Normal stuff after surgery?

User

Posted 27 Mar 2019 at 10:00

Hello all,

On the 21st I was in Guys Hospital having RARP with nerve sparing etc and frozen sampling (apparently provides a better clue on clear margins.

The operation itself was 'technically difficult' according to the Prof, as there was some scarring from the 40-odd needle biopsy I had had 6 weeks previously.

I had a spinal injection to deaden the lower half of my body (good for pain relief I was told) and then wheeled in. The spinal injection was, I have to say, more uncomfortable than I expected!

Out of theatre and awake I felt ok of course as there was a drip, pain meds and effect of the spinal all going on. By day two I was out of bed and had a shower, by day 3 walking around the corridors and ready to come home.

Once home (and as of today) I am feeling not so great. I am extremely tired all the time, have massive bruising around the operation sites (mostly on my right side), not enjoying the suprapubic catheter and just feeling generally yuck. I had a bad headache most of Tuesday so the Prof suggested I stop self-injecting the Clexane and just keep mobile and keep the stockings on. Tomorrow I will be clamping the catheter before hopeful removal Friday.

My question is that most people seem to have really good experiences with RARP whereas I am feeling very tired and worn out, not sure how far I should be walking (On Monday I did two miles - apparently too much) anxious about blood clots (as not injecting the Clexane) and, I think, as it was private - generally not supported well post surgery (they kind of turf you out). Maybe I am being dramatic and need to understand it was major surgery but I am not joking when I say I feel worse than I did two days ago and the pain is tolerable but still quite intense in the abdomen (no chance of putting socks on or shoes myself!).

Anyone else out there had a similar experience or can relate to what I have written? Don't get me wrong, I understand there has to be pain before gain, but maybe my anxiety is being fed by feeling so rough!

Any advice really appreciated and I hope you are keeping well!

Mark

User

Posted 28 Mar 2019 at 10:17

Thanks darkrainbow - I am not sure I want to watch a video but yes, I do have pain mainly when 'moving' my middle like getting up and down out of a chair. Walking doesnt seem to cause pain but I do get some catheter irritation I think. Will slow down for a week I think and let my body do its thing without bowing to too much physio pressure!

Mark

User

Posted 07 May 2019 at 15:22

Hi mark.

Cipro gave me all the side effects you describe. Felt like my skin was on fire and blurred vision. Still have pain in my tendons - both knees and ankles. I believe it's called being floxed.

My tendons are slowly improving after nearly a year. Still get neuropathic pain in my legs when exerting myself.

Hope things improve for you.

User

Posted 11 May 2019 at 21:30

Relief has come over time. Haven't taken any meds to counteract the cipro' side effects. Did report the issue on the governments yellow card scheme.

https://yellowcard.mhra.gov.uk

Very frustrating to be prescribed ciprofloxacin with no signs of any infection. At least my PSA is undetectable and I am thankful for that.

Hope things improve for you.

Edited by member 11 May 2019 at 21:38 | Reason: Not specified

User

Posted 30 May 2019 at 10:04

Perhaps you are right Chris - it is very effective in certain cases but is also pretty dangerous at the same time. In the US it is now not recommended for a UTI unless other antibiotics have failed. I think the usual issue of cause/effect come into play. For me I have taken it 3 times this year and the third time appears to have caused some damage but I am still working and able to function, albeit with bad fatigue and muscle pain! Still, now we know!

Got my first PSA reading today after RARP - 0.006. I am hoping that is good news as I read recently that chances of recurrence are higher if above 0.003! Seems 0.1 or less is no longer the indication of ‘cure’ it once was but the tests are getting ever more sensitive!

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User

Posted 27 Mar 2019 at 11:19

I had a s*** time post op nearly dead with organ failure etc etc due to sepsis. I was in hospital for 3 weeks.
2 miles is way to far to be walking at this stage.
If the pain persists or you start to feel unwell CALL THE DOCTOR.

Forgot to say I had been home for a few days and was doing a lot of walking - take it easy!!

Edited by member 27 Mar 2019 at 11:21 | Reason: Not specified

User

Posted 27 Mar 2019 at 13:13

Jeez, Sepsis? that must have been extremely frightening. did they tell you where it originated from?

User

Posted 27 Mar 2019 at 15:23

After abdominal surgery, they say your body uses 5000 calories a day just healing, and you won't be consuming anywhere near that so you are bound to be fatigued and out of sorts.

Definitely overdid the walking ... 2 miles!

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

User

Posted 27 Mar 2019 at 15:56

Thanks Lyn, I guess it doesn't seem far but clearly is if I am burning that amount of calories too!

The physio's in the hospital put the fear of god into me about 'mobilisation' and walking as much as possible. I can walk easily but they should provide a better guide. Seems to vary between 'don't do 20 miles' and 'potter about the house and garden'...

Anyone devised a successful graduated exercise plan??

User

Posted 27 Mar 2019 at 19:38

I pottered about the garden as instructed, unfortunately we have 113 acres so the mile down to my neighbor s was to far.

The surgeon believes the sepsis originated from a leaking urethral join but I remember him clearly saying that 1% will get it for no particular reason than bad luck. Interestingly the strain I had was antibiotic resistant so probably came from the hospital somewhere.

User

Posted 27 Mar 2019 at 20:23

Sounds a total nightmare! my brother in law had a heel operation and nearly ended up with an amputation due to something he got from the hospital! its a risky business for sure. the headaches are what bother me but maybe i just need to zone out a bit more and not be Mr Active!

User

Posted 27 Mar 2019 at 23:11

I was wondering why you had a headache. Are you taking enough liquids. A good flush of warm water might be useful.

