Well I never

User

Posted 02 Jan 2016 at 05:19

hi allison
made me cringe when I read about how the treatment didnt go, heres hoping it improves for you both

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 02 Jan 2016 at 09:51

Hi Alison
It's so disheartening to read that this is still happening in this day and age. John should not have had to suffer like that. I think a complaint does need to be made in good time so systems/procedures can be changed.

I have a bladder neck stenosis (restricted opening) that they could not get the camera through so unlikely they will get a catheter in. The consultant I saw said to me if I were to go into.retention I wasn't to let any tom, dick or Harry near me with a cathetar (not sure tom, dick or Harry would listen to me like)...He said that a urologist would be able to draw the urine off with a syringe until.appropriate intervention could take place. I'm obviously hoping none of this has to take place. My point being why oh why could they not do this for John....

Actually that reminds me the consultant was supposed to send a follow up.appointment about a year ago....its bloody maddening isn't it

Take care and really hope John gets this all sorted ASAP

Bri x

User

Posted 02 Jan 2016 at 09:54

Hi Allison,

I can believe what you John has gone through with poor attempts by nurses/doctors at trying to push a catheter up a mans penis when he was in retention, they need to have a size 16 french shoved up their uretha they would soon be asking for some sort of painkillers

A chap called David [flyboy] who has not posted for a while has got a superpubic catheter fitted he might be on to ask advice from, I know he has had some bloody affairs with his,

Best wishs to you and John

Regards Barry

Edited by member 02 Jan 2016 at 10:06 | Reason: Not specified

User

Posted 02 Jan 2016 at 12:50

Hi Allison

It's normal to have blood and some urine still voiding from the penis even after a supra pubic catheter. The other thing to watch for is fluid/urine coming from the actual wound, combined with not much flow in the catheter and increased abdominal discomfort. This can be a sign of a blockage and needs either a district nurse to flush the catheter to get rid of the blockage or if they can't/won't do this, a trip to A and E for medical intervention. Fingers crossed none of this will happen but it all did to us so any info I can pass on to you may hopefully keep you vigilant though no doubt you are anyway !

Love, Fiona. x

User

Posted 02 Jan 2016 at 23:41

Nothing short of appalling, Alison. I truly hope you get answers. More importantly, I hope John gets the treatment he needs from now on.

Paul

Stay Calm And Carry On.

User

Posted 03 Jan 2016 at 01:04

What an awful situation for you both of you. I don't blame you for having a rant. I'm sure they will have caused quite a bit of trauma with all the attempts to catheterise which is probably the cause of at least some of the bleeding. Hope things are settling down now.

Rosy

User

Posted 03 Jan 2016 at 14:42

Thank you all for your advice and support. The District Nurse finally came today after much prodding from me. However, that said, she was fantastic, really caring and kind. The wound is healing really well and she stuck a clear film over the catheter to keep it clean and flat (oh the dread of pulling it out by accident). She said the blood will probably continue for up to two weeks and tends to get worse the more you move around, but it's nothing to worry about yet and she explained how the blood and urine don't really mix well and you can see it separate out. She left us a numbing gel for the excruciating pain in the penis on the catheter being emptied and plenty of gauze for applying it. John still looks a weird colour but he has been through an awful ordeal and I can't help wondering what toxins have been reabsorbed. She also said that medics are trained not to "poke" at a tumour as there is danger there and this is my current major concern. I have no idea if they have damaged the tumour with their actions, I sincerely hope not.

Anyway, thank goodness the GP surgery is open tomorrow, I feel safer with our GP. We will go back and see the urologist on Jan 20th, privately, I might add as there was no planned follow up from the hospital. Thank goodness for my Company's private medical health scheme.

Lots of love

Allison xx

User

Posted 03 Jan 2016 at 14:51

After all the disappointment of not getting VR, it seems there was a greater force at play - someone somewhere knew you would need that private health cover :-(

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

User

Posted 03 Jan 2016 at 19:34

Devonmaid

I accidentally caught my SPC when showering, it was quite painful but the balloon does secure them quite well. Not sure if you were given spare catheter, i was given a spare one and told if it comes out get the new one fitted within two hours. The hole in the bladder seals itself very quickly. On removal of mine the balloon was deflated the nurse pulled out the SPC then pressed on the wound for about a minute and that it was done, three samples and on the way home.

Flyboy changes his own.

Thanks Chris

User

Posted 05 Jan 2016 at 20:06

The thought of changing the actual catheter gives me the creeps, I think we will leave that to the practice nurse. I had an interesting chat with a doctor today who told me that because John's retention had come on slowly (it's usually sudden) and his bladder had stretched over time he wouldn't have felt as much pain as if it had happened suddenly, hence not yelling at the medics (as well as being ex military and having a very stoic attitude). Also as he was expelling a tiny bit of water they would not have regarded it as an emergency. Hmm, I see that, but the specialist nurse has said today that they are investigating, without us complainiing, anyway, as they feel this shouldn't have happened. Anyway, a daily improvement is happening, he can only get out of bed for a few minutes a day yet (he's still yellow from the toxic build up of urea) but I do think he's getting better.

