The waiting is the hardest bit

[drivin_me_nuts]

A day of ten positive steps is better than a day of a thousand unsafe ones. A day of quiet and calm untimacy watching gently falling snow on frost bitten grass is a pefect way to spend a cozy honeymoon afternoon. I smile at Lily and she smiles back. Are you OK? I ask. She nods. I want a foot of snow, I add. She nods further and smiles a bright smile and offers a thumbs up. Days of big drama followed by delicious days of quiet make the tasting of intimacy even sweeter.

We sat here talking a while then I talked of my feelings and thoughts and Lily wrote her own in reply. We cannot change much, but when she wrote I love you lots, upon my arm, a crimson tattoo would have left a lesser mark.

I wonder sometimes why I write. Perhaps it in part is my antidote to rage. Perhaps it has become my way of turning anger and frustration into something positive. I draw upon our love to temper my sense of injustice, to sustain me and as a counterpoint to the anger that could punch walls in frustration and rage at those around us who would twist the truth and turn Lily's and my personal tragedy into their own dramas. Everyone deals with this differently she writes. Yes says I, but they should at least be aware that they are not the only ones, I reply. They are doing it the only way they know how to, she responds. It's not about them I add, it's about you. And she smiles her knowing smile and shrugs her shoulders as if to say they won't change, so why let it worry you.

I kissed Lily three times before the green genie took her to the land of sleep. The green genie; inducer of dreams, of rest and a deeper calmness to match the gently frosted pavements and frozen landscape. I hope it snows tomorrow and the genie of the north wind leaves us honeymooned and coccooned from the world a while longer.

[drivin_me_nuts]

Flu for me, unspecified unwellness in Lily. So not the best in chateau hospice, but still it snows. There is great pleasure to be had in the little white trinkets of gently settling fluff

Thanks for all the kind words. I know, there's not a lot to say sometimes other than the empathetic acknowledgement that life can be utter crap. But I hope you can also take great comfort from the fact that Lily has quite the most extraordinary level of care. I can lie here feeling grotty and I know that she is being looked after very well indeed. That I could not say of being at home or in truth, being at the hospital.

She really is in the best place. If that at the moment is the best that life has to offer, then Lily has the very best.

[drivin_me_nuts]

Thanks for your post Becca. It was timely and we have just had the conversation about this being the best place. For many reasons, both practical and emotional, this is the best place for Lily to be. It is quiet, comfortable and more important the care is there all the time.

The hospice do have a care@home group of nurses, but TBO here is the better option. Lily knows at any time she can change her mind and I am always respectful and mindful of that. Today we stay, tomorrow might be different, but we'll go with what ever Lily wants.

Thanks for posting - it was a timely reminder to ask Lily again of what she wants and a very welcome post from you. Thank you. As the the Klexane, she shrugged her shoulders ... I think she's becoming used to them now.

[drivin_me_nuts]

Thank you. There are days and nights throughout this when the walls seem to close in a little closer and the sense of isolation and silence in all of this is deafening. Today is another anniversary, one month married today! Yay. Happy anniversary to us. Perhaps permit us the indulgence of taking an extended honeymoon of a few weeks longer, but the hotels not bad, the staff amazing and the room more than acceptable. Alas there is no pool and the view is a little limited but hey, the window seats and associated quality time together is amazing.

Some days leave you feeling numb with exhaustion. There are the days of complex activities and much going on; an accumulation of events and dialogues that collectively leave you regrouping at what is important. It reminds me of the opening credits of Dad's Army. Sometimes in all of this the mental fortress needs its buttresses reinforcing. Today I draw upon our love, try to dig yet deeper into my reserves of patience and understanding of other peoples needs and issues. We can do this, Lily and me, we'll do it together. As with everything else we have ever done, we'll do it in our unique way and in our own style...

[drivin_me_nuts]

Also another big anniversary. Today is 23 years since I first noticed Lily at a party to celebrate the longest night (shabeh yalda in Iran). She shone like a beautiful diamond that night and 'told my fortune' from a book of poetry by Hafiz (a venerated poet from long ago). When she first touched my hand it felt electric. The feeling has never left me.

23 years, more than half our lifetime. It seems like 5 minutes.

