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Making the most of it

User
Posted 07 Nov 2018 at 19:50

My previous threads mostly consisted of questions about advanced cancer management and treatment plans and side effects.

Although at this precise moment in time my husband is still taking Abiraterone for cancer management and having 3 monthly Zoladex injections, his symptoms have progressed and he is very unwell.

We'll know whether treatment will continue at the next onco appointment on 16/11/18.

Current symptoms :

Gross haematuria  (bleeding from the prostate expelled through urine/uretra)

Tiredness (sleeping on and off all day)

Low sodium

Low hb

Loss of appetite and taste buds

Weight loss

The biggest problem is the haematuria,  it has landed oh in hospital 3 times in the last 3 weeks. He has had a catheter fitted to help but this is now blocked with clots all the time.

He was admitted again on Monday with a blocked catheter and had been placed on continuous irrigation. 3ltr bags of fluid are passed into his bladder and simultaneously flushed out through a 3 way catheter. This has eased his symptoms enormously but as soon as the irrigation stops he clots.

This treatment is not available in the hospice setting or at home. His urologist has decided that they will have to have a look and attempt to cauterise or stem the bleeding. If it works this may only last a couple of weeks before new vessels rupture but at least it will be a couple of weeks free from pain.

Over the course of 3 days he has had around 30 bags flushed through his bladder. The hope was that this would allow the vessels to stop bleeding.it hasn't happened. 

As long as the catheter is free from clots, oh isn't in any pain, just exhausted from the continuous disruption of bag changing.

I have great support around me, neighbours taking the youngest (15) to the bus stop for school, mum cooking the dinner for all of us, family and friends popping in to visit oh and allowing me time to come home to see the kids.

When someone offers to help, I think of things that I could do but don't want to because I'd rather spend my time with my husband and children.

I've just asked my son (17) to do the bins for the first time....I probably could have done it myself in the time it took to explain how to do it!

I'm hoping they take him to surgery tomorrow and let him out on Monday  (I don't want to be dealing with issues over the weekend ) Fingers crossed for a couple of weeks respite.x

 

 

User
Posted 07 Nov 2018 at 21:19

Kentish

So sorry to read about these complications.

I notice you’ve got teenagers.  I’m a secondary school headteacher.  If you haven’t done so already, you should contact the school’s exams officer as your children are entitled to special consideration in national exams such as GCSEs and A levels.  For cancer, pupils are often given a 3% uplift to their results, which could mean the difference between a B and a C, for example.

Ulsterman

User
Posted 13 Jan 2019 at 19:54
This is a looong post. Nigel is still here.

Instead of updating regularly, I started to keep a sort of diary. I stopped uploading as I was too depressed to properly acknowledge the love and support you all give, I think I’d begun to sound resentful and bitter. I don’t like to comment on new stage 4 posters as when they look at Nigel’s profile there is very little to offer hope and positivity and his membership of this special group has been fraught for some time. I have had a lot of support to help me get through the last few weeks and although I’m still sad I no longer feel in the depths of depression. What follows is the diary I have been keeping up until today.

After Boxing Day, Nigel became too fatigued to eat or get up to use the bathroom. He mostly just slept. He had a blood test on the 27th December which showed that his sodium had reached normal levels but his kidneys were failing. He was able to drink as he pleased but was too tired to make the most of it and by 30th December was taking very little fluid in. Nigel was sick twice on the 30th and the District nurses came out to him both times, the first time they gave him an anti-emetic and the second time they did observations and found his blood pressure to be something like 75/56, extremely low and an indicator of sepsis. The paramedics were called and it took nearly 2 hours to get Nigel downstairs and into the ambulance as his blood pressure kept falling every time they tried to move him, our stairs were too narrow for a stretcher so they had to get him into a chair to carry him down.

We got to A&E at around 4 on Monday morning and he was treated as if he had sepsis while they waited for blood results. He had a Ct scan and was given antibiotics and saline fluid. Nigel had a uti and this had developed into urosepsis. Monday afternoon I asked my mum and brother to bring our children to the hospital to see their dad. It was heart breaking but I’m glad I did as they had a long time to sit with him while he slept. Nigel had stage 3 aki and pancreatitis on top of the urosepsis.

I stayed at the hospital Monday night, he was given antibiotics and fluids in an attempt to reduce his temperature and rehydrate him. Tuesday he mostly slept and tried to sip fluids but struggled. Tuesday night he was very disturbed and slept very little. Wednesday his temperature and heart rate were better than previously but still not normal. Because of the holidays we hadn’t seen a consultant, Wednesday they came to say the ct showed pancreatitis and possible kidney obstruction and that it would be reviewed by the surgical and urology teams to see if there was anything that could be done to alleviate the suffering. They booked Nigel for an ultrasound of his pancreas and kidneys.

The Palliative care team came and went through what had been discussed and the possible outcomes, such as there being no further treatment and potentially being moved to the hospice.

While I went home to grab a couple of hours sleep the surgical team arrived to discuss stents and nephrostomy. Nigel hadn’t got a clue what they were talking about and my mum and sister in law did their best to take note of what has been said. It’s very frustrating that they came before the ultrasound has been done, this option may not have been given after review. Wednesday night was peaceful, I stayed at the hospital each night, they have brought me a mattress to sleep on in his room.

