The T-Cell Chronicles

2010-11-03T15:52:00.000-07:00

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

2010-03-11T14:02:00.000-08:00

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

2010-02-07T15:54:00.000-08:00

………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,

2010-01-21T15:09:00.000-08:00

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,

2010-01-14T15:52:00.000-08:00

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

2010-01-02T16:04:00.000-08:00

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

Here

2009-11-19T08:16:00.000-08:00

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

Goodbye

2009-11-05T15:16:00.000-08:00

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

2009-11-03T05:38:00.000-08:00

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..........

2009-10-26T17:10:00.000-07:00

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

2009-10-22T17:56:00.000-07:00

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

Jam Sandwich!!!

2009-10-20T06:47:00.000-07:00

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 October19:00 – 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

2009-10-18T14:57:00.000-07:00

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

2009-10-11T15:52:00.000-07:00

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

2009-10-06T14:59:00.000-07:00

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

2009-09-28T15:00:00.000-07:00

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!!

2009-09-26T15:15:00.000-07:00

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

2009-09-23T07:28:00.000-07:00

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

2009-09-17T14:56:00.000-07:00

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

Hanging on a string......

2009-09-16T13:21:00.000-07:00

Have been told we won't get the results till tomorrow........

Stuff

2009-09-15T15:18:00.000-07:00

Just thought I should fill you in on the clinical stuff....My second to big toe has been completely numb since the wedding due to stupidly high shoes, I lost my mind and memory after one tequila shot but it returned about 10 mins later, Kitty got a cold because she stripped down to her pants, t-shirt and a headband at the reception, Cassidy sustained minor injuries by launching himself off the bed in the honeymoon suite and Paul - well the cancer hasn't brought him to knees but I think the wedding might have......

OK I know the wedding has been a little overshadowing the cancer thing but that's been a good thing. Paul actually suffered quite bad dehydration and got a bit of an infection so our honeymoon plans of being at home for the weekend didn't happen but he's felt much better since he went back in. He had a PET scan yesterday so we are waiting the results of that which should come through tomorrow which will tell us whether this chemo has done anything at all and they plan to start him on a new drug next Monday (I can't remember the name) but it's an inhibitor instead of a chemotherapy drug . I'm trying a new psychological trick for the upcoming results. I figure if I prepare myself for the fact they might tell me he only has two days to live then anything else will be a bonus - right?

Och anything is worth a try - will keep you posted x

Da Da Da Daaaaaaaa

2009-09-12T15:49:00.000-07:00

On Thursday I spent another night overlooking Tottenham Court Road. Except this time I watched the ethereal light of the UCH from the opposite side of the street – from the honeymoon suite of ‘The Grafton’ hotel!

For those that don't alreadyknow Paul and I got hitched in a small ceremony in the chapel of the hospital. We had talked about doing it before but I guess with all that’s going on it was never top of the list. But then we got talking again a couple of weeks ago and suddenly it seemed like a shotgun wedding was just the very thing we had to do! The10^th sept was Paul’s 40^th birthday so that leant a certain weight to the date.

The day was magical. The registrar was late, the priest was brilliantly bonkers, there were tears, laughter, pink bubbles, chilli vodka and fairy cakes. I had shoulder pads, sequins and high heels and Paul had jeans, converse and a killer jacket. The kids were wild and so were some of the adults, I seemed to speak to everyone and no one in a drunken swirl.

Thank you everybody that came and helped us celebrate and sorry to those that we were unable to invite – of whom there were many. We always envisioned one of those rambling country weddings but time and the fact we had to marry in the hospital chapel meant we had to pare it down. Maybe one day we will have a big party to celebrate and invite everyone!!

Special thanks to those that helped beautify me, organise flowers and decorate, look after kids, open champagne and listen patiently while I ranted! Girls you know who you are…….thanks for the amazing presents and cards and well wishes……thanks to boys for the speeches and photography and other sundries and to Nathan and Caleb for looking so smart…thanks for all the donations that made it happen….thanks to mum and Jess for the constant and unremitting support and time and effort with Cass and Kits who love you as much as I do….thanks to the amazing families we both have! Oh there is so much to be thankful for and the most thankful I should be is for my handsome husband…..hurrah I can say that now instead of ‘partner’ (urgh) or ‘boyfriend’ (not right)……

Tiredness has crept up again will post more in the next couple of days x

Hannah Stevenson xx

OK

2009-09-08T15:36:00.000-07:00

Quick one just to say Paul is patiently taking drugs and nothing untoward is happening at the moment.....thats all I can write because I am a bit drunk x

Light

2009-08-31T14:54:00.000-07:00

There is probably very little to recommend about the 16th floor of UCH. If you happen to be party to the stunning views and the care and attention of the amazing medical staff, then you are probably pretty fucking sick with some kind of cancer or another. Not the best reason to enjoy the spoils of room service and constant care. But at half past 6 on Saturday morning I enjoyed a moment of clarity and beauty that, had I not been on the 16th floor, I would otherwise have missed.

I woke sleep worn and dream torn to the early morning light spilling into the room. The light of a bright, blue, sunny morning tinged with gold and pink. A light refracted and dismembered by the blinds and glass slats that fill Paul’s hospital window. It was the kind of light you enjoy on faraway tropical beaches, the light you see from an aircraft window when you are soaring above the clouds in the quiet sky, untainted and pure. London is not a place usually viewed from the top down I’m usually peering at the sky from a twisting Victorian street. From the 16th floor the light bounces nowhere but up and all around. Seeing a sleepy city swaddled in mist and ethereal light - well it’s quite magical.

It was good to experience a night in the hospital. Obviously spending the night with Paul is the biggest plus but also just to see his routine, the obs checks and the rapport with the nurses. We got fish and chips and gherkins and watched telly and fell asleep across the way from each other. And in the morning I got breakfast and we watched all manner of crap Saturday morning telly. When I spoke to him tonight I could envision where he was sitting the light he had on and how it makes the room feel. It’s good to know those little details.

There’s not much to say treatment wise. Sit tight and dream of miracles and know that that power of my dreamboat is beyond the measure of doctors. I have been told to say goodbye to Paul twice before, he’s still here and he will defy them again.

I also know you read this blog from your hospital bed so I’m blowing you a kiss as I write Paul……..

Hxxxxxxxxxxxxxxxxxxxxxxxx

OUT LOUD

2009-08-29T15:06:00.000-07:00

Just wanted to check you are all chanting.

all together now:

FOR THE LOVE OF LOOOOOOOOOOOOOOOOOOOOOOOOOOOVE

For the love of life.....

2009-08-27T15:42:00.000-07:00

It’s been a hard few days. We had a meeting with the consultant on Monday and we were told that although they were hoping to get certain drugs etc (the pralatrexate thing hasn’t worked out – they won’t give it on a compassionate basis) they really think that Paul’s cancer is incurable and that though they will keep treating him and keep trying to prolong his life they do expect the disease to take over sooner rather than later. I know these are things that have been said before but I suppose now that we are nearing the end of the treatment and choice of drugs it becomes more and more likely that the disease will win………

I know this sounds like defeatist talk – it isn’t. There is not a minute of the day when I do not think about the future with Paul in it. It’s just that for the first time in this intolerable fight I have had to think about a world in which Paul might not be. I have obviously thought about these things in my most dark moments but both Paul and I have had to be – well practical. If you don’t talk about worst case scenarios and they happen then you are fucked. You can’t open up conversations when someone is gone so we had to do the some of the hardest, frankest and most painful talking in our entire 13years of being together.

The hardest decision was to tell Cass that his daddy might die. Christ it pains me just to type those words. But I am so proud of the way we did it, our bravery and most importantly the bravery of my two boys. Paul told him that the doctors were still trying to treat him but that they thought the cancer might be too strong and that he might die. Well as you can imagine, he was inconsolable. When he had finished sobbing he managed to ask a few questions. The first was “Who will play robot rage with me?” the second was “Who will be my daddy then?” and the third was “Who will answer all my questions”.

It was the hardest thing we have ever done but it also relieved us of a pressure that has been building up for so long. The pressure of guilt and fear that if we talked about ‘arrangements’ it would mean we had given up on each other, that we were accepting a certain fate. But by talking about the most hurtful things they seem to be less frightening. Shit we all know that talk is good, it demystifies and deconstructs the dark side of life. It doesn’t breach the yawning chasm that I have for a heart when I think of a life without Paul but it means we are still doing things as a team. Cass needed to hear from us both that the worst might happen but that he would still be safe. We could all learn a lot from how a 5 year old takes the news that his daddy might die. He’s has been amazing. I know that if it does happen there will be other things to face but at least we have been truthful and honest with him and maybe that will somehow help to heal the wounds should the worst happen.

He has started a new round of chemo and I urge you all to have your blind faith, to chant to pray, to will the odds to fall on our side. This is what we want. I believe in miracles, I know you do too. His odds are about the same as winning the euro millions but someone ends up a trillionaire – why can’t it be him…….

For the love of love…..for the love of life….

For the love of love....

2009-08-22T15:52:00.000-07:00

Flipping heck my brain hurts it has had such a stretching over the last week or so with all the intense research. It really has been like chucking a jug of lard on a running machine and expecting it to run a marathon. I will be the first person to say that child rearing is the hardest job I have ever done – no other has driven me to the brink of madness and the comfort of drink in the same a way! It’s emotionally and physically taxing and that’s enough quite frankly but it is not necessarily a tax on the brain (questions on quantum physics from Cassidy aside).

So the last week of - trawling the internet reading medical data and reports that are pretty indecipherable, sending emails to Singapore, Italy, Denmark and the States about clinical trials, speaking to the Vice president of a pharmaceutical company that calls you from New York to discuss a possible drug option while Kitty hangs off my leg asking for sweeties – well it’s all been a bit too much for my flab bucket of a brain. Though, emotion of the current situation aside, it has also been really, really interesting and I’m feeling so much more informed about Paul’s disease.

One of the promising looking drugs that I have found online is one called ‘Pralatrexate’. It’s been popping up everywhere and after a bit of digging I have found out it’s been on trial in the US and looks really optimistic as an alternative to the current chemo options for Peripheral T-Cell Lymphoma. But they are currently waiting on a decision on licensing for public use from the Food and Drug Association and that may or may not happen in September. I had a great conversation with the vice president of the pharmaceutical company who have invested in this, he explained all the red tape issues and the hopes of it being licensed and also that they are actually trialling the drug again in conjunction with another type of chemo at the moment. He said if I want to explore the possibility of bringing Paul over then he would help me find an ‘investigator’ (I think this is the person who runs the trial for each institution), to see whether he might be eligible. Which is obviously amazing, but also very daunting when thinking that we might have to relocate to the US for a while.

But, in the meantime Paul has had his chat with the consultant yesterday about the plan in terms of his next drug option and blow me if they didn’t say they thought that ‘Pralatrexate’ was the way forward. They have suggested the same regime that he would have followed had he got onto this trial in NYC! Apparently although the drug isn’t licensed yet they can apply for it on compassionate grounds because of the promising outlook of the drug for Paul. How amazing is that? Not only has it confirmed that UCH is just the most shit hot medical institution ever but it has also reassured me that my hours spent researching have been worthwhile……

So we have to have a meeting with the consultants next week but all being well he may be able to start the regime pretty quickly. Shit I thought that the docs were going to advise palliative care and tell us it was all over but it isn’t. Even if they had I would have told them they are mad and they don’t know Paul and we are not ready to lie down and die– but as it turns out I don’t need to. We have been given a glimmer and that’s enough for us. So fingers crossed that all goes smoothlyish next week

All chant : “For the love of love – give Paul and Hannah a fucking break!”

Thank you x

2009-08-21T02:41:00.000-07:00

Ok won’t delay this anymore – the results of the scan were not good. They appear to show that the cancer has progressed and may have spread to peripheral nodes and they think it may be back in the bone marrow – FUUUUUUUUUUUUCK! What that means in terms of treatment we will find out today from the consultant and also next week when all the brains get together and discuss plans…..

