Thursday, 30 April 2015

Caffé Nero, Egham.

So, after my big adventure to the Doctors I was full of plans; what I'd do, where I'd go.

Then I got up the next morning and was in agony again.

Anyway, I'd promised myself I wasn't going backwards so we were going out for a coffee......whatever.

When I got to Egham (about 3 miles away) I was in quite a bit of pain and we couldn't park anywhere near the café. We went for  drive and then came back.

I didn't realise how long I'd been away; I came out of hospital 2 weeks ago, I was in for 10 days and before that I wasn't able to move about anywhere for some time.

Was I really away so long?

If you've read this for any time you'll know that I didn't have broadband and used to go to Caffé Nero for the Net and to get away from the troubles of caring for someone.

A lot of this Blog came out of that café or the research I did there.

When I first got ill and when I was briefly stabilised I'd research articles in Caffé Nero, when I should have been travelling the world.

And now they changed it all! How could they do that - I only turned my back for a nanosecond and it's been rebuilt!

It seems like in the last 6 months all the places I valued have changed.

And yes, I am being grumpy about it because it's not just the last few years; there are a couple of my ghosts there too as well as other memories.

It's all the more sad because now we have broadband the café will never quite mean as much to me as it did once.

And it really HURT to get there.

Tomorrow we're going shopping, now that is going to sting.

It's all part of the build up to my big trip next week.

Neil Harris

(a don't stop till you drop production)


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Wednesday, 29 April 2015

Big day.

Ok, so I went a bit quiet over the last couple of days - I had my reasons!

On Saturday, with a lot of supervision, I finally got my trousers on and managed to walk (with a walking frame and a spinal brace) to my car, sit in the passenger seat and put on my seat belt. Big stuff, I can tell you.

On Sunday I DROVE my car - about 3 miles.

Now that was epic.

In the background, I'd moved one of my drugs from the morning to the night to reduce drowsiness.

But I paid for it all - Monday morning when I got up I was in agony. 

You have no idea. But I drove again - about 8 miles or so.

I had my reasons; on Tuesday I had an appointment with my Doctor because my Meds were running out.

That means a 12 mile drive. The only alternative would have been an expensive taxi and that was always going to be pretty painful to my back anyway.

Wednesday; I DROVE to the Doctors. Sat in the waiting room (I couldn't sit anymore in the Doctor's room!), drove back and stopped at Tesco's where I went to the pharmacy.

I had to do that because I'm on the kind of drugs where there's trouble if it's not you ordering them.

Then I took a walk with my walking frame around the store.

No one ever felt happier walking around Tesco's, I can tell you.

Mind you I couldn't buy anything and I won't be able to for a while but that was a Big, Big day.

Thanks Robyn.

Now all I've got to do is work out how I get to St. Mary's Hospital in Paddington to get a scan done next week.

That's going to hurt a bit.

Neil Harris
(a don't stop till you drop production)


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Tuesday, 28 April 2015

36000 Thanx!

Many thanks for taking this Blog to 36000 - it's been a struggle.
It all started after St. Peter's Hospital, Chertsey sent me home with a seriously broken ankle for a week. When I complained the Accident and Emergency department didn't take it seriously; they never dealt with the problem. They blamed the inexperience of junior Doctors when this was a mistake by a consultant who did not know what he was doing.
He was allowed to continue to practise until his contract ran out.
Since then I've discovered how bad Wexham Park Hospital, Slough is - that's the next hospital along.
I've also found out about the appalling record of The Abraham Cowley Unit; that's a psychiatric hospital in the grounds of St. Peter's but run by a separate health trust.
As far as St. Peter's is concerned there are good departments and bad ones.
Wexham Park is a failing hospital - taken into special measures last year due to the risk of harm to patients and then taken over by Frimley Park Health Trust. It is still a risk to patients and the problems are systemic; they run through the whole hospital.
So, I may have cancer and I may have bust my back but I'm not about to give up - not just yet.
Neil Harris
(a don't stop till you drop production)

Monday, 27 April 2015

A really big adventure.

So, I told you that on Saturday I got into the passenger seat of my car and did some washing up? It doesn't sound much but it was a big deal for me.

