Low sodium 120. Hyponatremia?

User

Posted 21 Sep 2018 at 22:01

I've updated my husband's profile to reflect where he is regarding treatment plans etc.

Blood test yesterday to confirm whether he is able to start Abiraterone on Monday. The hospital ring today to tell him that he can but that his sodium levels are a little low at 120 (I'm not sure what the unit of measurement will be) and that he ought to add more salt to his diet and they will retest this in 2 weeks to see if it has improved.

So me being me, I've looked this up on the www and I haven't really liked what I've read!

Sometimes I shouldn't look....anyone else with this symptom and how have you managed it?

My husband is not a drinker, he hasn't fancied a beer for weeks, he doesn't drink gallons of water a day, usually a few coffees and a couple of glasses of water to accompany the macrogol twice daily.

User

Posted 22 Sep 2018 at 07:39

I've searched the forum but only found one brief mention in 2015.

Do other peoples oncos show you the screen with scan results etc, do they talk you through it all or is it that you ask to see?

I feel like I don't know enough.

User

Posted 22 Sep 2018 at 09:28

Hy Kentish we were in shock at first Onco app. so didn't ask alot of questions.When your told you have an aggressive cancer it's no wonder but after awhile we asked at each app.and Onco was brilliant at explaining everything and also showing us on the scans where the cancer was .This forum will also help you with any questions.Take care.Geoff

User

Posted 22 Sep 2018 at 13:50

I don't think you need to panic. Have you been trying to get him eating more healthily? You may have knocked too much salt out of his diet. Is he exercising more or drinking too much water? Have you had a summer of salad eating?

Bags of crisps or nuts are a good source of salt if he doesn't like it in his good.

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

User

Posted 22 Sep 2018 at 15:06

Hahaha Lynn, "healthy eating" and my fella are strangers to one another!

Our diet hasn't really changed much apart from dropping the red meats and trying to cut down sugar as it definitely; along with caffeine, triggers hot flushes if consumed in fairly large amounts.

We've always had a fairly consistent diet, regular veggies, fruit etc. He's certainly not exercising much, he's feeling pretty rubbish most days and doesn't really drink lots of water. Mostly coffee and the odd squash.

He's more of a biscuits for breakfast kind of man and then a bit of toast for lunch. He'd much rather eat a bag of crisps than a sandwich!

I'm hoping that the low salt is what's been making him feel a sickly and that it will improve with adding salt to our food.

Fingers crossed.

Banjo,

My husband doesn't want to know the fine details, this makes it hard to ask in appointments. I want to support his "let's just get on with living and ignore stuff" style but I also really really really want more info at appointments. I have emailed the Secretary with questions before but I'm not sure what I want to ask this time.

I think I'm just not feeling very optimistic at the moment :(

User

Posted 22 Sep 2018 at 18:38

Banjo, this might be way off beam but I have a hunch that your husband may just be dehydrated. I've experienced bouts of that myself and found that I felt a whole lot better when I upped the fluid intake. The 2L a day rule works for me. It doesn't have to be water but t

for heaven's sake don't get poisoned by the caffeine! He'd probably quite like a couple of beers a day and some crisps to make sure of the sodium intake, too!

User

Posted 22 Sep 2018 at 20:45

I'm sure he'd be happy with beer and crisps!

He's settled for take away Chinese this evening with a bottle of coke, possibly the least healthy way to increase his salt intake.

I thought low sodium was because of excess water diluting the sodium in his blood stream, not through dehydration but I'm not sure.

User

Posted 15 Oct 2018 at 20:02

Update:

OH admitted to a ward yesterday from a&e.

He had a uti a week after starting Abiraterone and was given an 8 day course of nitrofurantoin. On the 7th day he had a urine dip and blood test to see if it had cleared but also to check if his sodium was still low. It was, 120, same as the week he started Abiraterone and the urine showed no infection.

However, all this week and last week oh has grumbled about poor urinary flow, frequent trips, never feeling empty. We have an appointment in early November with the urologist to look at solutions.

On Sunday, we were at our caravan, a 100 miles from home (and our hospital) when oh experienced severe pain in his penis and a constant urge to pee. There was a substantial amount of blood in his urine and he started passing small clots. I rang the onco unit and they said if we were coming home do so, or if it got worse then go to any hospital. Oh made it home and bled all over the toilet and passed some horribly large clots, the size of a small finger. I rang the unit again and they booked us into our local a&e as a priority.