Thursday morning urology team came to discuss surgery, same consultant as when he had the turp. Agreed that the risks outweighed the benefits and to leave Nigel with the urinary catheter instead. Nigel was very sleepy but the most “with it” he’d been since the weekend. Medical team decided not to do the ultrasound as it wouldn’t make a difference to treatment. Palliative care nurse came back and confirmed our request to be moved to the hospice. Nigel was having iv fluid and antibiotics in hospital but there wouldn’t be iv at the hospice. All medications and antibiotics are to be given as a liquid or injectable as Nigel is having great difficulty in swallowing. He slept almost all of Thursday afternoon and evening.

Moved to the hospice Friday morning, Nigel showed an improvement overnight in hospital and started drinking again. Friday morning had a cup of tea and biscuits for breakfast then managed to brush his teeth and put his false ones in as well. This makes a big difference to how clear his speech is and his swallow reflex. Settled in well to the hospice and met his doctor and nurse, the aim is to alleviate as many symptoms as they can for Nigel, catheter leakage/bypassing, pain when opening his bowels, acid reflux pain when eating, thrush in his mouth from the antibiotics and the slight delirium that has appeared. It was clear by lunchtime that the initial buoyancy of the day (probably steroid induced) was waning and that Nigel was exhausted.

We can almost see our house from the hospice it’s that close, I feel fortunate that we have this facility so close and that there was a bed available when we needed it. I have to say the respect and compassion shown on the hospital ward was amazing too, they really cared for him and me and our family and friends.

Saturday 5th January Nigel couldn’t eat or drink and mostly just slept. He was given sedation a couple of times and his anxiety coincided with the need to open his bowels, he wanted to get off the bed to go to the toilet. I held his hand when I could and he managed a hello to both children. They were sad but like me, don’t want to see Nigel in any more pain and are glad he as sedated. Lots of family through the doors and some beautiful friends came home with me to help take the Christmas decorations down. I cleared out our bathrooms which are full of catheter and incontinence necessities and I moved the medical stuff out of our bedroom. I couldn’t bear to keep looking at it all knowing he wasn’t coming home. I can take it to the hospice and they will use it for Nigel there.

Letter in the post from onco suggesting a ct scan is necessary and that the recent issues may be due to fluid restriction. I felt a wave of anger and hatred when I opened it, too little too late. I emailed onco over 4 weeks ago to get some updates and ask for a scan. It turns out the Secretary was off sick, no one dealt with the emails and I was too busy looking after us all to keep chasing, sometimes the energy can’t be directed into following up phone calls and emails. There’s no way Nigel is going to make this month’s clinic let alone go for a scan. But 4 weeks ago it may have helped predict what was going to happen, who knows.

Sunday 6th January

Nigel was buoyant in the morning and although sometimes difficult to follow, chatted to visitors and had plenty to drink. By lunchtime this had worn off and he began to experience all over body pain, he hadn’t taken the Abiraterone since last Friday so perhaps that had an effect on the bone metastases. The nurses gave him liquid oxycodone, no oramorph as this affects the kidneys. He settled for several hours and woke up early evening to chat with me before I left for home. He started to asking to come home, although this was not his plan, and I think it will be very hard on the children to see him like that all the time, if he insists I said I would arrange for his end of life care to be moved to the home.

Monday 7th January

There are ups and downs every day, the mornings are probably the best part of the day, Nigel was chatty and relatively alert, the kids came for breakfast and told him about their day ahead or what they did the evening before., they showed him pictures of things they’d like for their 16th and 18th birthdays this year and after they’d left for school he asked me to buy them now and put them away. Nigel managed to drink lots of lemonade and diet coke and was well hydrated but still struggling to eat The doctor thought he may have a very bad case of thrush in his gullet and gave him treatment for it. Long periods of sleep interspersed with chatty good humour. A good day for the kids to see him. The nurse prepared a Compact Coffee flavour Ensure for him, a scoop of ice cream, some milk, some crushed ice and blended. A very nice frappe which he managed to drink.

Tuesday 8th January

Nigel slept well but struggled to wake up, only really becoming alert around lunch time, Doctor felt a change from Haliperidol (anti-nausea ) to metoclopromide might help with the drowsiness, so changed to this in the evening. A quiet day, I gave Nigel as shave and helped give him a wash, he talked to the Doctor about maybe getting out of bed on Wednesday and into his wheelchair. Very poor appetite but managing a chocolate milkshake and another frappe. I rang motability to inquire as to whether we can purchase the car mid-lease, we can. I have to notify the DWP that Nigel is in a hospice as if he is admitted for 28 days the PIP stops and this is what funds the car. These are the shitti est things to deal with when this situation arises. Good urine output, nurse feels that kidney function may have improved/recovered.

Wednesday 9th January

A fairly rubbish start to the day, Nigel woke up at 7 and bypassed his catheter, by the time the nurses had changed him and his bed he was exhausted and went back to sleep until 11am. Then family visited with a 1 year old and he woke right up, he then had a stream of visitors until 5pm, he was really with it and chatty. The kids came up and they decided they would come for longer on Friday. Nigel is still drinking but can’t eat, he finds food attractive but once it’s in his mouth he doesn’t like it and spits it out. I have asked the doctor if there is any tweaking to be done with the meds to improve this. They will discuss for tomorrow. A nice day for everyone. Social worker dropped by to talk to me and a different one to talk to daughter. Son has had a meeting with his but neither child.inclined to talk at the moment. Nigel is scared, I asked if a social worker could drop by to talk to him and help him share these anxieties as he wants to but stops himself because he’s upset and doesn’t want me to be upset.

