Well I never

Well I never

User

Posted 22 Jan 2016 at 10:58

Hi Allison

I don't know why the website does this, but when i went to look at your post on P3 it came up page not found. It is a known bug and I suspect a coding command error in new page creation. Any way I have really only posted again to force the new page in case the error message deters another person from commenting!

Looks like I have delightful (not) weather to drive down in again and will text you later when I am in Situ. Maybe coffee at the orbital on Sat or Sun ?

xxx

User

Posted 23 Jan 2016 at 22:28

Hi Alison,

Am sorry to read about John and his not so nice experiences!

Really hope operation on the 4th Feb goes well, will be thinking of you.

To work or not to work!!! They both have positives and negatIves. I had a couple of months off work and found it so beneficial to be with bob and recoup some of my energies. I was very worried about my return and did a phased return with some support. Don't get me wrong it's still hard but the benefits I've found have been my colleagues have sort of been my councillors. It has helped bob in the fact that he has tried to do a few more domestic jobs around house so keeping him a little more active and giving him a daily sense of purpose.

Hope you find what suits you best, good luck with your descion.

Lesley xx

User

Posted 02 Feb 2016 at 22:07

Hi all

So hubby had his TURP today. It took 3 hours, the surgeon said it was the most difficult he'd ever performed. He is coming home tomorrow as there is no question currently of removing the supra pubic and now he has two catheters! The surgeon thinks the chances of success are 50/50. He said there was lots of infection, odd really as there were no indications of a UTI (fever etc). The urethra was difficult to navigate, due to multiple false pathways, it was very scarred, possibly through UITs or the attempted catheterisations on Dec 30th or the cancer. He has to go back on 17th to have the urethral catheter removed under anaesthetic and to see what happens. Assuming it's possible to pass water then a further stretch will be required later. In the meantime the supra pubic will stay in place and won't be removed unless and until the situation is resolved, or not at all.

Two large doses of antibiotics given during the surgery did mean that hubby looked better than he'd looked for a year when he came back. That's one good thing. The other good thing is that removal of a substantial amount of prostate tissue means they can have a good look at the cancer.

Anyway, we will have to wait and see.

Night all

Devonmaid x

User

Posted 02 Feb 2016 at 22:10

Wishing him well Devonmaid. Hope you both have a good night

We can't control the winds - but we can adjust our sails

User

Posted 02 Feb 2016 at 22:14

Allison

I am so pleased you posted I had been thinking about you today.

Well the TURP is done and as you say everythng the surgeon found confirmed why John had such a terrible time after Xmas.

Fingers crossed now that he can come home tomorrow.

xxx

User

Posted 02 Feb 2016 at 23:03

Great that it went well. Give my best to John. Hopefully he will be on an improvement path now. Good news! Thinking if you both.

User

Posted 02 Feb 2016 at 23:58

I have also been thinking about you all day Alison, thank goodness the op has know been done, life in the fast lane it is pretty Tish isn't it. So glad that it has now been done and that John is looking better although probably not feeling it at the moment.

Give that grand baby a huge hug when you can that will make you feel so much better.

Lots of love

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 03 Feb 2016 at 01:12

Hugs to you both xxxx

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

User

Posted 03 Feb 2016 at 07:10

Hi Allison,

glad to hear all went well.

all the best Barry

User

Posted 03 Feb 2016 at 07:36

Sending lots of love, xx

Fiona.

User

Posted 03 Feb 2016 at 07:44

You both seem so much better now and that is a blessing. May it continue
Chris

User

Posted 03 Feb 2016 at 10:19

Glad to hear he has had the surgery and that he is feeling better. I hope all continues to go well.

Rosy

User

Posted 03 Feb 2016 at 15:14

Thanks my friends

Well he wasn't so good overnight and has been bleeding heavily so they are keeping him in again. I have been in to check on him and he is OK despite the blood loss and is resting well on a decent cocktail of painkillers. Everything underneath is very swollen (quite a shock after 5 years on HT lol) but that should all recover. We honestly will not know if it's going to be possible to remove the supra pubic until the 17th, even then we will have to face a further procedure a few weeks later to stretch the urethra eek. I guess we feel that it would be great if it comes out but if it doesn't then worse things happen at sea. Personally, I rather they left it alone, especially after what the surgeon said about the dire state of the urethra but we need to see it through in case it works out for him.

I've been in to see my Gp today re the work situation and I won't be going back my time soon, you'll be relieved to know. My brief moment of madness has passed, I know it wouldn't work out if I did go back.

Thank you all for your kind words, it's truly appreciated.

With love Allison xxx

Edited by member 03 Feb 2016 at 17:14 | Reason: Not specified

User

Posted 03 Feb 2016 at 15:20

Hope John recovers well and that it all goes according to plan. Take care of yourself too.

