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Nearing the end ?

User
Posted 06 Sep 2014 at 09:38

Thought I'd start this under a new thread. Neil's new stents which we'd chased up so much fell out within two days so his kidney function is very poor again. Yesterday the ward were monitoring his blood pressure, general obs and he was on a drip for fluids. He was sort of bemused but quite chatty about the football, radio and so on. I dont think he knows if he's coming or going.


I spoke to the registrar who said the radiology dept didnt want to change the stents yesterday so the plan is to observe him and particularly kidney function over the weekend. They will probably try to put in new stents on Monday this time through his back. Last Tuesday they went in through the supra pubic catheter incision. It is possible they wont be able to do this for all sorts of reasons and the registrar explained to both of us that the situation was critical. We may be soon making decisions about how feasible is it to continue with all these procedures.


We had some difficult sessions last week with the palliative OT about where Neil wanted to live after discharge but he amazingly decided he would like to come home and live downstairs which he was utterly against a while back.


I have been organising decorating the living room which needs a facelift but then so do I, the way I look nowadays !


Of course, with the latest development anything is possible. Part of me wants him to fade away in hospital but my heart is breaking. Luckily I have Dave, Neil's step bro helping me with sorting, clearing at home, in itself a daunting task but plenty of goods for the cancer charity shops !


So that's it for now. I am carpet tiling the hall, whatever happens I am determined to do all these wretched jobs I've promised myself I'd do for years  !


 


Fiona.


 

User
Posted 17 Sep 2014 at 20:55

Fiona,


Greif is a never ending wheel, just when you think it has stopped it starts all over again. I love the idea of the plaque for Neil, it will be there for everyone who passes to see.


When you are ready you will be able to stop being busy and reflect on the good times when there was laughter and fun a time before PCA.


Take care and let us all know how you are getting on.


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 07 Sep 2014 at 13:45
Fiona
From what you say it does sound like things are getting to that point we all dread. I'm glad you are over the hump about the downstairs, I'm not sure about Neil's mindset but maybe something has clicked in him.

Well done for doing the preparation for his return home, it gives you something to focus on at a very difficult time. In some ways knowing that it is finite may help you to keep things together, though it must continue to be very hard for you.

My heart goes out to you, you have had such a raw deal, both of you.

Sending my love
Allison xxx
User
Posted 07 Sep 2014 at 13:56

Thinking of you Fiona.



Hope you got that hall finished!!  

Edited by member 07 Sep 2014 at 13:57  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 08 Sep 2014 at 09:35

Sorry to read this and after all that you have both been through. Don't forget to factor in some "you time" and don't feel guilty about that. Good that you have family support.

Dave

User
Posted 08 Sep 2014 at 14:06

Thinking of you Fiona at this dreadfully difficult time.

You are doing your best and coping your way and that is all you can do.

Alison x

User
Posted 08 Sep 2014 at 15:23

I have finished carpeting the hall and am having the front room re-decorated so if Neil does come home it is ready for him, it's needed doing for ages but being with and doing things with him just seemed so much more important. Gives me something to direct my anxieties into though I have been a bit manic sorting, decorating and so on. Didn't know I could be so motivated.


Have seen Neil daily. He was taken off the IV drip over the weekend, the docs just want to see how he was with oral fluids and his basic obs have been ok. This all won't help the OT and Physios trying to assess and get him as mobile as possible. They will attempt to re-do his stents today or tomorrow, this time through the back, dont know why they didnt do that last week as it worked with first pair of stents. He may have to have nephrostomy bags for a few days which he's always been dead against but was ok about that this morning. I guess if it's in a hospital setting it's ok unlike the thought of coming home like that. Of course anything could happen. I dread getting a call from the hospital to say he has deteriorated, hard to block it all out. At least I have now had a few nights reasonable sleep which has been in short supply for ages !


 


Fiona.

User
Posted 08 Sep 2014 at 21:27
Zarissa

Having read your recent posts and profile it makes me realise how lucky some of us are to go from diagnosis to "cure" in just a few months and still have the option of further treatment if required. It is hard to watch a loved one suffer but you have done all you can to care for and help Neil. Remember to look after yourself and our thoughts are with you.

Thanks Chris
User
Posted 08 Sep 2014 at 21:50

Hi Fiona, sorry to hear that things have moved on so fast. It is good you have something to focus on, but don't burn yourself out at the same time. Look after yourself.


 


God bless


Lorraine x

User
Posted 10 Sep 2014 at 11:47

My darling Neil died this morning in hospital.


He had his stents replaced yesterday and when I finally caught up with a ward doctor I was advised to come into the ward, Neil had been vomiting blood and they were planning an endoscopy the following morning. I saw him and he had really deteriorated, he was agitated and in discomfort . His daughter and her partner came up from Devon as I felt things were serious.


We spent a night at the hospital trying to get Neil good palliative care. There were only five staff and junior doctors , who had limited experience . We had to insist he had proper pain control and that they discontinue transfusing blood as he had a gastric bleed and it was clear this was an end of life scenario. Yes, the usual fighting for everything. At one point he stared at me and commented 'What a lovely pair of breasts '. You really can't keep a good man down !


