The waiting is the hardest bit
Discussion
I am left thinking about all of this today. It was very difficult coming home on Tuesday night. It's been so long i've even forgotten my own home telephone number. But it's good to be home. I slept in our own bed and that was very welcome too. I am surrounded by Lily's life and that's actually not as hard as I thought it would be. I thought I could not give things away, but actually, there are things I want to give to others that will mean a great deal to them.
What can I say? I'm glad the feeding stuff and meds is almost out the way. It's been an invader in our lives and when it's all gone it will be a blessed relief. Odd thing is I cannot bear to touch the traccy stuff. Too many memories of having to do it ourselves.
Oh well, my girl is home with me now. I feel her here. Funny thing is I don't even think about her body, it's not important at all. Odd that. Lily;'s spirit is here with me and that's the only thing that matters.
What can I say? I'm glad the feeding stuff and meds is almost out the way. It's been an invader in our lives and when it's all gone it will be a blessed relief. Odd thing is I cannot bear to touch the traccy stuff. Too many memories of having to do it ourselves.
Oh well, my girl is home with me now. I feel her here. Funny thing is I don't even think about her body, it's not important at all. Odd that. Lily;'s spirit is here with me and that's the only thing that matters.
Thank you for all your replies and kind kind comments over the last few days and weeks. I am calmer now and off to bed in a few minutes. But before I go I wanted to write something about life and the human spirit.
You never know what is around the corner and you never know how you are going to handle it. If someone had told me seven months ago, the Saturday night before that fateful Sunday when Lily started coughing up blood that we could manage such a hard and dangerous journey, I would have said in all honesty i'm not sure. But truth of it is, when you start upon the journey yourself, you do find it in yourself. There are many readers to this thread who have been through, or who are perhaps on similar journeys themselves. Perhaps the only difference between me and them is that in some weird and wonderful way, when I get on a keyboard I can express myself in a way that is a bit different to others. That's all.
I watched Lily go through cancer with an extraordinary grace. I watched her battle with appalling odds and deadly or crippling situations that seemed to occur with a scary regularity. Yet in watching her, I learned and understood how she did it and in that I understood how she made it easy for me. Lily's greatest skills in our adventure were those of adaptability and flexibility. Lily never ever mourned what was lost, she never wondered 'what if', or spent even a nanosecond feeling angry or saying 'why me' or 'what if'. It is what it is, she said and she said it on many occasions and even when those around her found it very hard to watch she never flinched in her resolve and determination to live every day to its very best. She used to say to me that in life you have to be flexible - have purpose, passion and ambition, but never be so fixed, so rigid that if the first way does not work, you beat yourself up or give up. Find a way that works for you.
Over many years I have told Lily many stories - I am in part a night-time teller of tales of kinder places and softer characters, of which I have quite literally thousands of stories. Perhaps allow me the one time indulgence of telling you the story I told Lily when she was in her last few days after New Years eve.
Once upon a time there was a man and woman walking upon a road. They came to a part of the road where there was a choice of paths. The path to the left was clear and bright, broad and well worn with the passing of many feet. It was comfortable and it was easy and in truth held few surprises. Then there was the path to the right. It led through shadows and it led through light. The path was winding, up hill and down dale and there were parts of silence and brooding danger. it was an uneasy path that the less brave would hesitate to walk. The man in truth was a little anxious. He was not sure he could walk the harder path. He could see the bright, but he could see also the dark shadows and forboding and he wondered if he was strong enough to make the journey. Then deep from within he reached and found his courage and said OK, lets go. The easier path is too dull he said and then she said the thrill is in the ride..... And then she took a different path.
For instead of turning left or right, she forged ahead. Pulling the bushes apart she found a new path, unwalked and untouched. And upon it they walked. Sometimes the path was soft grass and sometimes it was hard stones. Sometimes he led, finding the way. Sometimes she strode ahead resolute. Most of the time they walked together, hand in hand, enjoying the steps of a path never before travelled...
Lily told me many years ago that life is too boring to walk the path most travelled and the path less travelled was a path already travelled by others ... so why not forge your own path? Lily lived like that. She had a very hard life at times and yet in all of her difficulties she remained unbowed. Her story is perhaps no different to many others, no less or no more extraordinary than many others, but in the telling of a story of a life travelled hard, I have learned a little more about life. No preaching, no eulogy intended, just an ever deepening understanding that attitude and belief makes the difference between drowing under the tsunami or surfing the wave of a lifetime. Lily believed in freedom of mind, it was the fire in her blood, it was her true passion. She believed it, she lived it and she died with that belief burning deep within her heart.
I will write no more of this. Our cancer adventure is now told. I am writing the final words of a journey embraced with both hands. When Lily put her hand into mine on our wedding day she locked into my left hand someting that will never die. She steadied me for all time. It is more than love, it is more than life itself. It is about being soulmates. And that is the word upon which I shall stop. Soulmates.
You never know what is around the corner and you never know how you are going to handle it. If someone had told me seven months ago, the Saturday night before that fateful Sunday when Lily started coughing up blood that we could manage such a hard and dangerous journey, I would have said in all honesty i'm not sure. But truth of it is, when you start upon the journey yourself, you do find it in yourself. There are many readers to this thread who have been through, or who are perhaps on similar journeys themselves. Perhaps the only difference between me and them is that in some weird and wonderful way, when I get on a keyboard I can express myself in a way that is a bit different to others. That's all.
I watched Lily go through cancer with an extraordinary grace. I watched her battle with appalling odds and deadly or crippling situations that seemed to occur with a scary regularity. Yet in watching her, I learned and understood how she did it and in that I understood how she made it easy for me. Lily's greatest skills in our adventure were those of adaptability and flexibility. Lily never ever mourned what was lost, she never wondered 'what if', or spent even a nanosecond feeling angry or saying 'why me' or 'what if'. It is what it is, she said and she said it on many occasions and even when those around her found it very hard to watch she never flinched in her resolve and determination to live every day to its very best. She used to say to me that in life you have to be flexible - have purpose, passion and ambition, but never be so fixed, so rigid that if the first way does not work, you beat yourself up or give up. Find a way that works for you.