I do know that we don’t really have many drug options left – Paul says there is probably one more roll of the dice. In the meantime I have been spending a lot of time on the computer trying to find trials along with an army of friends and family. My mum found, what looks like the only trial being conducted in Great Britain (A drug called Romidepsin) which he will ask about today and I have found a few globally. It’s no surprise that most of them are being done in the states.

It’s so hard when you look at Paul to believe he has something so horrible ravaging him from the inside. Ok he’s a bit thin but when he’s pottering around it’s difficult to believe he is sick. Despite the shit news we are resolute – we will find the drug that will kick this fucker into touch.
I’m still dreaming of that beach next year, Paul and I talked about it last night while we watched Cassidy sleeping. We seem to do a lot of talking over Cassidy as he snoozes these days. Kitty is building a sandcastle in a frilly polkadot swimming costume with matted salty hair and a sandy smile. Paul and Cass are collecting crabs and running shrieking in and out of the cold waves. I’ve been buried up to my chest by the kids and I’m watching everyone from under my warm, sand duvet with a contented grin on my face.

Apart from the cancer thing, we feel totally blessed and lucky because we have each other. On the days when I believe in fate and things I wonder if we met because we had to go through this together. We have always fit pretty well but this has cemented the symbiosis. We made a Kitty and a Cassidy and that is miraculous enough and then this came along. If it’s a test of some kind, we have passed it with flying colours. Sorry to get a bit schmaltzy again – feeling quite emotional as you might imagine. I don’t think I have ever thought about my place in the universe and my relationships with everyone as much as I do now…….

So onward and upward and will let you know what the docs say today

H and Pxx

Life is a rollercoaster.......

2009-08-17T15:32:00.000-07:00

Have you ever felt your heart drop into your boots? Have you ever wished the clumsy butterflies dancing in your tummy would flutter away? Have you ever felt the fear on a clear summer’s day when not even the sun can chase the darkness away? Well I have been feeling that horrible tickly dreaded sensation since Friday when Paul had one of ‘Those’ conversations with the doctor. They said that his blood samples appeared to show signs of Lymphocytes which could either be part of the infection left over or that the last round of chemo has had no effect on the Cancer. They then came back to confirm it was lymphocytes and proceeded to tell Paul that he was going to have to make some tough decisions about his treatment and that although there is probably one drug left to try, the best option might be palliative care which he could receive at home and basically means giving up treatment and waiting for the inevitable to happen! Tough bloody conversation indeed…….

I can’t tell you how devastated we felt and feel at the idea of just giving up. Although it has knocked the wind out of our sails we have emerged in fighting mode again. I’ve been doing lots of research into clinical trials; I’ll probably get back in touch with Prof Montgomery as although this isn’t his field he might have some advice. Also got the wonderful Natalie and Tamara and Paul’s sister Claire on the case and we are determined to explore every avenue, leave no stone unturned.

In the meantime the doc on duty over the weekend said that his white cell count was going down which doesn’t usually happen when the disease is on the uptake and that the markers (not sure what they are) looked different to when the Lymphoma was around before. If I’m confused then no doubt you are too. The reports are contradictory. What everyone is agreed upon though is that we will know nothing for sure till he has a PET scan (scheduled for tomorrow) and the results of a bone marrow sample (done today) come back. So fingers, toes and everything crossed that by some Stevenson miracle and despite evidence(ish) to the contrary, he has managed to kick this fucker back in touch!

So we’ll not give up hope and somehow I feel that we will be thrown a lifeline – how that manifests itself I don’t know but I have a feeling it will happen. I know you guys will give up hope either. So get chanting again for remission, remission, remission. Let’s prove the doctor’s wrong. And if any of you have a few spare minutes then get on the internet and look up ‘Peripheral T-Cell Lymphoma’ – more brains than just mine would be good in terms of finding useful information. Not on the disease itself but perhaps on drugs that are being used elsewhere or trials being performed – I may, after all, miss things in my nightly internet trawling.
And if we do have to ship him over to another country or pay for drugs we will defiantly need some fundraising ideas. You can either leave a comment at the nd of this or email me at: hannah_mackey@excite.com

Me and the kids hung out with Paul over the weekend in his room which was the best way to kick me and Paul out of any sullen ideas that our life together is doomed. It reminds us what we are fighting for and what we have to look forward to and makes me determined that there is no way I am bringing up those two little reprobates by myself! On Sunday the doctor came and did his round and the kids waited relatively patiently. Cassidy very politely said goodbye to him when he had finished and Kitty blew a massive raspberry at him! I’m not sure he was used to that sort or response to a serious clinical conversation. Ha Ha! If there’s anything that brings you down to earth it’s them.

Will let you know the results as soon as we have them

p.s Paul is frustrated that he keeps singing the Ronan Keating song “life is a rollercoaster……” whenever things are a bit bumpy. And being a mischievous mutha he wanted me to mention this in the hope of sharing the irritating affliction with you all. Believe me I have caught it already…….

p.p.s Has anyone noticed there seems to be a squirrel following this blog. Paul will be quite tickled by that.

home is where the heart is

2009-08-13T15:12:00.001-07:00

Things really haven’t moved on much from the last time I wrote. Paul’s a lot better but they are still pumping him full of antibiotics and waiting for his immune system to bounce back before they make any decisions on the next step. Which is a bit frustrating and annoying but I guess we have to ride it out. He looks a bit like an arctic explorer at the moment with a big beard and sunburn (his description not mine – I’m not trying to get him back for the black eye comment!).

I can’t remember a time through this whole experience when I have felt more frustrated about him not being at home with us. I suppose in the past it’s always felt necessary, him being in the hospital. We have either been searching for answers to an undiagnosed demon or fighting the one in front or our noses. And although he still has this underlying ‘thing’ going on, I’m not so frightened of him being at home and fighting it. As much as I used to dream and beg and plead in my mind for him to come back I was scared that the moment he did, something would happen that I couldn’t control – like he might unravel or come apart at the seams. I feared that that I couldn’t do as much here as the doctors in this battle. But his recent homecoming has made me realise that these stints at home are just as therapeutic as the treatment he gets in hospital. Ok, short of sticking him in the microwave, there’s not a lot of things we can do here to blast the Cancer physically, but just the sheer peace, rest and power of familial love has worked wonders in Paul.

Just hope that he gets a couple of days home soon x

Back on the 16th floor

2009-08-08T15:36:00.000-07:00

It feels like ages since I last wrote here but it’s not so long – the last few days have really been a bit of a blur.

Paul got progressively worse after Wednesday with the fever and nausea etc, by Thursday he was back on the oxygen, unable to move, too sick to talk much and by Friday morning they told us it was a chest infection and they were going to transfer him to the high dependency unit (part of ITU) in case he needed to be intrubated again. Apparently because of the fever his respiratory rate was really high and they were worried that this would be putting pressure on his heart. Cue panic, inverted hysteria, tears, involuntary sobs, glasses of wine and lots of wandering dark thoughts (me obviously!).

But by the time I got up there on Friday, although he was still running a fever he seemed a little more comfortable, I sat with him for most of Friday afternoon and by the time I left the ITU Registrar had decided he wasn’t sick enough to transfer but that they would review him later in the evening. Come today and he was requesting a latte, the guardian and a ham sandwich! Talk about freaking roller flipping coasters!!

He’s still being monitored but he seems to pulling out of the worst of it. I wonder if the infection was down to the fact that he went neutrapenic earlier than normal and he had a cough and cold recently, so maybe it just flared up again in full force. Well it’s all supposition – It could be something he just picked up somewhere or something he gave to himself. I suppose as long as he kicks it, it doesn’t matter where it came from. He was really floaty today which was quite funny, must be a combination of all the drugs and it was nice to see him grinning again.

I think they might put a truth serum in with all the other drugs he is taking because he told me yesterday that I had a really black bag under one of my eyes. “Charming” I said as the nurse snorted into her medical box. “I wonder what on earth could be keeping me awake at night”. “I thought it might be mascara” he said “I’m not wearing any makeup“, “ Oh it just looked like you had a bit of a black eye” – “ Yep you are definitely digging that hole a bit bigger Paul”….. By this point the nurse was openly guffawing…..

So things are stable at the moment. They couldn’t give the last few days of chemo as he was so poorly but I don’t think he missed much. We’ll find out next week what the plan is. I’m just desperate for him to come home again.

update

2009-08-05T14:37:00.001-07:00

Day 3 billion and 6 in the bastard cancer house……

If it feels like this long for me and you guys it must feel twice that for Paul. He has started the Chemo after a bit of touch and go with his cough. The Doc’s have been putting off him coming in as its against hospital policy to have anyone in with any bugs and stuff, which is understandable of course.

So he’s been back in the hotel on Tottenham Court Road till today when he was supposed to be coming home for a few days. But he’s been running a bit of a temperature so they have decided to admit him till it subsides. It means that he hasn’t received any chemo today but they hope to be back on track tomorrow. Meanwhile he is feeling utterly wretched, nauseous, tired and I guess pretty bloody fed up. But I also imagine he’s taking it all with the same good grace and stoicism as usual. I say I think because he has been too sick to talk much today so I’m second guessing his feelings. I feel qualified to do this by now.

This is a short one. The humid stillness is sapping my energy. Will write more when I have news and when I can type without breaking into a sweat……..

quick update

2009-07-29T14:04:00.000-07:00

Just thought I'd say that Paul won't be going in till Fri at the earliest as his cough is still hanging around annoyingly. But hopefully the chemo will start then........

Spirits are high in the Stevenson - Mackey household. The initial depression at such a kick in the guts has made way for, weirdly, a bit of normality. The Cancer may be back but there are still cardboard spaceships to be made and cakes to eat, rain to dodge and swings to push........

Full battle mode.

2009-07-26T15:34:00.000-07:00

I have been putting off writing this and my fingers are very heavy on the keyboard as I do so. Paul had a call last week from the transplant doctors and they said that the result of the PET scan has showed that the cancer is back. There are signs of activity in the nodes above his heart in the chest area. To say we felt like the air had been punched from our lungs, like the world has slipped on its axis is, well, not a very good description of how we felt, or rather, feel. It’s so shit!

The upshot is that they will have to give him more Chemo to try and get him back in remission again before they can do the transplant. So he goes in next Wednesday now for the chemo as an outpatient. He will be back in the hotel for a bit, then home and then back in the hotel while he is neutrapenic. They would probably have got him in last week if he hadn’t caught a cold and cough which is still rattling about a bit. He has been prescribed Tamiflu as a precaution and antibiotics, though he doesn’t have a temperature so hopefully it’s just a standard cold that he can shift by next week. On the positive side his lungs are looking much better apparently so they are back to considering the ‘Full Body Irradiation’ transplant as they think he is much better shape to withstand the treatment. But he needs to get back to a point of remission so please all chant for that.

It’s really highlighted the sheer, brutal aggressiveness of his cancer. It’s so disappointing, perhaps we have been too complacent, too happy, we have taken our eye off the fiend and it’s slipped back slyly. I know when he goes in next week he will have one of those conversations with the doctors that will not be light and optimistic but leaden and grave. At least we have had so many of these now that we know what to expect and can take them with a shovel of salt.

I need to get back into defiance mode. A couple of days ago I had one of those shivers of untainted positivity that can be so few and far between. I was hanging out the washing and Cass was on the computer with Paul playing 'Robot Rage' and Kitty was lounging on the chair with her thumb in her mouth and there, for a split second, was my parallel life, the one that was and will be again. I felt confident and sure that this is just a setback and that for the first time in a few days I wasn’t faking the optimism.

I’m taking a new stance though in my mental exorcising of the demon. I have often found myself screaming at the cancer in my head telling it to fuck off etc. But have decided that if I perhaps tell it politely but firmly that it has made it’s point, we are fully aware of it’s awesome power and ability to regenerate and are well aware that it could have the last word. But that it really has overstayed its welcome now and that the ‘big’ thing to do would be to back off and let us rebuild our lives. Well I'm willing to try anything.

