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Radium 223 - the highs and the lows

User
Posted 22 November 2017 20:09:33(UTC)

Dearest Linda
My heart is breaking for you David was one of the first to respond to my outpourings when my husband died in July. He is such a kind caring man who brought lots of no nonsense information, humour and great musical introductions that will stay on my play list forever more and will always remind me of him. IT sounds strange to write that because of course we never met but I feel so close to people on this site and especially you right now. It's funny how we all become so close to this family of people who wish they didn't have to be part of it.
Sending you both much love and huge hugs
Yvonne

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User
Posted 22 November 2017 20:39:35(UTC)

Sending a virtual hug.. like Yvonne said we haven't met but I have followed Davids wonderful postings and appreciate his sharing, his humour and his education of others.

Big hug xx

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User
Posted 23 November 2017 03:15:05(UTC)
Thinking of you both at this difficult time.

Steve xx
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User
Posted 23 November 2017 07:49:59(UTC)
Dear Linda
I would also like to echo everybody’s lovely comments by saying David also encouraged me to read into his thread on enzalutamide when my dad was starting to be treated with it,David is a wonderful man who’s helped so many on here,I just want to say I am thinking of you both.
Much love Viv xx
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User
Posted 23 November 2017 09:31:57(UTC)

I am so sorry to hear this latest news. It sounds very similar to what happened with my David.

My thoughts are with you both

Rosy xx

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User
Posted 23 November 2017 12:53:18(UTC)

Hope that David continues calm and pain-free today Linda, and very much hope that a hospice bed is available before long. Please send him my love and thanks for all the support and kindness he showed to me. Not to mention the chuckles. He's clearly a very special man.

LOve

Ruth xxx

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User
Posted 23 November 2017 16:36:53(UTC)

Just sending love xx

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User
Posted 23 November 2017 18:20:30(UTC)
Thinking of you both at this difficult sad time,sending lots of love, david is such an inspiration to everyone as are you both for sharing your journey and helping others.love jo.xx
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User
Posted 23 November 2017 21:09:35(UTC)
I am so very sorry to hear this and will be praying for you both and hoping David stays pain free and comfortable xxx
Debbie xxx
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User
Posted 23 November 2017 22:23:02(UTC)

Been away for a day and come back to see the news we all fear, however inevitable it is at some poin. I really hope they can make him comfortable, into a hospice if poss and you get time to share together. Give him my best, and look after yourself too. Thinking of you both.

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User
Posted 25 November 2017 17:32:51(UTC)

I'm making this post because I think David would want me to be as honest about what's happening as he has in the past in order to inform and possibly help others.

David is deteriorating. He’s not eating anything except ice cream and he’s not drinking as much. I was wrong before – he hadn’t been catheterised. He’d had a small plastic covering placed over his penis, connected to a tube and bag to collect urine. Less invasive than catheterisation but they can only keep it on for 24 hours before it starts to affect the skin, causing the skin to breakdown and slough off. Not good. So that’s been removed and urine is either collected in the usual bottle, if they are there in time, or the sheets gets wet and have to be changed, although not so much now as he’s not taking so many fluids. The (very pragmatic) nurse told me that in her opinion, although catheterisation carries the risk of urinary infection, at times like this (what she meant was when someone doesn’t have much time left) she felt it would be preferable in order to avoid the disturbance (to the patient not the staff) caused by the sheet changing.

He’s also been taken off the humidified oxygen and put on the normal supply. They did this because the hospice cannot provide a humidified supply and they wanted to see if he could cope without it. He can, so there’s still hope that he could be moved to the hospice if a bed becomes available. The same nurse admitted that they did not have the staff on the ward to provide the level of care (turning him regularly etc) that would be ideal and that he would be better looked after in the hospice. So we can only hope.

I feel helpless – I try to be there at lunch time so that I can help him eat, but he doesn’t want anything except the ice cream and gets distressed if pushed to eat or drink more. He’s sleeping a lot and is a bit confused when he wakes but has moments when things are clearer.

Having said all that, I believe he is being kept generally pain free. They seem most attentive in this area, always checking that he is comfortable.

