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Tony on Palliative care only

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User
Posted 03 Jul 2022 at 07:32

Tony is now on end of life care, He has been put on gold standard Palliative care and has a green card with contact details for emergency use. He got really uset on thursday as the Macmillan nurse was talking about where he wanted to die and also about treatments he would want as things worsen. She has put everything in place for him and she asked him about having a DNR in place, he got a bit hysterical then but when she explained it does not mean they will not treat him but just that when his heart stops they will not try to start it again, We both tried to explain that they would almost certainly crack his ribs if they tried this and (the macmillan nurse) explained that even if they did get it started it would just stop again and in the end he agreed to it. There is no indication that he will go soon but he is definitely getting weaker and sleeping more, when he has his dialysis it completely wipes him out and he quite often seems away with the fairies after he has had a sleep after his dialysis sessions. Tony's pains are almost completely under control so that is good. 

 

regards Barbara x

Edited by moderator 03 Jul 2022 at 08:32  | Reason: Nurses name removed

User
Posted 14 Aug 2022 at 15:23

Thank you everyone for your kind wishes, at the moment i just feel relief as the last week was awful, there where good times as well he hugged and kissed his children with so much strength when they where with him and they will all take that memory with them. His last night i actually climbed in the bed with him so i could hold him I am so glad i had that last night with him. At the very end he died peacefully . I know that the funeral will hit me really bad but at the moment i have sent all the children home so i can have a bit of normality, once again thank you all.

 

love Barbara xx

User
Posted 17 Aug 2022 at 08:30

Once again thank you everyone for your kind words , His funeral is on the 31st august at 3pm and if anyone wants to raise a glass to him his favorite was a pint of Batemans XXX.

 

Barbara xxx

User
Posted 02 Sep 2022 at 08:27

thank you all for your good thoughts, Tony's funeral was lovely, the words spoken about him and the amount of people who came to say goodbye was so many more than we expected he was so well loved. One of my sons wrote this poem and i would like to share it with you all.   A Fathers love. by Glenn Thein. 

 

A fathers love is instant

A fathers love is kind

A fathers love is patient

A fathers love is mine

A fathers love is shouting

A fathers love is cheering

A fathers love is complaining

A fathers love is accepting

A childs love is confused

A childs love is in awe

A child love is angry a childs love feels safe

A childs love continues when your gone

A childs love lasts more than a lifetime

A childs love wants to be with you

A childs love will never forget 

XXXX

 

User
Posted 03 Jul 2022 at 08:37
So very sorry to read this Barbara. Don’t know what to say. Love and strength to you both xx
User
Posted 03 Jul 2022 at 12:24
So sorry to hear this news

Regards Barry

User
Posted 03 Jul 2022 at 12:52

So sorry to read this Barbara. I can’t even begin to imagine what you are all going through. Sending lots of love and strength to you, Tony and all the family x

User
Posted 03 Jul 2022 at 14:24

Hi , so sorry to hear this news sending you love at this sad time.

Love John & Pat xx

User
Posted 03 Jul 2022 at 15:42

Barbara, sorry to read of your situation, sending love and hugs. 

Thanks Chris 

User
Posted 03 Jul 2022 at 17:26
Thinking of you at this sad time ,sending hugs x

Debby

User
Posted 03 Jul 2022 at 17:40
Sorry for you Barbara, try and be brave.
User
Posted 03 Jul 2022 at 18:48

Must be tough having those conversations, difficult to accept we're on the earth for a finite time. This will come to all of us one day, so make the best of it whilst here, and when the inevitable happens try and make it at least comfortable and hopefully painless. Sending hugs x

Dave

User
Posted 03 Jul 2022 at 21:49
Oh Barbara, I am so sorry. The hardest bit sometimes is having the difficult conversations, though, and you have got over that hurdle so hopefully can concentrate now on making some happy memories and keeping him as comfortable as possible. Don't forget to look after yourself; the strength that you have shown up to now will help you in the next few weeks and months.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Jul 2022 at 22:23

So sorry to hear Barbara. He gave it a good fight while he was able to... 

Good luck to everyone coping with the insidious big C

User
Posted 04 Jul 2022 at 13:01

So very sad to hear this Barbara.  Tony has certainly fought a hard battle. Thinking of you both and your family.

