilet bowl. πŸ˜ƒ. 

I like to know facts and data, I like to know where I am heading , even if it isn't a good place to go.

Hopefully the catheter removal we be straight forward but ,be prepared for the possibility it might have to be in a bit longer. If it does stop in a bit longer you won't be getting up in the night to go for a pee. 

My overnight urine production varies from 300 to 1500 mls the lower the volume the darker it is. 

Thanks Chris 

 

 

User
Posted 08 Jul 2023 at 08:50

Thanks for all your insights Chris. 
They’re really helpful, even to know that I’m not on my own and otters have got through complications and are on the other side 😊

My heart rate is still a concern. My resting heart rate is 80 now and when I stand up to walk around the house and garden it goes to 114. I have an appointment with my GP next week to discuss. I am still slightly anemic I know so I’m concentrating heavily on raiding my iron levels. It can take 2-3 months to recover from anemia so it’s head down and bash on with that one. 

I’m due in the hospital on Tuesday for removal but if I still have blood and clots moving down the tube I’m going to call them on Monday to discuss. I will ask if the surgeon can be present when I go so I can explain directly to him what has been happening over the past 10 days. 

Fingers crossed everything goes smoothly. 

I’ve not started my Tadalafil 5mg properly yet, which I’m also a little concerned about as I should have had a week under my belt by now. The urologists and surgeons didn’t think it was a good idea until the catheter is removed and there is evidence of good healing taking place. I’m just putting all my faith in their expertise and praying for the best outcome. 

Thanks again for all your input it really is appreciated. 
Take care

Greg. 

User
Posted 08 Jul 2023 at 09:29
The tadalafil is not essential and therefore the least of your problems- don't worry about it
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jul 2023 at 19:07

For goodness sake! 
I don’t think I can handle anymore of this. 

More blood down the tube tonight and the bag is very very slow to drain. 

Shall I just wait to see what happens? 

I can see me sitting in A&E for another 6 hours tonight. 
Never pigging ending. πŸ₯ΉπŸ₯²

User
Posted 08 Jul 2023 at 20:46

Hi GregJ,

So sorry to hear of your ongoing problems.  I know that it's easy for me to say this, but I do believe that it will get better, and probably quite soon.  Try to hang on in there.  Try to do anything you can to distract your mind while the medics sort it out.  We are all rooting for you.

Take good care of yourself.

JedSee.

User
Posted 08 Jul 2023 at 20:53

Keep Strong and Positive Greg, you can get through thisπŸ’ͺπŸ’ͺπŸ’ͺ

Derek

User
Posted 08 Jul 2023 at 21:00

Thanks Derek

Tuesday just cannot come soon enough. 
I really want to be back in the operating hospital to speak to surgeon and his team and try get things sorted once and for all. 

It’s do difficult being 2 hours away when they won’t really allow my local hospital to do anything major to sort my issues. 
I feel really helpless at the moment. 

Seeing the blood and the clots still coming down the tube, 10 days after the surgery is just so worrying. I dread to think what’s going on in the bladder!

I hate wishing my life away but roll on Tuesday

Thank you very much for everyone’s support 

Take care

Greg. 

User
Posted 09 Jul 2023 at 07:22

Thank you Peter

They removed my blood drain on the second day too, after it had been emptied twice since the op. It was still bleeding but they didn’t seem concerned, despite me showing the bruising on the second day.

I know the bruising is just superficial but it would have been an indicator as to how heavily I was bleeding internally! I wish it was checked sooner. 

When I say bruising I mean seriously major bruising, not just the kind you get at an injection site. The main one is on my RH side and is about 1 foot in length and around 10 inches high. It wraps right around my side. Another is on the LH side and is about 6 inches by 3 inches. More on my front around the camera hole near belly button around 4 inches by 2 inches. 

They all went completely black by the third day. When I was readmitted for the blood transfusion the nurses were coming in the room and asking to see the bruises as they hadn’t seen anything like it before. I should have been charging per view 😁

I am not on the anticoagulant injections. They were stopped by day 4 as it was thought that they were worsening or even causing the internal bleeding. 

I am moving as much as I can, to prevent any DVT or clotting. The first few days movement was extremely difficult and painful, I have to say it has improved now though I’m still completely exhausted and have quite a lot of pain in my abdominal region. I’m told this will continue for weeks until the hematoma has been absorbed by my body. 

I bought an Apple Watch to monitor my heart as since the bleed and the anemia my heart jumps 30 BPM just standing up. I’m also using it to track my steps and I did 3100 slow and gentle steps yesterday, just around the house and my small garden for some fresh air. I’ve no idea if this is enough steps or too many steps but it feels about the right balance of movement given my seriously low energy levels since the op. 

I’m hoping to be able to discuss all of this with the hospital on Tuesday when I go to hopefully have the bag removed. 

I did wonder if I was drinking too much. I’m drinking around 3 litres a day. I told one of the nurses this and she said that’s fine but mix it up with water, tea and fruit juice. I just have 2 cups of tea in the morning then just water the rest of the day. I could honestly murder a pint. 

I just pray that everything start to resolve itself slowly but surely and that these past days are forgotten in 6 months time when I’m striding naked down the beach! πŸ˜‚

I’m counting the minutes until Tuesday 🀞🀞

Take care

Greg. 