We can't control the winds - but we can adjust our sails

User

Posted 03 Feb 2016 at 15:37

Hi Allison,

Hope they get John home soon and things improve quickly, sending you all our best wishes

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 03 Feb 2016 at 18:56

Having my SPC in place until all the urethral treatments were finished did give me some comfort that there was a backup in place. It did give my urethra time to heal but it did mean the bladder function was not operating as normal. Hope all goes well for you both.

Thanks Chris

User

Posted 04 Feb 2016 at 12:15

Hi Alison

I am so relieved for you that Jon has had the operation and is on road to recovery. Sorry to hear he's had to stay in hospital an extra night because of blood in urine. I believe that is quite normal post op and at least they can flush it out thoroughly.

Glad to hear you're also taking care of yourself by staying off work. Use your energies to concentrate on the both of you.

Take care,

Lesley x

User

Posted 04 Feb 2016 at 20:21

Hi Lesley,

It wasn't blood in the urine that caused the problem with bleeding, that is normal, as I well know as John has a supra pubic already.

Well I went to pick him up today and he promptly passed out, eyes rolling in the back of his head, shaking, vommitting , scary moments, luckily the nurse was in the room and the consultant came along swiftly. Seems likely that blood loss, trauma, low blood pressure and anaesthetic etc had taken its toll. I managed to get him home eventually and he is now feeling rubbish but is at least in his own bed. I'm sure things will improve, the swelling has come down anyway and he is managing the new catheter very well, although he's naturally protective of his lower body. Now to wait for the TWOC on the 17th and see if the procedure works. The consultant told me his gut feeling is that it will. Here's hoping.

Cheers all

Allison

User

Posted 04 Feb 2016 at 21:03

Allison

being home in his own bed with you there will help him so much.

Biggest hugs and best wishes for the TWOC in about 2 weeks time. I will be down your way in March so will make sure we get together.

xxx

User

Posted 04 Feb 2016 at 23:07

Scary moments Alison better that it happened while John was still in the hospital though. So glad he is home he will be able to relax more although I would think that you will be on high alert for some time to come.

Love as always X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 05 Feb 2016 at 09:01

Hi Alison

O my goodness, how scary for you!! Glad he's overcome trauma and is back home. Hope all goes a little more smoothly from now on for you both.

Take care

Lesley x

User

Posted 05 Feb 2016 at 09:25

Hi Allison,

here's hoping things settle down and you and John are able to get some rest and peace. Sending love,

Fiona.

User

Posted 05 Feb 2016 at 10:08

Morning Alli - how is he today?

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

User

Posted 05 Feb 2016 at 11:28

He's quite tearful today Lyn, he's been through a lot of trauma to his private parts and it's very distressing. He's an incredibly strong man so I know he will feel better soon. I think there's often a down after an operation as you assess what's happened, I think it's that.

Basically every move he makes pulls on the catheter and causes pain, being himself he won't take the painkillers as he had done in the hospital, given by the nurses he felt obliged. He's very constipated too so I'm feeding him Jason Vale's unblocking juices, they usually work.

We both have horrible cold viruses and I'm shattered if I'm honest. I'm trying to do as little as I can get away with today so that I can expend my energy where it's needed.

He's dreading the TWOC, I must admit I am too, poor man.

Thanks for asking.

Allison xxx

User

Posted 05 Feb 2016 at 11:42

Wishing him a speedy relief Alison.

As far as jobs to do are concerned, well they'll still be there for another day. Just do the bits you can see and that will fret you and leave what you can.
Plenty of vitamin C for you perhaps?

We can't control the winds - but we can adjust our sails

User

Posted 05 Feb 2016 at 12:14

I am so sorry - this has been a trying few months for you both. And even time with D will not be much comfort in these next fews days as John will be frightened of cuddles pulling on his catheter. I hope everything settles down soon my friend xxx

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

User

Posted 05 Feb 2016 at 14:03

I know we all different and cope with things in our own way. Has he got his leg / thigh straps on correctly ? just moving about did not pull on my catheter. I found the urethral catheter irritating and slight uncomfortable but not painful,same with the SPC, yes if you pull on it at the entry point it does hurt for a short time. On one occasion one of my ward nurses fitted my straps and did not have a clue, fortunately I knew how they should have been fitted. I wore elasticated short type underpants tight enough to keep it all in place but not to tight to cause discomfort. I imagine the trauma in his urethra was worse than mine was, I did pass some clots between the urethra and the catheter that wad painful made worse by a doctor pulling the clot out. I also had urine leaking into the soft tissue of the penis that was painful and made the penis swell.Is he draining from both catheters ? I have never had much trouble with the twoc and I have done five so far, just need to relax and not get anxious. Drink the water the way you are told by the staff. The first urine did sting a little but it soon passed.