Over many years I have told Lily many stories - I am in part a night-time teller of tales of kinder places and softer characters, of which I have quite literally thousands of stories. Perhaps allow me the one time indulgence of telling you the story I told Lily when she was in her last few days after New Years eve.
Once upon a time there was a man and woman walking upon a road. They came to a part of the road where there was a choice of paths. The path to the left was clear and bright, broad and well worn with the passing of many feet. It was comfortable and it was easy and in truth held few surprises. Then there was the path to the right. It led through shadows and it led through light. The path was winding, up hill and down dale and there were parts of silence and brooding danger. it was an uneasy path that the less brave would hesitate to walk. The man in truth was a little anxious. He was not sure he could walk the harder path. He could see the bright, but he could see also the dark shadows and forboding and he wondered if he was strong enough to make the journey. Then deep from within he reached and found his courage and said OK, lets go. The easier path is too dull he said and then she said the thrill is in the ride..... And then she took a different path.
For instead of turning left or right, she forged ahead. Pulling the bushes apart she found a new path, unwalked and untouched. And upon it they walked. Sometimes the path was soft grass and sometimes it was hard stones. Sometimes he led, finding the way. Sometimes she strode ahead resolute. Most of the time they walked together, hand in hand, enjoying the steps of a path never before travelled...
Lily told me many years ago that life is too boring to walk the path most travelled and the path less travelled was a path already travelled by others ... so why not forge your own path? Lily lived like that. She had a very hard life at times and yet in all of her difficulties she remained unbowed. Her story is perhaps no different to many others, no less or no more extraordinary than many others, but in the telling of a story of a life travelled hard, I have learned a little more about life. No preaching, no eulogy intended, just an ever deepening understanding that attitude and belief makes the difference between drowing under the tsunami or surfing the wave of a lifetime. Lily believed in freedom of mind, it was the fire in her blood, it was her true passion. She believed it, she lived it and she died with that belief burning deep within her heart.
I will write no more of this. Our cancer adventure is now told. I am writing the final words of a journey embraced with both hands. When Lily put her hand into mine on our wedding day she locked into my left hand someting that will never die. She steadied me for all time. It is more than love, it is more than life itself. It is about being soulmates. And that is the word upon which I shall stop. Soulmates.
Thank you.
Perhaps strange to say, not the hardest day at all compared to some. Funny really, the night before was pertty tough re-reading my words many times and a sleep filled with turbulent and very emotional dreams.
Yesterday was beautiful and I am so pleased - if made me smile just looking at Lily's casket with its vibrant reds and golds. I would not have cried but for that Eric Clapton song - lovely and emotional memories..
Thank you both and John for coming. There were people represented from so many parts of Lily's life and to have PH there represented in body as well as spirit was a great comfort. PH has been such a support over the last few months - in many dark and tear filled days, the wonderful people here have been a true comfort.
In many ways the last few months are beginning to feel like the 'past'. Lily was very clever - she knew exactly how to support me throughout this and let me have the space and voice to say what I needed to say and do. I don't have any regrets and I don't feel a great burden of grief. I feel calm - of course sad and there is much adjustment to do, but I also feel very positive about the future. In a little while, when I have sorted out the admin chaos of the last last six months and put things away and given things away and stored treasured memories, I wlll go back to doing what Lily and I did so well.
Of course life will be different without Lily. But I feel that yesterday was not about closing a chapter on a part of my life, it was about opening a new one and in that I am very excited. A life alone does not have to be a lonely life - I have too much to do to be lonely and too much to get on with. There will be difficult days, of that I am sure, but there will also be days of fun and happiness and days when life will not always be about loss and sadness. To do anything else, to become maudlin and to keep thinking about what I have lost will be time not well spent.
One of Lily's favourite songs was by a hugely influential Iranian singer called Dariush Egbhali. His songs kept Lily live alive throught the revolution and the war and all the chaos that followed. One of his songs is called Zendonie and it is a song about life being a prison and in effect the greatest prisons are the ones we create for ourselves. Many years ago Lily broke through these prison walls and lived her life to the full. No matter what happened, life could never break her.
The last eight months have changed me so much - in ways I never thought possible. It's been a rollercoaster in every sense - the words I have written in my late night postings have been but the tiniest fraction of what it has really been like - certainly towards the end when the daily onslaught of medical crises and events was really a tidewave. Yet in all of this I learned something that has taken me a lifetime to learn - and something that Lily told me about many years ago and something that at times I found so hard to do. It is about living in the now. You can't spend your life mourning the past, you can't spend your life worrying about 'the future', you just have now. Hard way to learn and really understand, but I do... now.
In this life I have been blessed, in a thousand different ways. I have been blessed having parents who have been stable and are as loving today as they were sixty years ago - they taught me how to be in a stable relationship. not with words but by their actions and for that I shall be always grateful. And of course I have been blessed to have Lily, who taught me so very much in so many different ways.
But i'll share one last thought with you about all of this. When it all started I made a conscious decision that what ever happened we were going to learn from it. It was our big adventure - it still is, because the learning never does stop. But I went into it with eyes wide open, with an open mind and and open heart, with no prejudice and no perceptions. We also had a great trust in our relationship and knowing that we had each other to bolster us... it was more than enough.
Cancer for us was never about 'win' or 'lose', it was about more than that. Taking just the clinical aspects it's a disease process and knowing that took away any sting that it could have had. We never had the 'cancer monster' to plague our nightmares or the PTSD that so many feel. We knew there would be difficult days (and some much harder than many we had ever imagined). but we never lost sight of what we were doing and how we were doing it. The emotional aspects for me were very hard at times - there are no words to describe how it feels to watch crisis after crisis, but after a short while I learned to handle things very quickly and process my thoughts and emotions - to cry, to grieve, to sometimes feel the overwhelming waves of nausea that goes with extreme exhaustion and stress... that to was just a process that I accepted and knew that it was something that was part of me and could not and should not be denied - it was the 'how' in how I got through it.