Edited by member 09 Jul 2023 at 07:39  | Reason: Typo

User
Posted 09 Jul 2023 at 09:23

I’m not sure about the ‘striding down the beach Naked’ Greg, unless you’re heading to Fuerteventura where anything goes. If so, I will see you there in 6 months(or before) and we’ll have a drink or three togetherπŸ’ͺπŸ’ͺπŸ’ͺ

Derek.

User
Posted 09 Jul 2023 at 09:45

This morning’s woes are something new!

The main wound above my navel has opened up through the night and has become quite “gooey” and wept!

It is also quite painful now too. 

I’ve just spoken to the sister on the operating ward and I’ve sent a photo for her to discuss with a doctor. 
May have to see a local out of hours doctor where I live as the operating hospital is 2 hours away. 

Oh joy of joys … it’s the gift that just keeps on giving. 

Cheers

Greg. 

User
Posted 09 Jul 2023 at 20:54

Well, another 6 hours in A&E. Wound cleaned and dressed and to keep an eye on it. 
It wasn’t fresh blood it’s back pressure from the internal bleed weeping through part of the wound that had opened up a little. 

You actually couldn’t make this up. Somebody pinch me to see if I’m dreaming! πŸ™ˆ

 

User
Posted 09 Jul 2023 at 21:32

Gregj, sorry to hear this ,as said you couldn't make it up. Hope things start to improve soon. Keep us updated.

Thanks Chris 

User
Posted 09 Jul 2023 at 21:46

Tomorrow will be a better day Greg.🀞🀞🀞

User
Posted 09 Jul 2023 at 21:49

Thanks Derek 

I’m dreaming of that pint in a week or two to celebrate. I can almost hear the bubbles in the glass πŸ˜ŠπŸ‘

Cheers

Greg. 

User
Posted 11 Jul 2023 at 20:21

Greg, pleased it went well. I was the opposite to you, I could walk without leaking, then when I stopped I would leak. I was lucky to recover my continence very quickly. I would just hang on a little longer when I got the urge to go. You no longer have your upper sphincter, so I am not sure where the pressure builds up if hold on too long. You certainly don't want to put any extra pressure on the new joint. 

You can expect a small amount of blood,a few clots, some bits of scab and debris over the next few weeks. Guys often report passing blood, when we ask questions quite frequently they have been doing too much.

Hope all goes well from now on.

Thanks Chris 

User
Posted 11 Jul 2023 at 20:24

Hi GregJ,

Congratulations - you've done really well to get the catheter out without too much grief.  If you were then able to travel for 2 hours without leaking, you're doing VERY well!

I had bad incontinence after the catheter was removed, but it's slowly getting better.  Have you been told to do Kegel exercises to strengthen the muscles?  There are phone apps you can get to show you how to perform them and to remind you when they're due (typically, three times daily).  Leaking when doing any activity can be a problem, but especially in the early days.

Best wishes,

JedSee.

User
Posted 11 Jul 2023 at 20:58

Thanks Chris

I’m not holding it until it causes any pain, I’m just trying to delay before going. I’m maybe trying to do too much too soon am I?

The small leaks come at the oddest of times when I least expect them. Very odd. 
I’ve read here many times that were all different, so it seems. 

There’s been blood twice tonight, only a tiny amount so I guess I just keep an eye on it over the coming days and weeks. Thanks for the reassurance  

I just hope that I can now start proper recovery instead of going back into hospital every evening with yet another problem. My GP rang today as he’s been on holiday for a fortnight and was catching up with what had been happening… I’m sure my recent medical notes gave him some interesting reading! 😳

Take care

Greg. 

Edited by member 11 Jul 2023 at 21:04  | Reason: Not specified

User
Posted 11 Jul 2023 at 21:31

I’m so pleased it all went well today Greg, now you can start to concentrate on your recovery!
I have no personal experience of recovery but speak a lot the guys in my Maggies Group about their recoveries and what I get from them is you need to be patient and take things slowly, probably even more so because you’ve had a hard time of it. I had lunch with one of them today who is 3 months down the line and he’s doing very well so hopefully you will be the same.

Onwards and Upwards(although that might have to wait a while🀣🀣🀣)

Derek

User
Posted 11 Jul 2023 at 21:38
Those night time pants are quite fetching aren't they :) I bought some cheaper ones and my wife pointed out that they had frills - they were unisex but certainly make a statement - Benny Hill comes to mind :)

If you are like me you will find sleeping to be OK - I wake up 2 or 3 times a night knowing I need to go so have a urinal bottle by the side of the bed. I swing my legs out to sit on the side of the bed, grab the bottle and put my penis into it and then stand up - flow starts immediately.

Over the last couple of nights (8 weeks post RARP) I am down to 2 times and last night was just 1 - so improving all the time :)

User
Posted 12 Jul 2023 at 08:45

Well, the first night didn’t go too badly actually. I’m amazed. 

I was strapped, padded and covered like an oven ready turkey (?πŸ€”) going to bed. I was in bed by 10.30pm , I stopped drinking at 8.30pm as I’d already had 3 litres through the day. 

I woke up at 4.50am to go to the toilet but other than that I slept pretty much right through and my padding was bone dry this morning. I imagine there might have been some tiny leaks but there’s still blood in my urine and there is no sign of anything at all in the night pants. 

The trip to the loo at 4.50am was quite heavily tinged with blood, which I was a little concerned about, but nothing anywhere near as much since that. 
I guess that is normal, even 13 days after the op?

 

I’ll keep an eye on it and I’ll mention it to my CNS if it continues or gets worse. 