Thursday 10th January

Same scenario, Nigel was awake early and with it for an hour before he went back to sleep and could not bring himself around to chat. Visitors arrived around 11.30 and he woke and chatted for a long time. Drinking ok but no appetite, Nigel started asking about coming home. He said to the visitors that he was going to build himself up and come home in the next few weeks. I didn’t know what to say, I wasn’t sure if he was trying to convince himself or if he was convinced he will recover some of his health from this episode. If I’m totally honest, I was afraid to have him home as his needs are more than I could manage on my own and that would mean relying on nurses to come to the home, they wouldn’t be there all the time and it’s sods law that you need them when they aren’t readily available. He seemed fitter than when we arrived at the hospice, he had enough strength to turn himself over in bed and to pull himself up the bed with the hoist. He hadn’t been able to do this at all until now. I went home for a shower and open the post. My mum sat with him but he slept. A relatively alert afternoon and evening, no food but drinking ok. Catheter pain, an ache that goes away with the Instillagel so probably down to it being a size 16 rather than anything else. Went to sleep talking about how tomorrow he was going to get out of bed and into the chair (very comfy recliner, I’m sleeping on it at night.) Positive thinking. He said he was going to ask the doctors what happens next, I don’t think he understands that he is still deteriorating, they’ve made him feel better but not being able to eat anything is not a good sign.

Friday 11th January

Nigel is a very determined man, he decided at 9am he was going to get in the chair and he did, with the assistance of 2 nurses. The kids brought Macdonalds breakfast at 10am and I made Nigel a sausage sandwich, he ate half a sausage and drank 2 cups of coffee. We were all a bit surprised at this. He sat in the chair for an hour and then went back to bed. He managed to try the fish and chip lunch they provided, a couple of mouthfuls. He chatted with visitors in the afternoon and then ate the middle bit of a portion of arctic roll for his tea. He had another coffee and went to sleep around 9pm. I don’t know if this is just a little hiatus or if there is an improvement in his kidney function and general well being. Nigel said he might ask them to check next week. He has been telling visitors that he should be home in a few weeks and is intent on getting into the wheelchair tomorrow for a tour of the hospice.

Saturday 12th January

A long night in which Nigel had trouble with his bowels opening without control, twice in the night, then on waking. He managed to get up and into the chair for half an hour, then he went back to bed for a while. Then his bowels opened again, after the nurse had changed him he asked to get in the wheelchair, I took him on a little tour of the hospice. We went to the kitchen and made a coffee, I can’t quite believe the improvement and neither could the doctor when she saw him being wheeled back to bed. They are going to review him on Monday as he seems to be improving rather than deteriorating. Appetite is still a major issue but drinking plenty. I am prepared for this not lasting but it feels good to have some happier memories.

User
Posted 14 Jan 2019 at 01:39

Dear, darling Kentish,

I am sending all of you the biggest hug. I think you and your husband are amazing. You give me support like you wouldn’t believe. I only hope that I will be as brave as you when...

I still can’t bring myself to log information about my bloke’s test results on here. Everyone else has questions about treatment and prognosis. Whereas I’m petrified to  find out. His PSA was >6000 last June at diagnosis. That’s the first time I’ve ’revealed’ that! I bury my head in the sand and carry on regardless. Like you and your husband, we chat and laugh a lot. Cry a bit too. We write letters to each other and spend as much time as we can together. 

We too have talked about end of life and where Laurence will be. Our lad is 14 and so we too have decided that our home isn’t right for us and that it would be so hard for our son. He doesn’t know that his Dad’s cancer is stage 4. I am trying to pull the rug out from under him as gently as I can.  Laurence has had a bed in the living room since coming home from hospital in June but a hospice will hopefully  offer better care. 

Gosh, I’ve rambled on! Sorry. Insomnia is a bugger. This is my time to be alone. To be angry, distraught and howl to the moon. Sorry if I’ve been insensitive. I have had a single shot of brandy in a coffee and it has gone straight to my emotions! 

I send remarkable you, your warrior husband and  precious children, love and peace ❣️

Vicky xx 

Broken crayons still colour ❣️

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User
Posted 07 Nov 2018 at 20:28

Simply awful for everyone concerned. I just don’t know what I could say or how it could even help. But desperately sorry and sending strength and love to each of you x

Edited by member 07 Nov 2018 at 20:29  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 07 Nov 2018 at 21:02

Kentish

That is an horrible situation to be in. As regards the anti spasm medication they can take couple of weeks to be effective, I have tried most of them and found one called Regurin to be the most effective,but give the vesicare a chance to work. I suffered with passing lots of debris and clots from the bladder but nothing like you describe your husband's situation. Bit of a catch 22 ,a bigger diameter catheter may not get blocked so quickly but it can be more painful and make the penis ache. I have a permanent SPC so size is not so much of an issue. I still pass debris, the blood clots did take a few weeks to subside. I have flushing bottles and at the first sign of a blockage I flush my catheter, fortunately they are quite rare and I am not sure they would help in your situation. 

Hope you both get some respite from the situation soon.

Thanks Chris

User
Posted 07 Nov 2018 at 21:19

Kentish

So sorry to read about these complications.

