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User
Posted 04 May 2017 at 23:49

Well here we are where we always knew we would be. Have spent the last 10 months pretending it wasn't happening, but today we saw the onco and the upshot is no more active treatment and just weeks to go before we run out of road.


It feels as absolutely awful and impossible and frightening as I thought it might. So I've been counting my blessings as a way of hanging on in there...


There's Tony of course, my soulmate and the love of my life. There's his family who I told today and who were so loving and supportive and kind and full of hugs and appreciation. And my family who are rock solidly there to help me in any way they can. Plus the wonderful palliative care team who I know will do their absolute best for us. And you too for being there to help and listen and understand from the very start. I would have often been very alone without you.


That's one helluva lot of love and compassion and practical support to carry us through the next weeks, and to hold me up through the next years. Can't imagine how we'll make it, but of course we will.


Love


Ruth (Eleanor)


x

User
Posted 08 Aug 2017 at 10:32

Dear Ruth,

I am so sorry to read of your loss of your dear Tony. I can imagine how you are feeling now - it is now over seven years since I lost my husband, Mike, in similar circumstances.

The fried egg theory is a good one, I have always heard it referred to as 'balls in a jar' but it is similar. Initially the theory goes the grief is all-consuming but as you start to change your life the ball of grief reduces as other balls enter the jar.

As you say we are all different but if the fried egg theory has resonated with you you may take a similar route to me. I can say for me over time the grief has softened and little pockets of happiness started to creep in. Initially life had no purpose at all and I felt completely lost, but I hope it helps you to know that I am now almost always happy. I think of Mike often, he is really still, and always will be, a part of my life. But my memories have become comfortable and comforting. You may think this is impossible for you now, and it does take time, and as long as it takes, there is no timescale. But the overwhelming feelings you have now will reduce.

Initially there is so much to do, but slowly when I was ready I found I took up new interests and met new people. I also took up volunteering, which put some purpose back into life. It was really one foot in front of the other and several steps backwards to begin, but I am now fortunate to be living a good happy life, with Mike tucked away quietly in my heart forever.

I hope my story helps just a little to give you hope. Now your mind and body must be exhausted and you need to take care of you as you start to heal. Please take any offers of help, people like to help but don't always know what to do, and just little bits of practical help can help you so much.

I wish I could make it easier for you, but as I was told at a similar time, it is a tunnel we go through and eventually we reach the light at the other end.

Take care, Janet, x

User
Posted 04 May 2017 at 23:49

Well here we are where we always knew we would be. Have spent the last 10 months pretending it wasn't happening, but today we saw the onco and the upshot is no more active treatment and just weeks to go before we run out of road.


It feels as absolutely awful and impossible and frightening as I thought it might. So I've been counting my blessings as a way of hanging on in there...


There's Tony of course, my soulmate and the love of my life. There's his family who I told today and who were so loving and supportive and kind and full of hugs and appreciation. And my family who are rock solidly there to help me in any way they can. Plus the wonderful palliative care team who I know will do their absolute best for us. And you too for being there to help and listen and understand from the very start. I would have often been very alone without you.


That's one helluva lot of love and compassion and practical support to carry us through the next weeks, and to hold me up through the next years. Can't imagine how we'll make it, but of course we will.


Love


Ruth (Eleanor)


x

User
Posted 05 May 2017 at 00:04

My heart is weeping for you - you will get through it, of course - everyone does - but my wish for you is that Tony's pain is managed as much as possible so that he can end his days quietly and peacefully with the woman he loves right beside him holding him safe. I once wrote on here about the difference between being torn away from this world and being gently lifted from it on a cloud of love and care; you have so much love to give him still x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Aug 2017 at 20:48
Oh Ruth,
You knew I would be here sooner or later and so here I am just another wife with nothing much to offer in practical terms . I can't make the pain any Less, I can't make the out come any different but I have a huge heart and pretty big ears to listen . Oh and of course a ginormous pile of comfort blankets to drape you in .

Thank you so much for the links and I totally get the egg anology I also loved Janet's post which also gave me comfort and I hope it did for you as well .

Grief has no limits on time / emotion / or how any one deals with it we are all different, we can only get through it as best we can . What ever feels right Is right .

Grief is a journey for some the journey is short and we are able to get to the light at the end of the tunnel withought to many grief stops
For others the journey takes longer and we think we are at the right stop and we try to get off but it isn't our stop .
Sometimes we think we can't get of the train but then suddenly the light says hey this is your stop.
Grief is such a strange journey sometimes we don't know we have alighted from the platform until we have arrived .