All in all I think I’m quite happy with that for the first night …. Although, I’m often accused of being a pessimist… so there’s plenty of time yet!! πŸ™„πŸ«£πŸ€£

 

(I hope it’s ok to document my progress on this thread? I just want to use it as a reference to look back on as time goes by.)

Take care

Greg. 

User
Posted 12 Jul 2023 at 12:06
If you are lucky enough yo be prescribed tadalafil it is usually recommended to start taking it as soon as the catheter out. The tablets draw oxygenated blood to the area which helps speed up healing. You are very unlikely to have an erection but so what if you do - no harm will come to you. My husband had his first orgasm the day his catheter came out.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jul 2023 at 13:02

This is an excellent post Greg so please keep it going. It’s so important that others can see both the good AND the bad…and things DONT always go smoothly. Sometimes it’s more difficult to post when things are not going your way but I have found that it helps both me and others to be able to talk about it openly.
Even though it’s not really relevant to me I’ve been following your post with great interest.

it’s sounds like you have maybe turned a corner so let’s hope it keeps going🀞🀞🀞

all the best,

Derek

User
Posted 12 Jul 2023 at 14:15

Cheers Derek πŸ‘πŸ˜Š

 

I’m documenting each stage as I go through it so I can look back in the weeks and months to come and see how far I’ve progressed. 

As I said earlier I wasn’t sure whether to post the “bad bits” but like you I think it’s good to see a balanced picture with real world results. 

I do wish I was one of the few percent that sail through with zero problems and get back to their full normal life in a matter of weeks but …. This is the hand I’ve been dealt so I have to just get on with it. πŸ˜ŠπŸ‘

 

Cheers

Greg. 

User
Posted 13 Jul 2023 at 09:34

Another totally dry night, which I really appreciate. 

It seems if I’m sitting still, watching TV or laying on my back to sleep, there is zero leakage. I can cough, sneeze and stand and walk a few steps no problem but then say I’m making a cup of tea, half way through the kettle boiling there will be a little leak. Seems so random really. 

I’m using two pairs of disposable pants per day, I could probably get away with just using one but I like to feel fresh so I wash often and change the pants half way through the day. I got the pants from Age UK, only £4.50 for a pack of 8 (9 for the medium size) so a great price. They are amazingly absorbent and feel dry instantly after a small leak. 

I’m two days post catheter removal now so although my ridiculously impatient mind is telling me I want to be perfectly dry now, I keep telling myself I should be happy with where I am right now. 

Called my main contact nurse to check I should definitely be on the Tadalafil tablets now and waiting for her to call me back after checking with urologist. 


My abdominal muscles still hurt and ache but I guess this is just normal healing from the surgery. As Stephen Fry said after his RP … you’ve been stabbed 5 times, all be it under anaesthetic, you’ve still been stabbed! 😊

After all said and done I’m definitely in a far better place than I was even just last week after the second hospital stay for the internal bleed. 

Onwards and hopefully “upwards” to infinity and beyond! πŸ˜ŠπŸ‘

User
Posted 13 Jul 2023 at 10:34

Your doing great Greg and good luck with the ‘upwards’ bit.

I got a text this morning from my pharmacist saying that my ‘wonky Willy’ corrector device(SOMACorrect) had arrived so I’ll be doing a fair bit of pumping in the hope I can keep it ‘straight up’ too!😊

you’ve just GOT to laugh….or cryπŸ˜ͺ but laughing is better for the soul and your sanity!🀣🀣🀣

User
Posted 13 Jul 2023 at 19:38

Hi Greg J,

After all that you've been through, you're doing amazingly well.  Long may it continue.

Best wishes.

JedSee.

User
Posted 15 Jul 2023 at 15:24

Greg, I am never sure about saying normal, it is frequently mentioned and I was still passing a small amount of blood, scabs and debris at least six weeks after surgery. A few weeks after surgery I also passed a kidney stone, that got my attention.

Brown blood is again frequently said the be okay, and bright red blood should be checked out.

Thanks Chris 

User
Posted 15 Jul 2023 at 16:05

Thanks Chris

Yeah you’re right, I suppose there is no real normal in this game as we’re all so different. 
Saying that I am “glad” that it’s not just me and that others have had similar. 

I’ll keep an eye on it and if it continues or gets worse I’ll give my CNS a call. 

I feel a bit abandoned after my surgery to be honest. The only appointment that I have now is  a phone call with the surgeon at the end of August. I guess I just keep my head down and keep going and if anything happens I just call the urology department at my local hospital. 

Take care

Greg. 

User
Posted 15 Jul 2023 at 17:49

TBH Greg, I think many of us feel a bit abandoned after treatment is finished. I know I do, but I think youve got to be proactive in addressing any issues you have to get them sorted.

You know about my issues with Peyronie’s disease, I would have waited probably at least a year to get an an appointment with a Specialist on the NHS, which is why I decided to go ahead and pay privately to get a diagnosis…and now I’ve got what I need to try and get it fixed….on the NHS🀷🏼‍♂️

Also my joint stiffness and aches were really beginning to really affect my QOL…every joint in my body was affected. I searched high and low for a solution as it was getting to me. I’ve come to the conclusion through my own research that the joint ache is caused by muscle loss because of this damned HT treatment. I was already going to the gym but my son told me you have to push yourself as far as you can to build muscle, so it’s not reps that count but the weights you’re lifting. Also asking for advice on here someone mentioned swimming…so I’m now doing that several times a week. I can honestly say I am really beginning to feel a difference. In my view anyone on HT should be given advice and even prescribed a gym membership along with a strict program to adhere to to prevent muscle loss. if you’re in a manual job(we have a landscape gardener in our Maggies Group) you’re  probably working your muscles every day…but if your retired like me maybe not. I was cycling a lot but now I think that maybe that I was exercising wrong so hopefully this new regime will help me.

so, I’m going to keep pumping and pushing in the hope it’s sorts both these issues. I can live with the rest😊

So, if you’re worried about ANYTHING, do you own research and try things out to help. Maybe it shouldn’t be like this but that’s what I’ve found. 

