Dear Paul

It has been a while coming but today feels like the right time to write a final post, officially as it were as I have hardly posted at all in the last three years. I thought I should let you know first of my decision to wrap this up. There have been times where the suggestion of moving on would be met with fury inside. Why do I want to fucking move on, doesn’t that mean I am trying to forget you? I like this pain; it is familiar and comforting and I can consistently hate and rage against it. But then there comes a time when the raging subsides a little and you realise you will probably never move on in the way you thought. You don’t wake up and it’s over, you don’t sidestep grief and pain but the relentless waves ease and rather than moving on you learn to live with the ebbing and flowing.

Three years? Yes it is three years since you left us. You would think anniversaries get better with time but they actually just accentuate the time rolling out without you. In the bad old days this blog kept me alive, kept me focussed on the fight being something that spread further than our lives .I spent so many nights alone, waiting for a miracle while the children slept and you lay in your hospital bed fighting for your life with all you had. Now I see those dark nights from the outside, looking down at myself sitting shadowed but for the electric glow of the screen. Sometimes I would just sit there, immobile and entranced, then something would trigger a thought and I would write. Sometimes I would be hunched and sobbing, sometimes I was alert and defiant,  but I always wrote the words in the hope you would read them too from your high up room and sometimes you did and I suppose I am hoping you might be doing that again tonight.

I remember one of the first nights I spent with you in the hospital. The diagnosis was new. The drugs were the first to course through your veins and you were sick with them quickly. You slept and the room up there on the 13^th floor was calm, I lay with you under a dim light and the twinkles of London were reflected in the glass. I remember thinking;

‘Once we were part of those twinkles, we were the soul and heart of those lights, we danced in them till dawn broke and daylight swept us home. This cannot be it. This cannot be our lives looking down on the beginnings of things and thinking they might end. This is not what we planned’.

But now I know that the life you plan is not the one you end up with.

And I was cynical then that the hand we had been dealt had destroyed any hope, but I know now that it’s gossamer threads had lingered beyond your death. Hope I could make it through funerals and gloomy blooms and nights of tears and too much wine. Hope I could run and cook and still read a story to Cassidy and Kitty with fun and laughter and that I would not simply die one day of a broken heart. Because it is sore.  Grief is fucking sore. Did you know your heart can actually ache with the pain of loss? Who knew?

There are many things I wish. I wish I did not see your light disappear in front of my eyes.  I wish I had never seen the darkness take their blue, take the eyes that had had reprimanded me, captured and consoled me. Those eyes, those eyes, the ones your son has now.  The eyes I like to think blossomed in my presence.  I wish many things but I never wish I did not know you, meet you and love you.

It can be very hard to see any positives in this journey at times, I say that as if I have come to an end somehow. But things are never that cut and dried. What I think I mean is the positive thing is we are here, we have survived, a little war torn and battle worn, but we are here. Life does march on despite everything and I want you to know we have achieved what you would be most proud of; laughter and light. But there has to come a time when a line is drawn. You would agree I am sure. So this is the line under the T – Cell chronicles because that journey is well and truly over and if there is one thing you taught me in your death, it is how to say goodbye with dignity.

All my love always and forever H x

I have a book. It is small and red with a broken spine. Its edges are tatty and worn and it has absent-minded scribbles on the outside, mainly of eyes with splendid lashes. I have a book, it is small and battered and a little bit broken but it is full. It is full to bursting with scribbled thoughts and pained lines that I can barely read back but I try from time to time and it reminds me of how far I have come in a year and how far I have still to go.

I have a book that is full of all the words I wanted to say to your people on the days of significance; birthday’s, anniversaries, your deathday, only to have come unstuck at the keyboard every single time. So I wonder why it is that I should be able to write today – I wonder this because to me it is somehow the least significant date of all. It’s the one I feel almost ambivalent about, the one where you were sent away and turned to a pile of dust, the one where your pieces were finally taken, the one where I supposedly said goodbye (although I know now I will probably never do that).

