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User
Posted 13 Sep 2015 at 16:59
Hi haven't posted for a while but do follow conversations, my Husband has Advanced Prostate Cancer (see my profile). Enzalutamide has failed his PSA doubling time is 2 months, although his PSA has never been very high even though he is Gleason 10. He decided to have no further anti-cancer treatment in July 2015, he has got progressively worse over last few weeks, he is sleeping a lot of the time , has no energy and increasing back pain ( he had spinal cord compress May 14). I know we are heading towards the end game, but I would like to know what to expect, what happens next? No-one wants to tell me what to expect! I need to know, that is my personality. When I know what to expect I can deal with it, it is the unknown I find hard to cope with. Hope someone can help me.
User
Posted 05 Dec 2015 at 17:02
It is with great sadness I have to post that my darling husband Stephen died on 4th December at home in a circle of love from his family. Stephen had maintained a positive attitude till the end , his passing was dignified and peaceful. I will miss him every moment of every day. Best wishes to all who are connected with this awful illness.
User
Posted 08 Oct 2015 at 20:28

I am not sure that's a fair representation of the responses Dave. The replies above certainly don't read to me as generalised or sanitised. And like others such as Mo and Zarissa, I have posted quite openly on the forum in the past that in my experience, a pain-free end is not always achievable and yet we (society) set people up to believe it can all be managed and neat and tidy. It can't. Some people fall into a deep sleep over a period of time and then slip gently away, surrounded by calm and love. Others are ripped away from us in great pain and to the distress of everyone involved.

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

User
Posted 07 Oct 2015 at 10:11

Hi Hedgehog

 

I had a similar experience to you in that I asked on the forum what the process of dying from pc was. And like you, I got quite generalised responses with quite confident messages that the pain could be controlled and the death could be a slow slipping away.

 

Except from one person whose husband had just died and who emailed me privately. And she was hurting. And so had he. She described the sordid details: incontinence; spoon feeding a tiny amount of icecream only for her husband to vomit, being bed ridden, with hugely swollen legs from the steroids and other drugs; constant nursing; constant discomfort.

 

I've no way of knowing how common her experience is. But I do have the feeling that, while treatment has improved greatly and life expectancy has multiplied, by the time you get to the final stages it is less than pleasant. I do hope that I have not made it any harder for you and that my interpretation of your letter was right.

 

All the best

 

Dave

 

 

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User
Posted 13 Sep 2015 at 18:35

Hi Hedgehog, sorry that you find yourself in this situation it must be so frustrating for you both.

Unfortunately I cannot help you with any information but I am sure someone will get back to you with something that will help.

I feel for you both and wish you all the best with whatever is thrown at you, stay positive and keep talking. Have you not tried to find information from the specialist nurses or oncologist that has been seeing you?

Maybe try phoning the support nurses on this site to get some help/information, it is worth a go..

Regards Chris/Woody

Life seems different from upside down, take another viewpoint

User
Posted 13 Sep 2015 at 21:19
Hi hedgehog,

Am really sorry to hear to hear of your situation. This is going to be a very difficult time for you as you see your husbands energies gradually diminishing. It can be made into a very special time if you have the right support and medication. Your husband should not be getting increased back pain, there are many means for him to recieve pain relief.

I suggest getting your gp on board and he in turn he can refer you to the mcmillan nurses. The mcmillan nurses will support you and your family with psychological as well as practical help. You will need to consider whether you wish to look after your husband at home/hospice/hospital.

We cared for my dad at home for as long as we could then his final couple of days were in hospice care. We could not fault the care he received at the hospice and he ended his days very peacefully.

I do hope you get the support and advice you need at this difficult time.

Lesley x

User
Posted 13 Sep 2015 at 22:19
Hi Hedgehog

I'm so sorry that you are going through this and that no one is being up front with you about what happens. It might be that it's unpredictable and that they simply can't say in your case. In my experience of my parents passing they became increasingly very quiet and peaceful in their last days and we simply spent all our time chatting about them and our family memories whilst keeping vigil, as they say the hearing is the last thing to go. I think it's true judging by the reaction of my unconscious mum as I was silently sobbing over her and she somehow put out a hand up to wipe my tears, I'll never forget it.

I think that the amount of pain relief given in the last days does tend to cause this quietness as the person sleeps more and more, along with the inability (often) to eat or drink. Some people rally before the end, we have seen this several times on this site reported by family and witnessed by at least one of our most loved forum members who continued to post until almost the end.

Can you speak to your GP about this as I would expect that care will be handed back to the GP at some point unless your loved one is admitted to the hospital or hospice.

I'm sure others who have experienced this first hand with Pca will comment soon, as many of us fully understand your need to know and be prepared.

Much love

Allison

User
Posted 14 Sep 2015 at 03:05
Hedgehog

This is a really tough time for you. The end of life progression is not the same for everyone there are many variations on the same theme.

My husband was non responsive to treatments and also suffered two SCCs but he had an amazing outlook on both living and dying.

There are several threads I wrote in the weeks amd months up to his death.