Paul said yesterday that it’s hard not to feel guilty when the bad thoughts close in. I agree but I also think we need to feel those things so that we can move on from them. This time it will be harder to muster the energy as disappointment is an emotional leech. But it will happen, we have no option. Paul says this too – there is no option, no other ending and I believe him, I truly do, even if he finds it hard to believe it himself from time to time. It's back to full battle mode.

So chant, pray, wish cast spells - just do the business again people. Will keep you posted

chilli, mud and broken glass

2009-07-16T14:25:00.000-07:00

Radio on, glass of red wine, back doors wide open as the rain thrashes against the windows and lightening divides the sky. There’s nothing like a good storm to make you feel cosy and content in your nest. Especially when Paul is upstairs putting the kids to bed – well he hasn’t technically got cancer anymore so he can do some of the manual labour Tee hee!

He’s actually just come down and is about to make some more chilli concoction as I managed to smash the last jar yesterday. Hot chilli and broken glass on the floor as you children run around with frenzied cabin fever is not a good. I actually had to break the self imposed swine flu lock in yesterday as its just too hard being cooped up with kids. I have never been very good at staying so it has been torturous There are only so many things you can do with glue and paint and only so many times you can watch Harry Potter/The Little Mermaid and only so many ways to say “be nice to your brother, stop hitting your sister, please don’t put crayons in your ears” and only so many rooms to hide in…………..

To be honest we are more likely to get swine flu from Paul than the other way round as he has been going in and out of town all week for various appointments and tests at the hospital. He’s been to the dentist (they sort out his dental health to lower the risk of infections) had a lung function test, a kidney function test, MUGA scan (for the heart) and today he met the transplant doctor. They told him today that he wouldn’t be getting the full hardcore ‘Total Body Irradiation’ transplant as initially planned and instead he will be getting a ‘Reduced Intensity Mud Allograft’ . I know I know, it sounds like a treatment at ‘The Sanctuary’….The decision is that because of the past trauma to his lungs, giving him such invasive and aggressive treatment could well finish him off! They don’t mince their words. They weigh up the risks and it has been decided that although there is more risk of the cancer returning with the mud transplant the risk is greater that he would peg it with the other one. Ah the familiar rock and a hard place again, a place Paul and I are very familiar with now.

I was about to try and put in a nutshell-ish what this transplant will entail. But as I sit here I realise I am wading a little too deeply into unknown territory to be properly informative and might start making it up a teensy bit. So will get it straight and then write a technical post. He will be going for another PET scan tomorrow – I guess to asses whether he is still in remission. So fingers crossed everyone, though they can still do a transplant even if there is a small resurgence. Actually one of the doctor’s did say today that even if the cancer did come back after the transplant it wouldn’t be the end of the road and there would be other treatments which is reassuring, but lets hope we never have to cross that bridge…….

Paul has just given me a spoon of hell fire to taste. It is shitting hot as fuck! But has a nice little zip of star anise before it fades to a warm thrum on the lips and tongue. Hmmm the nest is suddenly cosier and just a little warmer…….

Normal minutes

2009-07-15T14:02:00.000-07:00

Hello all, just thought I should let you know that the bone marrow is still almost def going ahead on the 26th July. I know how that sounds quite flaky but everything has to be completely ok with the donor before it can all go ahead. So nothing is certain until pretty much the last minute.

I have such mixed feelings. I am trying not to count the days down. You know when you go on holiday and sometime around the beginning of the second week you get acutely aware of how many days you have left? Well thats kind of how I feel right now. I'm trying to live in the minute because these minutes have been so, well, normal I suppose. But its impossible not to be aware of every day ticking down to the transplant. But I'm also freaking a bit about swine flu in a way that didn't bother me last week. I know a couple of people that have it and it's been confirmed at Kitty's nursery and it's edging closer and closer to home. So in some ways I'm desperate for Paul to be cocooned on the 13th floor of UCH . But then I also know that the hospital is the worst place to be when there are infectious viruses flying around, but he will be in isolation to a degree so that has to be a bonus.....Arrgghh help - I have to say this is def not a good time to be immuno-supressed!

2009-07-12T14:51:00.000-07:00

Tears are streaming from my eyes, my head is throbbing, my tongue feels like it has swollen to ten times it’s usual size I have a tingling sensation above my cheeks and there are beads of sweat in places I had no idea there were even glands…….

No the cancer isn’t back and I don’t have swine flu. I have just tasted one of Paul’s new chilli concoctions. Forget the hummus, Paul is currently obsessed with making these amazing chilli sauces which are bloody lovely. Hot – freekin’ hot - but really bloody nice. He has been in the kitchen all night and is currently blitzing away a roasted garlic version. We already have a very faithful friends and family following, so I know that a few people will be excited to hear he has come up with a lime version as well………Fran and Sean; he has already put aside a jar for you both………

Anyway back to business. Time is edging closer to ‘body zero’. I write this because apparently when Paul has his transplant his current immune system will be wiped out and a new one put in so all the infections his body has memorised, like chicken pox and measles etc will no longer register. I really have to do more reading on this because it doesn’t seem right even as I am writing it. In fact most of the science behind stem cells and transplants makes me realise I am stuck in some 60’s science fiction fanzine as far as understanding the processes it takes to rebuild Paul. As far as I’m concerned the transplant is up there on a futuristic level with flying cars and living on the moon.

But with a little tutoring from Paul (and a big envelope of paperwork) I am managing to grasp the basics. Since I last wrote they have found another donor who is a 10 match (the best) so that means less risk of graft v host syndrome where the body rejects the donor tissue. So that’s bloody brilliant. It might put the transplant back by a week or so till they can sort everything out but that’s fine.

I do really need to fill you in properly on what is exactly in store for Paul. I think it will help me to see it in black and white. But I need to read this big envelope of paperwork in full before I can do that. I know it’s going to be pretty bloody shit for him. Any paragraph that is titled ‘Full Body Irradiation’ does not fill your mind with vision’s of kindly nurses administering tiny little injections from time to time.

Will write more tomorrow. Have decided to take kids out of school and playgroup as swine flu is getting too close to home. Therefore, will have more time on hands as we batten down the hatches for the next couple of weeks and will be able to write more frequently from the frontline.

A date.....

2009-07-02T14:53:00.000-07:00

A date has been set for Paul's transplant - 26th July! Am feeling a mixture or elation and terror. Elation because this could be our ticket to the future and terror because of the risks involved. Still, we have a few weeks to enjoy the summer and family life. Shit, I had better read up on what a transplant actually involves. Do marrow faries harvest the stem cells and magic the cancer away with their wands? Sounds plausible to me right now - better google it..........

H & P x

Stem cells, St Tropez and salami.

2009-06-29T14:13:00.000-07:00

Doesn’t the world shine when the sun does? I know it’s uncomfortable and sweaty and humid but Leytonstone feels like St Tropez to me at the moment. Well St Tropez without the sea and the glamour and the lovely restaurants and celebrities. Ok, it’s nothing like St Tropez but I suppose what I mean is, it feels elevated somehow. We have 'Horizon' café that sells erm…coffee and cake and sometimes I sit ‘paddling’ poolside with my ankles in the water sipping a ‘Hoegaarden’ which is pretty glamorous as far as my life goes. Oh I just love summer because, apart from the excuse to drink beer before tea time, the kids can run naked around the garden, making potions out of mud and slugs in pots, splashing in water and eating ice cream whenever it takes our fancy and we sometimes say “sod it” have tea in the park and eat any old crap and don’t get home till the sun has dipped below my roof top. All the rules go out of the window when the sun shines.

Someone asked me recently if I was going to give up writing the blog now that Paul is in remission and indeed I’m sure a few of you probably thought I have – it’s been so long since my last entry. But as you can see, no I haven’t given up. I think that would be rather pre-emptive on our behalves. Paul being in remission is only part of the journey. In some ways the really hard work begins now. He has to work to keep the bastard from the door.

So, what next? The doctors have said that without a bone marrow transplant in the near future the cancer will certainly come back, such is the aggression of the cretin. There are two types of transplant: 'autograft' and 'allograft'. The first uses stem cells harvested from Paul while he is in remission and given back to him. This is a less risky procedure but possibly less effective in the long term. An Allograph uses cells from a donor but there is a 25% chance of mortality from complications that can arise from either rejecting the bone marrow or from infections due to a prolonged neutrapenic stage (possibly three weeks of no immune system – not good). So ‘a rock and a hard place’ does not even cover it. The doctor’s believe that an 'allograft' is the best way forward and we agree that there is no point pissing around. It's risky but it gives him the best chance.

As far as a donor is concerned it has been proving difficult to find a match as he has an unusual tissue type, but in the last week it looks like they have found someone who is close enough. Apparently the match scale goes up to 10 (with 10 being the best) – they will not consider anyone under an 8 and the person they have found for Paul is a 9. So not the best, but not the worst and quite frankly we are grateful for that. So now its a case of tracking this person down and making sure they are fit enough for the procedure and if they still actually consent to it in the first place. So its early days but hopefully Paul will be back in some time at the end of July. I say that like I want that to happen but obviously there are mixed feelings attatched to this. I lose, I gain - hopefully. Absence makes my dreamboat grow stronger..........

In the mean time we are enjoying being a family and eating loads and doing normal things. Paul had to go in for a little top up of chemo last week, so he spent 5 nights in a hotel opposite the hospital as an outpatient! Apparently its cheaper to put them up there than in hospital. He got most of the chemo there and came home on sunday, just in time to roast a chicken. He will be neutrapenic this week, but at home, which is a little worrying – but lets face it he is more likely to catch something nasty in hospital anyway. I also had the pleasure of seeing him inject himself with chemo this evening which was actually quite fascinating – might ask if I can do it tomorrow night………

This has been long and its hot and its time to go and gaze at the evening sky. Just want you to remember that the fight is not over and we still need your positive thoughts. I’m terrified we might fade from view a bit. I think I have relied upon the knowledge that so many people have been chanting for Paul – like you are a collective comfort blanket or something.

So enjoy the sun and the waning of the solstice, make the most of the long summer evenings and think of Paul when you can. I remember some time back how some I imagined Paul stripped to the waist, sipping a beer and standing over the BBQ and I can happily report that this imaginary scene has become a reality…….on more than one occasion…….

H and P xxxxxxx

P.S I ate some salami, and some chorizo. The chorizo was nicer and I have bought a horseshoe of it, which i keep under my pillow and nibble from time to time. I can thoroughly recommend being a meat eater after 22 years of abstinence – it’s really exciting……..

FR

2009-06-12T15:35:00.000-07:00

Fuck Retirement, Fucking Rocking, Federal Reserve, Feral Ratbags , Fear and Retribution, Full Roast, Forget Reality, Frugal Rations, Fruity Raspberries FR, FR, FR what else could that stand for? Oh Yeah FULL FUCKING REMISSION!!

What can I say? We have had the best news today Paul is officially a cancer free zone!!!!. The boy, the dreamboat is sitting beside me as I type this and has been feeding me all the FR words. Shit what can I say we are a bit drunk and listening to old tracks and counting our lucky stars and going to bed.

The journey is not over but we can sleep sweetly for a while……..

Homecoming part 2

2009-06-08T13:57:00.000-07:00

Sorry it has been a week again and this will be a quick one as I want to get back on the sofa with Paul who has been at home since last Thursday! Yes I have been getting on with actually being with Paul rather than talking about him in virtual space. Basically his temp went down and they finally got a diagnosis on what was giving him the fever - which was C-Dif – one of the many super bugs you get in hospital. Luckily he didn’t get it seriously and was well enough on Thursday to come home where he has been ever since.

He was wiped out by the bug a bit and all his hard work at the gym and with physio seemed to have gone down the spout when he first came back. It’s amazing how a week on his back can wipe him out completely, actually I suppose it’s not that surprising at all stupid Hannah he’s got bloody Cancer. I think I see him as some kind of superhuman man, slaying bugs and such with gladiatorial panache. But I suppose even dreamboats come aground every now and then……By the way for anyone that is confused by this dreamboat term – in the early emails before the blog, when Paul was in ITU the first time, I referred to him as my Scottish dreamboat. ‘Bleurchh’ you balk, ‘Schmaltz’ you shout, too true, I retort. But in those days there wasn’t a dry eye in the house and besides a bit of gooey romance has its place sometimes.