Angex

 

User
Posted 04 Jul 2022 at 14:12

I’m so sorry to read this Barbara. Having the DNR conversation would have been so hard for both of you. I’ve read your posts and admired the way you’ve managed. Please ensure you take care of yourself, get all the help and support you can, for both of you. Sending you love and strength. 

 

 

Edited by member 04 Jul 2022 at 14:13  | Reason: Not specified

User
Posted 04 Jul 2022 at 22:50

I haven’t looked in on here for such a long time but always remember you from one Essex babe to another 😍it seems that you are getting to end stages . I just wanted to offer advice to you , get as much rest and sleep as you possibly can . A tired soul can’t cope and you need strength to cope in the next phase . Rest and recoup , come back renewed to face what you need to face xxx

NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 Jul 2022 at 06:03
So sorry Barbara, get as much help from where ever you can so that you can look after booth of you. Hope things go as easy as possible for both of you.

Bill

User
Posted 05 Jul 2022 at 06:13
Sorry to read this news, love and strength being sent to you both xx
User
Posted 05 Jul 2022 at 11:58

So sorry to read this Barbara. Sending love to you both. 

Ido4

User
Posted 05 Jul 2022 at 15:47

My thoughts are with you both.

Roger
User
Posted 13 Jul 2022 at 07:40
Be strong for him.

I have already put DNR on my GP’s notes, because, as your MacMillan Nurse says, about cracking ribs.

In our thoughts.

Chris

User
Posted 16 Jul 2022 at 06:55

Tony is still in hospital, his infection level came down but now seems to be on the rise again. hope they soon sort it as he really wants to come home and is losing quite a bit of weight. 

 

 

barbara x

User
Posted 19 Jul 2022 at 14:03

Really pleased he is home Barbara sending my love to you both 

User
Posted 19 Jul 2022 at 18:53
Sending that comfort blanket to you now Barbara xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jul 2022 at 19:06

Thinking about you both Barbara. Good thing the comfort blanket is on its way to you, it’s sent with hugs. 

User
Posted 19 Jul 2022 at 22:35

So pleased to hear that Tony is back home with you Barbara.  Thinking of you both and sending our love.

Ange x

User
Posted 20 Jul 2022 at 11:46

Barbara, sorry to hear of your situation, good that you have him home. Sending love and hugs.

Thanks Chris 

User
Posted 22 Jul 2022 at 09:09
Send you both love and ((((((hugs)))))))

Bri

User
Posted 23 Jul 2022 at 14:29

Hi Barbara hope you are doing well. I think the fact all those bad infection markers and fears the cancer had spread to lungs and chest, might need reinterpreting in the light of the fact he had COVID when these investigations were happening. The very fact he has got over COVID when we were thinking he was in the end game is hopeful of an improvement in his quality of life for a while.

Dave

User
Posted 04 Aug 2022 at 06:05

Tony only had a short dialysis yesterday as his blood pressure dropped really low, the decision has now been made to stop the dialysis as the effect of it is so hard on his body. Tony is aware of what this means and at least he got to see his brothers and sisters at the weekend, it was very emotional as they know that that is the last time they will see him. I just hope that he just goes gently and not in any pain and is comfortable. 

 

Barbara x

User
Posted 11 Aug 2022 at 12:32

Tony passed away peacfully last night, he had had a bad couple of days but in the end just left us quietly.

 

 

barbara x

User
Posted 11 Aug 2022 at 14:55
Thinking of you and your family at this sad time

Sending hugs

Debby

User
Posted 11 Aug 2022 at 15:18

So sorry to read this Barbara, it was a kindness he passed peacefully. Sending you love and strength. 

User
Posted 11 Aug 2022 at 16:22

So sorry to hear of your husband passing away, deepest condolences to you and your family 

ann

User
Posted 11 Aug 2022 at 18:35

Sorry to hear that Barbara. Once they stopped the dialysis things were going to change quickly. x

Dave

User
Posted 11 Aug 2022 at 22:56
Although it came very quickly I am so pleased that Tony was able to leave gently, comforted by the touch of hands he knew well and reassured by voices he loved.