Whilst in the triage room, oh passed the biggest clot and then the flood gates of urine opened, bless him, the look of utter terror and agony was replaced by one of true bliss! He said he felt like he'd been blocked by something for ages but thought it was the prostate or cancer restricting the urethra but it seems like it may have been these clots.

During his blood test his sodium was measured at 116, this according to nbli is in the life threatening range. Oh was admitted and we spent a pretty grotty night in a&e waiting for a bed.

They treated him with a bag of saline and then restricted his liquid to see if it would concentrate the sodium.

Today on the ward, his sodium had only risen to 118, so he's in for anther night as it's too risky for him to come home.

I can't remember the name of the antibiotics but they have given him a stronger one for the uti and for 21 days.

They have also prescribed a sodium supplement.

An oncologist came to see oh to say they were trying to find the cause of the low sodium.

Keeping it together for the kids but feeling like I'm going to unravel into a snivelling heap at a moments notice.

User

Posted 15 Oct 2018 at 20:36

This is not a great situation and I am sorry that you seem to have one blow after another. Hopefully they can explain what is going on before you bring him home.

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

User

Posted 16 Oct 2018 at 14:16

Sodium is up to 122 but waiting for urology and oncology to assess oh.

Waiting....

User

Posted 16 Oct 2018 at 18:31

....and discharged.

"We can't see medically that you have a urine infection at this moment. Keep your appointment with oncology tomorrow and urology in November for them to investigate further."

Oh is taking a tin of chocolates up to the medical ward to say thank you, the nurses were very kind and although it was very busy they took the time to listen to us and the questions we had.

For others out there, don't always put your fatigue and confusion down to chemo brain and hormone therapy. Sodium levels decreasing slowly meant that it just seemed oh was getting poorlier, down at 116 he was very unsure of what was going on and kept repeating himself.

Left for a long time at low levels the damage can be permanent.

I think I've found my voice, this experience has taught me to write the questions down as I think of them and to not be afraid to ask for more information as to "why" a test is being done.

Abiraterone assessment clinic tomorrow.

Hopefully he'll be allowed to continue. Xx

User

Posted 16 Oct 2018 at 20:36

Also, antibiotics stopped and sodium stopped.

Antibiotics because there is no evidence of infection and sodium because until the cause is found, the type of treatment is unknown, adding sodium could make it worse.

Oh also had a chest xray, all clear, which is probably the best bit of news we've had for months :)

User

Posted 17 Oct 2018 at 19:27

Update.

Attended pre assessment clinic for 2nd cycle of Abiraterone .

On the discharge letter it said oh had an outpatient appointment with the oncologist who visited him on the ward on Monday.

I wrote my list of questions and mentally prepared my self to be firm and insistent until I felt we had a clearer picture.

I got home from work and oh said he was bleeding again and passing clots. I rang the clinic and asked if we could come earlier for someone to assess whether he needed to be readmitted.

We arrived and I bumped into the Oncology nurse who had visited oh on Monday with an oncologist on the ward. I explained why we had come early and said we had an outpatient appointment.

It turns out that the ward had misunderstood Nigels clinic appointment and thought it was a doctor's appointment, there were no doctors to talk to.

I got a bit angry, I stayed polite but I reiterated that oh had only been discharged because the ward thought he was seeing an oncology Doctor today.

The lovely clinic nurse did her very best to get us some answers before we left but couldn't. Oh's consultants are going to discuss him at the MDT on Friday.

His sodium is still only 122.

On a whim I thought we should swing by urology on our way out, it was meant to be, the consultant oh is booked to see in November was still there and agreed to answer our general questions, nothing specific as he hadn't got oh's notes.

Urologist said it was down to the GP to find out why sodium is low, why didn't someone tell us this in August when it had fallen to 120, I don't know what it was before then, it may have been low for a lot longer.

Oh is to stay on restricted fluid intake until it has risen to 130--135

Oh is bleeding again and passing clots, consultants response "I'm not worried about this, it is common for prostate cancer, we will do a cystoscopy but there's no rush" I think if he had seen oh Sunday and earlier today passing these clots he may have been a bit more sympathetic, poor oh is in f*****g agony when passing them.

I'm not happy, I feel let down by all the departments as it feels like oh is being bounced.

On the upside, we're off to Wales on Friday for a fun week, I have checked where the nearest a&e dept is and whether it has a good rating for urology/oncology!