I notice you’ve got teenagers.  I’m a secondary school headteacher.  If you haven’t done so already, you should contact the school’s exams officer as your children are entitled to special consideration in national exams such as GCSEs and A levels.  For cancer, pupils are often given a 3% uplift to their results, which could mean the difference between a B and a C, for example.

Ulsterman

User
Posted 07 Nov 2018 at 21:38

Thank you Chris, being able to put it down in writing is cathartic, we all unconsciously edit ourselves when we're speaking face to face or over the phone etc. I usually do it because I start crying and have to get control of myself. Other than blurring the keys on the phone, tears aren't a problem when you're typing!

Just knowing that I can put it here is a relief. I'm not bottling up my feelings but it really doesn't help to be crying by oh's bedside all day....I save it for when I have 5 mins and can sob loudly and messily.

Best wishes

Katie

User
Posted 07 Nov 2018 at 21:45

I didn't know that Ulsterman, I shall certainly ask as the eldest has been really struggling with his a levels, dropping from an A/B average to a U!. I have spoken to school about the kind of support Son needs,  and I will request this in my next email to them. 

(He's since crept back up to a B) stern words from Dad and better understanding from school about the sensation of being "stuck" and how this is best dealt with.

Thank you

Katie

 

User
Posted 07 Nov 2018 at 21:51

Thanks Chris, the general bladder spasms have subsided and now it is only spasming when there is a clot to pass.

I'm really hoping that he gets a couple of weeks respite from this, it is a horrible symptom and not something we can manage at home :(

He's got a size 16, apparently they can go up to a 22, I think he'd agree to the penis pain in return for no retention!

User
Posted 07 Nov 2018 at 21:54
Son's still not managed to get the bins out....
User
Posted 07 Nov 2018 at 22:35
Ah, too late I see Ulsterman has already made similar comments to the ones I have made on the other thread. Great minds think alike!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Nov 2018 at 22:49

Hi Lynn, 

Yes I've always had trouble getting off to sleep.  Enormous amounts of physical activity work best for me but of late I mostly sit. Keeping oh company. The physical side of caring is tiring but not in the same way, it doesn't offer any relief from the mental gymnastics! 

I will contact their schools re exam concessions. I think the eldest is struggling with his emotions. The hospice have contacted him at my request to have a chat with him. I explained to him that it didn't have to continue but he needed to go at least once to see if it helped answer some questions he might have.

Friends and family want updates and they want it to be hopeful,

I've run out......I just want him to bemail pain free

 

User
Posted 07 Nov 2018 at 23:21

Kentish 

If he is "by passing" where the urine and debris is coming out between the catheter and the eye of the penis a bigger catheter might make that more uncomfortable. If the clots are coming from the prostate I would imagine getting the clots down the urethra with a catheter in is going to be difficult and uncomfortable. Instillagel helped me with soreness but did little for the ache of a bigger catheter. 

Thanks Chris

User
Posted 08 Nov 2018 at 00:22

Originally Posted by: Online Community Member

Friends and family want updates and they want it to be hopeful,

I've run out......I just want him to be pain free

 

My heart goes out to you. It is only when you are in this situation that you realise that you become the strength for everyone ... you expect to be able to concentrate all your energy on the person who is ill, but in fact you end up having to nurture a whole load of other people as well. Who cares for the carer, that's the challenge. 

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

User
Posted 08 Nov 2018 at 06:50

ColwickChris,  he only bypasses when the catheter has blocked. All the clots have come down the catheter rather than around it. He has Instillagel if he wants it but as long as it's not blocked he's not in any pain.

I found this article :

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4016967/#__ffn_sectitle

Regarding palliative treatment for gross haematuria,  I'm hoping that one of these treatments  will reduce his symptoms to a management level for him to come home. 

I need to ask today what happens if it's not successful, where does he go?

I don't know if he moves from the urology ward to a permanent ward, do they even exist anymore!

Lynn,

Exactly, I have a plan to have one home contact, one work contact and one general contact. These lovely people then relay any info to everybody else.

I'm just off to the hospital for morning rounds at 8am.xx.  fingers crossed for a cystoscopy and some relief today.xx

User
Posted 08 Nov 2018 at 19:49

No cystoscopy today but scheduled first on the list tomorrow, we'll see!

The irrigation has been slowed right down and although his urine is still pink, there hasn't been any massive clots passed.

Oh is more lucid and coherent than he's been for weeks. I'm going to ask what his sodium is in the morning and his hb, apparently the sodium irrigation fluid increases sodium levels, for oh this is a good thing.

Surgeon said the plan is to scrape clots, cauterise visible bleeds and perform TURP if necessary. They'll decide once they've had a look. I am hopeful but realistic that none of these might happen. Recovery is only supposed to be a day and oh shouldn't need a catheter, I am also realistic that neither of these will apply also. 

Surgeon hopes that his will give a couple of months respite from the haematuria. 

Making he most of it: we played sudoko together, solitaire and giggled over the suppositories he was given this morning to help open his bowels...from behind the curtain came "cor blimey, I don't normally put anything up there!" 

The kids visited after school, he had a spasm which entails lots of swearing and wind passing and although he is in agony he still managed to laugh and tell the kids not to repeat the words he used ;)

Xx

 

User
Posted 09 Nov 2018 at 22:31
Cystoscopy and TURP performed this morning.

Findings were a very large prostate and a large clot.