I knew I'd pay for it the next day and I did. Getting up is agony - it's just before I dose up on pills and it really hurts.

I also told you that the nurse told me I needed to push myself on the bad days?

So I took it easy at first on Sunday but in the morning I put on my trousers for the first time since I came out of hospital.

Then, in the afternoon, I drove my car.

It's fair to say I only drove it about 3 or 4 miles on an easy route without speed bumps.

And it did hurt too!


Now that really is an adventure. I'll have to see how it goes tomorrow......not looking forward to that.

Neil Harris
(a don't stop till you drop)


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Sunday, 26 April 2015

Push it baby.

In the interests of acclimatising our new broadband (the instructions told us to do it honestly) I'm maxing out on Youtube and doing lots of the things I'd have loved to do but never had the opportunity or didn't have the money when it mattered.

I went skiing!

Now that really was something I should have done. It looked every bit as good as people say it is.

I went Stockcar racing and Gokarting. Wow!

This morning I canoed down white water rapids, climbed the 'Bugaboo' mountains with The Harvard Mountaineering club' and then, finally, I summited Mount Everest.

That's something I would never have been able to do (scared of heights) but when I got cancer I did have ambitions to walk to base camp and that would have been a real achievement in itself.

Unfortunately, while I was well enough I couldn't get away.

All of this is possible now thanks to 'GoPro', a small camera and drive about half the size of a mobile phone but thicker.

You can mount it on your helmet or stick it in a car or on a
bike and it just records everything as though you were there.

All you have to do is think of the biggest adventure you can and search Youtube for it with the word 'GoPro' added and some kind person will have posted it up for you.


I've been having my own adventures too - this morning has been agony so I'm paying for it.

Yesterday I did the washing up - actually it was just two dishes but it seemed a lot more. An achievement because Robyn has to do everything for me.

Then in the afternoon, Robyn took me to the car and I was able to get into the passenger seat, close the door and put on the safety belt.

It's a huge achievement - I have to be able to get about and there's no hospital transport to pick me up because
I'm living out of the area.

It's huge!

Unfortunately, I knew it would be painful when I went to bed and it was. I also knew I'd pay for it this morning when I got up - it was agony.

Anyway, one of the nurses at Charing Cross warned me that on the good days I should hold back (Doh! As if!)
and on the bad days I should push myself. So we'll have to see about that today!

Neil Harris
(a don't stop till you drop production)
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Saturday, 25 April 2015

Broadband day.

Our broadband arrived and, thanks to Robyn, it was installed without any problems.

Here's an extract from the instructions;

"For the next three days or so, your broadband speed might go up and down. That's normal. It takes that long for your broadband to find the best speed for your line. You can help it along by leaving your xxxxx on all the time and using your broadband as much as you can for the first few days. If you've got questions about the speed of your broadband after that, go to xxxxx"

"Use your broadband as much as you can for the first few days"

Well that's a bit inconvenient!

Talk about offering a bottle of vodka to an alcoholic.

Talk about offering Theodore the Chipmunk a cream covered waffle.

We, gorged ourselves.

I spent some time watching the 1965 Monaco Grand Prix, which I am a bit ashamed of.

Then I watched someone who'd put a dashcam on his Toyota Supra and drove in convoy at top speed with his mates along 'The Atlantic Highway', which is in fact a little country lane that runs along the coast of Cornwall from St. Ives to Lands End; one of the most beautiful and enigmatic roads in Britain.

I flew in a balloon over central London as dawn broke or over eerie rock pillars in Turkey surrounded by other hot air balloons as far as the eye could see.

I took a helicopter ride and I sailed on a boat in the North Sea.

So that was a complete waste of money then.

Neil Harris

(a don't stop till you drop production)


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Friday, 24 April 2015

I'm back!

Made it!

In the last couple of days I've been unable to access my Blog because my dongle ran out and were waiting to have broadband installed.

Now it's happened and somehow I've scrambled aboard the 21st century. Robyn used her phone to activate a couple of entries I'd installed on Bloggers memory ready for the break, so I haven't really been away.