User

Posted 17 Oct 2018 at 22:03

Hi, I am in a similar position to you, my OH was diagnosed last November with spread to shoulder, spine, rib and hip. I also am not sure of numbers etc. and feel like I don't know/ask enough, but my OH does not really want to know as much as I do!

Have you thought of ringing the specialist nurses on here? They may be able to answer some of your questions easily. My OH has not had any pain and apart from after the biopsy has not experienced bleeding or passing clots. He is on HT, had one chemo. but it was stopped after that because he started with heart problems.

Thing is everyone is different and reacts differently to medication so what is 'normal' is difficult to say.

I don't know if the bleeding is common, or anything about the salt problem, but I would not think the level of pain you describe should be just accepted, I would be demanding more answers from someone, even my own doctors or failing them out of hours doctors.

I would try speaking to the nurses on here first though.

Hope you manage to find some reassurance, it's scary isn't it?

User

Posted 17 Oct 2018 at 22:24

Hi Kita,

Yes, you're right. It's scary, scary watching someone panting with pain, watching him become more confused and fatigued and not really knowing who to call.

I started my phone calls in Sunday night to the emergency chemo phone number we were given. Then we went to a&e, where you hope to find a solution. Then to a ward, where you also hope for a holistic view to be taken but he really was "patched up and dispatched"

I trusted that the short stay medical ward would contact urology and oncology and they would consider a plan.

I have rung the specialist urology nurse team and I am waiting for a call back. I don't think the level of pain and clots are acceptable or "common". But oh is adamant he is not returning to a&e unless absolutely necessary. So he has passed as many clots as possible, feels comfortable enough, has taken 5ml of morphine and has gone to sleep.

I will express my concerns tomorrow to the urology nurse and we will be returning to the clinic to collect the Abiraterone.

User

Posted 17 Oct 2018 at 23:16

I don't 'trust' anymore as regards communications between different doctors/departments. My other half was very fit before all this, I could write a book about all the mistakes made. The one that stands out was him having the same catheter in for 9 months, we did not realise they should be changed every 12 weeks! Then there was the GP who missed a urine infection that a nurse found three hours later!

I found I have to question Doctors luckily I am able to go to appointments with him and have learned so much from this forum, I don't post much as I don't know much!

I can understand about A&E it can be a nightmare!

I always think sleep is good, at least the immune system can try and fight without having to run other actions.

Never phoned the nurses on here personnaly but at least they would be specialised in the condition and can talk you through things and help you clear your mind.

Remember to take care of yourself as well as everyone else!

User

Posted 17 Oct 2018 at 23:31

Common error #1 is assuming that the different departments will liaise with each other - that is not commonly the case.

Common error #2 is not liaising with the GP; once hospitals are involved we just assume that everything goes to them but actually the GP is the person to deal with most of his medical needs and to liaise with the necessary specialists if it is beyond his / her expertise.

I can't remember whether you already have the palliative care team involved but I think you really need their support now. And once that is in place, he will hopefully be much happier about calling on the hospice team for advice rather than A&E when things like this happen

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

User

Posted 18 Oct 2018 at 08:14

Thank you ladies. It really is difficult to know which team to ring and what for. When oh started the Abiraterone we were given the emergency chemo phone number to ring if there were medical issues, so that's where I started.

I'm not happy with the urologist's "it's common, I'm not worried" as oh is still bleeding when urinating this morning, and is still passing clots. They are not as painful as Sundays but surely he can't continue to bleed unchecked!

I'm going down to the GP this morning and I'm going to phone the palliative team too.

I really want one person to hold all the strings for me! I'm not daft, I know that's not going to happen but wouldn't it be nice....

User

Posted 18 Oct 2018 at 11:12

Kentish

"I really want one person to hold all the strings for me!"

This is the fundamental weakness with the NHS. A total lack of joined up process.

I just had a flu jab at Boots and they told me to tell the surgery. I rang the surgery and the told me the chemist is supposed to fax them the details as they cannot take it verbally.

Don't ask me about the fact that no one told me cancer patients can get free prescriptions if we get the GP to sign a form amd I only found out by chance!

Keep politely persisting, chase up any drop offs they make and ask for a second opinion. It is your right. You can take someone with you for support if you do that.

Cross fingers

User

Posted 18 Oct 2018 at 18:29

Thanks Pete,

Good communication is sorely lacking between services. It shouldn't be but it is and I found that out the hard way.

I went to our gps when it opened this morning and cried all over the lovely receptionist who has known us for years, she squeezed me in to an appointment that I don't think existed so I could talk to gp.