Sodium is 130: No wonder oh seems "sparky"

Hopefully removing irrigation catheter tomorrow and getting oh up out of bed. He's got up twice in the last 5 days, the spasms start as soon as he moves. Fingers crossed these stop now.

Still on restricted fluids onco appointment next Friday.

Maybe coming home tomorrow.xx

User
Posted 09 Nov 2018 at 22:45

Kentish

I will keep my fingers crossed for you. Best wishes .

Thanks Chris

User
Posted 10 Nov 2018 at 11:33
Surgeon removed a large clot from the prostate and did a bi-polar TURP to try and reduce sodium loss. Oh had a pint of blood in surgery as hb was down to 80.

Catheter has been removed and we are awaiting the first urination!

Awaiting bloods to monitor sodium and hb but possibly going home later...Oh feeling very positive that he'll have a bit of respite for a while.

Our Urology ward is fantastic, the care has been consistent across shift changes and they have always found time to have a quick chat with oh. A&E on Monday night was atrocious once he'd been admitted and I was afraid to leave him, so I didn't.

The nurses on urology have told us what's happening as we go and confirmed that had it not stopped bleeding oh would have been moved to the Oncology ward to receive ongoing treatment.

So, waiting.....

User
Posted 11 Nov 2018 at 13:57

...and we're home. 

Oh peed freely and opened bowels. Sodium down to 124 and it's noticeable in his lethargy and sleepiness. Really lost his appetite now so not eating salty things to help. 

Discharged because other than stay on restricted fluids there isn't anything else urology plan to do, Oncology are supposed to be dealing with the low sodium.

Urologist said they sent the tissue off for histology, to see if it was prostate cancer, prostate tissue or something else. He said it was obstructing the bladder and in the bladder. Let's hope for something really boring like prostate tissue. .....

Oh to have bloods done again this week to check sodium, concerted effort to entice him with the saltiest foods now to improve it back up to the 130 range. 

Oh cried when we left, he thought he was never coming out. ..I have to say I felt a bit like that this morning as I watched him sleeping with all the noise around us.

Xx

 

User
Posted 13 Nov 2018 at 22:24
Poor oh is feeling very battered.

Yesterday:

Not eaten since Saturday lunch time and dreadful burping going on.

Incontinent everytime he stands up and so very, very tired.

Today:

There were points last night when I nudged oh with my foot to check he was still alive. That's not a dramatisation, that's the reality. I asked him several times if he wanted me to take him back to hospital.

Today we spread his medications out and he is taking omeprozole and metoclopromide to combat the burping and the nausea.

He has regained some continence and has managed a tiny bit of chicken soup for tea.

He's slept a lot today but nothing like yesterday's almost comatose state.

This evening he asked for some ice cream.

He has a very sore abdomen when he urinates and is generally aching all over.

Community nurses came today to take bloods, they'll call if anything required tomorrow.

Collected the "anticipatory medicines" from the chemists, possibly the most disheartening thing I've done in a while.

User
Posted 13 Nov 2018 at 23:22
I am so sorry Kentish; for some reason I didn’t see your update on the 11th until now. Pleased that you have managed to get him home - I can understand why he might be reluctant to ever have to endure A&E again. I do hope that the community team are able to provide all the support you need now; they were my saviours when I was caring for my mum at home.

Has anyone taken that bin out for you yet?

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

User
Posted 13 Nov 2018 at 23:54
What an ordeal! Hope things now ease for OH.
Barry
User
Posted 14 Nov 2018 at 10:08

Haha Lynn, eventually it made its way outside!  The children are very good at scurrying off quietly and taking advantage of my exhaustion. They very quietly heap their stuff in the sink, and leave a trail of coats, shoes etc behind them. I've just come downstairs to be greeted by last nights pudding bowls/cups and this mornings breakfast things....they got themselves ready and out of the house though! 

The community team will be out tomorrow for our "initial assessment " I feel we are playing catch up here but never mind,  at least something is happening. 

Oh has just asked whether we have any bacon, and if I could run are bath for him. This is a massive improvement on comatose Monday, we may make Fridays appointment after all.

User
Posted 16 Nov 2018 at 23:44
Update:

Oh managed to get dressed today, first time in 2 weeks. He also managed a short walk down the road to my mum's for a bit of lunch. Last night we had a very nice bit of sirloin. I can't remember the last time we ate steak, it's been years. It was bloody lush.

He only ate half last night so he finished off the cold bit this morning, after a bowl of porridge.

But that was it for the day, he lost his appetite after that and didn't fancy anything later.

Oncology appointment :

A mixed bag, oh had questions such as, "why did it take so bloody long to do something about the urinary retention and haematuria?" and "do I have to stay on restricted fluids forever?"

Mine were "can you see whether the Abiraterone is having a positive effect underneath the current symptoms? "

"What do you think is causing the sodium loss and can it be treated or prevented?"

Onco asked oh what had been going on the last few weeks, oh's reply was "I'm not really sure, it's difficult to remember. "

Negatives: onco mentioned SIADH and Small Cell Carcinoma as likely reason for sodium loss and why oh hasn't responded well to the conventional treatments. He thinks oh has probably got a mixture. We'll know when the histology is back in a couple of weeks from the turp.

Positives: OH has a prescription for sodium supplement and a bumper pack of dexamethazone for a little jump start. Hopefully the steroids will make oh feel better and sodium means he can have a coffee whenever he wants.

Radiotherapy is also on offer if the haematuria continues.

