Well I never

Well I never

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

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

User

Posted 05 Mar 2016 at 10:08

Hi Allison what a terrible run around. I can tell you too what it is like as someone on my own to have constant UTIs. I was very ill four years ago with a constant UTI which was never adequately dealt with until I was hospitalised. What I learnt was the importance of tackling it early. I did three things.

So I purchased (off amazon if I remember correctly) the dip sticks used at the GPs. Whenever I suspect a UTI and I now have a good appreciation from colour changes, to cloudiness in the pee to the pain in the penis, it varies, I immediately test. If there are nitrates present I know I have a UTI.

Secondly I start taking the anti biotics immediately. I always have at least two courses of the anti biotic which it was determined four years ago deals with my type of UTI. It then takes about seven or eight days to clear.

Thirdly because I was still getting them frequently (a problem from self catherisation makes it more prevalent) I now take a prophylactic dose every day of the anti biotic. There are differences of view about this amongst the medics but it has worked well for me and lengthened the time between attacks,

I suppose a fourth stage is I contact either urology or my GP to confirm what I have had and if I remember to take some urine in a bottle before I start the anti biotics they can then test it to confirm.

Over time the medics have trusted my judgment on this and though I have not eliminated UTIs I get at them very quickly before they get hold and thus minimise the impact.

I have to take control as I am on my own and cannot risk becoming too ill before action can be taken.

I cannot speak for John but I now kinda know when a UTI is starting. I always carry around the dip sticks and the course of treatment if I am away so treatment starts instantly.

Hope that helps and hope the anti biotic deals with it and John gets relief.

User

Posted 05 Mar 2016 at 11:31

Poor old NHS, born the same year as me and also feeling the years. What a run around you've been given

Sometimes Allison, we have to take charge of our other halves, especially in your case with a husband on the Stoic side.

I think Paul's way of keeping up with it (ie the dip sticks) is very good.

My poor sister had all of this with her husband. Nobody was interested, there was no cohesive care.

The district nurse doubled as the Macmillan but was most inefficient. When she finally called in, after frantic, then angry calls from my sister, they would find that she either hadn't brought the right bits of they were the wrong size.

Because my sister then became (rightly) a little stroppy at the lack of care and foresight, they became even more unhelpful.

I hope you can get something sorted

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

User

Posted 05 Mar 2016 at 22:26

Thanks guys

I feel like I am moaning a lot but thanks to the fantastic advice and information given here, I am now sure about buying some dip sticks. Several friends have mentioned doing this and this seems like a good step. I have said to John that in future we will say he has a discharge (he did mention this, he was getting pus coming out of the penis, yuck), he has also been primed to say he has pain, which he did but as he always has kidney pain he didn't think to mention it. Forewarned is forearmed, we do have the consultant's private mobile number but don't want to ring him for something like this, it should be easily sorted really. I know (as I'm on the patient group at our practice) that this is a funding issue. The District Nursing team gets funded to look after catheters, not the GP, hence the battle over who does what. The trouble is that there are not enough district nurses to cope and they told me that they only come out to the bed bound. When I offered to take John to the clinic they refused!

Thanks for telling me how it is for a single person Paul, I think that you have a sensible approach to it and you are an intelligent person, so no doubt that helps. Having an SPC we were told to expect potential infections, we are very careful with hygiene and John has barely left the house since the last op (he's finding the leg bags a real struggle and he is constantly itching, which is a sign of kidney damage (according to Mr Google)).

However, he's getting better again and that's a relief. Next time I won't allow this to happen. Kidney and bladder scan on Monday will see what's happening to those areas anyway.

Thanks all

Lots of love

Allison xxx

Edited by member 06 Mar 2016 at 19:26 | Reason: Not specified

User

Posted 06 Mar 2016 at 12:37

Hi Allison,

What a terrible situation for you and John.
UTIs can be painful, very dangerous, long lasting, and finding the right antibiotics which will actually work is so difficult.

Generally, it's only by trial and error that you find the right combination.
For instance, the likes of Amoxycillin are of no use at all.

I have to say, Paul's posting was spot on. Self testing is the answer, along with finding the antibiotics which will help John's particular type of UTI.

You just can't beat being pro-active at all times.

