Well I never

User

Posted 22 Jun 2016 at 08:42

Well what a day, I got the call to pick him up at midday yesterday as although he was in a side room, the noise a dementia patient was making all day and night was too much to bear. So it went like this, 7.5 hours waiting to get him admitted, 11 hours in the room with IVs etc then 7 hours waiting to go home. What a mess our NHS is in.

Anyway, he does look a little bit better from the fluids and he's been given two weeks of antibiotics (GP gave him 3 days), back in Tansulosin and Vesicare so I'm hopeful that this will have sorted it out and now he just needs to recover.

He is still asleep so I'm not sure how he's feeling this morning but he did sleep and that's what's needed now.

I can't say there was any rest for me really, I needed to give our bedroom a decent clean as he's been occupying it for nearly two weeks, had just about finished when the call came in. I must have been very wicked in a former life, I hope I had fun!

Lots of love and thanks for the page turning help, when will the forum sort that out?

Devonmaid xxxxx

User

Posted 22 Jun 2016 at 09:23

Hi,

I hope this helps to improve things for him.

Take care of yourself too. It doesn't matter if certain jobs get left for another day. Use your time for what really matters.

Steve x

User

Posted 22 Jun 2016 at 11:37

Shocking - I am thinking about you both xxx

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

User

Posted 22 Jun 2016 at 13:21

Our poor NHS, our poor patients.

When you complain about the poor dementia patients on the same ward the staff will point out that there isn't anywhere else for them.
Been there twice.
One poor old lady was fed chocolates all afternoon to bribe her to be quiet. Come the evening/night she couldn't understand why she couldn't still have her choccies and cried and screamed all night for them. Horrible for everyone.

Your husband may feel more contented at home now he has some relief, although I know that it puts extra strain on you.

Thinking of you

Edited by member 22 Jun 2016 at 13:25 | Reason: Not specified

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

User

Posted 22 Jun 2016 at 14:59

I do feel sorry for everyone involved in dementia (both my mum and MIL suffered), my poor little mum was attacked by a male dementia patient in hospital, I threw myself over my mum to save her from his assault. He was also naked, his poor wife was beside herself as she couldn't control him. There were not enough nurses for the dementia patients, though they were all in the far end of the ward. The other man took his coffee cup, deliberately broke it and charged at the nurse with the cut handle. I couldn't leave my mother at all, who was bed bound with a broken hip. It wasn't safe for her.

When John was in hospital at New year there was a lady crying "help me" all day and night. It was pretty awful for the other sick patients and the staff. Certainly no rest was had by anyone. I don't know what the answer is, especially as the NHS does feel creaky at the moment, but I can't see how it can be good for the other sick people to be kept awake endlessly. I did read somewhere that the medics are not allowed to sedate people with dementia, even though it would make sense to give other patients and staff a break from the endless shouting. The poor person with dementia must feel very frightened too.

Part of me feels like there needs to be separate ward for them, but with the right level of supervision or security. My mum used to speak very loudly and very embarrassing her conversation was too. Another sign of the times perhaps?

I don't know how the medical staff bear it either.

So however tiring it is to care for someone at home, I guess I know where he's likely to improve most now that the medical treatment has been done.

Home is best xxxxx

User

Posted 30 Jun 2016 at 10:21

Just an update. Nothing much has changed here, still having yucky stuff coming out of the penis, still horrible and painful bladder spasms, still can't wear any clothes because they rub and make his penis sore (I've bought him a nightshirt to wear around the house).

I've emailed the consultant again today, we are starting to rue the day we thought the RT would help. Still trying to see the long game but finding it hard.

It's been a month since the last RT, he's still on antibiotics and still in pain. Let's hope a further month will see a change. My BIL and his wife are coming to stay for 11 days (they live in Sweden) today, I'm looking forward to and dreading it by equal measure. Both of us feel exhausted and I feel lots of takeaways coming on.

I don't think all this blinking rain and doom and gloom help, come on summer, we need you!

