Well I never

User

Posted 10 Feb 2016 at 12:55

Thanks for the offer of a cuddly blanket, tea and Valium, I'll happily take all three! We are staying in bed today, I'm still feeling rough with this nasty bug so it's stuff the housework and recuperate day.

Chris, we managed to get some flow by dislodging a blood clot and the district nurse turned up at halfpast midnight to flush the bladder out, which was painless and worked well. The consultant rang this morning and advised not to use the valves anymore because it's using them that causes the spasm that stops the flow and gradually causes a blockage. Thank you for asking.

Apparently there are only Westerns on the telly today, so I'm having an enforced bout of cowboy movies, which is great for dozing off to.

Lots of love

Allison xx

User

Posted 10 Feb 2016 at 13:35

You look after yourselves and yes stuff the housework. I am resting too so I declare this

a PCa communal rest day.

requirements:

do nothing,
keep comfortable,
watch rubbish on TV,
forget anything you think you ought to do it will be there tomorrow
Take drugs if in pain,
Relax and sleep when needed

This should be come an annual event, maybe held in a big marquee where we can simply just be and let the world go by.

Allison and John enjoy your rest day. I know I will!

User

Posted 10 Feb 2016 at 13:46

Allison

Great to hear oncology side of John's battles is stable indeed positively good. After all the other issues you both need a break. Maybe not with cowboy films but anything is better than vile kyle.!!

I hope you can get any of the catheters to function consistently, when there is any blood there is always a bigger chance of them getting blocked. I was quite obsessed with catheter hygiene especially the flip flow ones lots of manual intervention and operation so an increased risk of infection. keeping the area around the catheter entry as clean as possible can cause discomfort under normal conditions, following John's surgery even more so. However better a little discomfort from that than any from a UTI.

I hate that you have another cold bug, you were poorly the last two times we have got together. I think you need a pampering day! My house hunt is now on so I will be there a bit more often in the coming weeks.

Xxxxxx

User

Posted 19 Feb 2016 at 22:31

Just an update after the TWOC this week. Sadly the TURP doesn't seem to have been successful, although the keigels are being performed in the hope of getting so,e control eventually. The SPC remains in place but no flip flow tap use this time, for some reason since the other catheter was inserted the flip valves stopped working. There are still a lot of bladder spasms to be endured and the catheter removal from the urethra was horrible (I was there, brutal stuff as it was a 22 and massive).

Still very sore in the nether regions, but I guess we are both happy that we can go outside again (next to impossible with the rigid urethral catheter). Who knows if by some stroke of luck the bladder will be able to work again, if not then at least we tried.

Back for a kidney scan in two weeks, the left kidney has been blocked for months but doesn't seem so painful now, so even if it is it may not require any treatment.

All in all, I feel like this episode is almost over and a new one is beginning. As recommended by the consultant a few days away are being planned, sea and wine my possibly be involved, though sadly not sun, but the coast is nice whatever the weather.

Thanks for all the support during this time, it really has been difficult and goes to show that Pca can affect men in diverse ways, thank goodness I wasn't working, it would have been impossible to cope.

Lots of love to everyone, Mo, I'm not quite recovered from this bug, still got a sore throat, that must be three weeks, but I take comfort that everyone else seems to have the same, so I'm not unusual!

Lots of love

Devonmaid.

Edited by member 22 Feb 2016 at 22:20 | Reason: Not specified

User

Posted 19 Feb 2016 at 22:53

Oh Alison,

Sorry I can't offer advice on twearks , tweets or twocks but what I can say is that my heart is with you in volumes.

Stay under the duvet X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 19 Feb 2016 at 23:20

Hi Alison,

Really sorry to hear things are difficult for you both. Just wanted to say you are in my thoughts. I hope everything improves so that you can enjoy those few days away.

Steve x

User

Posted 20 Feb 2016 at 00:42

So disappointing for you but I know you will pick yourselves up and carry on because according to FB you are a woman of courage x

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

User

Posted 20 Feb 2016 at 03:05

Sorry to hear things haven't gone as hoped but I'm glad you are able to plan a few days away so you can 'regroup'. I can empathise with the different episodes - sometimes things change and you then just get used to a different sort of 'normal'. It intrigues me how we are able to normalise the difficult situations many of us are going through. If anyone told us ahead what we would be dealing with I'm sure we wouldn't think we could cope - but we do because we have to.

Enjoy your break - I can't think of anything better than watching the sea with a drink in hand.

Rosy

User

Posted 20 Feb 2016 at 07:54

Sorry to hear his and your problems continue,as regards the bladder working again, it is now just over three months since all my catheters were removed following 90 days of catheterisation, yesterday I leaked three ml.Frequency and flow are a bit iffy at times.Sometimes I go right through the night without getting up last night it was three times but only leaked one ml. So stay postive and hopefully things will improve.

Take care and enjoy your break.

Thanks Chris

User

Posted 20 Feb 2016 at 09:29

Hi Allison

Sorry to hear that things haven't been as successful as you had hoped.

On the positive side I'm glad t see SPC is still draining and you can get out and about. Hope you have a lovely few days by the sea. This in itself has got to be good therapy for you both.