User

Posted 28 Mar 2019 at 07:58

Rapidly realising that too much walking is not good but I still maintain that there is no decent guide. I have been told "walk as much as you can tolerate", well at 51 I can walk miles before I feel tired but clearly 'miles' is not the right answer. If they said "200 metres day 3, 300 metres day 4, 500 metres day 5 etc.

That is the bit I am not happy with - the physio in the hospital made it sound almost like a marathon contest - walk, walk, walk was all I heard...

Yesterday I did less than a mile and had a bag full of blood when I got back - called the nurse "oh, that can be normal", so again I have no idea if I have 'overdone it'...

I would say private versus NHS aftercare are poles apart. NHS will provide a district nurse etc whereas private you have to make the calls and usually not locally...feels quite isolating!

User

Posted 28 Mar 2019 at 07:59

I think more down to stress and feeling tethered, perhaps the injections not helping as I have been better since I stopped those! Perhaps a bit of warmth around my neck could help!

User

Posted 28 Mar 2019 at 08:45

Everyone is different but John was slightly younger than you and just as fit if not more so; 10 days post op (the day he had his catheter out) he was walking down to the bottom of our street and back. Granted, he had open surgery so bigger external wounds but the internal damage isn't massively different between the operations.

Many don't realise that opting for private RP means very little aftercare and, in some areas, difficulty getting referred back into NHS services if needed. However, it isn't true that men having RP on the NHS get support from district nurses - like everything else, it varies dramatically from region to region.

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

User

Posted 28 Mar 2019 at 08:49

Thanks Lyn, yes I think I was maybe generalising about the NHS...ok to the bottom of my street and back will be the goal today, mainly because today is 'clamping off' day and I don't want to be too far from my house as I have no idea what will happen!!

Cheers,

Mark

User

Posted 28 Mar 2019 at 09:09

Good morning

After you had a major operation you walked miles ....I'm not in the good situation to judge you but it was / is radical to me.on other hands...that mean you are not getting pains as much as I did.OK that's fine it's your body if your happy to walk miles than it's up to you.

But I thought resting is the best way to heal your body ....and when you walk your catheter doesn't irritate your certain organs?

That's why the blood appears in catheter.

I watched the RP surgery operation on you tube than I realised why I'm still in pains 3 months after I had the surgery!

Still inside of my tummy stitches healing.

As Lynn says everybody is different I think your the lucky one..I'm the pussy cat one.

Good luck

User

Posted 28 Mar 2019 at 10:17

Mark

User

Posted 28 Mar 2019 at 10:25

After a few days, I walked out the back of the house to admire the real outdoors. That was enough! Next stage was down the alleyway to the road outside my house to admire real life. That was good too. Next day, to the near end of the road. Day after was to the far end of the road. It was a few days from there before a walk round the block. And so it increased...

Two months on, I was rock climbing in the Peak District. In hindsight, that was perhaps a little too much too soon! The adhesions took forever to sort themselves out, and I still struggle slightly with them, two years on from RP. It gets better each month though.

Like many of us, I used up whatever my body was able to do on a daily basis. It seems to be a case of listen to your body, and really don't push too hard. It'll all come in time.

I'm now fully back to hard rock climbing, endurance events, scuba diving, long distance walking and building. Just takes time!

User

Posted 28 Mar 2019 at 11:29

Thanks Graham - that is a really good indicator of what I should be doing too! Sounds like you are in a good place of recovery now at least!

User

Posted 29 Mar 2019 at 11:28

Hi Mark,

These are my musings regarding my surgery by Professor Whocannotbenamedhere, who I guess was your surgeon as well.

I could hardly be more pleased with my operation, except that somewhere we lost 2” and I have total ED.

No cancer though (for now), so happy days.

Cheers, John.

https://community.prostatecanceruk.org/posts/t16224-Retzius-Sparing-Laparoscopic-Radical-Prostatectomy

User

Posted 29 Mar 2019 at 11:42

Thanks John - really interesting post and I can see some parallels although I didnt leave hospital with any medication outside the clexane injections (which dont seem to like me much but I will persevere a few more days). Had the same issues with the overnight bag. always seemed to be a kink or block in the road to bag heaven! I actually found the extensive bruising and catheter the most painful part!

I actually turned off the catheter on day 7 and had it out today. We were told to expect 4-5 hours there and were out within the hour! Turns out a suprapubic catheter doesnt need any monitoring post removal. Was pretty easy, just a deep breath and whipped out...phew.

Like you I am using the lightest Tena pad as my nerves were spared, but I have found on day 8 that an impending fart could spell a few drops...need to train that bit, although I suspect still a lot of stuff inside reducing in inflammation and filling in the gaps!

Interested to know how the prof described your surgery. He said mine went well but was 'technically difficult' probably due to the scarring from the 40 core biopsy 6 weeks before - did he find any issue with you on that side? He did say 40 cores was a lot, you had 42!!

Feeling knackered by lunchtime but overall, after 8 days, it seems each day does get better, pain subsides and it is nice to have no plumbing left in my body at this point!

Cheers,

Mark

User

Posted 30 Mar 2019 at 17:56

Hi Mark,

Do bear in mind that the nerves Professor Whocannotbenamedhere saved, control erectile function in the hope that you will achieve erections at some point in the future.

They are nothing to do with your urethral sphincters which control urine flow.

Keep recuperating!

Cheers, John.

User

Posted 31 Mar 2019 at 10:10

Thanks John...will keep that in mind! Recovery seems to be improving daily now which is great...less discomfort and having the catheter out seems to make a huge difference in all honesty!

Cheers,

Mark

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