[drivin_me_nuts]

Hi Becca, it's been a very hard few days. Flu has been running rampant through my head and it's a git on the emotions. Everything and I mean everything leaves me feeling a total emotional wreck at the moment. My battery is completely and utterly empty and I have no idea what so ever what i'm running on at the moment.

This morning was hellish. There were a few sickengly heart stopping minutes when I thought the Midazolam was going to be the order of the day. Seeing bright red on blue at 7am was not the best way to start the day... Fortunately we are talking capillaries not arteries, but never the less this is the first time this 'outcome' has been more than a 'one of a range of ..'. There are no pretty words to describe how it leaves me feeling. I saw the sparkle dull in Lily's eyes. It did not come back and when I asked her what she thought.. well there's not a lot to say really is there? Yet another day for her to mentally 'regroup' and a day for me to try and come to terms with my increasing anger and acknowledge that the anger is just another way of my terror manifest. At the moment this is utterly relentless and there are external pressures that make this even harder.

There was a small gathering of carol singers outside our room this evening singing for the ward. We were listening to her faviourite singer and when I told her they were there she wanted to listen. So up we got, slowly and tentatively we made it to the door and when they waved and smiled and the priest wished us a happy christmas the tears fell from my face. Sometimes flu in itself is a blessing - I can blame my streaming eyes on the flu, but when I held her upright I think it was only the solidity of the wall next to me that kept me from falling.

We spoke this afternoon of the price of love. I asked her if she is fighting this for me and she said yes she yes it is and I said the only reason I am holding it together is because of her. We both smiled, shook our heads and held hands and then I said perhaps this is the price of unconditional love. She smiled and nodded her head and I said to her if that's the case I wouldn't change it for a minute. However hard it is, it's a price worth paying. I won't leave her and she will fight. That's the deal I said. She smiled and nodded and I held her small hand to my face, covering her nails yet again today in tears and kisses.

I talked our lovely evening nurse about all of this. I said to her even if this is the price to pay for love then I would rather this than live through life not loving what it meant to be loved. She nodded and smiled and when Lily came out of the bathroom I saw a little more of her spark return. There was the determination in her steps, the resolve that is unbreakable.

Sometimes to survive the storm you have to be like the reed in the stream bed and not a mighty oak. You have to bend and flow, move and twist and turn through the eddies and twisting currents of life. But some days it feels like you're a reed being beaten with a truncheon.

I live in hope that tomorrow will be a better day, a day of quiet calm and further regrouping. It's hard to write sometimes the brain is just numb. I am aware that people read and worry, but sometimes the brain has no words and just blank spaces where thoughts used to be.

I will sort out those stickers in due course.

And becca, thank you for your kind words and concerns. Today: 20/10 stress wise, but love wins out yet again. When Lily said she does it for me, I saw true love in her eyes. I'd live a hundred years in this room till she gets better. Most definitely beaten down at the moment, but far from broken.

[drivin_me_nuts]

Well today was indeed a better day Flu seems to be on the way out, mental exhaustion diminishing and calmness returning after the quite horrendous fright of the other day. Mind you, it's left its mark in a sense of unease and I suppose fear and uncertainty. These are very hard outcomes to handle - I take 'comfort' from the fact that that particular scenario will be very quick.

Lily remains as ever unphased by these aspects. I wonder sometimes if it's a 'war thing', for want of an expression. She has seen more anyone should see in a lifetime of people at the sharp and red end of end of life and I suppose she has experience to draw upon. For me it's something new and no matter how one would believe they were 'prepared', reality would always be a shock. Enough.

So, our first Christmas together. Funny, in all of this it's easy to forget. How exciting! I've still not gotten used to saying 'my wife' - it feels plain weird to me! So all being equal I and my wife will be celebrating our first Christmas together. Raise a glass to us and I will do the same to you. There are so many of you to acknowledge who have helped us over the last few months - thank you all. And I say a very special happy Christmas to all those who made my Lily's Corvette dream come true and to Lucy and Melanie for your wedding efforts and all of your kindness and generosity. But please also allow me to wish an especially big thank you and happy christmas to IforB, Nina the lady with the broomstick and to Becca who have given me invaluable support and such practical advice throughout the last few months. From both of us, thank you so so much. Cheers to a wonderful Christmas. Drink lots, eat lots and celebrate life lots!

