I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search



Making the most of it

Posted 21 Mar 2019 at 21:14

A really sad story, but thanks for sharing it here. It is important that those who want to can read about all aspects of this awful disease. You have both been so strong and brave. In the future you will remember the good times. Look after yourself now.

Condolences and best wishes


Posted 21 Mar 2019 at 21:56
So sorry to hear of your loss -thinking of you. Praying you and your family will find comfort in each other in the coming days. Gilly.
Posted 21 Mar 2019 at 22:37

I'm so sorry to read of your sad news Teacup.  I have been following this thread for a while now and I think you are a remarkable lady.  So glad it was a peaceful end, and I wish you strength and peace for the hours, days and weeks ahead. May your husband rest in peace now, and that you can find peace.


Posted 22 Mar 2019 at 10:47

So sorry to hear your sad news, my thoughts are with you and your family xx


Edited by member 22 Mar 2019 at 10:48  | Reason: spelling

Posted 22 Mar 2019 at 10:57
So sorry to hear your sad news. Thoughts are with you and your family

Bri xx

Posted 22 Mar 2019 at 11:45

Thank you so much to all of you - what kind words and strengthening support from you all.  We are doing OK.

Devonmaid and Kentish - I think of you as my sisters in arms - thank you for your insight and understanding.  I can most definitely feel the love across the airwaves.

Kentish - hoping you've had some reasonable days.

Posted 22 Mar 2019 at 14:51
Thank you Teacups, it has made a massive difference to find the support we offer one another.

Nige decided to take the Enza today, and they have found a reclining wheelchair for him to try tomorrow. On the upward swing of this roller coaster again, long may it take to reach the top.

Thinking of you Teacups, and thank you for still thinking of us.xx

Posted 22 Mar 2019 at 14:56
Teacups, you were as brave as a lion - so pleased that it was a peaceful ending. I am thinking of you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 22 Mar 2019 at 16:54


As a regular reader of your posts, like many others, I feel really  sad for you and yours. The strength and hope I have gained personally from your journey has been immense. My family hope to emulate the time you had together since diagnosis. Heartfelt condolences. 


Posted 29 Mar 2019 at 15:13


i am on my retreat in Portugal and found a small amount of internet to let you know that you remain in my thoughts as the days pass. you will never be alone here. 


Is it too much to ask that the Enzo is making a difference? I sincerely hope so.

with love from the juicy oasis in Portugal, where Brexit and cancer doesn’t exist.

with my love

Devonmaid xxxx

Posted 01 Apr 2019 at 12:31

Your juicy oasis sounds perfect, Devonmaid.  And thank you for keeping us in your thoughts.  We have made it through a busy and emotional week as we prepared the most appropriate farewell for H.  So pleased we managed to get through it all.  I still have the company of our granddaughter for a couple of weeks, so am enjoying my time with her.

Kentish - I've been checking in most days, just to see if there are any updates from you.  You've been on my mind all week.  Sending love across these airwaves.

Posted 03 Apr 2019 at 15:08
I thought I’d leave this thread quiet for a while out of respect for Teacups and H. Still thinking of you Teacups, Thank you for thinking of us.xx

N’s upward swing lasted a few days, results back today (26/3/19) show a severe infection, probably uti, and very poor renal function, probably the demeclocycline. So back on co-amoxiclav and stopped taking the demeclocycline. N also chose to stop the enza , he was having trouble taking them and felt it wasn’t really going to help. Who knows? So his renal function is expected to improve and they are hoping to get on top of the infection. However, N was asked if he would want to have intravenous antibiotics and Iv fluid if the oral antibiotics didn’t work. N has chosen to not go back to hospital, of course he may change his mind but at least I know what he wants at this moment in time.

The plan is for N to come home again, I don’t know how many times “this is not a long term facility” has been said but it’s clear they think he has long enough to be able to come home. I cannot put into words how distressing this is. I’ve talked to the kids and explained that I will do the best I can. But this feels like a hopeless situation.

N wants to come home and he can’t stay at the hospice, there are nursing homes locally but some of the hospice patients have been in them and had to come back to the hospice because the care home couldn’t cater for their medical needs. This does not inspire confidence and N asked me not to put him in a home.

I have asked for night care to be added to our package and when this is confirmed he’ll come home.