Lesley xx

User

Posted 20 Feb 2016 at 12:40

Elaine and I both sending wishes for a relaxing time by the sea together holding hands.
Chris

If life gives you lemons , then make lemonade

User

Posted 20 Feb 2016 at 13:30

Dear Allison,

I must apologise for such a long delay in posting a reply here.

I'm finally well after months of infections, but nothing to compare with the sheer hell John has been through.

Reading through it all I have been wincing too, as someone else said. What a traumatic time you've both had.

Please God, you'll get some good days by the sea and that John will finally come through this awful period in his life.

He IS a strong brave man, and every time I've seen him he looked so well despite the battle he was fighting.

It's no wonder he has been brought low by this onslaught of painful procedures.

Looking forward to reading some much better news from you soon,

Warmest wishes always,

George and Lynn

B2PCa

User

Posted 23 Feb 2016 at 19:17

Oh George

I did wonder about the lack of posting here from you, I hope you are improving my dear friend.

Well wonder of wonders, it's John's birthday day and ...... He passed some urine through the urethra. Boy did it hurt (and continued to hurt all day) but a huge step forward and hope reigns eternal.

Lots of love

Allison

User

Posted 23 Feb 2016 at 20:44

Hi Allison,
Hopefully the pain will ease as the days pass,
sometimes life seems to be a struggle but you know we are all with you and John
Barry

User

Posted 23 Feb 2016 at 22:21

To be completely literally correct it is MISOGYNIST. So there ,

User

Posted 24 Feb 2016 at 09:14

Well something obviously happened here that wasn't pleasant, fortunately I was sleeping the sleep of the just, so missed it. Thank you to the moderators for their quick action.

Devonmaid

User

Posted 04 Mar 2016 at 23:16

Well, John has a UTI. I phoned the doc last Friday to ask for his urine to be dipped as the smell was unbelievable. I had to wait for. Nurse to phone and of course she phoned while I was out and spoke to John, saying he couldn't have an infection as he had none of the usual symptoms. As we had visitors staying we accepted this. By the following Wednesday I'd had enough of the foul pong which you could smell a mile off. I called the doc again and this time was asked to bring him down and yes, he had a UTI, everything but the kitchen sink was in the urine. I felt miffed as the previous nurse should have dipped the urine, having a supra pubic catheter does make it more likely, plus all the surgery to the nether regions. His catheter blocked as well but unblocked itself during the SIX hours we waited for the district nurse to call back. To say that my lovely, stoic husband is fed up is putting it mildly. Anyway, bladder and kidney scans on Monday next week and consultant on the 16th will help decide whether this SPC is going to be a life long thing (I suspect so ). I think the services for this type of thing are pretty rubbish. You can't go to the GP for a blockage, you must ring the district nurse, you can't get your urine tested by the DN you have to go to the GP, he can only have a bladder wash out if the GP supplies a prescription so that the district nurse can do it. I honesty don't know what people who are on their own do, especially as UTIs can make you confused. The modern NHS has lost the plot I think. Or I have. Anyway I'm learning what's what and next time intend to take the urine down and demand that it is dipped. I'm sure there will be many "next times".

Ps, I realise that John has a very high pain threshold, we've been through some pretty horrible situations with pain over that's five years, with me only knowing that pain was crippling as things deteriorated quickly. I remembered yesterday that when he was about 7 he nearly died from peritonitis, his appendix burst and he only told his mum he had pain once it had burst. I shall bear that in mind in future.

Lot os love

Allison

User

Posted 05 Mar 2016 at 00:12

Poor you - I hope he responds to the antibiotics soon. As an NHS employee I have to agree with you about there being no sense to some of the systems. Good old fashioned common sense doesn't fit in with the business model. It's worth complaining as 'customer satisfaction' is a major target. I know the Trust I work for does respond well to complaints and reviews the systems in place.

All the best

Rosy

User

Posted 05 Mar 2016 at 08:16

Not good news, you have been having a rough time. I remember that pungent smell you speak of, so does my GP she took the top off the sample bottle and it nearly blew her head off. I had a recurring UTI post RP so when I rang the GP would tell them there was also a yellow discharge, which there frequently was, this always seemed to get the urine dipped and sent off to the lab to be cultivated of whatever the correct terminology is.

I know we have this postcode lottery of care but our hospital is very good we now have a single point of contact at Urology who you can phone for help, not sure if your Urology department is the same. My consultant/surgeon also arranged for me to have open access back onto the ward if I was has having problems following my subsequent ops and fitting of the Super pubic.

Take care of yourselves.

Thanks Chris

User

Posted 05 Mar 2016 at 09:47

Allison,

I really feel for you and John. When Neil had a SPC fitted no one seemed to take any responsibility for it afterwards and we, too were shunted from District nurse, etc and twice Neil had to be admitted to a urology ward with all the stress of going via A and E as they were the only ones who would sort the blockage. There really should be much better after care and systems of getting help, as you say, I cant imagine what it's like if someone is their own. Amazed they were so dismissive about the prospect of an infection, with all that meddling to the bladder and associated areas, the risk of infection is inevitably higher. Next time we have a urology representative at next PCa Support Group I must remember to ask about all this !

Fiona. x

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