Although oh's bloods were all over the place (oncos words), his bone profile showed an improvement. Based on this, if todays blood test shows a continued improvement (results are monday) then Abiraterone is to continue for another 4 week cycle. Oh doesn't have the dreadful bone ache in his hip and pelvis anymore, that is something to be thankful for.

I'm not surprised at the small cell, oh's cancer symptoms haven't followed a typical path for prostate cancer. In a weird way I am relieved that the onco has brought this up as it's a bizarre validation that I am not going crazy and I don't have Munchausen by proxy, I was right to think oh was poorlier than expected and knowing how relentless small cell cancers are (my dad had sc lung cancer) I can stop feeling I have failed in my duty to look after my husband. It's a vicious b****** of a disease and we never stood a chance.

Xx

User
Posted 17 Nov 2018 at 00:14

I had also wondered whether it was small cell or possibly mucinous PCa. It might cheer you a little to look up Cookiegirl and Edamo - her husband’s cancer possibly developed from adenocarcinoma to SCC so her story may be a little closer to what you are dealing with. 

Edited by member 17 Nov 2018 at 00:21  | Reason: Not specified

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

User
Posted 19 Nov 2018 at 19:50
Update:

Although his results were "poor" oh has been given another 4 weeks of Abiraterone. I didn't ask for specifics other than the sodium and hb, 123 and 93 respespectively.

The nurse said that there was enough of a responseries regarding his bone profile to continue. This is reflected in the lack of pain around the metastases in his pelvis and thigh.

He's taking 6mg of dexamethazone but it hasn't really has much effect on his appetite. He's only picking at a few things and still using metoclopromide for the nausea.

Chemist hadn't had the delivery of sodium supplement (I can't remember the name), should have it tomorrow.

He's passing 1 or 2 clots every time he urinates, specialist nurses said to expect this for the next few weeks....he's in agony each time and going for a poo is something else! Palliative care suggested taking oramorph and paracetamol at the same time and regularly and if this doesn't work then changing to zomorph slow release and using the oramorph and paracetamol as top ups when he goes to the toilet. Which in turn requires more laxative.

I'm really hoping the sodium supplement works so he can increase his fluids which will make toileting easier on his system.

Podiatrist coming on Wednesday, much laughter in our house and from the clinic at my ability to cope with pee, poo, sick and blood but not feet!

Omg I am not touching his toenails.....

The goal this week is to be able to come to the cinema on Friday to watch Fantactic Beasts 2, the goal tomorrow is to wash AND shave...

User
Posted 20 Nov 2018 at 07:49
Kentish you are a 🌟 keep up the good work he is a lucky man to have you..
User
Posted 20 Nov 2018 at 17:08
Kentish, you are a star, indeed. I can't help thinking that your husband is trapped in vicious circles. Pain killing drugs that cause constipation, anti-nausea tablets ditto, inactivity ditto. The so!ution has to be a much increased fluid intake, for which the sodium supplement seems to be the key. I certainly hope it brings relief and progress.

Good Luck

AC

User
Posted 20 Nov 2018 at 18:21
Desmopressin acetate:

Had a bit of a panic when I got home from the chemist and read the leaflet.

"Do Not Take if....you have low sodium....are suffering from SIADH "

I rang the onco and left a message with his secretary. Came back to me really quickly, that applies if you are taking it for bedwetting...

So, starting this evening, no more restricted fluids, hopefully this will help flush his bladder of clots, these are agonisingly painful to pass. It must be, he said "I wish they'd chop it off! " I don't think many men would genuinely wish that!

Bath and shave achieved...steak again for dinner, the kids can't believe it...just going to book those cinema tickets.xx

User
Posted 21 Nov 2018 at 16:25
I hope you both enjoy the steak tonight and the cinema on Friday.

Here’s hoping the increased fluid intake will improve things.

User
Posted 21 Nov 2018 at 21:41
Increase in fluid means an increase in leaking but he's not bothered about it. Peeing like a horse!

Managed to get up with the children this morning (more than I did ) and see them off to school. Then he made a coffee and brought it up to me in bed, stayed up all day. Nurse came and took blood, podiatrist came and did his feet...bleurrgh.

Actually she said other than a funky toenail and dryskin they were fine, I'm still not doing it :)

Had a wash this evening and has now retired to bed.

In amongst this we talked about funeral songs and the children's 16th and 18th birthdays next year...he wants to talk about it, decide and then never discuss it again. I agreed that was a very good idea. We're going to write it in his My Wishes book (the funeral plan, not the birthday ideas....) and then put it away. I like his approach of tackle it head on and then get on with the everyday, nothing more to discuss.

My workplace have given me unpaid leave until after Christmas, to be discussed again in January.

His workplace are still paying him full pay, his sicknote finishes at Christmas and he will send in another one. I spoke to them recently and they asked how he was and reassured me they would continue to pay him as long as they could. They are awesome. He must have been very highly thought of.

A side thought:

Does anyone else read some of the words and see:

Mucinous = Mutinous

Haemoglobin = Haemagoblin

Prostate = Prostrate

Etc

Or am I having a mini moment, using humour to deflect..!

User
Posted 23 Nov 2018 at 22:28
Positives:

Sodium is 124 still and Hb has risen to 100.

Negatives: raised white cell count, no sign of an infection at the moment though, eg temperature, cough, red skin.

