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GregJ’s Journey - To Infinity And Beyond!

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User

Posted 01 Jul 2023 at 15:28

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 15:51

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 23:33

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 07:48

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 09:01

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 09:02

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 09:45

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 10:16

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 10:31

Hi Decho

As you know I mulled over the treatment choices for a long time and yes I think this was the right one for me.
It felt the right thing to do given all of my other factors (age, family cancer history, other medical conditions) and as I said I would decide the same way again if I had to.

Everybody has to do what’s right for them and 99.9% of people will sail through it no problem, I’m sure.

Onwards and upwards for me now I hope.

Or even … infinity and beyond! 😁

Cheers

Greg.

User

Posted 03 Jul 2023 at 10:38

If you’re needing cheered up Greg you might like to read my latest post of my journey thread for a little light relief….but watch and not laugh too hard!

User

Posted 03 Jul 2023 at 16:30

Interesting you must have had this when you were discharged given the evidence of your heart rate? Did they take meaningful observations before you were discharged? Did the nurse not notice your palour!

User

Posted 03 Jul 2023 at 17:30

I showed the bruising but it’s not the massive visible bruising that caused the problem. It’s the internal invisible.

I stayed an extra night so the blood tests were taken on the day I was supposed to be leaving. The usual OBVS were done before I left and they were all normal. The BP issue and pulse didn’t start to kick in properly until I got home so I’m guessing it was a slow bleed.
Then the next day it had bled enough to send me into troubled waters.

Perfect timing from my weird body again. 🥴☹️

cheers

Greg.

User

Posted 03 Jul 2023 at 21:07

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 21:31

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. 😳🥴

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 😂

cheers

Greg

Edited by member 03 Jul 2023 at 21:32 | Reason: Not specified

User

Posted 04 Jul 2023 at 17:41

Finally back home.

Still in a heck of a lot of pain where the internal bleeding was. The massive bruises on the outside, which are now nearly jet black, have nothing compared in the way of pain.

I just sat in the chair at home and fell into a deep sleep straight away. Basically I feel like I’ve been hit by a bus!
I’ve just got up to walk around and things are still very precarious, strength and movement wise.

How far should I be walking now?
Is there a step suggestion?

I didn’t want to sleep as soon as I came home but biologically speaking I had no control in the situation today. I have not slept properly in hospital since the surgery last Wednesday.
The one night I had at home I only got a few hours as the pain and racing heart kept me awake with worry. I really should have called 111 sooner but I thought I was just being a wimp after the surgery and just telling myself to get on with it … whilst slowly running out of blood 🩸 🩸 🩸

I am still anemic, have a slightly elevated heart rate and (according to a surgeon in A&E) still have the classic symptomatic “whoosh, whoosh” in my ears with every heartbeat. I’m still totally exhausted too but I am very conscious of needing to move.
They have stopped my 28 days of anticoagulant injections, after I only took it for 4 days as there was a feeling that these may have aggravated, if not caused, the bleed. So I’m now paranoid that, knowing my luck, …. DVT here we come! ☹️🥲

Thanks all

Greg.

Edited by member 04 Jul 2023 at 17:46 | Reason: Typo

User

Posted 07 Jul 2023 at 16:23

It just seems to be never ending!

My catheter removal date was extended by a week because of the extent of bleeding that I had post-op. I spoke to the hospital to get a new date and they said change the day bag in the meantime.
I changed it … and nothing drained for over 3 hours! Eventually it did star to drain but very slowly.

Yesterday I went for a bowel movement (apologies for the graphics but no use beating around the bush with these things is there!) and after sitting for a while, a full urination exited around the catheter tube! Fresh and bright red blood also flowed down the catheter tube and into the bag!

There is no way I can strain for bowel movements (because of the internal bleed/hematoma) so this rather major catheter bypass wasn’t because I was pushing too hard. Needless to say I was a little concerned so I called my CNS and she said come straight in to Same Day Emergency Care in the hospital.

I went and saw a surgeon I had seen when I was readmitted for my post-op bleed. We discussed what had happened and he decided to do a gentle flush of the catheter. The operating hospital had said that nobody was allowed to flush my catheter but needs must and I was being looked after by an urology surgeon that works in my local hospital and the operating hospital.

Touch wood, this seems to have cleared whatever blockage or debris that was there and it is draining perfectly now. I have to say the gentle flush was quite painful in my penis but I mentioned this to the surgeon and he was not too concerned. He was also not too concerned about the fresh blood down the tube given the amount of bleeding I have had since the surgery.

The problems and worries just seem to be never ending! 🥹

Finally I’ve had a full 24 hours without visiting or being admitted to hospital or seeing my GP and CNS! This past 9 days (since the op) have felt like an absolute eternity and I can’t see any end to it.

I’m due to return to the operating hospital on Tuesday for the catheter removal, just hoping everything goes nice and simply and I can start on my road to recovery properly.

I am absolutely and completely knackered! Zero energy levels. I am up and walking each hour to try avoid any clots but I am concerned about my energy levels. My heart rate is still quite high so I’ve made an appointment with my GP next week, as the anaesthetist advised me to.

Did you have energy issues following surgery?

How long before they resolved?

Hopefully I will soon be on the up…as I don’t think I can take much more of this. 🥲 gulp.

Take care

Greg.

User

Posted 07 Jul 2023 at 17:10

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

Derek.

User

Posted 07 Jul 2023 at 17:39

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 18:56

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 20:04

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.

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