But perhaps that is the very reason I can write today. Because even though our anniversary was a bittersweet affair in retrospect, the day was love filled and the tears spilled were of happiness. Because even though your birthday was hard, it was a reminder that you were here, you were born, you grew up, you walked this earth and you loved, you bore children, you had a life no matter how short. Because even though to think of your deathday and the moment you finally left me is, without doubt, the most difficult, painful memory of all, at least you were alive for most of that day. Because even when you left, in the days that preceded your funeral, your essence still filled the rooms.

So perhaps it is the life of you within these moments that I have found so hard to write about. A funeral is none of these things. It is about a void, an ebbing, a release and a going, memories, a flicker of a flame and the loss of that light. You are gone and I know that I know that, but a year on you are still as alive to me as ever. That is pain and pleasure in one.

So in homage to you going I want to publish your playlist from the funeral. You sat one night and reeled off these tracks and I was amazed at your abilityto conjour tracks from mental oblivion – mine would be so bland in contrast. But you did and here they are. For those of you on Face book I will try and link the track list through that. I include in this uncorrected mistakes in this list - it makes it a more fulfilling journey of discovery.......

Listen and remember him and above all else – ENJOY!!

The Cure Just like heaven – 12” version (not live)

Joy Division Love Will Tear Us Apart

Sonic Youth Teenage Riot

The Church Under the Milkyway

Nancy Sinatra Jackson

& Lee Hazelwood

The Jam Thick As Thieves

Candy Station You’ve Got The Love

Massive Attack Unfinished Sympathy

Lee Hazelwood Poor Man

Simple Minds Speed Your Love

Blondie Union City Blue

Royksopp 49%

Pogues Sally Mcnally

Radio Head An Airbag Saved My Life

Jimmy Cliff Many Rivers To Cross

New Order Everythings Gone Green

Jesus And Mary Chain Just Like Honey

Johnny Cash Ring Of Fire

Elvis Suspitious Minds

Grandmaster Flash White Lines

The Stranglers Always The Sun

The Killers Read My Mind

Stakker Humanoid Stakker Humanoid

Bowie Changes

Soft Cell What

Lotus Eaters First Picture Of You

Echo And The B Killing Moon

Clint Eastwood and Stop That Train

General Saint

NWA Express Yourself

Generation X Dancing With Myself

My Bloody Valentine You Made Me Realise

My Bloody Valentine The Drive

My Bloody Valentine Cigarette In My Bed

House Of Love Christine

Sound Garden Black Hole Sun

Radiohead No Surprise’s

The Specials Gangsters

Doctor Almintado Poison Flower

Foxy Brown Fastcar

Wheatus Little Respect

The Smiths The Is A Light That Never Goes Out

A Guy Called Gerald Voodoo Ray

Primal Screen Loaded

Inner City Good Life

The Damned Smash It Up

Ladyhawke Back Of The Van

Kings Of Leon The Bucket

Dolly Parton Jolene

Kenny Rogers Ruby

I Hate Hate Razzy

Adam And The Ants Stand And Deliver

Madness Must Be Love

Faithless Insomnia

OT Quartet Hold That Sucker Down

Marvin Gaye Your All I Need To Get By

The Pixies Monkey Gone To Heaven

Madonna Like A Prayer

Five Get On Up

Tony Basil Hey Micky

Blondie The Hardest Part

Jackson Five Blame It On The Boogie

O’Jays Lovetrain

Beachboys I can Hear Music

Prodigy Your No Good

Moby Feeling So Real

Richie Havens Without Love

Lou Reed Vicious

The Only Ones Another Girl Another Planet

Groove Armada Blue Skies

Daft Punk Da Funk

Talking Heads Born Under Punches (Remain in Light version)

Flock Of Seagulls Wishing

Billy brag New England

Leftfield Storm 3000

The Cure In Between Days

Game/50 Cent Hate It Or Love It

De La Soul Eye Know

Motorhead Ace Of Spades

Nirvana In Bloom

RadioHead Creep

Depeche Mode New Life

The View Don’t look back into the *

Elton John Your Song

Joy Divsion Don’t Walk Away

Rod Stewart Baby Jane

John Lennon Starting Over

It’s Immaterial Driving Away From Home

The Smiths Please Please Let Me Get What I want

Bowie Sound And Vision

Ashes, pieces, dust

I did it.