Yes Lyn, thank goodness I'm still employed!

Lots of love

Allison

User

Posted 05 Jan 2016 at 22:14

Originally Posted by: Online Community Member

Yes Lyn, thank goodness I'm still employed!

Lots of love
Allison

Never thought we would say that, eh??? Stay strong lovely xxx

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

User

Posted 05 Jan 2016 at 22:26

Hi Alison,

My Ex hubby was Ex military so I so understand where you are coming from re the stoical comment . So glad that John is feeling more comfortable . Keep your chin up .

Lots of love as always.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 05 Jan 2016 at 23:02

Allison

Unlike a urethral catheter a SPC is okay for about six weeks before changing and " normally" the first change is done at a hospital not by a district nurse.

Thanks Chris

User

Posted 05 Jan 2016 at 23:05

Each little step helps, hope he continues improving. Thinking of you both!

User

Posted 20 Jan 2016 at 23:03

Good evening my friends

Just an update, we saw the consultant this evening (private of course). John is booked in for a TURP on 2nd Feb. The consultant feels he has three problems, the prostate enlargement due to the cancer (hence the TURP), a damage kidney (possibly needing removal or a stent if still working to some extent, but that would be for a later date) and a need for a circumcision (possibly something to do with repeated, untreated infections. Anyway, the hope is that the TURP and circumcision will allow normal emptying and the supra pubic catheter may be removed. Obviously subject to success in the op but he feels that worth doing for the potential benefits. John is still very weak, though recovering well and not so yellow now the build up of toxins re being excreted. He is a tad concerned but whilst the supra Pubic is great (after what he's been through), we can't deny that it has many drawbacks, not least catching the damn thing in your clothes.

So, hopefully this operation will ultimately see John back to reasonable health. If that does work out this way then I'm going to see if I can manage to go back to work, albeit at a reduced workload. As wonderful as it is to be free of work stress, I would rather leave the consequences of long term sick leave until I really need it.

So oncology on Feb 8th, results of the latest scans and the possibility of a better year ahead. Phew,

Love to everyone

Allison xxx

User

Posted 21 Jan 2016 at 00:42

Allison

It cheers me to read that things are happening at a more acceptable pace, John is geeting the surgical treatment he needs and hopefully feeling much better to boot.

Down in Swindon this weekend if you fancy a coffee at M&S.

As for the return to work, a sort of plan B, all well and good for now as long as you can revert to plan A at any time if you need to.

big hugs

xxx

User

Posted 21 Jan 2016 at 09:14

I don't know whether to be happy or worried for you and I guess I am just picking up your mixed feelings. Will the circumcision be done at the same time as the TURP to avoid two lots of GA? The TURP will hopefully bring some immediate relief and eventually some normality back.

Returning to work is why I worry for you - but with reduced hours or flexible working it might be really good for you to maintain some outside activity .... and to keep the private health cover ticking along. But oh, to be at work and missing time with baby D - that will be tough :-(

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

User

Posted 21 Jan 2016 at 22:27

Little bit like lyn I am picking up mixed vibes from you Alison. Stay at home versus back to work only you can make that call I so wish as wives iwe didn't have to face these decisions but sometimes we have to. Whatever way you go remember to make time for yourself.

Thinking of you and John as always

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 22 Jan 2016 at 09:28

Ah yes I do have very mixed feelings about work, I've had to complete a horrible insurance form (a bit like a PIP) asking whether I'm able to do the ironing etc. It has made me question my feelings about work. I'm doing nothing yet except complete the forms, I'll speak to the company doctor about what's possible before I do anything at all. I spoke to my own GP and told him I feel very conflicted about it all and his view was that work would be a respite. I may just go with the flow, I am a great believer in fate and tend to let things pan out how they may. It was nice to feel as though I could potentially face working again but that's not for now, now it's about getting John better (it's a slow process even now) and then getting him over this operation. He's having doubts about whether he's well enough to face it to be honest.

One thing I have been pondering on is what consultants hear when they talk to you.

For instance, John has had a horrible pain in his side (it's the kidney for sure) for a long time. We mentioned it again and what went down in the notes was a mild pain.hmm. Secondly he wrote that John was feeling much better, well what he actually said was " I feel very weak".

They don't hear you do they?

Mo, let me know if your free at the weekend, a coffee would be nice xxx

User

Posted 22 Jan 2016 at 10:28

Alison
Just wanted to wish you and John mine and Elaine's best wishes for what's ahead. We both kind of believe in fate too -- everything has a habit of sorting itself out !! Thinking of you
Chris

If life gives you lemons , then make lemonade

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