Gp has known me for 35 years, knows im not a drama queen and is a very sympathetic ear. He listened to the whole story and how I felt oh wasn't getting a very good holistic service at this moment in time, how I felt that the urologist was too quick to send oh away with "bleeding is common, don't worry about it" and how I felt that I was lost in a sea of teams and I didn't know who to call first when an emergency happens.

I also rang palliative team and urology specialist nurse and requested they call me back.

Gp contacted oncologist secretary asking for more details of current treatment and whether oh ought to be readmitted.

Palliative care team felt that they couldn't do anything regarding the bleeding and that as gp had started contacting and asking questions we should wait to see what he says to do.

Specialist nurse was very kind and sympathetic on the phone as to how disjointed it all feels and how worried oh is about passing blood every time he stands up.

Outcome from a day of tears and phone calls is specialist nurse will ring with details from MDT meeting, quite possibly they will have oh in to do a cystoscopy and see if they can cauterise the bleed if it is only a ruptured blood vessel. If it isn't, we'll deal with that next. I reiterated again that to not know is the worst as you are always second guessing your decisions and your husband's symptoms. I will worry until I know either way.

Gp was very frank and feels that oh is deteriorating but onco felt oh's bloods were acceptable for another cycle of abbi. I cannot deal with two such extremes. It can't be both! They wouldn't treat him if there wasn't any point! I think oh is poorlier but his blood work is saying otherwise.

Haemoglobin 118

Sodium 122

Alps 195

Other than these 3, his tests were within normal ranges.

Sorry, I think I may have over done the !!!!! But I hope it conveys my anger, disbelief and distress.

User

Posted 18 Oct 2018 at 19:03

I would trust the GP's instincts over the onco - it is a big call for a medical professional to call a halt on the only active treatment left so they may continue with the abiraterone for as long as he can tolerate it. But I think that the referral to palliative care was already in the pipeline - did you previously post that you have an appointment in November with them? They may not be able to do anything for bleeding but by golly, they could be a source of information and emotional support to you.

Keep in mind that a small amount of blood can look horrific when diluted in urine; if he isn't weakened and / or anaemic then he is presumably not losing as much blood as you imagine.

What is his PSA doing?

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

User

Posted 18 Oct 2018 at 23:21

Hi Lynn,

No psa given, I think we were so focused on his sodium, nurse included, that it didn't cross our minds.

Oncology nurse said at the first treatment cycle that it can take 3 cycles before any downward trend is seen. I'll ask tomorrow when they ring me.

Yes, a little goes a long way in the urine, what's so worrying is that every time oh stands he passes a clot and urinates. He's exhausted, it's one more stress on top of what has been an extremely exhausting experience for him. He's decided to stay at home rather than risk the Welsh a&e and wait for the outcome of the MDT . We were supposed to be going away for half term with the kids, my brother and his family and my mum. But Wales is 5 hours from home. Right up until this evening oh was adamant we were still going in the morning but I think he's hoping they might be able to do something to reduce the bleeding. The kids are still going with my mum which gives me and oh some space and time.

We've been under the palliative team since June but not really had much to do with them yet. I have rung a couple of times for advice and they have pointed me in the right direction. I've spoken to them today and they also felt they couldn't really contribute anything until there was more information. They recommended I take nigel back to hospital if the bleeding hadn't stopped.

User

Posted 18 Oct 2018 at 23:23

We have a review booked for November with palliative care team. I don't know what this entails, I can ask about this tomorrow as well.x

User

Posted 20 Oct 2018 at 18:20

We made it to Newgale, stopping every 50 mins for oh to walk about and use a loo. The services on the m4 are very nice....but at 4.30 am oh woke me to say it was like last week and he wasn't passing urine any more. I rang for an ambulance to take us to a&e and they catheterised him there.

Good news, sodium up to 125, bad news oh has a catheter., good news, we've had a nice day as a family, the sun is shining and the scenery is stunning.

Oh is happy that the catheter has bypassed the need to use the loo every 5 mins but it's sore.

I rang the palliative care team for advice on how to manage it, they were very helpful and talked me through various scenarios.

The doctor at a&e wanted to take it out on Tuesday but oh doesn't want to. Care team said he doesn't have to but he needs to insist on it at a&e and perhaps they will show me how to irrigate it when the blood clots get stuck in the tubes.

My poor oh, he's really been through the mill this last week, I hope this week is better.

User

Posted 21 Oct 2018 at 17:00

Back to a&e this morning at 7am for a flush of the catheter as blocked with a clot. The lovely a&e Doctor who fitted it Saturday morning is on 7 night rota, we quite possibly will be seeing him again this week!