I'm actually quite sad - for the last three years I've had no internet connection because my Mum had an alarm system set up through her phone and we would have needed another line. It would have probably interfered with the was just too complicated.

Anyway I used to supplement my dongle's miserable data with trips to Caffé Nero where I downloaded the big stuff.

It was about the only break I ever got and as I had cancer it became a lifeline.

So now the internet is so easy to use, some of the fun and excitement has gone out of it.

And I miss going to Caffé Nero too, it meant a lot to me.

So I have mixed feelings.

I've also been having a tough time over the last couple of days; a lot of pain when I expected (hoped) things would be improving, not least because I'm on some fairly heavyweight painkillers.

And (of course) I had unreasonable expectations about what I would be able to get up to. But it's a problem; I need to get to medical appointments a long way away - I've got to get moving!

Neil Harris
(a don't stop till you drop production)


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Wednesday, 22 April 2015

420 Steps.

I had a bad night and a bad morning; after I had my meds that made me all the more determined to get out.

I'd intended to walk to where there are some fabulous Cherry trees - full of blooms.

I didn't make it which is sad but I did make it half way along the little service road next to us and got this photo. Given that I was in my dressing gown and using a walking frame this must have been quite a sight!

I don't care.

I counted my steps; 420 in total. Which is a real triumph as I wasn't doing so well.

Neil Harris
(a don't stop till you drop production)
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Tuesday, 21 April 2015

Don't Panic.

Feeling low today - yesterday I walked further than I had before and moved around the house a bit more too.

Unfortunately I've been paying for it ever since; muscle spasms and a fair bit of pain despite all the meds.

Just as I started getting some hopes together I got knocked right back.

It's tough.

I have to remind myself that this time last week I was bed ridden and screaming with pain.

I thought I'd triumphed; I'd managed to get myself transferred from the worst hospital in the world (Wexham Park, Slough) to see my Oncologist at Charing Cross.

Then I got a kick in the stomach; my cancer had spread all over my back and I needed emergency Radiotherapy to kill the pain, then when I'd come to terms with that, I was going to have some very unpleasant decisions to make.

I'd been scanned and tattooed all ready for 5 days of Radiotherapy. Then I got put on the acute cancer ward for pain control, which is not the most fun place in the world to be.

Except that in the meantime, my wonderful Oncologist Dr Feelgood, who happens to be the only Doctor in the world who ever has doubts, got together a whole team of radiologists and they all spent some time staring at my scans.

After a lot of pencil sucking, they all agreed that Dr Feelgood had been right in the first place; the collapse of my back is the side effect of the medication I've been taking and not a sign of the cancer's spread.

I have no illusions; it is still just a matter of time.

But that's how I got here today; in one 12 hour period I went from the end of the road to a new beginning.

It's still tough.

In the meantime there are some other changes coming; part of the charm of doing this blog is that I never had broadband.

I was caring for my elderly Mum; she needed an alarm system and broadband was never going to fit alongside that.

So doing the blog was always like a guerrilla war; I had to use a dongle with hardly any data on it topped up with visits to Caffé Nero to pig out on their free Wi-Fi.

I can't travel any more so no more cappocino for me.

Meanwhile we are trying to get broadband here but unfortunately my dongle runs out today and the broadband won't be here for a while.

I've got a few schemes up my sleeve to go on blogging but there will be some disruption.

Don't panic (yet).

And when it's all up and running some of the fun will go out of it.

So I could do with cheering up at the moment.

Neil Harris
(a don't stop till you drop production)


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Monday, 20 April 2015

Dulce et decorum est by Wilfred Owen.

It’s a hundred years since the First World War or as it used to be called ‘The Great War’ or ‘The War to end all Wars’.

And now David Cameron and people like him are glorifying that pointless waste of life.

So, I thought I’d commemorate an anniversary; it’s a hundred years ago this last weekend that poison gas was used for the first time.

It’s not important who did it; every army used gas in WW1. 90,000 soldiers of all armies died of it and 200,000 were horribly injured too – injuries that shortened their lives and dominated the post war years for them.

Britain made and stored its poison gas at a Top Secret base at Nancekuke on the beautiful north Cornish coast. Remote enough that if there had been an accident only some few thousand local Cornish folk would have died. It’s been decontaminated and removed now but the gas was stockpiled there until the early 1990’s.