Love Devonmaid

User

Posted 30 Jun 2016 at 11:30

Oh dear. What is there to say? Let's hope your consultant comes up with a brainwave and quickly! In the meantime your fighting spirit still shows through. Will your BIL be helpful and give you a chance to take some time out? Hang on in there and order those takeaways - nuts to healthy eating!

Rosy x

User

Posted 30 Jun 2016 at 11:46

Hello DM.

I'm so sorry that your husband's infection still hasn't been sorted. Silly question probably, but are they trying different antibiotics? Has he been assessed for what strain of infection it is? They must have done I know but........

The thought of 11 days of entertaining guests at the moment may well seem daunting and too much like hard work but your BiL and his wife can help in lots of ways. Sometimes just having others there in the conversation can be useful, not to mention the physical help they can give.

Takeaways? Well, let's face it, they can't be that bad for you in the short term and as long as your husband is getting his nutrition from somewhere it's got to help.
You can go back to healthier eating when they are gone.

I hope you all have a good time and it isn't all too stressful for you

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

User

Posted 30 Jun 2016 at 13:18

Dear Allison,

This is such an awful time for you and John, and like others, I am shocked and dismayed by the dreadful experience he had when he was in hospital. It's also a terrible thing to have to cope with UTIs. How on earth could a GP think that 3 days supply of antibiotics could clear that?

It can take our guys trying 3 or 4 types of antibiotics until one finally does the trick,

I do hope another month will see him come through this, infections and pain gone. Keep on playing the long game, please.

As Sandra said, perhaps the visit of your family from Sweden might actually hep you both.

It will take you out of the current, very wearing, daily routine and life will be different and hopefully much brighter during their stay.

Warmest wishes to you both,

George

Edited by member 30 Jun 2016 at 13:19 | Reason: Not specified

B2PCa

User

Posted 30 Jun 2016 at 15:19

Perhaps another silly question, have they taken a swab of the gunk and sent it off with a urine sample to be cultivated ?

Try and get a bit of "me" time during the BILs visit.

Thanks Chris

User

Posted 30 Jun 2016 at 20:30

Can't get used to calling you DM so I am trying A maybe I will feel better with that, what can I say other than you are going through a poop time at the moment I think about you and J everyday . One thought that has cropped up in my mind is the years that Trevor suffered with his asthma he had numerous infective Auntie Bs for chest infections I am sure you remember my frantic posts . It was the breathing issues that made him so low when he was admitted with the phenomena and they sorted out the different antibiotics that has made such a difference . Hoping this will be the case for J.

Lots of love

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Jun 2016 at 21:07

In France feeling helpless.

You are both stron and you will get through this. Having family to stay should lift your spirits and give you a break, but you have to let that happen.

Thinking of you

User

Posted 30 Jun 2016 at 22:41

Hi DM

Sad to hear things are still not the best for you and Jon. I would be iclined to agree with sending a repeat urine sample and penal swab off, and maybe change in antibiotics is called for.

Really hoping that your visitors will bring some smiles and happy times for you both.

Take care

Lesley xx

User

Posted 30 Jun 2016 at 22:54

Devonmaid, I can't remember what support you have apart from the hospital team & district nurses but if not already done so, it may be time to step up the involvement of the local hospice or Macmillan nurses? I am worried for you that the recent RT is a red herring clouding everyone's thinking and that this horrible problem is due to some other cause - the district nurses are important but not specialists and the hospice staff may have a different way of thinking or at least some ideas of things that might help that no-one else has thought of. They may also be able to sort out the pain relief.

Honestly love, this has gone on too long and someone somewhere must have come across this before.

Hopefully it is John's brother rather than your sister's husband - at least then J can still wander the house while naked from the waist down!!!

Edited by member 30 Jun 2016 at 23:01 | Reason: Not specified

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

User

Posted 01 Jul 2016 at 00:08

Hi DM,

I'm really sorry things don't seem to be improving for J. I hope (and pray) that they do.

I'm not expert enough in these matters to offer any useful advice but I wanted you to know that I was thinking of you both.

If I could be of help to you at anytime, I'm not that far away, please let me know.