All the best…and keep smiling, it helps immensely 😊

Derek

Edited by member 15 Jul 2023 at 17:55  | Reason: Not specified

User
Posted 16 Jul 2023 at 00:08
I think you have unrealistic expectations. Until recently it was standard to get a starting sicknote of 8 weeks after RP and then another 4 weeks if you needed it. Recovery after abdominal surgery uses approx 4700 kcalories per day - far more than you would normally consume so the body has to use up reserves - that's why people feel so exhausted for a while afterwards. By 6 weeks, some men are moving around freely and may be back up to a few kilometres walking but for many, just getting round the block a couple of times is an achievement!

If you try to do too much too soon, you can delay your recovery. The risk of hernia is also significant. Try not to stress so much; it isn't very helpful.

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

User
Posted 16 Jul 2023 at 08:33

Thanks Lyn,

To be fair I don’t have any expectations as I have no idea what is normal, abnormal, right or wrong. I’ve never done anything remotely like this, I’ve never even had minor surgery, never mind major surgery. 

I think that’s why I’m always fishing for info, confirmation and reassurance.

 

At the moment I’m just walking around the house and garden.
I guess it’s a bit more complicated for me than a normal recovery because of the anemia. It’s making me exhausted a lot of then time, (standing from sitting can send my heart rate from the 70’s up to the 110’s and 120’s)

 
Also the type of inflammatory arthritis I have plays a major role in fatigue levels. Now recovery from surgery on top is like “inflammation overload!” … cheesus! Gimme a break! πŸ₯΄

 

From the info and responses I’ve had it sounds like I’m heading in the right direction at least so I’ll go with that. πŸ˜ŠπŸ‘

Thanks

Greg. 

User
Posted 16 Jul 2023 at 13:56

I would say you certainly ARE heading in the right direction Greg. When you think where you were after surgery it seems to me you have done very well.
I hope nobody thinks I was suggesting you start running marathons(or doing anything physical for that matter) when I said I think you need to be proactive with your recovery! What I meant that before and during treatment I was given lots of information, but since RT finished I feel I have been left to myself to deal with the side effects of the treatment. Only by being proactive in finding information and taking appropriate steps to aid my own recovery have I managed to deal with some of them. This forum and Maggies have been an immense help in doing this.

I obviously can’t speak from personal experience, only from the many guys I have met through Maggies that have had surgery and they ALL say the same…you need to be patient and not expect too much too soon,.

I’m sure you will begin to see real improvement soon.

Right, off to watch the tennis…come on Carlos!

Derek

User
Posted 16 Jul 2023 at 15:51

"I think that we should perhaps be given comprehensive literature packs about our post treatment recovery, highlighting things we need to watch for, things that will happen, things that could happen and perhaps even “road markers” to let us know we are heading the right way"

It varies from hospital to hospital. Some hand out a post-RP info pack or paper copies of the PCUK toolkit, some give patients a leaflet with the website address snd phone number to order a copy of the toolkit directly from the charity, some just advise men to come to this website and some don't do anything at all You can download the individual sheets from the main PCUK website.

Edited by member 16 Jul 2023 at 15:51  | Reason: Not specified

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

User
Posted 17 Jul 2023 at 19:05
You lucky lucky b_gger :) :)

Well done, unfortunately I will never get another one unless anyone who has not had nerve sparing can tell me otherwise.

Mind you, I did find this awesome willy massager that works on floppy willies.

Did they tell you that your op was nerve sparing?

Well done!

Steve

User
Posted 17 Jul 2023 at 20:41

Hi Greg J,

Well done you πŸ˜€.

Yes, buy that extra Lottery ticket!

Best wishes,

JedSee.

User
Posted 17 Jul 2023 at 22:11

That must have been quite pleasantly surprising for you Greg after all you’ve been through.

Congratulations ….and onwards and upwards seems VERY appropriate! 🀣🀣🀣

as my Pharmacist said to me as he handed over my Viagra ‘All the best!’😊

Derek

User
Posted 19 Jul 2023 at 14:23

It's normal. A lot of flesh has been cut, burnt and bashed around. The brain can't quite process where the pain is coming from as the nerve endings start to heal.

Pain is also your body's way of telling you if you are doing too much. 

Edited by member 19 Jul 2023 at 14:24  | Reason: Not specified

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

User
Posted 22 Jul 2023 at 20:35

Hey Greg first of all thanks for posting your journey. I’m new to the community and found your information and the replies very helpful. Sorry to hear you had some additional complications - hope all ok now  

I’m just over 2 weeks post op. I had my catheter and clips removed last Monday. 
Plenty of pads being used still but last night I was relatively dry. 

I was interested in this particular post on the pain. I’ve had two days (including today) where the pain was very bad. It’s in the ‘undercarriage’ or perineal? area and just feels like the whole area is ‘raw’. That has lead to awful stinging pain in my urethra today. I’m not used to having constipation and that seems to have added to the discomfort and an inability to pee. 

Had blood on my pad for first time today. 