Barbara, you have been a lioness throughout Tony's illness, particularly since the treatments started to fail, and have shown great courage and dignity. All I can wish for you is a little more of that strength to get you through the coming days, weeks and months.

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

User
Posted 11 Aug 2022 at 23:19

So sorry to hear this really sad news Barbara. Our thoughts are with you and your family at this really difficult time. May Tony now be at peace ❤️ Sending love xx

User
Posted 12 Aug 2022 at 06:41

So sorry to hear this sad news Barbara,

Regards Barry

User
Posted 12 Aug 2022 at 07:45
So sorry Barbara, thankyou for taking the time to let us all know on this forum.
User
Posted 12 Aug 2022 at 11:53

Hi Barbara,

You supported Tony with great courage and cared for him to the end, you are a very strong lady.Hoping the pain will ease with with the passing of time.

Love John & Pat.

User
Posted 12 Aug 2022 at 15:08
So saddened to read this Barbara. Love and strength to you and all your family at this difficult time.

June and Tony

User
Posted 12 Aug 2022 at 16:08
Sorry to learn about Tony's passing Barbara. Sincere condolences to the family.
User
Posted 12 Aug 2022 at 17:02

So sorry to read this Barbara. Sending condolences to you and yours. 

Ido4

User
Posted 12 Aug 2022 at 17:17

Much love to you and the wider family

User
Posted 21 Aug 2022 at 18:49
So sorry to hear Barbara, he fought the battle with all he had. RIP Tony

Good luck to everyone coping with the insidious big C

User
Posted 30 Aug 2022 at 12:34
Well all be with you, even though you won’t see us. Sending hugs and strength.

Merilyn

User
Posted 30 Aug 2022 at 23:31

We’ll be thinking of you tomorrow Barbara.  Sending you love and strength.

Ange xx

User
Posted 31 Aug 2022 at 01:28
You will be on my mind today Barbara xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Aug 2022 at 08:38

Thinking of you and your family today Barbara. May Tony now rest in peace and pain free xx

User
Posted 31 Aug 2022 at 09:37
Thinking of you today, somehow you’ll get through it with those who love you and Tony around you. There’s no need to try to be strong, love Janet x
User
Posted 02 Sep 2022 at 09:35

I’m sorry to hear this Barbara. Sending love 

User
Posted 02 Sep 2022 at 16:35

Well Barbara, now it comes to moving on with your life without Tony. I've only lost one person in my immediate family; my father at 86 and that is to be expected. So I can empathise with you a little, but it is not like losing a partner. I can just send you hugs.

Dave

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User
Posted 03 Jul 2022 at 08:37
So very sorry to read this Barbara. Don’t know what to say. Love and strength to you both xx
User
Posted 03 Jul 2022 at 12:24
So sorry to hear this news

Regards Barry

User
Posted 03 Jul 2022 at 12:52

So sorry to read this Barbara. I can’t even begin to imagine what you are all going through. Sending lots of love and strength to you, Tony and all the family x

User
Posted 03 Jul 2022 at 14:24

Hi , so sorry to hear this news sending you love at this sad time.

Love John & Pat xx

User
Posted 03 Jul 2022 at 15:42

Barbara, sorry to read of your situation, sending love and hugs. 

Thanks Chris 

User
Posted 03 Jul 2022 at 17:26
Thinking of you at this sad time ,sending hugs x

Debby

User
Posted 03 Jul 2022 at 17:40
Sorry for you Barbara, try and be brave.
User
Posted 03 Jul 2022 at 18:48

Must be tough having those conversations, difficult to accept we're on the earth for a finite time. This will come to all of us one day, so make the best of it whilst here, and when the inevitable happens try and make it at least comfortable and hopefully painless. Sending hugs x

Dave

User
Posted 03 Jul 2022 at 21:49
Oh Barbara, I am so sorry. The hardest bit sometimes is having the difficult conversations, though, and you have got over that hurdle so hopefully can concentrate now on making some happy memories and keeping him as comfortable as possible. Don't forget to look after yourself; the strength that you have shown up to now will help you in the next few weeks and months.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Jul 2022 at 22:23

So sorry to hear Barbara. He gave it a good fight while he was able to... 