Steve x

User

Posted 01 Jul 2016 at 05:20

hi DM
cant ass any further advice but am hoping that you get the improvement you both need, you sound worn out and the help from the family arriving will help you get a bit of rest

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 01 Jul 2016 at 18:23

Hi all

The latest situation is that I emailed the consultant again yesterday and he phoned John and did ask him if he wanted to go back into hospital, which he refused. So the plan is to see him on Tuesday at the hospital and possibly admit him then (gives me time to arrange it through BUPA if necessary as I'm still a member through work). He did say he had discussed John's case with colleagues and has some ideas he'd speak with us about on Tuesday. We are scheduled to see the oncologist ion Monday, it's been put back twice already as John hasn't been well enough so we will try to go.

He's still the same, can't stay up long, feet and legs filling up with water, bags getting blocked occasionally and bladder spasms. I've bought him a few nightshirts so that he can be decent, he's asking for a nightcap and candle, cheeky beggar.

The infection has been identified at the GP but I don't know if the hospital are aware, I'll check on Monday. The gunk hasn't been swabbed, probably that is needed.

Lyn, I asked if I could ring the hospice nurse and was told yes then no (by John) As we are seeing doctors next week I'm prepared to leave it for now, but I think we do need some support.

Our visitors are here and at least they made him smile. Lucky me, I live close to an M&S so we will be living in prepared food and takeaways as I have no interest at all in cooking at the moment. They have helped to tidy the kitchen and that's the main thing I worry about. I'm sure they'd run the Hoover round if I asked but they are popping to Bristol for the weekend so we have a couple of days of rest.

Thanks for the kind words everyone, it really helps.

Love Devonmaid xxxx

Edited to clarify who said no to the hospice nurse

Edited by member 01 Jul 2016 at 22:21 | Reason: Not specified

User

Posted 01 Jul 2016 at 19:44

Well it's good to hear John's still got a sense of humour despite everything. I couldn't help laughing at the thought of him in his nightgown, cap and carrying a candle!

I do hope the BUPA option works out. At least then he could be admitted and be properly sorted out without the trauma of disturbances from other patients.

Have they come up with any drugs to relieve the bladder spasms? I used to work with children who were bedwetters and they sometimes used drugs such as oxybutanin for 'sensitive' bladders. I don't know if it would be appropriate for John. I'm surprised they haven't done a swab - this has been going on for ages - surely that's just common sense? I'm also curious (nosy) to know who said you can't phone the hospice nurse. I asked our GP to refer us long before the hospital ever mentioned it and I used them as a sounding board. I know they communicated with the hospital once they were involved, but in my mind it was an independent service and we used it as such.

It's good to know the visitors are proving useful. Use them as much as you can - they can go to M&S and get the food while you put your feet up. Or you can go and then sit in the coffee shop while they sit with John. Do take care of yourself though. You'll be no good to John if your exhausted.

Thinking of you

Rosy x

User

Posted 01 Jul 2016 at 23:38

Hi Allison

Sorry to hear what you and John are going through, I hope things improve next week

Barry

User

Posted 02 Jul 2016 at 07:37

hi DM
the nightcap and candle made me laugh and think of Scrooge, good you had a couple of visitors and Tuesday we hope will bring some fresh treatment

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 02 Jul 2016 at 07:56

Hi Alison

Sorry to hear that things are not improving, sometimes this bloody disease does my head in, there is no rhyme or reason, all the people on here that have had mets and not two have responded the same.

I hope the visitors get stuck in to take some of the pressure of you.

We all send our love to you and John.

Si & the gang xx

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

User

Posted 02 Jul 2016 at 10:10

Hi DM

Hang on in there DM. I admire all you are doing for jon. Gp should be able to change antibiotics if necessary on Monday. Good to see your visitors made Jon smile and they do sound pleasingly quite practical.

Hoping Jon will be feeling better soon.

Take care

Lesley xx

User

Posted 03 Jul 2016 at 18:24

Hi DM

Wishing you and your husband all the best for his upcoming appointments. I hope he finally gets some answers as to what this awful infection is and get on the right treatment.

Sending love and positive vibes to you xx

User

Posted 04 Jul 2016 at 19:53

A really hope that things are improving for J I keep looking out for some positive news from you.