28/03/19: N has been about the same for a couple.of days, taking the antibiotics and just getting on with it really. He’s very weak and a bit confused at times but on the whole he just sleeps and chats a bit when he wakes up. I know that the sodium will be falling and me and the kids are making the most of lucidity while he has it.

30/3/19: N is ok but very tired, finding the energy to drink his coffee is an effort and he just wants to sleep.

31/03/19: A little better than yesterday but much the same, the kids came up and we watched a bit of a film for an hour together, they are coping as well as can be expected. Son finding it hard to concentrate on his A levels so I have asked to talk to school to see what they can do to help him through these last few weeks. He flatly refused to talk to anyone at the hospice again but was open with me that he is struggling. I asked a social worker for guidance on what to say, I just don’t know what to do for the best, I certainly don’t want to say the wrong thing and make it worse!

01/04/19: Things are much the same. A little more sleepy.

02/04/19: Just a bit more slurred than the day before. Set to come home Thursday, he’s looking forward to it. It feels me with dread, of course I want him to be at home and for it to be the same as the last few days but the anxiety I feel over losing the safety net of the doctors and nurses is almost overwhelming.

03/04/19: Much more slurred than earlier in the week, a bit more confused and started talking to himself and staring into the distance again. Finishes antibiotics today so probably not infection, probably sodium.

Son has broken up with his girlfriend of a year, He said he’s been unhappy for a while but we’ve had such a shitty few months that there was never a good time to break up.

And to top off the day, no night care...got to keep a diary to prove he needs it. Other options presented were, pay for it privately, which I’m willing to do but how will I know if they’re nice or not, got to have faith and I’m sadly lacking in that at the moment. I asked about Marie Curie referral and the answer was that they have never been allocated to our area which is probably down to funding. Or ask friends and family to rotate care, poor Nigel, the only way I can see that working is to be on night duty myself and ask friends and family to sit during the day when there are at least carers to come out. Was told, you have carers 4 times a day, the morning one can sort out anything that’s happened in the night!! Sit in mess from possibly 11pm (the latest the carers come) until anytime between 7 am and 11am (the 4 hour morning time slot )? What planet do these people live on!

Posted 03 Apr 2019 at 17:55

This is beyond sad, I feel so angry for you and your family, what has happened to this country when help which is so obviously needed is withheld. I have never been in your situation, but I have struggled to cope at night with a seriously ill husband and I clearly recall how much worse everything seems during the night.

Keep trying every avenue to get help, for the sake of yourself and the children try not to allow him to be sent home unless something is sorted out.

love and prayers being sent to you.

Mike's Mum

Posted 03 Apr 2019 at 20:06
Kentish I really feel for you. Not at that stage yet but remember how difficult it was with mother in law trying to get night time help. It is possible but they just hope family will do it. Try to ask again and again if possible as you will not be able to cope during the day if you have no sleep at night.

I send my best wishes in what I realise is a very difficult situation.


Posted 03 Apr 2019 at 20:49
On the face of it, it seems harsh not to provide night sitters free of charge but from experience, I learnt that their view is that is why you are paid PIP or other social care benefits - to pay for the care and equipment the person needs. The hospice social worker should be able to tell you of companies / charities in your area that they have come across, and although you can't know for sure that they are nice people in reality you will get to know the team because you won't tend to go to bed the minute the carer walks through the door. I used to stay up with the carer until the small hours and then grab a few hours once I felt all was under control & settled.

So sad for your son - the school will have a Designated Safeguarding Lead (usually also the Head of pastoral care or similar) who should be aware of their responsibility to support your son emotionally / practically and also should know when / whether to contact the exam board for special consideration / extenuating circumstances.

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

Posted 03 Apr 2019 at 21:08

I am so sorry to read of all your going through.  It’s atrocious timing for your son with his A levels coming up.  As well as the school submitting a request for special consideration to the exam boards, if he is planning to go to university, call the admissions team and explain what is happening.  They can put a flag on his application and if he marginally misses his required grades, they may still admit him.  I’m a secondary school headteacher - send me a message if you need any more advice on this.

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.

Posted 03 Apr 2019 at 22:22
Ulster man, school are doing the exam thing and I'll contact the admissions team of the uni's. Not much I can do about teenage heartbreak though...but omg, kids do pick their moments!!!
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

Posted 04 Apr 2019 at 07:54
Thanks Lynn, it's not the caring that I'm anxious about , it's the hamster wheel of a&e.