I do hope that you can now get on top of this and prevent such unnecessary suffering in the future,

Warmest wishes,

George

B2PCa

User

Posted 06 Mar 2016 at 22:07

Hi Alison,

So glad to hear that John is improving, I totally emphasise with what it is like battling the powers that be to get things sorted, or maybe that should be the powers that don't. It just makes life so much harder (especially when it is hard enough already).

Moaning certainly not my friend.

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 07 Mar 2016 at 21:28

""(he's finding the leg bags a real struggle and he is constantly itching, which is a sign of kidney damage""

Is the itching related to the leg bags or is that a separate issue.

Thanks Chris

User

Posted 08 Mar 2016 at 20:23

Hi Chris

No, it's on the trunk and legs and side and lower back. He has had a lot of itching in recent years related probably to the cancer. The leg bag has now been ditched and the valve is being used again (yay) also he managed a small pee today (well a dribble but yay all the same), no pain this time (must have been th infection/healing) before. I can see a leg bag being useful if worried about particular situations but as a full time solution, it's not great. Anyway, he had the kidney scan yesterday, it's still swollen and we go on the 16th for a Change of SPC and also to review the kidney issues. We will talk about the constant itching then. Funny isn't it, one blessed annoyance after another but each time I feel things are getting better and probably that's why the itching is taking centre stage.

Cheers

Devonmaid

User

Posted 08 Mar 2016 at 20:45

Thanks for the reply, I was wondering if he had an allergic reaction to the leg bag straps or even the SPC.

Having even a small pee is at least a step in the right direction.

Hope things start to improve soon.

Take care of yourselves.

Thanks Chris

User

Posted 16 Mar 2016 at 23:39

Hi guys

Just an update from our consultant visit tonight. He changed the SPC, confirmed from the biopsy done after the TURP, the initial diagnosis of a Gleason 10, put OH on a low dose of antibiotics for the foreseeable future. He also told him to drop the Vesicare (solifenicin) as he thinks it's responsible for the intense itching and blurred vision. Also he diagnosed water retention in the legs and feet, which we have mentioned loads of times (swollen legs and ankles). He said this is why the night bag usually contains about 2 litres as when you lie down the water travels back to the heart and then put through the kidneys. He said that the left side pain is not the left kidney but is bone pain. The left kidney has improved since the TURP. We will continue with an SPC, but to clamp it off as much as possible and try to pee through the urethra as much as he can. He is only voiding 100mls through that but an improvement all the same.

All in all, a good result so far, slowly but surely things may be turning and maybe, in three months, the SPC can come out, no promises but lots of hope.

Cheers

Devonmaid

User

Posted 17 Mar 2016 at 00:03

Glad to hear things are a bit better with some positive news. Hoping it continues.

Best wishes

Rosy

User

Posted 17 Mar 2016 at 01:14

I really hope that this is the start of a better phase xxx

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

User

Posted 17 Mar 2016 at 06:45

Fingers crossed a corner is being turned

Bri xx

User

Posted 17 Mar 2016 at 06:59

I hope things continue on a more positive path albeit still distressing.
Chris x

User

Posted 17 Mar 2016 at 07:21

Good to hear there is some improvement and still having the SPC is a bit of insurance. My volume was pretty low for quite a while after my catheterisation but has slowing got better.

Thanks Chris

User

Posted 17 Mar 2016 at 10:24

Dear Allison,

It's about time John turned the corner, and I think his consultant talked a lot of sense. So good to see your hopes very much restored after so many long, painful months.

Positivity shines through your post, just in time for sunnier, happier days.

Warmest wishes to you both,

Never surrender,

George

Edited by member 17 Mar 2016 at 11:45 | Reason: Not specified

B2PCa

User

Posted 17 Mar 2016 at 10:55

Allison

so very happy to hear that things really are improving, that is quite a Z bend you have been through this last year. Defiance in the face of adversity and the love of a fabulous wife and family seems to be working so far!!

I hope to see you all soon

xxxxxx

User

Posted 17 Mar 2016 at 14:05

Sounds like short steps in the right direction. Hope it continues. Thinking of you!

User

Posted 17 Mar 2016 at 19:57

Hi Allison

So lovely to read your latest post. Hope things continue to improve for you both. Maybe a relaxed trip to the seaside and a few glasses of wine maybe in order. We've been having some beautiful sunny days of late.