We went out of his room for the nurse to clean him and change his sheets then we were quickly called back and he died soon after. I was able to hold his hand continuously and tell him how much I loved him and all he meant to me, interspersed with chasing up staff to hurry up with pain control and demanding that on call medics were paged. The story of our experiences all along.


The stress is gone but I have the reality of learning to cope without my lovely man, I am utterly distraught. Apart from the cloud the illness cast on our relationship, I absolutely adored him, we were so good for each other as his step brother and daughter have reminded me over and over in the last twelve hours.


One day, I hope I will be able to hold his hand forever !


 


Fiona.

User
Posted 10 Sep 2014 at 12:33
Fiona
I am so sorry to hear that your beloved Neil has lost his battle too, my heartfelt sympathy is for you right now. It is such a horrid fight the many trials you have been put through may now be over but that does little to ease your pain. You were there with him and battling away against all the odds right up to the end. I know at times the crap that this illness hands out to us as partners has been frustrating for you because of Neil's ambivalence and also due to the sometimes outrageous lack of support you were given by the medical team.Through it all you stood by him and battled for him and even if he did not always show it that would have meant the world to him.
You have never been afraid to express your feelings and have been remarkably candid on this forum which just goes to show that you are an amazingly strong Woman.

I am thinking of you lots of hugs
xx
Mo
User
Posted 10 Sep 2014 at 14:01

Dear Fiona,


 


My wife and I are so so sorry to hear about your tragic loss.


Our hearts,  thoughts and prayers are with you.


 


We have witnessed your long journey and the awful experiences you related here, and as Mo has said, you seem to be a remarkable, strong woman. You have had to be after some of the terrible treatment you've both received.


 


May your strength see you through these dark days, and may you find peace and comfort soon.


 


Rest In Peace Neil.


 


 


George and Lynn


 


 

Edited by member 10 Sep 2014 at 14:02  | Reason: Not specified

User
Posted 10 Sep 2014 at 14:27

God bless you Fiona.

Thinking of you and wishing you strength.

Alison x

User
Posted 10 Sep 2014 at 16:03

Sorry to hear this sad news Fiona. You have battled hard for Neil, in the face of everyone sometimes including Neil's own resistance but you have stood firm and given Neil your best shot. He can rest in peace now the suffering is over. Thinking of you at this difficult time. RIP Neil.

User
Posted 10 Sep 2014 at 18:19

Fiona,


You have fought so hard throughout Neil's illness and I am so very sorry to have read your news this morning. My heart goes out to you, as Mo has said you have been very honest in your postings about how difficult things have been.


You are a strong person and that has shone through in your postings, this strength will carry you into the future.


My thoughts are with you.


RIP Neil, another good man lost.


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Sep 2014 at 18:21

My heart felt condolences Fiona


 


flexi

User
Posted 10 Sep 2014 at 19:15
Dear Fiona

I am so sorry to hear your news, you fought so hard for your man, even when times were hard, Neil went through so much, as did you, but remember the good times, not the bad.R.I.P Neil.

Roy
User
Posted 10 Sep 2014 at 19:29

I am saddened to read this but, at least Neil has some peace and is free from pain.

Good for both of you that you were there.

Dave

User
Posted 10 Sep 2014 at 19:32
Fiona

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

Thanks Chris



User
Posted 10 Sep 2014 at 22:14
Oh. Fiona
I am so sorry and am shocked to the core.

You have had a terrible experience from start to finish and I can only thank heaven that Neil had you by his side. It could have been even worse without you to stand up for him, it doesn't bear thinking about.

Fiona, I am heartbroken for you. The only comfort is that Neil is out of pain. I wonder if he knew somehow as his attitude had changed a lot in very recent days.

We have lost three of our men here in recent days, Barry Newman, Peter Wilsher and now Neil. Rest in Pece Neil and I hope you are having a pint with our lovely forum members, it makes me happy to think that.

Much love to you Fiona.

Love Allison. Xxxx
User
Posted 10 Sep 2014 at 22:56

You and Neil have been through some terrible times but there are still fantastic memories before his illness took hold. No-one could have criticised you for walking away, but despite all the difficulties you stuck by your man. There will be relief and sorrow in equal measure. I hope you are able to withstand all the emotions you are feeling and eventually get on with the rest of your life looking back with pride at how you helped your man.

Paul

Stay Calm And Carry On.
User
Posted 10 Sep 2014 at 23:06

Fiona,


We are so very sorry for you, you have been through a lot, and always appeared strong in your postings, be strong now as Neil goes up-stairs to join all the previous fallen, he is not now in pain, which is in itself a blessing.   


 


Our sincere condolences to you, your family and friends,  I will be adding his name to Absent Friends using the surname on your profile.


 


God Bless and keep strong.


 


Chris and Shirley

User
Posted 10 Sep 2014 at 23:22

My sincere condolences on your loss Fiona. Neil knew he was much loved and you did all you could right to the end. Remember him as he was and the good times you had before this rotten disease took hold.