It was a vile week of grey skies and perpetual rain that seemed never to stop. I had to make an appointment and when the day came the skies cleared and were bursting with blue and white. I like to think you had a hand in that. I was nervous and it felt strange going back to the cemetery. The place where I said goodbye to you. I sat in a stuffy room and waited. There were displays of fancy urns and leaflets about all the different things you can do with dust. Scatter it in remembrance gardens, make it into diamonds and wear it, keep it encased in silver or gold. I suddenly felt a bit self conscious about the Tesco bag I was taking you back in. I could have at least bought a Waitrose one, was I being disrespectful? I knew you would tell me to stop being daft - dust is dust "Take me out in a bin bag" you said. I felt a bit better.

I hated the room and, unfairly, the woman that scrutinised my signature and said they didn't match. "I haven't been a Stevenson long", I said , " I haven't really practised my signature". She released you to me. I waited till I got outside before I let the tears fall. I walked across the road and onto Wanstead Flats, I cut through some trees, silver, brittle sunlight streaming through the branches and found myself atop a little hill looking down at a beautiful lake filled with ducks and geese. I crouched in the still sodden ground and took you out. You were heavy. I want to see you. You are coarser than I thought and there is a lot more of you than I imagined. You are grey and if there is one thing you were never; it is grey. This is not you but it's the closest I have been to you physically for 4 and a half months and it's comforting. There are people milling around, feeding ducks, enjoying the sunshine and each other's company. I am crouching in mud on a small hill muttering to a box of dust. I think it's time to move on.

I feel better. I'm so glad I came to get you. It was the right thing to do. I stride across the flats. I swing you along with my steps - I think you might enjoy the ride. I'm actually starting to enjoy having you by my side. I decide to go to Tesco's and get some shopping and a coffee. I put you in a trolley and chuckle to myself. You would have thought this was hilarious. I sit with you next to me on chair in the coffee shop and whisper my mischievous thoughts to you. When ever I go to the village of Leytonstone I bump into someone I know and I really want to now and pretend I'm taking you out for a little excursion as if the most normal thing in the world. I know you would love this joke. But I have no one to practice it on which is slightly disappointing but probably for the best.

I brought you home in a bag with wine and prosecco to toast your homecoming. It's not you. I know that and I have never been into the reverence of the pieces left behind. I have been to my father's grave three times in 18 years as these things mean nothing to me. People live on in the memories and the love in your heart. But it's nice having your pieces here for a while. Cassidy and Kitty are curious but underwhelmed. I invited Cassidy to come to pick you up but he declined as he said it would be boring unless he got to see the incinerator. He is your son in more ways than the slenderness of his frame and the depth of his mind.

Your pieces are home

Anniversary

………well I am going to complete the speech I promise my love but while I work on that I just wanted to mark the fact that yesterday was our anniversary. It would have been fourteen years.

I can remember the first one we celebrated in India. We sat drinking and watching the sun set on ‘Lighthouse’ beach in Kovalam. We watched the sea crash under strings of twinkling, glowing, golden beads. I made you a card and we ate seafood.

There were others I can remember and many I can’t – but that’s a good thing! More than one was spent drunkenly going through old records, a few spent eating expensive food, one of them may have been responsible for Cassidy and one I was pregnant during but still managed to sip champagne. Last year I cooked you a Thai feast and you drank some red wine and more than one Jack Daniels and Coke. I wrote you another card. This one said something like ‘ 13 years – unlucky for some but not for us because we nearly lost each other and here I am writing you another love letter – I will not let you go again’. Well how wrong I was because when the time came I had to let you go.

13. A number tainted with negativity and touched with superstition and doubt. Surely we should have known it was destined to be an unhappy year. We started it on a back pedal – how could it have ever moved forward under that kind of dark, miserable cloud.