User
Posted 25 November 2017 18:11:36(UTC)
So sorry to hear this. Pain free is a positive. Hope he continues to remain as comfortable as possible. Look after yourself too. I'm thinking of you both
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User
Posted 25 November 2017 18:22:55(UTC)
I echo what scabbycat has posted. Thinking of you both, Ian.
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User
Posted 25 November 2017 18:39:17(UTC)
Hoping that a bed in the hospice becomes available, thinking of you
Regards Judi
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User
Posted 25 November 2017 19:36:32(UTC)

Hi Linda

Thank you so much for updating us - I know that so many people on this forum have been helped by David and will all be thinking of you and sending love - as do I.

I understand the feeling of helplessness but simply being there and loving him - as you have all along - is being useful. That's all there is at the end of the day, and it's a huge 'all'.

Love

Ruth xxx

PS Because I absolutely needed to do something sort-of practical, during the last week of Tony's life I would freshen him up with scented wetwipes and eau de cologne (a blokey smelling one of course!) and give him gentle head massages and witter sweet nothings at him as he slept. Don't know if he thought it was a good idea but it helped me (and still helps me) to feel I was physically caring for him.

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User
Posted 25 November 2017 20:57:20(UTC)

Thank you Ruth.
That's really helpful.
One suggestion I would make to any couple on this very rocky journey that we find ourselves on - from the right at the beginning when you get the diagnosis, through all the treatments to the end. There are so many choices and so many decisions to make. Sometimes it's very difficult to communicate - the emotions get in the way and the words don't come right because you dissolve into tears. Or because you feel you are treading on eggshells and are frightened of being misunderstood.

So write it down - a love letter if you like. Spend time crafting it so it says exactly what you want it to say and then give it to your partner. So there are no misunderstandings. Not all the time - just when you feel it's really important. David and I have done this just a couple of times during the last 3 or 4 years and when we have it has been so helpful to us both.

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User
Posted 25 November 2017 21:21:17(UTC)

Wonderful idea Linda! Wish we'd done that... we had lots of loving conversations and sent each other cards for no reason. But you are right - emotion gets in the way. A letter would have been something to really treasure.

Just from the way you two speak about each other on the forum it's clear that you have a fabulous relationship. We are both so lucky in spite of everything.

Love

Ruth xxx

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User
Posted 25 November 2017 21:28:46(UTC)

Just sending my love to you both.

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User
Posted 26 November 2017 00:03:23(UTC)
I really can’t believe this, it only seems a little while ago we were talking about real ale, music etc. I remember when when had a laugh about David’s name - some called him Colin re his avatar. I remember writing to him saying was his name Colin or Chester (I’m from Essex) - he got it!

I’m so sorry to hear this latest situation, David was such a support and encouragement to so many of us.

Arthur
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User
Posted 26 November 2017 07:12:13(UTC)
Oh Linda, i am so sorry to hear this latest news.

David always said that quality of life was most important to him.

I hope his care improves to allow that to happen

Regards and best wishes

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
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User
Posted 26 November 2017 16:01:51(UTC)

I think I need your advice here people.
What do you do when the person you love is confused and that confusion is causing that person to be worried/agitated. Do you play along with the fantasy or try gently to steer the person back to reality?

You may or may not know that David was a Project Manager during his working life. We both were. What's happening is that, lying in his hospital bed, he seems to have put on his Project Manager hat. One of the things you do as a Project Manager is to make sure that everyone in the team knows their role and responsibilities. David seems to be observing what's going on around him and trying to work out what his role is, what my role is and what the role of the nurses is. I've tried to tell him that his role is to be cared for and the nurses' role is to care for him and my job is to try make sure that he's comfortable and not worried. But it doesn't seems to be working. Any advice?

Linda

User
Posted 26 November 2017 17:33:05(UTC)

Dear Linda

So hard for you. Hope you have some support from somewhere too...

Your response seems like a good one (at least in theory). This might not be relevant but there's a wonderfully humane approach being used in dementia care homes when residents slip back to a previous life - thinking they are young mums, or that their parents are still alive. The staff are trained to thoroughly enter the resident's world and to go along with them rather than disputing their reality. The outcome is that the residents feel calmer and in control rather than getting even more confused and agitated.