Good luck to everyone coping with the insidious big C

User
Posted 04 Jul 2022 at 13:01

So very sad to hear this Barbara.  Tony has certainly fought a hard battle. Thinking of you both and your family.

Angex

 

User
Posted 04 Jul 2022 at 14:12

I’m so sorry to read this Barbara. Having the DNR conversation would have been so hard for both of you. I’ve read your posts and admired the way you’ve managed. Please ensure you take care of yourself, get all the help and support you can, for both of you. Sending you love and strength. 

 

 

Edited by member 04 Jul 2022 at 14:13  | Reason: Not specified

User
Posted 04 Jul 2022 at 22:50

I haven’t looked in on here for such a long time but always remember you from one Essex babe to another 😍it seems that you are getting to end stages . I just wanted to offer advice to you , get as much rest and sleep as you possibly can . A tired soul can’t cope and you need strength to cope in the next phase . Rest and recoup , come back renewed to face what you need to face xxx

NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 Jul 2022 at 06:03
So sorry Barbara, get as much help from where ever you can so that you can look after booth of you. Hope things go as easy as possible for both of you.

Bill

User
Posted 05 Jul 2022 at 06:13
Sorry to read this news, love and strength being sent to you both xx
User
Posted 05 Jul 2022 at 11:58

So sorry to read this Barbara. Sending love to you both. 

Ido4

User
Posted 05 Jul 2022 at 15:47

My thoughts are with you both.

Roger
User
Posted 13 Jul 2022 at 07:40
Be strong for him.

I have already put DNR on my GP’s notes, because, as your MacMillan Nurse says, about cracking ribs.

In our thoughts.

Chris

User
Posted 13 Jul 2022 at 19:52
Tony has had to go into hospital his infection level had gone through the roof, he has being given intravieneous antibiotics to get it down, he has a chest infection and will probably be in for about 10 days. He is in lincoln hospital as they have a renal unit there and he can get his dialysis done there.

onwards and upwards

barbara x

User
Posted 16 Jul 2022 at 06:55

Tony is still in hospital, his infection level came down but now seems to be on the rise again. hope they soon sort it as he really wants to come home and is losing quite a bit of weight. 

 

 

barbara x

User
Posted 16 Jul 2022 at 07:05
Keep thinking of you. I literally lose the plot in hospital with noise sensitivity etc. I don’t blame him. Wishes to you both x
User
Posted 16 Jul 2022 at 12:39
Oh, I really hope he is home with you soon Barbara xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jul 2022 at 14:54

Thinking of you both and hope Tony’s  infection can be sorted asap so he can come back home where you can have time together.

Ange x

User
Posted 18 Jul 2022 at 06:21

Tony is coming home today sometime this afternnon as he is having dialysis this morning, he had a scan on saturday to see what was going on as his infection markers where going up again, the cancer is spreading really fast now and it has spread to his lungs and chest, they phoned me from the hospital yesterday as he asked them for the results , they wanted to wait until someone was with him but he insisted and then got in a state when they told him so they phoned to see if i could go up there, i asked on the phone how long they thought he had left and they said probably about 3 months or if the dialysis gets too much for him then it would only be a few weeks once he had stopped it, at the moment he wants to carry on with dialysis. I have told our 4 children he is coming home today but have not yet told them the whole story as one of them is in tunisia on holiday at the moment and i know his reaction would be to try to come straight . Just getting my head around it at the moment although i knew he was getting worse but being told seems to make it worse.

 

 

barbara x

User
Posted 18 Jul 2022 at 12:15

So sorry Barbara, our thoughts are with you and Tony and all the family at this really difficult time. Glad Tony is coming home though where he wants to be xx

User
Posted 18 Jul 2022 at 12:22

Sorry to hear this Barbara. You're right not to interrupt the children's (I assume we are talking 30s or 40s) holiday. There is nothing anyone can do, so the living should get on with their lives.

Coming to terms with his imminent death is just not something us humans had to do before medical science helped us live so long. 

These next few months will be tough. Please remember to set aside some time for yourself. I don't know if you have some hobby you can do once a week ideally with other people, but even working in the garden for an hour could be good.

Dave

User
Posted 18 Jul 2022 at 22:36
Heart breaking for you Barbara. As ever only strength and love to you both x
User
Posted 18 Jul 2022 at 23:10
So difficult for you and your family now. You all need each others support. Stick together and look after you as well.