I checked in with my nurse yesterday and she explained that such pain is normal and it’ll ease off eventually. I guess it’s part of the healing process. 

I’d agree with many of the posts about taking it very slow and listening to the body signals. I went back to working from home on Tuesday and Wednesday for a few hours each day and hit a wall on Thursday.


But I always think back to the fact that we are lucky that surgery was an option. Small price to pay I feel. 

Nice to hear from Lyn that we are burning 4K calories a day while healing! Silver lining! 

Stay Strong 

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 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 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 17:04

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 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 21:52

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 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 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. 

Show Most Thanked Posts
User
Posted 06 Apr 2023 at 14:08

Your consultant sounds great and very measured. I hope all goes well for you. 

Ido4

User
Posted 06 Apr 2023 at 15:34

Thank you Ido

The previous consultant I saw, who gave me the diagnosis, was good but quite “clinical”

Todays was excellent with his bedside manner. A very personable and human individual. I guess they have different roles in the department based on their individual strengths?

He definitely gave me a little more confidence today, to help me tackle this head on. I’m grateful to him for that. 

Stay well

Greg. 

User
Posted 06 Apr 2023 at 16:11
Excellent! Most people feel much happier once there's a definite plan it place. Takes away a lot of worry and uncertainty. Onwards and upwards!

Cheers,

Chris

User
Posted 06 Apr 2023 at 16:36

Thanks Chris

I think it does, it feels like something proactive is happening. 
All the best 

Greg. 

User
Posted 06 Apr 2023 at 18:00

Greg, I’m so pleased for you, and your consultant sounds like a really good one…it makes such a difference when they take their time and show some empathy, which is sadly lacking with many of them.

I hope the surgeon you see is equally informative and will allow you to make the best decision for YOU.

Once you’ve made your choice I am sure you will feel MUCH better.

Derek

User
Posted 06 Apr 2023 at 18:02

What a brilliant post Greg. Agree with Ido, your cosultant seems to be bang on and exactly what was needed.The turning of a corner after diagnoisis , for me, was almost certainly my deciding on which treatment and way forward.

My operation was a breeze mate. In on the Tuesday morning, home on the Wednesday afternoon. Catheter removed 9 days later with no issues and 100% continence.

ED naturally follows and almost 11 months on, im improving each day. It was around the 8 month mark that I started to feel proper progress. I had 80% nerve sparing.

My histology was as good as I could have hoped for, with negative margins and no breach. All the same as biopsy had indicated. G3+4 and T3A. Last week I had my latest undetectable PSA.

Naturally this site is not a place Im comfortable being hugely positive in, given some of the brave super souls that are among us here whos prognosis isnt as positive.

Genuinely wishing you all the warmth for your coming months mate. Oh and if its any help, I still have half a dozen Instillagel syringes that may or may not be of use to you. Just pm me your details and I will happily forward them to you.

Jamie.

 

User
Posted 06 Apr 2023 at 18:17

Great that the bone scan was clear. What a relief that must have been. 

User
Posted 06 Apr 2023 at 18:26

Thank you Derek

I already feel a little happier that things are moving, the rabbit in the headlights feeling has subsided, at least a little bit anyway. 
look after yourself 

cheers

Greg

User
Posted 06 Apr 2023 at 18:34

Thanks Jamie

I’m so glad your journey is going smoothly.

I know exactly what you mean about being overly positive, I’d hate to think I could upset someone, but when I first joined here all I wanted to read was positive stories. 
The bravery of some of the gentlemen in this community, that are in a much worse position than I am, leaves me in awe every day and their triumphs and wisdom fills me with hope and helps me to accept what’s happening.

I tip my hat to everyone here. 

I know that I’ll have some stumbles on the way, the first of which being that I may not be able to have surgery after all, but I feel supported by a team of people in the hospital now.

Take care

Greg. 

User
Posted 06 Apr 2023 at 18:38

Thank you Paul

It was a huge relief and felt like really good news, for a change. 
Rock on 🀘 😊

take care

Greg. 

User
Posted 06 Apr 2023 at 20:09

You have the two most important things in place: a plan, and a consultant in whom you have confidence. You are good to go! 

Best of luck

User
Posted 06 Apr 2023 at 20:29

"Naturally this site is not a place Im comfortable being hugely positive in, given some of the brave super souls that are among us here whos prognosis isnt as positive."

Lordy, if we didn't have some of the positive stories, everyone would just give up the minute they were diagnosed. There is a huge difference between a stoey of a good outcome and a post which denies the possible risks. Don't ever be reluctant to tell us the good stuff!

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

User
Posted 06 Apr 2023 at 20:31
I am pleased that you have a plan Greg - if you were my brother or partner, I would have been saying go for surgery.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Apr 2023 at 20:41

Thanks olefogey 

Fingers crossed it goes smoothly from here🀞 

take care

Greg

User
Posted 06 Apr 2023 at 20:51

Thank you Lyn

I think I was always going to go the RP route, as that was my initial gut feeling straight after diagnosis. It’s good to hear someone else say they think it may be the correct decision for my situation. That’s basically what the urology consultant said after we’d made a decision. 

My other health conditions are still a concern to me to be honest but I really hope that rheumatology can help me get through this time. 
This evening my arthritis is flaring really quite badly, but I hope to get a steroid injection early next week to keep me going. 

Take care

Greg. 