He showed me how to use the solution to flush the catheter and has given me 2 bottles to take away. I'm really hoping I won't need to do it.

Oh is happy for me to try if I have to, I'm amazed at his confidence in me.....

He's made it out of bed twice today, but is reluctant to get up and move about as his bladder goes into spasm.

We will be asking for some drugs to relieve this when we go back on Tuesday.

User

Posted 22 Oct 2018 at 21:38

After 2 days of antibiotics his urine is clear!

A&e Doctor said he had an infection and that if trimethropin didn't work then he would give something stronger.

Oh is like a different person, apart from the bladder spasms.

The confusion, apathy, reluctance to even get out of bed has gone.

I really thought we were having a crisis and this may be a step further down the road towards non-treatment and pain relief only.

I'm angry with our own hospital for stopping the antibiotics too early and for his care team for not checking whether the uti was back.

Another lesson learnt.

Oh is very happy with the catheter in terms of unbroken sleep. I think we had 5 hours last night, the longest stretch of sleep for months and he was looking forward to sleeping tonight with no interruption.

I don't think I've ever looked at urine with such joy as this evening when we had to shine a light on the tube to check it was there it was so clear!

User

Posted 23 Oct 2018 at 03:53

So glad it turned out to be a UTI, they can be really bad and cause confusion. The one my OH had that the GP missed had no signs except he was talking weirdly, he sounded believable to anyone who did not know him, but he was saying really strange things for him! Thankfully he had a urine flow test at the hospital and the nurse said he had an infection, i could have thrown my arms round her in relief as the GP had tested his urine three hours earlier and insisted there was nothing wrong! I was even begining to wonder if he had hit his head and not told me, it was that serious, almost like he had a head injury.

Hope you enjoy the remainder of your holiday, antibiotics really are a wonder drug when they work!

I have done more things in the past two years than i ever thought i was capable of, i am sure if it had come to flushing the catheter you would have coped! It is definitely a steep learning curve, especially if you are not used to dealing with hospitals, i had never been in my local hospital until two years ago, i recognise the staff now!

Make sure he takes the full course of antibiotics, he may need an extended course to make sure he is completely clear of infection.

Hope you get good weather and are able to enjoy the rest of your break away, at least you know the hospital is a good one!

PS Don't let him drink any beetroot juice or you will think the blood is back!

User

Posted 23 Oct 2018 at 07:40

Thank you Kita,

Your right, I certainly didn't know what I am capable of in this situation.

The bladder spasms plus the movicol meant for an "explosive" event this morning, before the first cup of coffee of the day!

Thank goodness for Tena extra pants. They caught it all and I'd cleaned him up in under 5 minutes. Oh was embarrassed of course but I hope I made him feel that this is just one of those things that you do for one another when needs must.

I agree with the antibiotics, they were going to give him 21 days of these last week but didn't after his "bloods" showed he wasn't fighting an infection. I agree with you Kita, I think they missed it as it hid for a couple of days.

1ltr of lovely wee produced overnight and several hours unbroken sleep. Sun's just coming up. Oh the most "normal" he's been for ages, I wonder how long he's had an infection for!

User

Posted 23 Oct 2018 at 15:16

https://www.alzheimersreadingroom.com/2017/01/alzheimers-health-an-undetected-urinary-tract-infection-can-kill-an-alzheimers-patient.html?m=1

The above talks about UTI in alzheimers patients, but it also explains how easy it is to miss, especially when there are other things going on. I once read that something like 80% of people with dementia in care homes have an undetected UTI, which is really scary. The carers just put the confusion down to the dementia. As you have found a UTI can have many symptoms, you are lucky in a way that there was blood in the urine as that is not always the case, my OH did not have it, the only symptoms were tiredness and a bit of confusion. I think if that nurse had not found it on the Friday afternoon I would have ended up in a&e with him on the Sunday. UTI's can take over very quickly and can be life threatening within days. Caught late and you have to be given introvenous antibiotics. Convincing someone who thinks they are fine but has confusion, to go to the hospital/doctors is not easy!

Hope you enjoy the rest of your holiday and get the chance to relax!

Edited by moderator 16 Apr 2024 at 09:25 | Reason: Not specified

User

Posted 23 Oct 2018 at 16:59

We wouldn't have known that his sodium was so low if he hadn't been bleeding, also life threatening.