[drivin_me_nuts]

Thank you all Christmas Day was indeed special .. firstly to be woken in the (very late) morning by a host of nurses dressed as elves and a fairy queen wishing us a happy Xmas and then more food than I could shake a big fat stick at. And for Lily, well she got a very sepcial day as well in that another of her sisters arrived in the UK. That makes 3 now, one more sister and a brother to go - embassy permitting. It will definately be a day to remember and I am hoping that there will, in all the obvious and inevitable sadness be days and weeks of laughter. Lily was very happy to see her.

Even get that feeling that pieces of a bigger jigsaw are sliding into place? You can sense it.. almost feel something at the edge of your consciousness. At the moment it feels a bit like this. Lots of vivid dreams as well - one in particular about Lily not dying and getting better. Perhaps we'll be taken to the edge of the precipice, stare over the edge and step back. Who knows. It doesn't feel anymore like Lily is dying. Perhaps the brains gone past the point of worry and is concentrating on the living.. Who knows. It is what it is, we'll no doubt see.

We played charades this evening. Well Ok, I played charades. Dirty Dancing, Ghost, four weddings and a funeral and Shakespere in Love. I'll leave it to your imaginations how I did the last one. Before the green genie took her to the land of dreams she had a big smile on her face. Silly moments to punctuate the harder sadder parts.

The nurses here are being incredibly supportive and ever more involved. What I find so incredibly touching is that they care as much about me and my needs as Lily. There are some long hours in the middle of the night and I sense that if and when this is over, I shall sleep for a month. There is another kind of exhaustion going through all of this. It goes beyond sleep and fears and worry and perhaps it's beginning to involve the word relief. Lily is a fighter, she always has been. She fought the revolution, she fought the war, she had to fight a hundred ways to get her education and to build a career. She wrote the other day 'I will live until my time is up, not a minute longer, not a minute less'. So for now, our train still continues on its adventure. The rails still click clack away underneath us. We still smile and laugh, I still press her feet and massage her legs and kiss her lips and watch her beautiful smile and sparkling eyes. Sometimes I see the shaddow of a darker future pass overhead, but she dispels it with her courage and determination.

I have learned so much from Lily over the last two and a bit decades, yet perhaps the greatest learning has been in the last few weeks and months and I hope more than anything else it comes across in the posts... and that is the power of adaption. I see her constantly having to adapt to a new limitation and I see how fast she does it. She never ever looks back, never mourns the 'loss' or rages at the 'injustice', she processes, compensates and then gets on with it. It's remarkable to behold and truly inspiring. It is something I take forward in my life and I now realise in part is the answer to the 'how'.. as in how you get through a war, a revolution, catastrophy and chaos. I feel very humbled to be around her and part of her quite incredible journey and this quite extraordinary adventure.

You do have a choice with all of this. You really do have a choice to drown in it, or face it head on and get through it. There are crap days, there are many many tears and grief and a host of associated emotions, but actually, in all of the hardship you can sit still a while and learn from a great deal of it. It's still very very hard, but in the heat of hurt, the pain and the grief there is an an erichment of the soul. It does not have to harden you, embitter you or leave you detached. In fact it can enrich your life in ways you cannot even begin to understand until you become aware of what you are going through. If this is the 'price of love' that has to be paid, like I wrote before, I would pay it many many times over. It's so worth it.

Life is rarely as we plan it. Plan for the worst, hope for the best and then don't forget to carry on living. That's the tricky bit. But when you do it, life becomes so much better. Now, my last task before sleep... how to do a charade for love actually.

edit: I've been reading this TOTY posts and it surprises me that this would be included. I'm not sure how it makes me feel it being included, but all i'll say is that if what I have written about our cancer adventure can change the experience of a single cancer patient or partner then Lily and myself would be truly happy. It makes it all worth it.

Edited by drivin_me_nuts on Monday 27th December 02:54

[drivin_me_nuts]

Yesterday morning Lily had another big bleed. It's weird really, waking up to clean a traccy tube to see a puddle of blood on pillows and sheets and covering a nightie. Funny really how the brain reacts. Press the alarm, ask the nurses to come in, get towels to clear it up, pull the medazolam down from the cupboard.. again, clear up the mess, stare at the slowly clotting blood and go back to sleep. Oh well says we as we both shrug our shoulders and look at each other, hold hands, tell each other we love each other yet again and slip back into the land of sleep for a few more hours.