Lots of love

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Jul 2016 at 20:07

Yes, how did it go today love?

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

User

Posted 04 Jul 2016 at 20:51

Nothing much happened today Lyn, it didn't surprise me as really we need the urology people to share their plan with us and that's tomorrow. Onco said he thought that the RT could be causing some symptoms for up to six weeks, so John felt a little better at that. We have to go back in 5 weeks by which time it should be clearer whether the RT has worked. It was a struggle to get John there today but he seems cheerier tonight, so that's a good thing. Will update after our evening appointment tomorrow. If he does get admitted I've cleared it with Bupa that it will be in the private wing. I might as well use my company's private health care while I've got the option.

Love

DM xxx

User

Posted 05 Jul 2016 at 22:51

Well we had to wait for two hours to see our private consultant, he's a surgeon and had been called to an emergency op so we just regarded it as a rest from the rellies. So, long story short. He has offered three possibilities, one, do nothing, not really a genuine option as John would lose one or both kidneys taking this route. 2, do the stents through the back and keep coming back for more every six to ten months or 3, a rerouting of the ureters, bypassing the prostate and direct into the bladder. This is the biggest op but likely to be our favoured route.

As John has picked up a little over the last two days, he remains at home but with strict instructions to go out every day as he needs to build his strength. The urologist doesn't think he needs more antibiotics but he just needs to heal.

All in all, we do feel pretty ok about things, and will decide about which op over the next few days.

Love Devonmaid xxxx

User

Posted 05 Jul 2016 at 23:06

Very glad to hear John is feeling a bit better and here's hoping it will continue! Good luck with your decision making too.

User

Posted 05 Jul 2016 at 23:23

Glad to hear J has picked up a bit. Your resilience does astound me, too "feel pretty okay" about the choices is amazing. I am sure you will come to the right decision on which way to go. Thinking of you.

Thanks Chris

User

Posted 06 Jul 2016 at 09:28

Hi DM,

Glad to hear you have a plan to work to, this in itself must be uplifting for you both. Hope he continues to build his strength up.

Lesley xx

User

Posted 06 Jul 2016 at 11:12

as Baldrick would say 'what we need is a cunning plan' and as you say the last option may just be this, lets hope its the most cunning plan ever

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 06 Jul 2016 at 15:40

At last a plan of action you will make the right choice when the time comes I am just so glad that John Is feeling stronger.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 06 Jul 2016 at 23:02

Originally Posted by: Online Community Member

as Baldrick would say 'what we need is a cunning plan' and as you say the last option may just be this, lets hope its the most cunning plan ever

regards
nidge

Preferably without any turnips?

User

Posted 07 Jul 2016 at 17:37

Hi Allison. Can they do a more permanent stent, it's more upheaval having them replaced and they can fall out anyway. At least with the other option it sounds like one off and once done that's it. Really feel for you, had all this scenario too. Anyway, you are in my thoughts,

Fiona. xx

User

Posted 17 Jul 2016 at 22:08

Good evening my fellow forum members, today has been our 40th wedding anniversary. I was a very young bride of 19, back on that boiling hot day in 1976. I am grateful we have made it to this day, certainly five years ago the odds were stacked against us. We were not able to go out to celebrate because John is still unwell following his RT but it's a major milestone and we managed to simply be happy to be together after all this time and a horrible cancer diagnosis five (nearly six) years ago.

I've been trying to practice gratitude, since I do believe it makes you happier and I am deeply grateful for those 40 years (where did they go?). I'm not greedy, I only want another 40, it's not tooooo much to ask is it?

No seriously, I did manage to raise a glass or two thanks to my lovely family, John doesn't drink these days and drinking alone is not much fun but someone had to do it. I chose a wonderful man all those years ago, when I was a green WRAF lassie and fell for the lovely bloke in the airforce blue suit (ok uniform), with the lush tash and leather bomber jacket. He hasn't changed really, though the hair is now white and the bomber jacket got lost years ago.

For those suffering loss today I have shed a few tears for you (and maybe a few for us too), but still think it's quite an achievement these days, to still be happily married after all these years.