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Aug 2017 at 22:02

You have a heart the size of a football stadium Julie, and enough empathy to fill several olympic-sized swimming pools. Plus a ton of wisdom. Thank you for all of those things...


I've been reading a pile of stuff about grief, and have just ordered another load of memoirs of people who have been through it and are still standing. I have this notion that if I can just find the right words, something that accurately expresses how this grief feels, it will somehow be easier to live with it, to let it be. I'm so used to being able to explain things, to communicate how I'm feeling, that my current incoherence feels like choking. Battered with emotion but no words to pin it down / hold it steady while I brace myself for the next onslaught.


Part of me suspects that I'm just p*ssing in the wind however! Seems unlikely that a couple of well-written, well-observed sentences will stop the storm. But here's a starter for 10 from Jamie Anderson...


"Grief, I’ve learned, is really love. It’s all the love you want to give but cannot give. The more you loved someone, the more you grieve. All of that unspent love gathers up in the corners of your eyes and in that part of your chest that gets empty and hollow feeling. The happiness of love turns to sadness when unspent. Grief is just love with no place to go.


It’s taken me seven years to realize that my grief is my way of telling the great vastness that the love I have still resides here with me. It won’t stop. That’s how love goes."


Hugs and strength to you and to all of us.


Ruth/Eleanor


x

User
Posted 11 Aug 2017 at 23:26
Oh Ruth ,
Thankyou for the Football Staduim comment but I think that's my bum your talking about 😳

Most people think I am a dog breeder but actually I am a grief councillor you wouldn't believe how many people phone me to enquire about a puppy only to burst into tears before they have actually spoken to me .
It's something I deal with on a weekly basis , I know some people would say it was only a dog and doesn't compare with a person my answer to that is it is the love they felt and there grief is real .

Of course I wouldn't compare the loss of a loved one to that of a pet but these people are genuinely grieving and you thought my life was just puppy poop !

Time ! Time ! Is the only healer and unfortunately you can't rush time and nor she would we try to. At the moment you are living in grief every moment of every day , sleeping it / eating it / breathing it / dreaming it . It is all consuming but I promise you one day it won't be your first thought when you wake . Ok it will be your second thought but that is progress until one day you will feel the Sun on your skin and enjoy the taste of food again .

There is no magic formula only time can heal you at the moment you feel like you are wading through Treacle with your wellies on stuck to the treacle and unable to move forward every step is such a huge effort. In time the treacle will become like syrup and you will slip and slide for a bit maybe even slip backwards for a while , eventually the syrup will become like sugar water and you could even try your flip flops , the wellies will be long gone but take care because that grief is still there and the floor is still slippery.
Then the Sun will come out and dry the floor completely and you won't even worry about what shoes to wear , you might even go bare foot.

I am here when you need me .
BFN
Julie X



NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 May 2017 at 21:28

When you come here Eleanor it should be a time for taking, all your giving is now for Tony.

User
Posted 17 May 2017 at 21:24
Ruth the old saying ! It's not over till it's over ! and certainly not until the Fat Lady Sings is so true . When any of us is handed the terminal card our first instinct is panick and terror , then we learn to live with the diagnosis ( it takes awhile ) but we do learn to live with it because staying in that terror moment is so draining .
Th second phase of emotion is what I call the hope acceptance stage where we understand the predicament we fully accept the reality of what is happening BUT we aren't giving up hope just yet.

I did a poem ages ago about the train journey ( apparently it's on page 2 ) (thank you Lyn) some of us take the scenic route with a few stops on the way and even a bit of sight seeing , others take the non stopper but all of us with the T ticket arrive at the same station .

Thinking of you X
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Aug 2017 at 22:16

Thank you so much Janet - it's a huge help to know that pockets of happiness will eventually start to return to my life.


I'm in that 'what's the point of anything' state of physical and emotional exhaustion right now but I know that I have an amazing pool of people and possibilities in my life that will sooner or later give me back a sense of purpose and meaning. No way of hurrying things up though. It's hard to just sit still and allow the grief to be whatever it needs/wants to be, particularly when it's all so painful. But that's the only option I guess.


Thanks for shining a light.


Love


Ruth / Eleanor


x

User
Posted 12 Aug 2017 at 08:30

Blimey Julie - you are in a league of your own. I didn't need to send for all those books: you have more wisdom and love and poetry and understanding and humour in your treacle-covered little toe than the rest of the world put together.