Anyway a few days with the kids seems to be setting him back on the right track. I think family time is the best medicine for Paul. Yesterday he was roasting a chicken merrily in the kitchen, we got all our old vinyl out and danced about (mostly Kitty), drank a bit of wine (mostly me). He’s ordered a food processor from Ebay. This is, he says, the answer to all our problems. We shall, he, says be making vats of hummus and the like. Unless hummus can cure cancer and pay the mortgage (I suppose we could set a table up outside and sell it?) I fail to see how this can help. He is very excited and fired up- so I suppose actually, therein lies answer. Seeing things in black and white does help to clear the fog doesn’t it?

So tomorrow he has to go back in as an outpatient for a PET scan – the one that tells us how much active Lymphoma there is in him. Am I repeating myself? Anyway we get the results on Friday so please, please all chant for him to be at least still in a ‘good partial remission’. Obviously ‘full remission’ would be better. In fact please, please aim high with the chanting for a ‘full remission’. If it doesn’t show this he will have to start more chemo and his odds of beating this bastard Cancer will be even slimmer. But I know this won’t happen, it can’t happen because we need him here, full stop, end of. He’s doing far too well at answering Cassidy’s questions and loafing with Kit’s to go and bugger off again. And the chicken was really bloody tasty!

Meat glorious meat – what next is the question? Chicken satay and sirloin steak, crispy duck with pancakes, Parma ham or chorizo, salt -beef - bagels? Paul’s just making himself a black pudding sandwich – there’s still enough vegetarian inside me to find that revolting.

Anyway will let you know the results, must rush back to the sofa

Kisses H and P x

Cool.

2009-06-01T15:41:00.000-07:00

I thought I should report that Paul’s temperature has finally gone down. It’s the first time in six days that he has registered a normal temp and he feels marginally better overall today too. The fact that his neutrophils have finally started going up must be, in part, the reason why. I still find it incredible that the human body fights back with such instantaneous vigour. It’s game on again in the house of Stevenson- Mackey .

By tomorrow or the latest wed he should be back to safe levels and no longer neutropaenic. So depending on the results of his PET scan in about a week we will have a good idea if plan ‘ Paul convalesces with me and the kids at home and in the garden with some (hopefully) sunny weather’ will go ahead. Then we can action plan ‘ Hannah eats more meat’. Tee Hee!

More plans

2009-05-31T16:05:00.000-07:00

How glorious has this last few days of sunshine been? I can very reliably tell you that it has been three years since June began like this as, the last time I basked in such pure blue skies, I had just given birth to Kitty. Paul and I and Cass rolled around the garden for almost two weeks of unbroken heat and it hasn’t happened since because I rue it every year. But it looks like it may happen again.

I spent almost a whole day with Paul today which really doesn’t happen very often. We didn’t do much just read papers, drank coffee, yawned and chatted sporadically when we had something interesting to say, Paul dozed on and off and nurses and doctors came and went. With the exeption of the medical interruptions and of course the setting, it was almost like an ordinary Sunday……..

He’s had a temperature for about four days now and he’s feeling very feverish and lethargic. He’s being given antibiotics and they are keeping a very close eye on him. They think he has some kind of infection which is apparently quite normal because of his challenged immunity. It’s just a mystery as to what kind of infection. We are just really hopeful that it doesn’t get any worse as it will scupper the plan. The plan, the plan, the plan – it’s daft to have one in a way when the illness you have is so unpredictable but at every stage in Paul’s fight from ITU to Haematology to ITU to back upstairs again the doctors always talk about ‘The Plan’. In ITU the plan can change by the hour because his condition has been critical, in haematology it changes by day and by week and is dictated by his response to the chemo and the outcome of various scans etc. Up to a few days ago the plan was to get through this round of chemo then if the next scan shows, at the very least a partial remission, then he could come home while they find a donor for a bone marrow transplant. That would mean maybe a month or so at home while he gets fit and strong enough to have a transplant. He also needs to put on weight and he has to pass a lung function test for this to happen. So we are just hoping that, whatever this infection is, it doesn’t interfere with the plan.

Plans, plans, plans. There’s the get better and come home plan and there’s Paul’s plans for the garden. I have to go to the garden centre tomorrow because he wants me to extend the herbs and is dismayed I have not done anything about tomatoes this year. The there is my ‘Around the world in eighty bites’ plan or as Paul has put it ‘Around the farmyard in eighty bites’! I felt there was a bit of an anticlimax after the lamb episode in that the experiment was over almost as soon as it had begun. So while I was making some bacon for Cassidy last week to have with his pancakes and maple syrup I realised there are so many things that I have never tried as I turned Veggie so young. There are so many things that Paul has put on his plate that have made me wonder what they taste like. I guess it seems to me right now that life should be about tasting and living and experiencing. If I were told that I were dying tomorrow I would not regret the things I have done but the things I haven’t so I have decided to try at least, all those things I have wondered about. And yes I did try the bacon and maple syrup and it was pretty damn good.

I’m making a list – it’s inventively called ‘The meat list’ it has all the things I have never tasted – I will post it and maybe you can come up with things I should add – as long as there’s no offal – I’m definitely not ready for that

Anyway have to go get ready for school tomorrow. Feel a bit sad about Cass having to go back as he has had such fun over the last half term, with late nights most nights, running feral in Victoria Park till way past his bedtime with Kits and Scarlett and mud under his nails, coming home with the smell of coal and fire in his hair after dancing to Drum and Bass at a BBQ, birthday parties, too many sweets and defiantly not enough fruit, mini beast hunting, visiting Daddy with no time constraints– no wonder kids hate school……

Rain and coffee

2009-05-28T16:12:00.000-07:00

SO I am SO over this bastard cancer thing now. That is it – I have had enough, it’s been hanging around like a hormonal groupie at a ‘Boyzone’ gig for long enough! FUUUUUCK OOOOFFFFF now . I know we have been all chanting but can we all just give it the massivest middle finger possible on the count of three:1.2.3. Fingeerrrrrrrr!!!!

Grrrrrr sorry I felt like the world had begun anew when the sun shone last Sunday in a blaze of tropical glory. Then the stupid rain starts and it reminds me that I have had enough! Yesterday was just one of those days, you know the ones that make you reach for the bottle earlier than you might do ordinarily……

I went to a cashpoint on Oxford Street to draw out some money and as I walked into the Disney store to buy some hideous plastic crap for Kitty I realised I had walked off without taking the money from the machine. Gutted, yet still laden with plastic crap, I jumped on a bus from Oxford street to see Paul and only realised when I was at the British Museum that I had got on the wrong bus, then only realised when I had jumped off the bus in a panic, that I was actually on the right bus but had jumped off too early. So I did a couple of left and rights and then realised I was lost. I got lost in London – I’m Londoner for Christ sakes, I’m lost in London and I had to ask a German how to get back to Tottenham Court Road. The shame of it. In fact my shame must have caused the Gods go cry because the heavens opened and I was rained upon mercilessly. So I shuffled through streets I haven’t been down for years, ballet pumps filled with rain water, plastic crap burning a ring of pain on my wrists and I still had to pick up some stuff for Paul. So I got the coffees (One for me and Paul) and stopped at another cash point to replenish the lost stock when a gust of wind caught the bag of plastic crap like a yacht sail and knocked the coffees over………

Cross and slipping on coffee I made it up to see Paul and had the audacity to break down in tears over my shit day. Yes you got Cancer but here I am wet and covered in coffee and really pissed off so hear me cry…….

There were three things that redressed the balance after I spilt my coffee. The first was a women emptied her shopping bag and gave it to me so I could carry the (almost empty) cups to Paul. The second was a man ran after me with the bag of plastic crap after I had left it at the cash point in a hideous tizzy. And the third was that Paul shared his coffee with me. He poured one from the other until they measured the same and laughed at my tears and rubbed my shoulders and by the time I left my shoes were dry.

The fact that Paul is making the world alright for me and I can have a breakdown over everything and nothing is a big indicator that things are back on track to a degree. There are no ways I can describe how that man has patched me up and put plasters in the right places and fixed the ills and the spills, zipped the rips and mended the tears. It’s probably been the biggest test for me personally to be the smiley stepford wife so to be looked after again is priceless.

He is neutropenic again and about half way through this round of chemo . He has been feeling ok but today he took a bit of a chill and had been feeling a bit feverish. They are so amazing because the moment he feels under par there is a flurry of activity with x-rays and blood tests and constant observation but I’m sure he’s fine. I think it’s to be expected that he gets the odd infection when his immune system is compromised in this way. I will add more tomorrow on the physical stuff and stop droning on about coffee and rain and such…

Too to write any more night night x

Oh and by the way............

2009-05-18T14:36:00.000-07:00

You get nothing for two weeks and then I bombard you with entries. I’m like the blogging equivalent of a number 19 bus. This is just a quickie to say I forgot to mention something last night – probably due to the fact that I was on planet love and my mind was fuzzy – oh alright it was also party due to having more than my fair share of red wine too.

Anyway, yesterday I officially became a ‘Lambetarian’. Paul roasted, I feasted and it was goooood. I only had a little as I thought my body might go into shock but it didn’t. I didn’t wake up this morning with chronic stomach ache, nor did I wake with a healthy glow as though the iron had surged to long forgotten territory. I didn’t mourn the past 22 years of abstinence and neither does this feel like a new lifestyle choice. I may or may not eat more – I think I’ll leave that to a random flesh eating urge. But I also think life is way to short to say never, never, never………..

And Paul was pleased x

love and stuff

2009-05-17T15:27:00.000-07:00

What a wretched hole is left when a dreamboat sails away…….I have had a house full of Scotsman and laughter and suddenly things are quiet again. Annoyingly, the very act of him coming home for the weekend has just highlighted all the things I miss so fucking terribly. ……

The deep reverberation of his voice that you can hear from any part of the house, the way he blows his nose like a foghorn, the pants and socks and sundries strewn across the floor, the magic cup of tea that appears on the bedside table, the wine glass that mysteriously fills itself, the pure happiness in my children’s faces.

There are some things that are unquantifiable in a relationship, you know, the stuff about why you love one person and not the next. Why does your heart and body and mind feast on one and not the other? How come you can feel air, the atmosphere change when that person walks in a room? How do you explain the gravitational pull of two people in love? The (sometimes irrational) need to be with that person and that person only? I don’t know, I don’t know. But what I do know is that by taking this away from me I am more desperately in love than ever. I have always been besotted with Paul but now I am bordering psychotic!

I guess the cancer bastard has its uses in that it makes you appreciate what is front of your face. Anyway……Paul is off back to UCH for another round of chemo that will start tomorrow or Tues. It’s a 21 day cycle again so if all goes well he might be able to come home for a week or so again…..

Will keep you posted xxxxx

Visitations

2009-05-16T14:50:00.000-07:00

Forgive me blogfather for I have sinned – it has been over a week since my last blogession. This is due to two overriding factors. The first is that during a DIY I decided to unplug the computer which was dead easy – it’s the putting back that was bloody impossible. I’m so cross with myself for being such a pathetic girl and getting into such a state with all the wires and plugs with all their different little faces and pins and pluggy bits and tiny screws. So my ineptness has meant no internet access for a while – therefore no blog entries.

The second reason for my delayed entry and why I am able to post this for you now, is that I have had a VIP staying with me for the last few days that has been occupying my time somewhat. My Scottish dreamboat came home on Thursday afternoon and is still here!! Yes you read right, be you drunk or tired or just habitually confused the last sentence was a truth – and a beautiful one at that.