And it has been a terrible year, one of death and sadness. The sum of its parts has been unlucky but it has also been a year of celebration. It has hosted some of the most uplifting and positive moments of my life. It has been a year where I have learnt more about love friendship and their infinite capacity. A year where we have known the inner strength we possess and the wonder of ourselves and our children. It was an extra year granted to us, not but a higher order, but by you Paul. When the doctors said you would die in the ITU of Whipps crosss you didn’t, when they said the cancer would take you so many times you defied it and you gave us a summer of laughter and hope. So I would say that, depending on how you look at it, the number 13 has been very, very lucky for us.

So Happy anniversary my love.

My darling,

When you were suddenly taken ill last November, when you were hooked up to that life giving but hideous ventilator that bleeped and flashed endlessly with alarming constancy. When you were in the ITU of Whipps Cross, I found it difficult to keep the dark thoughts at bay. My mind would wander during the day and I would have these waking nightmares of imagined, hideous scenarios. The most recurrent was standing up at your funeral and giving a eulogy. I would find myself running through the words and weeping at inopportune moments, at the checkout in Tesco’s, walking home after the school run, stirring spaghetti or during story time. More than once I actually slapped myself around the face. Partly to snap myself out of the madness and partly because I was so cross at myself for thinking such miserable, hateful things. I hesitate in telling your people this as it’s so personal and also makes me seem quite unhinged. But I want to try my best to give them a window to the emotional side of this journey. This was our life and if I’m going to do this confessional shit I may as well go the whole hog!

I digress.

So I found a way to deflect this particular nightmare by mentally subverting the funeral speech into a wedding one. My eulogy became a celebration of what we have rather than the past tense. And you know what? It worked. Then when we decided to get married I really wanted to say a few words, but to be honest I bottled it and I’m glad I did because I’m not sure I would have enjoyed the day quite so much. Then your funeral loomed and I vowed to do you justice then by saying all the things I wanted to. The little bits and the big. I wanted to tell your people about the beginning as well as the end. But I could not speak. I said a lot that day but I did not speak.

So if I had done a speech it might have gone a little like this……..

My love,

To write since you died has been too painful. I try and try but my fingers falter. But it was like this when I started this blog except that then I had you to egg me on and push me forward. I know I have to try and be strong again. When we started it was to keep you in the forefront of everybody’s minds. We needed love, energy, good thoughts and vibes and we got them tenfold. Everyone chanted and prayed and cried and laughed with us. All of your people waited everyday to hear your news, they were here when we celebrated your remission and they were here when you had to go.

I have only realised in this last couple of empty months that this whole fucking blog thing was as much about keeping me alive as it was you. It’s a strange thing that it’s easier to be intimate with a thousand faceless people than it is with the person sitting next to you. So I want to carry on if that’s ok? I have things to say about the darkness but I want to keep you alive and there is also the story of us. The one before you got sick. The one where we lived happily ever after, the one we talked about which started on Dean Street and ended on a verandah in Thailand in our dotage, sipping ‘Sang Thip’ and setting off firecrackers till dawn.

Each word to you feels clumsy and has been reviewed, amended and deleted a million times. I want to do you justice With every letter I have punched tonight I have shed a thousand tears. Do you think that if I keep typing and typing they will eventually run out?

I might try…………

I'm trying

to write a blog. I compose a million a day in my head and today I got this far........

Here

I am here, I am here - I'm just thinking..........

Goodbye

The day dawned with grey light and dread in my heart. If I hadn’t escaped the house then I might have gone mad.

I have to say "Goodbye"; I have to say "Goodbye".

I meant to have a glass of Dutch courage but I forgot. There were family and friends and mostly I wandered around looking for things I had dropped and needed and seemed really important but actually weren’t. Then the car came. The one with the box and the flowers I didn’t want; because blooms should be cheerful not gloomy. I told Cassidy the box with the shell inside was here and he slid down the banister in one go and jumped down the path and told me the flowers were pretty and suddenly they weren’t so gloomy after all.

I have to say "Goodbye"; I have to say "Goodbye".