User
Posted 20 Apr 2023 at 21:12

Met with the surgeon today. He was a nice guy to speak to and although I had a whole page of questions he had already answered 90% of them in his “opening speech” when I first went into his office. 
He went through all my files again, pulled up the MRI’s and went through each lesion in the prostate, it’s size, position and likelihood of capsule breach. 


His gut feeling was that it shouldn’t have breached the capsule yet and thinks my T3a diagnosis will ..or could (of course, no guarantees like Del Boy) be downgraded to a T2. 
At one point he ruminated on active surveillance but only for a matter of 10 seconds or so then discarded the idea and said active treatment is the way to go.

He said although the biopsy showed low grade it is still classed as high risk because of the position of the larger suspect lesion. He did say that it is in a difficult position so the biopsy may have missed some of the cancer cells so the Gleason score may yet be increased.

On a plus note he showed me the position on the MRI pictures and it is at the top of the prostate so he was sure that full nerve sparing would be possible. He also measured, on the screen, the size of my “thingsme-what’s-a-jigg” … not a euphemism!, I just can’t remember what biological term he used for the particular part of my pelvic floor (sorry), and said that in his experience it bodes well for a reasonable return to continence after surgery (again, no guarantee of course).

I asked about my other health conditions and whether they would exclude me from having a RP, in particular my large hiatus hernia. He did not think it would be an insurmountable problem and that the anaesthetist would be made aware and would pay close attention to stomach issues during the op (as in matter entering the lungs). He said likely with the use of PPI meds (which I’m already on) and a stomach “cuff/tube” 

All in all I felt more positive after speaking with him. I have to return soon for the pre-op assessment and if I pass that then it can be organised within the following 4-6 weeks. 😳 All a bit sudden but I suppose better that than worrying about it for months on end whilst waiting.

The hardest part about the day was the 2 hour drive there … and the 2.5 hour drive back. I took a left out of the hospital instead of a right and ended up nearly in the middle of town through heavy traffic. Satnav tried to take me up several closed roads but I eventually found the way out of town….there was one point that felt like driving round Le Arc de Triomphe!….but I just shut my eyes and went for it! πŸ˜‚

Cheers all, take care

Greg.

 

Edited by member 20 Apr 2023 at 21:15  | Reason: Typo

User
Posted 20 Apr 2023 at 21:45
All sounds positive, Greg. Glad to hear there's a plan!

All the best,

Chris

User
Posted 20 Apr 2023 at 22:02

Thats really good Greg, it makes such a difference when someone takes time with you…this was sadly lacking for me.

good luck with your choice….it will be a big weight of your shoulders when you’ve made it.

Derek

User
Posted 21 Apr 2023 at 03:27

This sounds like a great and positive meeting Greg.  I am sure your surgery will go well, sounds like they are communicating well and taking your own needs into consideration. 

Best wishes

Michael 

User
Posted 21 Apr 2023 at 09:00

Hi Chris, Derek and Michael

Thank you for you encouragement, it means a lot. 

Take care gentlemen 

Greg. 

User
Posted 19 Jun 2023 at 09:48

Hi all

Hope you’re keeping well. 

Well I’ve finally got my surgery date of June 28th. 😳


The anxiety is really starting to ramp up now I have to say. Not because of the surgery I don’t think, more a general anxiety about hospitals and the fact I’ve been lucky to never have had a general anaesthetic before. 

Any tips, advice or wise words from experience would be gratefully received. 😊

Cheers

Greg. 

User
Posted 19 Jun 2023 at 11:54

Same as you, never been in Hospital for anything other than a few stitches. I had no idea what to expect. But the clinical staff really do lead you through the process on the day.

Having the GA injected and going to sleep is not like it's shown on TV. "Count backwards" etc

Mine was right Mr X I am just going to give you something to help you relax and bang that was it, out for count. Probably 4 hours in fact. Next thing I knew I was in the recovery ward asking to get up since I needed to go to work... I really must get my priorities right.

 

User
Posted 19 Jun 2023 at 12:24

Thanks Jim

I hope that’s the same for me, lights out before I know what’s happening.
I guess it’s not the op I should worry about as I’ll not have a clue what’s happening… it’s the years recovery afterwards I should be concerned about…., 😳πŸ₯΄ 😊

Cheers

Greg. 

User
Posted 19 Jun 2023 at 14:50

Best of luck! I had my op just after Easter and went in feeling fit and well but knowing I would feel awful afterwards! It’s the 1st time I had any form of anaesthetic and I must admit it was a wonderful feeling suddenly going off and then waking up thinking where the hell am I! There’s a thread from a few weeks ago called practical advice before surgery which covers many points. I just took in change of clothes (loose baggy ones) some snacks phone and charger. Before op suggest you get personal grooming sorted - haircut toe nails etc as it would be  6 weeks or so before I could get out to have my hair done and bend down to cut toe nails! Finally take it easy and be patient remembering everyone is different. 

User
Posted 19 Jun 2023 at 15:00

Thanks for the tips Mgor 

I want it to be all done and dusted..whilst at the same time wishing it would all just go away! 
Stressed and confused I think. πŸ₯΄πŸ˜Š

Cheers

Greg. 

User
Posted 19 Jun 2023 at 15:55
I am sure that everyone is different but I went in freaking out about it - thinking the worst things that could happen - and none of them did!

I can't say exactly that it was an anti-climax because it's serious stuff but it was about 10% of what I feared.

Walking into the theatre is daunting but lots of smiling eyes (I am sure they were really smiling behind their masks). Lay on the bed and breath into the oxygen mask which is quite hard to do and then the last thing I remember was a nurse with the prettiest blue eyes and then bang, I'm gone.