Basically there was a moment between the last round of chemo and the next one that will start next week where it was decided he was able to come home for a few days. And so here he is and as I don’t want to waste any of those minutes I will sign off and get back to him. He’s currently lounging on the sofa and I am about to curl up with him. I will fill you in properly but I just wanted to justify my absence and also let you know the amazing news.

Big love – a very contented – H and P xxxxxxxxxx

Even keels

2009-05-04T15:43:00.000-07:00

I hope everyone enjoyed the first bank holiday of the year, got a moment to relax and perhaps snooze for a bit in the sunshine, drink some wine, catch up and wind down….I know I did. God it feels good to bunk off school doesn’t it? That feeling never leaves – the one that sent Cassidy into a frenzy when he realised he didn’t have to go to school today, the one that releases Sunday from a day of dread and Monday from drudgery……..

So things are ticking along on a relatively even keel with Paul. He still hasn’t suffered the terrible nausea he did the first time and he has been given the second part of the Codox (the M bit). It’s given him a sore mouth and water retention so he’s not sleeping brilliantly but nothing he can’t cope with. Though, I am beginning to think that there is little that Mr Stevenson can’t deal with. He’s neutropenic again so I haven’t been in to see him for a few days and probably won’t for at least a week, but we are getting used to the prolonged absences. We’ve set up skype and have got a web cam so hopefully that will provide some sort of replacement to actual physical contact. Being a pen and paper girl it makes me feel all a bit Sci-Fi We are the future!

The plan with Paul’s medication is still the same. If he responds in the way they hope and the way he seems to be to this round then he will get one more blast of chemo then possibly a bone marrow (or stem cell) transplant. Both sisters were tested and neither were a match but it was a one in four chance anyway so pretty slim. If he is in a total remission by around this time next month then can actually grow and plant his own cells back in (this is where it all gets really, really Sci- Fi) because they would be considered healthy enough! If he is in partial remission then they will look for a best match donor. I tell you what I will def be registering myself on one of those list in the near future – it’s sad that it takes something so serious to make you get off your arse and do something so simple but……..

Now you might be all pleased, revolted and also, I hope, a little proud to hear that I have thus far slaughtered 6 mice! Some by sticky pads, some by traps and one with strangulation by my bare hands, well fingers (their necks are so small!) ok so that last bit was in my imagination. How could a vegetarian be so cruel? Easily when mice start shitting in her child’s buggy! Anyway my efforts have seriously depleted the mousley activity but I am still on high alert and will be trying white chocolate tonight. Paul is very; very proud of my efforts so even if I did feel bad (which I don’t) knowing that I am keeping the house vermin free is very rewarding.

This might sound pre-emptive or overly optimistic (is there such a thing?) but over the last couple of weeks or so Paul has seemed so much better than I have seen him since…well I think since before he was in Whipps X in November. It’s ironic that visually he looks sicker than he has ever done, in that classic cancer patient way, no hair, pale pallor etc etc. But he just seems better. It’s almost imperceptible and of course could be all in my head and I do have to remember not to ride the rollercoaster but I love having a snippet of things to come.

Hand P xxxxxx

Plague and pestilence.....

2009-04-25T16:16:00.000-07:00

I have spent some lovely, long afternoons this week with Paul and the kids. Kitty seems to have broken through the ‘no eyebrow’ alarm barrier and I think, has got more used to daddy looking a bit different. She has been lounging on his lap watching cbeebies and eating crisps and today she stroked his head asked about his hair. Cassidy seems not to care at all about Paul’s physical difference and he sat with Paul today and they constructed a toy he bought at boot fair this morning and things seemed as ordinary as they can be. God, what a difference being in UCH makes to the whole experience. I just can’t imagine having the ability to have almost normal family moments like this if he was still in Whipps X.

As predicted by the Docs he has not felt as sick as the last time – in fact the moments of nausea are fleeting so far. He will be neutropenic again by around next wed so I will have to cram a few visits in before then. His mood is good and the positive news has given him the boost we hoped for.

So on top of everything like; he is good at answering questions, making roast potatoes, making me laugh, mowing the lawn, doing the lottery, pushing swings, there is another reason he HAS to come home: I’m not very good at pest control. We have mice, moths and the bloody ants are taking over. They have discovered the kitchen and are turning up in random places like out of my purse in supermarkets because they have obviously been hiding in my handbag eating crumbs. It’s not a good look at the checkout I can assure you. I have even taken a couple in to visit Paul too, much to his amusement/alarm/incredulity.

The moths always turn up at this time of year – they seem to peak at the same time the first lavender starts to flower. I have always thought there has to be a link to this and the fact that Lavender is supposedly a moth deterrent, but I am going off on a tangent. Paul has always been the driving force behind the annihilation of all pests he would deal with mice with no mercy - killing them with one flick of a newspaper ‘karate kid’ style, poisoning ants before they took up residence and spatting moths with gusto. And while I have even killed a couple of mice myself I am not keeping on top of the whole exterminator thing - I know this because, as I type, I have seen two mice brazenly scamper across the floor.

Do you think there is significance in the fact that a cat has been sitting outside my conservatory door for three nights in a row just staring in? Do you think it can sense the mice within? Can it see mice that I cannot with its extra sensitive cat eyes and is happily sitting outside my window watching cat TV? Or is his presence just a cat way of trying to befriend me and make me give it food? Whatever the reason it’s a bit disconcerting.

So has anyone got any tips on pest control?.........

GPM

2009-04-21T14:52:00.000-07:00

Just a short one tonight to let you know that we got the results of the scan through tonight and they show a ‘good partial remission’. In other words it looks like the chemo is doing its job inside and out. Apparently his glands have reduced to between 50 and 75% which is utterly brilliant!

It’s very hard to not want to punch the air in joy but I’m torn between utter elation and the need to keep a rational head on my shoulders. It looks good, but we have been in this position before and it’s snuck back in the back door, so I do have to keep some sort of perspective. “Don’t ride the rollercoaster, don’t ride the rollercoaster, don’t ride the rollercoaster…..”

He starts the heavy chemo again tomorrow – the one that made him feel like a sick bucket last time, but they said s he has less disease to fight now it might make it a bit easier.

Anyway watch this space and keep up the chanting – Paul is really convinced it’s helping that you are all thinking about him and egging him on and I do too xxxx

Plans and scans.

2009-04-20T15:04:00.000-07:00

Again another week has passed since I last wrote. Sometimes the time seems to pass in a blink and at others it oozes like treacle. Sometimes the 'Whipps Cross' days feel like another lifetime ago and other times they are yesterday or the day before. Sometimes I can barely remember a day when Paul wasn’t sick, it’s been so all consuming and other times I have to remind myself that he’s in the hospital with cancer and not just popped to the shops or at work. Time and memories and emotions and experience are all a little jumbled at the moment. I need a giant iron to straighten them all out……….

On the subject of time we have been told that if all goes to plan and Paul responds to the IVAX and the regime they have masterminded, then it will be at least 3 months till he can come home. It’s sort of helpful to have a time frame but it’s tough for him to be told he’ll be in there for at least that long. So far it seems that clinically he has responded to the current treatment. Nodes are down, lungs are getting better, rash has depleted but they will give him a PET scan tomorrow to get an idea of what is actually going on inside. This will apparently show if there is any active lymphoma in him and how the glands are inside his organs such as the spleen and liver and whether they have reduced in the same way as the ones in his neck and groin etc.

So if the results show there is a full or partial response then they will fire in with more Chemo tomorrow or Wed. The proposed regime is more Codox M, then more Ivax and then a bone marrow transplant. They have taken blood samples from both sisters and if they are a match then that’s great and if not, they will refer to a list of donors. In the unlikely event that the scan shows there has been no response then they will change the drugs and try something else. So fingers crossed for tomorrow.

Paul is not looking forward to the Codox M as it was the drug that made him feel so rotten last time but I think the advantage is that he knows what to expect this time round. If it looks like he can’t stomach any food he’ll ask for an NG tube to be put in sooner rather than later and he wants to review how his anti-sickness drugs are administered. He’s so amazing in that he doesn’t just sit back and accept everything that is thrown at him without questioning it first, or at least being informed as to why things are done in a certain way and is very direct about how he wants things managed – which is brilliant.

Some wonderful news is that that we have been able to go in and see him. I went last Thursday for the first time in a week and the kids went in on Saturday and also today. It’s been so nice just to hang out together, watching a bit of telly, munching on snacks and lolling around on his sofa (and in my case snoozing on his bed on Saturday I was so hung-over – thanks Wend!). Kit’s still peers at him quizzically from time to time as if she can’t work out what’s different (it’s lack of eyebrows Kitty!) and Cass is obsessed with all the equipment and the oxygen tanks and totally thrilled that he is on the 16th floor. It’s nice just being a foursome again and for Paul to cuddle and kiss them and answer the incessant questions and sometimes tick them off for being naughty – you know all the normal stuff. And today he came out with us when we left with his portable oxygen tank and went down to the hospital shop! Which feels like such an achievement. In fact I think tomorrow we might even be able to sit in the canteen and get a coffee together yippee! Small things are so utterly appreciated right now.

So let’s just hope that this scan shows that he has responded and we can get on with the regime and then the plan that he is convalescing at home over the summer can go ahead. I smelt the first BBQ being sparked on Sunday and it made me think of Paul, beer in hand, spinning prawns and sausages to charcoaled perfection. The grass is so long now in the garden now its like ‘Honey I Shrank the Kids’ when the kids go out there. They are battling against 50 foot blades of grass and dandelions the size of skyscrapers - it’s just one of the jobs I’m saving for him when he gets home. Tee hee.

Will keep you all posted about the results

Big Love H and P x

Happy easter

2009-04-13T16:49:00.000-07:00

I hope everyone has had a satisfactory Easter wit lots of chocolate. I have to admit my dining room table is groaning with a ton of the brown stuff – there’s so much I can safely nibble away in the knowledge that the kids will not notice me snaffling away at it. Actually in some crazy attempt to freak me out, Cass and Kits have hardly touched any chocolate at all. It’s quite odd, It’s like there is so much of it hanging around they can’t see it anymore, it’s like wallpaper. It makes me wonder if shouldn’t just liberally sprinkle sweets and chocolate around the house on a regular basis. But I know if I did it would backfire like most of those reverse psychology tricks you try and pull on your kids……

It’s been hard not seeing my boy for the Easter. It’s the first bank holiday of the year and we usually throw ourselves into it with enthusiasm by consuming too much food and wine etc. So I have I’ve been keeping myself occupied by doing DIY and sorting out Cassidy and Kitty’s room ready for them, to move in to. Currently we are living like squirrels in one nest; all piled into my room so I’m working to extracting the little uns ready for when Paul comes home. I have to admit though that it’s been really comforting having them nearby and listening to them sighing and snoring and sniffling in to night. But a lot of things that used to keep me awake now soothe me to sleep and vice versa…..

I saw Paul in the flesh last Thursday for the last time before he went neutropenic Since then I have done a few food and pyjama drops and scuttled past his room. It’s been so hard not to peep in but I think that would make it worse somehow. Hopefully he should be building up his cell count by the end of this week so I can finally see him. He’s doing really well, well really well in a chemo patient kind of way. He’s not horribly sick or anything and he’s building up his physical stamina slowly. It’s amazing how a couple of weeks in ITU has diminished his ability to get around in a way that we all take for granted. Sometimes I call him and he’s hard at work on the exercise bike or has had a walk up and down the ward. It sounds small but these are such big steps for Paul.

I think he officially looks like a cancer patient now because his eyebrows have finally dropped off much to Cassidy’s delight! He’s been asking for photos…....And of course he is still, if not more, in full steam ahead mode. He was seen by a palliative doctor the other day (I guess an unofficial councillor or something) and they seemed pleased with his general out look and said he seemed to be coping well and Paul said “I’m not coping – coping means accepting the status quo – I’m fighting” and it made me think about how I use certain words to describe my state of mind. It’s true – when I think about it – coping means treading water and as Wendy said, it’s a passive word and not at all representative of our situation. So for the first time I can say with pride and at the top of my voice “I am NOT coping!!!”….