We drove and we arrived and although I knew there would be people waiting, my heart flipped when I saw the flowing sea of faces. Eyes and lips moved but I kept white noise close and the sound of Cassidy and Kitty closer. Going in was hard. Seeing him arrive was strangely easy.

I have to say "Goodbye"; I have to say "Goodbye".

The words were heartfelt and love sent, I tried hard not to listen sometimes but the true ones burst through despite my efforts and they will stay with me. I heard no tears and I was grateful. The curtains closed because that’s what they do and it’s supposed to be poignant but seemed pointless. Keep them open, let’s linger, let me walk away.

I whispered “Goodbye”, I whispered “Goodbye”

The pub, his people, they came and drank and talked and I danced. It’s a blur to be truthful, a wonderful whiskey blur of stories and laughter. Old faces I’ve met and some I haven’t but know now. Family in arms and friends weeping happy tears. What a crack, what a wake, what a joy to celebrate.

I said “Goodbye”, I said “Goodbye”.

3 words

When the woman who is holiding the cermony asked for three words to describe Paul I found it really hard to narrow it down so I asked for you help

I thought I would post them here for you now

AJ Butterworth : Gentle, proud, and witty.

Nathan: fantasy football god

Becci: Generous, caring and incredibly knowledgable

Gaz: Everybody's Best Friend!

Denise Retallick: intelligent, selfless, fun

Kaye Butterworth Altruistic. Erudite. Handsome

Natalia: Husband. Father. Friend

Jane Harris: Hannah, Kitty, Cassidy.

Natalie Murray: Kind, Generous and warm hearted

Tamara Giltsoff: Generous smart stoic

Wendy Cave: Courage, Wisdom, Wit

Jessie Intellectual, brave scotsman

Tom Foley: "3 words ! doesnt even touch the sides !

check all of these in your thesaurus.........
1 honest.. 2 cantankerous 3 gregariouus 4 special 5 the very best pal all of us are so very blessed and lucky to have known paul and to keep him strong in our hearts always !"

Derek Riddell: caring, happy and fun

Paula Baker Intellegence, Integrity, Inspiring

Jo Hammond: Unassuming, glaswegian, gentleman

Beth: Courageous , loveable , funny

Fran: Rush, Hour, Laughing

Mug: Man and Superman

Rory: Honest

Amber: integrity. wit. Kind

Aiofe: Intelligent, sarcastic and heroic x

Ali: Wise, adventurous and loveable.

Mum: Love,lamb and laughter

Mine will always be

( I've taken mine out because I did it in a rush and looking back I want to put the right words or none at all)

p.s I can and will add to this list so if you want to send your three words then do to hannah_mackey@excite.com

From Paul..........

Well folks, by the time you read this I’ll be either having a beer or orange juice with Jesus, Ganesh, Allah, Ron L Hubbard, Buddah or a wealth of others we have never thought of. I prefer to think that the laws of physics state that energy cannot be destroyed – it can only change form. So if I can help your home grown veg grow that extra tomato, or help a pretty flower grow or give you the strength to stumble home those extra few yards on a battered Friday night, then job done…

The question is one of consciousness and if there is one of some sorts, you can all be sure you’ll all be a very big part of mine still. The disease was the disease, it just does what it does, but the amazing thing about it all is the positivity that I have seen, felt and heard it generate. It’s brought people out of the woodwork, that for too long we find ourselves too immersed in the here and now of jobs and kids and London and any old excuse for not being in touch with and puts you in contact without it being through sympathy or fear but through love and sharing of joyous things.

I think everyone stopped at some point and thought of the things that make life good, and that is what it’s all about. It’s all about family and friends and love and happiness. The love and support that we have experienced thought this has been beyond words, but not always tears.

If ‘God is love’ which is what they all say, then I have God in my life with the people I have around and about me. I have no regrets in life (with the obvious exception of the terminal disease). I had a brilliant time and loved it. I was lucky enough to meet my soul mate and share a part of my time here with the two most amazing kids ever. The people, the upbringing, the drink, the travel, the family, the beauty, the ugliness, the times and places, the list is endless. The little things and the laughs, but it’s always about the people, and you’ve been my people and I thank you from the bottom of my heart for what you have given me.