This is Wilfred Owen’s most famous poem.

'Dulce et decorum est, pro patria mori' is a quote by the poet Horace which would have been drummed into the head of the young Owen at school; 'It is a sweet and honourable thing to die for one's country'.


Dulce et decorum est

by Wilfred Owen


Bent double, like old beggars under sacks,

Knock-kneed, coughing like hags, we cursed through sludge,

Till on the haunting flares we turned our backs,

And towards our distant rest began to trudge.

Men marched asleep. Many had lost their boots,

But limped on, blood-shod. All went lame, all blind;

Drunk with fatigue; deaf even to the hoots

Of gas-shells dropping softly behind.


Gas! GAS! Quick, boys! - An ecstasy of fumbling,

Fitting the clumsy helmets just in time,

But someone still was yelling out and stumbling

And floundering like a man in fire or lime. -

Dim through the misty panes and thick green light

As under a green sea, I saw him drowning.


In all my dreams before my helpless sight

He plunges at me, guttering, choking, drowning.


If in some smothering dreams, you too could pace

Behind the wagon that we flung him in,

And watch the white eyes writhing in his face,

His hanging face, like a devil's sick of sin;

If you could hear, at every jolt, the blood

Come gargling from the froth-corrupted lungs,

Bitter as the cud

Of vile, incurable sores on innocent tongues, -

My friend, you would not tell with such high zest

To children ardent for some desperate glory,

The old Lie: Dulce et decorum est

Pro patria mori.


Wilfred Owen died on 4th November 1918, just a week before the Armistice was signed.

Neil Harris

(a don’t stop till you drop production)

Sunday, 19 April 2015

Back down to earth.

I got a bit carried away in the hospital; making all kinds of plans. When I got home cold, hard reality set in quite quickly.
I woke up on Friday in a lot of pain and after breakfast and my medication I fell asleep. Woke up at lunch and then fell asleep again until the evening and so on. The first night I was so worried about my back that I slept in my back brace which I am not supposed to do.
Saturday was all different; I went for a walk.
The sun was shining bright, the garden (in between the weeds) was a blaze of spring colours. The greens of the different fresh spring leaves were electric; I walked to the front gate and stood watching the world go by.
It was great.
I spent the rest of the day looking out of the window and just bathed in sunshine.
It really is going to be  a long hard struggle to get nowhere in particular.
Anyway, we celebrated it all with a Saturday night Chinese takeaway; the white bag is full of prawn crackers.
It felt great!
Neil Harris
(a don't stop till you drop production)

Saturday, 18 April 2015

Searching for a new life.

A couple of years back, when I was low I used to walk amongst a group of semi-wild horses who were being kept nearby.
I would give them carrots and they would run around me, fighting and kicking out at each other.
Hooves flying out, it was very exciting; like running with the bulls. I guess it replaced some of the thrill of life that was missing after I got cancer.
As time went by the owners bred them quieter and got rid of the wildest ones - that happened within a year and the thrill was gone.
Nothing would ever replace the thrill of being in the front row of an amazing gig in a small pub (Robyn hated it!) watching a band full of fury.
This is the audience watching The Lagan (Celtic Punks) playing the last ever night at The Hob;  

I had some amazing times in my life; unforgettable. Climbing hills, walking cliffs.

Now it's all going to be different and I need to find a different life - do something significant, something important. something that matters.

You don't get many second chances in life and this is my second.

We'll see what happens!

Neil Harris
(a don't stop till you drop production)

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Friday, 17 April 2015

35,000 Thanx.