Mick's day of reckoning , Elephants and their part in a dignified death and finally Starting over. Read any or all of them. If you need someone to chat with and for some individual support private message me and I will be there for you.

Best wishes

Xx

Mo

User
Posted 14 Sep 2015 at 08:01

morning

sorry to read all this, hope you find the answers you are looking, we all know this site will give as much help as everyone can, the McMillan nurses seem a very good way to go

nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 14 Sep 2015 at 15:21

Hello Hedgehog. I am very sad for you. As has already been said, end of life experiences can be different for each of us.

I do know that when my young (43) niece was passing we sat round her bed at the hospice. She appeared to be unconscious but as we reminisced about family and  referred to her childhood she would occasionally smile as if she was enjoying the jokes so I am sure that mentally she was still with us. S

he died 24 hours later.

I hope your time left with your other half can be peaceful and pain free for him.

Sandra

Edited by member 07 Oct 2015 at 16:05  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 14 Sep 2015 at 15:23
Apologies for mistakes in my post. Have no home WiFi and struggling with new phone too. Best wishes hedgehog. Sandra
We can't control the winds - but we can adjust our sails
User
Posted 14 Sep 2015 at 17:38

Thinking of you at this uncertain time. Neil deteriorated and died very rapidly in the end, though all planning was around him coming home from hospital. This is such an unpredictable disease. We had the hospice nurses involved for only the last few weeks but they were brilliant and the only ones who I felt could have those difficult but frank conversations with us both about what the future might hold. They also gave me a lot of psychological support and were happy for me to contact them which wasnt the same with the medical team who looked at the situation differently. Everyone deals with the possibility of impendng death differently. I remember telling Neil how much I loved him loads of times , we had very little time ultimately to talk to each other and I think things progressed so fast he didnt know what had hit him. I have to say, that at the end, it was almost a relief he had died, I could not have wished on anyone continuing to live with all the complications he had and the loss of dignity. As others have commented, pain relief is very important, ideally discussed beforehand with the palliative care service. I send you my heartfelt regards, I know it is not easy to face this and in this circumstance,

 

Fiona. x

Edited by member 14 Sep 2015 at 17:39  | Reason: Not specified

User
Posted 19 Sep 2015 at 11:47
Hi I would like to thank all of you who have taken time to reply. McMillan nurse and GP have been very good this week my OH has had a chest infection and is anaemic this has contributed to him feeling so poorly, he has picked up with antibiotics etc . Have spoken with our nurse and she has answered my questions so feeling a bit calmer. Hoping to get away for a few days break next week if he feels up to it. Thanks again for all your comments it is very comforting to know we are not alone.
User
Posted 19 Sep 2015 at 12:39

Hi just to say hi this is a stressful time I feel for you I know what I'm going throu it's so unfair it makes me angry as well in this day and age I'm 49 and feel my world is being crushed but for our oh we must be strong hope you get away for your break we have a caravan 4 day break next week so I'm hoping all is well it will do my our oh good and us xx😉

User
Posted 19 Sep 2015 at 13:59
Hi

It's reassuring to be able to see a reason for your husband feeling more poorly that isn't related to his cancer, and its good to see he's responded well to the antibiotics.

Hope he feels up to some quality time away with you. There's some beautiful sunshine over the country this afternoon so we're off for a short walk to the park.

Take care,

Lesley x

User
Posted 07 Oct 2015 at 10:11

Hi Hedgehog

 

I had a similar experience to you in that I asked on the forum what the process of dying from pc was. And like you, I got quite generalised responses with quite confident messages that the pain could be controlled and the death could be a slow slipping away.

 

Except from one person whose husband had just died and who emailed me privately. And she was hurting. And so had he. She described the sordid details: incontinence; spoon feeding a tiny amount of icecream only for her husband to vomit, being bed ridden, with hugely swollen legs from the steroids and other drugs; constant nursing; constant discomfort.

 

I've no way of knowing how common her experience is. But I do have the feeling that, while treatment has improved greatly and life expectancy has multiplied, by the time you get to the final stages it is less than pleasant. I do hope that I have not made it any harder for you and that my interpretation of your letter was right.

 

All the best

 

Dave

 

 

User
Posted 08 Oct 2015 at 20:28

I am not sure that's a fair representation of the responses Dave. The replies above certainly don't read to me as generalised or sanitised. And like others such as Mo and Zarissa, I have posted quite openly on the forum in the past that in my experience, a pain-free end is not always achievable and yet we (society) set people up to believe it can all be managed and neat and tidy. It can't. Some people fall into a deep sleep over a period of time and then slip gently away, surrounded by calm and love. Others are ripped away from us in great pain and to the distress of everyone involved.

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

User
Posted 09 Oct 2015 at 07:28

Dear hedgehog
I will post more soon when I feel able, I have just lost my gorgeous husband and he was as dignified in passing as he was in living. His last hours were settled and quiet. Unfortunately Lynn is right some maybe not so but I hope and pray for you it will be a calm loving experience as ours was. If you wish you can private message me. Love joy x

User
Posted 09 Oct 2015 at 07:46

Condolences on your loss Joy.

