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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 05 Jul 2019 at 21:14
I just wanted to come back one more time to say thank you. Thank you for the support you all gave me, the advice and the virtual hugs. Thank you for the condolences you all offered. I read every one but just couldn't manage to write anything back. I have logged on a few times but have been unable to focus my mind enough to write anything.

My heart goes out to those struggling and also the families of others who are at peace now.

It has been and continues to be a struggle to cope with the lingering anxiety, any siren raises my heart rate and the fear sets in. I am taking steps to work on this and the awful merry-go-round of "what if's" that keep me awake at night. The children were not exposed to the trauma in the same way and although there are moments of deep sadness, they appear to be "just getting on with it", and I am relieved.

The Boy sketched his way through the exams, just about making it to the last one and fully expecting to have failed. He probably hasn't but it doesn't matter, his apprenticeship is not grade dependant (thank goodness). He has just returned from a week away in Majorca with his young lady and has had a wonderful time.

The Daughter organised a fundraiser through school for the Hospice and they raised nearly £5000, she's taken her end of year exams and passed everything with an acceptable grade, pretty impressive considering how much time she had off over the last 6 months.

Like I say, "just getting on with it".

I am just getting on with trying to put myself back together physically and mentally, emotionally will just run its own course.

Again, I am very grateful for the people on here who consistently offer their support, even if its only an acknowledgment that you are not alone. I sincerely wish you all the very best for the future, love and hugs to you all.xx

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 24 Jan 2019 at 19:57
Thank you everyone for your words of support.

WE ARE HOME!!!!!!!

Just a couple of hiccups along the way, transport not arriving and having to find a wheelchair cab at school pick up time, needing to pick up sleeping tablets (zopiclone) from chemists as there wasn't any for N to take home from hospice but apart from that it went OK.

We have just done our first bedtime routine of catheter flush/night bag/remake bed/bring my camp bed downstairs etc.

I have set alarms for the drugs, set a reminder for the fentanyl patch and I am bloomin exhausted.

It's only 7.50pm, too early to go to bed really so I am pottering about trying to regain some order in the rest of the house.

My lovely mum cooked the dinner and has offered to cook every night. I am soooooo lucky. Otherwise it's going to be toast, toast and a bit more toast I think.

The carer arrived about 10 mins after we got home, she would also have been the bedtime one but we are allowed to say no thank you to any of the bookings so N said he didn't want help tonight, he just wanted to settle down.

They will be back in the morning to wash him and get him ready for the day, then roughly 3.5 to 4 hours after that if we want them. It's much more flexible than I thought it would be.

I am hoping we are not first in the morning😄 so I can have a lay in. The kids are going into school late and we are going to have breakfast together. McDonald's I believe 🍔

User
Posted 25 Jan 2019 at 17:55
A pretty good day, not Maccie d's but a local independent coffee shop breakfast instead, yay the kids have grown out of the Golden Arches allure 😄

N had a toasted cheese sandwich with the crusts cut off, this is important because he wears dentures and crusts are his enemy (even with polygrip).

The carers have been 3 times so far today, first visit this morning at 9am coincided with the breakfast so we agreed N would have a wash at lunch time, when they arrived at lunch he was fast asleep so we left him. They came back at 5pm and washed him then. It's all pretty relaxed and totally about what N wants or doesn't want to do.

I've managed to do some reorganisation and feel a little more feng shui, though being home with the kids is not relaxing at all....

We have a caravan by the sea, my profile pick is a pretty good representation of the sunset there. The site reopens on March 1st, N's goal is to be able to get in the car so we can go there, either before it opens and just be at the sea or when it opens and sit on the decking.

He's still got goals and I am hopeful we might achieve them.

Tonight's goal, watch an episode of something we've been recording without falling asleep. 😊

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 ❣️

User
Posted 17 Jan 2019 at 22:01

Oh Devon maid,  I very quickly put away my feelings about pee and poo when I saw how helpless nigel felt. I think your right, for most people you just go into autopilot and get on with it.

I have found tesco ultra free spirit incontinence pull ups to be the most effective at containing things. £8 per pack of 12 I think. We have a pack of dog poo bags in both toilets and a pack of water wipes as well, these are unscented baby wipes, just water and citric acid I think.  The pull ups tear down the side so there is no need to pull them down and create more mess. After the first few changes, we established a method that was as quick as possible. 

I'm still not cutting his toenails though !!!

I am amazed at his progress, as is everyone around us. If we can just keep things steady we may get a couple more months yet.

Thinking of you too and everyone in this life, may we all find moments of peace.xx

User
Posted 20 Jan 2019 at 11:51

Originally Posted by: Online Community Member
I should refrain from mentioning that the consumption of ice cream, or perhaps chocolate assists me, but not my waistline.

 

I find chain smoking helps without affecting my weight but it tends not to be a very acceptable solution these days.  

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

User
Posted 13 Feb 2019 at 19:52
Sending wishes x

If life gives you lemons , then make lemonade

User
Posted 16 Feb 2019 at 15:09

Thanks for the support Chris. I started off in the "younger men" section and have migrated over the course of 2 years to here. N is by no means the youngest on here and the age gap between us (16 years) makes the family dynamic a bit different in that he has a 15 and 17 year old and he's 56. He's on a urology surgical ward at the moment and the turn over of prostecomy patients is high, and the average age of the last 2 weeks has been late 50's to 60's, however most of their children have been in their late 20's to 30's with heir own children. It's been quite hard emotionally to watch knowing we aren't going to have that. These things don't really cross your mind but when they do it makes us so sad.

On a more cheerful note (sorry that was a bit depressing )

Bed available at the hospice and held (unless there is an emergency admittance)for Monday afternoon. Urology agreed N should have his catheter changed while he is an inpatient in case there are any issues, this will probably be tomorrow. Consultant this morning also agreed that keeping him so he can go to the clinic was in N's best interests as it will be less stress on N than being transported back and forth.

N's bowels seem to be back in operation, yay and he is more comfortable. I have popped home to put some washing on (I can barely contain my excitement. ..)and then I am going back with his wheelchair so he can have a practice at sitting up in it.

Both kids have sent pictures of beautiful mountains (one's in Austria,  the other's in France) and are already having a great time. The house is as tidy as I left it 😂😂😂😂. No one to blame but me for any mess this week.xx

User
Posted 25 Feb 2019 at 21:56
Nephrostomies removed without issue, yay. Eating and drinking well ( albeit only 1.5 ltr) and stopped pooping for England.

No beds at the hospice today, maybe tomorrow or Wednesday. Otherwise he wants to come home and go into the hospice from home for a while. He doesn't want to stay in hospital any more which is a positive frame of mind to be in.

Very frail, kids came in and were a bit shocked but regaled us with tales of crashes and awesomeness on the slopes, very entertaining and more stories to come tomorrow when they visit again.xx

User
Posted 26 Feb 2019 at 20:06

Got out of bed, whoop whoop. Sat in the chair while I remade his bed. Eaten 3 meals and generally had a good day. No beds so just waiting. Left him planning what he is going to try tomorrow,  sitting in the wheelchair and having a look at the rest of the ward if he can.

Taken down for a ct scan first thing this morning, onco had requested it in January when we saw him and they rang us on Friday to arrange N coming in for it😂😂😂 I said he's upstairs and been here for 3 weeks!  Oh my days, our world of modern technology is sometimes not very efficient.....anyhow, another thing ticked off for onco to get a baseline if N ever makes it onto Enzo.

Absolutely shattered now, and trying to squash down the horrible thoughts of wondering how long this little high will last. Given N's track record I can't help but be scared. I've just got to not let it be the loudest voice.