There are no rights and wrongs in all of this. Yesterday it made me laugh at the number of people who told me to 'be strong'... alas, i've still no idea what so ever as to what that means. Perhaps what they are trying to say is keep the love.. and if that is, then yes, I will be strong. I mean, what else could I do? You've read all of this, you've been there since the beginning, if there wasn't love, then none of this would have come to pass. So be strong will be substituted with 'keep the love' and in that i'm with Lily.. unbreakable.
Thanks for reading this tread over the last few months. Thanks for your support. Thanks for all your incredibly kind, generous and supportive words, actions and deeds. Thank you for turning up at the hospice and giving Lily one last ride and us one last chance to be host, for raising a pile of cash... for everything.
But thanks for... for being you. It's all you had to do and in truth it was more than enough.
Lily and Russell
Perhaps strange to say, not the hardest day at all compared to some. Funny really, the night before was pertty tough re-reading my words many times and a sleep filled with turbulent and very emotional dreams.
Yesterday was beautiful and I am so pleased - if made me smile just looking at Lily's casket with its vibrant reds and golds. I would not have cried but for that Eric Clapton song - lovely and emotional memories..
Thank you both and John for coming. There were people represented from so many parts of Lily's life and to have PH there represented in body as well as spirit was a great comfort. PH has been such a support over the last few months - in many dark and tear filled days, the wonderful people here have been a true comfort.
In many ways the last few months are beginning to feel like the 'past'. Lily was very clever - she knew exactly how to support me throughout this and let me have the space and voice to say what I needed to say and do. I don't have any regrets and I don't feel a great burden of grief. I feel calm - of course sad and there is much adjustment to do, but I also feel very positive about the future. In a little while, when I have sorted out the admin chaos of the last last six months and put things away and given things away and stored treasured memories, I wlll go back to doing what Lily and I did so well.
Of course life will be different without Lily. But I feel that yesterday was not about closing a chapter on a part of my life, it was about opening a new one and in that I am very excited. A life alone does not have to be a lonely life - I have too much to do to be lonely and too much to get on with. There will be difficult days, of that I am sure, but there will also be days of fun and happiness and days when life will not always be about loss and sadness. To do anything else, to become maudlin and to keep thinking about what I have lost will be time not well spent.
One of Lily's favourite songs was by a hugely influential Iranian singer called Dariush Egbhali. His songs kept Lily live alive throught the revolution and the war and all the chaos that followed. One of his songs is called Zendonie and it is a song about life being a prison and in effect the greatest prisons are the ones we create for ourselves. Many years ago Lily broke through these prison walls and lived her life to the full. No matter what happened, life could never break her.
The last eight months have changed me so much - in ways I never thought possible. It's been a rollercoaster in every sense - the words I have written in my late night postings have been but the tiniest fraction of what it has really been like - certainly towards the end when the daily onslaught of medical crises and events was really a tidewave. Yet in all of this I learned something that has taken me a lifetime to learn - and something that Lily told me about many years ago and something that at times I found so hard to do. It is about living in the now. You can't spend your life mourning the past, you can't spend your life worrying about 'the future', you just have now. Hard way to learn and really understand, but I do... now.
In this life I have been blessed, in a thousand different ways. I have been blessed having parents who have been stable and are as loving today as they were sixty years ago - they taught me how to be in a stable relationship. not with words but by their actions and for that I shall be always grateful. And of course I have been blessed to have Lily, who taught me so very much in so many different ways.
But i'll share one last thought with you about all of this. When it all started I made a conscious decision that what ever happened we were going to learn from it. It was our big adventure - it still is, because the learning never does stop. But I went into it with eyes wide open, with an open mind and and open heart, with no prejudice and no perceptions. We also had a great trust in our relationship and knowing that we had each other to bolster us... it was more than enough.
Cancer for us was never about 'win' or 'lose', it was about more than that. Taking just the clinical aspects it's a disease process and knowing that took away any sting that it could have had. We never had the 'cancer monster' to plague our nightmares or the PTSD that so many feel. We knew there would be difficult days (and some much harder than many we had ever imagined). but we never lost sight of what we were doing and how we were doing it. The emotional aspects for me were very hard at times - there are no words to describe how it feels to watch crisis after crisis, but after a short while I learned to handle things very quickly and process my thoughts and emotions - to cry, to grieve, to sometimes feel the overwhelming waves of nausea that goes with extreme exhaustion and stress... that to was just a process that I accepted and knew that it was something that was part of me and could not and should not be denied - it was the 'how' in how I got through it.
There are no rights and wrongs in all of this. Yesterday it made me laugh at the number of people who told me to 'be strong'... alas, i've still no idea what so ever as to what that means. Perhaps what they are trying to say is keep the love.. and if that is, then yes, I will be strong. I mean, what else could I do? You've read all of this, you've been there since the beginning, if there wasn't love, then none of this would have come to pass. So be strong will be substituted with 'keep the love' and in that i'm with Lily.. unbreakable.
Thanks for reading this tread over the last few months. Thanks for your support. Thanks for all your incredibly kind, generous and supportive words, actions and deeds. Thank you for turning up at the hospice and giving Lily one last ride and us one last chance to be host, for raising a pile of cash... for everything.
But thanks for... for being you. It's all you had to do and in truth it was more than enough.
Lily and Russell
Hammer67 said:
Russell, this thread has been both difficult to read and impossible to ignore. I may be about to embark on a similar journey with Mrs H67 who has found something that shouldn`t be there. Christ I hope it doesn`t happen, but you and Lily have shown me what matters and should I need it this thread and your words will be my touchstone.
H67.
Hammer67, I hope that this is just little more than a slight bump in the road for you are your lady. Perhaps at the moment your lady has the best approach - telling people now may well make it much harder for you to handle all their issues as well as both your own.H67.
If you need to talk - if I can help in any way at all, please do not hesitate to email me. Not sure what I can do other than listen, but I have big, big ears.
All the very best,
Russell
OK mostly. Having trouble motivating myself at the moment. There is lots I could or should be doing, but it;s proving hard to do.