I wake up (apparently) 5 hours later in recovery with no pain but a couple of inflating devices around my legs that would stay there for 24 hours. After an hour or so I am wheeled back to the ward and I just sleep on and off until tea time. Given a full meal and no signs of being sick or anything.

Nurses pop back in every hour or so to check on temp, blood pressure and the state of my urine bag - still no pain. Manage to get a couple of hours of sleep that night.

Next day the shoulder pain started which is a side effect of the CO2 gas they use to inflate your abdomen. It's the most painful part of the procedure and you will need some good painkillers so don't let them fob you off with a paracetemol!

The catheter is awkward but unless you catch it wrong it's not painful - ask them for someway to fix the pipework to your leg to stop it swinging about.

You will be up and walking around the day after the op and probably asked to shower and then released home. No driving with the catheter of course.

You will have prescriptions for day and night urine bags, painkillers and daily anti-coagulation injections - get some antiseptic solution as well as you need to keep the catheter sterile clean.

That's about it - the wounds heal after a few days, you need to have a bowel movement within 2-3 days of getting home and you need to take things steady for a couple of weeks - as the wounds heal quickly it is easy to forget that you have had some serious internal surgery.

Yep, about 10% of what I imagined was going to happen :)

User
Posted 19 Jun 2023 at 16:04

That’s brilliant, thanks Steve. 😊


I was/am worried about the CO2 as I have quite a bit of abdominal pain which is being investigated by gastro, after I’ve recovered from the op. (Had colonoscopy and gastroscopy but no clear findings yet) .. so I was/am concerned that the abdominal pain will be unbearable after the op. If it’s shoulder pain then at least I’ll be able to differentiate between the two … if you know what I mean. 

One of the (many) things stressing me out is the hospital is 2 hours away from where I live and I have to check in at 7am! 
I’m going to stay in a local Travelodge the night before I think, to make the logistics a bit easier and hopefully remove some of the stress of the morning. 

Thanks again for sharing your experience, it really helps. 
All the best

Greg. 

User
Posted 19 Jun 2023 at 16:27
If you have any questions then either post or message me and I can tell you my experiences - now 5 weeks post RARP.

I was fortunate that I was #1 for the day at 8am in theatre so they had me in the night before but yes, staying local to the hospital sounds like a good idea but I doubt you will sleep much unfortunately - but there really is nothing to be concerned about. Just remember not to eat or drink after the allotted time but if you are staying in a Travelodge then that's not going to be difficult :) :)

I had zero abdominal pain - just the shoulders and in my case my back as I have some arthritis in my back and side sleep but had to sleep on my back for 3 days.

Keep smilin'

User
Posted 19 Jun 2023 at 18:36

Haha cheers Steve. 

Yeah, I’ll be having an evening meal before I check into the Travelodge!

Got stop eating by midnight but I never eat after about 9pm anyway so hopefully it’ll all work out. I was wondering about sleep the night before, in a different bed as well but at least I’ll be “resting” if nothing else. 
Thanks for the encouragement πŸ˜ŠπŸ‘

cheers

Greg

User
Posted 22 Jun 2023 at 10:33

Great you have a date now Greg. I was nervous about the general anaesthetic too but the team in the anaesthetic room were brilliant at reassuring me they would look after me.

I knew I had to have the treatment so just placed my faith in the team. 
I came around very gently after the anaesthetic and was looked after by a great team in the high dependency unit until I was moved to a ward.

The hospital teams are expert in this.

At one point as I drifted in and out of a very pleasant sleep I realised that one of the nurses in the high dependency unit was the daughter of a neighbour of ours. That was very reassuring!

Wishing you all the best for the 28th.

Ido4

User
Posted 22 Jun 2023 at 17:42

Hi Ido4

Thank you for the reassurance. 😊

I’m definitely getting more nervous as the time approaches but you’re right, I’ll just put my faith in the wonderful staff that work in the NHS. 
Modern day heroes one and all. 

I hope once I’m there and speaking to them it will feel reassuring and things will happen quickly and automatically so I won’t have too much time to dwell. 😊

 

Thanks again and take care

Greg. 

User
Posted 22 Jun 2023 at 19:38
:)

You will be back on here in a couple of days saying "why was I worrying about that" - really, it will be a lot less than you are expecting.

See you soon!

User
Posted 22 Jun 2023 at 22:50

Cheers Steve πŸ‘πŸ˜ŠπŸ‘

User
Posted 27 Jun 2023 at 20:28

Well, it’s getting closer 😳😳🀒

Sitting in a Travelodge room … bored, bored, bored … 

Just sitting thinking about tomorrow morning. Up at 5am to get to the hospital for 7. 

Sure I’ll be fine once I get into the hospital and talking to the team but at the moment I’ve just got anxiety and nerves rolling around my noggin. 
Hope I get some sleep at least. 

See you on the other side. 
Cheers

Greg. 😬

User
Posted 27 Jun 2023 at 21:13

Bored in a Travelodge!  I was expecting an account of beyond infinity.

I recall sleeping from 9am to Noon.  Being woken for 10 minutes and put back to sleep for 4 hours when a ward bed became available.   Then I didn't sleep until the following night for some reason but I was up and about inspecting the ward after they removed the drip mid morning.  I guess you could be home Thursday or Friday but with a 2 hour trip are you being driven?