I’ve written something else for Hannah and the kids because as I write this it’s without fear, but when I think of them it’s still sadness or rather my heart bursting with love for them that’s the emotion. And to be honest this little splurge is for you lot.

So there you have it. Be happy, and if it doesn’t make you happy don’t do it. I love you all, really really,

No you don’t, there is more…………………

There are too many individual moments with too many individuals that I just don’t have the time to share. So think of when we have laughed together, or cried together, or danced all night, or barked at the moon, or watched the sun come up, or randomness galore. And they are probably the same ones I’m smiling about. But I might just have to mention a couple –

Lisa – flying saucers over Goa

Wendy and Steve fight – to be told on arrival at the flask of having a steak tartar and tuna salad order.

Thomas Foley’s Sunburn the first day I met him at ‘Blues’ after his charity walk to Brighton. With no hat or suncream.

Ali – Lady Di’s funeral.

Too many, too many, never enough. Without everyone’s chanting, praying, thoughts and best wishes and without the financial and emotional support that you have all provided, I can’t begin to think what the last 10 months would have been like. With everyone’s love and support I’ve had the best chance to fight this thing and win a few battles along the way and concentrate on the things that matter. For this, there are no words big enough, but two little ones are all I have – Thank you.

I have just to thank Noah for my mustard seeds blessed by the Dalai Lama, they are, without doubt, the most auspicious thing I have ever consumed.

And that really, really is that.

I love you all forever.

Paul

He's gone..............

Jam Sandwich!!!

I just wanted to do a quick blog because there are some (well many) people I need to thank on behalf of Paul and myself. When we suggested fundraising for the miracle cure everyone went mad with the money making schemes with such speed and enthusiasm it has been quite breathtaking!

Despite the fact that he is too ill to now take any drugs, some of those events have and are going ahead. So I would like to thank the Scottish contingent for putting on a sterling bash in Glasgow and for all those that attended and those that couldn’t but still supported the Stevenson clan. Also Anthony Whitehouse who used to own ‘Blues’ – the restaurant where Paul and I met and where it all began…..He rang me out of the blue yesterday having not spoken in years to say he did a (not sure how many but a good few) K run for us!! Awesome!

Also the crazy reprobates that worked on and off with him over the years at the fine line and the Telegraph, that worked and played hard with him and (I should imagine) listened to him rant late into the night – are holding a bash this Friday. The details I have cut and paste from Facebook for you here:

--------------------------------------------------------------------------------------------

Charity gig with Jam Sandwich

When: Friday 23rd October 19:00 – 23:00

Where: The Telegraph

11 Telegraph Street

London

Our dear friend Paul Stevenson- a top lad- has been bravely fighting cancer for the past year. He is diagnosed with T-cell Lymphoma, a highly aggressive form of cancer. Having exhausted most of his medical options, doctors had hoped that Paul could try a new FDA drug which would increase his chances of beating the cancer. Sadly, the drug has come a little late and Paul is now at home, spending time with his family- minus the drugs and chemo which seems to make him sicker.

As many of you know, Paul was the beloved manager of the Telegraph for years. We have teamed up with The Tele, and the infamous band Jam Sandwich, for a night of mayhem with the best motive ever- to raise money for Paul and his family.

We will be taking donations at the door (suggested £8). As Paul is too ill to receive the drugs that we were originally trying to raise money for, the money raised on the 23rd will go into a trust fund for Paul's children, or to a new cancer centre that is severely underfunded. Two excellent reasons to join together and raise some funds. We want to say however, that we are still chanting for Paul to have a miraculous recovery, so our thoughts and love and positive vibes are with him.

We also have excellent prizes to be raffled off- all proceeds going to the Stevenson family. Prizes include: a bottle of champers, a dinner for 2 at the Vintry (£100), a nights stay at a Jury's Doyle hotel, and buffet for 10 at the Cape Bar at St. Paul's! Woop woop!