I'm not going to be too hard on myself... yet!
I watched my wedding video yesterday which, well to put it mildly was a hugely emotional experience, but also very pleasing. Jason, my friend who made it did a cracking job and I have something truly precious.
I feel very quiet at times - not wanting to talk to anyone at all. Home feels.. well like home really. I'm also chewing over writing a book, though in truth i'm still very much at the 'what's the point / who's it for stage'. What I do know is that if I do write it, I won't dilute it (thanks Brad). Lots to do, lots I should be doing. I know, early days and all that.
Thanks for asking.
I'm not going to be too hard on myself... yet!
I watched my wedding video yesterday which, well to put it mildly was a hugely emotional experience, but also very pleasing. Jason, my friend who made it did a cracking job and I have something truly precious.
I feel very quiet at times - not wanting to talk to anyone at all. Home feels.. well like home really. I'm also chewing over writing a book, though in truth i'm still very much at the 'what's the point / who's it for stage'. What I do know is that if I do write it, I won't dilute it (thanks Brad). Lots to do, lots I should be doing. I know, early days and all that.
Thanks for asking.
I had not intended to post any more on my thoughts on this thread. But there has been a lot going through my head recently and this is as good a place as any to lay it down.
It is almost three weeks since Lily died. Not quite, but almost. In that time lots of things have happened... of course we had a cremation and lots of people have said lots of lovely things. I have seen and spoken to many sad people who seem genuinely at a loss as to how to begin expressing their own thoughts let alone being able to express themselves to me. Not so many 'be strong's .. anymore, more just people at a loss as to what to say.
Well it's to be expected I suppose. For many people I guess it's in many respects no different to a sudden loss - because we did not tell them that Lily was ill.
I realised several days ago that for the moment life has come to a bit of a stop. OK, I said to myself, this is all 'normal' and part and parcel of grief and then I said to myself.. yes, but hang on a sec, you are not doing the constantly crying, or ranting or 'making deals' with who ever. In fact you're not doing that much at all. And then, perhaps over a little time it slowly dawned on me and in truth it still is; I'm waiting... not sure what i'm waiting for actually, just the brain seems to be waiting. Don't get me wrong, I know Lily isn't going to come through the door... the beauty of cremation is that mentally it completely closes EVERY door to that thought - it's brilliant for that, it's something else. It's waiting for the 'what next'.. The what am I supposed to do next. So here I sit.. waiting for a mental cue as to what to do next. And I wonder, will it come from inside? Will it be the brain that says 'get up russell, you need to do things and move on..' or will it be something else that says 'sit a while longer, compose yourself, gather your thoughts, write lists of things to do and places to go and people to see..'
You see, in all of the frenetic chaos of the last eight months, there was little or no time to think or do anything, other than live (because 'survive' was never enough for us) with as much love and dignity as possible. The love is still there, there is no longer any pain, anything to 'do' at all, but the brain still sits here waiting for the next onslaught.. the next thing to be processed quickly.
I feel like a car idling - you know those rare occasions where you see a car left on the street, engine on defrosting whilst the driver finishes off his tea and toast in the morning. It's an odd sight, slightly disconcerting, maybe even a little uncomfortable to walk past, to be around, without not really knowing why. Funny that, after all of this, after all I have been through, i'm still waiting. Funny that.
It is almost three weeks since Lily died. Not quite, but almost. In that time lots of things have happened... of course we had a cremation and lots of people have said lots of lovely things. I have seen and spoken to many sad people who seem genuinely at a loss as to how to begin expressing their own thoughts let alone being able to express themselves to me. Not so many 'be strong's .. anymore, more just people at a loss as to what to say.
Well it's to be expected I suppose. For many people I guess it's in many respects no different to a sudden loss - because we did not tell them that Lily was ill.
I realised several days ago that for the moment life has come to a bit of a stop. OK, I said to myself, this is all 'normal' and part and parcel of grief and then I said to myself.. yes, but hang on a sec, you are not doing the constantly crying, or ranting or 'making deals' with who ever. In fact you're not doing that much at all. And then, perhaps over a little time it slowly dawned on me and in truth it still is; I'm waiting... not sure what i'm waiting for actually, just the brain seems to be waiting. Don't get me wrong, I know Lily isn't going to come through the door... the beauty of cremation is that mentally it completely closes EVERY door to that thought - it's brilliant for that, it's something else. It's waiting for the 'what next'.. The what am I supposed to do next. So here I sit.. waiting for a mental cue as to what to do next. And I wonder, will it come from inside? Will it be the brain that says 'get up russell, you need to do things and move on..' or will it be something else that says 'sit a while longer, compose yourself, gather your thoughts, write lists of things to do and places to go and people to see..'
You see, in all of the frenetic chaos of the last eight months, there was little or no time to think or do anything, other than live (because 'survive' was never enough for us) with as much love and dignity as possible. The love is still there, there is no longer any pain, anything to 'do' at all, but the brain still sits here waiting for the next onslaught.. the next thing to be processed quickly.
I feel like a car idling - you know those rare occasions where you see a car left on the street, engine on defrosting whilst the driver finishes off his tea and toast in the morning. It's an odd sight, slightly disconcerting, maybe even a little uncomfortable to walk past, to be around, without not really knowing why. Funny that, after all of this, after all I have been through, i'm still waiting. Funny that.
RaeB said:
Maybe it will soon be time to get that bottomless bowl of punch out and celebrate life with one of those infamous parties Russell? Fill the house with laughter and joy, fresh flowers, music, a nod to the past and a toast to the future.
I don't think i'm ready for a party, but certainly in the summer, when I can open the house up and have a big barbie I will definately do that.. it really was a bottomless bowl of punch and i've not forgotten how to make it!I think that will be a good thing to do - celebrate somewhere near our birthdays in August.
Fresh flowers... interesting thought... it's new year soon and i'm going to put up a Sofreh this year for Lily.. March 21. Start of the New Year, new beginnings. Lily will be very happy to know I am doing this.