But it sounds as if you have been doing that within the hospital context to no avail - maybe part of the problem is that 'being cared for' is not an active role - it's being done to rather than doing. I don't know if's there anything that you can suggest to him that he would be able to do, however minor? Has he stopped listening to music? Might he be interested in finalising his top 10s or deciding on the relative merits of one version of a song over another? When Tony was becoming more confused and agitated he did manage to surprise us all with a long and complicated discussion about several versions of Bach's piano suite (he discovered that the consultant loved Bach) and was clearly very contented with his conclusions.

It seems that confusion and agitation are often caused by the large amounts of medication that people receive once they are on a palliative care route. Plus, as they drink and eat less and the body begins to shut down it is less able to get rid of toxins. Apparently that can lead to agitation and confusion too so it's probably hitting your lovely bloke from all sides. Probably worth getting advice from the palliative care team - ours drastically reduced some of the medication which did lessen the confusion for a while. And eventually, at Tony's request, they massively increased the anti-agitation medicines so that he simply slept. So hard, especially for you.

Wishing you strength. Much love

Ruth xxx

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User
Posted 26 November 2017 17:38:15(UTC)

Something to talk to the palliative care nurse about if you get chance but in your situation I went along with it because it caused more distress and agitation to try to correct them. It will perhaps not last very long. What may be harder for you is if he starts to see people that aren't there; don't be frightened by this, it is very common.

I am thinking of you both xxx

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


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User
Posted 26 November 2017 17:43:34(UTC)

Many thanks Ruth and Lyn.

I carry his music player with me but so far he's said he's not interested in it. I'll try it again and also take on board your other suggestions. I guess sleeping would be better than agitation and one of the nurses has already suggested that this might be an option.

Linda

User
Posted 26 November 2017 17:44:29(UTC)

Ah, just seen Ruth's reply which crossed with mine. In the case of my step-father-in-law, there was no medication; the confusion and other-reality was a result of becoming dehydrated. In his case and my mum's, I was told that the brain tells the body that food and water are no longer needed and as the body starts to close down this triggers natural pain relief. .. the conscious brain simply doesn't acknowledge the pain. A side result is confusion and past times being replayed. Horrible for family and friends to witness but a happy place for the person that is slipping away.

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


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User
Posted 26 November 2017 17:54:48(UTC)

At the care home I work in we put classic fm quietly on a radio for the end of life. They hear it I’m sure. Its distressing for sure for all , but a privelage to spend time with someone so precious in their time of need
My thoughts with you xxx




If life gives you lemons , then make lemonade
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User
Posted 26 November 2017 20:07:35(UTC)

Just talking about it shows you are doing by instinct what you can do. Remember the confusion and agitation is his state of health and the drugs. Talk to the nurses but you just need to be there for him as I hope other family are there for you.

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User
Posted 26 November 2017 20:42:23(UTC)
My advice would be to go along with it it Linda, Trevor was very confused in the summer with the Sepsis and again in the last few weeks .
I also worked in care homes with people who had dementia and I found if they where unable to join me in reality then I would join them in confusion .
I always found the more you try to rationalise with someone in that level of confusion it just frustrates and confuses them more .
The old saying If You Can’t Beat Them Then Join Them “ comes to mind , whatever makes things easier for yourself and David is the right thing to do.
Thinking of you both .
Lots of love
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 27 November 2017 22:58:03(UTC)

Sending love. Ruth xxx

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User
Posted 28 November 2017 17:15:32(UTC)

Hi Linda
Hoping that David had a good night last night and that he remains pain free today. And hope that the confusion is less acute. Thinking of you at this impossible time.
Hugs
Ruth xxx

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User
Posted 28 November 2017 19:12:17(UTC)

Yes, like Ruth, you have been on my mind today Linda xxx

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


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User
Posted 29 November 2017 00:53:32(UTC)

Thinking of you both and sending love.

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User
Posted 29 November 2017 12:38:56(UTC)

Sending love x

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User
Posted 29 November 2017 15:41:58(UTC)

Thanks again for all your support. David is not much changed, sleeping a lot, eating hardly anything but still drinking water and milk, and being kept comfortable.