Love to you all

Devonmaid xxxxx

User

Posted 17 Jul 2016 at 22:33

Many congratulations, and many more to come

Best wishes,

Arthur

User

Posted 18 Jul 2016 at 06:25

Congratulations to both of you for yesterday. 40 Years is a great achievement. The time just goes so fast doesn't it. We got married in 1969 so a bit ahead of you.

I do remember the heat of '76 though. We must have been one of the few families that raging hot summer that got washed out when camping. So wet, inside and out of the tent, that we had to go home very early !!

Story of our lives that is.

Again, congratulations and hopefully many more to come ( whisper - I think another 40 is a little optimistic given our ages - but we can hope eh!!)

*********

Edited by member 18 Jul 2016 at 06:26 | Reason: Not specified

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

User

Posted 18 Jul 2016 at 06:36

Many congratulations to you both.

I remember that summer - it was when David and I met. I was also working on a burns ward wearing a gown and mask on top of an old style nurse's uniform, starched collar and apron etc! The sister allowed us a single glass of squash during our shift as it was so hot. So the NHS has moved on!

As you say 40 years is a major achievement and I wish you much more happiness to come (but as Sandra says maybe another 40 is pushing it)

Much love xxx

User

Posted 18 Jul 2016 at 06:51

Congratulations from me too. Know what you mean about the drinking, I've stopped now and my wife often says she wishes I hadn't !

User

Posted 18 Jul 2016 at 15:44

DM,

Many Congratulations on your 40th Wedding Anniversary and thank you for a lovely post it has brought tears to my eyes.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 18 Jul 2016 at 18:57

Hi DM

Wow! 40yrs married, that is a great acievement in this day and age. Congratulations to you both.

If i'd have realised you were drinking on line last night I could of had an excuse to join you, then you would not of been drinking alone! Hope you haven't had too much of a hang over this morning

Lesley xx

User

Posted 21 Jul 2016 at 11:03

Hi all

Just an update, I've got a big birthday coming up this September so was looking forward to a small celebration. Hmmm, an Open Ureterovesical reimplantation on the 6th to prevent kidney failure will put a stop to that! Ah well, I'm not a huge fan of celebrations as I prefer doing something quiet, just as well really.

Off to get bloods done shortly, hospice nurse came round yesterday and recommended steroids for a couple of weeks to give John some energy, he's utterly knocked out by the RT, anyway she called our GP surgery with the list of symptoms and they said, no, they wanted to do a full blood work up. They suspect that he's anaemic (well we know he is but how much is the question) and he's got a lot of itching which could indicate kidney or liver issues. So sensible approach by the GP, managed to get an appointment for the bloods today but the joke is that no appointment is available for the doc to review for three further weeks. Of course I won't leave it at that but it made me laugh as it was the doc that requested that I drag him down there.

Fun and games down in Swindon.

Lots of love

Devonmaid xxx

User

Posted 21 Jul 2016 at 11:20

Ah! Doctor's surgeries and their appointments eh. At my daughter's surgery, you are not allowed to make appointments in advance, you have to ring on the day and if they've run out then you have to ring next day!

As for special birthdays and celebrations, well what about celebrating it a bit earlier if your other half is up to it.

Let's face it though. It's just another year isn't it. Every day is a celebration

*******

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

User

Posted 21 Jul 2016 at 18:49

How about having a treat a day throughout September? I'm sure everyone here agrees you deserve a bit of pampering!

Re the blood results surely the doctor will be contacting you once they come in (unless of course they are perfectly normal)

User

Posted 21 Jul 2016 at 19:06

What a great idea Rosy, fingers crossed for better times ahead.

The doctor wanted to see John before he authorised steroids, hence the bloods etc My thoughts are that he needs to be seen anyway, whatever the blood results. He's suffering very badly from bladder spasms, which are excruciating. Anyway we do have the contact details foe the urology consultant so that's my fall back position. I'm sure he will be seen by the GP, there are always lots of cancellations on the day. They will obviously contact us if the bloods are deranged anyway. I always find it weird that GP bloods take 7-10 days to come through but hospital ones are done on the same day. Strange.

Love

Devonmaid xxx

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