There aren't a lot of up-sides to this whole situation but discovering you is definitely one of them. If there was a 'massive roar of appreciation / Mexican wave / standing ovation' button I'd click on it every hour on the hour. As it is, all I can do is click the 'thanks' button. Doesn't even begin to reflect who you are and what you give but it comes from my heart.


Tons of love


Ruth xxxx

User
Posted 05 May 2017 at 06:24

I can't describe how I feel for you , and certainly can't top Lyns words. But I do remember Lyn saying to keep talking even when you think your partner can't hear. Because they can and will take comfort from your voice.

User
Posted 05 May 2017 at 06:54

In the distance I can feel your sorrow.

I'm so sad that you have come to this situation.

Thinking of you.

I really really wish it all develops ad less painful as possible for you both.

I also wish you get strength to undergo all this in a peaceful way..

Big hug from somebody in Spain who is also thankful to this friendly site.

Hug,

Lola

User
Posted 05 May 2017 at 07:25

Oh Eleanor (you'll always be Eleanor to me),

I don't often cry but my eyes are wet. The loving support that all of you who are our partners give us the courage to persist and endure.

David (my real name, a good Welsh name, although I haven't got an ounce of boyo in me, but I do love you Taffs, particularly Max Boyce)

User
Posted 05 May 2017 at 10:27
I don't post really on here but I have been following your posts since you arrived, my loved one being diagnosed shortly before your OH. You have given me immeasurable hope and strength and been a constant reminder to live in the present and to squeeze every drop of positive you can. I am so sorry you find yourselves here and wish you all strength and love in the time ahead.
User
Posted 05 May 2017 at 11:24

Eleanor, I don't post much at all now but have continued to follow your posts. I am so sorry to hear you have come to this point. As you say it is going to be so hard but there will still be memories to be made. Grab them when they happen and try to ignore all the unimportant  stuff. You have been so strong and you will get through this. I sadly know how hard it is. I'm glad you now have the support of the family. Make sure you use that support and take good care of yourself. Big hugs


Rosy xx

User
Posted 05 May 2017 at 11:59

Dear Eleanor,
I can't add anything either to what has already been expressed but I am thinking of you both and hoping that your lovely man and you find comfort in each other and that you will be able to talk together of the things that are important to you.

Love
Sandra

***

We can't control the winds - but we can adjust our sails
User
Posted 05 May 2017 at 13:51
Oh Eleanor,
Such sad news to read my heart goes out to you and Tony
. I am glad though that you know have been able to tell friends and family everyone needs a support network in such sad times. None of us know how long our journey will be or how difficult it will become but we are all behind you .
Sending love! Hugs! And one very much used and soggy comfort blanket.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 May 2017 at 16:03

Eleanor


My love and best wishes to you, Tony and all your loved ones.


Ulsterman

User
Posted 05 May 2017 at 18:42

Hi Ruth


Very best wishes to you and Tony.


Gordon

User
Posted 05 May 2017 at 19:53
Thinking of you and Tony.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 05 May 2017 at 21:21

Hi Ruth,

I have read your story and found your writing uplifting, warm and humorous. I can't begin to imagine how you are feeling but I am so sorry to read this news.

Regards

Clare

User
Posted 05 May 2017 at 22:43

Ruth,

So sorry you have reached this place, no comfort in that we all have this prospect at some point. Knowing you are there may at least focus you on what needs doing. You have the support now of your families and this will help so so much. It is hard to underestimate the difficulties of the next few weeks but you will find the strength and though we can do little to help you, our support is here. Thinking of you and Tony tonight.

User
Posted 06 May 2017 at 07:24
Eleanor

Sorry to hear where you are,just to say we are thinking of you both.

Thanks Chris
User
Posted 06 May 2017 at 08:24
I'm not good at putting feelings into words but just wanted you to know that I am thinking of you both.


Kevan

Edited by member 06 May 2017 at 08:26  | Reason: Not specified

User
Posted 06 May 2017 at 10:16

My god so sorry to hear this sad news--I've only been a member of this forum since March but your kind words re my situation have been really helpful. Can't believe how you can still share your concerns for others at what must be a very traumatic time for you. All I can do is send my love to you and Tony and hope you manage this situation as best you can.
Thinking of you both xx

User
Posted 06 May 2017 at 10:25
Ahhh my love care and support to you lovely lady. I hope you and Tony have time to chat and reflect, you both get the support you need.
User
Posted 06 May 2017 at 13:36

Oh Eleanor-Ruth, my heart goes out to you! I have trod this path ahead of you, as you know, but everyone has to do it for themselves and in their own way. You will find the way that is best for you. So glad you have told the family and are finding support there.