Strange this internet world of ours, that we can 'know' a name and yet not know anyone at all. Perhaps it's no differerent to working in big offices 'you know Jones on the 10th floor died last week...'. and you acknowledge it, not really knowing who Jones is/was.
Slowly the mind begins to accept things that are not really palatable. Time moves forwards quickly and life takes on a different focus day by day. I am relieved of one thing and that is the family are going to have no cheleh( farsi for the end of 40 days of mourning). Good, Lily would have hated it. No black at the funeral, no big boquets of flowers to morn a life lost and no one to 'officially' wear black for a period of recognised mourning. Good. It has its uses and it makes it easier - certainly for the older generations, but for me it was always going to be something I did not want to have to go through.
More later. I'm fine.. mostly. Quiet at the moment, lots to think about and lots to process which is not a bad thing. Tomorrow will be a fuller day, or day of moving forwards. I've given myself a few days 'off'. Now the brain has said enough, time to move on. And so it shall. Off to our palce of work soon.. now that's going to be interesting.. first time with Lily not there. I take comfort from the fact I shall be surrounded by all her artwork. I've been thinking about another exhibition for her work, about time people more people got to see the cancer monster isn't a monster after all.
Slowly the mind begins to accept things that are not really palatable. Time moves forwards quickly and life takes on a different focus day by day. I am relieved of one thing and that is the family are going to have no cheleh( farsi for the end of 40 days of mourning). Good, Lily would have hated it. No black at the funeral, no big boquets of flowers to morn a life lost and no one to 'officially' wear black for a period of recognised mourning. Good. It has its uses and it makes it easier - certainly for the older generations, but for me it was always going to be something I did not want to have to go through.
More later. I'm fine.. mostly. Quiet at the moment, lots to think about and lots to process which is not a bad thing. Tomorrow will be a fuller day, or day of moving forwards. I've given myself a few days 'off'. Now the brain has said enough, time to move on. And so it shall. Off to our palce of work soon.. now that's going to be interesting.. first time with Lily not there. I take comfort from the fact I shall be surrounded by all her artwork. I've been thinking about another exhibition for her work, about time people more people got to see the cancer monster isn't a monster after all.
Funny day here... a lovely lunch with friends and then a diner in memory of Lily... and then home...
So here's me, in a Pooh bear moment sitting with my life spread out over the living room floor. What life I hear you say ..
Well, my beautiful brides wonderful wedding dress, the dried flowers, the baloons, traccy jewellery and a host of other things besides..
.. and the Christmas cards and assorted other Christmassy things ..
... and all the flowers and service and cards from the funeral and boxes to put things away in...
.... My life of the last few months, spread out over the living room floor. Weeks and months compressed into a few moments of turning left and right to look about.
No more waiting for 'something'- that feeling stopped yesterday morning and now it's about moving on with a purpose. Organise, sort out, file away, give away, throw away. A lifetime of precious memories to be sorted and worked through.
So here's me, in a Pooh bear moment sitting with my life spread out over the living room floor. What life I hear you say ..
Well, my beautiful brides wonderful wedding dress, the dried flowers, the baloons, traccy jewellery and a host of other things besides..
.. and the Christmas cards and assorted other Christmassy things ..
... and all the flowers and service and cards from the funeral and boxes to put things away in...
.... My life of the last few months, spread out over the living room floor. Weeks and months compressed into a few moments of turning left and right to look about.
No more waiting for 'something'- that feeling stopped yesterday morning and now it's about moving on with a purpose. Organise, sort out, file away, give away, throw away. A lifetime of precious memories to be sorted and worked through.
Today I collected Lily's wedding dress from her sister. It had been with her since the 22nd of November when she took it back from the hospital. The other bits and pieces of clothing including the veil and traccy jewellery I made have been home in a hat box since then.
When I picked up Lily's dress this afternoon for the first time and put lay it on the dried wedding flowers I felt a depth of utter grief that it's hard to express in words. I sat there for hours just surrounded by the chaos and multitude of paraphenalia of the last few months and a three inch stack of writings since the day that Lily had her traccy. I sat there reading some of them and I sat there holding Lily's dress and cried yet more tears. But nothing I touched or felt was as anything until the moment when I opened the hat box and there was her veil and jewellery. The smell of Lily's perfume, encapsulated in it's own little two month time capsule was like being hit by a freight train of emotion.
And there is still chaos surrounding me... but it gets easier. I have placed these precious things in a box, that I painted earlier beautiful golds and purples and in doing so I put fast precious love; to be opened again when time and mood has a rich patina of joy and no more tears and warm wine to make the opening the more pleasurable.
Tuesday next week will make 5 weeks since Lily died - tomorrow (obviously!) four weeks. It has been a strange time in my life, to say the least. Yet in my grief and sadness I am learning that love itself cannot be broken by grief, that love surrounds spilled tears with unbroken shimmering light.
Early next week will be our 23rd anniversary. I think I would like to celebrate this with a bottle of champagne and the company of close friends ... and take from a translation of the Rubaiyat, a verse so apt to me now
... For some we loved, the loveliest and best
That from His rolling vintage Time has pressed,
Have drunk their glass a round or two before,
And one by one crept silently to rest ...
(but in Lily's case, perhaps less of the silent, more of a bloomin good knees up and the stereo on 11)
Yes it does get easier and yes, the smiles and the humour does come more freely. Putting things away is without doubt the hardest thing to do, yet in doing it alone the brain finally begins to accept that life moves on and I don;t know why, but I have a funny feeling that it's going to be a very exciting and very busy life indeed.
When I picked up Lily's dress this afternoon for the first time and put lay it on the dried wedding flowers I felt a depth of utter grief that it's hard to express in words. I sat there for hours just surrounded by the chaos and multitude of paraphenalia of the last few months and a three inch stack of writings since the day that Lily had her traccy. I sat there reading some of them and I sat there holding Lily's dress and cried yet more tears. But nothing I touched or felt was as anything until the moment when I opened the hat box and there was her veil and jewellery. The smell of Lily's perfume, encapsulated in it's own little two month time capsule was like being hit by a freight train of emotion.