User
Posted 18 Mar 2019 at 20:35
Teacups, my heart goes out to you. It really is a thin veneer isn’t it, and it doesn’t take much for the brittle edges to crumble. I hope H is still comfortable, it sounds like you are in peaceful surroundings. Sending you hugs. The sun has been streaming in through N’s window, I’d love for him to want to come outside with me for a bit to feel it on our faces, I wish it wasn’t so cold, he turned down the offer to swaddle him in blankets and wheel the bed out through the patio doors!

N has improved a little, no more chronic nausea and the tiredness has abated enough for him not to fall asleep mid sentence. Another blood test today to see if that is an improvement in the sodium or just him adjusting to the new low level, results tomorrow. A quiet day yesterday with the kids visiting and enjoying a game of cards together and today N and I have watched a 30 min programme on his kindle, the first time we’ve watched tv since January. These really are “making the most of it” moments, the kids are ok, as well as can be expected, finding it hard to focus but managing the necessities. I try to keep a consistency with expectations but everything is negotiable, Son came in his lunch hour today but daughter may not see N until Wednesday so I’m thinking maybe an early morning coffee with him tomorrow for 5 minutes and then a longer stay on Wednesday, or going to collect her from school early if he’s having a good day and squeezing in a visit then. After Friday’s horrible deterioration I think they need to see him as often as possible but this is really hard to balance with school.

“Discombobulated” love it, I think that is an apt description. I’m going with your “badly expressed concern” and trying to convince myself of this every time someone asks if I’m ok, which is often. Perhaps my resting face has taken on a permanently miserable/worried look, it’s exhausting keeping up N’s spirits, and the children’s and the visitors….

I do feel like I have lost the connection I had and I didn’t previously give a second thought really to how I was perceived by others at the hospice but your right, I am questioning everything that I took for granted before, staying late, going early, sleeping over, making food, coffees, washing, shaving, cleaning. I spoke to my mum and sister in law today about it and they both thought it was probably concern but agreed that it was a funny way to express it, they also suggested that maybe it was the staff who felt that I was somehow saying that they weren’t doing it right. I suppose that’s a possibility but not likely. Anyway, as long as N is happy there and he is, then it doesn’t really matter, I’ll just get on with it and think more carefully before I do stuff.

Wishing everyone a quiet night.xx

User
Posted 06 Apr 2019 at 17:25
Thanks lovely people, to be understood from a personal perspective makes a difference. Professionals can come across as "removed", they seem very pleased that their slice of N's care is in place but don't relate it to the reality of looking after someone at home pretty much most of the time by yourself. Which as you say Teacups, is mentally and emotionally relentless.

The hospice are at the end of the phone and under them come the palliative care team. The Community /District nurses are due to come on Tuesday, I could have requested they administered the fragmin twice daily but N said could I do it as then we wouldn't be waiting for people all the time. I'm a little nervous that I'm doing it right but the nurse will check on Tuesday. I would have quite liked a nurse to look at him twice a day for the security but I can see how N is fed up with being monitored.

Our gp has not once been proactive in N's treatment since his diagnosis. They are very accommodating and always listen to me but I think it will be me making contact rather than the other way round. Having been with the village surgery for over 20 years it might have been nice to have had a courtesy phone call to check in that we were ok but they prob ably don't even know we are home. The discharge letter from the hospice will probably arrive next month!!!! I hate getting letters a month after the clinics, it's so tasteless when each have arrived to say what is going to happen with treatment and N has already been readmitted to hospital. Quite distressing to read them during the next "crisis".

We've had a room reshuffle today so N can see out of the window, there a lot of foot traffic past our house, mostly neighbours and he's enjoyed giving a little wave (we're pavement level) as they go by. He seems about the same and that is ok. First day of easter break and the kids are chilling in front of the TV with him. He occasionally nods off while it's on but they don't seem bothered, they just press pause and go back to their phones!!

I don't ask for much I think but a few more days like this would be very nice indeed.

Teacups, sending hugs across the water, that hole will have a sandy shore and you'll be able to walk out of the depths, we'll all be here for you when you need us to be. Xxxx

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 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 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 09 Nov 2018 at 22:45

Kentish

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

Thanks Chris

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 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 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 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 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.

Ido4

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 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 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 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 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

User
Posted 06 Dec 2018 at 16:32
Your OH can ask your GP for a referral for genetic counselling. They will take a full medical history for him and any known history for relatives, and they will also ask about the areas where he and his family lived and worked, what the wage earners did for a living, etc. They will probably also spell out in detail the pros and cons of going ahead with the test and then send him away to think about it.

We have a brain tumour in the family so I was referred for genetic counselling. By the time we had done two appointments, they had completely convinced me that genetic testing was a bad idea. Apart from anything else, there might have been unintended consequences for my children, such as not being able to get a mortgage when they grew up, not being able to get affordable life insurance, and the emotional impact for them if we found out that I had it. Direct impact for me included possibly not being able to move house in the future unless I could buy without a mortgage. They also explained that it was much more likely to be environmental - my wider family almost all lived in the same few streets, drank the same water, cooked similar food in similar ways (most significant, the use of the same chip pan for many years and not necessarily changing the chip fat very often), breathed the same air from the same pits and shipyards.

It is similar for prostate cancer. Only a small percentage are thought to be truly hereditary (5%), most commonly BRCA 2 at less than 1% of all prostate cancers. If a family carries BRCA then it would usually be seen as breast cancers in 30 year olds, metastatic prostate cancer under the age of 50, ovarian cancer, male breast cancer, pancreatic cancer and cases of childhood leukemia. There are other gene faults such as HOX which are more common than BRCA but have no relationship with breast or other cancers apart from prostate.

Vast majority of prostate cancers are thought to be environmental - drinking water with added chemicals, consuming foods that have had hormones added, plastics in our diet (cling film, drinking out of old plastic bottles that have been left in sunlight, that kind of thing), consuming a lot of processed food. And that makes sense in my head, at least; traditionally, a mother would cook for her sons the same food that she cooked for her husband, in the same pans and possibly that would be the same food that her mother-in-law had cooked before her. When I asked our uro about the risk to our son, he said the best thing we could do was change his diet - get him into a prostate friendly way of living while he is still young. He also said that if society could change the way small children eat now, prostate cancer could almost be eradicated in one generation.

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

User
Posted 11 Dec 2018 at 00:11
I missed your previous post somehow, sorry. I get the ‘don’t scare the kids’ thing but I had pre-cancerous cervical cells at 18 and had to have some of my cervix removed so was obviously really anxious for my girls and banged on and on about them being checked as soon as they were old enough. My mum’s cervical cancer was spotted as a result of my diagnosis. Even with the family history, they could not get cervical smears until they were 24 - it was ridiculous. Two were clear, one has close monitoring now. I had part of a breast removed in my 30s but there is no breast cancer in the family, just the brain tumour which pops up all over the genogram.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Dec 2018 at 07:37
I couldn't agree more.

The HPV immunisation programme should make a massive difference to that generation, and young society generally has a good grasp on implications of smoking, substance misuse, etc. What I think we need is more rapid progress on healthy eating as a cancer prevention tool ... Jamie Oliver and his like have begun a sea change in school dinners & health curriculum but a general principle of less processed foods and more fresh ingredients, benefits of mediterranean diet, etc can be done without being scary.

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

User
Posted 17 Dec 2018 at 09:10
Hope you get a decent Xmas Kentish you are a star..
User
Posted 20 Dec 2018 at 01:54

Hi,

just want to send you a hug. I think you’re bloody marvellous : ) xx  

Broken crayons still colour ❣️

User
Posted 23 Dec 2018 at 23:23

Sorry Kentish, we went off to Gambia for some much needed sun. I am so sorry that I didn't respond to your posts and also that none of the other regulars responded to give you any kind of hugs like Vick did. It may be it's just because no-one has really had quite the challenges & problems that you are facing but that shouldn't stop us all from giving you a bit of emotional support - Franci is right that you are a star.