I am just about to go away for a few days and will probably be out of internet access, but will be thinking of you and getting in touch later on.

Marje

User
Posted 16 May 2017 at 16:33

I'm just typing this message to push this thread to the top of the recent messages in case Eleanor pops in so that she knows that we are thinking of her and Tony xxx

User
Posted 16 May 2017 at 16:57

Nice one sallyyy.

User
Posted 16 May 2017 at 17:24

We all think of them.

Let them know.

User
Posted 16 May 2017 at 21:12

Thanks Sally and all...really do appreciate all your thoughts and good wishes. Have been popping in occasionally to catch up on how people are doing but have been a bit too overwhelmed to contribute much. Hope to do so again soon - the forum remains a special and helpful place for me. And you are a special and helpful set of people!


The terminal prognosis has been a lot to get our heads around (odd since we knew that this was the destination we were heading for) and we are only just maybe/maybe not/tentatively sticking our heads out of the hamster hole and realising that it isn't actually over yet. We are getting superbly intelligent, compassionate and thoughtful support from the palliative care team. And Tony continues to be extraordinary.


E


xxx

User
Posted 16 May 2017 at 22:38

Thinking about you Eleanor x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Aug 2017 at 22:06
Eleanor,
Please accept my sincerest condolonces on the loss of your partner just over a month ago.
With your usual dignity you decided to share this sad news by quietly updating your profile.
Take care.
User
Posted 07 Aug 2017 at 14:57

This is terrible! How did we miss this? Eleanor, I am so, so sorry to know that Tony has gone and that a whole month has slipped by without us twigging - and there you have been, quietly supporting others and sharing your experience. You have such a good heart; my love and thoughts are with you xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Aug 2017 at 15:38

Thank you Mona, and Lyn.


Didn't want to post the news at the time. So many good people on this site fighting hard to stay positive in spite of all the horrors that this disease throws at them, I though I'd wait until I had a bit of perspective (probably several decades at this rate) rather than unleashing a flood of misery on all you kind souls. A couple of people guessed and have sent me messages so I haven't felt forgotten. And it's been good to read some of the recent updates from Julie, Paul and David, and others who have been so supportive of me.


The loss of my dear soulmate is as absolutely awful and painful as I thought it might be. No help for it I suppose. But at least Tony died at home and wasn't in pain, two aspects that will eventually be a huge comfort.


And I've learned some things that might be useful to others at some point - about palliative sedation, Dignitas and Exit, and about D-I-Y funerals. I'm currently learning, to my cost, about how not to do a probate application. And about the fried egg theory of grief: https://www.funeralzone.co.uk/help-resources/bereavement-support/the-grieving-process/tonkins-model-of-grief which seems to sum up my current state of despair but also to offer some future hope.


Would have been nicer to have been able to remain in ignorance but none of us have been given that choice sadly.


Love


Ruth / Eleanor


xxx


 


 


 

User
Posted 07 Aug 2017 at 15:40

Still sending love Eleanor. Tony was very lucky to have you - and I know you felt very lucky to have him xx

User
Posted 07 Aug 2017 at 16:16
I am so sorry to read of your loss, my sincere condolences

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 07 Aug 2017 at 17:55

Please accept my sincere condolences too Eleanor.

What a strong, brave wife you have been. The love of your life is now at peace and out of pain. Life will go on for you and I really hope that all those lovely memories will give you strength and heart to continue, just as Tony would have wanted you to, I'm sure.

Best Wishes

Sandra

****

We can't control the winds - but we can adjust our sails
User
Posted 07 Aug 2017 at 19:15

So sorry Eleanor for your loss , but always comforting to hear that there can be a calm and painless exit when the time comes , so thank you for sharing with us as ever.
The fried egg theory was a good read. I hope truly your white will spread in good time , and that the yolk won't seem such an ocean xxx

User
Posted 07 Aug 2017 at 21:41

Ruth ,

I am so late at catching up with your loss, please accept my belated condolences. Though Tony will now be at peace but you have to deal with all the issues which are left. You will I hope have lots of supportive friends to help you through and there are us bunch on here that try to do the same. Thinking of you at this time.

Edited by member 07 Aug 2017 at 21:42  | Reason: Not specified

User
Posted 08 Aug 2017 at 07:16

Thinking of you at this sad time
Best wishes
Debby

User
Posted 08 Aug 2017 at 12:10

I am so sorry to hear of your loss, I hope you can take some comfort that everyone on here is thinking of you

Take care
Viv
X

The only time you should look back is to see how far you have come
User
Posted 08 Aug 2017 at 12:53

So sorry to hear this and thinking of you. I want to thank you for sharing your journey on here.