Oh well, here's the latest thought for 4am. Continue with the blood thinning drugs and increase the risk of a clot becoming terminal, or stop it and risk a potential stroke or loss of sight. Albert was right, time is indeed elastic. 3am stretches into an eternity. I sat by her bed before she slept and watched the rising and falling of her chest, cleared out another blood flecked traccy tube and wondered at a host of things.

I have no regrets, no 'if only's', no what if's to ponder, save only one thought. Sometimes you don't realise the true impact of clinical decisions until afterwards. In the fear and the terror of immediate crisis you do what you have to do. If I could go back to the night before her traccy one more time I would keep Lily awake all night. I would ask her to tell me her life story, read her research papers to me, read a book, the newspaper, the stars in the newspaper...anything. Anything, until the moment that she went under the local anasthetic. In all this, it's not the fear of death and the suffering I see that's the hardest to bear, it's the silence. It's the silence of a voice once strong and confident, self assured and funny. In that one night I would soak up every word, my ears would savior every morsel of sound of A voice cheeky and bright with enthuiasm for science, a voice to challenge, to state facts and debate, a voice to tell stories, to share laughter and quiet words, a voice to change people's lives and a voice to be my constant companion. It's a voice that in all of the ensuing stress and chrisees has faded from my mind. I shall listen again when I go home one day to Lily's voice recordings and it will come back into my mind vibrant and strong as always. Until that day I shall watch Lily's eyes, that tell a thousand words in the single stroke of her fingers. I see cancer transform Lily on a day by day basis and the rate of change has become exponential.

I see the station not too far ahead and this train seems to be inexorably slowing. There is that shift in weight from our loco pulling to the inertia of cancer pushing. Perhaps our journey's almost done, out adventure through. I said to Lily this evening as she slept she can stop when she's ready. Perhaps the time has come to ease back and gently dampen the fire. We still travel in hope on the track beyond this station, but cancer is moving very swiftly indeed now and I wonder how much longer we will travel. There comes a time in every journey where you trade your hopes and will and stubborness against the suffering that it causes. It is not my choice, but Lily's. Lily will know when it's time and all I can do is but hope that I am with her when that time comes. There will be no ringing of alarms or pressing of buzzers from me, just a gentle kiss for my girl and a few minutes of time before the world turns to chaos and the puppeteer cuts the strings above my grief. Tonight I face Lily's mortality head on. There is nowhere left to hide, nowhere left to go to other than cruel reality. time is short and time is precious and love will be the only thing to edure the grief that follows. Not a moment more, not a moment less, Lily is right, but the waking moments are precious in a way that cannot be conveyed in any words.

[drivin_me_nuts]

Thank you all for your kind words of support. Lily is having her dressing changed now, hence my few minutes on PH and a curry for breakfast/lunch! Another very difficult night and upped meds and talk of syringe drivers and increased levels of diamorphine. Not a lot to say really anymore. My 3am posts are that of a brain processing huge amounts of stress, this one a brain completely empty of emotion trying to get through another day.

Life at this stage of cancer care is gruelling beyond words for everyone. There are no words to describe the exhaustion and huge efforts it takes all of us, Lily, me, family and friends to keep going. But somewhere in all of this you see the human side of human being, the love, frustrations, anger, frustrations, worries.... you name it, it's there. These are the emotions that make it possible to continue i.e. we continue because of them, not instead of them.

Another day in hospice land. The staff are amazing. Without them, Lily would be dead by now and I would be broken in two.

[drivin_me_nuts]

.. drug driver second line plan B. For now it will go through the peg - no dedicated drug port on her one, just one giving port and one baloon port. Issues with sight this morning. Fading in and out.. This is the ultimate nightmare. Today cannot get any worse. Got an optician friend coming but Lily going blind... how will she communicate with no sight and no voice.

Stress levels through the roof, emotional stress levels up in the stars.

Visas etc sorting out.

[drivin_me_nuts]

.. i'll hang fire Becca. Not sure what's going on or if it's permanent or not. Seems to be more to do with head positioning than anythng else. Our optician friend has said it's not eye pressure related per se.. it's just the effects of the collective 'everything'.