Take care

Lesley xx

User

Posted 18 Mar 2016 at 15:30

Hi Alison,

So glad to hear that things are a bit more positive, at least you have got more answers. Time to breath again.

Lots of love

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 18 Mar 2016 at 18:54

Glad that life is finally on the "up"

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

User

Posted 19 Mar 2016 at 21:30

Ah well, another infection, more antibiotics, the low doese ones haven't been scripted yet, so thank goodness for the out of hours doctor service. Lots of pain this time, although I did gently kick him when he was telling the doctor he was ok (he really isn't).

I must admit, infected urine stinks to high heaven, one sniff was enough for me today, straight on the phone, no messing this time.

No wonder he's been under the weather (ie bed bound) for the last couple of days. Only to be expected from what people here have said.

Cheers all

Devonmaid (I've stopped using my name as I noticed I'm easily found on the Internet and prefer not to be so visible) xx

User

Posted 20 Mar 2016 at 00:50

At least you know what you're looking for now and can respond quickly. I hope it settles soon. I know what you mean about names - I have avoided using my real name for the same reason.

best wishes

Rosy

User

Posted 20 Mar 2016 at 22:34

Devon Maid?

Blast I am all confused know (I know it doesn't take much) you can just call me sugar from now on🙃. I knew that would make you smile.

You are obviously on to these UTI s like a magnet (oh how our lives change) . So understand the underhand kick when they say they are fine, what is it with some men they can be in agony and always tell the GP I am fine crazy. 😁 But we love them.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 21 Mar 2016 at 09:27

Originally Posted by: Online Community Member

Devon Maid?
Blast I am all confused know (I know it doesn't take much) you can just call me sugar from now on🙃. I knew that would make you smile.
You are obviously on to these UTI s like a magnet (oh how our lives change) . So understand the underhand kick when they say they are fine, what is it with some men they can be in agony and always tell the GP I am fine crazy. 😁 But we love them.
BFN
Julie X

Don't we just, but God they can be frustrating at times eh!

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

User

Posted 24 Mar 2016 at 01:21

Hi Devonmaid,
just a little worried for you ... bad news for your brother now, on top of everything else?

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

User

Posted 24 Mar 2016 at 15:10

My brother (49) is having a CT scan next week as it's thought he has lung cancer, he's being fast tracked under the cancer referral scheme. He has weight loss, coughing up blood, shadows on the lung and has been poorly for five weeks now. It's very weird, the anti depressants mean I don't seem to feel anything much, it feels strange not to be on my knees with worry. I feel as though I'm heartless about it, maybe it's better this way Lyn. We will know for sure on Apr 4th.

J is recovering from his latest infection and is on the mend thank goodness.

Devonmaid

User

Posted 24 Mar 2016 at 15:53

It might not be the anti-depressants love - just your head protecting your heart. Next week seems like forever but will arrive regardless - let us know.

Good news about J though x

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

User

Posted 24 Mar 2016 at 15:57

That's a real shock for you, Allison.

I do hope things turn out well for your brother.

There have been some remarkable stories of recovery from Lung Cancer in the past few years.

It's a very good thing that you're on anti-depressants. otherwise this could have been one blow too many for you.

Of course you're not heartless - anything but!

Your pills must be doing a good job in keeping you on an even keel after so many years of unremitting stress and worry.

I don't mind admitting, I pop the pills whenever I know I'm 'sinking' and they have helped enormously during bad times over the years.

Good to hear John is on the mend. Long may his recovery continue.

Stay positive,

George

B2PCa

User

Posted 26 Mar 2016 at 21:39

Oh Devonmaid,

I have only just seen this so apologise for not commenting sooner. Who was the wise guy that said lightening doesn't strike twice. This is a double whammy . I have everything crossed that this is a mistake and your brother is fine.

That old saying that G only gives us what we can bare is a load of old tosh.

Thinking of you , lots of love, Rosy has the blanket so I can't share it at the moment.

BFN

JulieX

Ps if you have any spare tabs going I could realy do with an out of body moment.😉

NEVER LAUGH AT A LIVE DRAGON

User

Posted 27 Mar 2016 at 00:04

Hi Devonmaid,

I'm sorry to read about your brother, let's hope the results are good and it's something else causing his problems.