He had intravenous antibiotics last weekend because a&e nurse said he had a uti. Come Tuesday, doctors said he hadn't so stopped the 21 days of trimethropin he had been prescribed on the Monday.

He's definitely feeling much better but he is very poorly anyway. Anything that can alleviate the additional problems that come with this disease need knowledge.

I really appreciate everyone's input as personal experience such as yours Kita is invaluable to those supporting their partner.

I won't take for granted that oh is deteriorating next time, and I will definitely ring several teams for opinions before helping oh decide what he wants to do next. (Regarding the catheter )

User

Posted 24 Oct 2018 at 16:55

Kentish, bear in mind that some antibiotics are not available in tablet form and have to be given via i/v drip. It isn't necessarily the case that having the drip implies that you may be at death's door! It depends upon the type of infection. Also, the i/v drip is faster acting and that may be a factor in the doctor's mind.

Keep smiling!

User

Posted 24 Oct 2018 at 19:02

Auld Cother, I don't even know what the antibiotics were last week. 2x tubes of something pushed through his canula . The drip was for sodium, that was at a dangerous level!

We've been back to see the lovely Doctor this morning who was happy to leave the catheter in at oh's request.

Oh's urine culture was free from infection so only the 7 days of antibiotics to take. No blood in urine during the night but blood in the bag after bowel opening in the morning, followed by some awful spasms that require oh to lie down for some time.

Rang urology nurse to say it's staying in and she said removal (if necessary ) will be arranged at urology appointment on Tuesday.

User

Posted 26 Oct 2018 at 23:16

And we're back from Wales. I am so relieved to be home. Oh is really suffering with the spasms and the blood is back....

How much is too much?

It's very very dark, I've had a Google but I can't find a scale to judge it by. I might pop into the hospice tomorrow , I am very lucky it's only 5 minutes away and ask them...

Changing the bags and cleaning oh up for bed tonight, I feel very much in at the deep end..

User

Posted 27 Oct 2018 at 23:43

So the bleeding appears to be slowing again. Urine this evening looking like wee with blood in it as opposed to just a bag of blood!

A very quiet day, lots of rest, oh is not inclined to get up and do anything for himself...mostly because the spasms and penis pain are really, really horrible.

Hospice team recommended Instillagel, I've been and purchased several from the chemists but will ask for these to be added to his prescription. One was enough to be able to get washed and changed.

The nurse said that it's hurting this much because it's such a large catheter tube to allow for clots, smaller ones would keep getting blocked.

Oh is looking rough, pain is debilitating, I hope urologyist will have a management plan.

User

Posted 28 Oct 2018 at 00:45

I am so sorry that you are having such a dreadful time - have messaged one of the members that has been in a similar situation so am hopeful she will be along with any advice she might have.

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

User

Posted 30 Oct 2018 at 23:10

Outcome of urology appointment :

Prescribed Solifenacin (Vesicare), one a day.

Oh was given 3 options, keep the catheter and try medication to stop the spasms, have a cystoscopy and they would try to cauterise bleed, could work for a couple of months, might not and may cause incontinence and the third option was to have a "scrape" of the prostate to reduce it and stop the bleeding but that also may only work for a short time and carries a high risk of incontinence as well.

I have taken a dislike to the urologist, this may just be transferred anger but he said"you have advanced cancer..." at least 4 times in the 15 minutes we were there. There's no need to remind oh, he's fully aware given the last two weeks poorliness and wasn't expecting a miracle, what we were expecting was an offer of symptom relief. I came away desperately hoping that the medication will work and that I'll never have to see that man again.

Poor oh was in tears on the way home, scared and upset as he felt that the urologist was too hurried and was rushing him to make decision there and then about something that's really important.

We did finally meet oh's specialist nurse who came into the appointment with us and there was a second nurse from the team there too. Considering oh has been under their care and this is the first time in 18 months we have met anyone from the team face to face you could say we were a little thrown by it.

I still get the feeling when we are in appointments or I am talking to people on the phone that they think we know what is happening, it's like it is assumed we are prepared or have a greater understanding of what's happening than we actally do. So when I ask a question, such as "how much blood in the bag is too much?" A sensible question I thought, some days it's been almost as thick as blood, this produced a chuckle from the urologist and "oh there can't be too much, any bleeding will be fine, dont worry" maybe it's just me but that wasn't very reassuring.