Jam Sandwich are going to rock the house, so dancing shoes on! Bring your friends- it's going to be a right hootenanny!

Paul is such great guy with a lovely family- this will be the best £8 you will spend in a long time.

For more info, please contact Amber on 078 878 28 111 or Aoife on 075 068 44 302

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There are so many people to thank today and to come so if anyone is missed here and now then your time will come. We have been so lucky with the constant support from friend’s, family, The incredible Uncle Adam and a mysterious bunch of philanthropists – you know who you are – which is good because I truly don’t!!

There will be more to add – in the mean time I must get back to the man ……….

Arse

I must write a blog, I must write a blog, I must write a blog – my chant has changed to this over the last week or so. So here I am – and here are all of you? Or are you there, helllooooooo? It can be odd at times talking to the ether, not really knowing if anyone is listening to you. I write the words on my screen and with a click of a button I expose my arse to the world with very little thought as to who actually sees it. It’s quite liberating really as I have always been quite protective over who gets to see my bottom!

So Paul came home on Tuesday – they turned his arse around in a day or two as I think the docs are of the same mentality as us – that he is best off at home. The first weekend we spent together really highlighted that fact. I think we both felt apprehensive about going from total care on the NHS to total care at home. It should be the easiest thing in the world but I suppose we haven’t spent that much time together over the last year so it takes some adjusting.

Homecoming is always amazing. But this time it is laden with sadness because ‘coming home’ means coming home to die. That’s the upshot, that’s the SP, that’s the reality. Probably some of the reason I have found it hard to write recently is because I would have to say those words. But tonight I feel ok with them. Not happy and not resigned and certainly not accepting but to a degree aligned with them..

There are no drugs that can save him. The miracle cure in the states came just a little too late. He has said that even if he could get it he’s too tired to fight. He hasn’t given up the day to day fight of staying alive and enjoying his family and his life but he’s done with hospitals and drugs that make him sicker than the cancer and sometimes bring him closer to death than the disease.

So he’s home.

So we carry on.

So we live a day up

and

a

day

down

Love

I haven’t written because my fingers are leaden and anyway Paul has been home since Friday so I have been rather preoccupied.

I went to see the consultants last week. I was a little concerned because Paul was quite confused and I wasn’t sure if it was because he still had a bit of an infection or what and really they aren’t sure either – it may have been a combination of a lot of things. Anyway he really hasn’t bounced back after this last bout of illness. Not like he has in the past. It’s like it’s knocked the stuffing out of him. He’s so tired and practically bed bound now (though I did wheel him about a bit today). The upshot is that I don’t think they will be giving Paul any more drugs as treatment for the cancer. Not unless he makes a miraculous recovery – but if I’m honest I’m not sure even I believe that’s going to happen this time. So we really are into palliative care and monitoring him to make sure he is comfortable. He’s still slightly jaundiced so that might mean his liver is a bit damaged from all the drugs. They were really supportive about getting Paul home and they went into a flurry of activity arranging it. So we had a hospital bed delivered and wheelchair and portable oxygen etc

It’s been so hard to write this because I don’t want anyone to give up hope and I’m still chanting frantically whenever I stroke his hair or watch him sleep or see the kids rolling around on his bed. I have never chanted so hard in my life – I’m just not sure if I’m chanting for him now for myself now because I don’t want to face the horrible truth – that he will die and this bastard fucking cancer will have won.

He’s back in hospital tomorrow and then will hopefully come home again mid week

Oh I hope I don’t sound like I have given up, I haven’t – I believe that every single day that he is still here is the most beautiful, perfect day in the world, I believe that the love we have will survive even death, I believe that Paul will never truly leave me anyway……..

zzzzzzzzzz

I have been remiss I know, silent but quite frankly shagged out beyond all recognition. I feel my fingers are punching the keyboard as if I have hooves for hands - in fact hooves in boxing gloves. Hooves in boxing gloves, tied together with liquorice. Did I spell that right? I hate the stuff anyway......