Anti-depressants have helped me cope better with life but do sometimes mean that I feel that I'm not showing the concern I should be showing about certain situations. But to be honest, not taking them would be far worse.

I do hope everything turns out ok, you don't deserve anything else to happen to add to your worries.

Just wanted you to know I'm thinking about you both.

User

Posted 27 Mar 2016 at 03:09

Hi Devonmaid

I am sending you the comfort blanket as it sounds like you need it.

Of course you are not heartless - as Lyn says you can only deal with so much at one time. Throughout David's illness we have had another serious issue (not illness) to deal with, and I have been very aware of the separate boxes in my head which I have only been able to open one at a time. I have felt that I must look as though I'm being very hard at times but it was the only way I could cope.

I am here in the middle of the night because I am now having to open 2 boxes at once and woke up with these thoughts banging around in my head. So my advice is compartmentalising the issues as you are, for as long as you can.

Lots of love

Rosy

Edited by member 27 Mar 2016 at 03:12 | Reason: Not specified

User

Posted 27 Mar 2016 at 12:10

what a beautiful post from Rosy with great advice too.

You are not heartless at all, nothing could be further from the truth. You have been through so much more than many people know.

I am thinking of you

User

Posted 27 Mar 2016 at 12:34

That comfort blanket has been on some journeys, its been here twice and its such a comfort.

I hope the news on your brother is the best it could possibly be.

Love to you both

Si xx

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

User

Posted 27 Mar 2016 at 19:49

Difficult times but if anyone can cope it is you A. Let's hope the news you get is better than you are thinking but whatever happens you will continue to give the support you have done for John. Thinking of you all!

User

Posted 27 Mar 2016 at 22:32

I am totally amazed, but not surprised, to see Rosy post here. Despite everything that has happened you still have the generosity of spirit to support others. And my other friends, I nearly had a tear in my eye but don't seem to shed those at the moment (for which I am quite grateful). My brother isn't holding up well at all, the wait for the CT scan is awful (we all know how that feels). It doesn't help that he feels very poorly and that he pushes people away as he can't deal with emotion. I e asked him to come and stay with us, we are calm people and could support him, but I don't think he will.

Thanks so much for the kind words xxxx

User

Posted 28 Mar 2016 at 19:53

Hi devonmaid

You deserve kind words. You are doing a wonderful job looking after your husband, glad to hear he is recovering from his uti.

Sorry to hear you have more worries with concerns for your brother. I too dont believe you are heartless, far from it!! Whatever way you deal with what life throws at you is right for you at that particular moment in time. I wouldn't be concerned about not shedding tears. And if anti depressants are helping you, keep taking them.

Take care.

Lesley xx

User

Posted 05 Apr 2016 at 09:02

Hi all

Well my brother has had the CT scan and it doesn't look like cancer, it's a blood clot and swollen lymph nodes. He has been put onto heparin injections for six months. This is incredibly lucky, this clot could have killed him at any moment. He has to be reviewed in six months because of the lymph nodes, but I think that's probably due to his chest infections.

Hubby hasn't been well these last few weeks, pain is increasing, urine output has slowed. Hoping a bit of sunshine will lift his spirits. Come on Spring.

Lots of love

Devonmaid xx

User

Posted 05 Apr 2016 at 09:32

Good to hear the news about your brother. Keep an eye on that flow rate, God forbid anymore catheterisation, are you actually measuring the flow ? I measure my first morning urine flow most mornings.

Take care.

Thanks Chris

User

Posted 05 Apr 2016 at 10:49

Hi Chris

This has got so annoying with this page not found malarkey whenever you get to the end of a "page" argh! Moderators/Sadie please help.

The flow is much slower Chris and the output is around 100mls a time during the day, he hasn't tried to "finish off" With the catheter for a while so I've told him to try that. That's dropped from 150mls per urethra a time. He looks unwell but he is now on his low dose antibiotics so that should help.

Love

Devonmaid

User

Posted 05 Apr 2016 at 12:41

Fantastic news (well, not fantastic but so much better than it could have been) about your brother!!!! What a relief for you all.

Re Mr Devonmaid, just keep a little eye on his ankles and calves - it would be easy in amongst everything else to put dropping urine output down to the known problems and miss a new problem emerging.

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

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