So we are still in that stage where no news is good news really. Just waiting to see if this round of chemo does what it’s supposed to do. I guess we will know in the next week or so. Cass and I have been doing our chants every night without fail. He has a very regimented and systematic routine of lymphocyte busting which we go through at bedtime, which includes: Fire balls, anti toxic spray, bombs, dough-balls, distracters, giant balls and then a lot of kisses. They all have their own little hand actions to go with them too.

So keep chanting people even if the chocolate has made you sluggish. And remember the next time someone tells you you are not coping – smile and feel proud!......

Kisses H and P xxxxxxx

Spring Chemo

2009-04-06T16:27:00.000-07:00

Today dawned bright and sunny with the whisper of summer around the corner. Paul’s been asking about our herb garden we planted last year and everything is bursting forth. Big sprigs of giant parsley, spicy cress leaves and baby mint, the bay tree has reached gigantic proportions and the chives are incubating their purple flowers. I looked out of Cassidy’s bedroom window this morning and imagined seeing Paul, stripped to the waist, digging up potatoes or mowing the lawn or scrubbing the barbeque ready for a feast, sipping on a beer and playing football with Cass. As the garden starts to become a place we can play in again, it reminds me of how much I miss him and also of how much we have to look forward to. I lay in his hospital bed with him yesterday and we talked about all manner of things as if we were on the sofa at home. He has big plans for the shed in his convalescence – he wants to pull it down and put up a greenhouse and small potting shed in it’s place. I love the fact he is setting plans for the summer and I would not put it past Paul to be ready and fit for pushing a mower by then – such is his incredible stamina and self healing power.

He started the new chemo last Thurs evening, It’s called IVAX I think. We won’t know much in terms of it’s effects for a week or so but so far he doesn’t feel too rotten. He was worried that this was a sign it wasn’t working (no pain no gain or something) but he has been reassured that his lack of nausea doesn’t mean it ineffective. He’s been moved to a great room with a south facing view – you know the kind that makes you love London so much. It’s got the Houses of Parliament, the ‘Gherkin’, the ‘Wheel’, St Paul’s etc It’s quite big as well ad has a little sofa so it’s quite comfortable.

The consultant was in last Fri and he was more positive than he has been. Paul thinks they feed a bit off his own positive attitude and the most solemn Doc has lightened up considerably. Why he couldn’t have been more cheery from the start I don’t know, but I suppose they like to keep you on your toes…….Anyway they said that even if this Chemo doesn’t work there are other options. Paul asked about trials of new drugs which they said they would look into and they will be taking blood from both sisters in case they need to do a bone marrow transplant. But it’s very much – see how this round goes and make the decisions then.

He’ll be neutropenic from tomorrow so I’m going to do a PJ and food drop, then I won’t go in till his White Cell count is up again, which could take up to 2 weeks. It’s going to be very tough not seeing him for such a long time, but it’s for the best as it’s not worth the risk of giving him an infection just for a sneaky peek. There will be plenty of time for kissin’ and stuff when he gets better…….

It was an up and down week last week and I hope this one brings more stability emotion wise. I even broke my gambling fast and bought a scratch card in an act of almost pointless defiance. I actually won something for the first time - £6.00! I was pleased till I noticed that my win entailed finding a 6 and a 6 and a 6 and then I just freaked out about the devil nature of the money. Then I thought it must be a sign that I should really not be doing scratch cards at all and decided to give the card to the down and out that I usually see outside Leytonstone tube but he wasn’t there and there were no other beggars to choose from so I’m still walking around with jinxed money in my back pocket. What should I do with it? I thought about cashing it in and donating it to Macmillan but then I thought it might jinx the whole charity….help what should I do? I am honestly not normally this superstitious…….

Yawn – I’m up late again – but it’s the Easter hols so I have no uniforms to iron or packed lunches to make and you can officially give your kids cake for breakfast during holidays so all is good……..

Night, night

P.S Aren't lambs born in spring?.........Do you think I want to, quite literally, consume the very essence of rebirth or something? I think my lamb consumption obssession has many levels - any one want to drink a bottle of red wine with me and discuss?

Odds are for bods

2009-04-02T16:26:00.000-07:00

It’s been a strange week, an up and down week, a week where I have aged literally, spiritually and metaphysically. .........

Paul had one of those visits from the doctors where they do a bit of solemn faced straight talking. They basically said the fact his lymph nodes were up again was a bad sign and might mean that the Codox hasn’t worked or that the Lymphoma is more aggressive that they thought. Either way his prognosis is worse because of this. To throw into the mix is the fact that his lungs are pretty tattered and torn so, administering the Chemo with the likelihood that he will get some sort of infection because of his lowered immunity, is a massive risk. So basically the cure could be the killer. Talk about a rock and a hard place. Paul said it was like a funeral procession when the docs filed in. I realise that it’s the first time for Paul where he has had the experience of being given that kind of news. Each time I have been told to expect the worst, or that there is no way Paul will make it out of ITU, he has been sedated so he hasn’t had to actually hear the words. So that knocked him for six for a bit.

But you know what? It took him all of about 8 hours to get over the shock and send me a feisty text telling me the cancer can go fuck itself! I was busy self medicating with red wine and Jack Daniels when I got the message from Paul that we were back in business and that was the best birthday present I could have asked for.

And yesterday we had a big cry and then a big sigh and then a giggle and a cuddle and decided that – prognosis? Shmognosis….. this changes nothing at all as far as me and Paul are concerned. The plan is still the same – Paul gets better – we live happily ever after and at some point manage to get to the beach. Paul said that odds only matter if, when it comes to crunch, you fall on the wrong side of them and he is so right. How many stories have you heard where people are given a month to live and 20 years later they are happy smoking fags and sipping margheritas in Costa fucking Rica?

A wonderful Professor ( Montgomery that gave us the second opinion when Paul was in Whipps) once said to me “We are not prophets we are doctors” and he said this in response to someone telling me categorically that Paul would not pull through. That was 5 months agao and those words have stuck with me. They would not be treating him if there was no hope and without hope we may as well give up – and that IS NOT going to happen. OH I WOULD WRITE ALL OF THIS IN UPPER CASE JUST TO GET MY POINT ACROSS IF IT WASN’T SO ANNOYING!

So Paul would like you all to focus on him not just beating the cancer but on not getting an infection when he is neutropenic (this is when he has no white blood cells and no immune system). So we have to chant about that specifically please. He has started the Chemo tonight so it’s game on – restart the positive vibes in full force. Sometimes it’s good to get a big kick up the arse like this because it’s a call to action. Chant, pray, hum, jog, smile, laugh, drink, toast, dance, skip, sing, sleep, sweep, play, type, eat. Whatever you are doing for the next month or so, sneak a thought and a chant for Paul in there, even when you are on the loo - ‘Poo for Paul’ – that’s a slogan. Oh Dear I think many of you will no longer be able to go to the toilet with out thinking of Paul. Tee Hee! Not sure if that’s a good thing or a bad thing….

Anyway keep the faith people – me and Paul most certainly are.

xxxxxxxxx

P.S. He’s eaten the mustard seeds so we have the Dalai Lama on side.

P.P.S. Have not eaten any lamb yet but have licked a spoon when making a shepherd’s pie for Cass – does that count?

P.P. P.S. Cass won a prize for making an Easter bonnet in a parade this afternoon – was very proud and so was Paul.

Life, love, lamb........

2009-03-30T15:51:00.000-07:00

Blimey it’s been a week since I’ve written anything – that’s very remiss of me. Well things seem to be galloping along at a fast pace. Paul has a habit of doing this ‘recovery at a miraculous rate’ thing. One minute it seems that we are stuck in a cycle of slowly bit surely, then all of a sudden he’s sitting drinking soup and generally kicking ass!

He moved out of ITU for the first time tonight and is now on the 16th floor hurrah! That’s such a massive step physically and mentally. He’s still weak and thin and all the things you might expect from someone who has been through Chemo and on a ventilator for the last two weeks but his spirit is strong. Up till now it’s been more of a silent, determined fight, ‘focus, focus, focus’ which is still the case except, he’s just more vocal now. That’s probably also down to the tracheostomy being taken out – stupid Hannah! I guess what I’m trying to express is that I feel more involved with the fight now because we can communicate whereas before it’s Paul in a solitary battle. And it feels good to be involved, even if it’s in little ways; foot rubs, bringing the paper, waffling on about domestic dreariness and familial things. Right now all the little things that are taken for granted are like precious metal.

And he’s been doing an amazing job of fixing himself up. It’s awesome because sometimes he knows more about his body and how he needs to be treated, than the doc’s do. He had got to the point on the ventilator where it seemed it was working against rather than for him so he just took the executive decision to move on and the doctors agreed. And that seems to be the propulsion in terms of progression that has got him to be where he is today.

In terms of the Chemo we did think that he would start the end of the week but I have just heard from the front line that he will be starting the next round tomorrow as the nodes are starting to flare up again very slightly so time to knock them on the head again. Paul’s motto is ‘full steam ahead’ and although he isn’t looking forward to the nastiness of the medication he just wants to steamroller the cancer before it gets a chance to fuck him up again. A very healthy attitude I would say.

Moving on to my own unhealthy attitude to pointless gambling - I have kicked the scratch card obsession – mainly because Paul gave me one of those looks when I told him that said ’ foolish’ in big neon letters. But subsequently I have cultivated a new one that has been growing for a few weeks now and is more palatable to Paul scratchcards. I am obsessed with the idea of eating lamb! For those of you that don't know I have been a vegetarian for the last 22 years but I am suddenly quite struck with the idea of consuming a beautifullyl roasted, tender and moist baby sheep (that’s what the are aren’t they?). I’m not in the least bit interested in bacon sandwiches or sirloin, chicken breasts or t-bone – I want LAMB – or at least I think I do. My lovely friend Fran and I have discussed this and we think it might be that I associate roast lamb with Paul and the whole homely Sunday lunch, family togetherness sort of thing so it’s more that, than a hankering after actual flesh, but I’m not sure…….I told Paul that if he gets better then I’m going to become a Lambetarian which he quite liked – will let you know if I live up to the title……….

So there we have it; life, love and lamb or; love life and love lamb or; lambs love life - whatever your fancy I know that Paul loves both life and lamb so that's good enough or me. Oh dear I'm losing it - but then I'm a minute from turning 36 so I think that's allowed

H and P xxxxxxxxx

slowly but surely

2009-03-23T15:11:00.000-07:00

It’s been a good few days. Paul is steadily making progress and the Doctors are really pleased with the way he is fighting back. I think they are genuinely amazed that one minute he is critical and the next he is sitting up in a chair. Of course I have seen it all before!.....

The plan is still to rest him at night but push him a little in the day by reducing the pressure support from the ventilator to exercise his lungs more. He is also able to speak occasionally when they deflate the cuff in his tracheostomy – not entirely sure what a cuff actually is but when it’s up (filled with air) he can’t talk and when they it’s down he can. The Doc was tickled to hear he had a Scottish accent and it’s lovely to hear him talk again. The Chemo docs are also really pleased with his progress. His White Cell count is back up to normal again and his glands are still down and the Lymphoma rash that covered his body is much better. They said they could start the second cycle of Codox –M as soon as he is off the ventilator but that there was no rush. It’s always such a relief when doctors stop talking urgencies and are more relaxed in their terminology. Here are a few ways to tell a Doctor has stopped considering the mortality of your loved one as a distinct possibility:

They stop saying if and start saying when.

The look of serious gravity on their faces is replaced with occasional gaiety (In fact some Doctor’s don’t even look like the same person when they are in Good Doc mode).

They progress from no physical contact whatsoever (when your loved one is seriously ill), to laying a hand gently on your shoulder or arm (when your loved one looks like they might make a recovery) to patting you on the back in a jolly manner (when your loved one is sitting up reading the Guardian).

They actually smile.

We have seen a lot of smiles on faces of late so that really can’t be bad can it?