Now though, I don't really know what to say to you - not sure I could ever be okay with someone who makes Marmite flavoured stuff for pleasure :-/ 

Edited by member 23 Dec 2018 at 23:25  | Reason: Not specified

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

User
Posted 25 Dec 2018 at 08:48

Hi Kentish 

I don't have much to say these days as my journey just continues and I can't be of much help to anyone really. I have followed your journey and may I say that you come across as a remarkable person who is giving her all to help her oh through a terrible experience. You tell things as they are and explain what, how and why various treatments are being used which has to be invaluable to others who may be reading without comment. This site is such a helpful resource thanks to people like you who share information truthfully as some experiences offer hope while others help to prepare for what ordeals may lie ahead. The other thing that the site offers is the chance to unburden your feelings which for the partners has to be positive, particularly for those in your situation. I am sure that you have and continue to help others every time you post and equally I hope that you feel the support for you and your OH. 

I wish you and your family a peaceful Christmas and New Year.

Love to you all

Kevan 

User
Posted 26 Dec 2018 at 08:41
Even though your OH disease progression is relentless the support you are giving him is inspiring and gives hope to all of us Kentish.

User
Posted 13 Jan 2019 at 20:06
Sunday 13th January

A pretty good start to the day, up into the chair and then into the wheelchair to go to the kitchen/lounge. Kids visited and chatted about stuff and Nigel talked about the possibility of getting a wheelchair cab tomorrow to go home for an hour. The nurses felt that there shouldn't be a problem with this but that we should check with the doctor first. I can't quite believe the recovery of his mental acuity and his resilience and optimism. Twice in the last 2 weeks we have had family and the kids by his bedside to say goodbye. Long may this plateau last.!!!

User
Posted 13 Jan 2019 at 23:14
Such a hard read and brings back similar memories. I don’t think you should apologise for posting how it is, or feel responsible for the impact it has on others. We do no service to anyone by pretending that stage 4 cancer is easy or tidy when it is sad and messy and traumatic and heart breaking for everyone involved. You are doing a fantastic job of holding it together and your family sounds amazing.

You and Devonmaid can have half the comfort blanket each.

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

User
Posted 13 Jan 2019 at 23:15

Hi Kentish

just wanted to send you a hug and i hope you are managing to get some rest. I am praying things continue to go well xxx

Debbie xxx
User
Posted 13 Jan 2019 at 23:27

Hi Kentish, as Lyn says not an easy read but it is a very clear, loving, detailed diary.

I have been with friends in hospice care and relate so much to how you describe what is happening. 

Sending you, Nigel and the children hugs and much love.

Ian

Ido4

User
Posted 13 Jan 2019 at 23:59
Thank you folks, I'd hit a rough patch where I couldn't compartmentalise very well, a numbness took over and I could only manage the bare minimum as wife/nurse/mother. I have a wonderful support network but you've got to let them do it! I'm getting better at asking for help, accepting offers and relying on others to do "stuff". This is really hard to do when I have been let down by those who should be managing Nigel.

1) letter in the post, prescription penalty notice for claiming a prescription without a valid exemption certificate. Turns out, neither the chemist nor the gp actually filled out the forms in 2017...they both assured me it would be dealt with at his diagnosis and as we've only used our local chemist who knows us well, I've never been asked for the certificate number. I have left this with the gp to sort out....absolutely not clearing up that f*****g mess.

2)Friday, phone call from the Oncology clinic to do Nigels telephone assessment for the next round of Abiraterone. We saw Nigel's specialist nurse on the Thursday before he was transferred to the hospice, she cried, upset that Nigel has been dealt such a shitty hand of pca. I did feel brave enough to say that i didnt think they had dealt with the aggressive nature very well in that they didnt act until it was another crisis. She said she would cancel his next appointment and his review which is due in a couple of weeks as it was obvious he wouldn't be attending. She clearly didn't manage to remember to do it and I'm sorry to say that the nurse on the end of the phone bore my anger and despair at the incompetence of the specialist nurse.

Just 2 more things that make a crap situation harder.

User
Posted 14 Jan 2019 at 04:02
Dear Kentish,

I also don't post much, but I did want to send hugs from across the world. We are not at your stage (yet), but we are in the realm of no more treatment, PSA rising, pelvic fractures and pain and reduced mobility. I am one of those people who is better having an awareness of things in advance so I do get comfort from reading the stories of how others cope with all of this.

I do so admire your spirit, and I understand a little of how frustrating it is trying to navigate these systems, find out information and get action to make our husbands as comfortable as possible. And all the while try to keep putting one foot in front of the other. I'm a quilter, so by the magic of the internet the comfort blanket has been halved, some extra added, and is hopefully now residing with you and Devonmaid.

Love to you, your husband, and your children.

User
Posted 14 Jan 2019 at 11:07

Thank you Kita, 

I had a chat with the hospice social worker this week and something she said stuck in my mind about how I am coping with the situation :

"You are doing at the moment and there will be time for being later."

She is quite right, there are times I cry so hard I can't breathe but most of the time I just work my way through the day as best I can in the knowledge that one day it will be different and I will have to fully embrace the pain in order to move forward with it.

Vicky, having youngish children makes it different, as a parent, you want to protect them from the nasty side of life. I've tried to remember how sad I felt at 29 to lose my dad so suddenly and to work out what would have made it easier to cope with. For me and the children that is being informed, there is a brilliant booklet from Macmillan about talking to teenagers and children and it also deals with when a parent is terminal. I've read it over and over and feel I am prepared to have the conversations when they arise.

When Nigel was admitted to hospital at the beginning of December for the low sodium, I sat the children down and began with. "There is never a good time to have this conversation so we are just going to have it now." I then told them that any infection dad had could be the one that he wouldn't be able to get over or that the hospital wouldn't be able to control one of the many things that were  failing and that it would be this that would cause dad to die. We sat and hugged/cried for a while and then my daughter turned the TV on, my son resumed browsing instagram and I went and washed up.

I don't ask them to "be brave/strong" or anything like that, nothing is forced, if they are sad they can be sad. Letting them have their space to process is important but then we carry on with normal stuff..."tidy your room, wash the dishes, bring the cups down!"

I can only hope I am getting it right and only time will tell. Everyone is different, it's good to ask for support even if that's out of your comfort zone as it may help you find a path through this.

Devon maid,  

I read your posts and really felt for you, the hospice have been great in making Nigel comfortable and in answering questions about how this horrible disease progresses at end of life.

Keeping on top of imagination is a struggle, the smallest thing can be blown totally out of proportion. I have reached the acceptance stage of grief, but little dribbles of denial and hope still creep in, I think that's inevitable. Nigel thought he might come home for an hour in a wheelchair cab today but after having a wash he is fast asleep again and unlikely to manage it. One the one hand this feels like improvement but on the other I can see it takes enormous effort for him to do anything and this is not improvement. 

Stau and Peggles,  thank you for the support. Your kind words are much appreciated.xx

User
Posted 14 Jan 2019 at 20:52

Yes Chris, having youngish children certainly puts  a different perspective on life and cancer, it feels so wrong that they are losing their dad already and that they'll not have him there for all those "important" milestones. It has certainly lent a frantic feeling to approaching each treatment, really desperately hoping that this one will last. I hope we've disguised the desperation from the children and instead given off an air of "living life" regardless of pca. I admire your attitude and determination and I understand your reluctance to embark on what can sometimes seem a futile journey. I have everything crossed for you that each and every treatment will knock your pca back as it should. Big hugs and love to your family. Xx

User
Posted 14 Jan 2019 at 23:36
Monday 14th January

A good day but not a great day. Nigel managed to eat a few biscuits and a little bit of scrambled egg, he also managed a small chocolate ensure milkshake. But he slept most of the day, he looks so tired.