Hard day today in so many ways.

[drivin_me_nuts]

Another utterly gruelling day beyond words. The terror and fear of Lily losing her sight was palpable. As always she remained calm - god knows, I think I would have been terrified had it been me. But our optician friend came and put her mind at rest. There is lots going on but as with movements it's positional and due to the very complex nature of the cancer she has.

We talked again this evening of funerals and choices and tomorrow, amongst the inevitable wailing and tears of funerals we need to talk to her family about Lily's choices and wants. It's about time, like the making of the will, you do it once, get it all out in the open and then the mind can mentally tick that bit off and get back to living, rather than continually dwell on stuff.

We travel this journey as a couple Lily and me. Every night seh writes upon her arm I love you lots and lots and every noght I kiss her and rntwine my hands around hers and place my hand upon her heart and mine upon hers. It has become the rutual of the night, nebuliser, voltarol then the tamazipam and then a few precious moments of good nights.

Tonight was calmer. I hope the night dramas and pain have for now diminished and Lily can rest longer, pain free. I do not have the words to describe how hard it is to watch pain such as this. It is beyond anything I can ever describe, suffice to say it it to be endured then in time to be gently forgotten into the recesses of the mind. There is too much love and intimacy for the harder parts of this to dominate. Again this feels like a conscious choice I am making - choosing what to remember and what to forget. We are blessed Lily and me. We have always been able to stop and see the beauty in things, from the shapes in the clouds to the joy in watching piled up snow on terraces of railway sleepers. This place has been our salvation. It has given us the time and space to just 'be'. I will be forever grateful for this. It would never have been the same at hospital and home would have turned into hell.

.. And the funny thing, perhaps my mind is also turning to face and overcome my greatest fears about afterwards. The simple things like doing things by myself no longer seem so laced with pain. In time I will get the C1 and Lily will always be there by my side where ever we go. There are some things that will just be. I realise more and more that death is not such a big deal. Lily will never die, not in my heart and not in the hearts and lives of the many people's lives she has walked into, shaken up and changed. She has always been a force to be reckoned with - once met never forgotten!

Our train still rides the tracks. We continue as before, the last few days bumpy and exhausting as days can ever be. Tomorrow will be no different but never the less we still travel forwards, the loco pulling as hard as ever it did. I sense a change of scenery and amongst the wailing and gnashing of teeth, we are going to have some fun in the days ahead. Open the injectors driver, lets put more water in the boiler and stoke the fire higher, Open the dampers, feed more oxygen and turn the fire white. If this train is going to stop, then lets make sure it arrives with a full head of steam and a raging heart of a fire fully burning. This train is an express, it always has been. No more talk of damping the fire, let it rage and burn bright. If we are due an unscheduled stop, then damnit, this station is sure going to know the Lily express has arrived.

[drivin_me_nuts]

Becca, we'll go with simple sign language for now. I think it will be too hard to do anything else for the moment. Lily can still write, even with very limited or no sight.

Not even through the worst of the day and it's already awful.

[drivin_me_nuts]

There are aspects of the cancer journey that have been touched on before by myself and others and they are at times the most complex aspects of all. There will never be an easy time and easy wat to talk to siblings about your death. Where do you star? How can a mind begin to comprehend the ultimate goodbye. And today we did just that, not with one sibling but with three. In the lucid moments of clarity, between the moments in the abyss of dispair, there were total silences. Perhaps in doing so we, as a family of people can move forwards with a common purpose; to make the next few days and weeks good ones for Lily. Cancer either tears families apart or it binds them together. Alas the outcome of Lily's cancer isn't one that she will come to see, yet her hope is that it strengthens family more.