As far as how he is in himself – which I have been asked again by a few people - it’s complicated. He’s obviously pleased with his progress but it’s hard to get excited about anything when you are that knackered and poorly. I can really understand his tunnel vision and complete focus on getting better – I’m not sure I would have the same level of mental discipline and it truly is awe inspiring. I have said to him I have no idea how hard this must be for him. I can try to imagine but I’m sure it doesn’t come close. I have bleated on for years about how tough labour is but even childbirth seems like a broken nail compared to what he’s going through. But his mood has definitely lightened over the last few days. He’s got his i-pod and he’s got the radio so he can listen to the footie. He slept very well last night for the first time since – well since I can remember and he’s looking forward to the possibility of getting out of ITU in a week or so and back up to the 13th floor.

He also might be able to see the kids soon which will be amazing. I took a picture of Paul for them on my phone and Cass was quite intrigued by the lack of hair and I said “But it’s not that different to how he normally looks and Cass said “but he’s more shiny” so I told him it’s ok because his hair will grow back soon and he started wailing (which I didn’t expect) and he explained through his sobs that he “Wants to see Daddy’s head when it’s all shiny!”. Bless!

Yawn - have to go and make 30 pairs of bunny ears now - cripes that's one way of taking my mind off things........

H and Pxxxxxx

small steps....

2009-03-18T16:02:00.000-07:00

Just a short one tonight honest!

Paul is making improvements. His chest is getting better, he is requiring less support from the ventilator but he’s still a little way off from being off it completely. They are weaning him off slowly which I’m comfortable with, rather than any sudden movements. So there will be some slow, uneventful days ahead of us hopefully where he just recuperates as much as he can. Cancer wise we won’t really know how effective the Chemo has been till they scan him after 21 days (in about a week and a half) but it seems to be going in the right direction.

He tried sitting out in a chair today which was tough for him but he’s so focused it’s unbelievable. In fact it’s a lovely thing to be newly inspired and in awe of a part of someone’s personality, when you have been with them for 13 years. Just when you thought you knew everything they go and pull some incredible trait out of a bag. Paul’s has been, not just his resilience (I always knew he was made from steel girders), but his unrelenting focus on his goal of breathing and getting better. I’ve been fussing around him trying to hook up a DVD player or some music just to while away a bit of time but he looks at me as if I am mad! He says he will do all that when he gets back up to the 13th floor. He just wants to concentrate on getting out of ITU – He does read the Guardian though – in fact the day he asked for the paper was a good one for me!

Well that’s it - time for bed – night night x

Rollercoasters, mustard seeds and Mr T.

2009-03-16T16:48:00.000-07:00

It’s been a strange few days with about as many ups and downs as there could be, squeezed into them. Things are relatively stable at present. He had another Tracheotomy done on Friday, which bought with it a few problems as there seemed to be some kind of blockage and he struggled for breath a few times but that’s been sorted out. He’s been bought out of the sedation now almost entirely and only being put under at night so he can sleep. He was utterly exhausted to day as Intensive care is just not conducive to rest and relaxation with all the machines beeping and general activity around him, doctors coming and going, blood to take , medicines to administer, alarms going off and ventilators hissing – like trying to take a nap in the concourse at Liverpool Street station.. But the upshot is that, although he may not be feeling brilliant, he is improving. There is still a lot of gunk on his chest but it’s slowly coming up. One of the physiotherapists was helping him cough stuff up today and she sort of jiggled his chest – really rudimentary stuff but clearly effective and I suppose the human version of the Oscillator – Ha see we don’t need Oscar at all!

As far a the Chemo goes his glands are still smaller and in some places imperceptible and his White blood cells have started to go up again. The Chemo kills the cells – cancerous ones and healthy ones and it’s up to Paul’s body to generate fresh ones which he seems to be doing, so things are moving in the right direction. I suppose the pressing thing is his lungs and him being able to support himself so that he can get back up to the Haematology ward where things are calmer….I make it sound like the simplest thing in the world but I suppose to Paul the distance between the 3rd and the 13th floor must feel infinitely greater than 10 flights of stairs.

Still we had a wonderful injection of positive energy on Saturday from Tanya. Her children go to the Dharma school in Brighton which is a Buddhist school. Her son Noah has chanted furiously in the past for Paul and last week they were paid a visit from some eminent monks, one of which had never stepped foot out of Thailand. He bought with him some mustard seeds that have been blessed with good health and long life not only by him but he had also walked 40 miles to have then blessed by the Dalai Lama! There was a meeting between the monks to decide who should be given the seeds and they decided – yes you can guess – that Paul should be the worthy recipient. How utterly cool is that? I told Paul and I have not seen his eyes light up and face crease with such happiness in a long time. Paul has to eat these seeds apparently – I have to find out if I can cook them or if that will destroy the goodness – not that I should imagine cooking magic Buddhist dust is like boiling alcohol or something – but would hate to risk it.

Moving on from Buddhists to the A-Team, I also found out recently that BA Barracus has fought a rare and aggressive form of Lymphoma as well. It took him 6 years but he did it. Paul was tickled by this as well.

Well I hope you are all harvesting the sunshine and turning it into positive vibes. Cass and Kits and I sat on the doorstep yesterday soaking up the warmth and Cassidy asked me “When I’m a grown up, will Paul still be in hospital?” to which I said “no, he’ll be home soon”. But it made me realise that his idea of time and how long daddy has been away must feel like forever and when I think about it, it seems like an age to me as well. Autumn was waning when he got sick, winter came, Christmas passed and January sloped by, snow fell, crocuses bloomed and died and now spring is so close we can smell it and there was even a hint of summer in the warm rays yesterday…….Lets just hope the cancer passes as quickly as the seasons…….

Who's Oscar?

2009-03-12T15:13:00.000-07:00

What day is this where are we? How many days has it been since I last wrote? I feel like I am caught in the parallel universe that is ITU world........Over the last couple of days things have been a bit of a rollercoaster as is the way with intensive care. There is only one advantage to having been through this before and that’s knowing the beast a little. There’s a lot of medical detail to include here as his treatment is quite complex now so I will keep it as brief as I can.

He's currently stable and although he's having a lot of oxygen pumped in to him he is essentially breathing for himself. If you imagine that yesterday the ventilator was literally doing all the work, pumping his lungs in and out in a very regimental fashion and today he is doing that leg work for himself it's pretty good. I have learnt from the last time that these little things are positive signs, it's signs of his body taking charge. There’s a long way to go and the Doc’s are very wary of being too optimistic but he's making progress. When I went in today they had pulled back on the sedation quite a bit so he was responding to me and doing thumbs up. He’s uncomfortable and I know he’s pissed of at being in this position again but he’s a true stoic Scotsman. I find it amazing that despite the wires and the machines and the drugs and the discomfort you still get the sense that he doesn’t want to put anyone out, he still says “I’m fine, I’m fine”. I’m not sure I could ever be as brave.

As far as the Chemo goes the Haematology doc said (the unfeasibly pretty one from before) that although his treatment will have to be interrupted, it’s not the end of the world. The drugs are called Codox – M (sounds like a sci- fi thriller title to me), he’s had the Codox bit already and the ‘M’ part should have been administered tomorrow but with Chemo the bulk of the drugs are given at the beginning of a cycle anyway so the fact that he misses this ‘M’ part is apparently not brilliant but not completely detrimental to the overall picture. They also said that his nodes in his groin have gone down significantly which is good news, considering they were as big as Kitty’s head a week ago!I was asked if I wanted to put Paul up for the chance to be included into a clinical trial for a super duper oscillating ventilator (called Oscar). Not as scary as it sounds as there was really no risk to him being involved but being chosen to go into the trial is completely random (otherwise the findings are invalid) so after putting his name into the hat as it were, we were told he would not be involved which is a bit bloody frustrating. When you know there is a hot little ventilator down the hall with a cool name but you can't access it - it sucks! But I have to console myself with the fact that he got through the last period in intensive care without the help of sodding Oscar - I mean, who’s Oscar anyway!

Every time I travel up there, as I am nearing Tottenham Court Road the butterflies start dancing and by the time I jump off the bus at to Warren street they are doing a bloody Riverdance. But as soon as I am in the room with him there’s just the merest tap dance in my heart. When he was intubated again I will admit to being quite despondent at times but, since yesterday, I have felt more resolved that this is truly just a setback. Yesterday one of the doctors was talking to me and she was emphasising the seriousness of his condition and I was nodding gravely; but in my head I was saying (Yeah – Whatever!). I had to admit to her that, though I do not have a medical eye, as far as I can see he’s in much better shape than I have seen him before and whether it’s blind optimism or not , it’s all we have got most of the time.

I’m so tired I’m nodding off between sentences – never done that at a keyboard before – will write more tomorrow

H and P xxxxxx

Setbacks

2009-03-10T16:34:00.000-07:00

Well I don’t have the best news for you all. Paul was transferred to the Intensive Care unit of UCH yesterday. He had been struggling a bit with his breathing and had been requiring more oxygen – more than they can give on the Haematology ward. That coupled with the severe sickness and therefore lack of sleep meant he was just too knackered to keep going. Anyway I got a call at about 1 AM and they told me that Paul had asked them to call me and tell me that they would probably intubate him by the morning. This means that they sedate him by pumping him full of morphine and a paralysis drug, put a tube into his lungs and inflate them artificially. This is exactly what happened to him when he was admitted to the ICU at Whipps in November and for those of you that remember the aftermath it was really horrible for him and I know he must be pissed off it’s happened again.

But the upshot is he needs the support and what amazing support it is. The doctors today said that the CT scan showed signs of infection in the lungs which was pretty much inevitable because of his lowered immunity. I guess that, because his lungs were in a bit of a shambolic state, he is not so well equipped to deal with such an infection. So they are giving him a broad spectrum of antibiotics and just monitoring him .I won’t go into all the details of saturation levels etc (believe me I’m almost a bloody expert on these things now) but he has improved over the day – something that didn’t happen so quickly at Whipps. It’s strange because, although it was horrible going up there today on the bus and I had sick butterflies careering around my tummy throughout the journey, when I got there it felt so familiar that I soon relaxed. When I saw my Paulie lying there it seemed ok, it’s still Paulie, he’s still here and he’s still fighting……….

It’s not the best news but let me reassure you that things have been more desperate than this. His life has been more on a knife edge. When one of the doctors said to me today “I don’t want to labour a point but I you have to know I sick he is” I did say “ Well in all honesty, I have seen him worse!”

I’ve been thinking about the chant. When I went in today it felt like I was being fast tracked in a time machine to this time last November when he was lying in the ICU unit of Whipps. The same machines bleeping , the same wires pumping stuff in, taking stuff out, the same figures, numbers, percentages ever changing on the screens. And one of things I found myself saying almost automatically was ‘Miraculous Recovery’. I used to whisper that over and over to him, till I was almost speaking in tongues, when he was sick before. So I’m wondering if that ought to be the chant now. It covers it all doesn’t it? The lung thing, the cancer thing the everything really.

I’m also wondering if I should let you in on something else as well….Oh ok it feels personal but I guess when you start a blog you may as well embrace the blogging way. Since Paul has been ill I have been saying that I have this vision of me him Cass and Kits on a beach somewhere, I don’t know where – it might be Thailand but is more likely Margate. But we are all together and there’s a lazy, hazy summer breeze and the sea is smacking the shore and our knees and the sand is crunching between our toes and our teeth and there’s ice cream and chips and sandcastles and tea and everything is ok. We have been fantasising about that moment so I’m thinking that perhaps when you are saying ‘miraculous recovery’ you can think of a beach too. Your own beach or ours or even just a sea breeze but it might help to focus the white light………

It’s not great news but it’s the not the worst. Keep chanting and keep believeing that the stubborn Scotsman will get better.

Wll keep you posted
H and P xxxxxxxxxxx

Think of a mantra.....

2009-03-08T15:36:00.000-07:00

What a day; full of sunshine, rain, fluffy clouds, lashing wind, spring breezes, pale blue and leaden thunderous skies. A bit like a meteorological analogy of my emotional state!