When the nurse asked who was keeping an eye on oh's sodium (this was agreed in the MDT to be the oncologist) and I replied no-one has since we went to a&e, this also did not fill me with confidence, I had thought that they might want a blood test for oh for today's meeting so I asked the gp yesterday to do one. All but the sodium results were back....sods bloody law. The nurse will keep checking as I'm a bit worried it may have fallen again.

Oh has has just summed it up "well that was a bit of a bad day"

As oh wasn't well enough to leave the house yesterday the community Nurse came to the house to take his blood.

While we were at the hospital today the district nurse rang the house to make an appointment to see oh.

I will sort that out tomorrow and ask for some catheter support too as I really only know the basics but have been left to get on with it. I'm the kind of person that needs reassurance that I'm not doing it wrong and maybe making things worse.

Fingers crossed the Solifenacin (Vesicare) works.

I wonder how long before it takes effect?

User

Posted 30 Oct 2018 at 23:30

Sorry that was a bit of a rant, pent up emotion and nowhere to let it out, came in from the hospital to "when are we having dinner?", "mum, have you seen this youtube/snapchat/instagram video, it's hilarious?" "At the weekend can I....."

Nothing like kids to keep you going but sometimes I need a bit of space to mull things over or stamp my feet. .

Thank you for being here

User

Posted 31 Oct 2018 at 02:07

Kentish, it isn't supposed to be this difficult. Could you phone the specialist nurse and talk it through again - perhaps pretend that you can't quite remember what was said or simply tell her what you have told us, that there is an assumption you know what is going on when in fact, there are so many teams involved everyone might be assuming that someone else has explained it all to you. I would also be pushing to clarify the role of the hospice team / palliative care in your OH's care planning - you need more than just us.

There is a (virtual) comfort blanket that does the rounds here - I can't remember who had it last, it might have been Julie but it is on its way through to you now.

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

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Posted 31 Oct 2018 at 07:56

Thanks Lynn,

I didn't think it should be this hard either. Oh is scared at what's happening to him, I'll ring the nurse today and try and explain that.

I think I'm lost as to how his care plan is being managed, I'll ask that too.

I appreciate the blanket, and the advice it's definitely a comfort.xx

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Posted 31 Oct 2018 at 17:29

I rang the urology nurse team to ask:

How long for the bladder spasms to improve on this medication = hopefully see a benefit in around 2 weeks.

Do I ask the district nurse when she rings to change the catheter or does that come from the urology teams letter to gp: The urology team will send an electronic letter but I should request it when making an appointment with them.

Who looks after Nigels care plan: The hospice team.

So, some answers, hopefully definitive ones.

Sodium level back, fallen again to 120. The urology nurse is going to pass this to onco on Friday to ask what his plan is.

However....because I'd asked the gp to check his sodium the results also went to them, this prompted a request to go to the surgery for a review....hurrah!

The gp (not the one we saw 2 weeks ago ) was shocked by Nigel's appearance, how pale , tired and ill he looks and asked if anyone was monitoring his sodium level. WTF! I controlled my bubbling indignation and rage and relayed the events of the last few weeks.

Gp looked for any letters or communication from onco that requested sodium to be monitored, none. So gp wouldn't monitor it as they don't get the hospital results automatically and unless requested wouldn't look at them and monitor. Bloody shambles..

Gp is concerned and debated whether to dispatch oh off to hospital but instead we agreed on blood test tomorrow to see if sodium has fallen further since Monday.

Gp wrote an email to onco asking what his plan is and what parameters the results should be within, what levels would they want to admit him and her opinion of Nigel as he is right now.

I feel the calmest I have felt in months, the community Nurse has rung and booked oh for a catheter change and to meet us and bring an "emergency kit" which is hopefully not going to be used in the near future.

I finally feel like oh is being "cared" for, it's taken a lot to get to here and quite a bit should have been someone else's responsibility but we can move on into making oh's quality of life better.

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Posted 03 Nov 2018 at 18:06

So the last post was Wednesday, Thursday nothing much happened, a bonus in my book. Me and oh had a clear out in the bedroom, making it easier to move around and have things like catheter stands on the floor.

The community Nurse came and took blood.

Friday the palliative care nurse came out and we discussed the care plan, me on my own because nigel was asleep and then we woke him up, he chatted on his own and then we chatted together. Nurse was concerned at the amount of blood in the urine and how sleepy oh was.

I rang the gp to ask if the results were back and oh's hb had gone down to 108. It was 115 on Monday. The sodium result wasn't back and GP felt that oh should go to a&e and have the sodium done again and that he should also have hb reviewed given his sleepiness.