Although the hospice can't take him, with the help of the palliative care team and our hospicecare nurse, I am trying to get David moved from the hospital to a local nursing home. I visited the place yesterday and talked to the manager and checked the CQC inspection reports online. The manager should be visiting him this afternoon to assure herself that they can meet David's care needs and that he can make the journey from Exeter. I hope this works out. It will be much more peaceful and the nursing home has beautiful views across the bay to Otter Head, a place that David loves.

User
Posted 29 November 2017 18:59:35(UTC)

Hi Linda

Sounds like such a good plan - being somewhere calm and beautiful is important for David but also for you. Then you can just focus on spending time with him away from the hubbub of the hospital. Hope the transfer goes smoothly.

Sending lots of love

Ruth

xxx

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User
Posted 29 November 2017 19:44:45(UTC)
Sounds promising both for David and for you, hoping for a smooth transition and a peaceful night, look after yourself. Thoughts are with you.
Judith
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User
Posted 29 November 2017 21:25:08(UTC)
I really hope you can get David moved. Linda , I felt so strongly that I wanted Trevor moved to the hospice sadly it didn’t happen but I have everything crossed that you can get the move for David sorted.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 29 November 2017 21:27:55(UTC)

Sending wishes. More peace at a care home and regular turning and assisted feeding etc. Radio on !
So sorry you both in this position and you’re trying so hard. Xx




If life gives you lemons , then make lemonade
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User
Posted 29 November 2017 23:01:38(UTC)
My fingers are crossed that you can get David into the nursing home Linda, it sounds so much more restful all round. This is such a tough time for you as well, you know that we are all thinking of you and hoping that when the time comes, David will pass peacefully, he will be so much missed here. You are such a brave woman and a wonderful wife. Hugs and love to you both.

With Love
Devonmaid xxx
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User
Posted 01 December 2017 12:39:34(UTC)

The move to the nursing home should be happening this afternoon. I have just been to take a few things to put in David's room. There is a lovely large window with a low sill so he should be able to see the view even lying in bed.

 

If you click on this link, you should see the view he will have.

 

http://www.southampton.ac.uk/~imw/Budleigh-Salterton.htm

Linda

 

User
Posted 01 December 2017 13:31:11(UTC)

It looks lovely. I love that part of the world though many many years since I visited Budleihh Salterton. I hope the move goes well and it gives David strength to enjoy some time there and for you to spend quality time with him. Thinking of you both. Paul

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User
Posted 01 December 2017 14:44:30(UTC)

Both my wife an I love Devon, what a lovely view David will have. I hope the move goes quickly and efficiently for you both.

Arthur

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User
Posted 01 December 2017 14:55:41(UTC)

That looks beautiful Linda. Well done you for making it happen. Hope it all goes smoothly this afternoon and that you are both able to relax a little more in these peaceful surroundings. Sending lots of love to you both.

Ruth xxx

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User
Posted 01 December 2017 15:43:48(UTC)

When I lived in Devon I used to play golf in Budleigh Salterton. Beautiful area, hope you both get some quality time there together. X

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User
Posted 01 December 2017 16:40:18(UTC)

Although David found the journey very tiring he is now in his room in the nursing home. I visited just for a few minutes to make sure he was alright. He was very sleepy so I left him to rest quietly.

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User
Posted 01 December 2017 21:28:44(UTC)

It looks a lovely place Linda. We are on our way to the Gambia but you will be in my thoughts - please give David a kiss from me x

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


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User
Posted 01 December 2017 23:26:36(UTC)

Pleased to hear that David is now in the nursing home. The view looks amazing. I do hope he is able to appreciate it and that his needs can be met. Take care of yourself

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User
Posted 02 December 2017 07:44:29(UTC)
I’m so happy to read this Linda, in the context of everything of course. My love goes with you xxxxx
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User
Posted 02 December 2017 18:09:37(UTC)

I'm very sad to have to tell you that David died at about 4.30 this afternoon. One of the care home nurses called me this morning to say that he was 'very poorly'. When I asked her if that meant what I thought it did, she said yes. So I arrived about 10.30. David was drifting in and out but seemed comfortable. I spent the day reminiscing and showing him some old photos. I was holding his hand when he died.

Many thanks to all of you for your kind words of support over the last few weeks.
Linda

User
Posted 02 December 2017 18:12:13(UTC)

Thoughts are with you at this sad time ,
Debby

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