And there is still chaos surrounding me... but it gets easier. I have placed these precious things in a box, that I painted earlier beautiful golds and purples and in doing so I put fast precious love; to be opened again when time and mood has a rich patina of joy and no more tears and warm wine to make the opening the more pleasurable.
Tuesday next week will make 5 weeks since Lily died - tomorrow (obviously!) four weeks. It has been a strange time in my life, to say the least. Yet in my grief and sadness I am learning that love itself cannot be broken by grief, that love surrounds spilled tears with unbroken shimmering light.
Early next week will be our 23rd anniversary. I think I would like to celebrate this with a bottle of champagne and the company of close friends ... and take from a translation of the Rubaiyat, a verse so apt to me now
... For some we loved, the loveliest and best
That from His rolling vintage Time has pressed,
Have drunk their glass a round or two before,
And one by one crept silently to rest ...
(but in Lily's case, perhaps less of the silent, more of a bloomin good knees up and the stereo on 11)
Yes it does get easier and yes, the smiles and the humour does come more freely. Putting things away is without doubt the hardest thing to do, yet in doing it alone the brain finally begins to accept that life moves on and I don;t know why, but I have a funny feeling that it's going to be a very exciting and very busy life indeed.
Today would have been our 23rd anniversary. When Lily died, this day and our birthdays were always the ones that I dreaded.
Over the last few weeks I have been slowly putting stuff away, throwing stuff away and finally, having put away precious memories of the wedding, christmas and the funeral, I am left with clothes.
How hard it has become to let go of even the oldest things - t-shirts that are worn to rags, yet retain the memmory of past days, of something as mundane as the days digging the garden together, or painting the house when we first bought it. I say to myself, if everything is precious then nothing is precious, so I am left with the clothes of Lily that mean the most, her wedding dress, the shirt she wore the day the corvettes came, her hat, the suit she went to her Ph.D. graduation in.. the list is long and is still enough to fill a wardrobe.
Yet in all of this, on this day, our anniversary there is also a stillness and a calmness to the day. I can feel Lily telling me to move on and increase the pace of life, that her 'mourning' is now over and now it's time to move on and pick up the pace of life again.
yet in all of this there is also something else. I feel, at least in part like a one way mirror, that my reflection is no longer there. It's a strange thing this - it's about trying to reconcile physical and emotional loss whilst keeping Lily alive and strong inside of me. There is still so much to tidy away. By the end of this I will have over 20 bin liners of clothes to give to the hospice charity shop, yet the one thing I cannot bare touching, even now, especially now, today, is Lily's handbag. What is it with womens handbags... sacred item indeed. She may not be here in any way shape or form, yet to go near her bag feels like the worst kind of intrusion - dare I say it a violation. Funny really.
I still have her old saab 900 convertible sitting on the drive. It's been there a while and I have been faced with a choice as to get it fully restored or sell it / scrap it. Lily would not let me part with it - it was her P&J and so 'her'. Yet I think I have found the trade off. I think Lily would forgive me letting go the saab if I replaced it with a Corvette. It seems a fair exchange and I think one of which she would approve.
When the corvettes came to the hospice, someone asked Lily why she liked them. She had a very cheeky smile on her face and her eyes sparkled when she wrote.. the sound.. it's orgasmic.
I think, as with many things, she was right.
Over the last few weeks I have been slowly putting stuff away, throwing stuff away and finally, having put away precious memories of the wedding, christmas and the funeral, I am left with clothes.
How hard it has become to let go of even the oldest things - t-shirts that are worn to rags, yet retain the memmory of past days, of something as mundane as the days digging the garden together, or painting the house when we first bought it. I say to myself, if everything is precious then nothing is precious, so I am left with the clothes of Lily that mean the most, her wedding dress, the shirt she wore the day the corvettes came, her hat, the suit she went to her Ph.D. graduation in.. the list is long and is still enough to fill a wardrobe.
Yet in all of this, on this day, our anniversary there is also a stillness and a calmness to the day. I can feel Lily telling me to move on and increase the pace of life, that her 'mourning' is now over and now it's time to move on and pick up the pace of life again.
yet in all of this there is also something else. I feel, at least in part like a one way mirror, that my reflection is no longer there. It's a strange thing this - it's about trying to reconcile physical and emotional loss whilst keeping Lily alive and strong inside of me. There is still so much to tidy away. By the end of this I will have over 20 bin liners of clothes to give to the hospice charity shop, yet the one thing I cannot bare touching, even now, especially now, today, is Lily's handbag. What is it with womens handbags... sacred item indeed. She may not be here in any way shape or form, yet to go near her bag feels like the worst kind of intrusion - dare I say it a violation. Funny really.
I still have her old saab 900 convertible sitting on the drive. It's been there a while and I have been faced with a choice as to get it fully restored or sell it / scrap it. Lily would not let me part with it - it was her P&J and so 'her'. Yet I think I have found the trade off. I think Lily would forgive me letting go the saab if I replaced it with a Corvette. It seems a fair exchange and I think one of which she would approve.
When the corvettes came to the hospice, someone asked Lily why she liked them. She had a very cheeky smile on her face and her eyes sparkled when she wrote.. the sound.. it's orgasmic.
I think, as with many things, she was right.
Thanks for asking. Mostly OK. I have the odd day or times of day when it is difficult and I find it hard to do anything. Oddly enough, I sleep very well, but what is strange is that I now have to sleep with both the radio and the light on... in some bizarre way it feels like i've become afraid of the dark. I'm sure it will pass in due course.
Our home is still a work in progress. There is much that I still need to sort out and either keep or give away. The legal matters also leave me feeling very cold at times - officialdom is such a bloody sterile thing that leaves me feeling numb at times.
I am yet to return to our place of work. That is somethign different for me and will be charged with a very different and much harder emotion. All of Lily's artwork is there, as well as many positive and happy memories of good stuff we did together. It will not be easy as even writing this I can hear her footsteps on the stairs and in the reception.