User
Posted 08 Aug 2017 at 15:15
Just wanted to add my condolences Eleanor. I can only imagine how you must be feeling right now. I hope you're pain will start to ease as time goes on. Thinking about you.
Debbie x
User
Posted 08 Aug 2017 at 22:31

Such sad news, my sincere condolences.

Barry
User
Posted 09 Aug 2017 at 09:34

Ruth, I am so very sorry for your loss. Debbie xx

Debbie xxx
User
Posted 10 Aug 2017 at 12:19
I'm deeply sorry for your loss.
Thinking of you xx
User
Posted 10 Aug 2017 at 15:29

R


So sorry to hear of your loss, please accept my sincere condolences.


Thanks Chris


 

User
Posted 10 Aug 2017 at 17:40

So very sorry to hear of your loss. Please accept my sincerest condolences.

Regards

Clare

User
Posted 30 Aug 2017 at 20:36

Does this help? I've only copied and pasted it though


 


 


MY FRIEND JUST DIED. I DON’T KNOW WHAT TO DO.”


the grief cycle


ALRIGHT, HERE GOES. I’M OLD. WHAT THAT MEANS IS THAT I’VE SURVIVED (SO FAR) AND A LOT OF PEOPLE I’VE KNOWN AND LOVED DID NOT.


I’VE LOST FRIENDS, BEST FRIENDS, ACQUAINTANCES, CO-WORKERS, GRANDPARENTS, MOM, RELATIVES, TEACHERS, MENTORS, STUDENTS, NEIGHBORS, AND A HOST OF OTHER FOLKS. I HAVE NO CHILDREN, AND I CAN’T IMAGINE THE PAIN IT MUST BE TO LOSE A CHILD. BUT HERE’S MY TWO CENTS.


I wish I could say you get used to people dying. I never did. I don’t want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don’t want it to “not matter”. I don’t want it to be something that just passes.


My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can’t see.


As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.


In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function.


You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.


Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.


Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks.


~ by GSnow

Edited by member 30 Aug 2017 at 20:36  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 31 Aug 2017 at 09:55

Oops sorry that the link didn't work. Thanks Johsan!

Show Most Thanked Posts
User
Posted 05 May 2017 at 00:04

My heart is weeping for you - you will get through it, of course - everyone does - but my wish for you is that Tony's pain is managed as much as possible so that he can end his days quietly and peacefully with the woman he loves right beside him holding him safe. I once wrote on here about the difference between being torn away from this world and being gently lifted from it on a cloud of love and care; you have so much love to give him still x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 May 2017 at 06:24

I can't describe how I feel for you , and certainly can't top Lyns words. But I do remember Lyn saying to keep talking even when you think your partner can't hear. Because they can and will take comfort from your voice.

User
Posted 05 May 2017 at 06:54

In the distance I can feel your sorrow.

I'm so sad that you have come to this situation.

Thinking of you.

I really really wish it all develops ad less painful as possible for you both.

I also wish you get strength to undergo all this in a peaceful way..

Big hug from somebody in Spain who is also thankful to this friendly site.

Hug,

Lola

User
Posted 05 May 2017 at 07:25

Oh Eleanor (you'll always be Eleanor to me),

I don't often cry but my eyes are wet. The loving support that all of you who are our partners give us the courage to persist and endure.

David (my real name, a good Welsh name, although I haven't got an ounce of boyo in me, but I do love you Taffs, particularly Max Boyce)

User
Posted 05 May 2017 at 09:46

Thanks all. Your care for me means a heck of a lot.


x

User
Posted 05 May 2017 at 10:27
I don't post really on here but I have been following your posts since you arrived, my loved one being diagnosed shortly before your OH. You have given me immeasurable hope and strength and been a constant reminder to live in the present and to squeeze every drop of positive you can. I am so sorry you find yourselves here and wish you all strength and love in the time ahead.
User
Posted 05 May 2017 at 11:24

Eleanor, I don't post much at all now but have continued to follow your posts. I am so sorry to hear you have come to this point. As you say it is going to be so hard but there will still be memories to be made. Grab them when they happen and try to ignore all the unimportant  stuff. You have been so strong and you will get through this. I sadly know how hard it is. I'm glad you now have the support of the family. Make sure you use that support and take good care of yourself. Big hugs


Rosy xx

User
Posted 05 May 2017 at 11:59

Dear Eleanor,
I can't add anything either to what has already been expressed but I am thinking of you both and hoping that your lovely man and you find comfort in each other and that you will be able to talk together of the things that are important to you.