As for us, Lily and me, yet another drama filled day. Lily can still see, her vision is a fickle thing of wavering lines and fuzzy shapes mixed in with periods of clarity. In my experience of cancer, never has it been a crueler thief. It is hard to put into words how it makes me feel, so instead I shall write of this evening. I cannot tell you the number of times I have shed tears today. Tears of grief at Lily's condition, tears at sadness at the steeling away of her senses, sadness at the complexities of family relationships and in all of this, awareness that yet another few more hours more of life have passed. As always, I give her her green genie and kiss her good night and tell Lily how much I love her and how proud I am of her and the way she has carried herself throughout all of this. She writes on my arm I love you lots and lots. Then tonight she wrote how proud she was of me and then I felt completely undone. I feel so far from that word as it is possible to feel. I feel ashamed of not being able to do more than I do. It is never enough, I cannot make her well, only fetch and carry and love and care and in the early hours of the morning these seem to count for so little as to nothing. There are appalling moments of doubt and undertainty and times when you feel that nothing you do is ever good enough. It is unbearable at times watching her slender form become so changed. It is only in her smile and sparkling eyes that I know it to be Lily. These have turned into days to be endured and love really has become the only way to get through them. I will never leave, I will never run, but I am aware of the toll it is taking on me. You reach the stage in the cancer journey when you give permission for your loved one to go. You reach a time in this when you realise that to want that person to live is actually a balance tipped to far to the side of pain and suffering. No euthenasia in this country. God knows, there are moments in a day when I wonder if it was an option, if and when Lily would take it.

Instead I hope for a few more days and weeks of intimacy and laughter and time to enjoy Lily a few precious moments more. Life has become stolen precious moments, that are indeed savioured and stored away for days of famine.

[drivin_me_nuts]

Today has been the worst day of all. Worse that being diagnosed, worse than the days she almost died, worse even than knowing and living with the fact that Lily's life is coming to an end soon. We are using a Morphine driver now to administer the same amount of drugs. Rig administration is a bit unpredictable at this stage - absorbtion through digestive tract not guaranteed, so it goes in through a butterfly. We can do this Lily and me, calmly, quietly and with dignity. But when others become involved, then life turns into something else and the reality has ben hellish, properly hellish.

I have no idea what tomorrow will bring. The Lily express still continues; slightly battered around today by the elements, slightly the worse for wear and to the even untuned ear, there is clearly more strain and the load more burdensome.

We have some steep hills to climb ahead, Lily and I. I can see them coming, they involved other people and complex relationships. I take every day as it comes and all I can say is that protecting the dignity with which Lily has lived her life throughout the last few months has become my mission. My sister says I need to be like Switzerland.. neutral. Perhaps what she what she forgets, is that it keeps neutral in part by bristling with defences. My beautiful Lily, need not know anymore that the world around her turns to chaos. Bereavement brings out grief and anger beyond measure. It is a scattergun that turns on those closest in an instant. It's a shame to watch as it robs all dignity and decorum from the situation. Some things said, can never be unsaid, I learned that many many years ago. It's a tregedy that some around us haven't the same understanding. It is so, so sad to watch. The Lily express shall carry on and I shall, as much as possible keep the storm from battering it. But god knows, it is taking its toll on me. Be Switzerland... perhaps at times to survive you need to be a tiger crossed with a porcupine, carrying the wisdom and understanding of confuscious and the diplomacy of a negotiator. In all the chaos of other people's lives, remember the main thing. I do it for love, only for love. Only for Lily, my Lily. The more they batter, the more I draw upon our love to get through this. I am grateful beyond measure that it is so strong, because these are our darkest days.

[drivin_me_nuts]

A different kind of update this afternoon. Times change things so fast. It is apparent that time is moving events along quickly. Sleep, the craved for commodity from a few weeks ago is here in abundant supply at the moment. It's good in many ways, for good sleep is the result of lessened pain. We have gone from twenty to zero in the matter of a few days. Morpheus, the bringer of rest and recouperation draws forth its marker for the last straight track before the final turn. The distant signal is clear for us to see, the station is now but a handful of miles away. The lily express is still bright and strong, the fire and will to live as potent as ever it was, but overall the engine is slowing. A day of peace for Lily and a day of silence in me. No relatives, no one to witness my beautiful girl losing her sight this morning. We are all but blurs and shaddows to her now, Just her hearing remains, and her smile and the squeezing of a hand still strong for life but pushed in other diretions by forces far from her control.

We have dignity and composure in all of this. It's what Lily wanted and it is the marker of her life that even on her final days is carried forth upon a shield of courage and determination. She is not afraid of death, nor is she waanting to die, but as always she smiles, shrugs her shoulders and says 'it is what it is'.