Other than these things, which in truth are things that make me more unhappy than overwhelmed, I am fine. I am slowly coming to terms with a life without my girl. I still feel her presence all the time and at night it is stronger still (and I think that's the reason why I sleep with the light on). Lily is constantly in my thoughts and I am planning how to move life forwards in a positive way.
It is almost two months since Lily died. When I was a child and thought about the school summer holidays, six weeks seemed like a lifetime. At the end of the holiday it always seemed to have gone so fast.. Lily's death seems to be both these simultaneously. The hospice time feels like a lifetime ago, her passing right now. I know it's just the brain processing, but it does really add to my belief that time is a very abstract concept!
I have deliberately given myself time off work - I could not go and do the work we used to do whilst going through my own 'stuff'. I now feel almost ready to start again. It's time I think. It's time to take the positive forwards and use it in the work we did before. I promised I would never become some kind of 'evangelist', so as with everything else, our experiences will be put into a positive context and drawn upon when appropriate. If would seem daft not to.
In the mean time I looking hard for corvettes, though practicalities abound (storage, garage etc) and i've a real hankering after an LS400 to take me an Lily northwards in a few weeks.
Our home is still a work in progress. There is much that I still need to sort out and either keep or give away. The legal matters also leave me feeling very cold at times - officialdom is such a bloody sterile thing that leaves me feeling numb at times.
I am yet to return to our place of work. That is somethign different for me and will be charged with a very different and much harder emotion. All of Lily's artwork is there, as well as many positive and happy memories of good stuff we did together. It will not be easy as even writing this I can hear her footsteps on the stairs and in the reception.
Other than these things, which in truth are things that make me more unhappy than overwhelmed, I am fine. I am slowly coming to terms with a life without my girl. I still feel her presence all the time and at night it is stronger still (and I think that's the reason why I sleep with the light on). Lily is constantly in my thoughts and I am planning how to move life forwards in a positive way.
It is almost two months since Lily died. When I was a child and thought about the school summer holidays, six weeks seemed like a lifetime. At the end of the holiday it always seemed to have gone so fast.. Lily's death seems to be both these simultaneously. The hospice time feels like a lifetime ago, her passing right now. I know it's just the brain processing, but it does really add to my belief that time is a very abstract concept!
I have deliberately given myself time off work - I could not go and do the work we used to do whilst going through my own 'stuff'. I now feel almost ready to start again. It's time I think. It's time to take the positive forwards and use it in the work we did before. I promised I would never become some kind of 'evangelist', so as with everything else, our experiences will be put into a positive context and drawn upon when appropriate. If would seem daft not to.
In the mean time I looking hard for corvettes, though practicalities abound (storage, garage etc) and i've a real hankering after an LS400 to take me an Lily northwards in a few weeks.
It's now two months since Lily died.
Time has this curious ability to go scarily quickly whilst also crawling at a rate not faster than the slowest snail. Death leaves marks in many ways upon those left behind.
When Lily first died I could not even think about our time in the hospice. But things change and over the last couple of weeks what were once unthinkable memories and unbearable thoughts have now become a comfort to me.
After death comes grief and after grief come sadness. The sadness remains, the grief slowly being replaced by the comfort of smile and remembered intimacy of previous days and times way before this all began. Some things become increasingly hard though.... anniversaries. It is now coming up to a year since she started showing signs of being ill. It is so easy to say 'if only..' and in accepting that thought into my mind i'm pulling the pin on the grenade to blow the dam of endless nights of 'what if's...'. So perhaps not, perhaps instead I have to try and find a way of dispelling the anniversary sadness and replace it with something else - a process that is very much a work in progress.
My big road trip seems to be preparing itself in so many different ways. The car is sorted, the destinations almost set, it's just down to dates and the vagaries of spring weather. In the days before Lily died, I said to her that I would take three or four months to sort out things in my head to be able to move on enough to restart life again the way I want it to.
But today I realised for the first time I am truly scared. It scares me beyond measure the thought of letting her ashes go. I suppose in part it's because in doing so i'm letting go and therefore moving life forwards. It's strange what we can be so scared of. Yet this is something that needs to be done alone.
Sometimes saying goodbye isn't about funerals or ceremonies, it's about the mental act of letting go, closing one door and opening another. Lily if you are ever with me, give me the strength one last time to do something for you and me. Give me the strength to let go of grief and embrace living. Give me the strength to losen my grip on everything surrounding you for fear of ever forgetting and instead give me the courage to let go enough and trust myself to remember free from fear and sadness and ever forgetting.
Time has this curious ability to go scarily quickly whilst also crawling at a rate not faster than the slowest snail. Death leaves marks in many ways upon those left behind.
When Lily first died I could not even think about our time in the hospice. But things change and over the last couple of weeks what were once unthinkable memories and unbearable thoughts have now become a comfort to me.
After death comes grief and after grief come sadness. The sadness remains, the grief slowly being replaced by the comfort of smile and remembered intimacy of previous days and times way before this all began. Some things become increasingly hard though.... anniversaries. It is now coming up to a year since she started showing signs of being ill. It is so easy to say 'if only..' and in accepting that thought into my mind i'm pulling the pin on the grenade to blow the dam of endless nights of 'what if's...'. So perhaps not, perhaps instead I have to try and find a way of dispelling the anniversary sadness and replace it with something else - a process that is very much a work in progress.
My big road trip seems to be preparing itself in so many different ways. The car is sorted, the destinations almost set, it's just down to dates and the vagaries of spring weather. In the days before Lily died, I said to her that I would take three or four months to sort out things in my head to be able to move on enough to restart life again the way I want it to.
But today I realised for the first time I am truly scared. It scares me beyond measure the thought of letting her ashes go. I suppose in part it's because in doing so i'm letting go and therefore moving life forwards. It's strange what we can be so scared of. Yet this is something that needs to be done alone.
Sometimes saying goodbye isn't about funerals or ceremonies, it's about the mental act of letting go, closing one door and opening another. Lily if you are ever with me, give me the strength one last time to do something for you and me. Give me the strength to let go of grief and embrace living. Give me the strength to losen my grip on everything surrounding you for fear of ever forgetting and instead give me the courage to let go enough and trust myself to remember free from fear and sadness and ever forgetting.