Love
Sandra

***

We can't control the winds - but we can adjust our sails
User
Posted 05 May 2017 at 13:51
Oh Eleanor,
Such sad news to read my heart goes out to you and Tony
. I am glad though that you know have been able to tell friends and family everyone needs a support network in such sad times. None of us know how long our journey will be or how difficult it will become but we are all behind you .
Sending love! Hugs! And one very much used and soggy comfort blanket.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 May 2017 at 16:03

Eleanor


My love and best wishes to you, Tony and all your loved ones.


Ulsterman

User
Posted 05 May 2017 at 18:42

Hi Ruth


Very best wishes to you and Tony.


Gordon

User
Posted 05 May 2017 at 19:53
Thinking of you and Tony.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 05 May 2017 at 21:21

Hi Ruth,

I have read your story and found your writing uplifting, warm and humorous. I can't begin to imagine how you are feeling but I am so sorry to read this news.

Regards

Clare

User
Posted 05 May 2017 at 22:43

Ruth,

So sorry you have reached this place, no comfort in that we all have this prospect at some point. Knowing you are there may at least focus you on what needs doing. You have the support now of your families and this will help so so much. It is hard to underestimate the difficulties of the next few weeks but you will find the strength and though we can do little to help you, our support is here. Thinking of you and Tony tonight.

User
Posted 06 May 2017 at 07:24
Eleanor

Sorry to hear where you are,just to say we are thinking of you both.

Thanks Chris
User
Posted 06 May 2017 at 08:24
I'm not good at putting feelings into words but just wanted you to know that I am thinking of you both.


Kevan

Edited by member 06 May 2017 at 08:26  | Reason: Not specified

User
Posted 06 May 2017 at 10:16

My god so sorry to hear this sad news--I've only been a member of this forum since March but your kind words re my situation have been really helpful. Can't believe how you can still share your concerns for others at what must be a very traumatic time for you. All I can do is send my love to you and Tony and hope you manage this situation as best you can.
Thinking of you both xx

User
Posted 06 May 2017 at 10:25
Ahhh my love care and support to you lovely lady. I hope you and Tony have time to chat and reflect, you both get the support you need.
User
Posted 06 May 2017 at 13:36

Oh Eleanor-Ruth, my heart goes out to you! I have trod this path ahead of you, as you know, but everyone has to do it for themselves and in their own way. You will find the way that is best for you. So glad you have told the family and are finding support there.

I am just about to go away for a few days and will probably be out of internet access, but will be thinking of you and getting in touch later on.

Marje

User
Posted 16 May 2017 at 16:33

I'm just typing this message to push this thread to the top of the recent messages in case Eleanor pops in so that she knows that we are thinking of her and Tony xxx

User
Posted 16 May 2017 at 16:57

Nice one sallyyy.

User
Posted 16 May 2017 at 17:24

We all think of them.

Let them know.

User
Posted 16 May 2017 at 21:12

Thanks Sally and all...really do appreciate all your thoughts and good wishes. Have been popping in occasionally to catch up on how people are doing but have been a bit too overwhelmed to contribute much. Hope to do so again soon - the forum remains a special and helpful place for me. And you are a special and helpful set of people!


The terminal prognosis has been a lot to get our heads around (odd since we knew that this was the destination we were heading for) and we are only just maybe/maybe not/tentatively sticking our heads out of the hamster hole and realising that it isn't actually over yet. We are getting superbly intelligent, compassionate and thoughtful support from the palliative care team. And Tony continues to be extraordinary.


E


xxx

User
Posted 16 May 2017 at 21:28

When you come here Eleanor it should be a time for taking, all your giving is now for Tony.

User
Posted 16 May 2017 at 22:38

Thinking about you Eleanor x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 May 2017 at 21:24
Ruth the old saying ! It's not over till it's over ! and certainly not until the Fat Lady Sings is so true . When any of us is handed the terminal card our first instinct is panick and terror , then we learn to live with the diagnosis ( it takes awhile ) but we do learn to live with it because staying in that terror moment is so draining .
Th second phase of emotion is what I call the hope acceptance stage where we understand the predicament we fully accept the reality of what is happening BUT we aren't giving up hope just yet.