The hospice doctor agreed he needs to be reviewed and is contacting onco to see what their opinion is on continuing Abi. This is mostly due to what seems to be a recovery from sepsis, pancreatitis and stage 3 kidney failure. Nigel is obviously very weak but perhaps there is more time than we think. We will have a family meeting sometime this week to discuss what happens going forward.

Nigel had to have a full body wash this morning because his bowels opened with very little notice and it is very liquidy in order to reduce his pain on passing the stool, I do this with a nurse/orderly and it took us around 35 mins to get him clean and settled. He was so worn out afterwards he couldn't even manage to get in the chair. He's hoping that tomorrow won't be so messy and we'll be able to have coffee in the kitchen together. I've never taken such an interest in bodily functions, And I can't believe how often I discuss them 😁

User
Posted 16 Jan 2019 at 13:33

Ha Lynn! Those pesky bins, my mum has been getting the Boy to empty them and then carry them down to her house (just along the road) and then she puts them out with hers in the morning!

Whatever works eh?

I was just going to post a midday update as we've had a family meeting. Bloods have been taken and the consensus is that if he is medically stable, i. e sodium etc are not in the danger zones, then we are planning his return home! I can barely contain my excitement....I know he's still really poorly but it's like we've had a reprieve and that perhaps now it may be a more steady slope than the Base jumping we've been doing.

Occupational therapists have been making  lists for me of measurements required and are going to try and get his legs moving again.

We talked about if he is not stable and agreed that the hospice is a good place to stay and we will just carry on as we are. I have popped home for an hour to do the washing and read the post etc.

Our hospice is 75% NHS and 25%charitable donations. According to their website they need to raise 600000 a year to sustain it. The staff are all for family pitching in to help with washing and personal care, and I can go and make a cup of tea/cofree etc when I like and bring it around to him. There is also a microwave and toaster and fridge, which makes it easy to take our own food in and reheat.

But today he has eaten my porridge, 2 biscuits and their sausage and mash followed  by ginger cake and custard. Plus 3 cups of coffee.  His appetite, taste buds and sense of smell appear to be returning, a bit of me hopes that if they restart the Abiraterone it doesn't mean they disappear again. 

He's having a nap now and the kids are coming up for dinner, I think we're back to "making the most of it"

User
Posted 16 Jan 2019 at 15:16

Kentish, I’ve been reading through your story (as until recently I’d taken a much needed break from the forum), you have been through such a traumatic time with this illness and have handled it with such an amazing calmness and sense of love and patience.  Having young children must make the whole experience even more difficult, mine are in their early thirties and they are incrediby upset and sad to see their beloved dad so poorly, yours must be finding this so tough. Talking to our specialist nurse today I said that we are better at coping at the known than the unknown and this is certainly  how i have found it over the years that we have lived with the illness. I am a practical soul and if i can do something practical, then i can usually cope.  The other thing that keeps me going is hope. i feel so much better for having some hope, i know it can't last but for today, I have it. I hope you do too.

hugs to you and your lovely family 

Devonmaid xxxx 

User
Posted 17 Jan 2019 at 21:28

I popped on to see how things are with you and Nigel and I’m very surprised to see that you will be taking him home. You honestly never know with this illness, just when you think the fat lady is singing she stops and things change again. on the old forum we used to talk about locking that fat lady in the cellar! Somehow we always kept a sense of humour, even in the worst of times. 

I dread the practical care you are talking of, I'm really bad at that kind of thing and am just hoping that some part of me will just take over when and if that is needed. Its the lack of dignity that bothers me most, it seems wrong between husband and wife but maybe that's just because i haven't faced that yet. John has an SPC so we have lots of pee accidents and we've had a number of nasty laxido based troubles due to terrible constipation problems so maybe that is preparing me. Oh dear! For bettwr, for worse,in sickness and in health and all that.

John had a terrible pain last night, it was in his heel, like a screwdriver boring a hole he said. a referred pain no doubt. i was in the other room babysitting so missed it, he didn't have his morphine and didn't call me. The hospice nurse has advised loading a syringe to keep by the bed (the night bag contraption makes it dangerous to get out of bed at night) and that simple idea made so much sense. I'm glad we have her to help.

i wish you a quiet night, I'll be thinking of you all.

love Devonmaid xxx

 

 

User
Posted 18 Jan 2019 at 02:46
Yes, Devonmaid, auto pilot does tend to kick in when you need it to. I am surprised at how many things I can do which I would never have dreamed possible - but it did take me a while to put my practical hat on and work out a system of getting everything done in the most efficient and least stressful way we could. And somehow it is one of the things I can do now as a wife which has a chance of improving my husband's quality of life - at this stage it would be more intrusive if we got carers in, and we would have to work to their schedule not ours. We have learnt to manage the SPC over the last few years, but still have incontinence (of both types) to manage. Managing the pain and the mobility issues are another story. And I don't do wounds and blood well at all!

Kentish - it is wonderful to hear that there has been some improvement for Nigel. It sounds as though you are preparing as best you can for a return home, if and when that is feasible. I too found the most overwhelming thing was having to be responsible again. Even though I was doing most things for my husband while he was in hospital, the thought that there was backup there was a relief. On a more practical note - do you have or will you have a hospital bed at home? We don't use it for sleeping (yet), but my husband can't walk well at all now, so we use a shower commode to shower him, and from there onto the hospital bed so that I can get him dry and clean and change him. A godsend for my back. I watched how the nurses did it in hospital and we learnt the rolling trick - that has helped a lot. We can also raise the height of the bed so that he can use his walker - it is the only time he can do that. We haven't had to use a hoist yet, but that day may come - will one of those be available for you? I'm with you on all the practical things you have set up in the bathroom, but would also add disposable gloves and some hand gel. And I use a double layer of waterproof mattress protector on the bed (I just cut a single one up and place a large piece of that under the regular tuck in one - has saved us on a few occasions). Those slightly plastic backed big tissue like sheet things are handy too (called blueys here).

Since I am obviously coming out of the woodwork a little, I've altered my forum name from that random set of letters I chose a few years ago!

Love to you both.

User
Posted 19 Jan 2019 at 18:37

Kentish

You are doing a fantastic job looking after your OH, I am sure you will not let the shortcomings of others break your spirit and determination to do the best for your oh. Keep going gal.

Thanks Chris

User
Posted 20 Jan 2019 at 06:03
Aaaargh indeed Kentish. When you are trying to keep all those plates spinning in the air you don't need anyone else to not follow through properly. No wonder the air was blue - but glad to hear you had some friends to unload on. It makes a difference (as I find does furiously typing an email to a friend - the speed seems to help). I should refrain from mentioning that the consumption of ice cream, or pehaps chocolate assists me, but not my waistline.

How has N been? Did you get to the day centre successfully? And did you ever get to the bottom of the PSA figure you were being given and what the previous ones where?

And Lyn - thanks, yes a much better name. And yes, as with most things we have similarities and differences in treatment options (Radium 223 not yet funded here), scanning (yes, PSMAs available, but not funded), palliative care options. All complicated by questions of whether you use the mostly excellent public system or use your health insurance and the private system, and sometimes fall in the gap between the two.

Hope you've had a trouble free weekend, Kentish, and that I all concerned pull their fingers out on Monday and get it sorted. As others have said before me, you are a star.

User
Posted 20 Jan 2019 at 12:11

Its almost unbelievable how these admin things can be so difficult to resolve. the lack of compassion also seems impossible to bear. I dont know if the macmillan nurses could offer to help here, I’m pretty sure that they can help with a lot of the admin type burdens. They really are the straw that breaks the camel’s back.

i too am glad that you have good friends you can offload too, i genuinely think it makes all the difference. I have been thinking about you this weekend, especially as my hubby has been poorly. I can’t wait for tomorow to come and a new treatment to start. The fast deterioration is frightening to watch.   