Nausea and vomiting though, I called the doctors for the results this morning and they said the doctor would do a home visit to see if he had an infection. Coincidentally, oh had been sick twice today and I wanted a doctor to come and see him anyway.

Doctor couldn't pinpoint an infection but wrote a prescription for prochlorperazine to try as an anti nausea drug.

Oh is really miserable, he's slept a lot of the day and feels sick when he is awake :(

User
Posted 24 Nov 2018 at 19:34
Crisis/anticipatory medications:

Oh still being sick at 11pm and agreed calling the community nurses would be a good idea. They came within the hour and gave him an injection for the vomiting. He's managed to keep the oral medication down today but has slept for most of it. No other meds taken at all as he just felt to rubbish to try.

This is tough :(

User
Posted 24 Nov 2018 at 23:16

Hi,

I just want to send you and your husband a massive hug xxxx

Broken crayons still colour ❣️

User
Posted 24 Nov 2018 at 23:41
Nature kicks in to produce natural pain relief and sleeping more is part of that. Are you managing to get any rest?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Nov 2018 at 00:46

Thank you Ladies,  I feel if I have a real life hug I won't be able to keep it together for the children. I'm waiting for our son to get in from his part time job (restaurant ), can't go to sleep until I hear the key in the door.

I'm not really doing much but it's not restful...I can't concentrate on the TV or a book and I don't want to go out, I want to stay near oh. I've woken him up twice since lunch to get him to go for a wee and to take the metoclopromide.  At least that's staying down and he's stopped being sick.

Family have popped in and chatted to the kids and me. But even conversation is hard to concentrate on. It's a horrible feeling of knowing I must still function for the children but actually I just want everyone to leave us alone.

Xx

User
Posted 25 Nov 2018 at 02:38

Read this poem (half way down the page, dated 29th November) from Julie -
https://community.prostatecanceruk.org/posts/t9751-Advanced-prostat-cancer-part-2/page2

 

Julie had the comfort blanket for a long time but was always generous in sharing it with others.

Anything normal is going to be a huge effort at the minute; it is a great shame that the moderators block any swear words on this forum because sometimes, a good expletive helps. I used to go out for a run and scream once I got round the corner.

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

User
Posted 25 Nov 2018 at 11:19

Thank you Lynn, I love the humour and pathos. I've often said to my counsellor that I want to press pause on life, just for a little while so we can take a deep breath and rest for a moment from the journey.

I am a very sweary person, it takes a lot of restraint not to fill my posts with ******. According to the  kids, "Mummy has a potty mouth" I would very much like something to punch, or smash or burn....perhaps I'll chop logs and light the fire, that's acceptable arson and violent behaviour ;)

This current little detour appears to have come to and end!  After many, many trips for a number 2 since yesterday, oh announces his morning that he thinks he might get up in a while and watch TV...he has not had any of his medications since Thursday evening, Abiraterone,  prednisolone, desmopressin,  morphine, omeprozole. He took one paracetamol yesterday because he had a headache and has managed to keep down 4 doses of metoclopromide.

He has also drunk 6 small cartons of apple juice over the course of yesterday and last night.

I'm wondering if this was a bad reaction to the desmopressin, coupled with a really bad bout of constipation?

Oh has decided not to take any of his meds until Tuesday and then he's going to go back to restricted fluids for a few days before trying the desmopressin again.

His only pain is in his penis when he goes for a poo, no idea why but it goes away once his lower bowel has emptied. He's not planning on taking the morphine unless it's absolutely  necessary, he hates being constipated.

Right then, off to do something productive,  probably, when I've had another coffee. Xx

User
Posted 26 Nov 2018 at 00:15
Well he didn't quite manage to get up but today was a better day. Still keeping the metoclopromide down and was tempted by the smell of frying bacon into eating a crispy rasher. Then a kids cheese pizza and later in the evening a sausage.

I'm under no illusion this is a little hiatus, he's just slept for almost the whole day and when awake he can't manage a conversation longer than 5 minutes.

But he managed to ask our son about an apprenticeship he's been offered and a new part time job he starts this week.

Xx

User
Posted 26 Nov 2018 at 23:42
And today he's up :) twice !

When he got up this morning he said he thought he'd got another uti, off I went to gp with a sample and they called later to say yes he has and to collect a prescription for trimethropin.

Still off his meds and only had 2 metoclopromide today.

Interest in food today, cooking kids tea and it's like the bistro kid from upstairs...."that smells nice!"

I'm so glad he's stopped feeling sick.

Tomorrow's plan: get washed.

A home hairdresser is coming to give him a trim on Friday, and we are having a new mattress delivered. You know you're old when this makes your heart flutter😁. It's the posh one that Premier Inn use, we stayed in one earlier in the year and it was like being hugged!

Oh is looking forward to it too, 3 solid days in bed and he's got a sore hip from laying on his side all the time.

Ugh, ,I went to bed early (8pm) because I'm shattered, slept until 11pm and now I can't get back to sleep :(

User
Posted 26 Nov 2018 at 23:51
You can buy the mattresses that premier inn use????
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Nov 2018 at 00:13

I know Lynn, I googled it just for jokes after we'd stayed there...then in our typical way we ummed and aaahed over whether to splash out. Then a few weeks ago on a particularly s**t day I ordered one.

