Here

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

Goodbye

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

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

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

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

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

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

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

I whispered “Goodbye”, I whispered “Goodbye”

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

I said “Goodbye”, I said “Goodbye”.

3 words

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

I thought I would post them here for you now

AJ Butterworth : Gentle, proud, and witty.

Nathan: fantasy football god

Becci: Generous, caring and incredibly knowledgable

Gaz: Everybody's Best Friend!

Denise Retallick: intelligent, selfless, fun

Kaye Butterworth Altruistic. Erudite. Handsome

Natalia: Husband. Father. Friend

Jane Harris: Hannah, Kitty, Cassidy.

Natalie Murray: Kind, Generous and warm hearted

Tamara Giltsoff: Generous smart stoic

Wendy Cave: Courage, Wisdom, Wit

Jessie Intellectual, brave scotsman

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

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

Derek Riddell: caring, happy and fun

Paula Baker Intellegence, Integrity, Inspiring

Jo Hammond: Unassuming, glaswegian, gentleman

Beth: Courageous , loveable , funny

Fran: Rush, Hour, Laughing

Mug: Man and Superman

Rory: Honest

Amber: integrity. wit. Kind

Aiofe: Intelligent, sarcastic and heroic x

Ali: Wise, adventurous and loveable.

Mum: Love,lamb and laughter

Mine will always be

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

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

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

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

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

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

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

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

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

No you don’t, there is more…………………

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

Lisa – flying saucers over Goa

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

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

Ali – Lady Di’s funeral.

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

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

And that really, really is that.

I love you all forever.

Paul

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

Jam Sandwich!!!

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

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

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

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Charity gig with Jam Sandwich

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

Where: The Telegraph

11 Telegraph Street

London

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

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

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

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

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

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

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

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

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

Arse

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

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

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

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

So he’s home.

So we carry on.

So we live a day up

and

a

day

down

Love

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

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

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

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

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

zzzzzzzzzz

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

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

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

Sorry

Will def try again tomorrow x

ups and downs

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

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

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

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

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

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

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

If you need to contact me about fundraising

Lets do it!!!!

Onwards

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

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

Forwards and upwards and onwards………

Mini Moon

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

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

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

Keep the faith people - we are xxxxxxxxxxx

Stuff

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

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

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

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

Just wanted to check you are all chanting.

all together now:

FOR THE LOVE OF LOOOOOOOOOOOOOOOOOOOOOOOOOOOVE

For the love of life.....

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....

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

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.......

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

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

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

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

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.

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

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

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!

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.....

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.

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

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

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.

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

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

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