It has been a while now since I wrote upon here. Life goes on for all of us and me included - though at times like many in recent loss the urge to pull up the drawbridge and repel all-comers is strong. But every day that life is sad, life is also not so sad and brings forth beauty and love in a thousand shapes and forms. I am blessed to have met so many kind peoples and be bouyed along by deeds and words that convey so very much. I think of Lily every minute of every day and she is my constant companion who still supports me in the ways that matter. I feel so sad at times, yet at other times, a strength and resolve to move on drawn from my lily's tremendous courage spurs me on.
The final part of the physical journey of letting go begins and I am for the first time afraid of my own grief. To let go the physical form is a challenge of great proportion and I steady myself in my fear by grounding on a mountain and letting my spirit soar like the sea eagles upon high. Through the eagle's eye I see the small figure of a man sitting on a high hill holding a bag of dust, letting go a lifetime of love. The bag is of dust that must be set free for life to continue annew. Yet the man pauses in his fears of letting go of life becomes the start of letting go of love itself.
I sit and wonder at times if true strength isn't always about the doing, it's often of the letting go and having the strength to do so knowing and trusting it's the right thing to do. It's easy to hold on so tight, but a thousand times harder still to open the cord, release the essence and step into the unknown. My first step is but a handful of hours away. Never in my life have I felt so scared, never so afraid. Just Lily, the mountains, the eagles dream and me.
The final part of the physical journey of letting go begins and I am for the first time afraid of my own grief. To let go the physical form is a challenge of great proportion and I steady myself in my fear by grounding on a mountain and letting my spirit soar like the sea eagles upon high. Through the eagle's eye I see the small figure of a man sitting on a high hill holding a bag of dust, letting go a lifetime of love. The bag is of dust that must be set free for life to continue annew. Yet the man pauses in his fears of letting go of life becomes the start of letting go of love itself.
I sit and wonder at times if true strength isn't always about the doing, it's often of the letting go and having the strength to do so knowing and trusting it's the right thing to do. It's easy to hold on so tight, but a thousand times harder still to open the cord, release the essence and step into the unknown. My first step is but a handful of hours away. Never in my life have I felt so scared, never so afraid. Just Lily, the mountains, the eagles dream and me.
thank you for your lovely words. I take a great deal of comfort from the knowledge that there are so many who walk the same path as me. We walk our paths of love and loss alone, but we all share the same journey. My dreams of late are vivid and bright and full of conflictions of emotion. It has Come to today, and before the rain falls I shall walk the blackened peaks where the eagle soar free and let my lily go.
In truth I don't know how I feel - today is a day like no other and one of vivid thoughts fighting total numbness.
Lily's favourite siong was called 'Zendonie' and it is a song about the imprisoned mind finding freedom even though the guards lock the man away. As I sit here thinking of today, perhaps no place is more fitting to let her go. Lily was always a free spirit, a soul too bright, too strong and too vibrant ever to be imprisoned by anyone or anything. Today I shall put aside my sadness and set my Lily free... where the sea eagles soar and the spirit is free, where the mountains meet the oceans, my dreams of free Lida and me.
In truth I don't know how I feel - today is a day like no other and one of vivid thoughts fighting total numbness.
Lily's favourite siong was called 'Zendonie' and it is a song about the imprisoned mind finding freedom even though the guards lock the man away. As I sit here thinking of today, perhaps no place is more fitting to let her go. Lily was always a free spirit, a soul too bright, too strong and too vibrant ever to be imprisoned by anyone or anything. Today I shall put aside my sadness and set my Lily free... where the sea eagles soar and the spirit is free, where the mountains meet the oceans, my dreams of free Lida and me.
a day of dodged rainshowers.. I knew the place would make itself known when I got there and sure enough of the many undulations and false summits, the right one became obvious. It rained on the way up,it poured on the way down, but when it mattered, it had stopped. I toasted my girl with cold tea and sang her favourite song, then let her go where the wind took her towards the mountains. I walked down through the mist and trees and played another favourite song and cried a thousand tears of loss and sadness. How fitting that she flew to the mountains. Before the rains returned there was a silence and stillness befitting the occasion. Thisisland has captured another soul. I shall return again to walk these mountains. I shall join her again soon - Skye has captured another soul.
Just a happy update....
Well if any of you reading this remember, one the biggest complications that Lily had when she first went into hospital was the insertion of a foley catheter instead of using a proper feeding tube. It caused all kinds of extra stress and complications and excluded us from specialist home nutritional nursing help when we needed it most. All because the wrong tube was fitted.
Well today I received a letter from the PCT trust that confirmed that they will no longer fit foley catheters and instead, from day one the correct tube will be placed.
When I opened this letter I cried tears of joy. It means that the 2 - 3 people a week who go into our PCT for this type of surgery will not wake up to the bitter surprise of not getting what they had told to expect. All it took a letter from us, supported by our cancer centre to make this happen. It has taken just a few months for this change to be made and for those going through this procedure, it is big deal. I wrote the letter with no intent and no agenda other than wanting change.
I am happy beyond words today that for the next person walking my darling Lily's path, there will be one less stone in the road.
Well if any of you reading this remember, one the biggest complications that Lily had when she first went into hospital was the insertion of a foley catheter instead of using a proper feeding tube. It caused all kinds of extra stress and complications and excluded us from specialist home nutritional nursing help when we needed it most. All because the wrong tube was fitted.
Well today I received a letter from the PCT trust that confirmed that they will no longer fit foley catheters and instead, from day one the correct tube will be placed.
When I opened this letter I cried tears of joy. It means that the 2 - 3 people a week who go into our PCT for this type of surgery will not wake up to the bitter surprise of not getting what they had told to expect. All it took a letter from us, supported by our cancer centre to make this happen. It has taken just a few months for this change to be made and for those going through this procedure, it is big deal. I wrote the letter with no intent and no agenda other than wanting change.
I am happy beyond words today that for the next person walking my darling Lily's path, there will be one less stone in the road.
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