Sending you love and hugs and to Teapot too xxx

Devonmaid xxx

User
Posted 21 Jan 2019 at 21:43

Ah weekends, they are just a big worry for sick people. so far our bete noir has been New Year’s Eves, 3 horrors so far in this journey, ghastly experiences mainly. But many more weekends in a year than NYEs! I think you are very wise to take that precaution. I went up to the hospital pharmacy today to collect the enzalutimide and they swore they hadn't received it. We were sent home to await a call that never came. I rang oncology in the end and of course, it was in pharamcy, I went back and the while thing started again. sigh. I did manage to get the meds in the end but what a palaver. The queue was out of the door too, i think I've got a brownie badge in waiting patiently now.

OMG, the nits! I remember getting them at school and wanting to poor boiling water over my head,luckily my brother stopped my lunacy. Disgusting things. You poor daughter. As if you haven't enough to deal with.

I hope things go well for you both for the move home, I feel your trepidation from here and am not surprised, it must be so scary for you. 

Sending love

Devonmaid xxx

User
Posted 25 Jan 2019 at 13:04

What a wonderful mum, that will make a huge difference.

N will be glad to be home.

Sounds like the care package is good.

Enjoy your breakfast!

Ido4

User
Posted 27 Jan 2019 at 02:16
I've been so pleased to read your updates, Kentish. So many positives there (kids growing out of the golden arches for one). Am hoping you are all now settling back comfortably into being at home.

The goal of seeing the sunset at the coast sounds wonderful. We can get H into the car with some effort, but his pain levels mean that any uneccessary trip is not possible - so sad, but we are kind of used to it as it has been this way for years.

Good luck for the visit to the oncologist on Monday. And for the day therapy centre later - a quiz would scrape over the borderline into acceptable here, I think :)

User
Posted 27 Jan 2019 at 09:57

Morning Kentish

i hope that you are coping well with everything and the weekend is turning out to be ok. I’ve been away as grandson was born Friday at 11.52, all natural this time except for a trip to theatre after (not sharing those details). Daughter likes mum to attend (second time now) so absolutely shattered after that experience. Hubby hasn't been well enough to see him yet, but little Indy is now home so hoping to get him over there today with luck.

always thinking of you 

Love Devonmaid xxxx

User
Posted 29 Jan 2019 at 08:14

Teacups, more of our lovely friends stepped in to help yesterday to get to the hospital :) A firefighter and a policewoman,  both with great manual handling skills. The best bit was using a black rubbish sack for slithering across the seat! N was actually able to stand from the wheelchair and then shuffle a little and sit straight onto the seat. It's a Honda Stepwagon, the seats are very high, not great for shorties like me but N has no trouble. Our friends came with us and waited then helped to get back in the car, followed us home and helped put him to bed again. I feel so lucky to have this support.

We met a new onco yesterday and our appointment was not one of doom and gloom, yay!

Radiotherapy to be booked for 1 zap of the prostate to try and improve bleeding and relive pressure in that area on the bowel/urethra etc. Onco thought given N's history so far he is likely to suffer some side effects such as diarrhoea etc.

Ct scan and bone scan booked to see what's what as psa has increased from 33 mid December to 203 last week.

Enzalutimide to be started in a couple of weeks, this is now available because the Abiraterone was working, psa Oct was 80 and on Abiraterone it had come down to 30'see but onco felt that N's problems in the last few weeks were due to poor tolerance of the Abiraterone in conjunction with SIADH treatment. So we get another drug, if N improves enough to start it.

Onco felt N will improve as his blood tests showed he was fairly stable now in terms of hb, sodium, potassium etc. Alp was 240, down from 400ish. 

Onco has a special interest in genomic treatments and gave me details.of the Barcode2 trial to go through with N, again, if he is well enough. He certainly isn't fit enough to travel at the moment or have any chemotherapy (carboplatin) if he was identified to have a suitable gene mutation for it.

N's legs are very painful this morning from yesterday's exertion but he is keen to get moving again, so the next couple of weeks will be focused on trying to regain some strength.

Xx

User
Posted 29 Jan 2019 at 11:45

Kentish

what a lovely, hopeful post this is. An oncologist that can give hope is a thing to treasure! John has had a week on enza so far and is ok so far. He’s not exactly well but I’d say better than he was so I’m hopeful for a decent response. We managed a walk in Cirencester yesterday so needs a day’s rest today. It’s wonderful that you have help with N, with such friends in your life at least you have decent people you can rely upon. Sometimes that’s the best we can ask for. 

Hoping you have a good day today

Lots  of love

Devonmaid xxx

User
Posted 02 Feb 2019 at 19:42
So sorry , sending all my wishes and strength to both of you :-(( xx

If life gives you lemons , then make lemonade

User
Posted 02 Feb 2019 at 20:34

Oh no

i had a horrible feeling that radio silence wasn’t good news. I’m so sorry. And now a tummy bug on top, just what you didn't need. Hugs.

love Devonmaid xxxx

User
Posted 03 Feb 2019 at 00:23

Oh no, Kentish.  Didn't like reading your update this morning.  Crappy enough that he is back in hospital, and why.  But just so, so hard that you can't be there with him.  Your lovely Mum and sister are worth their weight in gold though.

Wishing you a speedy recovery so that you can get in there, and for some improvement in N.

User
Posted 03 Feb 2019 at 13:16
Got a call at 8.30 this morning from Nigel that he was being taken to have tubes put in his kidneys as they were now completely blocked.

Rushed up to the hospital in time to accompany him to "intervention"

He has had 2 nephrostomy tubes put it and had another ultrasound. His kidneys are completely blocked and we are waiting for a doctor to tell us the "plan" .

Other than being absolutely shattered from lack of sleep, N seems quite positive that he'll be able to move forward with treatment.

This is what was offered last time we were here and N declined to be interfered with and chose the hospice. This time he feels like he may not be done yet.

Thank you for your support everyone.

Chris, they do the citric acid in the hospice and hospital but won't let me have it at home.x

User
Posted 04 Feb 2019 at 20:27

Hi Kentish

John had this too, he had emergency surgery for retention to insert a supra pubic catheter (SPC) then a Turp, then two catheters, hoping to remove the SPC. It disnt work, so they inserted kidney stents for a few weeks and give him RT to the prostate to see if that helped, it didn't. Then a decision was made to move his ureters to the top of his bladder, can’t remember the name of the operation, but it was quite something and saved his kidneys, which were, we told on the verge of catastrophic failure at the time of the op. Anyway, none of this has meant that the SPC has been able to be remove but it has stopped the kidney failure and is therefore a complete success. our consultant is from Egypt where they do this operation often and so was a safe pair of hands.  I wonder if this is worth a mention?

I can supply the name of our consultant if necessary, I’m sure he’d be delighted to have a chat with N’s doctors if this was a viable option. 

With love

Devonmaid

User
Posted 05 Feb 2019 at 04:20

Oh, no, Kentish.  This blasted roller coaster you are on isn't stopping is it.  It is hard enough for me to read the latest update, let alone you having to live through it.  I'm not surprised you are finding it hard to even breathe - but have you found enough breath yet to turn the air blue?  

I'm pleased at least to read that N is the most lucid and communicative he has been for a while (and glad you got into the hospital). Is urology's plan to now insert stents?  I hope that the planning for the radiotherapy does actually happen - I would have cried on the phone too.  More than frustrating, especially when at breaking point.

I hope you did get some sleep.  Hold onto that comfort blanket - it is impervious to water, so cry all you like into it.  