Paul is ok - jaundiced, tired, slightly confused but not running temperature. He's ok.

You know what? I thought I would attempt a blog tonight but these hooves are really getting in the way. The hooves and the head that is lolling scarily close to the monitor.

Sorry

Will def try again tomorrow x

ups and downs

Paul has been up and down over the last few days. His heart rate really hit an all time high and his temp has been fluctuating. Also his blood pressure dropped to the point where they were talking ITU for the night to monitor him but it’s come back up again and it looks a little like he may be coming out of the infection or the antibiotics are kicking in. Subsequently they have not been giving him any of the new drug. I think they have their big meeting tomorrow with consultants so I’m figuring they will be coming up with a next step if he looks to be getting over the infection.

I know it’s their job to be ultra cautious but God it’s annoying when they go into panic mode……He’s uncomfortable and disappointed that he can’t come home but he’s gone through these infections before and come out the other side – He will do it again

And thanks for all the responses re fundraising - we need to get organised!!

It’s a pain in the arse that whenever we try and have a weekend together Paul gets a bloody temperature. Same thing has happened this weekend – he was hopefully coming home for the day tomorrow but his pulse rate is ridiculously high and he has spiked a temperature a couple of times. They have stopped the drugs just to see how he feels – they are worried it is the drug that is pushing his heart rate up. He’s worried that they are going down that well trodden negative road again. We know that they are commited to making him better but it’s hard when they do ‘those’ conversations for the millionth time.

On another note we heard yesterday that the drug that was trialling in the states has been give approval by the FDA that means it is now available in the states. I have a gut feeling that this is his best shot. I don’t know at this stage how it would work in terms of administering the drug but I do know it would cost a lot of money. I would love it if you could all get your fundraising hats on. I don’t know at this stage how much we will need (I’m hopefully going to get an idea soon) but in the mean time if you could start the ball rolling that would be brilliant.

I know I am being vaugue as regards what we need but I’m thinking that if you were all prepared to raise money now and if for some reason it’s too late for Paul or it doesn’t happen then we can donate any money raised to Cancer Research. Does that sound fair and ok? So please, please sort out your quiz nights etc. I think I would rather have and not need than the other way round – someone will benefit from any money raised.

My number is 07968 197 311 or you can email me on hannah_mackey@exicte.com

If you need to contact me about fundraising

Lets do it!!!!

Onwards

We had our mini moon which was only marred by the fact that Paul had some kidney pain and had to go into Whipps Cross to get checked out on Saturday. It’s just so lovely to have him home even if only for a couple of days. Just the sound of him pottering upstairs or blowing his nose or him and Cass playing robot rage on the computer. We lay on the bed on Sunday and wished we could freeze time, just to stay in that moment of perfect contentment for a while.

But time marches on and he was back in on Monday. He started the new medication yesterday. It’s an hour infusion given every day for 28days. So we shall see what happens with that.

Forwards and upwards and onwards………

Mini Moon

We waited all day for the results – I think I drove Paul a little mad with my impatience. But what they said was no real surprise. The cancer has still progressed and is showing in other nodes around his body – but it isn’t ‘marching’ on as Paul puts it. We thought there was little chance it had miraculously stagnated so we were prepared for the fact it would be on the move again.

They don’t think they will ever be able to push it back into remission so the idea is to keep him healthy for as long as possible. They discussed starting him on the new drug tomorrow but they decided it wouldn’t make much difference if they start it on Monday so that he can come home for the weekend. We need him here, he needs to come home – we can have the honeymoon (or mini -moon as Natalie called it) weekend we wanted.

Paul is in pure indignant ‘fuck the disease’ mode which gives me the boost I need to be his faithful sidekick. ‘Super P’ and the ‘Marvellous Midget’ ride again in their hardest mission to date – to rid the world of ‘Master T-Cell’ and his deadly lymphocytes! He may be lurking in the dark alleys and lonely backstreets of the sleepy city, but the dynamic duo are always watchful, always alert to the sounds of his bastard footsteps………

Keep the faith people - we are xxxxxxxxxxx