Hope it all starts to improve soon.

Thanks Chris

User

Posted 05 Feb 2016 at 16:36

All the best and good luck to him on the 17th.

User

Posted 05 Feb 2016 at 17:12

Thanks Chris

He's got various leg straps and is trying them all to find a solution. The circumcision is what is causing extra pain as he has stitches there and the catheter coming out (it's huge, a size 20) is pulling on the stitches. He's leaking outside of the catheter too. The SPC seems fine, he's not using it at the moment. It'll all settle down I'm sure but I do feel for him, seeing how this has affected him.

Lots of love

Allison

User

Posted 05 Feb 2016 at 17:23

Alison
My heart goes out to both of you. I'm wincing reading this and you are both being so amazingly brave with everything going on. And circumcision too. It's the only thing I remember about being 5 yrs old. Just terrible for John. I so hope you can both stay strong and that things calm substantially.
Chris

User

Posted 05 Feb 2016 at 18:17

Alison

Ouch and double ouch, your man deserves a gold medal for bravery. Just in case I have sent you a link to a thigh strap picture , but I was amazed at the some of the images shown. The link shows a picture of how I have always attached my catheter to the thigh strap, but with the strap higher up the thigh. A lot of pictures show the retaining strap (green in the picture) just round the pipe, to me that does not prevent the pipe being pulled down. I would then have the top strap of urine bag above the knee to stop it slipping down and pulling on the catheter.

https://cdn.activeforever.com/media/catalog/product/cache/1/image/9df78eab33525d08d6e5fb8d27136e95/0/0/0054081_dale-foley-catheter-holder.jpeg

Some other odd things, if he is double draining the urine in one bag was often a different colour to the other bag. The way the bags filled at night was also strange some times the SPC would be full and the urethral almost empty, sometimes it was the opposite way round.

Send him my regards.

Thanks Chris

User

Posted 07 Feb 2016 at 21:04

Thanks Chris

That is extremely helpful. The SPC isn't working at the moment for some reason and he gets going with the urethral one using the flip flow but it stops after a few seconds because he gets a spasm. He's using a bag right now so that he can get on with healing. I've asked him to change the SPC valve to check what's going on there.

Thanks so much

Allison

User

Posted 07 Feb 2016 at 22:08

Hi Allison

SIZE 20! O my goodness THAT IS BIG!! On a positive note because it's so big it's less likely to block.

Have a couple of points, you may already know,that may or may not help.

Constipation can cause the catheter to bypass - movicol is a good laxative to ask gp for.

Pain from around circumcision site - ask gp for some instillagel, this is an anaesthetic gel which could help by applying around the area that painful.

Not sure why SPC isn't working, can't help you with that problem.

Hope he starts feeling better soon.

Lesley x

User

Posted 08 Feb 2016 at 10:50

Chris and Lesley

Thanks so much for your advice. We have an oncology appointment today so will discuss with the consultant. I'm not able to go with hubby today as I've got a dreadful cold and cough and can't justify taking germs into a place where immune compromised people are, so will send himself in with a list of questions. Lots of pain today. I feel a bit concerned that no one is looking at it until the 17th to be honest. I'll probably call our nurse and ask for someone to review the wound, if they don't look at it today at oncology.

Thank goodness for this forum and the generous members.

Lots of love

Allison

User

Posted 08 Feb 2016 at 14:48

Hi Allison,

Yes, that seems a long time to wait for a review given everything John has been through. Neil would have benefited from circumcision, not that he would have entertained it but it would a relieved pressure on the glans which he was always having to put cream on caused by the pressure from the foreskin being swollen. At least with John, the glans will have plenty of exposure to the air and be less likely to get soreness and inflammation, eg balanitis, I think is the term. Hope you feel better soon, Sending love,

Fiona.

User

Posted 09 Feb 2016 at 22:52

Well oncology was good, all remains under control and no change of treatment needed, which is fantastic news, especially after them telling us that the cancer had spread to the kidney and then fifteen minutes later told us, oh nothing to worry about, it's nephohydrosis!

Both catheters blocked yesterday and guess what? Yep, same again today, we are currently waiting for the night shift district nurse service to come out. I must admit the SPC wasn't any trouble compared to this.

Allison

User

Posted 09 Feb 2016 at 23:16

Alison constantly thinking of you and John , I have just managed to track down the cuddle blanket and it is know winging it's way to you😘.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 09 Feb 2016 at 23:49

.... and if Julie's blanket fails, I will send you a nice cup of tea & a large valium!

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

User

Posted 10 Feb 2016 at 07:37

Glad you have had some good news. Hang on in there! Hope your cold is better too.

Rosy

User

Posted 10 Feb 2016 at 08:25

Allison

Is he flowing again ?

Hope is sorted.

Thanks chris

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

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