Oh cried, and cried...and said he wasn't going to hospital and he would just go to the hospice, it was awful and really out of character. I rang the hospice and they said he could go there but if he needed a transfusion or sodium then they would take him to a&e anyway.

Oh eventually calmed down and asked me to take him to a&e, the gp wrote us and admissions letter.

They gave him a bag of saline while we waited for the results, which when they came back were acceptable, hb 111 sodium 121.

But the a&e Doctor felt he should see urology regarding the heavy bleeding so oh was admitted again.

This morning the consultant came around and was the same Dr as we saw Tuesday. He was surprised to see oh and started with "you know we cannot stop the bleeding "

I was so tired I lost my usual inability to be firm and argue and I said " we know that, we know it won't stop but we are following the gp's instructions to come in and be monitored for sodium and blood loss. His results are OK and he's feeling better from being hydrated (he's still on restricted fluids) so if your happy we'll go home now."

Oh had a moment when I got back to the hospital at 7.30am where he cried and said I'm really poorly aren't I, this isn't going to get any better is it, how long do you think I've got?

I feel that I will be moving my thread over to the dark side very shortly. This has all happened so fast, it's only 18 months since he was diagnosed but we have run out of options.

He is due a clinic review in 2 weeks for the Abiraterone, I have no idea whether the onco will continue to give it to him, I have to say that other than the sodium exhaunting and blood loss, oh is not in pain. No more bone pain in his hips and legs and hasn't taken any pain relief for 2 days. Perhaps the metastases are under control. Who knows?

I feel like my thread has turned more into a story than a request for answers, I don't think there are any.

The urologist responded well to my direct approach and whilst standing there oh's catheter bag filled rapidly with claret. There is a substantially larger amount of fluid coming out than going in. The urologist was then more gentle and said they ought to give oh a bladder flush to get rid of any old clots and then we could go home.

So we are home, I will now ask the nurse to do sodium levels on a Monday, they will be back by Wednesday and we won't be in a&e on a Friday night unecessarily.

Knowing that the hb was OK and sodium was OK means that the sleepiness is probably disease progression.

I asked the palliative care nurse whether they could tell me after onco appointment if we are looking at months or weeks, having looked at oh she agreed this was a reasonable question to ask.

Onco in a fortnight, this is s**t :(

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Posted 03 Nov 2018 at 22:27

To be honest, I thought you would be on the dark side by now. The absence of pain is a blessing in the midst of hell, I think.

How is his appetite?

What support have you (you) got apart from the palliative care & uro teams? Do you have family and / or friends around you?

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

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Posted 03 Nov 2018 at 23:32

I just wish we'd crawl there rather than crash our way over like were doing at the moment!

His appetite is poor and has been for a few weeks. Little snacks rather than meals. He hasn't lost much weight but it is going down 90kg 4 weeks ago to 88kg yesterday. His taste buds are non existent, that's happened this week. Everything points to a decline :(

I've got lots of support, my mum lives a few doors away and my brother is close by. The neighbours have all offered to help in any way they can.

I don't get much time by myself but I've found that if it involves any kind of cleaning, the kids will leave me be (in case I ask them to help!) I had 2 hours in the sunshine this afternoon hovering and cleaning the car....peaceful time to reflect on what's happening. Time to think about the kids and how to help them cope, time to think about how I'm going to cope.

I'm finding it hard to shut off at night, which is why most of my posts are ridiculously late. But this is another time that I have to myself. Nigel is asleep, kids are in bed and I've got time to read articles and think about what to do next.

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Posted 07 Nov 2018 at 19:27

So I'm going to take my husband's thread over to the dark side, not because they have ceased treatment or he is at deaths door but because his current situation is all about palliative care, meaning symptom control and quality of life.

I'm going to call it "making the most of it"

Because that is what we're trying to do, little things, every day.

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Posted 07 Nov 2018 at 22:33

The school should have access to support services for the kids - or has a responsibility to signpost you to services that they can't offer themselves. Loss / bereavement counselling for teenagers should be available before you get to that stage, either directly from pastoral staff or via a local charity or the hospice. The kids may have questions or worries that they don't feel able to burden you with. In addition, if either of them gave exams coming up the school should be applying to the exam board for special circumstances consideration.

I don't sleep so I recognise my bad habits in you. Easier said than done, I know, but you will get into a rut if you allow it to go on too long. You could try things like pillow spray or one of those relaxation apps?

I am glad that you have so much support around you but we are (almost) always here x

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

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