I can see the end, not now, but soon. A handful of days perhaps and then the final breaths await a life lived to the full. It is not the quantity of heartbeats that mark a life lived, it is what we do between the heartbeats that is a true measure of the quality of a life lived.

I say no more for now, this express needs some gentle hands over the next few days to support and nurture the life remaining. We have but a short time remaining.

I hope that our story is one that shines as one of love. I hope that in the telling of our big adventure that Lily's life and death can somehow make a difference to those who read it, those upon their own cancer journey. I have written with the best of intentions and the constant hope for a better ending. I still live in that hope. I shall carry that hope until the last breath and then I will mourn, but I will laugh and be proud of an adventure shared with the most remarkable person I have ever had the pleasure of meeting. I am proud beyond words to have had my life and love with Lily. I am very lucky to have in this life unconditional love. I wish upon you that gift. It is priceless and immesurable. It is forgiveness and support, it is strength and it it imtimacy, it is about just being.

Lily and I wish you all a happy New Year and my one last reques from PH for my beautiful Lily is that sometime tonight you raise a glass to my beautiful girl and wish her a happy New Year.

To Lily, a shining light and beacon to hope, strength, courage, dignity and grace.

To Lily

Edited by drivin_me_nuts on Friday 31st December 16:47

[drivin_me_nuts]

Thank you all. Your kind words and love bolster me through the night. There are few words left to write, suffice to say my Lily is now asleep. Today, for the first time my beautiful girl asked for it to stop. She wrote of our journey is that it has become unbearable. If it was in my power, if I had the means to, I would stop it right now. It is what she wants of me and it is a want I cannot fulfill. I am left numb at all of this.

We have made our final turn now, the station is in sight and the Lily express is ready to stop. The final set of points have been set and the signals Lily needed from those close have been acknowledged by Lily herself and those close agree it's time to go. There are no words left to say how it feels to hear a room of people say it's Ok to stop. It needed to be done, those close have said their goodbyes, we are left now with but a handful of hours or days.

The lily express chooses to stop. The driver has said enough. Who are we to but agree? There are no words left, the driver cannot speak. There is no taste in the air of a cool winter's night, the driver cannot taste. There is no smell of superheated coal to savour, no mix of oils and slowly simmering coal to sense, there is no taste upon her lips. There is only sound, the gently fading hearing that itself slowly mutes and in a short time will fade as with everything else.

This cancer thief, this stealer of my lass has robbed her of so very much. But it cannot and will not take her dignity and her immense courage. We are but feet from this unscheduled stop, yet the fire within still burns. The heart races, the breathing is steady and sure, but the brakes have been applied by the driver.

My next post will be that of an express now stationary. Lily will never fade, her light will never diminish. lily's inner power and will to live have been extraordinary. Her courage in the face of crippling adversity and agonising pain have been immense. Lily's dignity and huge, huge presence and tenacity have been and continue to be acknowledged by all those she has come into her contact with. Lily is a shining beacon to all that is best in humanity. A scientist of vigour and discipline, an artist of vibrant imagination, wife, lover, loyal friend, great cook, superb host, lover of loud music, of Pink Floyd and Dariush, Abadani through and through, cultured and refined, funny, smart, sassy, cheeky and so, so sharp. Lily darling your light will never diminish and my love will never die. You will not be lost to me. Ever.

[drivin_me_nuts]

No fancy words, just facts tonight.

Lily died this evening in the Martlets Hospice. She was brave and courageous in ways that I cannot ever express in words. She suffered immensely. Cancer took her voice, her strength, almost all her sight and some of her hearing. But cancer never took her sprit, humour, courage and tenacity which was truly remarkable. She was unbroken in all that she endured. All who have met Lily recently have commented upon her extraordinary ability to express herself with just her hands and her eyes. Eyes bright and shining, never dulled by blindness she conveyed the very very best in humanity. Lily never complained, never once felt sorry for herself, never once felt depressed or expressed grief at her condition. I have cried an ocean of tears since June and needless to say will cry three oceans more, yet Lily has never shed a tear for herself. Ever.