User
Posted 05 Feb 2019 at 08:58

Hi Kentish,

I am relatively new here, but just wanted to say I'm so sorry for the rough time you and N are having.  I'm praying you get a break.

Sending best wishes to you both 

Michaela x

User
Posted 05 Feb 2019 at 20:00

Kentish

Ill send you a private message with our urology consultants details. I am not allowed to name names here. 

lots of love

Devonmaid xxx

User
Posted 06 Feb 2019 at 03:25

Dear Kentish,

Just sending a big hug to you all.

Love from Vicky xx 

Broken crayons still colour ❣️

User
Posted 10 Feb 2019 at 17:46
Thinking of you each day x

If life gives you lemons , then make lemonade

User
Posted 13 Feb 2019 at 17:15

You are having to go through so much. I really feel for you!

Thinking of you all. 

Deb

User
Posted 13 Feb 2019 at 23:43

Dear Kentish,

I haven’t had chance to visit here until now.

What a roller coaster ride. KFC moments and giggles. Souless consultants and booking blunders. 

You are truly amazing and being a fantastic wife and mom/mum. (I’m a yam yam so we say mom).

I think of you often and send my love for tomorrow.

Vicky xx 

Broken crayons still colour ❣️

User
Posted 14 Feb 2019 at 05:30

Oh dear, Kentish.  I sometimes wonder how consultants would like a close member of their family treated.  Our health systems would be so much better if communication and admin was improved.  Just reading a forum such as this would provide them with some good educational case studies.

I'm glad to hear the kids and KFC story, and that N felt up to eating 3 pieces.  But getting him through the stuff ups, baulking at the scan and the pain must have been hard.  And pleased to see that the eGFR is good - yes, take whatever positives you can.

Thinking of you today.

User
Posted 14 Feb 2019 at 10:18
Kentish

I too send my best wishes and hopes that things improve.

Teacups

The problem is that like most Civil Service organisations, the NHS is a silo organisation par excellence. In a lot of cases, they only view their own little area of interest and have little concern about the process that flows across areas and the overall performance. This is why there are so many disjointed systems and processes. The GP / hospital interface is absolutely the worst example of this.

User
Posted 15 Feb 2019 at 00:04

I have read your story and think you and your whole family are amazing. It is the little things that matter most like your family time and KFC. A touch of normality in the middle of all that is going on. I wish you all well. My oh has always wanted to just trust his consultant and accept each treatment as it becomes necessary without asking too many questions. I ask some to clarify things but there are many things I do not know. Much has changed over the last year but my oh stays positive and we try to do everything we can. I feel so sad for you and what you have gone through. I suppose a part of me is scared of not being as strong as you have been if things don't go as hoped for us. You are an inspiration and I hope that if there are more treatment options for your husband that may help, that it can be sorted out soon. He is a very brave man and has a lovely family.

 

 

 

 

User
Posted 15 Feb 2019 at 01:56

Originally Posted by: Online Community Member

What I would hate the most is feeling like I didn't do enough when N couldn't ask for himself. Ever present in my mind is his DNR and if I'll have to act on it at home or elsewhere, I don't think the bods in charge appreciate the overwhelming stress the situation can bring, unless perhaps they have been there themselves.

 

I don't think they have any idea how stressful it is to constantly be thinking for someone else, and making such critical decisions.  Not sure it helps, but you strike me as someone who is a very clear thinking, organised, compassionate person who is just trying to make life the best it possibly can be for N.  You've done an incredible job so far.

Breakfast with the kids sounds good.  And videos of their adventures will hopefully bring a smile to both your faces.  Hoping that today is indeed a quiet one.

We are having a quiet day which I didn't expect.  Were due to go to have a scan this morning, after seeing the pain specialist this week in the middle of a full blown pain meltdown.  Had to cancel the scan, as there was no way I could get H into the car for the 5 minute trip to the hospital.  I suspect the next step is back into hospital, but we'll see ...

Sending the usual hugs, etc.  I'm about to go and eat ice cream (thankfully my latest tests showed my cholesterol hasn't increased too much).

Edited by member 15 Feb 2019 at 01:57  | Reason: Can't get the hang of quoting

User
Posted 17 Feb 2019 at 20:43
Don’t kick yourself... we put our trust in the medics and trust they know what they are doing. Sometimes though if makes us wonder. I feel your frustration.

Hope tomorrow is a better day

Take care

Bri x

User
Posted 18 Feb 2019 at 09:25

Hope today has been better than the mixed bag of yesterday.  I know how hard it is not to kick yourself, but how are we supposed to be able to second guess every decision in real time while at the end of our tether.  Hope N is in less pain now, and that clinic/transfer to hospice went OK.

As expected, we are back in hospital.  And now have a reason for the increased pain - more fractures, dammit.  Add a UTI, one quite confused husband and you get the picture.  Grrr.

 

User
Posted 19 Feb 2019 at 18:23
N's cancer symptoms are like a seesaw, sometimes violently swinging up and down, other times more gently.

1ltr of fluid given yesterday has brought hb down from 84 to 72, if it improves tomorrow they won't transfuse, just let it climb by itself.

Sodium only improved by 1 point so endocrine team have suggested to go back onto the demeclocycline whilst as an inpatient.

Apparently the kidney failure masked the SIADH, because they were struggling N was not excreting the sodium like before, now the kidneys are working well (yay) the SIADH is a problem.

Fluids temporarily restricted to 1.5 ltr per day to help with improving the sodium, N not happy as has been drinking whatever, whenever he likes which has been lovely. Plus not great for clots etc and keeping the bladder and kidneys healthy.

Haematuria appears to have stopped, pain management have increased break through pain relief to 10mg oxycodone every 4 hours which seems to be working.

Hospice put back on hold until he's stable, not going to be this week 😕

User
Posted 20 Feb 2019 at 18:36
😱 I missed the new baby?????
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Feb 2019 at 21:48

Sending love, Kentish.  Forgive the brevity - setting off for the hospital so I can calm him down again when he wakes up and wants to know why is is there, again.  I'm with you in the tears.

 

DM - so good to see your message, was worrying about how you were.  I am the mouthpiece, but only allowed under strict instructions about what I can say.  Usual line is don't tell doctors too much, don't be too eager, etc.  At the moment it is don't tell anyone how nauseous he is all day.

 

In between the awfulness of the last week I did get him to hold my hand and walk with me in our minds along the edge of the Wirral and look across to Wales.  Let's be grateful for that.

 

 

User
Posted 20 Feb 2019 at 23:40

Originally Posted by: Online Community Member

What a band of women we are. I for one am proud of us,

love to you both and all of those suffering 

Devonmaid xxxx

 

I think we are all very proud of you.

Thanks Chris

Edited by member 20 Feb 2019 at 23:41  | Reason: Not specified

User
Posted 23 Feb 2019 at 23:56

Oh dear, is there room on that see saw for all three of us?  We are still in hospital, but working on getting him home.  He will be much more settled in familiar surroundings where people aren't telling him what to do. Seeing them distressed is so damn hard, isn't it. Now on a syringe driver, so pain better, but even sitting up a little in bed for the first attempt at a shave yesterday was hard.

Hope N gets to enjoy all the stories from the skiing.  We are getting updates from the 18 year old granddaughter who is on her first tour of Europe and that is providing some much needed distraction.  DM - the weekend sounds fabulous, so glad you got to do it.  But sorry to hear the worry in the rest of your news.

User
Posted 24 Feb 2019 at 07:17
Dear DM and Teacups,

Sorry to hear your oh's are struggling too. You can both share the seesaw with me if you like, let's see if we can get it to stop crashing up and down and instead gently rock!!