Yesterday was tough - I got overconfident. 
Physiotherapy turned up and I got out of bed and I walked and walked, with a walking frame.
No problem.
I climbed stairs to show I could go home. I wanted to thank everybody for how hard they had worked - see?
Then with transport coming at 2pm I got washed at 1-00pm.
Ow! Agony. Nearly fell over, lot of pain and my canula fell out.
I had a sit down and then lay down. The transport didn't come, there were all sorts of problems.
Secretly I was delighted. I had nothing left, I was in pain.
I slept for about 6 hours and just about got myself together. They came at 10-00pm and we escaped, punching the air, late in a dark night.
We got home to a dark, quiet deserted world and sat talking through what had happened until I got my act together to go to bed, very painfully.
So thanks to you all for taking the Blog to 35,000.
Thanks to Charing Cross and the Acute Cancer ward 6 North for getting me through this.
It's going to be a very tough journey and I'm still not exactly sure where I'm going.
I do know I've got Robyn by my side and that's all that matters.
Stick around, see what happens.
Neil Harris
(a don't stop till you drop but you can a bit trembly if it hurts too much)

Thursday, 16 April 2015


What a day!

This is Charing Cross Hospital's Poo identifies the variety of Poo that there is in the world.

They do everything better - instead of just taking down temperature and blood pressure they have coloured charts to fill in so that anyone who looks can quickly see whether anything is in the danger zone.

People know what they are doing. Care Assistants, Nurses and Doctors are professional; things happen.

So, after a week of screaming in pain it took Charing cross about 12 hours to fix the pain, explain to me what was going wrong - make a plan to put it right.

There's no cure, it gets worse...but I'm getting there.

I put the Poo chart up because I've seen Physiotherapy and they got me up on my feet.

They took my back brace and measured it up properly.

Then I walked to the toilet with a walking frame!


It's a triumph, you have no idea. I'm on my feet again.

I've have my 'infusion' to strengthen my bones. I was rather hoping I was going to get an exoskeleton like Wolverine in the X-Men. That would be useful.

I fear it may not work so well.


I woke up and wasn't feeling so good - so it was amazing when physiotherapy came round and I went for another walk.

I'm going home today.

It's an amazing testament to the treatment I got from everyone at Charing Cross.

From screaming pain to being OK - 8 hours.

From arriving on a stretcher to tentative walking?

24 hours.

Going home? 48 hours.

Thank you Charing Cross. Thank you for not being Wexham.

Neil Harris
(a don't stop till you drop production)
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Wednesday, 15 April 2015


These are our Tulips - Robyn took this photo to show me because I won't get to see them this year.
Ok, that was a really tough day; 7 days fighting Wexham Hospital and I finally made it to Charing Cross.
I then got a double whammy as soon as I got there; the only explanation for my disintegrating spine was that the cancer had spread dramatically.
And my blood test was going wrong too.
At that point I had to have a CT scan and a tattoo done to get ready for some emergency radiotherapy over the next week.
And then there was going to be a really tough chat with Doctor Feelgood that nobody wants.
Except that this morning Dr Feelgood came to see me - after a whole gang of radiologists had taken a look at my scan.
We've gone back to PLAN A. My poor old bones need some chemical toughening up, I need some tough old physio and I may need an operation to glue all the bits back together again.
But there is no new sign of cancer (yet).
Dr Feelgood was right after all last month and went to the trouble to get a whole load of opinions to check it out.
So that was a really bad day that turned into a really good day after all. 
And I got to get a tattoo before I died too!
Neil Harris
(a don't stop till you drop production)

Tuesday, 14 April 2015

Robyn at hospital with me.

Here I am with robyn, all drugged up an waiting to go to Charing Cross. The ambulance is here and we are off!

Monday, 13 April 2015

Day six and has Art saved me from Wexham Park Hospital?

Here's my bed at Wexham Park Hospital. with one of the many holes in my blanket. Actually, I wouldn't normally mind I'm not fussy and if you are being cared for these things don't matter.
If you are not being looked after it's confirmation of the way the place is run.
Yesterday, I started having muscle spasms from about three in the afternoon until about 9-30pm when I was given morphine again. Then this morning I was screaming again rom about 3-00am onwards.
I've been complaining for a week that morphine doesn't work - if I have a spasm I'll be screaming no matter how much they give me......and they've been giving me lots.
Then I met Art- he's a Nurse not a Doctor. For the first time he actually listened to what I had to say and prescribed an 'Anti spasmodic' drug.
I'm guessing the clue is in the name - it's starting to deal with the problem. I can move again.
I can't believe that I've been screaming for a week - all night long at times, when there was a simple solution I could have been given on the first day that I arrived. Mind you, 'Pain Management'  haven't turned up yet.
My feet were also examined for the first time today - that's why I came in on an ambulance stretcher it was all about nerve damage.
I'm furious with them - a week of screaming agony and no one listening.
But there is hope - my cancer appointment is tomorrow and the transport is booked.
Now I just need a metal a terminator. That should be simple enough.
Neil Harris
(a don't stop till you drop production)

Sunday, 12 April 2015

The canula at the end of the universe.Day six at Wexham Park Hospital.