I am truly blessed to have shared her journey. Our adventure has been at times one of great pain; it has been torturous in so many ways. Yet it has shown me the extraordinary lengths to which the human condition can prevail over real adversity. We have met and shared with the very best in humanity. The doctors, nurses, carers and support that we have had has been boundless. Lily has left her mark upon all those she has come into contact with. She has quite literally changed the way medical people think and act and in her misfortunes has even triggered a PCT review of fundamental feeding care needs to all patients requiring a rig.

Lily's passing was quick, it lasted a handful of days from the time of my last posting to this evening. She wanted to die and it was indeed unbearable. Yet she did so with grace, dignity and a serenity that was truly beautiful to behold. Last night the room was calm and had a serenity about it that was tangible and real.

Several days ago, about the time of my last posting on PH, Lily wrote her last words. She wrote I love you and when I said I love you so very much and wept a thousand tears, she went " ... ditto an action copied from a much loved film coupled with the most beautiful smile. Then the morphine took her and she drifted off into the land of ever deepening sleep. Her parting gift to me, a few scratched words on a pieve of paper that will be forever treasured.

And oh my Lily, humourous to the very last. Upon my laptop there has been a set of voice recordings that we made when we were writing our website - aide-memoirs and assorted conversations. I have never wanted to play them, but this evening I had an urge to find them.. and I did. Oh Lily, you daft bird, as the room filled loud with her voice, she passed away. Earlier I asked her why she was waiting to go, I could not understand why and then I remembered that I had said I wanted to hear her voice one more time. Well now I can, as many times as I like. And in the moment of that knowledge, she passed away. Me laughing and crying simultaneously must have looked very odd, but really I was laughing out loud. My funny girl, cheeky to the end has left me in her death, as in life a cheeky humour that I will always cherish and it will help me through what happens next.

I have my beliefs, I have always believed in lives lived multiple times. I have known for a number of years that Lily's passing was part of a bigger and more complex plan - there were just too many things along the way in our lives not to think that way. And Lily did too - the hard scientist who spent her life in a lab in the heart of molecular neuroscience also has a very strong spiritual side that for her very comfortably alongside science. She saw too much, she experienced too much not to believe she said.

So what of all of this. Well, it has been a very long and gruelling journey and a harder four days, wathing my loved one die. I am left with one set of thoughts before I turn off the light and dream happy thoughts of Lily and that is this.

I have been truly blessed in this life to have know and shared in unconditional love. It is wondorous in its beauty, it can get you through anything, as our journey I hope shows. It can help you ride the biggest tsunami without fear of falling and it can reach into your soul and draw forth from it the very best that lies within. My darling Lily goes to her rest knowing that she is loved. And I know that in this life I too have been loved unconditionally. I can ask no more than that. I did my very best to support her in any and every way I could. Perhaps I could have done more, but I choose not to beat myself up with 'coulda..shoulda..' rubbish. It is what it is. I have so many precious precious moments to last a thousand lifetimes.

I cannot thank you enough wellwishers of Pistonheads. You made my Lily's Corvette dream come true, you made my dream come true. I can thank you in no other way that means anything to me other than to say to you that I have a wish for you.

I wish upon your lives, for however long or short the time may be, unconditional love. For it lifts mountains and carries you over terrible floods.

Lily asked me a while back to thank you once again for all the support you have given her.

From Lily and me, thank you for everything. And I mean everything.



Lily: 2nd August 1965 - 4th January 2011.



It's not the quantity of the heartbeats that matters in life, it's what you do between them and Lily lived those spaces between the heartbeats to the full.

Edited by drivin_me_nuts on Wednesday 5th January 03:08

[drivin_me_nuts]

Thank you.

Today I start to clear my house of medicine and 'stuff'. I feel sick to my very core - this part was always going to be so very hard. There is music in the house and my sister and I am dancing to Salsa. Lily would not want our home quiet and it has been sleeping for too long. Later I will cook with my sis and we will reawaken the heart of our home.

I am planning Lily's funeral for the 16th. Lily will be in a painted coffin, vibrant with her reds and golds and with her favourite Persian dancing lady on top. People will bring a single flower and take a different one home with them. No black. Lily will be in my favourite dress, the one I spoke of back in June. She will wear it one last time along with her (and mine) favourite deep red shoes.

It will be a good day, a day of celebration of a vibrant life lived as it shound be.

I graciously ask for everything else to wait. It is all too much and I have a lot to do.