So glad that you, at least, experienced a peaceful, dignified passing.

My thoughts are with you, and all of those among us who are at this end stage point.

We can't control the winds - but we can adjust our sails
User
Posted 05 Dec 2015 at 17:02
It is with great sadness I have to post that my darling husband Stephen died on 4th December at home in a circle of love from his family. Stephen had maintained a positive attitude till the end , his passing was dignified and peaceful. I will miss him every moment of every day. Best wishes to all who are connected with this awful illness.
User
Posted 05 Dec 2015 at 17:26

Hi Hedgehog
Please accept my deepest condolences on your loss. I to am on the same journey and after reading your posts I have a better view of what's in store. I will take comfort from your story.
Best wishes for the future
RichardK

Jackdusty@C
User
Posted 05 Dec 2015 at 17:32

Hedgehog

So very sorry to read your sad news.

Please accept my sincere condolences to you and your family at what must be a most distressing time for you all.

Luther 


User
Posted 05 Dec 2015 at 18:02
Hi Hedgehog

I am so sorry to hear of the death of your husband. Please accept my sincerest condolences.

Sending you my best wishes at this very sad time.

User
Posted 05 Dec 2015 at 18:32

Deepest condolences to you on your husbands passing Andy

User
Posted 05 Dec 2015 at 19:03

I am so sorry to read that this awful disease has taken another good man. My love and thoughts are with you and your family xxxx

User
Posted 05 Dec 2015 at 19:59

So sorry to hear of your loss, you are in our thoughts.

thanks chris

User
Posted 05 Dec 2015 at 20:01

So very awful for you. We send you and your family strength and love at this time.
Chris and El x

User
Posted 05 Dec 2015 at 20:41
Hedgehog, my deepest sympathy to you someone I can,t remember who once said when one of us bleeds we all bleed. Take a little part of all of our hearts to comfort you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 Dec 2015 at 20:49

Heatfelt sympathy from me too Hedgehog.

Wishing you peace, strength and love in the coming weeks and months

We can't control the winds - but we can adjust our sails
User
Posted 05 Dec 2015 at 21:44

Hi Hedgehog,

My love and condolences to you. We have lost far too many good men known to this community over the last months. If there is anything we can do as a  forum to continue to support you, do feel free to ask,

 

Fiona. xx

User
Posted 05 Dec 2015 at 22:37
Hi hedgehog

I'm so sorry to hear of your sad loss though it's lovely to hear he was surrounded by his loving family and had a very peaceful end.

All my love and sincere thoughts to you.

Lesley xx

User
Posted 05 Dec 2015 at 22:43
It's so sad

Blessings, Arthur

User
Posted 05 Dec 2015 at 23:03

BIG BIG hugs x

User
Posted 06 Dec 2015 at 00:11

Dear Hedgehog
I'm so sorry to hear of your loss and offer my condolences.
Life is so cruel sometimes.

Paul

User
Posted 06 Dec 2015 at 01:07

My condolences too. You will have memories of the good times to cherish.

Barry
User
Posted 06 Dec 2015 at 06:43

hi hedgehog

BIG hugs from me too, condolences to you and your family

regards

nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 06 Dec 2015 at 09:17
Hi,

I'm so sorry to hear of your sad loss. Nothing I can write will take away the hurt but wanted you to know we're all here for you.

Steve xx

User
Posted 06 Dec 2015 at 10:22

It is awful to have to watch a loved one suffer with this disease. Thoughts are with you and your family. Grieve how you want to - there is no right or wrong way - only yours.

Paul

Stay Calm And Carry On.
User
Posted 06 Dec 2015 at 17:12

I'm so sorry. My thoughts are with you.

 

David

User
Posted 06 Dec 2015 at 18:21

My condolences to you Hedgehog, so sorry to hear your news. You will have lots of good memories to keep with you forever filled with love and happiness. Stay positive through the hard times I am sure there is light there somewhere.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 10 Dec 2015 at 20:08
My sincere condolences Hedgehog, I think you are dignified in the way you have dealt with everything this illness throws at us. I'm grateful to hear that your husband's passing was, in the end, calm. I've been with a few family members at this time and it has always been that way for us.

With love

Allison xxxx

User
Posted 10 Dec 2015 at 22:18

I don't know how but missed this, Hedgehog. I am so very, very sorry but thankful that he was in safe and loving arms.

Take care of yourself as you start to sort everything out - it can be extremely draining.

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

User
Posted 10 Dec 2015 at 22:28
Thinking of you and your family hedgehog xx
User
Posted 11 Dec 2015 at 14:48

Tina, I've posted Stephen on Absent Friends5, what more can one say but stay strong and remember, no one can take your memories away.

I missed your earlier post as I don't tend to look at the site so often now, sorry.

God Bless,

Chris.

User
Posted 11 Dec 2015 at 16:58
Tina

Like Lyn I have no idea how missed this post, I had been thinking of you. My sincere condolences for you and your family.

Xxx

Mo

User
Posted 11 Dec 2015 at 22:22

Dear hedgehog
Thoughts are with you stay strong one day at a time,
Regards sue x

 
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