Our motto for frivolous purchases is:

"Chuck it in the f**k it bucket"

We are cautious spenders by nature so its a little nerve wracking when I press the "complete" button on large amounts of money. I usually have to eat some chocolate or drink wine to settle my nerves😄

User
Posted 27 Nov 2018 at 00:57
You see, this is the problem - I am tee total so I just spend the money without any kind of props needed.

Having said that, my family are very proud of me for giving up smoking last February so I haven't the heart to tell them that I started again :-/

Seriously, next time he has a bad phase, make sure that the nurses come out to visit - the last thing he needs is bed sores. When I kidnapped mum from the hospice, Social Services had to bring a proper medical bed to the house with all the lifting & tilting facilities so that she didn't get sore - it is a statutory responsibility in terminal care cases, I think?

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

User
Posted 27 Nov 2018 at 09:55

I will do that.

Already managed a bath this morning :) just now is eating a slice of jam on toast. Hasn't taken metoclopromide since yesterday lunch time but has taken an omeprozole this morning as the burping/indigestion is horrible.

I've been thinking about the bed, oh has said he wants to go to the hospice for end of life care but he may well be bed bound before that happens. I think we could fit a bed in our living room otherwise it'll just be an additional pressure pad put on our own bed.

At what point is it decided that the hospice is the place to be and who decides?

I gave up smoking 11 years ago when I lost my dad to lung cancer and his specialist told me that I would very likely develop it myself if I carried on. My brother on the other hand has stopped and started over and over again. I still get a whiff now and again and think I really want that "aaah" moment that came with lighting up! 

I don't drink heavily but I wish I could leave the chocolate alone😈

User
Posted 27 Nov 2018 at 11:05

Originally Posted by: Online Community Member
You can buy the mattresses that premier inn use????

By Appointment to Her Majesty no less.  The bed outlets in Redbrick in Batley used to sell them at eye watering prices - £5,000+ - but they were very nice to lay on.  The one we slept on at Premier Inn a month ago must have been well road tested as it was a bit lumpy.......fortunately no stains though..... 

User
Posted 27 Nov 2018 at 13:18

£565 for a king-size Hypnos mattress only. Mine with the new map of Tasmania on it might need replacing, but I could always turn it round to Her Loveliness’s side and blame her.

Or turn it upside down and pretend nothing ever happened!

Cheers, John

Edited by member 27 Nov 2018 at 14:12  | Reason: Not specified

User
Posted 27 Nov 2018 at 15:28

Haha you two, "map of Tasmania", I've arranged for the old one to be taken away when they bring the new (extra cost), I'm too embarrassed by the state of it to leave it outside for the council to take away....the shame and all the neighbours will see!!

I have also purchased a waterproof mattress protector to keep it nice...I can't believe how excited I am about it 😄

 

User
Posted 05 Dec 2018 at 17:19

Update: Urology appointment today for follow up from TURP. Results say he has 5+5 acinar adenocarcinoma, I asked if they had found small cell, the urologist looked at the report and said there was no mention of it.(he didn't do the op)
So, yay, it's very aggressive but it's not small cell.

Oh is enthused by this news, he's felt so sh*t he thought he was literally dying.
Urologist said the pain on urinating and emptying his bowels should improve with time as the surgeon spent 60 mins burning tissue and this is a lot.

A little bit of me feels that this isn't right but can prostate cancer be this aggressive without being small cell?

Urologist didn't have anything else to say other than the cancer had grown into the bladder and the report said the kidneys were difficult to see.

Edit: 

OH has eaten more these past 3 days and we made it out to homebase to buy a Christmas tree.  Each day is just a little better than the last. Tomorrow we are wrapping presents. I am able to enjoy the little things we do together but I am struggling with the impending sense of doom I've been feeling since summer.  I am relieved that they didn't find small cell but I am still worried, I hope that makes sense.

 

Edited by member 05 Dec 2018 at 18:05  | Reason: Added comment

User
Posted 05 Dec 2018 at 19:27

I can't help with your technical questions, so sorry about that.  The rest of your post is positive though and it seems that OH is improving each day, albeit slowly but in the right direction.  That's going to help for the upcoming holiday, I'm sure.

I'd love to see his face when he unwraps the mattress protector on Xmas Day......

Stay strong! 

User
Posted 05 Dec 2018 at 21:41

Mr Angry,

I've bashed out an email to the oncologist with a list of questions that I don't feel could be answered by the urologist, so hopefully some technical answers from there.

Yes, each day is a little better, I didn't like to tempt fate by rejoicing the fact we'd been to homebase and then be dealt another dose of something nasty.  

The mattress is Awesome,  it does nothing to encourage me out of bed in the morning. The mattress protector is already on, it's nothing like the crinkly plastic of my childhood😂. 

We would normally spend Christmas with family (25 of us) in Sussex but oh doesn't want to travel, he's still passing clots and the urologist doesn't think this will change. If he goes into retention again he wants to be at home. So we are spending Christmas at home, I'm so lucky to have such a kind family, they've offered to come to us with food at a moments notice if oh feels well enough. Or they will just visit, whatever oh wants to do.

Thanks for the support 😊

User
Posted 05 Dec 2018 at 22:22
Even within adenocarcinoma, there are tigers and pussycats. Much of the research spend currently is on a) trying to work out why some are tigers while others are pussycats and b) trying to find a way to identify which is which.

Christmas and the mattress both sound lovely. An advert flashed up on my FB account today or the John Lewis top-of-the-range mattress which is priced at a smooth £18,000 !

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

 
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