Hope things are as comfortable as possible in the time left.

Cheers

Bill

User
Posted 19 Jul 2022 at 01:37
Sending as much strength to you all as I can. I hope you can spend your time together as much as possible.

My thoughts are with you

Michael

User
Posted 19 Jul 2022 at 10:56

Thanks everyone for your lovely replies, he finally got home at 8.30pm last night and was so pleased to be home.

 

love barbara x

User
Posted 19 Jul 2022 at 14:03

Really pleased he is home Barbara sending my love to you both 

User
Posted 19 Jul 2022 at 18:53
Sending that comfort blanket to you now Barbara xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jul 2022 at 19:06

Thinking about you both Barbara. Good thing the comfort blanket is on its way to you, it’s sent with hugs. 

User
Posted 19 Jul 2022 at 22:35

So pleased to hear that Tony is back home with you Barbara.  Thinking of you both and sending our love.

Ange x

User
Posted 20 Jul 2022 at 11:46

Barbara, sorry to hear of your situation, good that you have him home. Sending love and hugs.

Thanks Chris 

User
Posted 22 Jul 2022 at 09:09
Send you both love and ((((((hugs)))))))

Bri

User
Posted 23 Jul 2022 at 13:39
got a phone call thursday from the hospital tony had been in to say he had covid and now i have it, tony seems ok,

by the time we new he had it it was too late for the meds he should have taken but his macmillan nurse said that quite a few of her cancer patients have had it and have not been unwell.

regards barbara xx

User
Posted 23 Jul 2022 at 14:29

Hi Barbara hope you are doing well. I think the fact all those bad infection markers and fears the cancer had spread to lungs and chest, might need reinterpreting in the light of the fact he had COVID when these investigations were happening. The very fact he has got over COVID when we were thinking he was in the end game is hopeful of an improvement in his quality of life for a while.

Dave

User
Posted 24 Jul 2022 at 09:29

Hi Dave , he had a ct scan before he came home and it showed it has spread to his liver,lungs.chest area and other places, it is spreading rapidly and the macmillan nurse has said it will be weeks and not months because of how it is advancing, x

 

barbara.

User
Posted 24 Jul 2022 at 10:24

Much love to you and your family.  Don't know what else to say.

User
Posted 24 Jul 2022 at 10:30
So sorry to hear this Barbara. Sending strength x
User
Posted 24 Jul 2022 at 17:10

OK thanks Barbara, sorry it is so advanced. X

Dave

User
Posted 24 Jul 2022 at 17:47

Very sad to read this Barbara… Sending love and thinking of you and Tony and your family.  Look after yourself.

Ange x

User
Posted 24 Jul 2022 at 21:15

Oh Barbara, what can I say. My thoughts are with you and Tony, sending you both love and strength.

Leila x

User
Posted 04 Aug 2022 at 06:05

Tony only had a short dialysis yesterday as his blood pressure dropped really low, the decision has now been made to stop the dialysis as the effect of it is so hard on his body. Tony is aware of what this means and at least he got to see his brothers and sisters at the weekend, it was very emotional as they know that that is the last time they will see him. I just hope that he just goes gently and not in any pain and is comfortable. 

 

Barbara x

User
Posted 04 Aug 2022 at 11:42
I’m so sorry Barbara. Although all of us on here aren’t related we are still one big family and can imagine the love and hugs being sent to you both right now. Be strong. I pray Tony has the pain free comfortable end we all wish for him. I’m welling up here as I write this. You’ll be in my thoughts. Much love and hugs.

Merilyn

User
Posted 04 Aug 2022 at 12:22
Very difficult to read and can’t imagine the pain. Love and wishes and strength to you all xx
User
Posted 04 Aug 2022 at 12:56
So sorry to read how his cancer has spread and it is sensible to make alleviation of pain and his comfort the priorities now.
Barry
User
Posted 04 Aug 2022 at 16:32

Oh Barbara, I echo all these thoughts. It is not an easy post to read. Tony is at home and he has you by his side. Try and make sure you take care of your self, you need all your strength. 
You are in my thoughts.

Leila 

 
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