N's preferred place to go when the next deterioration occurs is the hospice, however if they do not have an available bed it is either, stay at home (this will depend on the type of deterioration ) or go to hospital. Once in hospital he is no longer a priority for a bed at the hospice. To get back on this merry-go-round is what makes my heart thud, N's track record for admission to hospital is what makes me nervous, the physical and emotional caring for him is the easy part but the medical care is out of my hands and very much always done in a crisis. I think it is anticipatory anxiety, which is what I meant by "get a grip" it hasn't happened yet so I need to try and settle that anxiety instead of letting it be overwhelming. It requires a conscious effort to stop the circle of thoughts going around in my head, it's just this time seems a bit harder than before.xx

Posted 04 Apr 2019 at 09:06


oh my word, I am in floods of tears here at what you are going through, how in a civilised society can you be expected to cope with someone so seriously ill on your own. Like you say, it’s not even the cari aspect, it’s the medical care that is so frightening to deal with. Can your hospice not offer Hospice at home? My sister was offered hospital at home until she was admitted for the last time and died, it was a huge help as she hated hospital but needed medical care, although she had no one at home (she was widowed at a young age). Several former members here have had Hospice at home and I know it is offered locally. You need so much support to care for someone so Ill at home. I do wonder how PIP could possibly pay for night care, I imagine it would go on one or two nights’s care. I can’t believe it is meant for that, it’s meant to be the additional costs of care but surely not that. I am so sorry N didn’t continue with the Enzalutimide, but I think he sounds like he has given up and who could blame him. Being told you only have a short time left maybe makes you think (in lucid moments) that it isn’t worth extending a life that is so poor. I know it’s worked wonders for us, although it hasn’t stopped the pain so I don’t pretend it will last forever but I live Day by day and try to enjoy. I know the time will come, as it has for you the last goodness knows how many months, when you live Day by day and enjoy very little. Your poor son, the break up is rubbish timing and yet he probably has no space left in his life for anyone else at the moment anyway.  My heart breaks for him and what he is enduring at such a young age. So much for you to care about Kentish, the immediate issues with N and the longer term impact on your lovely children. I do hope the educational teams will support him through, both Lyn and Ulsterman are great fountains of knowledge when it comes to these matters, thank goodness we have lovely people like that here.

Enough rambling, I hope this gets sorted out for you, I only wish we could rally round and help you out. Such a tough time for your family. Damned disease.

My love goes to you and the children,

Devonmaid xxxxxx


Posted 04 Apr 2019 at 21:55
DM, thank you, I'm with you on every point. Having found the average rate of night care is £15/hour, there's no way PIP would cover 2 nights a week.

Anyway, p**s poor communication again....the local provider of services MCH, do indeed provide night sitters and a referral has been made and hopefully at least 1 night will be in place for next week. Continuing Care wanted the diary etc but it is the CCG for our area who provide the carers not Continuing Care. A little infuriating to say the least! I can't be the first person to have asked for this service..I would have thought both Continuing Care and the hospice team would have known. I have spent a fair amount of time alternately worrying and arranging an army of friends to take turns. ..all unnecessarily, hhhrmmmph.

And so he is home, I have administered optiflow bladder flushes, various controlled narcotics and also a fragmin injection, changed him several times, used a slide sheet on my own and tried very hard to squash the palpitations in my chest. We have watched the pilot episode of a series called the umbrella academy, weird but we liked it, and eaten Maccie D's with the kids. We will be ok. I hope he bl**dy sleeps!!

But no sign of any carers, I truly cannot be ars*d to deal with it tonight, I shall ring them in the morning to find out what's happening.....ffs, why us???

Posted 04 Apr 2019 at 22:50
Sounds like someone needs to sort out what help should be there. This should NOT happen. So sorry. Hugs
Posted 05 Apr 2019 at 06:14
I’ve experienced first hand how hard caring is. It shouldn’t be done on your own as you’ll end up crocked. I’m determined I wouldn’t want this on my wife ever when it comes to it. Sending wishes as ever. Awful situation x

If life gives you lemons , then make lemonade

Posted 05 Apr 2019 at 07:19
Hi Chris, I don't think anyone would want this for their spouse, however, I love N so very much and I wouldn't have it any other way (the caring). I would of course give my left arm for paperwork, admin, communication and organisation to not be how it is. It makes life harder than it needs to be and detracts from the precious moments we could be having.