All the best, Peter

User
Posted 27 Jun 2023 at 21:13

Travelodge, definitely boring. Time to go for a walk I think. Good luck, report back when you're up to it.

Dave

User
Posted 27 Jun 2023 at 21:19

Haha infinity starts … tomorrow.. but tomorrow never comes .. so hopefully I can give a small update on a near future and follow up with the infinity details .. later πŸ˜‚ … I don’t think it will involve a travelodge ever again .. hopefully 😁

I’m being picked up both ways Peter.

They say if all goes well I should be out on Thursday, sometime. I know a few guys that have been to the same hospital and all but one got out the next day. One had to stay an extra day because he was a little dehydrated. 

I’ve got everything crossed that it all goes smoothly.

cheers

Greg

 

User
Posted 27 Jun 2023 at 21:21

Thanks Dave. 

Yeah, quick walk then bed I think. 
I will report back once all done and dusted … and hopefully at home having a nice relaxing and unstressed cuppa πŸ˜ŠπŸ‘

cheers

Greg. 

User
Posted 27 Jun 2023 at 21:23

Hi Greg,

Hope all goes well.

Best wishes,

JedSee.

User
Posted 27 Jun 2023 at 21:24

Thanks JedSee

πŸ˜ŠπŸ‘

cheers

Greg. 

User
Posted 27 Jun 2023 at 22:51

Gregj, strangely I can think of worse reasons for being in a travel lodge. I love the whole general anaesthetic experience. I had the extra night in hospital, only because the nurse said don't get pressured into going home early. Have fun.

Thanks Chris 

User
Posted 28 Jun 2023 at 05:24

Haha thanks Chris 

I’m almost looking forward to it now! 😊

cheers

Greg 

User
Posted 28 Jun 2023 at 08:28

Hi Greg

I was put out the weekend,try the 10 second challenge if the room has a clock above the bed where they put you to sleep,I never seem to see it out

Enjoy the ride phil

User
Posted 28 Jun 2023 at 09:12

Cheers Phil. 

10..9..aaaayyy…zzzz 😁

User
Posted 28 Jun 2023 at 09:15

Woahhh. Hod the bus!

Brakes put on proceedings. Anaesthetist is not happy with bloods and ECG from pre-admission. 
I was supposed to be in by now but they’ve swapped me to later today and taken more blood tests to try see what’s happening. He thinks it may be a thyroid function problem. 

Oh well, time for a sleep then, to make up for the 2 hours I got last night. 
cheers

Greg. 

User
Posted 28 Jun 2023 at 09:32

Not good ☹️

User
Posted 28 Jun 2023 at 20:11

Hi Greg,

Really sorry to hear that.  What a roller-coaster ride of emotions.  Hope surgery will proceeded as planned.

Take good care of yourself.

Best wishes,

JedSee.

User
Posted 28 Jun 2023 at 20:56

Hi Greg,

Hopefully by now you’ll be all done and dusted🀞

Hope everything went well and your recovery is good! Looking forward to hearing you are all good!

Derek

User
Posted 30 Jun 2023 at 11:27

Hi all

Well that’s that then! 

The anaesthetic, which was one of my many initial fears, was brilliant actually. Haha.
He was chatting away, as he put the cannula in.

Then he said, “this is just some pain killer, nothing to put you to sleep yet. Bit of a cool feeling up your arm. Right, now this is the stuff that puts you to sleeee…..”

Cue waking up in recovery, constantly trying to remove my mask, being gently told to leave it alone … then trying to get out the bed .. I really need a wee! You’re fine, you’ve got a catheter fitted. Hand pulled away and covers tucked in again. Warm blankets all over me.. it was actually lovely as many have said. 

Back on the ward by 7pm. No pain at all really. Very tired of course and woken up every hour until 2am for blood pressure check. 
Apparently I bled a lot and they did fit a drain which needed emptied twice. 
Surgeon said I was just a bit “gooey” … who’d have thunk that was a medical term. It came out yesterday and it had leaked quite a lot, quite a bit of blood on robe and bed, which was a surprise. Sister told me to stop being a drama Queen… it’s probably only about 50ml … to which I suggested it might be just 50ml to you but it’s a bloody armful to me! … like she won’t have heard that hundreds of times. 
 
 I only got 2 hours sleep the night before the op and the night immediately after on ward, we had a very serious snoring problem. Like sounds ive never heard before! 😳

So last night I spoke to the night nurse and she found me an empty day treatment room so I was wheeled in there and the door closed. Absolute bliss! Slept like a baby. 
Feel much more human today and getting discharged very soon, as soon as my lovely lift arrives. 

Surgeon said operation was full nerve sparing so fingers crossed I’ll be “up and running” in 1-2 years  

Pathology report about 3 weeks away he said so toes crossed we get clear margins  

Still a lot of pain from the CO2 but trying to stand and move about as much as possible so very slowly it’s “peeping” out 😳πŸ₯΄

I still don’t know how the gas is pumped into the abdominal cavity yet ends up in the intestines and colon…does it just get absorbed through?

So all done, definitely not as bad as I thought it was going to be, especially after I was educated by the warriors on here who’ve been there before. 😊

Quite stiff, a little tired, leaning over a lot to try to let a “peep” come out without pushing πŸ˜‚ … but all in all not bad at all. Definitely nowhere near as bad as I thought it was going to be. 

I hear that having to have a drain is very rare nowadays so most people will sail through it without problems.  I do like to make life as complicated as I can … it seems! πŸ™ˆ

Take care all and thank you for the support  

All the best

Greg 

 

 
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