I did a poem ages ago about the train journey ( apparently it's on page 2 ) (thank you Lyn) some of us take the scenic route with a few stops on the way and even a bit of sight seeing , others take the non stopper but all of us with the T ticket arrive at the same station .

Thinking of you X
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Jun 2017 at 13:23

Such beautiful words x

User
Posted 21 Jun 2017 at 20:41

Eleanor, just wondering how you are both doing?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Aug 2017 at 22:06
Eleanor,
Please accept my sincerest condolonces on the loss of your partner just over a month ago.
With your usual dignity you decided to share this sad news by quietly updating your profile.
Take care.
User
Posted 07 Aug 2017 at 14:57

This is terrible! How did we miss this? Eleanor, I am so, so sorry to know that Tony has gone and that a whole month has slipped by without us twigging - and there you have been, quietly supporting others and sharing your experience. You have such a good heart; my love and thoughts are with you xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Aug 2017 at 15:38

Thank you Mona, and Lyn.


Didn't want to post the news at the time. So many good people on this site fighting hard to stay positive in spite of all the horrors that this disease throws at them, I though I'd wait until I had a bit of perspective (probably several decades at this rate) rather than unleashing a flood of misery on all you kind souls. A couple of people guessed and have sent me messages so I haven't felt forgotten. And it's been good to read some of the recent updates from Julie, Paul and David, and others who have been so supportive of me.


The loss of my dear soulmate is as absolutely awful and painful as I thought it might be. No help for it I suppose. But at least Tony died at home and wasn't in pain, two aspects that will eventually be a huge comfort.


And I've learned some things that might be useful to others at some point - about palliative sedation, Dignitas and Exit, and about D-I-Y funerals. I'm currently learning, to my cost, about how not to do a probate application. And about the fried egg theory of grief: https://www.funeralzone.co.uk/help-resources/bereavement-support/the-grieving-process/tonkins-model-of-grief which seems to sum up my current state of despair but also to offer some future hope.


Would have been nicer to have been able to remain in ignorance but none of us have been given that choice sadly.


Love


Ruth / Eleanor


xxx


 


 


 

User
Posted 07 Aug 2017 at 15:40

Still sending love Eleanor. Tony was very lucky to have you - and I know you felt very lucky to have him xx

User
Posted 07 Aug 2017 at 16:16
I am so sorry to read of your loss, my sincere condolences

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 07 Aug 2017 at 17:55

Please accept my sincere condolences too Eleanor.

What a strong, brave wife you have been. The love of your life is now at peace and out of pain. Life will go on for you and I really hope that all those lovely memories will give you strength and heart to continue, just as Tony would have wanted you to, I'm sure.

Best Wishes

Sandra

****

We can't control the winds - but we can adjust our sails
User
Posted 07 Aug 2017 at 19:15

So sorry Eleanor for your loss , but always comforting to hear that there can be a calm and painless exit when the time comes , so thank you for sharing with us as ever.
The fried egg theory was a good read. I hope truly your white will spread in good time , and that the yolk won't seem such an ocean xxx

User
Posted 07 Aug 2017 at 21:41

Ruth ,

I am so late at catching up with your loss, please accept my belated condolences. Though Tony will now be at peace but you have to deal with all the issues which are left. You will I hope have lots of supportive friends to help you through and there are us bunch on here that try to do the same. Thinking of you at this time.

Edited by member 07 Aug 2017 at 21:42  | Reason: Not specified

User
Posted 08 Aug 2017 at 07:16

Thinking of you at this sad time
Best wishes
Debby

User
Posted 08 Aug 2017 at 10:32

Dear Ruth,

I am so sorry to read of your loss of your dear Tony. I can imagine how you are feeling now - it is now over seven years since I lost my husband, Mike, in similar circumstances.

The fried egg theory is a good one, I have always heard it referred to as 'balls in a jar' but it is similar. Initially the theory goes the grief is all-consuming but as you start to change your life the ball of grief reduces as other balls enter the jar.

As you say we are all different but if the fried egg theory has resonated with you you may take a similar route to me. I can say for me over time the grief has softened and little pockets of happiness started to creep in. Initially life had no purpose at all and I felt completely lost, but I hope it helps you to know that I am now almost always happy. I think of Mike often, he is really still, and always will be, a part of my life. But my memories have become comfortable and comforting. You may think this is impossible for you now, and it does take time, and as long as it takes, there is no timescale. But the overwhelming feelings you have now will reduce.