I think Paul’s skies are a mainly grey and oppressive at the moment. The Chemo is so horrible for him and making him feel so utterly sick. They warn you and give you leaflets to read and tell you it’s inevitable but it doesn’t help when he’s in the middle of it. One of the nurses told us something interesting that she tells her cancer patients when they have gone off food. She said you have to approach it the way you approach taking your medicine; as something you simply have to do. To be honest though, when someone gives you a pep talk like that, especially when you feel that shit, it must be really annoying. She meant well but I’m surprised he didn’t throw his power shake at her.

He was a little better when I went in today though so hopefully there will be moments when he won’t feel so bad. He does have a temperature though and a possible infection of some sort which is almost inevitable considering the Chemo wipes out his immune system. Which is why we both think that it would be best not for him to have any more visits from now on. I know lots of you have been wondering about visitation and it’s just not worth the risk of giving him something that might really set his recovery back. Coupled with the sickness he’s just not up for it right now. I will off course let you all know when he has the all clear

In the meantime I have been thinking that we need a new chant. There was something really powerful and unifying about knowing you were all at some point or another (while jogging, ironing, making tea and during important work meetings so I am told) saying the same mantra. I thought I would throw it open to the floor for suggestions as I can’t think of a really good one that encompasses all things. It needs to be anti Cancer, anti sickness and full of that white light stuff, or something simple like ‘Kaboom’ in the words of Cassidy.

Idon’t know but you can leave comments on this blog so if you have any ideas and let's get one on the go.....

H and P x

No Spine No Brain!!!!!

2009-03-06T16:53:00.000-08:00

Well you all should all be jolly pleased with yourselves because your no brainer of a chant has worked – he was told today that it hasn’t reached his nervous system hooray. So ‘No spine and No brain’!

It’s such good news and brilliant to have a positive for a change. It’s really, really what Paul needs to boost his confidence and really, really what we all need to hear too, to boost our own. It feels a little like I’ve won the lottery - without the wads of cash obviously. Actually on the subject of pointless gambling, I have discovered a secret (not so secret now) pleasure in scratch cards which has increased with Paul’s illness. I think I feel that my odds of winning have increased just by dint of him being ill; like the Gods of bad luck have taken their eyes off the Mackey ball because they think they’ve got it covered with this whole cancer thing. Actually this is the first time I have seen my skewed logic in black and white and it’s just a bit mad and financially ludicrous really. So no one tell Paul ok?........

He had another lumber puncture today just to boost the chemo in his spine. The Doc said yesterday that the success rate in this drug preventing it spreading is really good so, now we know it’s not there, we can focus on blocking it. ‘Pow’, ‘Kaboom’, ‘Kill Kill’ as Kitty would say (guess where she’s learnt that from). We just have to hope that this latest round of drugs has a more significant impact than the last. It’s not that the last lot failed it’s just they want to see more impact.

As far as how Paul feels, I think that today is the worst day so far for him and the Chemo is really living up to it’s reputation. He has been feeling very nauseous and a bit glum – even my shepherd’s pie didn’t cheer him up. It’s a horrible irony that a person that doesn’t feel that ill is made to feel so sick by the very thing that’s supposed to make him feel better. But it’s for the greater good and he’s the first person to say that, it’s just pretty impossible for him to feel the benefit of it for the time being.

But today is a good day, a positive day. Not just because of the result but because I just woke up and felt superhuman for Paul. Not all days are like that. Sometimes it seems there are dark messages hidden in everything. From sodding predictive texting spelling out ‘demise’ instead of ‘Denise’ to ominous Love Hearts in a packet of sweets saying ‘Bye Bye’; to not being able to disentangle Paul’s struggle with Jade Goody’s because it’s everywhere. But then I wake up and the sun is shining, spring is only a hop away and I can look forward to the time when he comes home. I hope that there are days when you all wake up and feel super human for him too. It might be in the flutter of spring petal, the way the morning sun winks at you through a chink in a curtain or a patch of blue in a grisly sky. Whatever makes your heart skip with optimism – think of Paul in that moment.

Shit it’s late – can you all chant for my children sleeping in too.....

Kisses H and P xxxxx

4th March

2009-03-04T16:04:00.000-08:00

Paul and I have decided that it might be best to start a blog as it's quite hard to include extra people when you have started a thread on Facebook and anyway not everyone is actually on Facebook. I was a little concerned about the full public nature of this but Paul said "Fuck it what have we got to hide" and I have to agree. The more people thinking of Paul the better.....

So he has started a second round of Chemo - this time with different drugs. The first lot he was given, amusingly called CHOP ( kept thinking of Cassidy karate chopping Lymphocytes!) wasn't working as effectively as they would like. Although it has shrunk some of his glands and his chest is infinitely better, they have decided to diversify. I think the doc's know pretty quickly if a particular drug is working or not and if they aren't happy they ditch it and move on. This next lot is apparently a bit more hardcore in terms of side effects and he is going to feel pretty shitty soon. It was scheduled to start tomorrow but they had the drugs ready so they started tonight. He's also had a lumber puncture done today where they administer some preventative chemo into his spine to stop it spreading there and to his brain. They will also take a sample to find out if it has got in there already. In fact Paul has asked a special request of you all to focus on a negative result for that. He really wants to hear some good news and says if you can all focus your chanting on "No Spine, No Brain" (sounds a bit insulting but he doesn't mind!) that would be great........

So it's full steam ahead again. The consultant today was lovely - I don't usually get the chance to be there when the doc's go round but I was there early today and she was really upbeat and encouraging, she said there was no evidence to suggest it had spread so not to worry. On top of being really nice she was also incredibly pretty, petite and ridiculously young. I found myself drifting off as she was talking about complex drugs and pondering how someone with such a stressful job can have NO wrinkles at all. Hence the reason why I can't tell you the name of the latest medicine! Will find out and report back in case there are any fanatical googler's among you.

I have been asked many times how Paul is within himself so I might have a go at answering this although even I will never fully understand how it is to be him right now.

He is grumpy (what's new) bored and fed up with the shitty food (no surprise) and desperate to come home. But also upbeat and funny and charming the pants off the nurses (male and female) .You can see they love coming in to see him. The nurse that takes his blood every morning, the woman that sweeps the floors, the octogenarian that brings round the 'Metro' every day, the doctor's, the consultants the woman that makes his bed - he treats them all with the same reverence and good manners. I have always loved this about Paul and it's interesting to see the effect it has on those around him. Sometimes you can see he's overwhelmed by the enormity of this but mostly he talks about it as though he's got a few hard shifts of work ahead of him. Like it's 'no bother' as he would say. The idea of it spreading to his brain and spine unnerved him for a bit but if we all chant hard enough maybe he won't have to worry about that. I'm going almost everyday with supplies; I am determined to help with the food situation and hopefully the kids will get to see him for a bit over the weekend if their perpetual colds clear up. On top of that he's got a good view up there on the 13th floor and his room points east so we wave from time to time........

We are still in the thick of it, the utter, sticky, thick of it but we have been in a worse place before. It has been more desperate before. Paul said it's strange because he actually doesn't feel that sick and that it's strange to think his body is fighting something really horrible but ultimately he doesn't feel that bad. I think that’s a good sign.

Must go and finish constructing a half eaten book out of a cereal box for Cassidy's dress up day in school tomorrow. They have to be a favourite character from a book and he had chosen 'The Incredible Book Eating Boy' - why he couldn't have been Peter Pan or Captain Hook or something you could just buy from a shop I don't know..........Thanks for all the support guys, Paul and I are sending our love to you all tooH and P xxxxxxx

25.02.09

2009-03-04T15:57:00.000-08:00

Firstly thank you for the brilliant and touching response to my email! Really, your support and words are enough to keep me going and in turn Paul……

Just thought I would give you a quick update. The doctors did an X-Ray today and said his lungs looked slightly better which would indicate that the treatment might be working. Notice the vagueness of the statement they use, which is understandable because it is early days. But the flicker of a positive is all I need to jump astride my horse and gallop off into the sunset!

Seriously though, it is early days. The Chemo is administered in 3 week cycles and the true test occurs around day 10 of the cycle when his immune system will be zero. They will then see if the cells begin to build themselves up again. This is apparently the key to the success. I have to say that I haven’t yet read the booklet they give you on the ins and outs of Chemo as it terrified me a bit but my understanding is, that if this round of drugs doesn’t work they can and will try others.

In the mean time the fact that there is a positive effect already means that we can all have something extra to focus on when we are pouring in our good vibes to him (Emma that image of you bathing him in white light was brilliant and one I did quite a lot when he was in ICU last time and one I shall take up again). It’s a small step but an important one to him and us. Maybe we can focus on pure light and building cells like some crazed evangelical bob the builder. Actually Cass and I have been blasting his lymphocytes every night, he’s turned it into a kind of arcade game where he throws fiery balls of anti toxins at Paul and blasts them with ‘Kapows’ and ‘Kabooms’!.....quite cathartic actually……..

While I am on the subject of Cass I will demonstrate one very good reason why Paul has to get better. Namely that there is no way I can be the person to answer this boys incessant questions. These were fired at me in the toilet in the 5 mins it took Cass to have a poo:

-Is God the cleverest person in the whole world?
-Why do people think that God made everything?
-Why do women have babies and men don’t?
-Are there tiny particles inside an Atom? I told him that there are protons and neurons and Electrons. (not even sure if that’s right)
- Why are protons purple?
-Do eyeballs have reflections?

Arrrhghhhh!!!!Paul really, really has to get back soon – otherwise I am in trouble. Either that or we get Prof Montgomery in to baby-sit a bit……….

Love H ad P x

Here goes......

2009-03-04T15:56:00.000-08:00

24.02.09

It's taken a lot of staring at the computer screen and then getting up and walking away before writing this but I do realise there are some people to whom this news will be new so I have to take the plunge. Also Paul wants me to do this, so here goes......

Last Thursday evening Paul was diagnosed (finally) with Lymphoma or to be precise 'Peripheral T-Cell Lymphoma'. In the words of the doctors it is ‘advanced’ and 'aggressive' but it is also highly treatable. He is currently in UCH receiving Chemotherapy, which they started on Saturday. He is in the best hospital with the very best doctors which is such a fucking relief after the Whipps Cross disaster. Basically for those that don’t know, he had been signed off by Haematology dept of Whipps X and told to avoid doctors because his gland problems were 'reactive' (meaning reacting to a virus or infection). Neither Paul nor I were happy with this so we contacted the wonderful Professor Montgomery at UCH (who came and gave us a second opinion when Paul was in intensive care) and he agreed with us and fast tracked a referral to the Haematology dept. The upshot being that within a week and half they had performed a biopsy and given us a diagnosis.

We don't know, of course, whether they would have been able to find anything quicker than Whipps because we don't know when the Lymphoma had really taken hold. And there is a certain amount of luck involved (apparently) with finding the right node. However, what we do know is that if we had taken the advice of Whipps he would not have had much longer to live!

But instead and very luckily, he is currently on the 13 floor of UCH being given the most amazing treatment. He's tired and bored of the institution of hospital, missing his family and friends but being his usual upbeat self, taking the piss and finding the inappropriately funny things in his situation.

We would both appreciate the same amount of positive thoughts being thrown his way. I am sure that they made a difference last time. Whether it's prayers in Norwich cathedral, Buddhist chants (Tanya get Noah back on the case!) or just you’re continued good vibes floating our way. Just increase than ten fold this time.

In terms of going to see him, it is a bit of a no no at the moment because the chemo has smashed his immune system to pieces and he will be very venerable over the next couple of weeks. He's in a private room and I haven't been in since Saturday because I have a cold, which tears me apart but it has to be that way because he has to get better and we don’t want anything to jeopardise that. Ill let you all know when visits are possible.

Paul's stubbornness and intrinsic belief that he is right and his ability to have a bloody answer to everything will get him through this, my ability to wipe bottoms, pack school bags and make really tasty biscuits will get Cass, Kits and me through it too........

Must sign off now - will keep you all posted