Barry
User
Posted 11 Sep 2014 at 00:58

RIP Neil http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif Take care and be strong Fiona .

User
Posted 11 Sep 2014 at 09:58
Sincere condolences on your loss Fiona. Rest in peace Neil & God bless.xx

Carl & Andrea

Life's a Marathon. Run in peace.
User
Posted 11 Sep 2014 at 12:29

Our sincere condolences Fiona.


 


 


I seem to have given sincere condolences quite a lot just lately,


 


Steve

User
Posted 11 Sep 2014 at 15:25
Fiona and family
sorry to hear of your sad loss.
Niel is now out of pain.
R.I.P. Niel
Will be thinking of you
Carol


Steve read your post and I feel the same
If you look at the posts there has been one good man taken every month from this site alone
Carol
User
Posted 11 Sep 2014 at 15:25

Fiona

Sorry to hear the sad news about Neil, Sincere condolences.

Alan

User
Posted 11 Sep 2014 at 21:04
So sorry to hear your sad news Fiona. You really couldn't have done more for Neil. It must all seem so surreal for you and you must feel there is no purpose left. You must be exhausted and after the flurry of what has to be done now you will need to be gentle with yourself as your mind and body starts to heal. Take care, Janet
User
Posted 11 Sep 2014 at 22:01

It is shocking that even at the end, you had to fight to get Neil any kind of comfort and dignity. I am so angry for you and for his daughter that you had to think of practical matters when all you really wanted to do was give him all your attention. If it is any consolation, I have been told many times now that nature has its own way of dealing with pain at the end of life; that although the body may writhe or appear to be in discomfort, the brain has a way of shutting this down so that the person is not suffering.

You are in my thoughts Fiona. Sleep peacefully Neil.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Sep 2014 at 22:36

I have not been on the site for a few days and was shocked to read of Neils passing. I am so sorry Fiona. You were so strong throughout his illness and I know that I empathased with a lot of your feelings. God bless. Stay strong.xx

Max
"You can only play the hand you're dealt"
User
Posted 14 Sep 2014 at 16:15

Thank you for all your messages. I miss him so much. I have times I sort of feel ok then it all starts off again. The local dog walkers clubbed together to buy me a planter full of flowers and card, I've had no end of cards and messages, so kind but of course it doesnt change what has happened. Neil was adamant he didn't want a funeral, just like him, and of course I respect his wishes. He was utterly unique. Think I will have a plaque put on Clevedon Pier in his memory which I've done for my parents and my dogs. We both loved the coast and Victorian architecture so seems very fitting and easy for me to visit.


So thankful to his daughter who sat back while he died and let me hold his hand and talk to him. The front room is nearly finished, last thing he knew I was going to do for him. Walls a lovely butter-like colour, white skirtings and door so if he had come home it would have been to this. I have been laying carpet tiles furiously the last few days, no, I can't stop, I have been like that the last twenty months, hope I will eventually be able to rest.


Despite the distress in many of my posts, I loved Neil to bits, it was awful how the illness skewed our relationship and I had thoughts and feelings I would not have otherwise had. He knew how much I loved him and vice versa through it all. I have lots of texts on my phone telling me how much he loved me, I will treasure them. Whatever happens, I will always be his girl ! He was just 63.


I can't get over how lacking the treatment is for this damn disease ! I may go along to the new Macmillan centre at hospital where Neil died in a few weeks, spoke to one of the counsellors who was lovely and said come for a cup of tea and a chat. Don't want to exhaust friends with my grief.


Regards to you all, lets hope there are better times over the horizon for newly diagnosed men and more understanding of the stresses on their families.


 


Fiona. x

User
Posted 15 Sep 2014 at 07:23

You are right Fiona. The stress on the wife/family is at times as unbearable as it is for the man. This disease changes everything.


Neil was so lucky to have you in his corner.


As you say - lets hope the future brings better treatments for men and better help for them and their families.


Alison x

User
Posted 16 Sep 2014 at 22:16

Fiona, I am so deeply sorry to see this news. You and Neil fought a really brave battle and it was horrendous what you had to go through. I hope you take comfort from all the memories from your good times together before this horrible disease took over.


 


Thoughts and prayers are with you


 


Lorraine xxx

User
Posted 17 Sep 2014 at 00:38

Fiona, I'm so very sorry to have just read the terribly sad news about Neil.
The plaque overlooking the sea sounds like a beautiful idea.
Thinking of you

Cat x

User
Posted 17 Sep 2014 at 20:26

My condolences Fiona.


The pier is a lovely place to remember loved ones.

User
Posted 17 Sep 2014 at 20:55

Fiona,


Greif is a never ending wheel, just when you think it has stopped it starts all over again. I love the idea of the plaque for Neil, it will be there for everyone who passes to see.


When you are ready you will be able to stop being busy and reflect on the good times when there was laughter and fun a time before PCA.


Take care and let us all know how you are getting on.


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
 
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