The carers rung last night at 9.45, we had been allocated the 7pm-11pm slot, again, this is down to cr*p communication. We were expecting to see someone from the 3-7 slot. As it was, we had a nice bit of family time and that's what was important about N coming home.

I'm not sure how best to put it but if I wasn't looking after N, I'd feel like I wasn't properly being his wife and loving every bit of him, no matter how grimy this is. I'm glad he let's me.

7mg of zopiclone meant he didn't move from 9.30pm until about 5.30am, we're just enjoying a coffee and listening to the kids get ready for the last day of school, then I think, maybe episode 2 of the umbrella academy ;)

Posted 05 Apr 2019 at 18:54

Bri xx

Posted 05 Apr 2019 at 19:21
The Zopiclone is a great idea. I take the 7.5ug also. It’s not a sedative , it just trips you into the sleep cycle but is ruined if you are awoken by noise etc. May be a silly suggestion but when I desperately need sleep I use this but put ear plugs in also. Would this be an option for you ? We are all so proud of you. You may feel like you are cracking , but all we can see is a Lioness as proud and strong and capable as any living thing. You are an amazing wife and mother x

If life gives you lemons , then make lemonade

Posted 05 Apr 2019 at 19:34
I second that
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 05 Apr 2019 at 20:06
Can I third that
Posted 05 Apr 2019 at 21:18
Aw shucks guys😢😢😢😢

1st night sitters will be next Wednesday 10pm-6 am, carers have also been doubled so 2 come 4 times a day.

Chris, he's so deaf he doesn't need an ear plug! We live in a no through road, so only the sound of people parking their cars or trying to turn around...the noisiest thing is his air mattress!


Posted 05 Apr 2019 at 22:05

Thank goodness he’s home in the loving care of his family. Your love shines through, but what an ordeal, as you say it feels like a battle just to get the support you need. It’s so wrong, you’d think everyone would be rallying round, but no. 

On the plus side, nice to hear you had some family time, having people in and out is intrusive, you can’t win really can you? 

Here’s hoping for a quiet weekend for you all.

with love

Devonmaid xxxx

Posted 05 Apr 2019 at 22:23
Dear Kentish , I think Chris j and Devonmaid spoke for us all ,you are such an inspiration and stronger than you think.

Best wishes ,thinking of you and your family.


Posted 05 Apr 2019 at 22:49

I can totally echo the above comments. You are doing so well,I’m sure N will be very proud of you. Keep going xxx

Posted 06 Apr 2019 at 01:24

Oh, Kentish, everyone is right, you are doing a magnificent job.  Glad you had a quiet morning - coffee and listening to the kids getting ready sounds perfect.  And a night's sleep (at least for N, but did you keep waking and listening??).  And yes, I know why you feel the caring is part of who you are, and of who you and N are.  But I also know how hard it is.  The physical stuff is one thing - your comment about the slide sheet took me back - I never managed to do that on my own.  The mental stuff is another dimension entirely - the never ending worry about every decision.  Apart from the carers what other medical support do you have coming in - district/community nursing?  palliative nursing? sympathetic GP?  They can all make a difference in making you feel (at least temporarily) a little more in control.

I am sending my usual love, hugs, and am here with a sympathetic ear if you need one.  And I am wishing you more snippets of quality time with N at home, with the family.  Hold his hand as often as you can, and let that imprint on your brain.

I am doing OK - grown up granddaughter is with me until next week, and we are enjoying getting out and about.  Still numb, I think, and may fall into a hole after that.

Posted 06 Apr 2019 at 08:29
Wonderful wonderful wife. Thinking of you.Geoff
Posted 06 Apr 2019 at 10:00


You are one of our real troopers, even with all the issues you are dealing with you still give consideration to other members. Keep going gal.

Thanks Chris


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

Posted 06 Apr 2019 at 21:52
You are a brilliant Mum and wife and however bad everything must seem at times, you will treasure all those little moments of calm and having a bed where neighbours can be seen must bring some comfort to N - as if he is still part of the world outside.