Sending big hugs your way, I hope for all of us, today is better than yesterday.xxxx

User
Posted 27 Feb 2019 at 21:19
Teacups, I hope being home is going ok and that you've managed to get some more support. It sounds lovely to be sleeping next to one another. I really miss being together, I sleep really badly, finding myself sprawling all over the bed and awake at 4am wondering if it's time to get up...I'm so tired I can't think straight but don't seem to be able to sleep any better.

N is not sleeping on and off all day like he was, and managed to stand up for a couple of minutes using his walking frame. No beds yet but feeling positive about how stable he is. Sodium back up to 130 which makes a big difference and hb stabilised at 75 and climbing slowly each day.

N has the goal of the next clinic in mind. Rescheduled for mid March, he's aiming to be able to tolerate sitting in the wheelchair so he can attend this. Having trouble maintaining his blood pressure because of the low fluid intake, averaging at around 99/65, which leaves him feeling quite lightheaded when he sits on the side of the bed with his feet on the floor. Not sure what can be done to improve this.

Back to not pooping, docs think it was the co-amoxiclav giving N the trots and stopped it after 3 days, N has probably got another uti as he spiked a temperature 2 days in a row. Back onto the movicol to get things moving sooner rather than later, N doesn't want to do any more enemas if he can avoid it.

I can't believe 4 weeks have passed since N was admitted this time, the days just disappear even though we don't do anything!

User
Posted 01 Mar 2019 at 12:43

Although N is feeling marginally better in himself the reality is pretty awful. Ct scan showed extensive liver and lung secondaries, so bad the onco didn't feel Enzo would be very effective but is happy for N to try in the hope it may improve N enough to try Cabazitaxel.
He was straight up with N that his liver is coping but is so badly diseased it may fail at any time and there will only be weeks left at that point.
Onco will circumvent "new patient " clinic and prescribe the Enzo. N understandably knocked for 6, we didn't expect anything other than bad news given his current state but it's still hard to swallow.
He doesn't want to come home now if there isn't a bed at the hospice, I get that he feels precarious and stress is not helpful in feeling any better.
Back to one foot in front of the other :(

Edited by member 01 Mar 2019 at 12:45  | Reason: Not specified

User
Posted 02 Mar 2019 at 20:57

Words are all I can offer you both right now, loads of hope and love, keep strong .

Chris.

User
Posted 02 Mar 2019 at 20:59

Thank you @ Deblc

Thank you @Merrivale, I think “struggle” is a good description, nothing about this has ever been easy has it!. It’s so easy to get caught up in frantically trying to make things better that its easy to lose sight of the actual living bit. N and I played Rummy (card game) today, for the first time in a long time it felt like we were doing something other than thinking about this disease and its effects. I’m trying to keep myself healthy in both mind and body but I’ve just got over a rotten head cold and the tears keep falling, I don’t know about strong, I think I’m just dogged.

Thank you @ Mrs & Mr L, I don’t think there are any words, just thoughts, and cyber hugs and knowing that I’m not alone even if your paths are not the same as mine. Everyone has experienced grief at some point and can identify with how we are feeling. I appreciate your words, I often don’t know what to write on other posts either.xx

Thank you @Devonmaid, Glad to hear you got away, sorry to hear John wasn’t able to come on any walks, its really tough when they are left out/behind. I don’t know how you feel but I feel really guilty about doing anything “nice” that N couldn’t join in. That’s awful that your appointment was cancelled, I hope your new appointment is soon. Waiting and wondering is exhausting as is the effort of trying not to wonder!
This mornings urologist said he had spoken to the onco and asked if we had too, N said “yes, its not good” and the urologist agreed and said that it would be better to stay in hospital until there is a bed at the hospice rather than going home on Monday if there were still no beds available. After he left, N said to me “You know if I go to the hospice this time I might not be coming out” It’s so sad to hear him acknowledge this out loud but I’m glad I don’t have to pretend otherwise. In his usual way once this was said he moved on to a different subject and when asked by others how it was going, told them he was going to start a new drug and hopefully build himself up for the chemo. Whether this happens or not is irrelevant, his intentions are what’s important.

Thank you @ Chris J, I am only ever scared of the unknown, being told about the scan and the likely symptoms N will experience is truly awful but not frightening. I just want to know how his symptoms can be managed as they arise to relieve him of pain and discomfort. This doesn’t always mean being off his **** on OXYNorm!! Although he does seem to quite like it 😉.

Sending you all big hugs and best wishes for you own situations.
xxKatie

Edited by moderator 02 Mar 2019 at 21:21  | Reason: Not specified

User
Posted 02 Mar 2019 at 22:33
I am so sorry that things have become so hard for you both and pray that there is something that can be done and that a hospice bed is available soon.

Thinking of you and praying for you.

User
Posted 02 Mar 2019 at 23:22

Dear Kentish,

Sending love and hugs to you all. Heartbreaking for you,

Vicky xx

Broken crayons still colour ❣️

User
Posted 03 Mar 2019 at 08:57
Hi Kentish

Sending hugs. Been reading your posts recently and feel for you. You are doing an amazing job. Lots of love.

User
Posted 04 Mar 2019 at 04:00

Kentish, Hope the past day or two has been OK.  So hard to hear N acknowledge what is happening.  But yes, both recognising it does help somewhat.  Bless him for always looking forward to the next possibility too.  Like you, I am best when I have some idea of what is to come. But it does still frighten me.  As you say, managing the symptoms and comfort are the aim.  At our place we are doing that, but the result is one sleeping beauty a lot of the time.

Devonmaid - I loved hearing of your weekend away.  So good for you both to have that time with the family.  We have very fond memories of time spent near the Forest of Dean - have stayed a couple of times at Symonds Yat.  But yes, it is very hard when you can't both enjoy walks.  And hard to enjoy something you once would have done together. My profile is a very brief sketch, I'm afraid.  But it gives you a general idea.

Love to you both.

User
Posted 09 Mar 2019 at 15:04
Thanks Tom, that's very kind of you.xx

DM, I didn't see your message when I uploaded earlier, I must have been writing it as you posted.

The kids are "ok", I think this is as good as it will get. They realise that N is iller than ever and we have talked about him maybe not being able to come home this time. It is easy to just sit with one another at the hospice and they need to be with me and N after such a long period in the hospital where they only visited a few times.

They aren't interested in the social workers, they have both had initial meetings and then declined anymore. I think they talk more to the staff especially the auxillaries/csw's, they are very down to earth and just come straight out with the difficult questions.

Lots of people offer to sit with N so I can have a break/rest but at this stage I don't really want to, I'm not sure everyone understands this or me, I want to sit while he's sleeping, I don't feel any desire to get away from it and I just worry when I'm not here. I am not "waiting" we are just being together. We haven't had long enough together and I don't want to miss a moment, I want to make the most of the moments when he is wide awake and it's so easy to miss these.

Everyone does it differently, and at the moment I need to be with him to make me feel ok.

I hope you are able to go to Portugal, it sounds lovely, I would add surfing into the mix for my ideal week away, and catered, I'd never manage a week without solid food ;) In my mind, me and the kids will be going away together to readjust at some point this year. I hold onto that thought as a point of light in the future.

Oh Teacups, I know what you mean, I really don't want N to resent being kept at the hospice or having any interventions that make things worse, it really is my one of my biggest worries. I try to give N control over everything he can, when to be washed/changed/eat, what to eat and who visits and what drugs he wants/doesn't want otherwise I feel like he has no control anymore and is just being "kept".

I hope the support you get helps you through this really difficult time. Thinking of you.xx

User
Posted 11 Mar 2019 at 00:33

Dear Kentish,

Sending the biggest hug ever,

love from Vicky xx

Broken crayons still colour ❣️

User
Posted 13 Mar 2019 at 15:22

Originally Posted by: Online Community Member

We are back in hospital, sadly.  The last week at home has been very difficult, and sadly in H's very confused state he has decided that I wasn't getting him the help he needed, so is now so angry with me and doesn't want me near him.  Heartbroken doesn't begin to describe it.