Initially there is so much to do, but slowly when I was ready I found I took up new interests and met new people. I also took up volunteering, which put some purpose back into life. It was really one foot in front of the other and several steps backwards to begin, but I am now fortunate to be living a good happy life, with Mike tucked away quietly in my heart forever.

I hope my story helps just a little to give you hope. Now your mind and body must be exhausted and you need to take care of you as you start to heal. Please take any offers of help, people like to help but don't always know what to do, and just little bits of practical help can help you so much.

I wish I could make it easier for you, but as I was told at a similar time, it is a tunnel we go through and eventually we reach the light at the other end.

Take care, Janet, x

User
Posted 08 Aug 2017 at 12:10

I am so sorry to hear of your loss, I hope you can take some comfort that everyone on here is thinking of you

Take care
Viv
X

The only time you should look back is to see how far you have come
User
Posted 08 Aug 2017 at 12:53

So sorry to hear this and thinking of you. I want to thank you for sharing your journey on here.

User
Posted 08 Aug 2017 at 15:15
Just wanted to add my condolences Eleanor. I can only imagine how you must be feeling right now. I hope you're pain will start to ease as time goes on. Thinking about you.
Debbie x
User
Posted 08 Aug 2017 at 20:48
Oh Ruth,
You knew I would be here sooner or later and so here I am just another wife with nothing much to offer in practical terms . I can't make the pain any Less, I can't make the out come any different but I have a huge heart and pretty big ears to listen . Oh and of course a ginormous pile of comfort blankets to drape you in .

Thank you so much for the links and I totally get the egg anology I also loved Janet's post which also gave me comfort and I hope it did for you as well .

Grief has no limits on time / emotion / or how any one deals with it we are all different, we can only get through it as best we can . What ever feels right Is right .

Grief is a journey for some the journey is short and we are able to get to the light at the end of the tunnel withought to many grief stops
For others the journey takes longer and we think we are at the right stop and we try to get off but it isn't our stop .
Sometimes we think we can't get of the train but then suddenly the light says hey this is your stop.
Grief is such a strange journey sometimes we don't know we have alighted from the platform until we have arrived .

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Aug 2017 at 22:31

Such sad news, my sincere condolences.

Barry
User
Posted 09 Aug 2017 at 09:34

Ruth, I am so very sorry for your loss. Debbie xx

Debbie xxx
User
Posted 10 Aug 2017 at 12:19
I'm deeply sorry for your loss.
Thinking of you xx
User
Posted 10 Aug 2017 at 15:29

R


So sorry to hear of your loss, please accept my sincere condolences.


Thanks Chris


 

User
Posted 10 Aug 2017 at 17:40

So very sorry to hear of your loss. Please accept my sincerest condolences.

Regards

Clare

User
Posted 11 Aug 2017 at 22:02

You have a heart the size of a football stadium Julie, and enough empathy to fill several olympic-sized swimming pools. Plus a ton of wisdom. Thank you for all of those things...


I've been reading a pile of stuff about grief, and have just ordered another load of memoirs of people who have been through it and are still standing. I have this notion that if I can just find the right words, something that accurately expresses how this grief feels, it will somehow be easier to live with it, to let it be. I'm so used to being able to explain things, to communicate how I'm feeling, that my current incoherence feels like choking. Battered with emotion but no words to pin it down / hold it steady while I brace myself for the next onslaught.


Part of me suspects that I'm just p*ssing in the wind however! Seems unlikely that a couple of well-written, well-observed sentences will stop the storm. But here's a starter for 10 from Jamie Anderson...


"Grief, I’ve learned, is really love. It’s all the love you want to give but cannot give. The more you loved someone, the more you grieve. All of that unspent love gathers up in the corners of your eyes and in that part of your chest that gets empty and hollow feeling. The happiness of love turns to sadness when unspent. Grief is just love with no place to go.


It’s taken me seven years to realize that my grief is my way of telling the great vastness that the love I have still resides here with me. It won’t stop. That’s how love goes."


Hugs and strength to you and to all of us.


Ruth/Eleanor


x

User
Posted 11 Aug 2017 at 22:16

Thank you so much Janet - it's a huge help to know that pockets of happiness will eventually start to return to my life.


I'm in that 'what's the point of anything' state of physical and emotional exhaustion right now but I know that I have an amazing pool of people and possibilities in my life that will sooner or later give me back a sense of purpose and meaning. No way of hurrying things up though. It's hard to just sit still and allow the grief to be whatever it needs/wants to be, particularly when it's all so painful. But that's the only option I guess.


Thanks for shining a light.


Love


Ruth / Eleanor


x

 
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