I remember that we wrote to our son's school as he was doing gcse's at the same time as his grandfather died of pc. He coped and got pretty good results and the school were very supportive . Children do seem to cope although you always worry about them so much.

I can't tell you how much I admire the way you are coping with all of this - sending prayers for some good sleep to give you strength for each day. x

Posted 06 Apr 2019 at 22:11

I truly don’t know what to say other than you are doing an amazing job.  Take care and hopefully you will get to enjoy more days like this. 


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

Posted 09 Apr 2019 at 21:28
P.s Oh and there was me being all rude about our gp, the 2 doctors who run the practice are on holiday but the 3rd doctor (the one who sent N for a PSA test in the first place) rang me yesterday and asked if she could pop by after surgery to check in on us!!!

They had received the discharge letter from the hospice (not the month I thought it would take.....) and wanted to just see how things were going. I should not assume every person/department we come across will be inefficient, humble pie eaten.

Posted 09 Apr 2019 at 21:30

Don't know what to say Kentish.   Just sending hugs x

Posted 10 Apr 2019 at 10:15

Oh, Kentish.  So pleased you've had your peaceful week at home, with family time.  Hang onto the memories of this time.  And sad to hear that N's condition means that he needs to move back to the hospice.  While there will be more support there, it won't be as peaceful.  There is no right/easy answer is there? For my part, in hindsight, I am pleased that we did move H back into hospital - I'm glad that I am not looking around me at home with memories of that time, if that makes any sense.

I wish there was something I could do other than send love and hugs to you and the family.  Just know that you are in my thoughts each day.

Posted 10 Apr 2019 at 12:22

Originally Posted by: Online Community Member

I wish there was something I could do other than send love and hugs to you and the family.  Just know that you are in my thoughts each day.


I would second that, as I am sure many other people who don't post often will. It is hard to find the right words, just know there are many people out there sending love and wishing we could do more to help.

Posted 10 Apr 2019 at 16:14

Just one of the many others - sending you love and wishing you comfort and strength. xx

Posted 10 Apr 2019 at 16:27

Thinking of you and sending hugs.

Posted 10 Apr 2019 at 21:49
Thinking of you all and sending best wishes and prayers for the coming days. Hoping you will be able to get some rest and I am glad you had your peaceful time together at home.
Posted 10 Apr 2019 at 22:32
Thank you for your lovely thoughts. It was a smooth transition to the hospice from home this morning. We were all packed and just nattering over a sleeping N when the ambulance arrived. They treated him so gently and again we are so fortunate to only be 5 mins away.

We were unpacked in time for a spot of sweet and sour chicken from the kitchens for lunch. He only eats a tiny bit but enjoys it still, he swings between disorientated, fully conscious, very sleepy/fatigued and vacant. We watched the last episode of a TV series we had been following. That felt like a mammoth achievement to have got to the end! It's so hard to justify him being there when he is lucid and I wonder if we could have just manged a few days more. But this time is different, we had several people advising us that N would be able to be more comfortable if he returned to the hospice and we were able to do this in a calm and planned way, so different to our other experiences.

Going to try and get some sleep. It's hard to stay asleep when he's not here but I wouldn't sleep if I was with him anyway...

I had an opportunity before he came home to talk to family support about how I felt, we went through how sometimes the right thing is said at the wrong time, it's so easy to be hyper sensitive but that sometimes the professionals don't recognise this is how you are feeling in the moment.

I think I just don't want to be left with lingering regret, I need to feel in myself I did everything I could for N.


Posted 11 Apr 2019 at 00:13
You have and continue to do everything you can..
Posted 11 Apr 2019 at 21:17

Hello Kentish

i feel very sad that N has had to go back in but I guess the week at home will go down in the memory banks as a time of ease and love and homeliness and that’s a lot to be grateful for at a time like this. It feels from your post that the time is fast approaching when things are going to get worse and the advice from the professionals seems to point this way. You seem very accepting and I think from being here so long, that this is what happens. I hope I can be the same when the time comes, I’m very afraid of panic and scaring my girls. 

I think of you every day, even though I don’t always come in to the forum. You are so brave and a wonderful wife and mother. I hope your strength will carry you through.

with love

Devonmaid xxxx

Forum Jump  
©2021 Prostate Cancer UK