Teacups I feel so much for you. Hugs and more hugs. Hope he comes to realise that you have done your best in very difficult circumstances.

Kentish Hugs to you as well, keep going you are doing so well.

User
Posted 14 Mar 2019 at 01:19

Devonmaid, you aren't rambling at all.  You are always so understanding and insightful.  And thank you for sharing some of those stories.  I thought seriously about whether to post my message yesterday, but as you say we've always tried to be real here.

I'm happy (boy is that an understatement) to report that today is a better day.  While he is in hospital he is actually on an oncology/palliative ward, under the care of palliative specialists.  They've changed/ increased the sedative, so I came in this morning to hugs and tears.  We feel something is likely going on in his brain, but whether it is meds, mets, or whatever else who knows.  His emotions are all over the place, and he has been holding his head a lot.  But at least he is comfortable, well cared for and not too far from home.  And thank god I've been able to hold his hand and tell him I love him. And like your sister forgetting may be difficult.

Love to you all.

Edited by member 14 Mar 2019 at 01:21  | Reason: Not specified

User
Posted 14 Mar 2019 at 07:48

What wonderful, strong and loving ladies you  all are. When i read your updates i am usually driven to tears. I hope i have learnt from your stories to understand better my other halfs journey is parallel to mine but not exactly the same.

All i can say is i send you all my love and hugs and hope today is a good day for you all.

Phil

User
Posted 17 Mar 2019 at 23:08

Thank you Devonmaid, you do understand, I know.  And you do convey it. Calm on the outside, but even that is a very very thin veneer now.  Had to warn those outside the tight immediate inner circle yesterday, so a tough day.

I've been in here for a while this morning.  Still peaceful, and I'm running Jerusalem, Land of Hope and Glory and now some welsh hymns through our little speaker.  So all is as good as it can be in these terrible times.

Kentish - love to you.  I hope today has been OK.

Edited by member 17 Mar 2019 at 23:59  | Reason: Not specified

User
Posted 18 Mar 2019 at 11:10

Lyn - thank you.  And Devonmaid - parts of your retreat sound absolutely wonderful (note that I said parts!).  And yes, it would be lovely if we could all go.  But it is so good that you can go.  Hope you do come back refreshed and renewed.

User
Posted 19 Mar 2019 at 23:04

That's fabulous news DM,  I'm so glad for you and John. Long may it last.xxx

N is looking at the "horse pills" with a suspicious eye. He did ask if he swallowed them or if they went up the b*m they're so big!

Sodium only up to 118, another radiotherapy session cancelled but N happy enough between naps. Can't ask for more than that at the moment. X

User
Posted 20 Mar 2019 at 00:55
Fantastic news Devonmaid - was it the Enza or the new baby that gave him such a boost?

Kentish, hoping for another peaceful uneventful day for you tomorrow x

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

User
Posted 20 Mar 2019 at 01:37

What wonderful news, Devonmaid.  Gladdened my heart.  To have that time when he is feeling better, and then to have the results confirming  is wonderful.

And Kentish, happy enough between naps is indeed a good thing.  Long may it continue.

We are still here and amazed we are.  But family have managed to fly in in time now.  I think this extra time has been a gift, really, and allowed me some breathing space.  

Love to you all.

User
Posted 20 Mar 2019 at 06:59

great news devonmaid xx

User
Posted 21 Mar 2019 at 15:52

So sorry to hear this Teacups. Thinking of you.

Ido4

User
Posted 21 Mar 2019 at 19:30
Dear Teacups,

My heartfelt sympathy goes out to you. I'm so glad H wasn't in pain, it's what we all want isn't it, to have someone go gently and peacefully. Lean on others my friend, sometimes it's hard to let go for fear of never being able to get up.

I wish you peace in the coming days, and I wanted to say that your grief is welcome here if you need to share it.

Xxx

User
Posted 03 Apr 2019 at 21:32
Thanks for your replies, a follow up call from the hospice this evening suggested they had a couple more avenues to try. It is not the hospice who can't provide the night sitters but Continuing Care who are an NHS branch. The hospice said they would keep N to do the diary but he was so sad at the thought of staying longer, he flat out said it didn't matter and he just wants to come home. He can't see the impact of the level of care he needs because he is too ill to grasp it. He doesn't know what day it is and spends a lot of effort trying to work out what the time is each time he comes to.

You're right Lynn, I'll ask for recommendations and start there, I just feel so anxious I can't think straight. Got to get a grip.

User
Posted 03 Apr 2019 at 22:58

Originally Posted by: Online Community Member
 I just feel so anxious I can't think straight. Got to get a grip.

 

Please try to stay away from that kind of negative thought. It isn't that you need to get a grip - how can anyone be expected to grasp this type of situation that is happening at the wrong point in your life? We are not wired to cope with the loss of someone too early, and not all partners are wired to be carers ... not all partners want to be carers and not everyone wants to be cared for by their closest relatives. I have found that I am very good at it which is surprising because I am not empathetic by nature - maybe that is why it has worked; I can be detached and process driven rather than responding emotionally. My dad and mother-in-law could not have done the caring; they needed to be the wife or husband.

 

I wish we could take away your anxiety but we can't - blanket is on its way back to you as a surrogate xxx     

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

User
Posted 09 Apr 2019 at 21:19
Well, we managed to have almost a week at home. Pain relief has been increased to 50mcg fentanyl patch, he has edema in his hands and feet, hardly eaten and hardly drinking because he's mostly asleep. A temperature this morning and loads of phlegm have indicated either chest infection or mucus build up. Either way, both the community nurse and the palliative care nurse felt that moving back to the hospice would be in everyone's best interest. So he goes back tomorrow, he's so tired he's just accepted it. I asked him if he wanted to change his mind and stay at home but he was definite in his choice. I feel robbed of the peace and quiet at home; although it's mentally stressful, it's calm and quiet in our house.

I am glad we managed to have these few days at home which were nice and we managed to spend some time together as a family. Xx

User
Posted 15 Apr 2019 at 10:22

Oh my dear Kentish,  such sad news.  We know it wasn't unexpected, and we can be glad he is not suffering, but that doesn't stop our hearts breaking, does it.  And we know that we have grieved a lot already, but that doesn't stop the tears falling. 

 

You may well feel numb for a while, too.  And lost.  And we will all say 'look after yourself', which indeed you must try to do.  But really, just take it easy, hold those beautiful children close and let yourself remember all the good times.  Know too that you did absolutely everything you could to make these last months and years for N as good as they possibly could be.  You were his champion, and an outstanding one at that.  

 

Sending love, hugs and understanding.  I'm here if you ever need a listening ear.

User
Posted 06 Jul 2019 at 09:32

Hi Kentish

i don’t know if you will read this but I wanted you to know that I think about you and Teacups every single day. I was hoping you would let us know how things are going for you and the children. It’s so gratifying to hear that they have done their best in the most appalling situation, their strength is simply amazing.  Your own strength became legendary here and I hope you can remember that. The trauma you have been through (and it surely was) was awful to witness even from afar, but I’m hoping that we here have been a little help, just by being a listening ear. I know that I need that now as John and I travel towards that place. 

My heartfelt best wishes go with you and my hopes that you and the children will recover, with time, from the events of this terrible time in your lives.

with love and hope for the future

Devonmaid (Allison) xxxx

User
Posted 06 Jul 2019 at 10:05

What an amazing fund raiser your daughter has done.

We all followed your posts and felt your pain.

You, your daughter and son did an amazing job.

I am sure everything is still very raw but hope that over time you can rebuild physically, mentally and emotionally. Thank you for checking in again.

Love,

 

 

 

Ido4

Show Most Thanked Posts
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.

Ido4

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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