It's day six - I don't have a name for the Doctor who is 'treating me', I wasn't seen by a Doctor yesterday and I haven't been seen this morning. Yesterday evening I asked to speak to the matron to complain - he didn't come.

I want to make a formal request to be transferred to a hospital with a spine specialist so at least it's down there in writing.

This is my canula and they've only used it once when I first came in, screaming in pain. I had intravenous morphine which didn't help. Since then I've been working my way through all the varieties of morphine when none of it works.

It can be fun, of course, but it didn't deal with the pain.

Since then I haven't seen 'pain management' and the only solution Wexham can think of has been to pump me full of more morphine which doesn't work at all.

My Oncologist at Charing Cross has now got them to put me on a muscle relaxant and I am hopeful that may work but it's taking it's time.

Here's how you operate pain management at Wexham Park Hospital; on Thursday I was due to be given morphine three times a day and in my book that means every 8 hours.

Instead they gave it to me at 0800, 1430 and 1800. That's three times in 10 hours but then they didn't give it to me again until 0800 am which is a whole 14 hours later.

It meant that at 1300 when I was taken for an MRI scan I had no medication and was screaming with muscle spasms after thirty minutes on the board. 

Just the worst pain ever.

Then morphine all afternoon when I didn't need it.

Next morning? I needed a wash and a bed change because the bed hadn't been changed for two days since I'd been sick in it.

So, because otherwise I'd have missed the change, I had to have the wash and change without medication which meant I was screaming again.
Sunday morning and I'm still in spasms of pain - yesterday I didn't have a wash so that I didn't miss the Doctor who never came.

Not making that mistake again.

The care assistants are lovely - last night Romeo and Jane. This morning Peter. Committed and concerned they are a complete contrast to the highly paid Doctors and Consultants.

Here's an example; a Doctor who agreed that it isn't appropriate to be treated for severe spinal damage by Doctors who hadn't bothered to even speak to you.

His answer?

"Well in 6 months time I'll be working at a different hospital"

This is why nothing changes and nothing gets any better.

Tuesday I'm due at Charing Cross to see my Oncologist - I run out of medication if I'm not there. That's going to be a battle; it's life or death for me.

Perhaps I could padlock myself to the gates at Charing Cross until they let me in.

That could work.
Neil Harris

(a don't stop till you drop production)


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Saturday, 11 April 2015

Wexham Hospital, Slough.

Ok, so here is where I am; trapped in bed on the fifth day at Wexham Park Hospital in the Medical Assessment Unit.

I arrived here by ambulance 5 days ago after a series of collapses and rather worrying neurological feelings in my legs.

I knew I had a collapsed vertebrae and I knew it was getting worse.

Yesterday, without ever having seen an orthopaedic specialist I was told I could go home with a brace and no other treatment (I can't walk right now).

I complained; they never spoke to me, they never explained the MRI scan to me. They haven't stabilised the pain - I've been stuck in a hospital bed for 5 days.

After a lot of fighting I got to see a completely different Doctor from orthopaedics to explain what had happened and later thanks to a nurse I got shown the MRI scan.

It's a lot worse than I expected; a whole lot of vertebrae are damaged and a fair few are badly damaged.

The Doctors who never spoke to me? None are spine specialists, they don't have any here.

They never told me that.

Meanwhile the neurological warnings of possible paralysis continue...

Today I have been waiting 5 hours to see the weekend Doctor to make my various complaints but so far no one has come round to see me.

Robyn has bought a lot of strawberry shoe laces and we are eating them like The Lady and The Tramp ate spaghetti in the Disney movie.

It's nice.

Neil Harris
(a don't stop till you drop production)

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